RSLancastr - Progress and news [Archive]

RSL's better half

9th August 2008, 12:02 AM

HEY! HEY! HEY! HEY!

Do I have your attention? Well, for the first time we have a better understanding of what's been going on, what is to come in the immediate future, and what we have to look forward to. One of the doctors began at the beginning and went all the way into his prognosis. Finally.

The slight difference between the first and second cat scans was not a bad turn. It actually meant there was "no change." The millimeter more blood that showed up in the second was seepage from the original bleed, not new bleeding. The third cat scan done today shows "no change" again. This isn't necessarily bad news. It means there has been no further bleeding, which is good news. Everything he's going through is "expected."

The doctor says Robert will be in the hospital for weeks. The doctor expects him to wake up next week - the week after at the latest. He'll likely be in rehab weeks to months. BUT THEN HE WILL COME HOME!!!!!!

The location of the damage is not expected to affect what we know of as "Robert." His sense of humor, the way he thinks, communicates, reasons, will be the same as it always has been. This got me to thinking . . . so, what if he remains on disability for the rest of his life? What if he can never return to computer programming? What will he do?

HEY SYLVIA, JOHN, JAMES, BENNY, PETER, KEVIN, ETC - ARE YOU LISTENING? IF ROBERT LANCASTER DOES NOT RETURN TO A 40-HR WORK WEEK, IT WILL MEAN HE'LL HAVE MORE TIME TO COME AFTER YOU! Maybe you should be praying alongside all of those praying for a full recovery!

Forumites, the Lancaster clan is ever so grateful for, and a bit overwhelmed by, the outpouring of love for Robert. His mother especially wanted me to express her gratitude to you all.

Good things are coming. They will take some time to get here, but they are coming.

Much love,
Susan

RSL's better half

10th August 2008, 06:37 PM

I wasn't expecting to be updating you again so soon, but there has been a small but significant event. Robert opened his baby-blue eyes today. The nurse told me when I first got in that he had taken her hand and squeezed it. She said he tried to open his eyes, but could not. This was something that she and I both counted as a huge step towards waking up. When she left the room, I asked Robert to take my hand and he reached out and grabbed it.

Later, our friend Neil, the one who married us, came by. He saw Robert, talked to him a bit, then came to the waiting room where I was having my lunch. After some chatting, I asked if he would try to get Robert to move his big toe or something, as the neurosurgeon had suggested. He was all too happy to be of help, so we went together back to Robert's room. We talked about starting with his big toe on his right foot while at the foot of the bed. I went up to Robert's face and said hello and told him Neil was there. His eyelids started to flicker. Before Neil had a chance to say anything, Robert opened his eyes ever so slightly. I squealed with delight, so he did it again. Then I told him that was quite an accomplishment and to go back to sleep, which he did. I have a witness! I told his nurse and she was ecstatic!

A short time later, I sat down with his "primary" doctor. I excitedly told him what had happened, and he said not to "make too much of it." He's a real wet blanket! Then he told me that Robert now has a feeding tube up his nose. I had noticed that. He wanted to take it out and put one at his belly. He said it would be more comfortable. I agreed. He talked about taking Robert off the ventilator and putting in a traec (sp?). I agreed for many reasons. He also talked about a "pick line," which would remain in his arm and they could give him medications through it that would go straight into the blood stream or take blood for testing without jabbing him with needles over and over again. Since Robert is deathly afraid of needles, I wholeheartedly agreed! This will all take place this week. If he wakes up and can breathe fine on his own, and he can swallow OK, they may not do the traec. The doctor thought it would have to be done, though. After he wakes up, and the feeding tube is in his belly, he will still be able to eat by mouth if he is able to swallow.

So, now "things" are beginning. Here we go. The beginning of a long haul. All I have to say is "YAY!"

Much love to All!
Susan

RSL's better half

11th August 2008, 10:22 AM

Good Morning, Everyone!

My name is Janie Lancaster-Busch and I am Robert's Beeg Seestor!

I just wanted to say THANK YOU to everyone who is thinking of my baby brother and offering support. Our entire family appreciates it. I am also grateful to see the support and wonderful encouragement given to Susan. As you can imagine, as hard as this is on the rest of the family, it is especially hard on RSL's Better Half (a description we all agree with, by the way!)

I wish all of you could have seen the look on Susan's face when she and Neal came back to the waiting room after the "eye incident"! We were getting worried about her ....she was so tired and worried she looked like she had been hit by a Mack truck! But after seeing RSL's baby-blues she was on cloud nine and it was a wonderful thing to see!

I woke up with a sore throat this morning, so I won't be able to see Robert today. I'm hoping it is just an alergic reaction to something but I want to make sure first. I will be here until next Monday night when I will head back to East Tennessee so I plan on spending tons of time torturing Robert with memories of him from our childhood (like when he drove us all crazy while learning to play the violin! Ouch!)

Thanks again to one and all!

RSL's Beeg Seestor

(And in case you are wondering ...Beeg Seestor (aka Big Sister) came from RSL. He is now, of course, Leetle Brotherness.)

RSL's better half

12th August 2008, 08:46 AM

Hi, Y'all.

What a roller coaster of a week it has been. From almost the worst news ever to jubilation over the smallest things.

So, today the feeding tube gets changed from the nose to the belly. Man! It's amazing what doctors can do these days! This whole thing sounds unobtrusive and so much more comfortable.

The pick line cannot be done, because the operating table is not big enough to hold Robert. So, they will put one of those things up on his shoulder or neck - like a shunt, I think. That won't be so comfortable, but better than being poked over and over with needles!

Still no word on when the traec will be done. But we still have some time.

I'm off to the hospital now. Love to all. God bless!

Susan

RSL's better half

12th August 2008, 09:13 PM

Another update:

Today Robert got his belly tube. It's working out nicely so far.

Tonight, the nurses had been instructed to shave off his beard in anticipation of the thingy that will be up between his neck and shoulder for IVs and drawing of blood. The nurse in charge of the shift said "No way!" and just trimmed the beard enough as to not interfere or cause infection. Robert was not happy when he heard what they were doing! He's had that beard at least 25 maybe 30 years! When they were done, they loosened his restraint (he kept trying to pull things out) and allowed him to feel that his beard was still indeed there. He lifted his arm up and touched his beard all on his own.

Janie was there when he was being "trimmed." She kept the trimmings (in a baggie marked "Biohazard waste") so she could put some of it in a remembrance book for him. She got to see him open his eyes and lift his arm to touch his face. It made her feel pretty good.

Thank God - and Science - for small favors!

Good night.
Susan

RSL's better half

13th August 2008, 08:14 PM

Hi Forumites!

Well, today was another good day. I arrived at the hospital at 8:30 this morning and Robert appeared to be sleeping comfortably. I decided not to wake him because I knew his mom and seestor Janie would arrive by noon, Jim was coming back up from San Diego just to see his baby brother's baby blue eyes, and Trish would be here after work. The neck-thingy was supposed to be some time today as well, so I figured he was going to have a full day.

They took him away at about 4 pm for another ct scan, but not before he allowed Janie and Jim to see his baby blues. Mom was under the weather, so did not come today. As of 6 pm they still had not done the neck-thingy. Maybe they needed the results of the ct scan before doing the procedure, I don't know. I will demand answers tomorrow.

Before I left, I spent several minutes (maybe 20) alone with Robert. His right eye was about half open and his left was open just a slit the whole time. He was looking around, appearing to assess everything around him, including me. He still has the ventilator, so he can't even try to talk. But he held my hand and squeezed it many times. He squeezed Jim's hand as well, which pleased Jim. He also held hands with his best buddy, John, today - which made John a little uncomfortable. They don't hold hands, you see. But it's the only way Robert can express his gratitude to people.

So, a little more alert for a longer period. Waking up is a tough job! He seems to be having a little difficulty swallowing. Luckily he is on a continuous feed directly into his tummy. But saliva is difficult for him to manage, so they suction still. And he doesn't like that at all.

Slightly better than yesterday. I'll take slightly better. That's fine with me.

Much love,
Susan

RSL's better half

14th August 2008, 10:38 PM

Oh, how I do love reading these posts. Lurkers, bless you! Regular posters, you are the best of the best people ever.

Well, tiny improvements every day. It's going to be a long haul. He keeps his eye/eyes open longer. He squeezes my hand. He's still paralyzed on the left side, but I have hope that will change eventually. Edit: he is being weaned off the ventilator. It should be removed tomorrow or Saturday. Janie has started a board for him to use when he's able. The doctors are getting nods yes or no from him. Honestly, I think he has surprised them!
So, another day of life checked off. And we go on. It's been 10 days now. Months - years to go. But I love him, and I know he loves me. We'll get through it.

Good night, All. I'll post more tomorrow.

Love,
Susan

RSL's better half

15th August 2008, 09:46 PM

Hi again, JREFers!

Some good news to report:
I spoke with the neurologist this morning, who was the one who ordered the CT scan a couple days ago. He was extremely positive! We talked about the weaning from the ventilator, the possibility of the traec, that the tummy tube is working out well, that Robert is more responsive, and then we got down to the CT. The blood has lessened a tiny bit. This means it has begun to be absorbed by the brain. The brain has shifted to the left about 8 mil due to the blood taking up room in the skull and the swelling on the right side of the brain. I asked what the shift means, wondering if it would cause more damage. He said that, at this time, he didn't think so. It just means it has "shifted," and he has instructed me not to worry about it. I must say that he sounded pleasantly surprised that Robert was awake already. But we have been cautioned that he could, at any time, go back to sleep for a few days.

I can tell you that when I arrived this morning, Robert was awake, and immediately opened both eyes, wider than before, when he heard my voice. He blinks a lot, but those baby blues are a wonderful sight! He knows who I am. He knew Janie when she showed up later. Recognition was all over his face. Trish came in about lunch time, and I think he opened his eyes for her, too, but I'm not sure. It was about that time I went to talk to the neurologist on the phone.

Later in the afternoon, when we were alone, Robert was able to communicate to me that he was irritated by the pulse monitor that had been placed on his right middle finger. It took a while for his nurse to come, and he was not happy about it. She switched it to the left and he settled down.

Just before I left, his Pulminologist came in. I know he told me this before, but it didn't sink in until today: the ventilator was never intended to help with his breathing. When stroke patients are in the "sleeping" stage, they can't control their own "juices." Sometimes, saliva will go into the lungs and cause a problem due to bacteria. Or, he could choke on it. So, the ventilator was meant to suction out his saliva from his mouth and brachia (sp?). This doctor also told me that the 2-week window on the ventilator is not "written in a Bible." If Robert continues to become more and more aware, and he appears to need a few more days on the ventilator, he could go for 16-17 days with no problem. This doctor would like to spare him the traec if possible. As he put it, "Why poke a hole in someone if it isn't absolutely necessary?" Uh, I agree.

And so ends day #11. More "wait and see," but more and more progress. God bless you all, and good night.

Hugs and kisses,
Susan

RSL's better half

16th August 2008, 09:42 PM

Hello again.

Well, I allowed the resp. tech. to get my hopes up that Robert might go off the ventilator today. Apparently, he didn't know the real reason Robert was on it (for suction, not breathing). Hopes were up and then dashed when the pulminologist reminded me what he said yesterday. I went, "Oh yeah." I felt rather small. Another couple days yet. Then we'll see. Wait and see. This is so hard, and it's only the beginning.

The good news is that he was more or less alert all day today. He would keep his eyes open as long as he could, and then close them for a while but I could tell he was still awake - eye movement under the lid, and he kept moving his right leg like he was exercising it. I gave him a good foot massage on both feet. He seems to like that.

I went to the P.O. box today and there was one card. Thanks, Grayman and the Mrs. I read it to him, and showed him a couple from a few days ago. I think I'll take a book to read to him tomorrow. If he's going to stay awake so long, I want to fill that time with something other than thoughts of being sick. I asked him today if he could believe that I can't think of anything to talk about. He just looked at me . . . with those beautiful baby blues!

12 days down.

Good night.
Susan

RSL's better half

17th August 2008, 09:45 PM

Day 13.

I went to church this morning (love poured over me), so I didn't get into the hospital until about 10:30. Robert was wide-eyed awake. He is now coughing quite a bit - which means his normal reflexes protecting his airway are working! One step closer to getting the ventilator out. Except that it's a pretty scary thing to watch! His whole body, and in turn, the whole bed, shakes. It is NOT a pleasing experience for him, either. If he does it more than once in, say, a 5-minute period, I ask a nurse or resp. person to suction his mouth and throat, then he settles down again. But he usually does it, like, once in an hour or two.

He had lots of visitors today. My co-worker, Linda, came by and visited, then took me to lunch. Mom, Janie and Trish came by after lunch. Robert's second daughter visited, too. I forgot to mention that his son visited yesterday. It is extremely important to Robert's recovery that his kids visit him, so I was very glad to see both. Then my friend Becky came by. We also had a visit from his primary doctor, who said they would evaluate Robert tomorrow to see if he's ready to be taken off the vent. He ordered blood, urine, and mucus tests.

I can't get in to see Robert between 7 & 8 am, so I'll be there at 8 am and will stay till 10 am tomorrow (Monday). I will go to work for 4 hours, then go back to the hospital. I need the distraction. I have become obsessed with "being there." I'll see how I do. I may just work half time this week, then go to full time next week. My employer has been very understanding through all this. But I have to go back full time sooner or later.

Robert's primary doctor also said that he is "doing great." This from a guy who was pretty gloomy a week or so ago. He said if Robert doesn't do well when the vent is removed, they will do the traech, which means the rest of his beard must go. I heard today that he's had a beard since 1981! Oh well. It will grow back. Small price to pay, I say!

Good night. Bless you all.

Love, Susan

RSL's better half

18th August 2008, 09:15 PM

Two weeks in.

Robert had a rough night. His blood pressure plummeted, and they had to actually put him on medication to RAISE his blood pressure, if you can imagine that! He was taken off that medication about midday, and was not given anything to lower his BP all day long. As far as I know, his BP is still stable with no meds whatsoever.

When I got in this morning, his breathing was extremely labored. The ventilator was set at CPAP level (the lowest), so they raised it a bit (from 2 to 10) and he settled down. I spoke to his primary to get his opinion about vent vs. traech. He said there are advantages both ways. The biggest advantage with the vent is that they can easily suction fluids. The advantages with the traech (and I'm still not sure of the spelling here, forgive me) are that it would be more comfortable for Robert and he'd have a wider air passage, less chance of fluid blockage. However, they cannot suction as easily with a traech.

I believe Robert is sick and tired of the vent. However, on the advice of my sil, Trish, I will leave the decision of vent vs. traech to the pulminologist. He has had a lot more education and experience than I!

The primary told me that what Robert has been doing since a week ago yesterday is highly unusual. He woke up earlier than expected (yes, he really did say that) and has been progressively getting better. After last night, "he should not be where he is today" - resting comfortably with BP controlling itself. But he appears to be fine now. Dr. Sudan was clearly flabbergasted.

You all know I am a Christian, so what I am about to say should not surprise, shock, or upset you. I believe Robert is still here by the power of Prayer and Science. When men of Science are astounded, I believe God has worked another miracle. Argue all you want, you will never change my mind on that.

Bye-bye to Beeg Seestor, Janie, who heads back to TN tonight. She will monitor the threads from home. She is completing the scrapbook for Robert from home, but she gave me his beard clippings because she didn't think the airline would allow a bag marked "Biohazard" on the plane. I'll put them in the book when she is finished with it and sends it to us.

Good night and God bless.
Love, Susan

RSL's better half

19th August 2008, 10:08 PM

Short post tonight. I want to get back to the hospital.

Robert has been having breathing issues for two days now. His breathing is extremely labored. He is sleeping a lot again. The doctors are too freaking "busy" to fill me in on what's going on, so I am going to the patients' advocate tomorrow and see if I can't get some help.

I left early today because I was so tired. Then I got home and could not get to sleep. Now it's 6 hours (and several phone calls from people wanting updates I can't give) later and I'm going to go back there. I'll tell you more about my reason later. Sorry to be so mysterious. But I did want to post something.

More later.
Susan

RSL's better half

20th August 2008, 12:47 AM

Update to tonight's update:

Man, I'm really tired.

OK. I heard from two people today that Robert's breathing problem might be related to the morphine he was being given on the night shift. I walked in on the night crew for the first time this evening. I'm usually there all day. I have been there at night, but left quickly for one reason or another (once I was kicked out). I had never met Eugene before - he is Robert's nurse tonight.

First, I made note of the medications in the IVs. Dextrose. Formula on continuous feed. And one of the "cillan" antibiodics (I didn't think it important at the time to right down the name, it was obviously antibiodic) - probably for his recurring fever. I confirmed with Eugene, the nurse, that these were all Robert was on. Then he said they sometimes sedate him with Ativan, or morphine if that doesn't work. I witnessed Robert's right arm moving about more so than during the day. According to Eugene, he is active at night. I guess his inner clock hasn't changed. My night owl.

I asked Eugene who ordered the morphine. He said it and the Ativan are a "standing order." That means the primary doctor probably ordered it. Something I will discuss with him.

Robert had a chest xray in his room (portable xray machine - first time I've seen one) today, then was taken for a ct scan about lunchtime. I asked Eugene to check the chart and confirm for me who ordered each. He didn't need to check the chart. The pulminologist ordered the chest xray (because of the labored breathing), and the neurologist ordered the ct. I then told Eugene how difficult the neurologist is to get ahold of and that he seldom returns calls. He said I need to be there between 6 and 7 am to catch him, so I'll be there tomorrow morning. He then said, "Don't quote me but . . . the ct shows slight improvement. You need to talk to the neurologist, though."

Then I asked who was on duty Sunday night and he said he was. I asked him to describe what happened and he told me the same story I heard from the primary doctor - After a bm, Robert's heart rate shot up and the bp plummeted. Eugene called the primary dr., who ordered dopamine to bring the bp up again. Robert has not been on any bp meds since yesterday afternoon when his day nurse took him off the dopamine. His bp got a bit low a few times today, but it is mostly in the "normal range."

Prior to this incident, Eugene had given Robert Ativan to try to sedate him. Here's the reason I'm putting so much detail here: Does anyone know anything about allergic reactions to Ativan? Eugene also pointed out to me a rash on Robert's right arm, just above the bp cuff, as a sort of "aside," well before he started talking about the Ativan/morphine standing order. Could that be related? This is another thing I will ask his primary dr.

Robert was being weaned from the ventilator. He was doing very well. Eugene now tells me the breathing problem started because Robert was being weaned too quickly - "he wasn't ready." To my recollection, Robert was on the "CPAP" mode all day Sunday. Could it have suddenly been a problem that night? This is something I will ask his pulminologist.

I spoke to Eugene about the fact that Robert jerks his left leg when his foot is tickled. He tried to tell me Robert has never moved his leg during the many baths he has given him. I asked, "Have you tried to tickle him?" He then tried. Robert moved his big toe. He tried again, and Robert jerked his leg. He was surprised, and said it looked like something therapists would certainly be able to work with. Something I will discuss with the elusive neurologist.

To sum up - it would appear that the news is good as far as the stroke is concerned. Now we need to find out what exactly caused the incident Sunday night, and if Eugene's opinion that it was too soon to wean him off the ventilator is correct. As for the bm, he had been on formula a couple days and had only had one small bm during the day Sunday, according to Eugene. But would that cause the bp to plummet and the heart rate to shoot up? Not sure who I need to ask this one, but I'll start with the primary dr.

I waited all day for three doctors to stop in to see Robert or to call me. None did. This will change beginning tomorrow. You don't want to piss me off.

I'm off to bed now. Gotta get up early. Nite, All.

Susan

RSL's better half

20th August 2008, 10:29 PM

Hi, Everyone.

For those who want an update, I'm about to give one to you. To those who are offended by this thread but are still reading it, quick! Turn down the volume and turn your head away from the screen! Sheesh.

Robert was still having trouble breathing this morning when I arrived at 6 am. I saw the elusive neurologist at 6:45, and he ran down everything for me, answering all my questions in his monologue. Neurologically, Robert is doing well. The latest ct showed a slight change for the better. He was concerned about Robert's breathing. He mentioned the trach. It is his opinion that Robert will be more alert, plus this would give us the oportunity to find out how well he can talk. He wants Robert to have more stimulation. I asked about the reflex after being tickled. He said reflexes are in a different part of the brain. Robert still has nerves that allow him to feel someone touching him on the left side, as well. His brain just is not able (at this time) to send the signal saying "move your left leg," or "move your left pinky finger." He said that anything could happen with rehab, though. Not that it will, just that it could.

I stuck around till the afternoon, waiting for the primary dr. He and I talked plainly. If I am willing to give him 24 hours after a test is done to give me the results, he will try to coordinate better with the other drs. I agreed. He knew nothing about the standing order for Ativan or morphine, but he agreed that Robert did not need either. He rescinded the standing order. I showed him the rash on Robert's right arm, and he had a nurse take care of it (it's a heat or sweat rash). I told him Robert's head, for the last several days, works it's way over to the left until the left cheek is touching the pillow. So, if someone is standing on his right, holding hands with him, they can't see his face and he can't see them. He had a nurse prop his head to keep it pointed more toward the right. Small victories.

I ran errands after that (picked up more mail and a stuffed baby Koala from Australia). I went home and rested (by getting on the forum), until the time window when I could catch the pulminologist when he paid his visit. When I walked into Robert's room, he was breathing normally - well, as normal as you can breathe with a tube shoved down your throat. Robert did all his tricks for the dr. without opening his eyes. I told him the neurologist's opinion on the trach. We discussed it at great length. It is reversible, the hole will close up leaving a little scar - which would likely be covered by Robert's brand-spanking new beard. It is "six to one, half-dozen to the other," but Robert will be more comfortable with it than the tube. So, he will talk to the primary, and we'll go from there.

When the dr. left the room, Robert reached out his hand, laid it on my shoulder and gave me a little shoove. I talked to him a little longer, and he did it again. The nurse saw it and said "He's telling you to go home and get some rest!" So, I did what I was told!

So ends day 16 . . . I think?

RSL's better half

21st August 2008, 11:32 PM

Not too much to report tonight.

I saw the Neurologist again this morning - this time at the decent hour of 9 am! He really is a nice fella.

I worked 4 hours today. Will work 4 hours tomorrow. If all goes well, I will go back full time next week. So I sat with Robert from 8 - 9:30, I think.

After work (from 9:45 till 1:45), I picked up a package and a few cards at the P.O. box - I got oatmeal cookies . . . mmmm! One of the cards was as home made as the cookies. When I opened it, a siren went off that startled me, and then I had to laugh at myself. I'm glad I opened it in the car and not at the hospital! Robert will see it later. Thank you, Card-sender - you know who you are. I got a kick out of it, and Robert will, too. I have been showing and reading cards to him as we receive them, but this one will have to wait just a little while.

Well, Robert's nurse called a few minutes ago and told me the trach will be done tomorrow, we just don't know what time yet. I will be looking forward to that.

I bought a wonderfully illustrated book about the human body today. I'm starting with the stuff about the brain and will work my way into the rest.

Mom and Trish came to see Robert. I had good company at dinner.

I'm off to bed now. God bless you all. And, thank you, Mr. Randi, for providing me with a place to put my thoughts and emotions, and for filling that place with such wonderful, caring people. More tomorrow.

Hugs and kisses, Susan

RSL's better half

22nd August 2008, 08:43 PM

Good evening, Everybody - or morning!

Robert has his trach now. It was a pleasure watching him sleep tonight. He still has the ventilator hooked up at the trach, but he was moving around the way he usually does in his sleep. It was so obvious that this is more comfortable. They will now slowly wean him off the machine. They have much more time now.

His primary dr., Sudan, came in and caught me watching Robert intently. He put an arm around me and gave me a little squeeze. I said that Robert looked so much better now and he said that he is much more comfortable. He was concerned that Robert may wake up during the night and have some pain from the surgery, so he put morphine back on the chart on an "as needed for pain" basis. He gave Robert a once-over, then patted my arm, waited to see if I had any questions, then went about his business. He has never touched me before. I think our talk helped. Plus, he's getting used to me, I think.

The nurses have been informing me whenever they give Robert any medication as to what it is and how much and what it's for. At least while I am sitting there, they don't call me and tell me when I'm not there, and I don't necessarily want them to - they call me for the bigger things like, he's out of surgery and back in the room. I saw Sudan talking to them like a teacher with his students when I left, and I assumed he was telling them about the proper care of the trach. I'm really starting to like these drs. Ain't communication grand?

So, now we wait for Robert to wake up. I told his kids tonight what to expect when they go to see him, and have asked them to try and engage him in conversation - get him to try to communicate with them. Simple questions like, "How are you feeling today, Dad?" So, we'll see.

I'm going to slow down on these updates now. I will send a report when there is something to report. Hopefully there will be something at least a couple times a week. Please remember to keep us all in your thoughts/prayers. You guys are just the best small town ever - a small town that encompasses the globe! Keep the cards and letters coming, too, will you? God bless you all. I love you!

Susan

RSL's better half

25th August 2008, 11:19 PM

Hi, Forumites!

Robert had a very good day on Sunday. We ended up watching the Olympics together, even though he was going in and out of sleep. We communicated a bit without him speaking. He can get his point across if he wants to.

This morning I learned that they had turned the ventilator down to the CPAP level again. (Cross your fingers it works this time.) I went to work, then back to the hospital. He slept through almost my entire visit. The good news is that he was breathing on his own with the ventilator only there as back-up, and he wasn't breathing really hard like the last time (this time last week). The neurologist is anxiously waiting for Robert to be weaned from the vent so he can start testing and stimulating him.

I saw the primary dr. as well. His big concern? Would I please allow the nurse to shave Robert's beard completely? He was concerned about hygiene around the trach. I consented. All the nurse could get was clippers, so he isn't clean-shaven yet. I'll take his electric razor (which seldom gets used except on his cheeks) to the day nurse tomorrow and ask them to finish the job. Boy, does he look different. I'm afraid his kids won't recognize him. He's had his beard since before his eldest was born.

It will grow back. Honestly, I really like the beard. I suppose I could get used to him without a beard, but I prefer the beard. I would not have believed that before I met him.

Small steps. Let's hope (or pray) there are no set-backs this time.

Love, Susan

RSL's better half

27th August 2008, 09:28 PM

Robert is off the ventilator, but they are still giving him oxygen through the trach.

He has some other minor issues that need to be taken care of before he can be transferred. He is not ready for a formal rehab facility - where he would have to be able to withstand 3 hours of physical therapy. So, he may be transferred to an acute care facility which, I'm given to understand, will work with him and get him to the point where he can then move to a rehab facility. I'll be taking a look at one tomorrow which his primary dr. has recommended.

Will let you know more when I do.

Love,
Susan

RSL's better half

28th August 2008, 10:44 PM

Robert is back on the ventilator. He's just not ready yet. He also has a couple other problems which need to be stablized before he can be trasferred to another facility, which they plan to do soon.

Where Robert is now is the Critical Care Unit of a regular hospital. What they usually do there is stablize the acutely ill patient until they can be moved to a regular room. Sometimes it's the last place the patient sees. It is not a place where the patient normally stays for 3 1/2 weeks. Robert's slow recovery will require a Long Term Acute Care Hospital. LTACH specialize in caring for acute care patients for an extended length of time, and they prepare the patient for the extensive physical therapy they will receive at a rehabilitaion facility. So this is like a way-station for Robert.

I went to the Acute Care Hospital where the primary dr. has said he would like to send Robert. My friend from work went with me. We were both very impressed with what we saw on our tour of the facility. It looks fairly new, and the set-up is similar to where he is now. They have a small ICU and less than 100 beds altogether. They do not handle emergencies - those are transferred to the hospital Robert is in now. They are a highly specialized hospital, and I am convinced Robert will receive excellent care there. In their regular rooms (which is Acute Care), there are 5 patients per 1 nurse. In ICU, the ratio is like where he is now, 2 to 1. I don't know which section he will be transferred to. We asked about a bariatric bed like he has now, and the nurse-tour guide said they can arrange for a "big-boy-bed." :) Our tour guide said their physical therapists will do things like getting the patient to sit up, feed himself, simple, basic things. When they release him, he will go to a rehab facility where he would get extensive physical therapy.

I spoke to one of Robert's high school friends last night about massage for the muscles on his paralyzed side. She is a state licensed massage therapist, and would be happy to help Robert. She will also teach me a few things so I can massage him when she can't be there. She will come to the hospital this Saturday, and, if the primary dr. approves her, she will get started. The hospital could be held liable, I guess, so she has to be approved. However, the primary dr. was the one who suggested massage.

I read to Robert this morning the section in last week's Swift where Mr. Randi talks about Robert and his "work." It was difficult to gauge his reaction. I can only imagine that hearing Mr. Randi use some of the words Robert has used to describe Mr. Randi was a bit strange for him. If you were to ask Robert who his idol is, he'd tell you: "James Randi."

