Please help- My Uncle had an Ischemic Stroke on Christmas Eve

[dmt0923]

I am so happy to have found this site. My Uncle Jerry who is 64 years young had an acute ischemic stroke on Christmas Eve. What a shock to the family and what a long two weeks this has been. He was driving from KC to Illinois when it occurred, but managed to get to his destination.

Jerry has been moved from an Illinois Hospital to its adjoining convalescent center. He was in the hospital a week and he has been in the convalescent center 10 days. I am visiting every Tuesday and Saturday and live in St. Louis.

I am trying to read and learn as much as I can to help my Aunt who is lost without him. (they have no children)Jerry has right side paralysis and cannot speak, but tries to grunt. His progress seems very slow, but showing some slow improvement with recognition and left side dexterity. They are now doing twice daily therapy and I just found out the speech therapist has been on vacation, but he should start speech therapy this week. Jerry cant swallow yet and they have him on a feeding tube!

What I am most shocked about is that they assigned him a doctor, but she has not even been to see him in ten days. He has had 3 C/T scans and I will have a copy of the latest one tommorrow. I have sent for his health care directive in KC which fortunately list me along with my aunt and his sister.

My question to the forum is there any recommendations you can give me on what I should be asking of the staff and the physician. Is it common not to have followup from a physician after you leave the hospital?

Any advice to help me help my Uncle would be forever appreciate it

[hopefullnurse]

Is there a reason why he is not in a rehab center? <<that would be my priority.  rehab should begin immediatley following a stroke.   perhaps it's because i/m a nurse, or that i have been recently through this with my father.. but after reading your post i was angry as hell.   no excuse for not having speech, occupational, and physical therapy daily.   having your uncle in bed all day will do nothing for him--other than slow his progress.  the physician--should be checking on him daily.. he also should have a neurologist following his progress.   keep talking to your uncle--say anything and everything.   hopefully he will find his verbal skills, maybe a word at a time, but better than lost forever.   If you can--get him in to a Rehab center.   if you can't, see if his insurance will pay for therapists to work with him in this place.   get on the dr's ass if you have to--they aren't GOD.  ask lots of questions and don't leave until you get the answers.   If you don't understand what they are saying, tell them -- get empowered.  nothing worse than feeling powerless over such a huge event.   good luck.

[dmt0923]

That is where they stuck him after he left the hospital and they are doing rehab in the convalescent center, but I am thinking he should be transferred to the Rehabilitation Intstitute of St. Louis with BJC/WU affiliation.

They are doing rehab at the convalescent center, but it cant be the same as a specialized rehab center, correct? Thanks for your reply! More thoughts would be appreciated.

[vja]

My mother went from hospital to convalescent home for rehab also.  She was also right side paralyzed and unable to speak..she is like that today at home with us with caregivers.
In our experience we have found that the rehab is much the same whether in the convalescent home PT, OT and Speech...the only real difference with a rehab center is it is MUCH MORE intense,
like 6 hrs of rehab a day..is your uncle up to that?  If he is still on a feeding tube, he is probably not ready for that intense of a workout yet.  Just our experience.

[dmt0923]

VJA,

Thanks for sharing your experience. I understand the rehab centers will  provide a more intense rehab. And you would be right, my Uncle is not ready for that yet, however, the rehab center I am considering is an 80 bed acut rehab with varying tiers of care, so I am assuming they will start working with him at his ability, but may challenge him more and have additonal resources to pull from. It is a freestanding rehab hospital. Two weekends have gone by in the convalescent center and it seems like everything just shuts down on the weekend. It took them 45 minutes on the weekend to get anyone to help him after a bad bowel movement (they were admitting someone and were short staffed) and they only do physical therap if they have the resource. He is not getting speech therapy because the the speech therapist is on vacation! Personally, I think Uncle needs much more therapy, but he could not even make 15 minutes today. Thanks again for your reply

[vja]

That rehab center does definitely sound better than the convalescent hospital he is in now.  The convalescent hospital my mother was in was total rehab on one side and long term care on the other and then there was another rehab hospital that was the very intense one.  If the one you are considering has diffent tiers of care depending on his ability it sounds good.
Good luck to you and your family.  I know it is not easy.

