December 25 (Christmas)

After a lot of thought and deliberation, we decided that taking Dad out of the care center for part of the day on Christmas might not be a good idea.  We had our usual Christmas morning breakfast at Ted's house, which had great food and company, but it just felt like something was missing without Mom and Dad there.  We felt bad leaving Dad in the care center, but when we talked to him about it, he'd seemed nonchalant or against it (because it would be too much of a hassle).  He does quite often say "get me out of this place" but then he realizes how difficult it would be for him to be in a normal home, with no nurses, no therapists, nobody trained to get him in and out of bed and bathed and toileted.  Honestly, we were all afraid we'd hurt him.

One ray of hope happened Christmas night, however.   I have been asking Dad the same math question since the first day I saw him in the Plentywood hospital (100 - 7).  That first time, which was approximately November 18th, he answered something off the wall like 33 1/3.  The next time  asked him was probably about a month later, and his answer was also wrong, something like 130.  Christmas night, he seemed to be very lucid and we were conversing with him well, so I asked him that question again, and after maybe 5 seconds of thought, he gave the right answer.  I said "Dad, your brain is working better!" and told him I'd been asking that same question since he first had the stroke and that he'd never got it right before.  He seemed encouraged by that, so hopefully it will help motivate him to keep trying.

He said he does enjoy therapy now, even though it's "torture" because of the pins and needles feeling in his arm and the pain in his knees.  He likes it because he is incredibly bored in his room, and he enjoys getting out to the therapy gym and watching all the people--patients, nurses, and other therapists.  

He talks a lot of going back to Plentywood, and from what I can understand, I think he is under the impression that he could live at home and then have someone (he even suggested the ambulance) drive him back and forth to Plentywood for therapy or other medical needs.  We've had to explain to him that he would not be able to live alone in any home, and that we are pretty sure he couldn't live outside a hospital until he progresses a lot more in his strength and ability to stand and at least get himself to the bathroom.

Anytime we speak of Mom, Dad still cries.  The picture of the two of them together that we have up in his room generates a lot of comments from the staff.  They say how beautiful she is and what a great pair they made.  I know Dad wishes that she could be here to help him get better, and he misses her companionship and quick decision-making.  I always think that Mom would know just what to say and do when Dad is being ornery or talking nonsense.  Jan and I are having to learn how to deal with him, but sometimes it is not easy!!  We always say "How on earth did Mom live with this guy for 43 years!?"  :)

I plan to be present sometime this week for one of Dad's therapy sessions.  I'd like to witness his progress in person and verify the staff's reports of improvement.  Thanks to everyone for their cards and their calls.  Dad has been answering his cell phone intermittently, so if you call, hopefully you'll catch him in a talkative and non-groggy mood!

Dec 16 (Meeting with Rehab staff)

The meeting with the Orem Rehab's social worker went pretty well.  We discussed a little about Dad's medical and behavioral history before the stroke.  Since Dad seems to complain about pain in nearly every part of his body whenever anyone touches him, he asked if Dad had ever been diagnosed with fibro-myalgia or any other nerve disease.  As far as we knew, no doctor had ever mentioned that to Dad.  We mentioned how he'd been evaluated for pasts strokes and had been given a clean bill of health before, and also all of his previous aches and pains (his back, neck, and knee).

We also talked about what Dad's main concerns were at present, as far as he'd told us.  We said he is definitely mostly concerned about his bowels, his hemorrhoids, his pain in his knee and neck, in that order.  Dad rarely talks about much else than his bowel situation when we visit.  I asked if they could attempt to give him food that would help his constipation, instead of using laxatives and drugs to control it.

We also met with both of the physical therapists who have been working with Dad.  They said that they have seen progress in his "transfers," which means going from wheelchair to standing, from wheelchair to bed, etc.  There has not been much notable progress at all in movement of his leg or arm.  They have been treating Dad's arm with the "shocker" as Dad calls it, and it is literally torture for him, but they feel it stimulates the muscle and could help maintain muscle tone in his arm.  Their plan is to continue with the same treatment, as it seems to be producing some results.  The book "My Stroke of Insight" was recommended to us.  It was written by a neurologist who was stricken with a stroke at age 38 and it took her 8 years to regain full rehabilitation. 