Since Robert was more awake than he usually is when I visit, I also asked him to try to start making his awake periods longer. I asked him to start taking an active role in his recovery. I told him I was going to start getting harder on him, more demanding. He needs to wake up. That was this morning. This afternoon he slept through my visit when I got there after work. I can only hope a seed has been planted.

RSL's better half

29th August 2008, 09:22 PM

Robert was pretty alert for a little while this evening. He had just had a bath, and he usually can stay awake a little while after a bath. I saw some real frustration in his expression tonight. I asked him if he understood what had happened. He nodded yes. I asked if anyone had explained just what a stroke is to him (I realized I had told him a couple times he'd had a stroke, but I don't think I ever told him just what had taken place in his head). He shook his head no. So, I explained the bleed, and that the blood has to be absorbed into the brain and that it would take a long time, and that the blood was causing pressure and swelling on the brain because there was just too little room in the skull for the blood and his brain. I explained where the damage was, told him that was why he could not move his left side. Then I told him this is only temporary. I explained that soon he would be receiving therapy, and that I have heard about how some stroke patients have retrained other parts of their brain to do what the damaged area could no longer do. I said this was what I'm hoping for and that this is what I'm expecting. Then I again told him this is frustrating but ONLY TEMPORARY! His eyes opened nice and wide and he looked deeply into my eyes. The usual blinking stopped for a couple seconds.

I think I gave him some hope. At least, I hope I did. His demeanor changed for a few seconds. Then he went to sleep. He woke up a few minutes later and reached up and touched my face. It was nice, until his hand moved down to my shoulder and he started to give me a shove. I stearnly told him not to push me again - please. He stopped and stared at me. I leaned in and told him that if he was worried about me, stop. He wasn't going to be able to get rid of me. That I am there because I want to be. He fell asleep and I left about a half hour later.

RSL's better half

30th August 2008, 10:21 PM

Last Thursday (the 28th), Robert's neurologist came into the room before I left for work. He was very frustrated because he had ordered another CT and the technicians declined the order. He did not know why. He knew the primary dr. was planning to transfer Robert to the LTACH in a few days, and he wanted another CT before that happened. He asked me to speak to Administration. I told him I would.

After he left, his nurse asked me to wait and give the charge nurse a chance to get the problem resolved. I like and trust Jane, and said I would wait. When I arrived Friday afternoon, I asked his new nurse if the CT had been done. She said no. By the time we were talking about it, it was too late to catch someone in administration. But Christie, the new nurse, told me the hold up was on acount of Robert's weight. I thought this was ridiculous, because they had done at least 3, maybe 4 already in the 3 1/2 weeks Robert had been there.

That's when she told me the weight limit on the CT table is 400 pounds, and that Robert was over 500! I said, "What??!!!" And a few other words. Then she looked at the chart. The first time they did a CT on him (from the emergency room), he weighed-in at 150 kilos. Now he was weighing in at 287 kilos. I said, "He's been on a liquid diet for 3 1/2 weeks and has diarhea - and you're trying to tell me he's gained 137 kilos?" Then I asked how many pounds 150 k was, and she said about 300 pounds. Right! He gained 200 pounds is 3 weeks while lying in a hospital bed being fed introveniously. She said she'd look into it.

This morning, another new nurse (but with a bit more brains) told me the CT still had not been done. I informed her I was going to Admin and would be right back. I spoke with a really nice lady named Kim in Admin, who called the charge nurse, who said she was working on getting Robert weighed properly. I don't believe she was until I got Admin involved. Robert's new nurse sprang into action (not the charge nurse), got on the phone and requested a special hammock-type scale be brought to CCU. Apparently, the beds can weigh the patient, and they were going by what the bed said. When they got Robert into the hammock, they learned he was now 141 kilos. They were going to have to recalibrate the bed's scale.

Robert got his CT this afternoon. While he was doing that, I went shopping! I still had a couple gift cards from my birthday and I went out and blew them! So, yeah, I had a good day today. The icing was that Robert is obviously trying to stay awake. He will start to drowse, and then he will open his eyes wide. And, his nurse for today (I never did get her name, shame on me) told me that when the technicians brought Robert back she asked how the CT looked. She told me this is unofficial, but that the tech said there was a "big improvement" over his last CT. I won't cheer until I hear it from the primary or neurologist. But I can hope . . .

RSL's better half

31st August 2008, 07:30 PM

Official word: The CT showed significant progress. The Diabetes Insipidus is under control. Things are really looking good.

He was more awake today. He's even moving his lips slightly, like he wants to say something. (Probably something like, "Will you get out of here and let me sleep?!)

RSL's better half

2nd September 2008, 10:05 PM

Wanna talk progress? Today, after several days of me kissing him, Robert kissed back - twice! Now that's what I call progress!

RSL's better half

6th September 2008, 10:40 PM

So . . . today we had an informal meeting with the primary dr. and 2 nurses. It turns out that lack of communication is not the only problem we have. Misconception . . . on my part . . . has played a role. I guess I'm tired. I'm not sure what's going on in my head any more. It turns out that, once again, the good doctor has only my husband's best interest at heart.

Somehow, I had the mistaken impression that the LTACH was his idea. It was not - it was the idea of a caseworker, working for Robert's insurance company, who planted the seed of the LTACH (Long Term Acute Care Hospital) in my mind. He says I approached him with the idea, and he was considering it because I had mentioned it. The more I think about it, the more I wonder about what else I've gotten messed up in my mind. Dr. "Primary" is trying to keep Robert from going to the LTACH because he thinks it might not be the best place. He's had a lot of experience with this place. It would be his "last resort." Not that it's necessarily a "bad" hospital," just that it would not be an ideal situation for someone of Robert's age and circumstances.

He will reevaluate Robert's situation on Monday. He has also lined-up an evaluation from someone from the closest rehab facility, which is attached to the sister hospital to the one Robert is now in. It turns out there are a LOT of complications to consider. When the doc told me on Labor Day that this was good and that was stable, he was only giving me part of story. I took his positiveness as "Robert is stable." And he had told me that as soon as Robert was stable, doc would consider moving him to Kindred. But that was not what he meant. He freely admitted that communication is not his fortay (well, not in those words).

Doc spent an hour with Robert's family and me. I ended up closing the meeting by telling him that I will trust his judgement, because it is clear he is fighting for what is best for Robert. His opinion matters to me. However, I need better communication and I need to be in on the decision-making process. Doc was in the choir, saying the last part along with me.

God bless all of Robert's doctors . . . and the (for the most part) exceptional nursing staff. Doc will let me know when it's time to move him, and we will decide together where he will be moved to. I plan to be much more assertive with this particular doctor. I will force communication, and I will repeat to him what I hear him saying to make sure I'm getting it right. I am confident that he is giving outstanding care to his patient, my husband.

Borealys was right. A meeting between the doctor and family is a good thing.

RSL's better half

8th September 2008, 09:19 PM

Good news, Folks! Robert was evaluated by several therapists today, and the speech therapist has already begun her work with him! He is still in CCU, and blood tests revealed that he has another infection somewhere. They'll find it. But he will be in CCU until he is completely stable. He was much more aware and alert today.

Last night, his son and I took him a cd player and a handful of cds. His best friend will be bringing him a bit more variety. It appears Robert is enjoying the music! His eyes remained wide open throughout the entire mandolin quartet cd I put in. If you don't already know, he plays a mandolin - actually several - he has a collection. When that cd was over, I gave him a choice between three others. I told him to nod his head to show me his choice. He nodded at Tom Petty. Nurses were boppin' and hummin' along! I should have done this weeks ago!

Twice when we were alone tonight Robert looked as though he was going to stare a hole through me. Those beautiful blue eyes can surely take my very breath away. He wants so desperately to communicate. Soon, Baby. Soon.

:wave1 :yahoo :yahoo :wave1

RSL's better half

10th September 2008, 09:06 PM

HE'S AWAKE! :clap:

Holy cow! He's really awake now! Understands almost everything, reponds well, and is even showing his sense of humor! He loves his music, and was even mouthing the words to songs on a cd by The Band! :g1:

His high school girlfriend, whom he has stayed in close touch with over the years, came down from San Jose to see him. He even tried to tell her goodbye when she left, but his trach wouldn't let him. Hopefully they'll swap this trach soon for the kind with the button he can press when he wants to talk. She said he knew her immediately and was very animated. She made a photo album for him with pictures from their youth. He was much thinner at 18! And he had a big 'fro!

When it was just him and me, I had to force my eyes away so as not to stare at him. And, when I looked back, I caught him staring at me. He'd turn his eyes away as soon as I'd catch him. It was really sweet. When I left, I got another kiss. God help me, I'm falling in love all over again. :hug4

RSL's better half

11th September 2008, 07:33 PM

I don't think I told you guys the central line was taken out the day before yesterday. He is still getting IVs, though, in the usual way - a vein in his hand.

Robert was not as alert today. One of his work friends, the one who took our wedding photos, came to visit and brought a blown-up photo of the office gang. I was allowed to put it up on the wall. Robert barely acknowledged that he was there. At one point, his friend told him that I was a pretty special woman. I told his friend I thought Robert might be tired of hearing that and Robert shook his head intently.

I spoke with the primary. He has not ruled out the LTACH. Apparently, Robert did "ok" but not well yesterday with physical therapy, and today he didn't follow direction at all. Doc said he has requested physical therapy every day as opposed to three days a week as the therapist suggested. He still would rather avoid LTACH, if possible. He wants to try and get Robert's strength up so a rehab will take him. He said he never transfers anybody on a weekend, so he will reevaluate early next week. I tried to explain to him that the speech therapist seemed to think he did well the other day. He gave me one of those "I know better than you" looks that I will no longer tolerate and I told him he needed to talk to the therapist.

Doc explained that Robert will go through days like yesterday, when he is extremely alert - his high school girlfriend said he seemed to know her as soon as she came through the door - and other days when he is not so alert. It will be up and down for some time. I tend to agree, judging from what I've seen. That's ok. Slow is ok.

Love, Susan

RSL's better half

13th September 2008, 06:49 AM

I got a call at work yesterday from Robert's speech therapist. She was very excited. I think it was only the second time she has worked with Robert. She used my list of words to ask him questions - names of his kids, my and my son's names, names of his siblings.

HE SPOKE HIS ANSWERS.

He mostly whispered, but some sound came out sometimes. He still has just a regular trach - nothing made for speaking. At one point, he seemed to be getting tired so she asked if he'd like to try pen and paper. He said yes. But she said he wrote too quickly and his writing was illegible. I told her that's the way he always writes! Heck, his signature is just a scribble - normally!

When she got to the other side of my list of words, she began to ask things like, "What is JREF?" "What does SSB mean?" When he started about SSB, she could see he was tiring. So, she said they'd wait for her next visit to discuss that.

Before leaving, she asked if there was anything he wanted. "I want . . ." "What do you want?" " . . . a kiss." "From me?" she asked. He shook his head and said, "No! From Susan!" So she told him she would go call me and tell me to give him a kiss when I got there.

She called about a half hour before I left work. It took me almost 2 hours from the time I left work to get to him. I fought traffic in one direction to get to his P.O. box, pulling over to talk on my cell phone twice. Then I had double the distance I had just gone to get from the P.O. box to the hospital. I put all the cards, letters and packages down and went up to him and gave him several kisses. Then we went about the business of opening and reading mail and opening the packages.

All the nurses know me, and most of them have had Robert as their patient at some point. As I left for the evening, as the outgoing and oncoming shifts merged, all eyes (and smiles) were on me. Finally, someone asked, "Well? Did he get his kiss?" I said "He got lots of kisses!" The staff was elated!

RSL's better half

14th September 2008, 10:56 PM

Robert was moved to a regular room today. He will not be given a roommate, even though there is another bed in the room. Robert's bed takes up a good portion of the room, so I don't think they could get another patient in there. It's a nice room, without all the noise of the CCU. It's a much more relaxed atmosphere.

Here's the new game plan: Doc will call his doctor-friend at the sister hospital, which has a rehab facility attached, and ask him to reevaluate Robert. He wants to move Robert to the acute care department at that hospital, where he will continue to get the therapy he is now getting until he is strong enough for the rehab facility. I will go check out the rehab facility Monday. Doc is pretty impressed with this facility, plus Robert will get to keep all his doctors if he is transferred there. Until the sister hospital says they'll take him, he will stay where he is until he is strong enough.

After almost 6 weeks in the CCU, it was hard to leave. The staff is great, and they all love Robert. It was hard for them, too, watching him leave. I gave them about 30 printed pages of the thread I started about all this, because I wanted them to know Robert a little better, and who better to describe him than all of you?

The day nurse on the "surgical" floor is very sweet. She heard me telling Robert I needed to go home and get something to eat, so she brought me a tray! It wasn't too bad, either - chicken breast with like a Hollandaise-type sauce on it, rice and veggies. Fresh fruit cup for dessert! Not bad at all. She even invited me to stay over night if I wanted. If it had been a Saturday night, I would have taken her up on it. But, I have to go to work in the morning.

This has really been my day. My adult Sunday School Class gave me a huge poster-board get well card for Robert, signed by just about everybody in the class. Then I got a free full-body massage from Robert's high school friend who is a massage therapist. (I've never even been in a "spa" before, let alone gotten a professional massage!) When I finally got to the hospital, they gave me the good news that his condition has been upgraded and he was to be moved "upstairs." Then I got a free hospital meal and an invite to stay as long as I like. I saw another of Robert's high school friends who came to visit, his best-bud, John, and my friend, Becky. Icing on the cake - more kisses from Robert! Today was a really good day.

RSL's better half

17th September 2008, 09:40 PM

Just a note to let you know that Robert used a purple (his favorite color) stopper of-sorts in his trach today to use his voicebox for the first time in more than 6 weeks! Another major achievement! His speech therapist says he's doing G-R-E-A-T! The physical part is a bit harder, but he is working on it. She asked if there was anything he wanted to tell his wife, and he said very plainly, "Tell her I love her." I imagine he'll be telling me himself soon!

Love,
Susan

RSL's better half

19th September 2008, 10:19 PM

Hello, JREF Forumites.

Today I had my first conversation with my husband in almost 7 weeks. I was elated!

I was there when the speech therapist came in. As I told you in my last update, she's been putting a little purple device over his trach the last few days so that he can have a voice. He has only lasted 4 - 6 minutes at a time with it before becoming anxious and his blood pressure increasing. Today, he had so much to say to me that he lasted a full hour, and could've gone longer. He continued to try and talk to me after the device was removed and the therapist left. I didn't understand most of what he was saying, so he tried to write on a little whiteboard I got him. That, too, was difficult to understand. He kept trying, and the more he concentrated the better able I became to read what he was writing.

OK. A little heads up here: This is where you may need to grab a Kleenex.

One of the first things Robert said to me was "Thank you for everything you have done for me." I welled-up and said, "It's been my pleasure." This was the point when the therapist excused herself so we could have a private (sort-of) conversation. She informed both of us that she would be just outside the open doorway. We said a lot. She must've given us at least 15 minutes alone (sort-of). When she came back in, we were all very relaxed and jovial. Robert's sense of humor really came through and I got to see him smile big when he saw me laughing.

I finally told Robert today that the insurance company has been pressuring the doctor to send Robert to a nursing home. Doc says "Absolutely not!" I spoke to the insurance company yesterday and have been assured that it is the doctor's decision when Robert will be transferred and to where. But, I told Robert, he needs to become more active in his recovery, and not allow the therapists to do everything. That way, Robert will become stronger and the doc will have more to show the insurance company that he is just where he needs to be and he will be strong enough to go to rehab at some point. And, btw, I told the insurance company I wanted it in the "notes" in their system that whatever Doc says, I will support - if anyone says or does anything to the contrary of what Doc says I will fight it with every ounce of my being. The CS rep said, "Understood."

Doc even came in while I was there and I told him I had explained the situation to Robert, who also "understood." I had seen the physical therapists today, too. Both they and Doc told me I can help Robert get stronger by moving his left arm and leg just the way the therapists did. Robert told me it "Hurts," and I told him he will need to grin and bear it until it no longer does. (Now, before anybody gets too excited about Robert feeling pain in the arm and leg he cannot move - he can feel his left side, he just can't move it. The part of the brain that is damaged only handles the movement of them.)

So, Robert had a busy and lucid day. I had one of the best days since all this started. We got to have a heart-to-heart conversation! Robert now understands he needs to start moving. He also just learned that he's been in the hospital for almost 7 weeks - he thought it was a few days. So it was a wonderful and productive day! I can only pray that he continues tomorrow to be as lucid and willing as he was today, but will not be surprised if he is not. Keep the prayers and good thoughts coming, Everyone.

God bless.
Susan

RSL's better half

20th September 2008, 09:42 PM

So, today Robert was - which is it - upgraded or downgraded? He is now on a regular surgical floor. He moved from CCU to a floor where the care is a step below CCU on the 14th, and today he went to the surgical floor. No more monitors all over his chest for him to pull off! He's still got the trach with a small oxygen mask over it and some ivs.

The move was, like everything with Robert is, a big production - Robert in center stage. We also had a VIV (very important visitor) from our bank coming, so Robert was working very hard at remaining awake and aware. He answered her questions, signed some papers, then finally relaxed. What a huge day - very tiring for me, too! He recognized Mom this time and even talked to her at great length. Without the device over the trach it is extremely difficult to understand him. But he slowed down his speech and really concentrated and got several topics covered.

I wonder what tomorrow will bring? We are experiencing a very positve upswing here. May it continue!

RSL's better half

23rd September 2008, 07:32 PM

Hi, Everybody! {big wave}

I visited a rehab facility yesterday that would knock the socks off any other rehab facility in Southern California. It is fantastic! It has homey-looking rooms, and a structured environment which won't allow Robert to get lazy or procrastinate. It's reputation is exemplary. They have an acute care hospital (but no emergency room), as well as buildings for outpatients with various disabilities. I know it is the right place for Robert. If he has an emergency situation, there is a large hospital only blocks away.

I was worried about how we might pay for it, as Robert's insurance company does not have an agreement with the facility. However, I have discovered that my insurance plan does, and after adding him to my plan his care there will be covered 100%. It will mean my payroll deduction will more than double this year, but it's a small sacrifice for the excellent treatment I expect him to receive.

Until he can be transported to the new place he will have to stay in the hospital he's been in now for over 7 weeks. The effective date of adding him to my plan is October 1st, and his primary doctor says he's ready. He is very alert, though still a little confused sometimes. His buddy, John, made an analogy, and it made sense to me. Here is the Susanese version: Different parts of his brain are coming on line, kind of like a computer booting up. It won't be long before he is (mostly) back on line.

He got a new trach today, and the pulminologist says in a week to 10 days they will likely get rid of the trach altogether. He is lifting head and shoulders off the mattress in an attempt to sit up. He is coughing so well, everybody stands back, and the RT's are not finding anything when they try to suction, which is not very often any more. His speech therapist couldn't be happier with his progress. He can joke around better than any of us. All we gotta do is get his body moving!!!

I spoke with his primary dr. today, who told me that Robert would likely spend several weeks in rehab, then they'd send him home on an outpatient basis. I said "Several weeks? I was expecting months!" He said, "No. Not with the rate he is progressing."
{Better Half does a little dance and hugs Doc!} But we will know more once Robert is in rehab. Wouldn't it be something to have him home before Christmas?

RSL's better half

26th September 2008, 10:05 PM

Today, a woman from the rehab facility I told you about came by to evaluate Robert. He was asleep when she got there. I started waking him up, and she went to look at his chart. While she was away, I started describing the place to Robert. When she came back, she didn't want to see if he could do anything. She told him - not me - that he is "almost there, but not quite." She told him he needed to start exercising. She told him that once he's sitting up, things will start to come back quickly. He listened . . . intently.

When she left, he said he wanted to sit up. I told him that I have seen him raise head and shoulders off the mattress, so I know he can do it. So we practiced lifting his head and shoulders off the mattress with me as resistance - 10 times before I forced him to rest. I had to leave for a couple hours, and when I came back he wanted to exercise again. We lifted 10 more times, then I forced him to rest. He quickly fell asleep.

This woman will be back early next week. This time, we will be ready. Starting tomorrow, head and shoulders lifts and leg kicks (right leg) will be the order of the day. I will exercise his left leg and arm the way the therapists at the hospital showed me. She may turn him down again, but it will be the last time, I'm sure. Robert finally has the motivation. (I have a feeling that the motivation just might be the library I told him about in the rehab facility - it has a computer and internet access.)

RSL's better half

28th September 2008, 08:30 PM

More good news, Folks!

A little determination on my part, along with loads of cooperation on the part of Robert's nurse for the day, and the ingenuity and knowledge of hospital equipment available of a CNA (Certified Nurse's Assistant), Robert sat up for the first time today!

:yahoo :yahoo :yahoo :yahoo :yahoo

They had a "table" which could be raised or lowered to the bed's height and placed alongside the bed. They then slid Robert onto the "table" and strapped him down in two places and raised side guardrails. Then, they converted it into what looked like a recliner - with Robert strapped onto it! It was totally amazing! There were 5 or 6 guys, two nurses, a CNA and an RT (Respiratory Therapist) in on this operation! He stayed in a sitting position for about 30 minutes, then had me call for help to get him back into the bed he's been in for almost 2 months. The "back in bed" production was not as big - 3 staff guys, a security guard, the CNA and the RT.

hcmom came by earlier to help me exercise him, too. With her help we did leg lift/knee bends and arm raises, then some head and shoulders lifts. So, by the time the chair-sitting was through, Robert and I both were exhausted! He went to sleep and I came home!

Tomorrow, JPL (Robert's brother) is coming up to spend the day and help out with Robert's exercises. hcmom will be there in the early afternoon as well for a round of exercising. I will supervise and get a much needed break. Tues and Wed, his sister who lives in the LA area will be by to help and I'm hoping I can recruit a couple other people. I want to do 2 sessions of exercising a day, and the "chair production" each day for as long as he can stand it. I'm hoping the rehab facility rep will be back Wed for another evaluation. She can't possibly turn us down this time!

Robert was such a trooper through the whole thing! I can't believe how strong he is becoming! I told him today that if I ever had any doubts about his recovery he just dashed them all away today.

RSL's better half

3rd October 2008, 10:19 PM

Well, he's been rejected by the rehab facility again. They claim he's "too low level." This judgement was based on the "notes" of the hospital's Physical Therapy team. This "team" has consistantly treated Robert like a permanately bid-ridden patient who just needs muscle movement to keep from cramping up. They rarely challenged him, and yet put in their notes that Robert did not respond to commands. The only "command" I've ever heard one of them give is, "Press your left foot against my hand." DUH! They would spend 10 minutes with him two to three times a week - how do they know what "level" he is??? They didn't even know he could talk!

I told the head of the department yesterday how I felt about the treatment her staff has been giving Robert. Robert's best friend provided moral support and focus. Robert's PT session today (he will now receive therapy 6 days a week) went extremely well. He really showed these "therapists!" They had him sitting on the edge of the bed, helping him balance while giving him instructions for movements. I had to turn away for a couple moments in tears. The charge nurse hugged me and I said to her, "I knew he could do it! They thought I was just a crazy wife with unrealistic expectations!" The entire nursing staff on that floor was at the door to Robert's room, watching the session with huge smiles.

His best friend and I gave him a mild workout at lunchtime. I had him reading aloud from back issues of Swift when the PT folks came in. He had a really good session with PT. And a couple hours later he was helped into the Geri-chair (the gurney-like table that converts to a recliner-like chair), where he spent more than an hour. One of the brakes on the chair was left unlocked, and Robert played the last half hour or so, moving the chair around in place. He had no idea that he was also exercising when he reached out for things to help him move the chair around.

At several people's suggestion, I asked the charge nurse to see if she could get Robert a "trapeze." This would be something suspended over the bed which he could reach out and grab and pull himself up with. By the time I left my snoozing hubby she told me she was hoping to have one up before I come back.

A lot was accomplished today. You should've seen the pride on his face as the charge nurse praised him and told him he made her day.

The rehab facility says that Robert "must withstand 3 hours of therapy (combination of physical, occupational and speech) per day." pa-shaw! Piece of cake!

RSL's better half

5th October 2008, 07:41 PM

I need to get back to 8-hr days at work. Is there anyone who would like to volunteer to sit with Robert during the day for a couple hours? Now that PT is doing what they should 6 days a week, we don't need to give him PT. I just want someone to occupy part of his day so he doesn't get bored. Please PM me for directions.

RSL's better half

8th October 2008, 10:07 PM

The latest: Robert's pulminologist will plug his trach tomorrow, forcing him to breathe through his nose and mouth. He will be moved to DOU where he can be monitored for 24 hours to see how he does without the trach. If all goes well, the trach will come out on Friday. Then, a waiting period of 48 hours before they begin to introduce food - liquids first and so on.

I have been speaking with the assistant to the Medical Director at the rehab facility. I explained my opinion that the Physical Therapy Dept in the hospital has unfairly evaluated Robert. Robert's case worker (who up to this point has been pushing for Robert to go to a nursing home) listened to my complaints today and has taken my side. She was going to fax the latest PT notes to my contact, and include some notes of her own that she believes Robert is ready for rehab. My contact at the rehab will also set up a conference call between her boss and Robert's primary physician, who is also of the opinion that now is the time to start talking transfer.

I'll keep you posted.

Hugs, Susan

RSL's better half

12th October 2008, 01:29 PM

I know it's been a few days since my last post, but I wanted to have something to report. I don't have too much, but here goes:

He was moved to DOU, to a room off in a corner but where he gets constant care. He made it through the 24 hour waiting period with no problem. But when the doctor tried to remove the trach he discovered that Robert's skin had sort-of grafted itself to it. He's only had this trach for a couple weeks, and dr. was not expecting this. He said he would have expected this to happen to the last one which had been in for several weeks, but it didn't happen then so he certainly didn't expect it to happen now. So, now Robert has to go through surgery to have it removed. And, because the area could bleed and drain into his lungs, they will replace it with another trach and wait a few days (maybe 3) and do what was originally intended - remove the trach and let the hole heal itself.

So, as of last night at about 7, Robert was to have surgery today. We did not know what time, so the staff suggested I arrive this morning between 7 and 7:30. Robert and I waited 3 1/2 hours to be told the surgery would be tomorrow (Monday). For Robert, this means he still cannot eat or drink until the end of this week at the earliest. Now that he is "aware," not being allowed to eat or drink is difficult to accept.

Now I'm thinking it was a good thing that the PT staff has held him back - but for reasons that have nothing to do with them. It looks like at least another week in the hospital.

I had my first "night out" on Friday. Robert's mom and I had dinner and saw "Gypsy" at the community theatre. We stopped in and saw Robert before going to dinner and he was actually very lucid and was very much the old Robert. Forumite, Gilmar, sat with Robert from about 3 pm until 8 pm for me. They had conversations about a range of topics and Gilmar read a Sherlock Holmes story to him. Turns out they had things in common. Robert says "he's a pretty good guy." I agree. Thanks, again, Gilmar. You're terrific!

Since Robert will be in the hospital probably all this week, I am again asking for volunteers. hcmom and Gilmar are the only ones who heeded the first call. I have to work. I have no choice. Is there anyone in our area who can give Robert a couple hours of their time during the day?

RSL's better half

15th October 2008, 10:18 PM

Robert came through the surgery just fine. As a matter of fact, they removed the replacement trach today. He is now back in the "regular" room he was in before he was put in DOU. He seemed upbeat, though still not making a lot of sense.

Again he tried to get me to help him stand up and walk. This time I told him I'd make him a deal: if he moved his left leg, I'd help him get out of bed. I had to tell him several times that I won't help him get up until his left leg is moving. I explained that the rehab was where they'd teach him how to use the leg and his left arm. He would appear to be contemplating what I said, then go right back to planning how he was going to get out of bed. I finally told him I was tired and needed to sit down and did so. But I did tell him I was very glad that he wants to stand and that I hope he'll do whatever the therapists want him to do to get there.

So now the next hurdle is the swallowing test. Doc said a few days after the trach is out, so we have to wait. I imagine my next post will be about the test after he's taken it. Maybe when he gripes about the hospital food, things will seem a little more normal.

RSL's better half

17th October 2008, 10:04 PM

Posting a little earlier than I expected because there is good news . . . no, great news . . . no, HUGE news!

I told you in my post on the 8th that I had spoken with the assistant to the Medical Director at the rehab hospital. I have persisted in my contention that the PT dept at the hospital had dropped the ball on Robert and was holding him back from getting into rehab. My persistance, as well as the persistance of Robert's PCP, has finally paid off! It is now just a matter of when the rehab hospital I have chosen will have a free bed. Robert will begin true rehabilitation in a matter of days!

Don't know if or when the PCP will do the swallow test. That may get done at the rehab.

I am so happy . . . so pleased . . . so relieved! My biggest hurdle so far has been cleared. Now the hurdles are all Robert's. But I will be there to cheer him on!

Oh yeah - more good news: Robert's left arm muscles have been quivering after PT. This is a GOOD sign that there is something there to work with!!!