[vja]

One more thing, patients need lots of rest after a stroke...they need therapy too, but rest is very important and they are very tired after the stroke..the brain heals while they are sleeping and the swelling goes down, so don't worry if he sleeps a lot..that is normal after such a serious stroke.

[dmt0923]

vja, Thanks again for your reponse. We have the transfer in the process and he is being moved to The Rehabilitation Institue of St. Louis on Monday or Tuesday.

http://www.trisl.us/

I have no doubt this will be a much improved program and they will recognize the value of intense therapy balanced with time for sleep and brain healing. Since my 64-year old Uncle is not a fragile elderly person (just a bit out of shape and slightly overweight) I think they will push/encourage him to give it all he has. Right now the therapy is hard and I just dont think he wants to give it all he has, it is easier to just give up.

The people at the convalescent center were nice and compassionate and did what they could with what resources they have, but his insurance is paying for a certain number of treatments, not the quality of the treatment, so I believe he will get is moneys worth at TRISL.


The have done PT at the convalesent center, but no speech therapy in the two weeks since he has been there. They say the speech therapist is on vacation, but I am beginning to think they resigned and are looking for a replacement. At least that is what my gut is telling me. It has been exactly 3 weeks today since his stroke.

[vja]

Great news that you got the transfer.  I know you will feel better now..and you are right, your uncle is still young and he has that going for him.  After he gets some rest and time to sort of adjust to his new circumstances, he may just really go for it and recover at a good speed.  I have been told that stroke patients plateau...the recover a little then stop...then recover a little...then stop..so you can watch for that.  Good luck to you and your family.  It is not an easy road for anybody.

[skimp33]

I am alos in St. Louis

My father had a stroke about 8 years ago. He was 80 years old. He could not use his right side and he had a bad knee on his left side. The doctors told use it would take 3 people to get him out of bed. He would never transfer, sit up or walk. After 2 years he stood, after 3 years he was able to walk with a little assitance.

Some suggestions:

1) if a Doctor or PT tells you whatt limits he will have in the future you may want to find another Doctor/PT. They may only put forth an effort basied on their projections

2)Find 'can do people'. Before we could stand and walk my father was in a nursing home that had given up on him and before that he was at BJC were the doctor told us he would be bedridden. We found a PT at RPI who had a can do attitude. Even though we had to use call a ride to get him there the therpy was so much better. It was at RPI that my father was able to stand and walk. Also they caught alot of things the nursing home missed and alerted us and the doctors to this. RPI number is 644-1978. Of course your Uncle is not at this point.  No I dont receive a commission from them. :). We used call a ride to get him there.

3) Always make sure they are giving all the therepy he is entitled to. A docotr from outside the home can check
the records.

4) remind the staff while you are aware of his current limitations you want him to go as far as he can. Talk about all the family members and friedns who cant wait to see him home.

5) he needs rest to be strong for therapy. He needs visitors to keep up his mood but you need to balance this at this early stage.

6) Your uncle and the family may need a lot of support. We found a Psychologist at home Dr H Abramson (725-2299).
He expertice and experiance with older people was a great help. We continued to use him after he went into privite practice. May times he intervined on my father's behalf with the nursing home.

7) While it is important that he progress now,  much of my father's improvement came after the the  'one year plateau'.

[lahinva]

Thanks for your post.  It gives me some hope that my dad my progress further.  He is also 80 and had a stroke about 10 months.  At this point he can transfer and stand for short periods of time.  We try to walk him with assistance, but he doesn't do too well.  He has problems with short term memory.... Did your dad have any memory issues?  We just remain hopeful that some day he will walk again.....