We asked Jeff, the physical therapist who Dad seems to have taken a liking to, about his fall the ohter day.  Jeff was the one who helped Dad to the toilet that day and he is clueless as to how Dad fell in the direction he did.  All we can guess is that Dad was trying to lean to grab the cord of the call button to tell them he was done, and with his balance problems, he over-corrected and fell to the side opposite the cord.

We will have another meeting with these same staff members in probably a month's time.

Dec 14 (A Fall)

To say that Dad's stay at Orem Rehab has been without mishap might have been a bit premature.  Today Dad had a fall.  Apparently his physical therapy and our encouragement to get better has caused him to believe that he is getting better a lot faster than he actually is. 

This morning, Dad asked a staff member to help him to the toilet, and once he had been moved there, asked for some privacy.  The staff member left him in the restroom by himself and Dad's overconfidence led him to think that he could get up and walk back to his bed.  Dad's story seems to conflict with what we believe he is able to do.  He told Jan that he stood up to walk and tripped over his pant leg.  We're not really sure what happened, but I think most likely he just fell over off the toilet.  He has serious issues with balance, and when he thinks he's sitting straight up straight, he's far from it.  I am very surprised the staff member left him alone, because he has not been able to sit up by himself without help or at least the support of the back of a wheelchair.

We are all becoming a little concerned that Dad has possibly had another small stroke or something because his mind seems to be making up some alternate realities lately.  We have a meeting with the care center's social worker on Wednesday, and hopefully we can also meet with the doctor and ask more questions about the fall as well as Dad's mental state.  It's a roller coaster sometimes.  I'll keep everyone informed as we go...

December 4-14 (Orem Rehab and Nursing)

Dad's first 10 days at Orem Rehab have gone off without a hitch pretty much. He likes the food, enjoys teasing the staff, and says they are taking good care of him for the most part. His room is newly updated and he's got his own door to the outside (though it is locked, most likely because of the winter season), which lets in a lot of natural light. It is a French door, with the blinds inside the 2 window panes, and the adjustment of which provides hours of entertainment for my girls when we go visit. :)

He wears t-shirts and sweat pants most of the time now so that he can be ready for PT when they come to get him. He says that he wishes they would not come get him because it's like torture, it tires him out so much. Some days are better than others. Jan and I were there for PT on Thursday, Dec 10. By the time I got there, they had had him sitting up in a wheelchair for a couple of hours already, doing reading and arm and neck therapy. At that point, they brought him over to the walking pad, which has bars on either side, and were trying to help him get up from the wheelchair. He grabs a bar and pulls with his right arm and they tell him to put all his weight on his right leg. Two physical therapists tug and pull from each side on his arms and they also use a belt they tie around his torso for supporting him. On that day, he was unable to get up from the chair. He has done so on quite a few occasions before, but that day, he was just too tired, so they tried (along with my encouragement and advice) for about 10 minutes and then decided they would let him go rest.

They replaced his catheter, which had been causing burning and pain, on Friday, November 11. He says it feels much better now. As he is still unable to get up without a lot of help, they have a brief (Depends) on him and his bowel movements occur there, but he has a lot of trouble due to the diet and the lack of moving around. We are encouraging the staff to try to control his regularity more with diet than with pills or laxatives, but we have not had much luck with that so far. All fruit juices taste very bitter and sour to him, and he is usually not very hungry because he feels full and constipated all the time. He does eat fairly well still, so we are not afraid of him being malnourished. He declines showers, to the dismay of all of us, because it is too much of a struggle and is painful for them to lift and slide and crank on him to get him into the position they need him to be in. We have talked to him about it and warned him that he will get bed sores if he is not kept clean, not to mention that he won't smell very good. The social worker at the care center said he has the right to decline showers, so there isn't much we can do but hope one of us is there when shower time comes around so we can talk Dad into it. :)