Ten and a half weeks and counting. Here we go . . .

RSL's better half

26th October 2008, 11:58 AM

Almost 12 weeks now . . .

The approvals are all in, Robert is healthy enough, we're now just waiting for the paperwork to go through, which should happen tomorrow (Monday). Rehab hospital, here we come!

His PT sessions have been very promising. Therapists still have to get him into a sitting position, but once he's there they let go and he sits on his own. When he starts to lean, they remind him to counter and he does. A therapist I'd not met until Friday's session said that there is not only "resistance" in his arm and leg, but actual muscle movement. I didn't see any when she worked with him, but she had her hand in strategic places while working with the arm and then the leg and she could feel the muscles trying to move. She felt thigh muscles tighten as she bent his knee and pushed toward him. He also gave a yell in pain, so I thought at first she was feeling a reflex, which, I'm told, comes from a different part of the brain. She assured me it was not reflex, but Robert trying to move his leg. She's worked with him a few times, and the last two he's apparently been a lot more cooperative and compliant to her commands. Everyone is saying he is definitely ready now for more intensive treatment - everybody that is, except for Robert, who isn't so sure he wants to go through all that pain! I wish he didn't have to, but he does have to.

There is still no way of knowing how much of his left side Robert will get back. We don't know if he'll walk out of the rehab, or end up in a wheelchair. I am a planner, and all this "not knowing" has been very difficult for me. First, not knowing if he'd survive the first 72 hours. Then, a week later when he started to show signs of recovery, hopes were high. A week after that, hopes were dashed when he suffered a set back doctors said he should have died from. Then it was, will he wake up again, or will he end up comatose? He slept, with occassional semi-awareness moments, for a month. When he began to wake up again, he was finally moved out of CCU. Finally, I could start to plan, I thought, because physical therapy will begin and we'll see what he's capable of. Here we are, 6 weeks from that point, and I've learned I can't plan anything. I still have to wait for Robert's brain and body heal. And I don't know how long that will be.

However, because I am a planner, I have begun to look at expenses for our "worst case scenario." If he comes out of rehab in a wheelchair, what will a power chair cost? What about a converted van? Where will we live? If he ends up on permanate disability, he won't have the income we're used to. It's daunting, I can tell you.

We discussed our goal this weekend. Our goal is to get him to the point where he can walk into TAM7. Which leads me to a shameless plug. Please visit Chillzero's website at:

http://chillzero.blogspot.com/2008/10/fundraising-for-robert-lancaster.html

Yes, we could probably use the money, but that's not why I want you to buy the items on offer. I want to see as many SSB and "Dark Entity" shirts and hats in the conference room at TAM7 as possible! There is internet access at the rehab, and he will be back home well before TAM7, so there is no way to keep this a surprise for Robert. JREF Forumites (and folks on other skeptical sites) have contributed a lot of money for Robert's medical expenses, and I am ever so grateful! I want your purchase to be a show of love and respect for the man himself more than a donation. Can we unite in this way? The first batch order is October 31st. I hope you will consider this gesture - and wear your support at TAM7!

God bless you all. I love you - including all you other "interested parties" at other sites where my posts are being copied to. Your outpouring of love has been overwhelming. I can't thank you enough.

Hugs, Susan

RSL's better half

28th October 2008, 08:06 AM

Robert moved into his new home for the next several weeks last night. His room is 2 1/2 to 3 times larger than his hospital room was. He has a roommate who didn't say much while I was there. He has a "big boy" bed - it's longer than the one he spent the last 12 weeks in, but narrower. He seemed to be quite comfortable. He has a TV on a bendable arm which he can bring right up to him in bed. There is a built-in dresser/closet/shelves in a corner that has a pull-out table or desk. It will be perfect to put the laptop he was given at TAM6 on. I was told there is internet access in the rooms - I will double check on that.

This morning he will endure a series of evaluations, among which will be the "swallowing test" he's been waiting for to determine if he can eat more than popcicles. I will head out shortly to join the "festivities." Today we will hear from the experts what he is presently capable of and what their expectations will be. They will also be telling him what he needs to be doing over the next few weeks and setting goals. This is my time to step down a bit. I've had a lot of control over his life the last 12 weeks. This is where he begins to take control back.

The physical/occupational therapy room, what I like to think of as the "gymnasium," is right across the hall from his room. I know I saw the speech therapy room, but can't remember where it is. There is a communal room down the hall, across from the nurses' station, which is like a comfortable livingroom. Practically next door to his room is a patio or garden area. I remember it from my tour weeks ago. There are several different surfaces to learn to walk or navigate a wheelchair on, as well as beautiful plants and flowers.

His nurse last night was very friendly and understanding. At one point he told Robert he was going to put a pillow under his left knee to help alleviate the aching he felt from being moved so much. Robert refused to allow it. Rom was extremely patient and kind, and said "Tonight, you may have it your way." To which I added, "But tomorrow you need to start letting the experts do what is needed, even if it hurts at first." He was OK with that . . . but he'll forget that today.

Everything he will endure today will likely exhaust him. At some point, he will need to go to the nearby hospital to have his feeding tube removed. Don't know if that'll be tomorrow or just when. I wish that had been taken care of before we left the previous hospital. But we will deal with things as they occur.

Here we go . . .

RSL's better half

5th November 2008, 11:30 PM

Last night our case worker gave us some news. Whether it's good news or bad depends on how you look at it.

The rehab has given Robert a week and reevaluated him. They do not feel he is ready for their level of therapy just yet. The insurance wants to send him to a "sub acute" hospital - a nursing home. On it's surface. this news seems bloody awful! This is exactly what I was trying to keep Robert away from. However, if he isn't ready, maybe this agressive therapy could hurt him.

The plan is to send him to a place which understands he is to be helped to get to a more acceptable level, and then he will return to the rehab. The rehab doctor thinks Robert needs 30 days of lower-level rehab, and then he will reevaluate. They apparently "rate" their patients each week on a scale from 0 - 7, and Robert is all 0's and 1's. He needs to be at least at 2's and 3's. The thing is, he has improved so much already. They have made significant progress with him. But he started out way too low, apparently.

The case worker told us he would be sent to one place - that place turned him down for lack of "equipment and personnel." So now she has submitted the case to 4 other places and we are awaiting their answers.

In the meantime, Robert is now realizing the difference between reality and his fantasies. He's eating real food and feeding himself. His fingers on his left hand are now "conditioned" to straighten, sometimes before I even touch them! He can now roll from side to side for the nurses to clean him. The catheder has been removed. He's taking medication orally, instead of through the g-tube. He is sitting up in a wheelchair for longer and longer periods, and has learned to hold his head up. And there's so much more. I am of the opinion that he is where he is BECAUSE of the aggressive treatment, but I'm not a therapist or doctor.

Robert made a comment last night that he thought he might need the extra time in a less demanding environment, so I acquiessed. The case worker made a point to tell him that he had not "failed" - that he just was not ready yet. He said that, while that may be true, he still felt like he had failed. But, if the people who know this stuff think he needs this extra time, sobeit.

So, we will await the outcome of the case worker's search and take the learned people's advice. If it's a set-back, OK. We've dealt with set-backs before, we can do it again. We just have to work that much harder. I'm so tired of fighting. I'm just so tired. I'll bow to their opinion . . . for now. If I don't see results in Robert at the new facility within 2 weeks, the rehab will get sick of hearing from me and bring him back. I'll take two weeks to rest and regroup. Then I'm back in the fight. Because I cannot give up on Robert. And I will not let anybody else.

Don't anybody tell me how lucky we've been, please. I think I just might scream.

Dear God, I am soooooo tired.

"And that's the way it is . . ." November 5th, 2008. (Does that quote date me? I'll bet it dates me. But only with those who are as outdated as I am, 'cos the young 'uns don't likely know it.)

RSL's better half

7th November 2008, 10:51 PM

Robert moved into his new home for the next 30 days. It's not so bad. I met his therapists, and am pleased with the goals that were set. If all goes well, Robert should be able to get out of bed and into a wheelchair, and vice versa, on his own, within 30 days. Along with that, he may be able to go to the bathroom on his own. We shall see. That should be enough for the rehab of choice to reevaluate and accept him back.

Today he was hoisted into a wheelchair and I pushed him into the dining room, where he ate regular food and was allowed regular milk (instead of "nectar" or thickened milk). I think he felt more "normal" than he has in a while - except that he was being scrutinized by his wife and speech therapist!

The place is 50 miles from work and home for me, so I won't be going to see him as often. But that might be better anyway, as he won't get so distracted from his PT homework. For now, I have the weekend and Mon and Tue off, so I'll help him transition.

RSL's better half

10th November 2008, 12:00 AM

Just to let you know that Robert is still making small steps toward recovery. There is something new he can do every day it seems.

His brother, Jim, sister, Trish, and Mom all visited today. Robert thrived as the center of attention. That is, until talk turned to Thanksgiving plans. He looked right at me as the others talked and planned. He knows he won't be there, and I think that bothered him (though he would never say so). The saddest thing is that all of us would rather he was there with us. For now, he will have to be content with leftovers the next day.

His physical therapist on Saturday was pretty tough on him. But he made one comment that resonnated with me: "He has to want this." I can only hope and pray that he begins to show the kind of determination it's going to take - clenching teeth through the pain, pushing his body harder than he ever has and beyond the limits he thinks he has. I can't give that kind of determination to him. No one can. He has to find it himself. Oh, I'd like it if he did it for me, but it has to be for him.

That's all for tonight. Thanks for giving me this space. Not sure what I'd have done without it now.

God bless and good night.

RSL's better half

13th November 2008, 10:58 PM

D.S., thank you soooooo much for the laptop you gave Robert at TAM6! It sure is coming in handy. I wish I could leave it with him, but it would likely be stolen. So I will cart it around with me whenever I go to visit him. (Thankfully it's a compact one.) He sure seems to be enjoying it.

One of his coworkers dropped in on Tuesday. She had called the facility the evening before to ask how he was doing and if it was Ok for her to visit, I guess. The nurse told her to hold on a minute, then took the phone to Robert so he could talk to her. She got pretty emotional about it. I know I've told people he can talk fine, but actually getting to talk with him is, apparently, an emotional thing. Others have reacted similarly. I must be jaded.

So, he's been in the "nursing home" for a week now. I can't believe the difference in him. He still isn't as "gung-ho" as I wish he would be about therapy, but then, that just wouldn't be Robert. His attitude is changing, though. His speech therapist is telling him what I've been telling him for weeks about doing whatever the therapists want him to do, and it is just now sinking in. He may not be "Hoo-Rah" about it, but he is trying to follow the advice he's being given.

Yesterday (Wednesday) was the first day I have not gone to see Robert. After work, I ran errands then went and got my hair done. I'm glad I had some "me time," but I didn't sleep well last night. I'm hoping I'll sleep better tonight, since I just got home after seeing him. Tomorrow I'll be able to do some things that need doing as well. But I have not had 8 hours of sleep in one night since this all happened. At least it isn't as bad as when my mom died. I don't know what I was running on back then, but it wasn't rest.

I know, I know. I need to take care of myself. I'm trying. My friend, Becky, is going to a play with me on Sunday. A chick's day! Maybe we'll even grab a bite to eat. We'll see.

Good night, Good People of the JERF Forum! Thanks for listening to me.

RSL's better half

18th November 2008, 10:45 PM

Let me just catch you up on this "fast-paced" life of mine:

Saturday night I left Robert and began what I thought would be the usual hour-long ride home. However, due to all the fires in the area and the closing of several stretches of freeways, thousands of people poured onto the very freeway I had to take to get home! It took over two hours to get home (50 miles)! Yuck! (On Sunday the fires came as close as a neighboring town from where we live, but then moved back.)

Sunday, I went to church for the first time in three weeks (mainly because of all the moving around Robert's been doing). Also on Sunday I met my BIL for brunch and discussed business matters, then met my friend, Becky, and went to the play we had tickets for: Wait Until Dark. Wow! Good story - I remember the movie with Audrey Hepburn (1967, I believe). It was a pleasant surprise to have such a professional production at our little community theatre - acting was wonderful, direction, sets, lighting, etc all fantastic! We really enjoyed it. We grabbed a bite at a small gourmet restaurant not far from the theatre. Nice gal-pal time!

I went to see Robert today (Tues). Took a half day off work. Had some good, quality time with my hubby watching the National Geographic Channel. His physical therapist did something a little unconventional with him that he has apparently been doing for a few days. He sort-of jerry-rigged a walker and suspended Robert's "bad leg" on it while Robert was laying in bed. He had Robert move his good leg and hip to start a pendulum-type movement with his left leg (the bad one), and then Robert used his left hip to keep the momentum going. Being suspended like that makes his leg seem less heavy, I think. I watched as he helped Robert, at first, bend his left knee and straighten it out. Then I watched as Robert moved, ever so slightly, his left knee up and down on his own! I certainly saw his left hip moving. I had not seen him move that leg at all until now. It was only a tiny bit, but it was something!

I spoke with the therapist outside Robert's room after the session. He assured me that Robert is definitely trying, which is something I was concerned about. He still believes the goal of getting Robert to get out of bed, into a wheelchair and back to bed again on his own in 30 days is attainable. He spoke about improvements - slight but definite improvements - Robert has been making. He told me something that surprised me. He said Robert's cognitive problems were making the physical things tougher. I had thought his cognitive abilities were pretty good - except for some confabulations. Not only does Robert have to really work through the pain, but apparently some fears as well. Robert sat up in a wheelchair for about 4 hours also today, which was fantastic. So good news mixed with challenges. But he is making progress. That's important.

Good night, All!

Love, Susan

RSL's better half

22nd November 2008, 07:48 PM

Just wondering . . . is there anyone who has not noticed a little thread with my name on it but from someone else . . . it's called "it's me"

http://forums.randi.org/showthread.php?t=128635

RSL's better half

28th November 2008, 08:34 PM

I've decided to share with you all an email update I sent to our family and friends who do not read these forums. I have many reasons for sharing this. One is that you all should know what I've been saying about you.

"Dear Friends and Family:

I've been whining a lot lately about the very slow progress Robert has been making. There is only a week left before the rehab of choice comes back to reevaluate him, to see if he is ready for their aggressive form of therapy. I'm not an expert, but I don't think he's ready. What does this mean? Everybody keeps talking about a short window of time in which to get him rehabilitated to the point where he will pretty much be for the rest of his life. I feel the window closing and it makes me so very sad.

However, that having been said, I've decided it's time to quit whining and be thankful. He "could've" died when it happened on Aug 4th. He didn't. A week later he was waking up, showing great gains, then had that freakish thing happened when his blood pressure went way, way down and his heart rate shot way, way up. He "should've" died then, according to three doctors and an RN. He didn't.

He can talk. He can tell me he loves me. He can hug me with his "good" arm. He can still make me laugh! He would still give me the world if he could. My Robert IS STILL HERE. I'm thankful for that. (My Aunt Patty would be telling me it's about time I started looking at the positive!)

I'm also thankful for the love and support of my friends and family. My church family has been with me every step of the way, my pastor always ready with his wonderful hugs. Robert's mother, brother, sisters, bothers-in-law and sister-in-law and I have become quite close. I always knew they liked me, now I know they love me as much as I love them. My son has been doing his best to help me when he can - like relieving me of most of the household worries (except the bills). Robert's global friends-via-internet have also enfolded me in a blanket of pure love. They have raised money, given me a place to journal and at the same time keep them aprised of Robert's progress, poured love over us both with kind words, cards and gifts, and brought Robert's website, now at www.StopSylvia.com, back to the position it was in a Google search on "Sylvia Browne" before the stopsylviabrowne domain was taken over by someone else. (Most Google engines put www.StopSylvia.com in third position - below two "official" Sylvia Browne sites.) Some of these online friends have even come to see Robert, some even giving me a break to do something for me from time to time.

So, today, on this day when we traditionally express our thanks for what we DO have, I'm making a turn. I'm taking whatever I'm given as far as Robert's recovery, because it's more than perhaps I could've been given - oh, so much more! This Thanksgiving I have more to be thankful for than any Thanksgiving in the past.

God bless, and happy turkey-eating!

Susan"

Today, things took on a whole new light.

Robert's bother, Jim, and his wife, Rachel, came over to help me go through boxes of stuff Robert has collected over the years to see if there was anything that Rachel could sell on EBAY for us. Afterward, we went to see Robert.

We all visited with Robert for a while, then his speech therapist came in. We learned a lot from her this time, the most important thing being that Robert's inability to get motivated is directly related to the stroke. He is also unable, at present, to prioritize things in his mind by importance. While it may appear that he has a selective memory, it's just that he can't distinguish what to remember. I am to tell him, "I want you to remember this" before I tell him something I want him to remember, and have him repeat it, then ask him before I leave what it was I asked him to remember.

As Robert and I sat at some outside tables where Robert would have his lunch, Jim and Rachel said their goodbyes. Shortly after we got back to the room, Nils, the physical therapist came in. [Ok, this is where the "whole new light" comes in.] Since Robert was already in his wheelchair (he'd been hoisted into it by a Hoyer Lift), Nils began a series of wheelchair-related exercises. The next thing I knew, Robert was WHEELING HIMSELF around obstacles in the room and out into the hallway where Nils had him going forward and backward in the chair. He uses his good arm for propulsion, and his good leg as a rudder. It was utterly fascinating! I had no idea - I mean, he had said he had learned to operate a wheelchair, but I didn't completely believe him.

Yesterday, when Robert's mom and I brought him leftovers from Trish and Larry's Thanksgiving feast, I had "the talk" with Robert again, about getting motivated, working hard through the pain and not stopping. Today, Jim told him about the rehab from his knee surgery and how he had struggled through the pain with determination to get better. And so, when Hosea, the occupational therapist, handed Robert a dumbell today (his right, good arm) and told him to lift it this way or that way for a count of whatever, Robert met and exceeded the count, sometimes doubling it - all the while looking straight at me!

One more thing: Nils gave us a "realistic" talk before he left us today. In a very nice way, he talked about how the left leg had not progressed in the way he had hoped it would. He talked about the various types of wheelchairs available should one become necessary, but it sounded like one would be necessary. He said anything could happen, but left me with little hope that Robert's left leg would recover. This I pretty much knew, but he has confirmed it. So what? We will learn to live with a chair! Nils is still confident that Robert will learn to get out of bed, into the chair and back again. If so, and from what I saw today I am more confident that it will be so, he will also be able to be taught to go to the bathroom on his own, take a shower on his own, and to do other daily-living-type activities. He is already adapting a lot. I didn't see that until today.

I will be using the $15,000 raised by the "Skeptics Unite" fundraising account as a downpayment on a van converted for wheelchair accessibility. It will be one Robert can ride his wheelchair up into, then into the passenger position (seat removed). It's a couple months down the road yet. A new van would cost about $30,000 - $40,000, so I will likely be looking at a used one. I wanted you all to know how much was raised, and what I have decided to use it for. And again, let me express our deepest thanks to all who have donated, and those who continue to donate to the Skeptics Unite account and in the purchase of t-shirts, hats, magnets, etc. This purchase would not have been possible without your donations.

So, Kaz, Sylvia, John, James, Benny, Peter, Kevin, etc., it would appear that you have something to worry about. You should have prayed or done whatever you could to see that this man recovered enough to have to go back to a 40-hour work week. It's looking more and more like he will have plenty of time to devote to trying to stop you from profiting off the weak and desparate. Better days are ahead for Robert Lancaster, but not for the parasites.

Good night and God bless.
Susan Lancaster
A Hero's wife

RSL's better half

8th December 2008, 07:54 AM

Just a quick update before I fly out the door and off to work:

The head of therapy at the place Robert is in has obtained a 30-day extension on Robert's in-patient therapy. This doesn't necessarily mean he will still be in the nursing home for another 30 days. It can include a combination of there and my rehab-of-choice. He told us on Saturday that Robert is not ready to be moved to the rehab facility yet. He confirmed to me, however, that his team's goal is to prepare Robert for the other facility. He does not want to keep Robert there any longer than necessary.

The entire staff is trying to motivate Robert. He is 25 - 45 years younger than most of their patients and they want him to recover and get out as soon as possible. But, he will stay there until the head of therapy decides he's ready for the 3 hours of intensive therapy per day he will receive at the other facility.

Robert is quite comfortable where he is and has bonded with his therapists. He would rather not go to that other place where everybody expected so much from him. I'm hoping that, between the staff and me, we can make him understand he needs to expect more from himself.

We had a couple more JREF visitors on Saturday. It was a very nice visit, and Robert was "on" with his sense of humor. He had us laughing loudly.

I will continue to keep you informed whenever there is something to report.

Much love, Susan

RSL's better half

13th December 2008, 07:08 PM

Hello Everybody.

Robert appears better every time I see him. I'm still having to nag and remind him about things, but he's getting better. Even physically. I watched him, with help from the therapist, go from laying flat on the bed, to a sitting position, swinging his legs over the side of the bed to sitting on the side of the bed. This is a huge step. He is very close to being able to do it on his own.

Once he has this manuever down-pat, he will be able to get in and out of bed at-will, without the hoyer lift. Hopefully, he will be going to the bathroom on his own, scooting off to the dining room for meals, getting some exercise going up and down the halls in his wheelchair.

On another note: I did see the thread in Forum Community discussing the funding of Robert's van. After some initial embarrassment wondering if you all thought I was soliciting more donations, I have given this some thought. I do appreciate the thought, however I wonder how feasable it is to expect more than what has already been raised, which is a considerable sum! You guys are wonderful. If you want to contribute more I won't turn it away. The Skeptics Unite account is still open. Chillzero is still selling SSB merchandise. But please understand that I never expected what we now have, and if no more is raised I'll still be forever grateful to the people who have so generously donated. You have made it possible for us to afford a van conversion, which we probably would not have been able to get on our own, and certainly it would not have been covered by insurance. This is an incredible community of loving, caring people.

God bless you all, as He has blessed us!
Love, Susan

RSL's better half

18th December 2008, 10:41 PM

There has been much email discussion between Robert's family and I over how to get together for Christmas. I was hoping to be able to convince his mom, his brother and wife, and sister and husband, to celebrate at Robert's nursing home. The facility has a "family dining room" I was hoping to reserve. This plan did not go over well.

I need to realize that Robert is not the center of everyone else's world, just because he is of mine. Other people actually have lives beyond visiting Robert, even though I may not. I had such terrible guilt about spending half of Thanksgiving away from him. When I told him that his siblings and mom are planning to visit him on Christmas Day, he remarked that he had assumed he'd be spending it alone. Well, he will not. His mom and siblings will visit, and I will be there all day. I have arranged for an Albertson's (supermarket) ready-to-heat up meal and will heat it in the microwave in the employee lounge at the nursing home just for the two of us - with enough to share if the need arises.

Robert and I have been able to depend on each other since we first met. No reason for that to change now. I just needed to be reminded what's most important to me.

When I left work today, I quickly discovered upon entering the interstate I take to get to him that a big rig had overturned and was blocking all lanes! It had just happened. Everyone was averted off onto another freeway, which I took north to another freeway, then east and then south to get back to the interstate. Traffic moved well for a while, and about 5 miles before I was due to get off the interstate there was another accident, which made my usual 1 hour drive a total of a 2 hour drive today!

I don't do well in traffic. Frustration. Why does he have to be 50 miles away from me? Why can't his recovery be sped up a bit? When will I feel relief from all this responsibility? I cussed (yes, well, I was a sailor once), and I screamed at God, begging for miracles, asking questions and getting immediate answers in my own head, because I knew the answers. It doesn't make it easier to handle all that I have to handle. But Robert's niece's boyfriend has been diagnosed with cancer and has more to deal with than I do, and so does Robert. I swallow the guilt and keep going.

Good night.

RSL's better half

27th December 2008, 09:40 AM

Good morning, JREF Forum.

It's been a while since I last posted, so I thought I should post something. There isn't a whole lot to tell you. Robert's recovery is going ever so slowly. No miraculous breakthroughs, no "ah-ha" moments.

We had a very nice Christmas. Robert's brother & SIL, sister, mom and his son joined us at the nursing home to exchange gifts and visit. I had driven Mom and Son out there, but they went back in other cars and I stayed with Robert. Robert was so happy to see his boy. I brought enough food for lunch and dinner for the two of us, and it was all food Robert likes! Still, he only ate about 1/2 of what I brought him for the two meals. His stomach has shrunk considerably.

We spent the day watching a rerun marathon of the show House. We had some really dear, tender moments together as well, which made me very glad I spent the day with him rather than following the rest of the family over to his sister's. Oh how I do love the man.

Robert's sister bought me a gift from Robert. He smiled broadly when I took the blouse - my favorite color (royal blue) - out of the box. I gave him a few small gifts, one being a dvd of the first season of Saturday Night Live. His son gave him the complete series of Soap - anybody remember that one? Billy Crystal's big break! We'll have fun watching the dvds on the portable dvd player we got from a JREFer a month or so ago.

We got an early Christmas gift when Robert's eldest child, Rosamund, paid us a visit last weekend. What a wonderful woman she has become. I am a firm believer that a lot of the credit goes to her relationship with the man she is with. She is also living away from home, which helps tremendously. But, she calls me every week or so to check on how her dad is doing, and has come down from Oregon to visit him three times since the stroke. While she's here, she's a tremendous help to me - if for no other reason than being a good listener.

The middle child, the younger daughter, has not seen her dad in about 4 months. I'm having a difficult time forgiving her. My Sunday School teacher says that, as Christians, we must forgive - but that doesn't mean we're a doormat! By not showing up to see her dad at Christmas, after all this time, she has wiped away any chance of my being her doormat. I had purchased the same present for her that I had for her sister, but now I'll use the slipper socks and gift card myself. Man, she could've had so much just by being nice to me and showing love to her dad. I do a lot for her siblings, willingly and happily. While I know I HAVE to forgive her, I will no longer even try to give of myself to her. I will continue to store her "things" in my home until we move, then I will have nothing more to do with her. I hope I find a way to forgive her, more for my sake than for hers. She makes me very sad.

And, on that note, I'll close this post and get out to see my hubby! Thanks again, Everybody, for the support you show Robert and me. And thank you, James Randi, for giving me this outlet.

Love to all, Susan

RSL's better half

31st December 2008, 04:29 PM

Robert's occupational therapist came in yesterday while I was visiting Robert. He's been pretty much concentrating on strengthening Robert's good arm, and sometimes working the fingers on the left hand. After seeing how close Robert was a couple weeks ago to getting himself to sitting on the edge of the bed, I have been expecting to see the OT work on things like showing him how to dress himself, and I told him so. He told me that until Robert can sit and balance on the edge of the bed or roll from side to side in the bed, there was no point in trying to teach him to get dressed.

I got a little snippy with him, I'm afraid. I told him that Robert has been sitting and balancing just fine on the edge of the bed since he was still in the hospital, but he needed help getting to the edge of the bed. And I told him that Robert rolls from side to side to help his nurses all the time.

At any rate, he decided that since I would be there today he would give the PT a call and see if we could all be there at the same time and see just exactly what Robert can do. I showed up this morning hoping for one of those miracles I keep asking God for, but not really expecting much.

Nils (PT) and Hosea (OT) came into the room. Robert had been put back in bed after his morning shower. Hosea had requested he not be in the chair. Nils spoke with Robert a little bit as Hosea moved things out of the way so they could work. The next thing I knew, Nils told Robert to "get up." It took a little doing, but Robert pushed and squirmed his way to a sitting position on the edge of the bed, and Nils only helped when it came to getting the legs over the side and barking orders like "head up!" and "lean a little more this way."

Once Hosea could see that Robert was balanced fine, he started teaching him to pull off his shirt - which Robert could already do to some extent. I guess he's been helping the nurses change him. Then he showed Robert how to put the shirt on, and they practiced taking it off and putting it on a few times. Then Nils took over again and had Robert lay down again, lifting his legs for him, and then sit back up, lay down, etc., a few times.

This might not seem like a lot to most people. Let me tell you, it was more than I expected. The whole time both therapists were showing me how to do things to help Robert, and pointing out how he compensates for having little to no mobility on his left side. Then they lifted him with the Hoyer Lift into his wheelchair and had him wheel out to the hall and perform a few manuevers.

It's obvious that Nils has given up trying to get that left leg to do anything. So, Robert can learn to compensate. And it appears he's learning well. Now that Hosea knows what his capabilities are, he will continue teaching Robert how to compensate with daily routine things like dressing. He said working with pants will have to be done in bed, rolling from side to side, but he definitely can be taught. I'm hoping that learning to use a bedside commode is not far off.

RSL's better half

3rd January 2009, 08:19 PM

I was hoping to have some fantastic news for you all tonight. I'll have to give you what I've got, and you'll have to wait right along with me.

Yesterday when I got home from work there was someone leaving a message on my answering machine. I heard the name of the facility Robert is in, so I picked up. A very nice young man proceeded to tell me that our HMO sent the facility a letter saying they would cease paying the facility for Robert's care on "the fourth." I asked "The fourth of February?" No, he said, the 4th of January. I pointed out that the day we were speaking was the 2nd of January. He said that yes, they meant this Sunday. I immediately panicked. He calmed me by saying there is no possible way the HMO could think Robert was ready to come home. Looking at Robert's chart, they must mean that he will be transferred to the rehab center that had sent him to this place. He noted that Robert was in this facility on a temporary basis, which was supposed to be 30 days, which has now become almost 60, and was to be returned to the rehab center.

So then I became ecstatic! Yay! He's going to the rehab center finally! It must have been the fact that he is now sitting up on his own that triggered all this. I called Robert, and he told me another pt had seen him and evaluated him yesterday morning. I assumed it must have been someone from the rehab center.

The man on the phone told me to speak to the case worker when I came to see Robert today (Saturday). So I sought her out, and spoke with her on the phone. She knew nothing about any of this! And she could not speak to the therapy department until Monday. So everything is still up in the air!!!

I went in to see Robert, and he told me about a pretty blond woman who came to see him this morning before I arrived and had him stand up! He said he failed miserably. I asked what she looked like. Though he couldn't give me much detail, I described the woman who had come to the hospital from the rehab center to evaluate him there and he thought this woman matched that description. The nurse told me the blond woman had looked at Robert's chart. Who the guy was yesterday, I do not know, but this woman had to be the woman from the rehab center.

I am not happy at all with the HMO case worker (not the same as the facility's case worker who I spoke with on the phone). This HMO case worker (named Ollie, for Heaven's sake) transferred Robert 50 miles from home without consulting me or Robert, and is now doing something else without consulting patient or family! She must think herself some sort of God!

So, now we wait till Monday, when the facility case worker (Teresa) will consult with her therapy director and then ream "Ollie" for the short notice and ask her what the hell is going on! However, it appears that the HMO is tired of waiting on Robert and wants to send him back to the rehab center and get his rehabilitation over with. I'm no expert, but it seems to me that, after what I saw from Robert this week, he's ready for the intense physical therapy of the rehab center. It needs to start now. It's been 5 months (as of tomorrow, Sunday, the 4th) since his stroke. It's time to get serious. The nursing facility has been a good transitional place. Now it's time to get to work. And I think he will be transferred back to rehab on Monday. . . . but don't quote me!

RSL's better half

4th January 2009, 08:12 PM

Well, I recall something someone told me when I was fairly young: "When we assume, we make an ass out of u and me."

I have now learned that there was no transfer order with the denial of funding letter (or whatever it is called). The HMO has essentially said, "That's it. He's not improving to our satisfaction, therefore we withdraw all funding." This probably was not meant to be shared with me, but rather as a communication of-sorts between the HMO and the nursing facility. The green admitting person never should have said anything to me about the rehab center, as he should have noticed there was no transfer order.

I spoke with the therapy director today, and he does not understand (so he says) why the HMO has done this. He says every report he has submitted to the HMO each week shows improvement. My BIL, who is an insurance attorney, believes the nursning facility (namely, the therapy director) dropped the ball and failed to obtain written authorization for another 30 days. He also believes that if the HMO still refuses funding after the director speaks with them tomorrow (Monday), that the HMO is opening themselves up for a huge lawsuit.

So, as it stands right now, Robert is NOT going to my preferred rehab center. He is also not being "kicked out" of the nursing facility, and they are not going to try to charge ME for the lapse in funding (which feeds my BIL's suspicion that they dropped the ball).

My BIL has advised me to sit back, with my mouth SHUT, and let the negotiating between HMO and nursing facility take place. If they work things out, maybe all I'll have to do is talk to my employer's insurance rep, whom I already have a cordial relationship with, and ask her to make sure the HMO opens a better line of communication with patient and family so we are prepared for something like this. In effect, a slap on the wrist of the woman at the HMO who made the decision to move my husband 50 miles away from home without consulting him or me, and then denied funding and put me through this emotional rollercoaster over a weekend, when she could not be reached. If things are not worked out by mid-morning, I will go to the HMO office and make certain "things" are worked out to my satisfaction before I leave that office.

See, Robert's insurance company and case worker got to know me better than they perhaps wanted to when I had to fight to get the proper care for my husband during the 3 months of hospital stay. He has been on my insurance, though, since Oct, because his insurance did not have a contract with the rehab of choice and mine did. So far, I've let my HMO make the decisions since early Nov. But I will do whatever is necessary to ensure my husband is provided the best care, so they'd best not p--s me off!

I'll post again tomorrow evening.

RSL's better half

5th January 2009, 09:38 PM

"Curiouser and curiouser . . ."

OK. So the rehab director called the HMO woman today. He had found out that the HMO woman had called on Friday and spoke to a physical therapy assistant in the office who looked at the notes in Robert's file, misread them, and told the HMO woman that it looked like there had not been much progress. The HMO woman knew who she was talking to, knew the "child" (28 years old) had not worked with Robert, but immediately hung up and had her assistant type-up and fax the denial of coverage letter the facility received at about 4:30 pm on Friday. Her response today was that she spoke to the rehab department and was told there was no progress so denied coverage - we are certainly welcome to appeal!

Our meeting with the director and the site social worker took place just before Robert's lunch at about one in the afternoon today. It was explained to us that Robert would not be put out on the street, and we would work together at getting the problem solved. The social worker gave me a copy of the denial letter and circled the phone number I was to call to start the appeals process.

I called the number and started on a series of Medicare-related automated questions. I hung up. Robert is not on Medicare. I went back to the social worker and told her the number was a Medicare number, and she said that it was indeed the number I was supposed to call. I called again, went through the automated questions, then spoke to someone. They said, "He's not on Medicare?" I said no, but that this was the number I'd been given to call to appeal the decision to stop funding my husband's care. She took my info and said a case worker would call me back within 24 hours.

After Robert ate his lunch I went to a local restaurant to have mine and to call my BIL. The more I talked with my BIL, the more I realized the problem is not with the HMO, but with the nursing facility itself. Why should I call the HMO woman? Both the director and the social worker had recommended it. I am not a physical therapist, so what could I say to her to change her mind. Besides, I was so angry with her, I would not have gotten far before blowing my top at her. The facility needed to call her back, I had decided, since she based her decision on false information. If they could not get anywhere with her, they should talk to her supervisor, right?

On my way back to the facility, I started screaming. I screamed and screamed as I drove. It actually did release a bit of steam.

Back in my husband's room I received the call back regarding the appeal. "You say your husband is not on Medicare? Well, I'm sorry, but we can't help you." I got a call back from the insurance rep to my employer which basically said there was nothing they could do until there was neglect on the part of the HMO and Robert is physically damaged. She suggested I file an appeal with the HMO. I told her I had tried that and gotten nowhere. She suggested I call the HMO.

By now, I was really confused and disheartened because it seemed like no one was going to help me. I called customer service for my insurance plan. The woman on the other end genuinely wanted to help me. She asked for the reference number. I looked again at the denial letter I had been given a copy of. The only number that appeared was Robert's member id #. The lady asked me to read some of the letter to her. I started with the name and address of the HMO, then read these words, "Notice of Medicare Non-Coverage." I said, "Wait a minute. That isn't right." She asked, "Is your husband covered under Medicare?" I said "No!" She told me she'd like to help me but could do nothing without the reference number. By now it was 4:30 and the HMO was closed. The insurance lady tried to reach someone ther but could not.

I have a right to an immediate appeal. I could not appeal the decision because the HMO sent the wrong friggin' form with the wrong friggin' apeals phone number!!!!! I shared my findings with the director and social worker. The social worker tried very hard to get some help from the insurance company. After 7 calls to 7 different phone numbers, she eventually ended up talking to the same woman I spoke with, who told her to call the HMO back tomorrow and get them to send the correct form with the correct appeals number on it and then immediately appeal the decision. In the meantime, though she was not an attorney, the insurance lady believed that the HMO should be held responsible for the lapse in coverage.

So, the matter is still unresolved. Robert's blood pressure is up (and I imagine mine is as well), I have not slept - really slept - since Friday night when I was on cloud 9 because I thought Robert was going to the rehab center, and several different people have put a lot of effort into the resolution of this case. BTW: I also found out that another woman in the social worker's office had actually spoken to someone at the HMO's office, who could not find anything in their system regarding a denial of coverage on Robert!!!!

One of the things the social worker did this morning was call the rehab center I want Robert to go to and request an evaluation. The director said today that, in view of the most recent breathrough with Robert (sitting up on his own and the ability to operate a wheelchair), he felt Robert is ready, at long last, to be returned to the rehab center. We have yet to hear back from the rehab center, but I am hopeful they can evaluate him this week, will approve and accept him, and we can get back there this week. In the meantime, we will work on the appeal together, the social worker and me.

I will also file a complaint with the insurance company about the way this was all handled. If I can't get a weighty slap on the wrist of the HMO woman who did this and get the matter resolved with the HMO, I may seek the services of an attorney, recommended by my BIL, who happens to be the same attorney who got my coworker a large settlement in a wrongful death suit of her husband. I'd rather not go that route. I'm hoping for an overturn of the woman's decision so it does not have to come to that.

Now that I have informed you all of what transpired today, I am going to take some Tylenol PM and go to bed!

RSL's better half

6th January 2009, 10:13 PM

So, things are a bit more under control now.

I just explained a few things to the guy who married us in an email, and it put things in better perspective for me! It's so neat how God always makes things better for me. He really has a sense of humor, too, using "Jesus" to help ME better understand. (For those who do not know, our friend, Neil Saavedra, who married us, has a radio show, called The Jesus Christ Show, on which he portrays Jesus, and answers "theological and life situation" questions from a call-in audience in a way he believes Jesus would answer, using scripture as well as common sense and Christian doctrine.)

I told Neil that my rehab-of-choice is coming out tomorrow to reevaluate Robert. Then, I listed some of Robert's major accomplishments of the last two months.

1. He is brushing his teeth and washing his face every day before breakfast.
2. He is put into his wheelchair before breakfast and not allowed to go back to bed until after lunch (at least when Anastasia is on duty as head nurse, 5 days a week).
3. He can roll from side to side in bed to help his nurses change him or whatever.
4. He is eating more meals in the dining room and is taken to the activities room more now, showing his social skills. (I watched yesterday while he sang to an old lady who could not speak after breakfast. It was heart-warming! She smiled sweetly at him as he "performed" for her. Very sweet.)
5. He is using his cell phone and the tv remote now.
6. He is finally being taught to dress himself!
7. He can sit up in bed by himself, though he still needs help swinging the bad leg over the side so he can sit on the edge of the bed - but he's getting better at that all the time.
8. They have to lift him into the wheelchair, but he can operate the chair using his good arm to propel the chair and his good leg to steer it. He can go up and down the halls fairly easily.

It's actually quite amazing all he can do, given his limitations. When I spoke to the rehab evaluator today (the same one who evaluated him in the hospital), I gave her number 8 and 9 and was ready to give her more, but she interrupted me and said they'd be out tomorrow. She told me she remembered Robert, but remembered me more (ehhll). I guess I was pretty pushy back then.

The insurance company's appeals person told the HMO people today that the notice they sent is null and void because she sent the wrong form (a Medicare form, with a Medicare appeals phone number - Robert isn't on Medicare - we have a private carrier), which denied us our right to an immediate appeal. The insurance company expects the HMO to pick up the tab for this week. This person told our social worker to expect another letter, on the proper form, giving us another end-date of coverage, before the week is out. At least we bought ourselves a few more days by filing an "expedited appeal." The insurance company has something like 72 hours to choose a side. The social worker faxed this person 135 pages from Robert's chart today. This person will also receive a copy of the recommendation I'm hoping to get from the rehab evaluator that Robert be returned to the rehab. The whole point of the HMO sending him to the nursing facility in the first place was to get him strong enough to withstand the therapy he will receive from the rehab. The intention has always been to send him back. So, if the rehab says he has improved enough to come back, the HMO cannot now deny coverage.

Everything hinges on the rehab's evaluation tomorrow. I'll keep you posted.

RSL's better half

7th January 2009, 09:15 PM

Well, Robert was not evaluated by the rehab today. They had contacted the HMO to make sure that, if he was accepted, the HMO would cover him. The HMO woman I've told you about said their evaluation would not be authorized, nor would the HMO cover his stay at the rehab because HMO woman (or, should I say woman-who-thinks-she's-God?) has decided that he is not ready for the rehab's aggressive form of therapy. So, let's get this straight: The head of the rehab dept at the nursing facility and all of his therapists believe he is ready and needs this type of therapy NOW. Miss "Ollie" HMO is much more knowledgable than the therapists that have been working with Robert for the last two months, and the fact that she has never even seen Robert qualifies her to decide just how far he can go with his recovery.

You know, it is possible that Robert may only get a little bit further. But he should be given every opportunity available to get as far as he can. This is just plain wrong that someone with no medical or therapy degree has this much power.

I spoke with his primary doctor today. Hopefully he will start taking a more active role in Robert's care. In the meantime, no matter how I feel about Ollie HMO I will have to call her tomorrow for a little chat. I have to try to get her on the same page as me and all of Robert's therapists and nurses and social worker.

I am frustrated. I am extremely stressed. I am angry. I refuse to check my blood pressure because I can't handle one more thing to worry about, even though I'm certain it's elevated. I'll pop an extra pill tonight - my doctor told me I can and should from time to time, don't worry! Of course, my "elevated" bp is about where Robert's "usual" bp is. Generally speaking, it has not been a good week.

And the saga continues . . .

RSL's better half

8th January 2009, 06:13 PM

Well, I spoke with Miss Ollie's supervisor today. I requested a meeting between the three of us. I told him that I didn't understand the decisions she had made lately with my husband's healthcare and I need clarification, as well as a clear picture of what she intends for his care. He tried to beg off, but I told him I may need him to hold me back. Actually, I said I may get a bit upset with her, so it might be a good idea if he was there. He said he'd call me back as soon as he knew her schedule and could set something up. I asked that he call me back today. It is now 5pm and he has not yet called me back.

All these shannanigans are taking a toll on Robert. He's been very "confused" the last few days. He called me at least a half dozen times this morning in a 2-hour period. I finally left work. It's an awful choice I have to make. I need the job, now that Robert is no longer working, but when he asks me to come I have to go. If I don't I feel very guilty. I tried to explain all this to him, but I'm not sure he gets it. All he knows is that he needs me there, and I'm a terrible person if I don't fly out there right away.

The stress I'm under at the moment is incredible. I've never felt this much. I don't want everybody feeling sorry for me, though. I'm just venting! It's like the old saying, "When it rains it pours!" Now my mother-in-law is having more health problems and I'm worried about her as well. I can't tell Robert, because he would have problems with that worry as well.

And meanwhile, the clock is ticking on Robert's shot with the rehab center.

Tick . . . Tick . . . Tick . . .

RSL's better half

10th January 2009, 09:09 PM

We have a meeting scheduled on Tuesday at 1, in Robert's room, with Ollie, her boss, the director of therapy at the nursing facility, Robert and me. Robert insists on being part of this. As strange as his mind gets sometimes from this stroke, he is still a skilled conversationalist and can think of the right questions to ask.

I'll let you know when there is something to report.

RSL's better half

12th January 2009, 09:00 PM

Ok, Folks, here we go again! If you are inclined to pray, please do so. If you are not, please just pause to think about us at 1pm Pacific Time tomorrow (Tues). Robert's best buddy, as a favor to me, says he will be with us. After John and I exchanged voicemails about it, Robert's brother, aka JPL here on the board, called and asked if he could be there, to which I said "Sure!" I'm giving John an "out," if he wants or needs it, but hoping he'll still be there.

I have never had a lack of support. I could never have gotten this far with sanity still intact if not for family and friends! And I know they, and all of you, will still be there for the rough road ahead. I am truly blessed.

RSL's better half

13th January 2009, 06:07 PM

The meeting went very well! The rehab has again been called for an evaluation. Robert's PT and his boss were there, Ollie and her boss were there, our social worker was there taking notes, and Robert's buddy, John, and brother, Jim, were there as well. Ollie and I were visibly trying not to say much. We barely looked at each other. But, when Jim asked how we can keep from being blind-sided again, I spoke up and asked for more communication, to let me know when they make a decision and give me some time to find a remedy.

I also let Ollie know that the woman who was supposed to evaluate Robert last week told me on the phone that Ollie said Robert was not ready for the rehab. She denied saying that. She even denied speaking to the woman. I'm somewhat "skeptical" of her denial.

Robert was "on!" He was articulate, to the point, somewhat emotional at one point, and even cracked a few jokes. The emotion came when we were discussing the care he has received at this nursing facility. He wanted everyone at the table to know he deeply appreciated the kindness, professionalism, and patience of both the therapists and other staff. He expressed his deepest gratitude to his PT.

BTW: A few days ago, the PT had told me he had felt some response in Robert's left leg and was going to continue to work on it. In the meeting he announced that Robert's leg is definitely coming back! Every day, the PT feels more and more. He had felt something earlier on, but it wasn't anything you could depend on. Suddenly, it's happening every time he works with it. Still pretty weak, but something to work with. He was very excited about it. He told Ollie and her boss that if on the slim chance the rehab doesn't want to take Robert, that he (the PT) be allowed to continue to work with that leg.

I think everyone left the meeting with a sense of hope, an agreement that he now needs more intensive therapy, and a better understanding that we all have Robert's best interest at heart (except maybe, Ollie). I still don't think she gives a rat's ---. But her boss made it very clear that Robert would be given every opportunity to improve to his full potential. He stayed after the meeting and had a tour of the facility. She begged off. It was her first visit, and all she saw was the lobby and the chapel, where the meeting took place. I don't have much respect for the woman. I don't suppose you could sense that?

Score two for the Lancasters - the continuance of care where he's at and the rehab's eval. I like to think we put her in her place a bit. Not very Christian of me, but hey - I am human therefore I sin. I'll ask God for forgiveness, but I won't ask for hers. She'll have no further problems with me as long as I know Robert is getting the care he deserves and needs.

RSL's better half

14th January 2009, 08:19 PM

The rehab center evaluated him today. She is a very nice, compassionate person. Her personal opinion, after having talked to Robert's PT, is that he may benefit from a couple more weeks at the nursing facility with the PT concentrating on getting him to "something"-and-pivot (I can't remember what the first word was - was it "stand and pivot?"). She would like to see Robert get out of bed and into his wheelchair on his own. Neils, the PT, thinks that might take 2 weeks, if he can get the HMO to cover more therapy time per day.

The evaluator wants Robert to get the most benefit from his time at the rehab, and a "typical" stay for a stroke patient is 21 days. The more he can do going in, the better, as far as she's concerned. However, she left a message for the doctor he had when he was there before, and faxed him the therapy notes from Robert's chart. He will make the decision whether Robert will stay at the nursing home for a couple more weeks or if they take him now. She acknowledged the urgency of a higher-level of therapy for Robert. She really does not want to make this call.

The evaluator and I discussed what I expect from Robert for him to be able to come home. My main concern is his ability to use at least a bedside comode. I am just not the kind of person who can clean his butt, I'm sorry. Nor is my son, who will help him in other ways to transition when he comes home. I also told her we would be moving to a more "wheelchair-friendly" place mid-Feb, so she will take that into consideration as well.

So, if the doctor shares her opinion, Robert will stay where he is through Jan, then move to the rehab around the first of Feb. According to her plan, Robert would come home before the end of Feb. If the doctor decides to take him now, he may have to stay at the rehab until we have moved into the new place. I'm kinda thinkin' her plan is the better plan. As long as I know he's going to get there, I'm Ok with a couple more weeks of being 50 miles away from my groom.

Hanky Warning:

There was another over-turned truck on a local freeway today, and it took me 2 hours to get to the nursing facility. I got there just minutes after the evaluator did, though. But I didn't know that when I was trying to get there. I thought I was missing it. After the evaluator and PT left us, I told Robert I cried harder and longer on the ride there than I had in years. He lifted his arm to embrace me. I bent over him and he hugged me for some time. God! How I miss that! We talked about how frustrated he is that he can't "be the man" and comfort me when I need it right now, and how I feel like the spoiled child because I've gotten used to being able to hide myself in his embrace and forget about the rest of the world. (And you people keep calling me "strong.")

RSL's better half

15th January 2009, 09:01 PM

Got the call from the rehab center today. They want to wait another 2 weeks and give Neils (the PT) more time to get Robert to the "stand and pivot" phase. I asked if I will need to request another eval in 2 weeks, and Christie told me no, she would just come back out in two weeks.

Today I watched Neils bring in a machine to help Robert stand. It's quite remarkable. Robert had to straightened his knees to rise to a standing position while the machine held most of his weight. I stood behind him and watched the difference in his posture as he straightened his knees - it forced his back to straighten as well. And Neils and I kept reminding him to lift his head up, which forced his shoulders to straighten up. Neils was quite pleased with Robert's effort. So pleased, he lowered the machine's lift of Robert, so that Robert had more weight to bear! He got quite a workout today!

FYI: In case you're interested, Robert has lost 70 - 80 pounds since August. We aren't exactly sure how much he weighed when he went into the hospital, but I have a rough idea. He now gets weighed once a week. Suffice to say that he is under 300 pounds now. This can only aid in his recovery.

RSL's better half

19th January 2009, 10:55 PM

More good news to report.

When I walked into Robert's room today, his new OT, Shelly, and his speech therapist, Jenifer, were talking excitedly with each other. Shelly saw me and said, "Aw! You missed it!" Shelly had handed Robert a board while he was in bed, explained how to use it to slide from a sitting position on the bed into the chair. Robert then took the board himself and slid on it from the bed into his wheelchair! Jenifer had just finished her session with Robert but hung around to watch. They were both extremely excited.

Shelly then left, and still Jenifer hung back to tell me about her session with Robert. She had brought along her laptop, and Robert spent about an hour showing her the forum and his SSB website. When I have brought Robert's laptop in for a few weeks, he easily bored of it, so I have only brought it in a few times since. Suddenly, he has a renewed interest. Jenifer wants his mind engaged as much as possible, so I now have orders to bring the laptop on every visit and to play games with him - games we've always enjoyed.

Later, Neils, the PT, came in. Robert gave him crap because Shelly had told him that Neils said he wasn't ready for the slide-board, and here Robert had used it succesfully. Neils smiled patiently. "Did you use it to get back into bed?" "No," said Robert. "Well, had you been able to use it to get back into bed - UPHILL as opposed to downhill using gravity and sliding to the chair - I'd have given Shelly and you much cudos and bowed to you both. I knew your leg is not yet strong enough to get you back into the bed, which is why I have not used the slider-board with you."

Neils then went to work getting Robert into the "standing machine." I took some pretty lousy cellphone pictures to share, so I hope I'm doing this correctly:

http://forums.randi.org/imagehosting/thum_172944975595ecadb4.jpg (http://forums.randi.org/vbimghost.php?do=displayimg&imgid=14938)

http://forums.randi.org/imagehosting/thum_17294497559b9954b4.jpg (http://forums.randi.org/vbimghost.php?do=displayimg&imgid=14939)

http://forums.randi.org/imagehosting/thum_17294497559d77d939.jpg (http://forums.randi.org/vbimghost.php?do=displayimg&imgid=14940)

It was quite painful for Robert, but he did very well. When Neils worked with him laying on the bed, he felt Robert pushing with his left leg. Still not much when lifting, but he's been working the muscles that push his leg down when he stands in the "standing machine." He's in a sort-of hammock that is tied to the machine and supports him as the machine brings him to a standing position, but his knees are bent so he's been learning to straighten his knees after the machine gets him as far as it goes. That's where the pain comes in, because Neils has been helping him straighten that left knee.

Neils was quite happy and excited about today's session, as well. All of a sudden, Robert is not only showing more determination, but actual muscle movement in that leg. He has finally come into the phase where the fruits of a therapist's labors are materializing.

Shelly has gotten Robert to work with the painful left hand. It's still pretty limp, but his fingers are straighter than they have been in some time. Everybody seems to be giving Robert homework to do! The best part is, he's actually trying to do the homework!

Beeg Seestor, Mom and I were there on Saturday and Sunday. Robert sat in his chair about 6 hours on Saturday, and for about 3 hours he was holding court and making us all laugh. Beeg Seestor and Mom got to watch his speech therapy on Saturday, and boy was he giving poor Jenifer a hard time! She adores his sense of humor, though, so took it all good-naturedly. Beeg Seestor had discovered what one of Robert's favorite foods is (fettucini alfredo with chicken and broccoli) in passing conversation on Saturday, and so we brought him some on Sunday. She also bought him a poster of kittens (Robert loves cats). He didn't stay in his chair as long on Sunday and was pretty tired by the afternoon. I'm betting that, after his workout today, he went to sleep pretty easily after I left.

Can you also tell by the photos that he's lost between 80 and 90 pounds since you all saw him last?

More news is that moving day (from the 4-bedroom house we've been renting to a 2-bedroom condo) is Saturday, Feb 7. This Saturday I have a company called "Got Junk?" coming to cart away accumulated "stuff" neither of us needs or even looks at any more, as well as some furniture we will no longer have room for. I plan to load their entire truck. I've found a reasonable moving company, too. And, I have a cleaning service coming in the following Saturday, giving my son and I enough time to make sure everything is out before they clean floor to ceiling of the house. I want to make as little work as possible for our wonderful landlady, who hates to see us leave as much as we hate to leave. So, all I should have to really do is pack and unpack - which is plenty of work for me!

Good night JREF skeptics. God bless.

RSL's better half

24th January 2009, 10:55 AM

Well, right now I have 1-800-GOT-JUNK (franchises in FL and the Chicago area I'm told, besides So Cal - including San Diego) hauling away half a lifetime of accumulated junk and furniture we will no longer have room for. I'm likely going to pay a lot to have it taken away, but then it will be gone and my "load" will be that much lighter. Before you ask "Why is she paying someone to remove the stuff? Couldn't she call Goodwill or something?" let me tell you this: IT'S A LOT OF JUNK! Goodwill, Salvation Army, Disabled American Veterans all would have picked through the stuff; I would have had to be here between this hour and that hour, wasting my entire day, when I could've been with Robert; and this company takes the "donatable" stuff to a staging area where they will donate it to charities.

They have the cutest LITTLE truck! I was hoping it'd be bigger. But it looks like a miniature trash truck. There are two guys, and so far they've been pretty impressive. We've got some really heavy furniture and they're handling it expertly. Brian told me there is more than 2 truck loads, but I told him to keep it down to 2, taking the bigger, bulkier stuff first, and I'll deal with whatever is left. Hopefully that'll be just some boxes of junk we can toss in the back of a pick-up and take down to the local Goodwill.

Next on the agenda is donating Robert's old, not-working minivan to charity. Haven't decided which one yet - but I can say it will NOT be Cars for Causes, as Robert's sister, Trish, the Deputy Attny General, has been involved in litigation against them.

Next Saturday I will do a walk-thru of the new place with the owner. I'm excited about that because, after I pay the rent and deposit, I'LL HAVE THE KEYS! My son and I can start moving small stuff over - probably all of his bedroom and some other things (he has a pick-up). That night is my "Chicks' Night Out" with friends from work, which will be a wonderful diversion.

Moving Day will be the Saturday after that! I've hired a mover. I can't wait to get everything settled in the new place! Then we'll have a week to make sure we got everything before the cleaning service cleans the old place and I hand the keys to our wonderful ex-landlady. I'll probably cry. But then it'll be a matter of waiting for Robert to come home, and then begin our lives together! One kid (mine) will be with us for a short time, mainly to help Robert transition from rehab to home. Eventually, though, we will be on our own for the first time! Just Robert and me! I am sooooo looking forward to that!

If anybody's wondering . . . none of this is being paid for from your donations. I'm still waiting to see if we need a wheelchair van, so that money is still in the account. I know, I know. Some will say that I don't have to explain - others, though, may be wondering.

RSL's better half

26th January 2009, 09:09 PM

Today I learned that last Friday (1/23) Robert not only sat right up with no help but he also used a slide board to get out of bed AND BACK IN - all on his own! His speech therapist was a witness, and she told me all about it. This is wonderful news! Whatever Shelly, the occupational therapist, is doing it's working by leaps and bounds!

Jenifer (speech therapist) said she could only describe it as a "small miracle." Exactly what I have been asking God for. Of course, Robert would insist it's just coincidence. Whether it was God's doing or not, Robert has definitely taken a turn for the better. As Jenifer pointed out to me and I have noticed, he is more willing to do things now than he has been since the stroke. Instead of "Ow-ow-ow! Stop-stop-stop! That hurts!" it is now, "Well, I know it's going to hurt but I'll do my best."

Today we went on a field trip to a psychiatrist's office for a psych evaluation. Robert wanted answers to why he is still confabulating and becoming confused. Basically, the guy said what amounted to "Because you've had a stroke in the right hemisphere." He did diagnose Robert as having depression and prescribed a couple medications which should help diminish the confabulations. Apparently they are fairly common. He also ordered an EEG and some blood tests, just to rule out any other possibilities. He tested Robert's mind pretty much in the same way Jenifer does, too. He had Robert calculate from 100 subtracting by 7 - Robert got all the way to 16 before the psychiatrist stopped him. The guy gave him three things to remember, and 5 minutes later asked him for the three things and Robert rattled them off like they were easy. They were really off the wall things and completely unrelated to each other. I would've forgotten them. I DID forget them.