On Saturday during our visit, Brad and his family showed up. Brad was testing Dad's movement on his left side. We were all a little encouraged by the fact that some nerve impulses are actually making it to his right arm. He was able to make his hand move, ever so slightly and with no power, but still it seemed like a good thing to us. On his left leg, he is able to lift up his femur just a bit (a half inch or so) and is able to push down from the knee when his leg is raised in a bending position. I believe the physical therapy might be responsible for this improvement, so we all gave Dad the cheerleader speech that all his hard work is making progress and if he gets strong enough, he might be able to get out of there.

He has been asking a lot lately, "what is the plan? Am I going somewhere else next?" He has mentioned that he is bored in the care center, and that he might like to go back to Plentywood (I assume to live in the nursing home up there). I have been responding that if he is well enough to stand and get himself to the bathroom, that he could move into the room in my basement that he and Mom shared on their many many visits down here. As always, it is very hard to really know what truly pleases Dad, but for now, we all feel he is best kept where he is.

Dad asks every day (multiple times, usually, because he forgets sometimes) who has called or written or sent emails to us about him, so we are very thankful that everyone is so concerned and we encourage everyone to keep sending cards, etc. He especially loves to hear about what is going on back home, and would love a transcript of all the gossip that carries on each day at the Cafe! (By the way, Dad decided that keeping his cell phone at the care center was not going to work because he has a hard time reaching it, and usually can't hear very well anyway. I have the phone, but we haven't been able to find the charger, so calling the phone probably won't work for much longer.)

November 30-December 4 (Acute PT at UVRMC)

Dad was moved Monday, November 30th, into the Acute Physical Therapy wing at UVRMC. He had at least one nurse in the room 24 hours a day to make sure that he did not try to get up and walk and injure himself, as well as to attend to his every need. His therapy there consisted of a rigorous schedule. Starting after breakfast, he'd have 2 hours of continuous therapy, including physical, speech, and occupational therapy. Then a break for lunch and another 2 hours of therapy after.

We brought in a picture of Dad and Mom sitting together in the sunshine and set it across from his bed. He said it felt like Mom was watching him and mentioned that Mom's sister, Gae, had told him that Mom is watching down on him from Heaven. I know Dad would love to have Mom there to tell him to work harder and get better and tell him not to tease the nurses too much.

Dad has had a lot of problems with bowel movements during his stays at all the hospitals, but it seems to be continually getting worse. All that lying still in bed is not good for his system. That is his most common complaint, now that his neck soreness has subsided. He also complains of pain in his rear and back (from lying on them too much), and pain in his right knee which needs a knee replacement and has been bothering him for years. The odd thing is that he also complains of pain in his left shoulder and left leg, which he still cannot move.

The physical therapist's largest challenge with Dad seems to be that his mid-line orientation is way off. When they sit him up (he is not capable of sitting himself up at all), he does not realize that he isn't sitting up straight and often, when he is sitting up straight, will over-correct and actually push himself over with his strong arm. His reading abilities are still good, but the problem comes in when he consistently neglects that he has a left side and will only read the right side of the printed words. He must be reminded each time he finishes a line of text to go all the way back to the left side and start from there on the next line. Dad has not regained any motion in the left side of his body. Both the leg and the arm have zero active movement, but the left leg will shrink away reflexively when pain is inflicted on his foot or toes.

Due to his lack of progress, Medicare has told the Acute PT at UVRMC that they are no longer able to keep Dad there as a patient. Due to the intensity of PT, number of nurses, and daily presence of a doctor, etc., the care there is extremely expensive (upwards of $2000 per day). So Medicare has mandated that he be moved to a less treatment-intensive facility, which is therefore less expensive. That came as quite a shock to us, as we had been informed earlier that they would keep Dad for a short term, but a term closer to 4-6 weeks is the estimate we had heard. The goal of the Acute PT unit was to get Dad ready to be able to come home with a family member, but his progress was not enough to allow that to be a possibility.