Neils, the PT, came in this afternoon with the standing machine. Since Robert was still in his wheelchair, he decided to stand him up from the chair. He had been lifted into the chair by Hoyer lift, so the hammock-thingie was still under him, and Neils hooked it up to the standing machine and gave Robert a real workout. At one point, Robert said over and over, "Could you let me down now, please?" If I had not been there, I think Neils would have let him down onto the bed and ended the session. Instead, I piped up and told Robert this was his therapy session and it would be over when it was over. I told him to do what Neils had just told him to do and he did it - a few more times. Since Robert has been using the standing machine, both legs have gotten stronger.

Jenifer came in during the PT session. When Neils was done, she began her session. Of course, that was when the treatment nurse decided to come in and put ointment on his butt. Jenifer and I went out to the hall. That's when we talked about the "small miracle." She talked about how unique Robert is, how amazing this recovery is, how unusual it is for someone this far out from a stroke to be showing all the positive signs he has suddenly started showing.

Suffice to say, Robert is surprising everyone, and everyone is very excited. The "rehab of choice" should be out for a visit again this week. It's time. Now is when they need to get their paws on him. I am more and more hopeful that he will walk again. The left hand and arm, I dunno. We'll have to see.

God bless and good night.

RSL's better half

30th January 2009, 07:59 AM

I spoke with "rehab of choice" yesterday. They are not impressed enough with Robert's progress. They will go week to week, checking in on him and getting reports from Neils, the PT. Apparently, Neils agreed to work on particular things with Robert which the rehab wants to see.

The woman from the acute rehab, Christy, also told me that, because of the amount of time Robert has spent in sub-acute rehab, we will be lucky if the insurance gives the acute rehab 2 weeks to work with him and then will release him to home. I don't see how they could do much of anything in 2 weeks. But, what do I know?

It was a real let down. I was so hoping we were closer to the end of his stays away from home. After 3 months of traveling 50 miles each way, an hour there and an hour home, after seeing so much progress in such a short time . . . I really couldn't see them turning him down again. I was sure they'd take him now! But I'm no expert on rehab. And I do want him to be able to care for himself with minimal assistance when he comes home. So, I need to find the positive spin. Right now it's not coming to me.

RSL's better half

6th February 2009, 06:01 PM

Robert had an EEG today. It was interesting to watch, though I don't understand why it was mandatory for me to be there. We were taken to a not-so-local hospital in a van owned by the nurxing facility. Unfortunately, it's the only van they have, and they have only one driver. If he's transporting more than one patient, as he was today, he runs into scheduling problems. We waited 2 1/2 hours after the test was over before we could leave the hospital. Robert enjoyed his "field trip," but was exhausted by the time we got back.

Still no word from the acute rehab. I left a message.

RSL's better half

9th February 2009, 06:14 AM

Well, moved yesterday. I thought I'd gotten rid of all the unnecessary/unneeded things - WRONG! Now I have to go through another phase of getting rid of stuff. I have another truck load for 1-800-GOT-JUNK. They're coming to the old house in the morning. We just don't have room for all this junk - and that's what most of it is. I absolutely refuse to pay for storage - and how do I know if we can afford it in a couple months? Better to deal with all of this now than when he comes home and my hands will be full just taking care of him. When he does come home, I wonder if our marriage is stronger than his need for things or will it fall apart because I "did this to him?" I wish I could be sure my love for him is enough, but I won't know until he's home with me. Logically, he "understands" what I'm doing and why. But his sentimental attachment to his things is very strong. I'm losing things I'm attached to as well, but he doesn't see that right now.

I moved us to a much smaller place. It is definitely more wheelchair-friendly, but it's also a place we can afford on just my salary. I still have no idea how much he'll get from disability. He worked as a contractor for so long, and has only been an employee for a few years, so I am not expecting much.

Every time I think there's just one challenge left for me to face, I'm slammed with another decision and another process to deal with. It doesn't look like it's going to end any time soon. I truly love my husband, but I hate what I'm expected to handle. And I'm so tired all the time. Just sooooo tired.

RSL's better half

11th February 2009, 11:26 PM

Tonight Niels said that Robert is not progressing as quickly as he had hoped. He judged that Robert would need at least a couple more weeks to get to the point where rehab-of-choice wants him to be (stand and pivot with max to mod assist) before they'll take him. This, after I had tearfully watched Robert move his left wrist and fingers! He still has a really difficult time sitting up and he can only stand up when he is supported in the standing machine. Niels moved both of his legs around, getting him to move his right leg and then getting him to try and move his left the same way. I watched the muscles in Robert's left leg ripple as he strained trying to move it. Considering where it was, this appears to be miraculous to me. But it's not enough.

So . . . he needs more time. I don't know that I'll ever be ready to hear that. I want so desparately for this to all be over. But I don't want him to go to acute rehab and fail. So, a couple more weeks, at least, 50 miles away from home. I trust Niels completely. If he says so, it is so. Robert is still not able to put all the "pieces of the puzzle" together, as Niels puts it. He is learning, slowly.

RSL's better half

12th February 2009, 08:33 PM

After about 6 1/2 months, Robert is finally ready for the "rehab of choice." It's about 10 miles from home, as opposed to 50! And it's a place of unlimited resources, so Robert will be afforded every opportunity to advance as far as he can. The HMO has authorized 2 weeks, and will reevaluate Robert's situation at that time. Both facilities will work out the details in the morning and Robert will be transfered tomorrow.

The next couple of weeks will be very intense for Robert. He will be worked harder than he's ever worked before. He will likely not be happy about it, but he is preparing himself for it.

Here we go . . . for real . . . for life.

Much love, Susan

RSL's better half

13th February 2009, 11:05 PM

After tearful farewells at his home for the last three months, Robert is settled in at the "rehab of choice." I don't think I've ever mentioned that one of Robert's nurses there was named Hershey. Robert was always begging her for Hershey Kisses. She gave him bunches today and they both cried.

A couple people told him he was well-loved there, and they'd not forget him. Of course, this made him weep all the more. Everyone said they were "glad" to see him go, though, because he "just didn't belong" there. It's a place for old people and people who will need care the rest of their lives. The hardest goodbye for me was, of course, Niels. We promised them that we'd be back when Robert was better.

Two of the nursing staff at the acute rehab remembered Robert from his 10-day stay more than 3 months ago! They remembered him trying to pull tubes and stuff out and having to be restrained! Tomorrow he should be evaluated by the therapists. He could have some light sessions as well.

I left him in good spirits. Both of us remarked at how much he has gained since his last stay there. He really has improved tremendously. Now we'll see how much more we can demand of his body and mind.

RSL's better half

14th February 2009, 07:30 PM

I thought about how confused you all might be between posts 75 and 76. One day Niels was telling us "another couple weeks," and the next I was telling you Robert was headed for the acute rehab.

What happened was, again, Niels. After our conversation on the 11th, he got to thinking that perhaps he should be telling the acute rehab what Robert CAN do, as opposed to focusing on what he can't. So he faxed the week's reports to the acute rehab and then left a lengthy message for Christy at the acute rehab running down the list of Robert's accomplishments and where he is now. He did all this at about 4:30 or 5 on the 11th. By 6:30 Christy was calling me to tell me Robert would be transported the next day (12th). We saw Niels before he was transported, and he told us what he had done, though Christy had already told me she'd had a message from him. I don't think he realized how swiftly things would go.

Three and a half months ago, the hospital had done all it could for Robert. Everyone associated with the hospital and Robert's insurance co. wanted to send him to acute rehab at the sister hospital (owned by the same company). I wanted him to go to the rehab with the best reputation, so I fought for it and I got it. But after 10 days, my choice told us he wasn't ready. Now under my insurance, the HMO placed him in a sub-acute facility 50 miles from home. I was defeated. This was precisely the type of place I did not want him in! They don't take care of people in those places - not the way he needed, anyway. And it was so far away! I cried, and I prayed. Roz (Robert's daughter) tried to tell me it was going to be all right.

Then I met Niels Nielson. I watched him assess Robert, and then stand him up! And I met Jenifer, the speech therapist. And I suddenly realized that Robert was right where he needed to be and was being helped by the best people he could've gotten. They meshed with his personality, and guided him along at a pace that was comfortable for Robert. Slowly, they brought him to where he needed to be to be accepted by the place I wanted him in.

Now he's in the place where injured policemen, firemen and soldiers go for the very best rehabilitative care. If Robert is going to walk again, this is the place where he'll learn - even if it's as an outpatient. This is where he'll learn to be self-sufficient enough to be left on his own for 9 - 10 hours a day. This is the place where he will get to the point where he'll be for the rest of his life - whatever ability level that is.

Here's the kicker for me: Jenifer used the term "small miracle," which is what I'd been asking God for recently. And, as Niels left us just before Robert was to be transfered, he said "God bless you." He'd never said anything like that to us before. And as Robert was being wheeled out to the transport, one of the patients at the nursing (sub-acute) facility who had never spoken to me or Robert before said "God bless you." I turned and said, "God bless you, too." She winked and said, "Why thank you." My faith . . . my belief . . . takes these all as signs of God's will, and as small messages from Him.

Just a few more weeks now. Then, outpatient status until Robert plateaus. But he's coming home. I can see it now. Not much longer. I praise God and thank Man. I believe both were at work together - and still are.

RSL's better half

15th February 2009, 01:40 PM

Since you seemed to like my crappy cellphone pics, here's more:

http://forums.randi.org/imagehosting/thum_1729449987a9ac4030.jpg (http://forums.randi.org/vbimghost.php?do=displayimg&imgid=15306)
Robert getting the EEG

http://forums.randi.org/imagehosting/thum_1729449987adf209ee.jpg (http://forums.randi.org/vbimghost.php?do=displayimg&imgid=15307)

Our Birthday Boy:
http://forums.randi.org/imagehosting/thum_1729449987b10e7cc2.jpg (http://forums.randi.org/vbimghost.php?do=displayimg&imgid=15308)

http://forums.randi.org/imagehosting/thum_1729449987bd99f280.jpg (http://forums.randi.org/vbimghost.php?do=displayimg&imgid=15309)

Robert and his "bad self" getting ready for transport to new rehab (kittynh made the hat for him - skull and cross bones):
http://forums.randi.org/imagehosting/thum_1729449987c5b66cd1.jpg (http://forums.randi.org/vbimghost.php?do=displayimg&imgid=15310)

RSL's better half

19th February 2009, 10:13 PM

Tonight's visit was a little scary. He was confabulating that he was part of the show "Law and Order." He knew he was confused and tried to describe why, but could not put a sentence together and was having a real problem finding correct words. He had not been confabulating lately, at least not full-on, since he's been on an anti-depressant and a low, low-dose sedative. The new rehab doesn't like the sedative (Haldol) and so started him on something else - can't remember the name. He is also now on a muscle relaxer so they can work his atrophied muscles with less pain.

The RN thought he might just be exhausted as he got a real work-out today. I spoke with dr., and she has immediately taken him off the sedative and muscle relaxer as both could cause these symptoms. She will monitor him throughout the night. She will also submit an order for another ct scan. My fear is that he may have had another stroke. Although the RN said his BP had been pretty good all day.

Robert's eldest, Roz, is in town and also visited him tonight. She became very alarmed when he asked her if she had seen "Nana and Papa" lately. She reminded him that Nana died years ago, and Papa died about 2 years ago. When he started babbling incoherently I convinced him to go to sleep.

I will check on him in the morning. I have no time left to take at work so will likely be docked, but Robert has to come first.

RSL's better half

21st February 2009, 08:44 AM

Yesterday morning Robert's confusion was worse than it had been Thursday night. His pt doctor had a CT scan done. He told me on the phone that he had evaluated it and discussed it with Robert's primary doctor and that they agreed there was nothing new - no new stroke. I was very relieved. He said they had decided to send Robert to a local hospital for a "complete neurological work-up" just to rule out the possibility that it wasn't the medication, but they were pretty sure it was the medication.

Roz and her boyfriend, Jesse, were there when Robert's pulminary specialist came in. This doctor ended up arranging for Robert to go to the hospital. She told us to watch for her because she would follow us over. By then, Robert was becoming more coherent and his sense of humor was back. He was showing his "smart ass" wit, which surprised the doctor. To me, it appeared that since they had stopped giving him the three drugs they had told me about the day before the symptoms were going away. Before we left for the hospital his nurse told me that they had also stopped Robert's Lyrica (sp?). I asked why, because he'd been on that for pain at the nursing facility for some time. The nurse explained that the dose had been increased recently.

We were transported to the hospital's emergency room at about 1 pm. When we finally left the emergency room at 10 pm, a chest xray had been done (which I questioned and was told it was standard procedure) and some blood tests were run. The emergency room doctor had asked me why we were there, and I told him what had happened and that I was told we were there for a "complete neurological workup." He asked what that was. I said I didn't know, and was perplexed that he didn't know! I told him a CT scan was done at the rehab facility. He called Robert's primary, who told him the rehab facility did not have a CT machine, and that she knew nothing about him going to the hospital.

I started making calls. I spoke with the pt doctor's PA. She assured me that the rehab facility does have a ct machine and that her boss had seen the CT scan on Robert. I told her nothing "neurological" was being done to Robert, and she said there was nothing she could do to help me. She suggested I speak to Robert's primary. I got the run-around from the doctor's office because by then she was gone for the day. She did return my call, but reception in the emergency room was so bad the call went to voicemail. I listened to the voicemail and she basically said that when Robert is in the rehab facility she is his primary doctor, but at this hospital the emergency room doctor was his primary and I should discuss my concerns with him.

I started putting pieces together. The pt doctor had not talked to Robert's primary, but to the pulminologist. That doctor made all the "arrangements" for the day - and had told us she would follow us over, but never showed up! By then I knew she was also gone home for the day, so did not bother to call. I realized by about 6 pm Robert was not going to be admitted. The ER doctor told me he would send us back to the rehab. We then waited 4 hours for transport.

What a wasted day! If you think I won't say something about it today you have another think coming.

RSL's better half

21st February 2009, 06:14 PM

Robert's primary came in to see him today. I released a lot of frustration on her, but tried to stay as calm as possible. It turns out she was totally aware of what was going on with Robert before and during the hospital visit. So now I really don't understand what the ER doctor was talking about. She did admit to ignorance about the ability of the rehab to run a ct scan, though. She had a copy of the results faxed to the ER doctor as soon as she was made aware, and he decided no further tests were necessary.

I asked her to let me know what meds he's on exactly and she promised to get that for me. I believe Lyrica will be reduced, and Haldol done away with completely. She wasn't sure that a muscle relaxer was necessary, so that will likely be stopped. Robert was back to his usual self today, mentally. His blood pressure was on a roller coaster, though.

Robert and I again discussed the fact that he really needs to get busy with the pt and ot sessions. I told him I need him home, but I need him to be able to take care of himself. He needs to cooperate fully with his therapists and really buckle-down. He agreed, and I think I actually heard commitment in his promise. Time will tell.

RSL's better half

26th February 2009, 08:43 PM

Been a busy last several days. Another set-back: Robert's blood pressure has been on a roller coaster and they just couldn't stablize it. Finally called in a cardiologist. He changed all the bp meds and did an electrocardiogram. He brought the bp under control within a day and a half, and discovered that there is nothing wrong with Robert's heart or valves. They are pumping strong!

We thanked him for the excellent job in getting the bp under control, and he told us he wished he'd gotten to Robert before the stroke and he prehaps would not have had it. I still contend that Robert was not taking his meds when it happened, so it would not have made any difference. Robert doesn't appear to remember.

The 2-week approval from the HMO is up tomorrow. I can't see them denying another week, considering the health issues he's had. He has made some improvements in spite of all that. He is still not in any condition to come home, though. He knows it is crucial that he show marked improvement from week to week so he can get as much out of the rehab as possible. I keep hoping he can stay long enough.

RSL's better half

28th February 2009, 10:44 PM

Robert's mom and I went to visit him this afternoon. We ran into his case worker in the hallway. I told her I was glad to see her, as I needed information to give the attorney helping us to get Robert on Social Security Disability. She said she was glad to have the opportunity to speak to me . . . (uh-oh).

Robert is not advancing as quickly as they need him to at this level. The HMO has agreed to allow him to stay until there is a bed available in a nearby sub-acute facility. But he will have to transfer to the sub-acute facility. She said we have to remember that he had a massive stroke and that his rehabilitation is going to take some time. I'm glad she didn't try to tell me that he would not get any better. I know he is, I see it all the time. But it is very slow in coming.

Our new goal is TAM 7. There is no way he can go on the cruise in a week. After I told him what Claudia had told me in the hallway, I told him I want to go on the cruise anyway - I need it. He told me I should go. I will likely worry about him the whole time, but I'm going.

We have no idea how long it will take him to get to the point of independence, when he can come home. This is the news I've been dreading, but knew it was possible. I'm just so drained right now.

RSL's better half

2nd March 2009, 10:22 PM

I saw Robert again this evening. I have been contending that I need him to be independent enough to take care of himself 9-10 hours a day while I work. That means, getting from bed to chair, from chair to toilet and back to chair, then back to bed at night. He needs to be able to dress himself with minimal help. Up till now, I haven't seen how these things would be accomplished or when. Tonight Robert told me he went to the toilet twice today, with the help of the therapist. He described the exercises they did, which involved rising to a standing position, although supported by the therapist. The way he described it reminded me of what Niels did with him in the standing machine. Now we're seeing what he learned applied to a real-life situation.

He is still in the acute rehab, and still receiving therapy. I don't think he's getting as much of their time as he was, but at least he's not just hanging around waiting to be transfered.

He told me he worked a lot with the slider board today. It's one method of getting between bed, chair and toilet. As long as he gets to the point where he can make these transfers on his own, it'll work.

So, when he gets to the new sub-acute facility I know what to ask them to work on. I want them to continue to strengthen both legs, but more practice with the slider board is needed. And more practice in the bathroom is important. If he can transfer in and out of the shower, I can help him get clean - no problem. I can help him get dressed and undressed - no problem. I can make up breakfasts and lunches for him which won't take a lot of preparation - no problem. The wheelchair? No problem.

He's getting closer to coming home. Whatever it takes to get him home - no problem. More time? No problem. I love him. How could I not give him more time?

RSL's better half

4th March 2009, 12:51 AM

Nothing concerning Robert Lancaster is uncomplicated.

The HMO decided it was going to take too long to get Robert into the new facility for him to stay in the acute facility any longer. So, he has been transported to another facility to await an open bed in the desired sub-acute. He could be in this third facility for a week or as long as a month waiting for a bed to open in the apparently popular sub-acute.

And guess which ambulance/transport company was called to transport him? You can probably guess it was the same one who kept us waiting in an emergency room for 4 hours a week and a half ago. I exclaimed my dismay when the case worker told me they had been called. They were to pick him up at 7:30 this evening. At 7:40 I asked a nurse to call the company. "They're just 20 minutes away" was the answer. At 8:30, I asked for the phone number for the company. I explained to the man on the other end of the line what had happened before. I told him I would call every 20 minutes for an update on the position of the transport. He said, "No, ma'am, you won't, because they'll be there before then." Twenty minutes later I called the number. "This is Mrs. Lancaster again. Any idea where they are?" He checked the GPS, then called them on the radio. He told me they had just gotten off the freeway and were just a few streets away. He said 5, 10 minutes tops. Pardon my skepticism. I called again in 20 minutes. He kept me on the phone so I could hear him talk to the driver via radio. As I heard the driver say they were pulling into the parking lot I saw their headlights, because I was waiting for them at the front door of the acute facility. They were an hour and 50 minutes late. I guess I should be happy it wasn't 4 hours?!!!

The facility Robert was moved to is on the same level as the one he spent 3 months in. However, it's not as tired-looking inside. He's in a room that has 3 beds, but he is the only occupant, at least for now. The staff seemed nice enough. Robert was tired, so after all the questions were answered and paperwork completed I left. I have to get up in about 5 hours to go to work, but at least I saw to it that he was settled and comfortable.

More info to follow.

RSL's better half

15th March 2009, 05:04 PM

As you have guessed, I did indeed go on the Amazing Adventure Cruise this past week. I got much needed rest, with no real decisions to make, and I was pampered and spoiled by my wonderful JREF family. It was way cool to get so many opportunities to speak and have meals with James Randi, too.

I spent a day in the onboard spa/beauty salon (while everybody else was in Cabo San Lucas), where I got a full-body massage, a scalp massage, a facial, and haircut and color. I only visited Matzatlan, spending as much time as possible relaxing. I had a great time in Matzatlan because I spent quality time with Forumites. I made some purchases, had a wonderful lunch at a sidewalk cafe, and took in some local history while I was at it.

When we pulled into Puerta Vallarta, I opted to only go so far as the marketplace just on the pier where the ship was docked. I had already made the purchases I wanted, so was really just looking around. When I asked about prices, everything was "$45." I had a few items picked out, and I said, "I can't afford that" and started walking away. I was not trying to dicker, I just wasn't going to pay that much. The prices came down a bit, but still I said no. Finally, the guy asked what I was willing to pay and I told him "$10 each." I had three tops for me an a t-shirt for Robert. I got them for $10 each. I then went to a leather vendor who answered my inquiry about the price of a particular pair of sandals with "$45." Can you guess what I got the sandals for? Yup! $10! That was fun.

The JREF presentations and activities were interesting and fun. Mr. Randi's personal assistant, Sean, is a kick in the head! Mark Edward is an interesting person as well as a gifted mentalist. We got to hear some great stories from Randi, too. And we learned a lot about El Chupacabra (from Jeff Wagg), Mexican UFO folklore (kittynh), and what the harm is in various types of woo (Krelnik).

AZAtheist dropped me off at home, and after spending just a few minutes there I went to see my hubby. Robert was as happy to see me as I was to see him. He's just fine and survived the week without me, thanks to visits and calls from friends and family. I showed him a few of the pics I took with my cell phone and recounted some stories. He was glad I enjoyed the trip, and he liked my new "look."

To my fellow cruisers, Jeff Wagg in particular for making this trip possible for me, I want to say THANK YOU! I will never forget the love, respect, and generosity I was shown. Robert could not be with us physically, but he was there in our thoughts and our hearts. He is also grateful I was so well-taken-care-of.

See you all at TAM 7, hey?

RSL's better half

17th March 2009, 09:31 PM

Vacation's over.

I got a call from our HMO case worker today (new one - Lynn instead of Ollie). She said that Robert has "plateaued." Blaming my insurance company, she said I needed to decide on where he would be discharged to and how it would be paid for. After I cried and told her he isn't being given a chance in the "waiting cell" he's in at the convalescent home (it's supposed to be a skilled nursing facility with rehab services but it's NOT) she promised to see if she could get him into the place we've been waiting for a bed to open in. She also promised a family meeting with her and the therapy and nursing staff at this facility that is not doing much of anything with Robert.

Then I asked if he could go back to the sub-acute he was in for 3 months. "I thought YOU didn't want him so far away from home!" she said. I said if it's the only place he can continue to show improvement, I'd rather be inconvenienced. She said she'd check into it. I told her to give Niels a call. If he doesn't think he can help Robert get any further, I'll give up (no, I didn't tell HER that).

I should never have let him leave Niels. I really thought the acute rehab was the right place. I was wrong - again! Robert needs time and patience from his therapists. The people who have him now have no idea how he was.

We have begun the process, through an attorney, to get Robert on Social Security Disability and Medicare. I don't know how long it will take, though! I'm calling the attorney in the morning, and if I don't like their answers, I'm going down to the Social Security Office. If I have to, I will cry and plead and perhaps have a nervous breakdown until someone helps me. I can no longer just depend on my insurance.

Those of you who pray, please pray that I get the help we need tomorrow. If those of you who are not so-inclined can think of something else I should or could be doing, I'm open to suggestion. I really want this to be over - and I'll accept a wheelchair if that's what has to be. But he must be able to handle daily routine stuff on his own to come home. He has one more hurdle. He needs the right help to get over it.

RSL's better half

18th March 2009, 07:21 AM

RSL's better half

18th March 2009, 11:55 PM

I've decided not to call the attorneys. That process is what it is. I'm calling my insurance company instead. I need to file a complaint about the facility Robert is in and another about the HMO. I believe the HMO put Robert in this position so they could try and build a case that he is not progressing, and therefore they could drop him. I don't know why we no longer have Ollie, but Ollie can tell Lynn what I'm like when I'm pissed. And neither of them have seen me yet when I'm really pissed. I am near that point.

I filed the complaints. The insurance company suggested I start with Robert's primary doctor for solutions to my problems with the HMO. I spoke with Doc, and she has not been pleased with Robert's care in this place either. She asked me to give her until tomorrow to speak with the HMO. She agreed with me that he needs to go back to the sub-acute he spent 3 months in. Robert knows them, they know him, and they have Niels, the only therapist Robert's had who has patience for him.

As I've said before, Robert WILL be given every opportunity to reach his greatest potential, whatever that may be. In the last couple weeks I've let things slide, because I thought he was just being "held" in this facility until he could be transfered. Now I see that was not the HMO's intent.

Ok, this last statement may be a bit on the paranoid side. The HMO is just trying to keep from having to pay out any more money. Doc will talk to Lynn, Lynn'll give Niels 2 weeks to show progress, he'll show progress and continue to do so until we accomplish what we need him to accomplish. Robert is very close to being able to fend for himself at home.

I will also call the sub-acute he spent 3 months in today and ask for Niels to return my call. If he and the sub-acute will take Robert back, that's where he's going. And my insurance company will make it happen. No more screwing around. Robert is not benefiting from all this moving around. I should've just left him with Niels. I don't know why I didn't.

I spoke with Niels. He won't make any guarantees, but he thinks he can do more with Robert. He got somewhat excited (well, for Niels) when I told him I've watched Robert move his leg and upper arm on his own. It's not a lot, but he has been doing it more the last few days. And I can't wait to tell Niels what I saw today: Robert standing from his wheelchair with the help of a couple female therapists and a guardrail along a wall. He sat down after about 15 - 20 seconds, but he did it twice more, putting his weight on his right leg and stablizing himself with his right arm. The thing is, once he was standing, the therpists backed off about 1/2 step, until he needed to sit down again. He held himself up. He did some other promising things as well.

No, Lynn. He ain't done yet. He is still improving and Lynn is full of . . . hot air.

RSL's better half

20th March 2009, 07:46 AM

I would like to say something here. I mentioned it briefly in another thread, but I want to say it where there's a larger audience.

I would not have this "strength" right now if not for the people of the JREF. I won't get into what I believe God has done for me recently, because that seems to anger some folks. So I will just say thank you - to Jeff Wagg for making the cruise possible for me; to Kittynh, Geek Goddess and Sgf8 for taking such good care of me during the cruise; to Loon for making sure I didn't ruin my one land adventure by falling down; to Cleon for the thoughtful conversations which taught me more than he'll ever know; to Elaine, who with Kitty and GG made sure I accomplished one of my goals (getting my hair done on the ship), even though she could not be there with us; to James Randi, who checked with me periodically to make sure I was having a good time, and who, in one conversation, conveyed to me how he feels about my husband, using the same adjectives I've heard Robert use in describing Randi over the years - I can't begin to tell you what that meant to me; and, last but not least, thank you all so very much for the support you show me here on the board every single day. If I have strong wings, it's because some really wonderful folks are holding them up.

I love you all with all of my heart.

RSL's better half

27th March 2009, 07:15 AM

Well, Robert has settled in at the sub-acute he was in before. Niels is back to torturing him and he's back to half-heartedly complaining about it.

We transfered Tuesday late afternoon. The HMO made me pay for the transport - "It's a lateral move at your request. He would get the same treatment here." I was told. The point I had was that he was NOT getting the same treatment. Well, anyway, the transport company she made arrangements with for us was that same one that tells us they'll be there at a certain time, but arrives 2 - 4 hours late. I told the charge nurse about that, and that they were going to charge me $291. She handed me a card for another company - GOOD FAITH. I called. They were there to pick Robert up in an hour and charged me $110!

I'm buying the wheelchair van tomorrow. My BIL (Trish's husband) is helping me out. Both dealers I found online are in their neck of the woods, so he's doing some preliminary footwork for me. He already has two vans lined up for me to look at and an appointment with a sales person. I've done a bit of research and know what I want, and he went out and found it for me. Good guy. He also knows someone who will run DMV checks on the VINs of both vans today. If I go with one of those he picked, there'll be enough left over for a motorized wheelchair for Robert, too.

More later.

RSL's better half

28th March 2009, 11:37 PM

I bought a used van conversion today. It's a gold 2001 Dodge Grand Caravan with a side door ramp that folds out with the tough of a button, or with the touch of a magnet on the keychain to a spot on the tail light. Both the driver and front passenger seats can be removed, and there's a t-bar to lock a wheelchair in place. Oh yeah - I forgot to mention that the van "kneels" 3 inches on hydraulics to make the ramp less steep and easier to push a wheelchair up or down. It's way cool. There's a bench in the back, and still a bit of "trunk" space - and, oh yeah - there's a button or switch that opens the back hatch automatically as well - and it beeps an alarm when it starts to close.

I don't have it yet. They will deliver it to me on Monday afternoon. They have done work on the van to make sure it's safe to drive, but they had not cleaned it up yet. They will also change out the stereo - replacing the tape player with a cd. Something was rattling a bit - probably a panel - as we test-drove it, so that will be checked out as well.

I was treated very well and feel we got a fair deal. We haggled and got $1,000 knocked off the original price. The sales lady told me that when we no longer need the van, she will help us sell it (by consignment). She ran a Car Fax on it for us, which detailed how well it has been cared for and that it has had 2 owners and it has not been in any accidents or anything.

I want to stress to you that Robert and I would not have been able to make this purchase without the monies raised by Skeptics Unite and ChillZero's t-shirt sales. It's comforting knowing that we will not have a car payment now that we are dependant primarily on my salary. You guys, and some wonderful folks from other forums and websites, made this possible. Thank you.

On the subject of ChillZero's t-shirt sales: If you have not yet purchased one in support of the StopSylvia website to wear at TAM 7, please do! Robert has every intention of being there. I've paid his registration and reserved a wheelchair-accessible room at the South Point (we'll see if it'll still be necessary in July). It would please him (and make me cry) to enter a room filled with folks supporting his cause. It might even help him get back to his passion - both websites! And, if you want to check out where the bulk of your donations have gone, we will be driving the van to Vegas. I'll be happy to show you all the cool magic tricks it does!

RSL's better half

30th March 2009, 08:59 PM

Ok. {breath} {breath} So, I called Robert to tell him I just got the van and that it is way cool. We chatted a little. He says he had a session with Niels today and he almost punched Niels for the pain he was causing. I explained, yet again, that whatever Niels does with him from here on out is gonna hurt. He says, "Yeah. I know. We can talk about it later." Then he talked about getting up at the parallel bars today - are you ready? {breath} Robert said he took three steps today, holding himself up with his right arm and dragging his left leg! He said Niels was pretty happy about it. I did a bit of squealing.

So now I'm wondering: How long will we need a wheelchair van? :boggled:

RSL's better half

31st March 2009, 09:50 PM

I saw Niels today when I was visiting Robert. He told me he was pleased with what the left leg was showing and was hopeful for a slow progression. Then today Robert took what, in effect, was a flying leap! Niels said that not only did Robert take 4 full steps (with Niels supporting his left knee) but he also starting kicking his leg out from the knee (in a sitting position). Niels was actually very excited. He can't predict what will happen next and he is loving it!

Niels has ordered a brace and, I dunno, something else for Robert. He tried to tell Robert he thought there was a higher power at work here. Robert wasn't buying it. So he said "I know what a certain someone else would say." To which Robert retorted: "Yeah I know what Susan would say, too!" Then they both smiled at each other.

God bless Niels Nielsen! Oh yeah! He already has! And I will be forever grateful and try to listen more when God is SCREAMING IN MY EAR!

Let's hear the choir of cheer leaders! Go Niels! Go Robert! (I'll just be back here in the corner saying quietly, "Go God!")

RSL's better half

4th April 2009, 11:34 PM

My aunt and uncle have for years taken their two daughters (born 11 months apart) to a fun local restaurant for a combined birthday dinner, and my mom and I were usually invited. My uncle has passed on, but my aunt is continuing the tradition. My mom is also gone, but I continue to be close with this family and would not miss the annual birthday dinner.

The place is called The Northwoods Inn. It looks like it's made out of logs and has fake snow on the roof. Inside, sawdust and peanut shells are on the floor, and you sit in the bar eating peanuts and having a drink while waiting for your party to show up. When everybody's there, they seat you at long wood tables (depending on the size of your party). Their two signature salads and garlic cheese bread are served family-style, but your chosen meal is served individually - on huge plates. You get a large portion of meat, a Kenneback (huge) baked potato, and rice pilaf. I always bring stuff home.

Robert has attended the last few annual dinners with me. My aunt adores him, and the rest of the family seems to think he's pretty cool. When I received my emailed invitation, I decided to ask Robert's doctor if he could leave the facility for a few hours. Why not? He can sit in a wheelchair just fine, and we now have a wheelchair van. Doc said the same thing : why not?

So, with some help from his male nurse, we got him all strapped-down safely in the van, waved good bye to the nurse, and we headed out for the hour-long ride to the restaurant, which is near where we live. The van worked beautifully, and I enjoyed having someone to talk to during the long drive. We had a wonderful meal with my wonderful family and everyone was glad and surprised to see Robert. My aunt's nephew (she's my aunt by marriage) helped me to wheel him around and back into the van, where I securely fastened him in again. Everything went as smoothly as it could have. It was a wonderful outing, and I learned a lot about what life will soon be like. Robert was happy as a clam getting out for a reason other than a medical one!

It was a good day.

RSL's better half

7th April 2009, 09:48 PM

Just got back from seeing Robert. He was in good, if tired, spirits. I got to hear that he had walked the entire length of the parallel bars today, with Niels' help on the left leg. He said when he reached the end a cheer went up in the therapy room. That's just grand because he's happiest when he hears applause. Things appear to be moving along swimmingly. He was weighed today and is now down to 248 pounds (from 380 to 400 he was before the stroke).

I would like to address something I read in another forum, if I may, since I know the members are reading these updates. I would wager they never thought in a million years I'd ever see their posts, and I actually happened upon them on a fluke. Anyway, I was criticized for the way I have dealt with hospital staff, doctors and HMO personnel. A person said they worked in a hospital, and knew that nurses were very forth-comming with information for family members if the family member was nice about it. They said that hospital staff hate dealing with people like me, that doctors don't want to talk to people like me and so will usually hide from people like me, and that I should be bringing goodies and such to the staff and befriending them instead of being such a B-word. They said I'd never get anything from anybody behaving the way I have behaved.

To that person I say this: YOU ARE THE ONE I WOULD BE SETTING STRAIGHT, PAL. When I have had to get stubborn, head-strong, even angry, it's been with good reason. And, I will have you know that when I put my foot down I get exactly what I want, because I have been RIGHT. Also, I am well-known at each facility Robert has been in for the goodies I bring doctors and staff. Robert and I are well-loved in each place he's been in. I've had to get pretty tough with our HMO case workers twice. Each time they were making judgements on my husband's progress (and threatening to pull funding out from under us) based on incorrect or false information.

I've said it before, I'll say it again: Robert will be afforded every opportunity to reach his full potential, whatever that may be. I will see to it! Do not put yourself up as a road block because I will run over you to make sure my husband gets the care he deserves. And I know for a fact he'd do the same for me (probably a bit more tactfully, but he'd be a nuisance to this particular poster).

So, Poster, and you know who you are, please tell me what hospital in what town in what country you work and, trust me, we will never set foot inside the door! It's staffers like you who give the rest a bad name.

Thanks, JREF Forumites, for allowing me to vent.

RSL's better half

9th April 2009, 09:34 PM

Beeg Seestor could not post for some reason, so she sent me this via email, and gave me permission to share:

"If receiving goodies is what motivates hospital staff and other health care professionals to do their job, maybe we should write to congress so they are sure to include cookie recipes in any health care reforms. Perhaps there should be a chart to indicate the appropriate goody for each type of employee. Maybe something like…

– janitor’s could be given store brands bought in bulk; they could then clean up the crumbs they would inevitably get on the floor

– anesthesiologists would, of course, get “special brownies” prepared from recipes perfected in the ‘60’s

– surgeons could be given fortune cookies to delicately open and find something inside

– nurses would receive angel cake

– HMO personnel would receive devil’s food cake

– transport drivers would be banned from receiving goodies since, after the initial sugar rush, theeeey mooove tooo slowwwwly

– and so on…

It sounds to me like this Poster has never been or known anyone on the other side of the bedpan.

You keep up the good great work, Sis!"

As for your update this evening: Niels told me this afternoon he will concentrate solely on walking next week, and that Robert is progressing much faster than he had hoped!

RSL's better half

10th April 2009, 10:52 AM

If you are a skeptic who has survived a stroke, please PM me. I've started a thread in Community asking for the same thing: http://forums.randi.org/showthread.php?p=4605519#post4605519

Robert will be doing a short paper at TAM 7, and would like to interview you.

RSL's better half

12th April 2009, 11:46 AM

I wanted to post some pics I took of Robert yesterday, doin' the walkin' thang. I have a new cell phone and the pics are apparently larger than the ones on my old phone (and look better, too). I was able to email them Ok, but they are too large for the host here. How can I make them smaller? Do I have to have special software?

RSL's better half

12th April 2009, 10:52 PM

Here is Robert standing for the first time on his own in the place he was in while waiting for a bed in the place he never got to.

http://forums.randi.org/imagehosting/thum_1729449e2c0de6f17e.jpg (http://forums.randi.org/vbimghost.php?do=displayimg&imgid=16009)

Here he is preparing to stand at the the parallel bars in the place he's in now.

http://forums.randi.org/imagehosting/thum_1729449e2c1b5a41ba.jpg (http://forums.randi.org/vbimghost.php?do=displayimg&imgid=16010)

And Robert walks! This is the PT on Saturdays, Lee.

http://forums.randi.org/imagehosting/thum_1729449e2c20126ccf.jpg (http://forums.randi.org/vbimghost.php?do=displayimg&imgid=16011)

RSL's better half

17th April 2009, 08:06 AM

Niels has had Robert working all week with what's called a "hemi-walker," among other names. It's a collapsable thing that when collapsed looks almost like a kitchen step-ladder without the ladder. It's sort-of a cross between a walker and a cane - but no, it's not one of those canes with four feet. I'll have to take a pic of it for ya. Suffice for now to say that it's a small walker used aside the body instead of in front. Yesterday, with Niels' help, he walked about 35 feet with this thing! He walked the length of the therapy room, out into the hall, then down the hall a little. Niels and Richard were sooooo excited telling me about it.

Richard (head of therapy dept.) also told me he spoke with the insurance company's case worker yesterday. This is not the HMO case worker. This is the person at the insurance company who the HMO case workers deal with. She expressed concerned that Robert had been going from facility to facility, and he explained to her why. Looks like I need to give her a call as well.

A friend of mine for about 25 years is in town and went with me to see Robert yesterday. I thought I'd been giving pretty detailed email updates on Robert to all our family and friends. Apparently, not detailed enough. Like my cousins at the birthday dinner I took him to, Laurie was surprised at how well he's doing - particularly that he can talk intelligently. People seem to expect him to be non-communicative or a blithering idiot, I guess. He was talking after about the 6th week. It's been over 8 months, for Heaven's sake. Guess nothing can really describe how he's doing better than a visit can.

Just to add some "levity" to my life, someone left a Notice of Trustee's Sale on my door yesterday. I'm renting. Immediately, because I don't know my landlady well, I assumed she had not been paying the mortgage and I was going to have to find another place. I finally found an address on the notice for the property in question, and it's the same number as our place but three streets away! Idiots! The only similarity in street names is they both start with a P. Now I have another phone call to make.

RSL's better half

19th April 2009, 08:25 AM

http://forums.randi.org/imagehosting/thum_1729449eb31e099876.jpg (http://forums.randi.org/vbimghost.php?do=displayimg&imgid=16086)
The therapist helping him is the director of therapy, Richard.

http://forums.randi.org/imagehosting/thum_1729449eb3209ada59.jpg (http://forums.randi.org/vbimghost.php?do=displayimg&imgid=16087)

http://forums.randi.org/imagehosting/thum_1729449eb32b7dd3e3.jpg (http://forums.randi.org/vbimghost.php?do=displayimg&imgid=16088)
Ain't he cute?

RSL's better half

24th April 2009, 07:38 AM

I finally got Niels to give me a "guess-timated" time frame for when Robert will be coming home. He said "within a month," which is what I thought. Hosea (OT) is starting to teach him the "daily routine" stuff. It still sounds like Robert will need a lot of help with "things." If so, we will need a daytime, at least, care giver.

Beginning in July and through the middle of August, my employer, a school district, will be trying to cut back expenses by closing the administrative office (where I work) and all schools on Fridays. My hours will not be cut back, but I will be working 10 hour days Monday through Thursday. I know I can handle the hours, but with Robert waiting for me at home . . . Difficult times ahead. A bright spot, however, is that I will get TAM Friday off! We can head for Vegas Thursday night.

Finances are starting to really tighten-up. I have an attorney working on Social Security Disability, but it's a very slow process. In the meantime, my salary is it. I've gotten used to eating a lot of fast food - now I'm gonna need to start making a sandwich to take with me when I visit Robert. I've also handled stress by spending money on clothes a few times over the last almost 9 months. Not gonna be able to do that any more - or go out to eat or the theatre with friends. I still have no way of knowing how much money he'll get from SSD. Oh well! God knows I've struggled before! It appears to be the family curse!

We are both so excited about TAM. We want to see everybody! It should be great fun!

RSL's better half

25th April 2009, 08:40 PM

Yesterday afternoon while I was still at work, my Aunt Patty who lives in Vegas called. She had been really ill, had a couple surgeries, and went through lots of physical therapy during the time that Robert has been hospitalized. She had a motorized wheelchair she wanted to give Robert. She has a manual wheelchair and a walker and decided she didn't want or need the motorized wheelchair.

So I got in the van after work and headed for Vegas. The usual 4-hr drive took about 5 1/2 hrs due to Friday evening traffic. I visited a bit with her and my cousin, Roger, who is her care giver, then curled up in a recliner to sleep. This morning Roger and I put the chair in the van and I drove to where Robert is.

Robert loved the motorized wheelchair! His therapist for the day showed him how to use it, adjusted it for him, and made him run it in a slolum. He took to it like a fish to water! His brother and mom, who were also visiting, were amazed at the things he is now able to do - like, he had to sit up in bed and scoot along the side of the bed, then slide into the chair. Like I said before, there is nothing like paying him a visit to find out first-hand how he is doing. Neither of them had seen him since I went on the cruise.

I try to be descriptive about how well he's doing, but words just don't do him justice. You guys, Robert is improving steadily and tremendously. I wish you could see it for yourselves. But I guess you'll have to just wait till TAM.

RSL's better half

27th April 2009, 10:52 PM

http://forums.randi.org/imagehosting/1729449f68a08768f2.jpg (http://forums.randi.org/vbimghost.php?do=displayimg&imgid=16163)

He tried it out before adjustments were made. Chair had been fitted to a woman who was 5'4". Robert is 6'1".

http://forums.randi.org/imagehosting/1729449f68aa782c0e.jpg (http://forums.randi.org/vbimghost.php?do=displayimg&imgid=16164)

RSL's better half

30th April 2009, 07:34 PM

Finally! Pics of Niels that don't make him look like an alien! And have a gander at my hubby's skinny legs!

http://forums.randi.org/imagehosting/thum_1729449fa50ca811f1.jpg (http://forums.randi.org/vbimghost.php?do=displayimg&imgid=16187)

http://forums.randi.org/imagehosting/thum_1729449fa50ecf0134.jpg (http://forums.randi.org/vbimghost.php?do=displayimg&imgid=16188)

RSL's better half

5th May 2009, 08:49 PM

Well, it's been almost a week since my last post, so I thought I should say "something."

There's not a lot to report. I've become rather concerned with the fact that Robert still wants to be "put back to bed" right after lunch. He aparently usually has breakfast in bed, then he is put into his wheelchair via Hoyer Lift by 9, when he has a group OT session. He stays in his wheelchair until after lunch, and is asking to be put back to bed by one. He gets two different types of PT sessions a day: one by Niels, another by Richard, Head of Therapy. Neither of these sessions is scheduled, so he never knows when they will take place. Sometimes he'll stay in his chair until PT gets to him, but most often he does not. By my judgement he is spending about 4 - 5 hours a day out of bed (counting therapy sessions), which I find unacceptable. I don't mind if he needs a nap after lunch, as long as he's back in the chair within two hours.

Moreover, when he IS in his chair and is between sessions, he spends the time in front of the TV watching infomercials. He can operate the wheelchair just fine. He needs to get out in the hallways, or even outside for a while. I believe he needs to mingle with other people, see other surroundings. He isn't going to do this on his own. I don't know why, since he is usually such a social being.

So, I talked to Niels and to the nursing staff about it today. I've decided I will call before I go out there this Friday (I usually go on Tuesdays and Thursdays and weekends, but have a late meeting this Thursday) and ask them to make sure he's in his chair when I get there. I will put the laptop in front of him, as I did today, and force him to navigate it himself (instead of me reading to him) when I arrive. Once I know his therapy sessions are through for the day, Drill Sargeant Susan will make him wheel himself out into the hall and perhaps outside. I told him he can call it "TAM Boot Camp!" He needs to learn to stay in his chair as long as the conference is going on, and if he wants to join in social activities he'll need to be in it even longer.

It's wonderful that PT is teaching him to walk, stand and pivot. OT is not training him on the toilet, or to shower himself, or how to stand and take his clothes off or to tie his shoes. No one is helping him to shift from being in a hospital situation to what it will be like at home. I spoke to Richard about this yesterday and he said he'd talk to Robert. I asked Robert today if Richard had talked to him, and he said he had talked to Richard today about the little old lady residents who have become RSL Groupies and won't leave him alone. Richard didn't say a thing about what he and I spoke about yesterday.

So, now I'll have to call Richard again. This time I will insist that Robert receive the "home training" I have requested. He will need Speech Therapy at least a couple times a week, so he can be taught what to expect and how to behave when he goes home. A couple weeks ago the OT fella told me he was going to teach Robert to use a commode. The next thing I knew, Robert started group sessions where they exercise and sometimes throw a ball around! That's not what he needs to know how to do when he comes home!!! As far as I know, he's only been on the commode a handful of times. Again I will stress that he needs to be better prepared for the different world he will enter when he comes home, that he needs the proper Occupational Therapy - commode training, more training with dressing and undressing (although I did watch him take off his t-shirt today, one-handed, when his nurse changed his diaper), etc.

Have not heard a peep from the HMO lately - and that worries me. I had faxed the insurance company case worker a week or so ago, giving her my cell # in case she had questions, and she has not even acknowledged my fax. I don't know how long they will continue paying for all this. Besides, Robert needs to come home. He needs to be here, and I need him here.

RSL's better half

11th May 2009, 08:41 PM

So, Friday was an "interesting day." I banked enough hours to get a half day off, so I drove the 50 miles to see my hubby and grabbed lunch for both of us when I got near. Poor Robert wasn't feeling well "digestively," so I didn't get to play Drill Sargeant Susan. He did play about on the computer some, and was here in the forum, as some of you know from the post he made in the RSL in Hospital thread. He poked around on his own, with minimal help from me.

I did get to talk to Richard (head of therapy) about my feelings on Robert needing some cognitive therapy. He disagreed, sited that in order for that type of therapy to work he'd have to give a speech therapist an hour to an hour and a half a day which would take away from his physical therapy (sub-acutes are lucky to get approval for 2 hours of therapy a day from insurance), and told me that instead Robert needs to get out of the hospital environment more. Spoken like a politician, Richard, thanks. Turned it right back on me to do something about my concerns, even though I believe it's your job. I don't like his response, but since I have no way of knowing whether Robert's being out more will help in the areas I want addressed, and Richard is supposed to be the expert, I have decided to give it a run and see if there's any improvement. I'll give it no more than 2 weeks. If it doesn't help in those areas, I will be quite insistant that my concerns be addressed.

Saturday Robert was still not feeling very well. However, he spoke over the phone at great length with Skepticality, who survived a stroke similar to Robert's. Luckily, Skepticality completely understood when Robert was unable to continue the discussion due to excrutiating gastric pain. It was so bad, I saw tears in Robert's eyes. I found a nurse (LVN to be exact) who explaiined to us what was going on and actually did something about it. Robert has been suffering with this for weeks and no one understood until now. It's a combination of the paralysis, medication, and length of time he has been pretty much bed-ridden. The problem was easily solved, but our day was, well, for lack of a better word, wasted.

Sunday I picked him up and took him to see his mom, who went out to lunch with us. Robert regaled (sp?) her with story after story and she was thrilled. He told her about his "groupies," his roommate, his therapy sessions. We spent almost 3 hours in the restaurant.

Tomorrow I will get off work 2 hours early (I banked 2 hours extra today) and I am taking him to the movies. It's been a very long time since we've gone to the movies together. We had for some time set aside one night a week as "date night" before the stroke, and usually had dinner and took in a movie. So this will be sort of getting back into our "normal routine." I'll let you know how it goes.

RSL's better half

12th May 2009, 10:19 PM

Our date went pretty well. We saw the new Star Trek and both really liked it! We went to Applebee's for dinner afterward and talked about the movie.

I tend to stress-out a little on these outings, which tuckers me out. Well, that and the fact that I went to bed about 10:30 last night and woke up at 4:30 this morning and got to work by 6:30 am. Now it's after 9 pm and I can barely keep my eyes open. I'll go to bed, sleep for about 3 hours, get up and go to the bathroom, go back to bed and lay awake worrying about something or other, finally get to sleep for another 2-3 hours or so before the alarm goes off.

When I had Robert beside me, I could ask him to "spoon" me and I'd go right to sleep - all safe and warm, wrapped up in his arms, all worry forgotten for a while. I could actually make the world go away when he was holding me. It's been more than 3/4 of a year since I've had that comfort.

RSL's better half

14th May 2009, 09:42 PM

I made one little request, not expecting much to come of it with the economy the way it is, but Forumites always rise to a challenge! I started this thread this morning, if you feel inclined to help contact Hutch:
http://forums.randi.org/showthread.php?t=142768

RSL's better half

17th May 2009, 11:11 PM

I am so blessed. Mainly to have a certain Robert Lancaster in my life. I told his Beeg Seestor that the two of us just need to hang onto his shirttails and we'll be just fine.

JREF Forumites have done so much for us. You have told me from the first day of Robert's illness to just ask. I have been reluctant. My father taught me that if you can't get it for yourself, you don't need it - do not accept charity. Robert has the same sort of pride. He has had to be pretty down to take, let alone ask for, any help. When Robert had a stroke, so many people were shocked and wanted to help. I didn't know what we'd need, and that same old pride came creeping up. Then I realized, you needed to be needed. You all felt so helpless that most of you lived too far away to do any more than donate money - which is the one thing I was conditioned not to accept - and lend me the moral support I needed to get through each day of these last 9 1/2 months.

I understand that what my husband has done through his websites has not only been important for truth, but a huge leap for the skepticism movement. He is a product of the JREF, and in particular this forum. James Randi is and always has been his inspiration for "doing something" about his beliefs. I had a small part in his inspiration, but it was all of you, and I do mean all of you, who pumped him up with opinions and praise with each new article he wrote, inspiing him to do yet another article. Yes, you can all take some credit in his work.

The fundraising account that was set up bought us a vehicle that would make it easier for Robert to get around. It's so beautiful, and I can't wait to show it to everyone coming to TAM7. We still have a few outstanding medical bills not covered by the insurance and the remainder of the fundraising account will pay them off, with even a bit more left. The bit more will be held until I figure out what else Robert needs after he comes home. Plus, a JREFer who loaned Robert some money for a personal problem he could not pay to get resolved forgave the debt right after Robert's stroke - you know who you are and I can't thank you enough.

Another JREFer wanted to donate a large sum of money directly to Robert. I knew Robert was dealing with his pride and accepting the $20 here, $100 there from many, but the amount being offered was more than I thought Robert would accept from one person. So, it was offered instead as payment for Robert (with me in tow) to be guest of honor on the Amaz!ng Cruise to Mexico, which I thought was an attainable goal for Robert, and so I accepted it. Robert could not go on that cruise, but I did. I got some much needed rest, was miles and miles away from the stress I'd been under, and I was pampered and spoiled by just about everybody else in attendance. Robert's face lights up whenever he hears me tell people about it. He was so grateful, and so proud of what you all did for me.

And, most recently, Janie, Robert's Beeg Seestor, was crunching numbers and running down scenarios on how she could get to TAM7 to see Robert's come-back into the JREF fold. It was important to her, important to me, and just as important to Robert. I held back on asking for help because, like Robert and me, she was taught not to accept charity. When it appeared to me that she was running out of options, and I knew we could not afford to help, I asked you. In one day Janie had a bed for three nights in a Forumite's room, airfare from Tennessee, AND a full scholarship to TAM, paid for by Forumites. Janie was as overwhelmed as I was. By the time she knew about it, it was done. She could not say no.

Both Janie and I know that, while all this benefits us, you did it for Robert. He is, indeed, a very special man . . . but moreso due to the company he keeps, the friends he has made. He thinks the love you have showered on him is "surreal." I just think it's wonderful. So again, Forumites, I say Thank You . . . from the bottom of my heart. And, "See you at TAM 7!"

RSL's better half

22nd May 2009, 08:14 PM

Apparently the posters over in the Community forum don't know that Beeg Seestor is something special! Hmph! Any body here want to wish her a happy birthday?

http://forums.randi.org/showthread.php?t=143535

RSLancastr

24th May 2009, 07:16 PM

(Posted by RSL's better half not RSLancastr)

I left the laptop with Robert yesterday with strict orders to guard it with his life! Looks like he obeyed. I got it back today.

One of these days I'll get someone over here to hook up the desktop! I'm much more comfortable with a desktop, and the laptop was given to Robert with the intent he use it for his website work when away from home. So far I've used it more than he has.

Robert wanted to have another outing, and so we went to the movies and a late lunch after. This time we saw Terminator - Salvation. Lots of special effects which we always enjoy, not much story-wise - but hey, it's a Terminator movie. Nice little distraction from real life for a change. Went to Sizzler for "linner" and neither of us had any steak (what Sizzler is known for). Decent, inexpensive meal.

I think the exhaustion I'm feeling now is more from stressing over taking care of him than the physical work it takes to get him hooked up in the van. Of course, once he has his own wheelchair we will be getting the t-bar thingie attachment put on the bottom of the chair which will snap into place in the front passenger area and I won't have to worry about strapping him down good enough that the chair doesn't move around the back of the van!

RSL's better half

28th May 2009, 10:55 PM

Let me start off by apologizing for posting as Robert last time. I'm sure you were able to figure out that he had been using the computer and I forgot to log him out before I started posting. But the good news here is that he is showing an interest in the computer again. He is still easily distracted, but he's navigating the internet much better and remembering how to do things he wants to do.

I've applied for a position at work which is being vacated due to retirement. Today I took a written test with 7 other people who have also applied. My score ranked 2nd. The woman who got the top ranking must have had a lucky pencil. ;) Maybe mine was unlucky. The next stage is being interviewed by a panel.

The school district I work for also held the annual Employee Appreciation celebration today, and I got my 20-year pin. It's tiny, worth very little, but symbolizes an acheivement I never would have thought I'd attain. Prior to working for the district I went from job to job every 2 -3 years. With each new job I'd have more salary and better benefits. I was 35 when I started working there - with some college but no degree. It didn't take long for me to realize that there was nothing better out there for me.

I had hoped I'd be able to take my pension this year and go find a job doing something I really enjoy. Even if all I'd get paid minimum wage, my pension would at least pay the rent. Then, after starting a relationship with Robert, I thought perhaps I could become a writer (which has always been my desire). We could make a go of it on his salary and my pension. Retirement is now out of the question altogether - at least for a few more years. I now need to concentrate on getting a higher paid position so that when I do retire the pension will be more.

Falling in love with Robert Lancaster has changed my life in so many ways. Some wonderful, some challenging. Certainly never dull.

RSL's better half

2nd June 2009, 12:11 AM

So, I've had a rather busy day.

I was interviewed by a panel today - a bit like the Spanish Inquisition, maybe - for the Buyer position. The top two candidates will go on to be interviewed by my supervisor. It's weird. I wasn't at all nervous. I am well-qualified for the job, but I don't really care if I get it. I even expressed something to that effect to the 5 people on the panel. Not exactly the smartest thing I've ever done.

Next, I had called a "family meeting" with Robert's therapists, head nurse and the social worker for the nursing home. I had intended a different agenda at first, where I was going to insist Robert receive therapy from a Speech/Language Pathologist. Over the weekend I was convinced by people who care about me and about Robert that I should pick my battles, and that this one wasn't worth fighting. In the last week or so, several people, including my husband, have told me I'm being too controlling, that it's time I need to let go. After 10 months of fighting for proper care for Robert, this is not an easy thing for me. However, by the time the meeting started I was merely asking where Robert is now, how much longer will he stay there, when will they begin to "potty-train" him, and what can I expect when he comes home. Richard, the head of therapy, gave me the run-down.