So we had to scramble a bit to decide where he should go next, but we decided to put him into the Orem Rehab and Nursing facility which is located just a mile or so from Janice's house and is very central for all of us, so it will be very easy for us to visit him every day.

November 25-30 (UVMRC Hospital)

Dad's stay at the hospital was pretty good. He even loved the food (after we got the no chicken or turkey stipulation in). He had visitors nearly every hour. Brad went in for breakfast several times, Janice and I and Brad were there during the day and night. Ted popped in once also after he got back from Vegas.

He had daily physical therapy and occupational therapy (where they teach him how to do every day things like eat, brush his teeth, etc). He started to look better as far as his color, became able to stay awake for longer periods of time, and had pretty good conversations with us as we visited. We got many many calls from Dad's sisters and relatives and friends. We let him know about every single call and he seemed very glad to hear that everyone was concerned and pulling for him back home.

On Friday, the 27th, the doctor from the acute Physical Therapy Unit at UVRMC evaluated Dad and recommended we put him into that program at the hospital. Their program is much more rigorous and concentrated for strokes and people with nerve or other brain damage. We were excited about this and hoping we'd see some faster progress there.

November 25 (Trip to Utah)

The first thing many of the nurses told me when I came up to the hospital in Plentywood was that I should get Dad out of there and get him into a facility where they had specialized care for stroke victims. Even Dad's sisters seemed to have the same opinion. Obviously I and the rest of the siblings wanted to bring him down to Utah too, but we were afraid of broaching the subject with Dad. I mentioned it to him a couple of times and he didn't seem interested in it. In fact, I think he fell asleep on purpose the first 2 times I said anything. As we worked to organize when and where we were taking him, I think the thought slowly sunk in and Dad somehow became OK with it. He pretty much left the decision in our hands.

So, Wednesday morning at 10:00AM, Dad and I took an ambulance ride from Plentywood hospital to the Plentywood Airport, where we were met by Dallas Aero, a charter plane company out of Poplar. With me as co-pilot, Dallas the pilot, and Dad and a nurse in back, the plane was full. Betty and Richard, Kathy and Earl, Janice and her family, and Erik and my girls were on the tarmac to see us off. Here is a link to the pictures: http://picasaweb.google.com/wendy.busath/2009_11_25#.

We arrived at the Provo airport about 3 and a half hours later and had another ambulance awaiting to take us to Utah Valley Regional Medical Center (UVRMC). Dad was checked in and comfortable by 2:00PM. The plane ride was very smooth and without mishap, and I got to learn a lot about planes and flying along the way. It was a great adventure for me, and Dad seemed to happily sleep away most of the trip in back, being well cared for by Mandy the nurse.

November 21-25 (The Stroke)

We are not sure when the stroke happened. The last time anyone saw Dad in person was the morning of Saturday, November 21. The stroke could have been that night or the next morning, or any time before Tuesday, the 24th, when he was found at home on his bedroom floor. He had fallen and hit his head on a heavy wooden chair that was sitting next to the bed. Luckily Dad's siblings were watching out for him, or he could have laid there even longer. The ambulance was called around 11:00 AM on Tuesday, and Dad was taken to the Plentywood Hospital.

Dad spent a few days in the hospital before I (Wendy) was able to get up there. My family and I arrived Saturday night after a 2-day trip in the car from Utah. The first night I saw him, I was shocked. After having talked to him on the phone, where he had sounded weak but fairly himself, it was disheartening to see that his neck was cranked all the way around to the right, he had zero movement in his left side, and he could barely stay awake long enough to answer a short question. He had no ability to see anything or hear anything on his left side and could not turn his neck far from the cranked position it lay in. Mostly, his weakness and tiredness left me scared that he might never be able to be himself again.