Robert will likely go home in just 3-4 more weeks (just in time to get ready for TAM). "Potty-training" as I call it will now begin in earnest. Nurses have already begun to help him get from bed to wheelchair and back to bed mostly on his own (which they've been afraid of until now), without the use of a Hoyer lift. Richard informed me, however, that it could take a year to completely potty-train Robert, so much of that will have to be done at home. Since I'm so squeemish, Richard suggested we install a bidet (sp?). That way, nobody has to wipe anything. Richard also pointed out that once Robert is home, every-day routine things will feel more normal. Richard is convinced we, as a couple, will get through the transition with flying colors. He will provide as much assistance as he can now, and will give me his phone number to call any time I have a question after Robert goes home.

And finally, Robert and I went to dinner to celebrate our 2nd wedding anniversary, which is also the 7th anniversary of our first date. If I didn't have to get up by 5 am we'd have gone to the movies again. But, alas, I do have to get up early. But dinner was fun and we talked for a couple hours about our relationship, about our pasts, about old songs, about his therapy, about "going home." It was a very nice meal/visit.

RSL's better half

9th June 2009, 11:16 PM

Well, I had much more, but lost it. This is my second attempt at this post.

First, here are the latest pics:

http://forums.randi.org/imagehosting/thum_172944a2f39fa5874a.jpg (http://forums.randi.org/vbimghost.php?do=displayimg&imgid=16632)
Robert stands on his own.

http://forums.randi.org/imagehosting/thum_172944a2f3a500913b.jpg (http://forums.randi.org/vbimghost.php?do=displayimg&imgid=16633)
The only time Niels touched him this session was to "cue" him. Here, he reminds Robert to move his left shoulder forward as he takes the step.

http://forums.randi.org/imagehosting/thum_172944a2f3ab0ce1dc.jpg (http://forums.randi.org/vbimghost.php?do=displayimg&imgid=16634)
Niels is "hands off!" Robert's confidence level has increased tremendously.

Next Tuesday we'll have another "family" meeting to determine when Robert will be discharged. We're shooting for June 26th, and Richard seemed to indicate that target date is reachable. Robert has used a commode over the toilet in his room and said it wasn't too difficult for him. I have purchased a toilet seat bidet (with funds from the fundraising account) which I hope will be easy enough to transfer to from his chair.

I did not get the Buyer position, but a position I'm more geared for is now opening, and it's the same salary as the Buyer. It's an Account Clerk IV position, and it's responsible for state and federal reports which determine how much money our school district gets. It's a pretty important job. We'll see.

RSL's better half

11th June 2009, 08:01 AM

Ok, Folks. I have no one else to ask for help but you. Everyone close to us either has health issues or is otherwise engaged. I have about 2 weeks to get stuff done, and I can't do it myself. Here is a list of what I need to get done. If you can help please PM me.

1. Put Robert's desk together (already assembled, just need books and stuff organized on it) and set up a pc, hook up internet cable.

2. Move stuff around and figure out the most efficient place for the bed considering Robert needs to sleep on the right and must be able to get around the bed with his wheelchair.

3. Move heavy stuff from the condo to the storage in the parking area.

4. Hang rod and drapes (need drill). Also need a shelf over the washer and dryer and hang pictures and paintings.

5. Install toilet seat bidet, two wand shower heads, and two bathtub organizers.

6. We need a new queen size mattress set and someone to haul away the old set.

RSL's better half

11th June 2009, 09:34 PM

Wow. The sound of crickets outside right now is so appropriate. I felt weird asking. Shoulda gone with my gut. Belay that last post, Folks. Guess I'll have to figure things out on my own. Sorry if I made anyone uncomfortable. I didn't mean to.

RSL's better half

16th June 2009, 11:15 PM

First of all, it looks like I may be getting help to prepare the place for Robert. My church family is pitching in, and Gilmar has offered his handyman skills.

Now to the "family meeting" we had today:

Richard (head of therapy) said Robert is ready to go home at any time, but would like a little more time to work on "transitional" things, "potty training" being top priority (potty training is my term). Robert may go home as early as Friday the 26th, but may need to stay as long as July 1st. I will need to take 3 weeks FMLA (Family Medical Leave Act for all you fur-in-ers) starting June 28th. Niels will also need to train me on what sorts of exercises Robert needs to continue and how to generally care for him.

We talked about Robert's specific needs in the condo. I ran some of my own thoughts by Richard - two poles, one next to the bed and one by the toilet, to give Robert leverage. Richard seemed to think this was a good idea. So, Richard and the social worker, Theresa, will submit a list of items needed which includes the poles, a manual and a power wheelchair. a shower bench and handrail, and a few other things to our HMO. I may need to make a plea. That's Ok. I'm used to making an argument for why Robert needs what I say he needs. Along with Robert's head nurse, we agreed to take him completely off diapers effective immediately.

We're going to try to get the HMO to agree to sending an OT out to our place to come up with some solid suggestions on what we still need to do. Also, they are suggesting that Robert gets some in-home outpatient therapy. The best argument for that is that I HAVE to go back to work and he will be on his own for part of the day (my son will be here until the afternoons).

So, we are begining the transition to the next phase of our lives. Discharge date is flexible and depends on Robert. Here we go . . .

RSL's better half

18th June 2009, 08:53 PM

Hey, Everybody!!!!

The HMO set discharge date at June 30th! Aaaaannnnd . . . they agreed to purchase the motorized wheelchair! The first reaction from them in regard to the poles he needs and some of the other stuff is "I don't think that will be covered, but I'll see what I can do."

I'll keep you posted on that in case we need more financial help. I spent the last of the fundraiser money on a new, lower bed. The bed we've been sleeping in is just too high for him to get into. I can proudly say that I got a real deal on the bed - real deals are my life! The bed was on sale from $999 down to $799, and I used a $100 coupon I printed from the store's website, which brought the price down to $699! It's got what they call a "Euro-top" which is a little extra fluffy piece on top of the mattress. A way cool mattress set and a really good deal. The frame is just a simple metal frame with no head or footboard, and the salesman upgraded the frame to one with wide wheels, which he says will last us longer (I told him our weights). It's 22" from floor to top of mattress, which is a good foot or more lower than our current bed.

I watched Robert walk today, and not just in a straight line as I've seen in the past couple months. He walked out one door of the PT gym, turned right and right again and went back into the gym through the adjacent door. I watched him stand, take a step forward, two steps to the left, two steps to the right, and then a step back while reaching for his chair as he aimed his bum into the seat. You have no idea just how advanced these two abilities are! Well, if you have recovered from a stroke you may have some idea.

Robert told me that toilet training has been a bit frustrating, but coming along. He's disappointed that he has to stay until the 30th, but I reminded him that it gives me a few more days to get the place ready for him.

My boss informed me today that the job vacated by the woman who beat me out of the Buyer position will not be filled right away. Figures. It's just the type of work I would excel at. But, ok. Maybe it's time to revisit the idea of retiring from the district and getting a job I actually enjoy, taking my pension with me. Time will tell.

RSL's better half

21st June 2009, 07:32 AM

Good morning, Folks. Happy Father's Day to all you Dads!

Well, Gilmar came over yesterday and worked his tail off! First, we went and picked up the little U-Haul truck I rented, then we packed it up with about 20 or 25 boxes of stuff I still had not unpacked, or that I had no place to put, and a few pieces of furniture that fit in the condo but would make it more difficult for Robert to manuever. My son, who had worked until 3 in the morning, woke up and helped us get the last few items on the truck and then helped us unload everything at a storage facility.

I took Gilmar to lunch at my favorite restaurant (Ruby Tuesday's), and when we got back he helped me move Robert's desk out to the dining area (which will not be Robert's office space), move furniture around in the bedroom and decide where the new bed that would be delivered late afternoon should go. Next, he hanged a curtain rod and some drapery which will keep out the neighbor's porch light at night (that's the one thing Robert will appreciate most). He also installed a wand showerhead for Robert. I put together a new floor lamp, but was having trouble with the shade, so he fixed that, too!

I was so depressed with all the boxes all around. My friend, Debbie, had helped me lighten it up a bit, but I still had boxes everywhere. This place felt cramped and heavy. Now there is plenty of room for a wheelchair to get around and it feels so much lighter!

The new bed is in place and should be just fine. The bidet is yet to be installed, as we will need to bring in an electrician to install a special kind of outlet for it. I will need to get a portable ramp, I guess, for the threshold and stoop. The owner is worried about liability, so her husband won't do these things. After the new outlet is installed he will install the bidet for me, though.

Things are almost ready for Robert. And I'm feeling better about my choice of abodes.

RSL's better half

21st June 2009, 10:17 AM

Since I'm not allowed to edit my posts here, I guess I need to post a "correction."

". . . helped me move Robert's desk out to the dining area (which will not now be Robert's office space). . . "

RSL's better half

23rd June 2009, 07:29 PM

Tomorrow, Robert's g-tube will finally be removed. He hasn't needed it since late October, but each pcp has said "let's leave it in - just in case . . ." Yikes. So now he's about to go home and they decided it would be Ok.

I had a bit of a breakdown yesterday. For some reason, I could not use my debit card to purchasse some sheets for the new bed (even though I had just used it to pay a few bills over the phone). Then, as I drove through El Pollo Loco, my driver's side window would not roll up (power windows). I kept trying it the entire trip home (about a half mile). It was just dead. I've never had power windows before, and I envisioned it costing several hundred dollars to fix, which I just don't have. When I got inside the condo I sank into my recliner and sobbed! I asked God just how much stress He thinks I can handle. Almost 11 months of it is too much to ask of me.

After about 6 hours sleep and an invigorating shower I felt better. Of course, my drive to work in the cool, early morning, wet hair blowing in the breeze (I didn't give myself enough time to dry it), dampened my mood again. After I got to work one of my coworkers came in and asked if I knew my window was down. I managed to hold it together as I told her what had happened.

A couple hours later she said she mentioned my dilema to her brother who runs an auto parts store, who recommended a mechanic and said he could get me the needed part for 70% off the regular price, and that I should have the mechanic call him. I went to the mechanic, who called the parts man, and I ended up spending a total of $138 for the motor for my window.

One more week and Robert will be home. He may not be able to do much in situations like this, but he can at least hold me when I cry. I miss that sooo much.

RSL's better half

25th June 2009, 10:08 PM

Robert's feeding tube, which he hasn't needed since October, was removed yesterday. I think I'll let him tell you about it this weekend. Suffice to say, he came through it just fine.

I got a bit of pt training yesterday. Niels had me "spotting" Robert while he walked. He showed me how to "plant" myself if Robert starts to falter. If I can be his wall to lean on he should be able to right himself in short time.

Poor Niels not only played physical therapist and teacher, but he also had to be a bit of a marriage counselor. Robert is becoming increasingly frustrated - with himself and everyone else.

I know we'll get through all this. We both know we love each other. We both understand there's going to be a lot of stress ahead of us. So if we yell, it'll blow over quickly . . . I hope!

I have Friday - Monday to get the bidet installed, install a ramp, and get some stuff up off the bedroom floor and into the closet. I also need to get a hold of the HMO and find out what we'll get out of them and how soon. Wish me luck!

RSL's better half

29th June 2009, 07:57 PM

Well, it's 6:30 pm the night before my husband comes home and I am the only one who has completed the job of getting ready. I have cleared the bedroom enough that we will be able to use the sling lift that was delivered today, though I'm not sure we need it. We also got a bedside commode which is supposed to be able to also fit over a toilet. And that's it, folks!

There's still no motorized wheelchair, no poles for Robert to use to get out of bed or on and off the toilet, no bidet. Oh yeah! The company that brought the commode and lift also brought us a "heavy duty walker." I refused it because Robert needs A HEMI WALKER! How the hell is he gonna use something that requires two hands?

The wonderful thing that happened today is that an in-home therapist called me to set up an appointment to evaluate Robert tomorrow!!! His name is Roger, and I am hopeful he will be able to give Robert some fine-tuning.

Robert's best buddy, John, is coming over tomorrow night to put the desktop together for us. Then Robert can begin working on his presentation for TAM.

Somewhere in the first few days I want to take Robert to this place that loans durable medical equipment for free. They just ask that you return it when you no longer need it. Here's a link to their website:

http://www.cas1.org/

RSL's better half

2nd July 2009, 09:59 AM

My hubby has been home for two days and I am very grateful. I layed in bed this morning just watching him sleep. We both have had some frustrating events to work through, but we've made it with each other's help. I'm hovering, I know it, he knows it, but I can't seem to stop. He has tried to do things himself because he knows I'm tired, but there's only so much he can do just now.

We left the nursing facility with one of their wheelchairs because Robert's motorized wheelchair had not arrived . . . and still hasn't! Time to let the HMO know I'm still here, I guess. We finally got the hemi walker yesterday, which will help him tremendously to get around the house.

We've met Roger, his in-home therapist, and he's a great guy. He did an evaluation on Tuesday and gave Robert a session yesterday. He's was extremely upset that we still didn't have the hemi walker and may have been intrumental in making sure it finally got delivered. He only gets a few sessions, so I need to speak with the HMO about outpatient therapy as well.

We were visited by a nurse as well. George made sure we knew what medications Robert is taking and when, checked our stock (which is only enough for about 10 more days) and made a note to contact Robert's pcp to get prescriptions, gave us some great information, took notes on Robert's health history, gave us a number to call if we need anything during the transition, told us we'd likely get a couple more visits from a nurse, though it may or may not be him, and then left.

Robert's buddy, John, put our pc together, but I still have to call the cable company to get internet hooked up.

So now I need to go get Robert out of bed, cleaned up and dressed, give him his morning pills, feed us both, call the HMO and do some screaming, call the doctor to see if we can get his prescriptions faxed to our pharmacy, call the cable company, pack Robert into the van and head over to the Convalescent Aid Society to see what we can pick up, come home and fix lunch and . . . God knows what else.

More later . . .

RSL's better half

5th July 2009, 06:20 PM

I was hoping not to have to do this. I need to ask for some more financial help. If you can help, please pm me.

I need to purchase some wheelchair ramps online. To get what we need it will cost around $500. I am taking 3 weeks off with no pay, and Social Security Disability still has not started. This can be considered a loan if you can wait till our first SSD check to get paid back.

Thanks in advance.

RSL's better half

6th July 2009, 05:34 PM

The expense of the ramps has been covered. Thank you, JREF family. Thank you.

RSL's better half

14th July 2009, 05:47 PM

Umm - about the ramps . . . I turned down a forumite's kind offer because I thought I had another solution. Well, I was wrong. As it turns out, because of the angles leading up to our door, we will need to have a "ramp system" built. We have a walkway, a 2" step up to the slab porch, then the route takes a quick left turn with an immediate right to get over the door threshold, and there is a gate leading to our patio directly across from the door, making a very small area to turn round in. Even though Robert's new power wheelchair can corner really well, the angles are still too sharp.

I had the president of a reputable, local ramp system company taking measurements and pictures of our problematic area this morning. His engineers will come up with a design and cost and he will email it all to me. We talked at great length about what he thought would work and I asked questions until I could visualize what he was talking about, and I think it is the best solution. If I agree to his proposal, his crew can have it installed before week's end.

I asked him for a rough estimate, and he said it would cost around $2200. That's the bad news. The good news is that we can rent it instead, for a monthly fee, and if we decide to purchase it later, 75% of our rental payments will go towards the total cost. I would be interested in some opinions on this.

On another topic:

TAM 7 was absolutely fantastic! It's true that I did not attend most of the presentations and panels, but Janie really enjoyed sitting through all of it with Robert. I'm talking about the support and love shown to Robert & me, and to Beeg Seestor, Janie. The ovation Robert received when he came out to address the convention brought me to tears. As he struggled to make the many points he wanted to make as quickly as he could, you could've heard a pin drop. He kept backing away from the mic, and I'm sure some of the attendees had to strain to hear him. He had to be told a few times to "wrap it up" so lunch could be served as contracted, so he didn't get to finish, but I'm sure he'll find a way to say everything he wanted to say here on the Forum.

Thank you to those who wore their "Stop Sylvia" merchandise in a show of support. A wonderful upper-arm painted-on tattoo of the SSB logo was also appreciated.

The Citizen Skeptic Award he received on Saturday will have a place of honor in our home. Again, the ovation he received was incredible. Thank you, JREF, Forumites, and other attendees of the conference.

I have decided that from now on we will FLY to Las Vegas for TAM. Many of you know about the mysterious car trouble we had on the way to TAM with our used van, but are not aware that we had more trouble on the way home. We ended up staying overnight at Whiskey Pete's in Primm (formerly known as "Stateline"). Take my advice and never stay there. Thanks to Beeg Seestor, a mobile mechanic from Vegas came out and explained the mystery and told us what we needed to do when it would inevitably happened again on our way home. Apparently, Dodge vans are well known to have trouble with their fuel pumps as miles tack on. He said it happens in extreme heat (it was 114 in bumper-to-bumper traffic Sunday afternoon). He told us that when it happened again, and it would, put the car in neutral, turn the ignition off and then on again, and it should start back up . . . until it stalled out again or we got into less than 100 degree temps again! It did, we did, and the problem stopped when we reached less than 100 degree temps as we got closer to home. We will replace the fuel pump as soon as we can, but I will never drive in that much heat ever again.

One more thing:

It is quite evident to me that Robert is not yet able to remain home alone while I work. I am going to ask for more time on FMLA, with no pay, while I figure out how to care for him until he is able to care for himself. I have some forms sent by the state of California which should help us get some daytime help. Keep you fingers crossed for us - oops - lost myself there, sorry.

So, if you thought the Lancaster saga had ended, you were wrong. We have only entered a new chapter. I've said it before and I'll say it again: nothing is ever simple when it comes to Robert S. Lancaster! However, the book is never dull.

My love to you all.
Susan

RSL's better half

22nd July 2009, 11:25 PM

We have ramps!

http://forums.randi.org/imagehosting/thum_172944a67e9e8791a3.jpg (http://forums.randi.org/vbimghost.php?do=displayimg&imgid=17028)
This was as they were being built.

http://forums.randi.org/imagehosting/thum_172944a67ea628c3f6.jpg (http://forums.randi.org/vbimghost.php?do=displayimg&imgid=17029)
This is the finished product from our door.

http://forums.randi.org/imagehosting/thum_172944a67ead54854b.jpg (http://forums.randi.org/vbimghost.php?do=displayimg&imgid=17030)
This shows from our walkway to door.

I was too busy watching Robert go down to snap any shots while he was on the ramps, but here are some of him around the ramps after he went down on his new motorized Hoveround chair.

http://forums.randi.org/imagehosting/thum_172944a67efc089072.jpg (http://forums.randi.org/vbimghost.php?do=displayimg&imgid=17031)

http://forums.randi.org/imagehosting/thum_172944a67f2ae5361b.jpg (http://forums.randi.org/vbimghost.php?do=displayimg&imgid=17032)

http://forums.randi.org/imagehosting/thum_172944a67f38a44d40.jpg (http://forums.randi.org/vbimghost.php?do=displayimg&imgid=17033)

RSL's better half

4th August 2009, 10:24 AM

I am grateful to the entire JREF family for the emotional support they have given you, Susan and the entire Lancaster family. And the financial support has been awesome. I don’t know how Susan would have gotten by without all of their help. Because of them I have learned a great deal about love and friendship this last year and proudly consider myself a part of the JREF family, too.

Yeah. What Beeg Seestor said. And she has no idea the total extent of help we have received from people we either have never met or have only met a few times. I can't say enough how grateful I am for all your moral and financial support.

Shout out to Gilmar for not only being there emotionally and financially, but physically as well! He was instrumental in getting our new home ready for Robert's homecomming - and I really put him to work! Kittynh, Geek Goddess, Elaine, Jeff, Cleon, Loon, sgf8, Mr. Randi - all made sure my much needed cruise vacation was just what I needed. Everybody in the JREF chat room has been there to root me on when I'm down or give me virtual hugs whenever needed. All of you who post in the RSL in Hospital thread - all of you who have sent me PMs - those of you who helped when Robert's url was hijacked (El Spectre, and everyone involved in the Google-bombing) - hcmom, who even came to help me try to whip Robert into shape and prepare him for rehab - Borealys for the insightful information she has furnished me on many occassions - Cactus Wren for the most recent outstanding show of support - forgive me if I've forgotten anyone, because there are so many I wish to recognize, including everyone who donated financially from the JREF Forums and elsewhere. And special thanks to Doubting Stephen and Terry for the laptop, which was my lifeline for most of the past year, even though it was given to Robert last TAM.

I have to say that, after seeing what Janie did for us during the TAM trip, I know she'd be here for me and for Robert much more if she lived closer to us. She really stepped up to the plate during TAM and hit a homerun. She relieved me of some of the physical care-giving duties, gave me a couple much needed massages, and handled the car situation so we didn't really have to think about it. The best Beeg Seestor ever.

RSLancastr

4th August 2009, 11:02 PM

One year ago at just about this time, our lives took a wildly different turn.

Robert has unfinished business here. Of that I have no doubt. With time, he will again answer his calling. It will grow and be bigger and better than anyone imagined, and will be a very good thing.

I will soon complain that his computer takes him away from me. But then I'll smile, because it will indeed be "a very good thing." Stand by. More to come.

I love you, Robert.

RSL's better half

5th August 2009, 06:56 AM

oops . . . I did it again.

That was my post, not Robert's. But I think you can tell.

RSL's better half

6th August 2009, 09:44 AM

What does Robert do now that he is at home? And how are things generally?

Well . . . he stays in bed until I get home from work. I'm working 6-hour days for a while, working 6:30 am to 1 pm (my boss insists I take a 1/2 hour break). Sometimes he just sleeps, sometimes he asks for the laptop before I leave. I take his bp and give him his meds, breakfast in bed. When I get home, I usually help him get dressed and into the power wheelchair. He goes out to the desktop computer and waits for lunch. After lunch, if I have nothing planned - we aren't going somewhere - he usually wants to go back to bed. I fight it, but he wins out.

I have to help him stand and transfer still. He can help with dressing and bathing, but I do the bulk of the work. It has taken a toll on my back. The power chair and ramps, however, have been a Godsend. And he seems to relish any independence he can get, like wheeling himself outside, down the ramps and into the van.

We have the referral for an outpatient therapy consult. I believe that once we have a schedule - appointments to meet - he will begin to progress a lot faster. Because we have the referral, the in-home therapy has stopped. I'll let you know more about outpatient therapy when I know.

Last evening, my plan was that we'd go out to dinner at my favorite place and when we got back home we'd go for a "walk" (he in his chair, of course). After dinner, in the parking lot of the restaurant, I took a header. I had leftovers in one hand and my purse in the other, so when I started going down I could not put my hands out to break the fall, so my head bounced on the pavement. I guess I have a hard head (d'ya think?), because it didn't knock me out. Sure scared the crap out of me, though. Some passersby called the paramedics and would not allow me to move. Robert felt completely helpless. As I went down I thought, "Oh ****. What's gonna happen to Robert?"

Paramedics were there in just a few minutes (firehouse is just a couple blocks away). They checked me out to make sure there was nothing more wrong with me than the huge bump above my eye. One of them, after finding out we live just down the street from the fire station, offered to drive the van back to our house and did so, with fire truck and paramedic unit following.

It was all over in a few minutes, but boy do I have a beaut of a bump and black eye this morning! Yes, I used cold packs. It was a helluva bounce on the blacktop! I'll call my doctor this morning and see if I can get in to see her today.

So, rj - that's how things are "generally." Not what you wanted to hear, I know. Oh well.

RSLancastr

9th August 2009, 01:30 PM

Hello all! Yes, this is Robert, not Susan. I just spent some time reading through this whole thread, and, though I didn't think it possible, I now have an even greater appreciation of what an incredible wife I have. or, more accurately, a better appreciation for what I have put her through over the past year. I continue to put her through difficult times, but they are different than those I put her through earlier.

I love you, Susan!!!

RSL's better half

15th August 2009, 11:24 AM

Well, we finally got the referral for a "consult" with outpatient physical therapy. Firstly, it was a dump in a strip mall. Secondly, the therapist who was supposed to be evaluating him had a broken ankle and could not stand him up or see how well he could walk. And, her personality did not mesh with Robert's at all. All she did was figure out what caused him pain, and when he snapped at her through his pain she said she was "thin-skinned" and would walk away from him if he snapped or yelled at her. This will not do.

I also discovered that I will have to pay an office visit copay for every session. We will only be given 60 consecutive days by the insurance company. If I want him to go three times a week, at $30/visit it'll cost me $90/week! Well if I have to pay that kind of money I want a better quality rehab! I'm working with the insurance company to allow us to change our HMO. We need one that is closer to home. And, there are several rehab places near our home - one being the place the first doctor and caseworker wanted to send him to when I got him to my "rehab of choice" the first time. I didn't like their inpatient facilitities, but there's nothing wrong with the outpatient one.

So, pride aside. You all know what our financial situation is. Robert still has no income. We are trying to survive on one third of what we were bringing home before the stroke. I got us into a smaller place which costs $700/month less than the house we had. But my salary pays the rent, utilities and groceries, car insurance and fuel, and very small payments on the loan for the ramps. Also, until I can get Robert on Medicare, I have to pay a large part of my medical premiums, which will increase from almost $400/month to over $600/month effective October 1st.

If you feel moved to do so, we could sure use some help to pay for the PT sessions when they start. I'm hoping for 24 sessions. Please pm me.

RSLancastr

17th August 2009, 09:56 PM

I have managed to get Robert's doctor and HMO changed to one closer to home. I cancelled all appointments associated with the old doctor/HMO, and made an appointment with the new doctor. The insurance company said I could make the appointment immediately and tell the new office to call them for approval. So, instead of seeing the old doctor next Monday we will be seeing the new one on that day. Let me tell you, this was no easy feat. The insurance company did not want to take him out of the situation of "ongoing treatment." I convinced them that his doctor isn't really in the process of anything, and that both doctor and HMO are too far away from home.

So, let's hope this doctor and HMO will refer Robert to a more professional physical therapy center. I'll keep you posted.

RSL's better half

18th August 2009, 06:57 AM

Oh no. I did it again.

RSL's better half

19th August 2009, 06:25 PM

Yesterday, Robert had his first evaluation for Social Security Disability. It was a mental, or psychological, evaluation. The psychiatrist would not allow me in the room during the evaluation, and he kept Robert in the exam room for more than an hour and a half. It was agonizing having to wait outside during such an important evaluation. The one plus I had was that the place we had to go to was in the same office as Robert's first primary doctor and pulminologist when he was in the very first hospital. Robert doesn't remember them, but I knew them immediately and they recognized me. The pcp, Sudan, got to see Robert, but the pulminologist did not. Sudan was the one who insisted Robert lose the beard, and he made a comment about Robert's once again full beard.

As all the offices surrounding the waiting room started closing down, I could not quell my anxiety. Was this extra long evaluation a good sign or a bad one? Soon after the last office closed the blinds on the reception window, Dr. Shore, the psychiatrist, came out to bring me in. He could not tell us much, as he had not calculated the results of all the tests he put Robert through. Also, his client is Social Security, not us. However, I asked where he thought Robert is as far as cognition. He suggested we ask a nerologist or occupational therapist (I think he meant slp, Borealys), but he did say that Robert scored well above average in many parts of the testing. For example, he gave Robert a series of numbers to remember, and Robert was able to repeat them back to him, even in reverse! He said it's extremely unusual that someone score virtually flawless in this area. He said Robert does have some deficiencies, and they are what I expected - inability to focus; attention is easily diverted; some short term memory deficiencies. But Robert is still extremely intelligent.

On another note:

As you may recall, Robert was in a regular hospital at first, almost 6 weeks in CCU then he moved through the varying levels of care until he went to the first rehab (my rehab-of-choice) for what turned out to be only 10 days. He then moved on to the subacute or "nursing home" that was 50 miles away from home and was there for three months before going back to the other rehab, only to be "sent down" again to another subacute, and eventually back to the place 50 miles away for another 3 months.

Robert has started a thread about his first stay at that wonderful subacute nursing home. He formed some wonderful friendships during his stay there. It's worth a read:

http://forums.randi.org/showthread.php?t=151418

RSL's better half

25th August 2009, 07:51 PM

Last Friday Robert had his second Social Security Disability appointment - this time with a neurologist. Before we left the office, she made sure we understood that her job was to get SSD to understand that Robert NEEDS the disability insurance, and she assured us that it was not far off.

Yesterday (Monday), we met Robert's new PCP for the first time. The doctor is older (with died black hair or a rug), but what a great "manner" about him! I was quite impressed with his thoroughness and dedication to the patient. He said he'd order occupational therapy immediately, and we should hear from the HMO about it within a week. He wants a neurologist to decide if more physical therapy is in order, and he's referring us to Dr. Kundi, who was Robert's first neurologist when he was in the first hospital. I had a beef with Kundi in the beginning, you may remember, but we ended up having a great realtionship and I'm looking forward to seeing him again. I think he will be amazed with Robert's progress. Particularly with the fact that Robert has been walking with a walker. Kundi thought he'd never walk. I'm sure he'll order more "practice" (physical therapy) for Robert. Dr. Betts (new PCP) agrees that an SLP (like Borealys) is in order, at least for an evaluation.

And the best thing that has come about in the last several days happened yesterday after the doctor appointment. Robert wrote-up a new article for the SSB website! I didn't think he was ready. I was wrong - again! It's perfect. Not sure when it will go up, as his computer which has all the needed software is still down. But as for his writing skills? Folks, they are still intact! Wait tiill you read it!

I'm glad I wrote this. I've been concentrating on the negatives and this just reminded me of the wonderful positives from the last several days.

RSLancastr

26th August 2009, 06:19 PM

Robert wrote-up a new article for the SSB website! I didn't think he was ready. I was wrong - again! It's perfect. Not sure when it will go up, as his computer which has all the needed software is still down. But as for his writing skills? Folks, they are still intact! Wait tiill you read it!

Well, it will be old news to most of the people here. it is a Reader's Digest version of the stroke, and what has happened since, as an explanation for why the site has been static for the past year.

RSL's better half

28th August 2009, 10:13 AM

My poor "baby" is sweltering in the heat yesterday and today. A few blocks in our neighborhood have been without electricity since between 10 and 10:30 yesterday morning. Temps have finally exceeded the 100F mark where we live (usually starts early Aug), and we get a power outage. Edison trucks are all over the place, digging holes and putting up tarp shelters over the workers. Our land phone is also not working, so poor Robert is really stranded. At least my son is there part of the day to suffer with him.

The job I had applied for and then it was closed for a couple months was reopened last week. I submitted my application, but withdrew it before the test yesterday. I am so overwhelmed now with everything else going on, I just can't take on learning a new job. Besides, I want to find a way to retire in the next year or two, and that wouldn't be fair to my employer. The extra money would have been great, but I think the stress would have sent me over the top. Robert basically said no amount of money was worth losing my sanity for.

RSLancastr

29th August 2009, 01:06 PM

My poor "baby" is sweltering in the heat yesterday and today.

Waah!!!

RSL's better half

2nd September 2009, 09:34 PM

This Friday Robert will again be evaluated for therapy. This time it's occupational. With any luck, he'll get more practice with the daily living things - getting from bed to chair, chair to toilet or shower, doing things for himself. He really needs the self confidence.

We now have the referral for the neurologist so I'll call and make an appointment tomorrow. It'll be nice to see Kundi again. Kinda like old friends, ya know? He helped get Robert further along than anyone, including himself, thought he'd get.

I also need to call my insurance company and get Robert into their program for depression. Who knew they had a whole "program" for that?

I'm taking a 2-hr lunch now so I can come home and fix Robert a decent lunch and touch bases with him in the middle of the day. The last couple of days he's gotten up with me when I'm getting ready to go to work. Yesterday I helped him get back to bed after lunch before I went back to work. Today, he decided to stay up in his recliner. My son helped him a bit - set him up with a Simpsons dvd. So Robert was "up" all day long! As soon as I walked through the door at 5 pm, I could see he was tired. After a trip back to the commode in the bedroom, I let him go back to bed for a nap. A couple hours later I brought him dinner and turned on Jeopardy for him. He has probably gone back to sleep by now. I better go turn off the tv.

RSL's better half

5th September 2009, 10:03 AM

We saw the occupational therapist. Kenneth. Nice fella, clean, professional place. He politely listened to me spout off what we're (I'm) hoping he'll accomplish with Robert (getting him to be able to fend for himself during the day when I'm not home), then set about his evaluation. I watched carefully and intently.

There was a methodical way about him. Everything he did with Robert seemed to lead him to the next. To me, he seemed to learn a great deal with each step he took. He had the look a doctor gets when evaluating a patient - sometimes it's like "Aha!" and sometimes it's like "Hmm." By the end of the evaluation, he decided the first thing Robert needs is more strength in his right (good) side. That's what he will work on first.

Robert surprised him by taking first the 4 pound weight and lifting it with ease . . . then the 5 pound . . . then the 7 pound. His right arm is very strong. Kenneth went around the back of the wheelchair and handed Robert one end of a stretchy cord with handles on it. He pressed his end of the cord against the wheelchair and asked Robert to use the other end to stretch his arm out in front of him. They performed this manuever to the count of 12, and he had Robert rest. Then he tightened the tension and had him do 12 more stretches, and rest. Again he tightened the tension and had him do another 12. Robert performed beautifully.

Kenneth surprised us, too. He sat at Robert's left side and laid Robert's dead-weight arm on his. Then he asked Robert to do various lifts. When he asked Robert to bring his hand to his mouth, Robert did it! Robert said Kenneth was taking away some of the weight, which allowed Robert to actually bend the elbow and move the arm a bit. They did this to a count of 12 as well.

All in all, we were quite pleased. Kenneth said he'd contact our new HMO and recommend the therapy (this approval was only for evaluation). He said it should only be 2-3 business days before we hear the HMO's decision, and that this HMO is actually pretty good about all this. The new primary doctor said the same thing. We never heard comments like this when we were dealing with the old HMO! Let's hope they are right and I can stop fighting for Robert's health care!

RSL's better half

13th September 2009, 12:00 PM

Well, it's been over a week and still no referral. Looks like I have to begin the fight again.

There has been a significant improvement of late, though. I got up the other morning, got ready for work, got Robert dressed and in his chair, got him out to his desk, gave him breakfast and his meds, then headed off to work. When I came home at lunch, my son was at the desk. Robert had gone to bed . . . the point here is that Robert got out of the chair and into his bed all by himself! Not only that, but he had undressed himself as well! This is significant because it's the first time he's shown any real independence. He's done this a few times now, as well as trying to get himself dressed. Pants are a bit of a problem, but he's still trying. He can get them off, but getting them on with one hand and a leg he can't bend on his own is difficult. He's finding ways to do things, though, so I don't think it'll be long that he's fending for himself.

RSL's better half

16th September 2009, 06:36 PM

I know I've told you before that I "broke down" over something or other during the past year. Forget it. Nothing compares with the breakdown I had today. I lost it. I screamed. I cried and cried and screamed some more. And I'm crying again as I type this. I am so ashamed of myself . . . not for crying, but for losing it so totally.

I came home for lunch, got Robert out of bed and into his chair and went out of the room. Robert tried to manuever the chair out the door as he's done many, many times. This time he got caught-up on the door jam and, in an effort to get out of the situation, he slammed the chair into the washer and dryer hard enough to dent them both. I worsened the situation trying to help, and I rammed the chair into the hall cupboards, taking chunks out of the bottom cupboard. When he got caught on the door jam the chair swiveled so that he was facing sideways while the base of the chair pointed forward. Between the two of us we got him so stuck we just could not budge it any more.

I never even thought to look for the chair's manual. Heck, I didn't take the time to think at all. I just started screaming. I tried shoving the seat, trying to get it to swivel back. The whole time I just kept screaming. All I could do was think about how I had told everyone at work how great Robert did yesterday during his OT session and how I finally had something to give me positive feelings again. It seems like whenever I start looking at things positively, something happens to knock me back down into "negative world" again! I thought about how NOTHING is easy, nor will it be for a very long time, if ever. I thought about the damage done in the hallway (including the washer and dryer)
and chalked it up with other damage to this place wheelchairs have caused, forcing me to the realization that no matter how clean the place is when we leave it we won't get any of the deposit back. The owners may end up charging us more. How on earth will we be able to move out of here?

I called the wheelchair company. I was sobbing. The guy tried so hard to come up with a solution for me, but the chair would not budge. He suggested I call 911. I didn't want to, but finally had to. Three strong firemen muscled the chair out of the hall, and then found the lever the guy on the phone was trying to tell me would swivel the chair back in place. I felt like such an a-word. When they left, I kept bursting into tears, remembering my actions earlier.

We have no money. We have no assets. No idea how much disability he'll get or when. And I NEED to quit work. I can take early retirement, but it won't be much - about a third of my salary. If I can't get him on Medicare I will have to continue on the insurance plan I now have that will cost me almost $600 a month starting 10/1. But I can't continue working and taking care of Robert. I just can't.

I called the "behavioral health" hotline number on our medical cards. I don't believe in psychology. Most of the bull I've heard from psychologists sounds more like common sense . . . or crap. I apologize to any psychologists reading this. This has just been my experience with people in the field. But I know I need help. I need more than this outlet. I need more than the sympathetic ear I always get from family and friends. I have to find a way to cope with what has happened to us. And I do mean US.

To top off my shame, while I waited for a call back from a caseworker, Robert tells me there have been times when he thought I was going to hit him. I told him that at no time have I ever wanted to hurt him. Then, after he went back to bed, I remembered a time when I did hit him. When he first started confabulating, he was acting really crazy and I slapped his arm and sternly told him to knock it off! It got his attention, he stopped behaving so wildly, . . . and a seed was planted. Not for one moment during my tirade today did I ever consider hitting him - it never even crossed my mind. Yet he was afraid I might.

All I can do is sob! I feel so useless and idiotic. But there it is. My best is just not good enough. Somehow, I have to hold it together until Monday morning when I go see a counselor. I'm taking Robert with me. He's the only eye witness to what happened to me today. I didn't go back to work today, but I have to go back tomorrow, and then Friday. I'm no good to my employer, I'm no good to my husband, I'm not even any good to me.

Now THIS is a self-pitying rant.

RSLancastr

17th September 2009, 06:57 AM

I'm no good to my employer, I'm no good to my husband, I'm not even any good to me.

Now THIS is a self-pitying rant.

Nice rant, babe!

As for your being "no good to me," that is just silly. For one thing, if it weren't for you, I would still be jammed in the hallway. It was you who made the call to 911 - I could not have even gotten to the phone. And that's just the latest thing you've been "good to me" for. I just wish I was good for you for something - anything. words fail me when I try to describe how useless I have felt for months now. If the events of yesterday had happened before the stroke, I could have at least comforted you. If the doctor who years ago told me I was a stroke waiting to happen had said "If you have a stroke, you will never be able to wrap your love up in your arms again", I would have taken the warning to heart. Seeing your pain yesterday, and being unable to do anything about it, was devastating.

I love you far more than I am capable of expressing here, Susan. You are my reason for living. Never again think that you are "no good to me", no matter what happens.

As for my being afraid that you would hit me, it was not fear that you wanted to hurt me. And, as I told you last night, I don't even recall the incident you describe where you hit me, so that is not it either. It's just that, when you get so anry and frustrated that you hit things (as you hit the washer/dryer yesterday), I wonder if you might, out of frustration, hit me like you would any inanimate object within swinging distance. And, if that ever happens, it will not be the end of the world. we will deal with it, like we have dealt with many setbacks over the past year.

I love you so much, booful.

-me

RSL's better half

23rd September 2009, 08:54 PM

Well, my experience with folks in the field of psychology has not change. I opened the door of the guy's office and found a frail-looking older man in ripped jeans and wrinkled knit shirt, looking much the part of a homeless person, sitting in a simple office-type chair surrounded by mounds of stacked mail. I kid you not. I don't know why I didn't turn around and leave right then. Each stack of mail was stacked very neat and tidy - but there were hundreds of stacks - well maybe I exaggerate - maybe it was only a hundred stacks. It was a very small office. The best I got out of the half hour or so I stayed was a phone number for a stroke support group which he got from a comb-bound book of resources . . . FOR THE HOMELESS!!!! I never really got into why I was there, other than to give him a synopsis, of sorts, of the past year up to my melt-down last Wednesday. He seemed to enjoy listening to himself talk. I have not yet tried to call the number he gave me for the support group, but will not be surprised if it's no longer in service.

That was Monday. Tuesday we had another OT session with Kenneth. He worked Robert out with exercises, then had him standing at the parallel bars. He's trying to get him stronger and able to stand longer. The goal is to get Robert to be able to transfer himself frm bed to chair to toilet, etc. Today, we saw Dr. Kundi, the neurologist Robert had back at the first hospital. It only took a couple hints to jog Kundi's memory of us both. Kundi is going to order an MRI for Robert, then we'll go back to see him in about 6 weeks.

When we came home, I discovered that the automatic door on the van is broken. I don't know how I'll pay for it, but it has to be fixed this weekend. We'll give it another try tomorrow as we have another appointment with Kenneth. But it took quite a while for me to force it work today so we could get Robert out of the van. We may have to cancel tomorrow.

So far for the month of September I've shelled out for 9 doctor/therapist visits at $30 a pop. I asked before, I'll ask again: If you feel moved to help pay for a therapy session ($30), I now have a paypal account. PM me. Thanks in advance.

Also, if there is a tax attorney out there who can help me with the games the IRS and State Franchise Tax Board like to play, pm me. I don't know what part of "the man had a massive stroke . . . is no longer working . . . has NO assets" they don't understand.

How much more am I supposed to deal with? I am so tired.

RSL's better half

27th September 2009, 10:40 AM

Another bright spot in the middle of all the darkness:

The other day, Robert and I tag-teamed on the phone. I hate getting on the phone for business dealings. We needed to work out a payment plan with the electric company and talk to the cell-phone company about his missing phone, plus we called Social Security to see if we could find out what the status is on his case. Robert called each place, got the other person on our side, then I was "the closer." I worked out the details for payments, and I was the one the Social Security lady had to tell that she can't tell us any more than "a notification letter has been mailed requesting more information." The electric company is sending us a form to apply for help with our payments. The cell-phone company reversed charges we did not make (someone found Robert's phone that went missing at the nursing home) and issued a new phone - which UPS tried to deliver Friday, but nobody answered our door to sign for it so they'll try again Monday.

The bright spot here is that Robert was not confused at all when making the calls and we were the great "team" we used to be b.s. (before stroke). Having him make the calls helped me to finally get them done. And he's so good at talking to people. I am, initially, intimidated, then too emotional. He set things up to be finalized, and I finalized them (well, sorta). This is how we will handle things from now on. It worked great!

RSLancastr

28th September 2009, 07:19 AM

Go team!!

RSL's better half

30th September 2009, 08:00 PM

Monday: I took the van back to the place where I bought it (clear on the opposite side of LA from us in a town called Van Nuys) because the automatic door (where the ramp comes out) was messed up. I really thought it would be an easy fix, because I could tell that the track the teeth of the mechanism were supposed to catch on was not stationary - I thought they'd just replace the track. I got there, and was told the fee for a "diagnostic" was $112. I knew it was going to come out of the money I had for rent, but I had no other money and I had to get it fixed.

About an hour or so later, the receptionist came to tell me the problem was bigger than I thought, and I needed a part that was like "the brains" of the mechanism. I said "It's going to be expensive, isn't it?" She nodded apologetically. I cried. Then I called Robert and told him I was going to ask that they just make the door so that it can be opened and closed manually. Robert's sister, Trish, bought us a portable ramp Saturday and we had already used it in the van. I explained this to the receptionist and asked if it was possible to do. A mechanic came in and she asked him, as he was the one who had "diagnosed" our van. He said it was possible, but warned me that I didn't want to do that. Tearfully, I told both of them I'd appreciate it becuase I couldn't even really afford the diagnostic fee and that it was coming out of my rent money. Then I walked away and cried.

The receptionist came and found me a little while later and told me the mechanic was going to try to fix the mechanism without the new part, and would not charge me for his time. All I'd have to pay for was the "diagnostic fee." Another hour later, the mechanic found me, told me he would not guarantee the work, but he got the door working for the time being at least. I hugged him and headed for home in "rush hour" traffic, singing with the radio.

I stopped by our mail box before going inside the condo, and caught a glimpse of an envelope from Social Security Disability. I walked in the condo and found Robert on the phone with our friend, Neil (the guy who married us). I sat down and opened the SSD envelope. Good news this time! Robert has been approved!!! Yay!!! I shared it with Robert, interrupting his conversation with Neil. He shared the "good news" with Neil whose response was "Hallelujah!"

But the good news wasn't done. I have a cancer policy with Aflac which pays you to have routine preventative procedures like mammogram, pap smear, or other cancer screenings. I've had the policy since 2003 and never filed a claim. I filed claims recently for each year, so also in the mail was $630 payment on those claims!!! I now have enough money for rent, and to pay the four copayments I had to pay out for this week.

But wait - there's more! I also got the calculations from my retirement system office and, though it may be financially difficult, I CAN RETIRE! I'll get a couple hundred more per month than I thought I would. I will retire by the end of this year. I may have a home-based career lined up to supplement our income, too. And we will relocate to Oregon after the first of the year, where our money will stretch a little further than it does in California (rents, for example, are half what we are now paying).

That was Monday. It made my whole week.

Yesterday Robert had another OT session. Today he went to his primary doctor. Tomorrow is another OT session. Friday he gets an MRI. A handful of folks have contributed $270 to help pay for Robert's therapy sessions, and I am very grateful. Very soon he will have PT and ST as well, and your kind donations will help tremendously.

It is a good week. :relieved:

RSLancastr

2nd October 2009, 07:06 AM

Going for the MRI today. It will be an "open" MRI, because of my size. But at least I can have one. The doc told me that, at the weight I was prior to the stroke (400 lbs), I could not have even used an open MRI. Now, at a svelte 270 lbs. or so, the pen is at least an option. I've had CT scans, but never an MRI, so this will be a new experience.

RSL's better half

2nd October 2009, 07:46 PM

Another good news day. We found out today that Robert's disability payments will be 2 1/2 times what I was "hoping" for. To say it was a pleasant surprise would be an extreme understatement. I almost fell off my chair. I thought that, with all the years he was a contractor and didn't pay into Social Security, that we'd get a minimal amount. I was hoping for a little better than minimum, but not holding my breath. What he was granted, along with my small pension, we should be able to "survive" on in Oregon. I'm still going to work from home, though.

I talked to my supervisor today and we are trying to schedule everything so that I'll have a couple weeks to train someone before retiring. He's also going to try to get the district to offer me an "incentive," since he will reduce my position to part time, saving the district a good deal of money. My "incentive" could be anything from a couple thousand bucks to adding 2 years of service to my retirement, which would increase my monthly pension payments $175/month. But with the budget the way it is, there's no guarantee of any offer whatsoever.

Robert had his MRI today. I got to look over the technician's shoulder and boy was that neat! The only thing she would tell me about it was that he sinus cavities are very clear. I tried to see the damaged part, but I didn't know what I was looking at.

Nice day. Nice week. I feel a huge weight being lifted.

RSLancastr

3rd October 2009, 03:26 PM

The technician also confirmed that I still have a brain!

RSL's better half

9th October 2009, 09:06 AM

We are settling into our new schedule. Robert has never had so many health-based appointments in his life.

We got the initial payment from disability, which gives me room to breathe. Every day brings me closer to retirement, and I can't tell you how great that is. And Robert is still slowly improving. I'm sure he doesn't think so, but I see it - particularly when he's having one of his sessions with the therapist.

Robert's eldest daughter is very excited about us moving up to her neck of the woods. She's going to help us find a place to live. I will research online (which I've already started even though it's still too early) and find maybe 10 places to rent, show them to Robert and we will choose the best 3 or 4, then Roz will check those out for us and let us know which is the best fit for us. Then we'll apply online and when we strike a deal we'll try to electronically transfer payment to the new landlord. What an age we live in!

RSLancastr

9th October 2009, 06:15 PM

I'm getting better? Glad to hear it!

RSL's better half

16th October 2009, 11:55 PM

Some of you have asked for videos of Robert's therapy sessions. I figured out how to use the camcorder part of my phone and took some yesterday. Here is a link to them:
http://www.youtube.com/user/spofca#p/u

Exciting stuff . . . :rolleyes:

Edited to correct link

RSL's better half

17th October 2009, 09:29 PM

Thanks so much for fixing the link for me! I don't know how to do this stuff.

RSL's better half

25th October 2009, 11:38 PM

I haven't posted in a while so I thought I should say something.

Every time I think I can't see the end of the tunnel, it suddenly blinds me. I've been so afraid of our financial situation since the state disability ran out and we started living on my salary alone back in February. I did everything I could to keep our expenses down - moved to a less expensive place, cut back on everything I could, pinched pennies everywhere I could - but when someone is very ill there are a lot of unexpected expenses. Honestly, I don't know what I would have done had it not been for the generosity of the JREF, it's members, particularly the Forum members, and the international community of skeptics and critical thinkers. You all kept my head above water, and I am so grateful!

It took 8 months for Social Security Disability to kick in. Thankfully, the monthly payment is enough to enable me to retire early from my job with the school district. Because I'm still so young (55) my pension estimate is about 1/3 of my salary. However, yesterday I learned something that will help increase that payment somewhat. I served in the US Navy for a little over 2 years when I was young. Yesterday, at a retirement seminar I was obligated to attend before retirement, I learned that my 2 years in the military can be added to my "service credit" years, which are used to calculate the amount of pension.

I'm hoping my district will also offer a retirement "incentive" to Confidential employees (not represented by a union) like they did this past year (when only one of several eligible employees took it - I was not yet old enough), and that I can get an amount that will help pay the extremely high premiums on my medical plan. Another thing that will have to be worked out is that because we're moving out of state we can't stay on my HMO plan. We need to be on the more expensive point-of-service (POS) plan my employer offers. Usually, employees are not allowed to change plans until open enrollment, and the new plan takes effect on October 1st. So I just missed the window. I still don't know what this will mean, but my employer knows the hardship I am under - we cannot be without coverage, and Robert is right in the middle of treatment.

Not only will the premiums be higher, but we will be paying a percentage of the medical costs instead of a fixed co-payment. If the District helps me out, though, we can handle the additional costs. We only need to pay the higher premiums until Feb, 2011, when Robert will be accepted into Medicare, and the retirement incentive offered back in June, if offered again, would be just enough to cover the difference between the HMO premium and the POS premium. (Not sure why they make you wait, but they make you wait 24 months - Social Security is counting his disability benefits with them back to Feb 09, when state disability stopped.) When he is accepted into Medicare, I can drop him from my plan and continue my plan on just me at half the premium. It'll be like getting a hefty raise!

The good news about having to go on the more expensive POS plan is that we will no longer have to deal with HMOs. HMOs are a sort of middle-man between the doctor and the insurance company. We had one HMO that overrode what Robert's doctors ordered. We don't have that problem with our newer HMO. They seem to be getting whatever the doctor orders done, and done quickly - such a difference from the old HMO! But we've only been on the new HMO a few months. I keep waiting for something to go wrong and I have to fight again! With the POS plan, I can self-refer to specialists and, if they are in the insurance company's network of providers (and I've discovered an extensive network up there in Oregon) my costs will be considerably lower than without insurance. One odd thing I noticed about the network of doctors up there is that there are very few Indian/Middle Eastern and Asian names! In California, most of our doctors are Indian/Middle Eastern and Asian! Most of Robert's doctors have been Indian immigrants: Dr. Sudan; Dr. Vermani; Dr. Kundi; and, I think Dr. Kular as well. Dr. Bai was his primary in the nursing facility, and he is Asian. Most of the names I saw in the network in Oregon were European - some German, some French, a lot of British/Irish/Scottish names. This will just seem a bit odd to me.

So, Robert is stepping up his therapy a bit and asking for help with specific things. It's good to see him stepping up and taking charge of his therapy. He gets stronger all the time. Tomorrow we see the neurologist, who will tell us what the MRI showed and whether Robert can receive more PT. Once he starts the PT, his OT will discontinue. I am so grateful we got Kenneth when we did. He's been instrumental at strengthening Robert's body so he will be better equipped for PT. We see Kenneth Tuesday and Thursday this week, and maybe next. But I fully expect Robert to get back into PT in the next 2 weeks. I'm also hoping for a little speech therapy as well, but I'm not holding my breath. He needs a little work with decision-making, and still gets a bit confused at times. He needs some help with getting his thoughts to come together better. I feel like I'm the only person who can see it, though.

Apartment hunting in Oregon is underway. Robert's eldest is there and will scout-out what I find online. Most apartment communities now take online applications, and some even take electronic fund transfers. I've given Roz a list of several apartment communities to visit, and have asked her to carry a tape measure so we can make sure the new place will accommodate Robert's wheelchair. She is a month or so away from giving birth, however, and we can't move until January at the earliest, so nothing will begin in earnest until late December, early January. I'm enjoying the research, though! Man! What we can get for half the rent we now pay!!!

I'm off to bed now. Hopefully we both sleep a little better tonight than the last few nights. Good night, JREF Forumites. Always know that I love you and am forever in your debt. You are the best of people.

RSLancastr

27th October 2009, 07:42 AM

Good night, JREF Forumites. Always know that I love you and am forever in your debt. You are the best of people.

Seconded!

RSL's better half

27th October 2009, 08:24 AM

The MRI came back great! Robert's brain has almost completely healed. Isn't that just amazing?! Only slight damage is showing . . . that's showing. For such a massive bleed, this seems to me to be close to phenominal. I wonder if allowing the blood to absorb (although they had no choice) actually helped the brain heal. I really need to do some research.

RSL's better half

31st October 2009, 11:41 AM

So, we showed up for OT on Thursday. I had told Kenneth that PT had been ordered, and on Thursday he showed me the approval the therapy center had received from our HMO. (I am almost ready to say "I love this HMO" . . . almost.) Then Kenneth informed me that the approval couldn't have been more timely, as this was Robert's 12th session (our HMO approved 12). We had thought of Kenneth requesting more, but it is no longer necessary since we got the approval for PT. I made Robert's first two appointments for PT, which will be the same time and days he had OT. We get one week off. He starts PT on 11/10. He's been approved for 12 sessions. Due to holidays, I figure his last session will be 12/22. Then, that's it, Folks! Robert will be on his own to improve . . . or not. He will have all the tools and techniques he's been taught.

We'll have Christmas, New Year's, then MOVE!

huh boy :faint:

RSL's better half

18th November 2009, 08:52 PM

Hullo.

Sorry I haven't written anything in so long. Robert should have started his final set of physical therapy sessions last week. However, the therapy place is in the basement of a medical building, and the ricketty old elevator is dead. Obviously, Robert cannot walk down the stairs, so we are stuck without a way to get down there. Once it's finally fixed, I'm going to insist on therapy 3 times a week. We're running out of time.

Roz has been looking at a couple places for us in Oregon. My first choice (picked from internet listings) was a duplex community, and the unit had a fireplace. But Roz took measurements and concluded it would not suit her dad's wheelchair. My second choice is an apartment complex that advertised "disability accessible" units. Roz was pretty sold on this one. Measurements measured-up, and the area is "very safe" (Roz' words). No fireplace for me, though. Knowing her dad's love of books, she noted that there was a bookstore about a block and a half away. Accepting her judgement, I have submitted our applications. They can't guarantee there will be an accessible unit available when we're ready to move, so I'm still looking online.

Roz is about ready to pop (baby), so she will not be looking and measuring for us for a few weeks. Perhaps by then the aprtment complex will have extended a welcome to us. We shall see.

I have an appointment with the Public Employees' Retirement System on Dec 16. On Dec 15 the ladies I work with (some for 20 years) will have a potluck celebration for me. Dec 18 is the office Christmas party. One busy week! It'll be a real party time!

I'll keep you posted.

RSL's better half

25th November 2009, 08:45 PM

A very happy, very American, traditional Thanksgiving to all my American JREF family! To the rest of the "family," happy day-like-any-other-day!

Robert had his first of the final 12 sessions of physical therapy yesterday. I'll let him talk about how it went. What's important to me is he actually set down a couple of goals for him and his therapist to accomplish. Because we are getting down to the wire of moving day, I talked to his therapist about having his sessions 3 times a week instead of 2. Because of the 4-day holiday this week (of course us school district employees got 5 days), we only got one session, and next week there will be two, but the following week there will be three as well as the following week. If we don't finish before Christmas, we'll finish right after.

My employer has started the process of transferring my medical benefits from HMO to the Point-of-Service plan, which will be effective January 1st. I thought I'd be paying a percentage of our doctor visits and prescriptions. As it turns out, as long as we use doctors in the insurance company's "network" we will pay $10 per office visit and only $5 - $15 per prescription. There is A BUNCH of doctors in Aetna's network in Oregon. We should have no problem staying in-network. It's an expensive plan in terms of monthly premium, but we only have to pay it for 13 months. When Robert goes on Medicare, it'll be like getting a huge salary increase because my premium will go down from 2-party to single. We can do this.

But we could not have been able to do this had we decided to stay in California. If we had decided to stay, I would still be working. In Oregon our rent will be cut in half. There'll be many other cost savings as well.

I am so looking forward to this new phase of our life. We'll work together on his recovery, I'll start studying medical transcribing. In a year, we'll be in more of a position to do a little traveling - locally, anyway - financially and physically. Perhaps, in a few years, we'll be able to afford visits to our international JREF family! A trip to Europe - London, Paris, Geneva. I'd love to show Ireland to Robert (I've been there twice), and I think we'd both love to see Scotland. Do we know anyone in Italy? Well, regardless, I want to see Venice and Tuscany before I die. When we visit Australia we'll need a good month, I think, to make the rounds of visits to our widely extended family there!

I dream, I know. But we just may be able to work it out if I can get a clientel built up with my transcribing.