Hemorragic stroke Recover Times OK (con't)

[lahinva]

I just wanted to continue on the Hemmoragic Stroke recover time thread.... My dad is doing OK in the acute rehab center, but it seems like again after just one week there, they are already giving up on him.  His tentative discharge date is Oct. 12th.  My mom wants to bring him home after that so currently we are trying to find help for her at the house.  It is very difficult..It seems like there is no one that really wants to help you.  Tressa999 how did you find your in home help?  Do you have 24 hour help?  Are you able to transfer your husband on your own?  I'm really worried about how hard it is going to be for my mother when he comes home.  But she really does not want him to go to a nursing home again.  He really has not improved a whole lot over the last 5 months.  I try to remain hopeful.....

[lahinva]

I just wanted to give everyone an update on my dad... He came home from the acute rehab facility 10days ago.  He is doing very well.  Getting stronger every day.  What was weird though was his first morning at home, he woke up like he had just come out of a coma.  He had no rememberance of any of the hospitals he was in or that he had had a stroke.  Ever since that morning he has been so much like himself.  He doesn't talk crazy any more.   His short term memory is still not all there, and sometimes he still thinks that he can get up and go to the bathroom himself, but we can deal with that.  It's so nice just to have him back to where we can really talk to him.  
I had heard from the time he had his stroke that stroke patients do much better in their own home, I never guessed his mind would improve that much so quickly....
He still has a hard time transferring himself, so my mom has help approx. 4 hours a day right now, but we are thinking of going up to 8 just to give her more of a break.  He seems to have a determination to walk again, so I hope someday he will be able to...  

[sailorswife]

I hope the people who posted at the beginning of this thread will see this message.  All of you helped me so much at a difficult time this past summer.  It has taken me almost 4 weeks to be able to write to you.  I wanted to be truthful, but without taking away hope or inspiration from anyone struggling with hemorrhagic stroke.  Many of you may remember that my husband had such a stroke on July 2.  You encouraged me and followed his progress, as he awoke from a coma that almost no one believed he could recover from.  On September 19, my husband of 31 years died.  He had an overwhelming infection, and perhaps another bleed, because over the last 10 days of his life he gradually lost many of the abilities he had gained when he came out of the coma.  He just ran out of strength and slowly lost the ability to talk or even to regulate his most basic functions (like breathing).  Even though I had fought for him with extraordinary measures in early July, this time I chose not to put him back on a ventilator.  I feel certain he would have been a prisoner to it for the rest of his life.  Deciding to let him die peacefully was the hardest decision I ever made.  He just quietly stopped breathing one night.  I am heartbroken, almost beyond words, but I need to say this to those of you with loved ones who have had a hemorrhagic stroke:  Trust Your Heart Always.  Sometimes it is right to keep fighting for your loved one, and sometimes it is right to let go.  I am glad I fought for my husband when I did.  We had at least 6 weeks that were a precious treasure ~ the most intimate experience of our marriage.  He held onto me with all his strength.  He told me how much he loved me and made many amazing remarks that I will never forget.  Don't ever let anyone influence you to let your loved one go before your heart tells you it is time.  Look inside your heart for the answers you seek.  When it was time to let go, I knew it with every fiber of my being.  Thanks to everyone in this group who cared about my husband, prayed for him and for me, or tried to encourage and comfort me.  Right now, it brings back painful memories to be a part of this thread, so you many not hear from me again.  Anyone who wants to talk to me can write to me at ***@****.  My name is Marilyn, but I will also always be my sailor's wife.

[lahinva]

Thanks for all your help and encouragement.  I hope my mother will be able to handle all this.  It is so hard being in another state while all of this is going on I feel so helpless.  We are beginning the search for help today, so hopefully we can find some reliable people....

[Tressa999]

When we were in WA state I found two helpers by putting up ads on bulletin boards all around the community college and also registering with the job center of the com col.  I also found one helper through a retirement home.  I went in and asked a dining room worker if she knew of anyone who was looking for this type of work and she referred me.

When we got home I needed someone immediately so I went to the street where day workers look for jobs and hired an extremely nice, big, strong, 55 yr old man who used to be a fire fighter in Mexico City.  He works 8-10 hrs/day, 6 days a week (not Sundays) and has been an enormous help to us, but my husband seems to have lost all the Spanish he used to know, so the communication gap is a problem.  I still intend to employ this man several days a week, since he's so good and knows all our routines, but I recently decided to hire Eng speakers several days a week.  

So I posted ads around the community college in our town and also registered at the job center.  I also registered (Through the Web.  Didn't even have to go there.) at the job center of the closest 4-year college--about 12 min. drive from our house.  So far I've received 8 responses from those two colleges, most of which sound extremely promising.  The first one will come this Sunday.

I pay $10/hr plus $5 for lunch, so that I don't have to figure out what to buy for someone else's lunch.

I can move my husband from bed to wheelchair and back.  Also from wheelchair to toilet and back, but only if we have removed his pants on the bed.  I can't pull down his pants while transferring him to toilet bcs he has pusher syndrome.  We have three plastic urinal bottles which are more convenient than the toilet.  When he has a bowel movement he uses the toilet if a helper is here or if I'm alone with him and he realizes he has to go to the toilet in time.  But if he suddenly starts shrieking that he's gotta go, then I don't even attempt a transfer.  (I did once and we both ended up on floor when I tried to pull his pants down while he was standing.)  He just turns on his side and I place a small plastic rectangular basin (little pink plastic thingy I brought home from hospital) under his buttocks.  I put a piece of plastic under the basis in case there's any leakage, but there seldom is.

The hardest time was the first few days, while we worked out our routines.  Now it isn't bad.

No, I've never had 24 hr. help.  I have help 8-10 hrs/day and I plan things to get everything done during those hours that I need help with.  As you know, we're doing the Vasa Program, and he is getting stronger all the time.  Many things that were a struggle for the first few weeks are easier now.

I would think it would be good for your mother to have help for maybe as much as 14 hrs/day for the first few days, until she figures out how she's going to handle things.

My husband spends most of his time on a large futon on the floor.  That's where we both sleep and where he does his exercises and where (sitting up against a love seat) he eats breakfast.  He eats lunch outside in his wheelchair, then we do a few exercises outside, then helper takes him for a walk, then he takes a nap on the floor futon.  After nap we do exercises on futon again and helper and I get him into wheelchair before helper leaves.  He eats dinner at dining room table, we go outside, watch TV, visit neighbors, whatever.  I'm able to help him get from wheelchair to floor futon for the night, but at first he was not that mobile and had to sleep on the bed bcs that was the only place I could transfer him to, or else he stayed on floor futon when helper left, but then he had to eat dinner there and I feel it's better for him to eat dinner at table.

Hope this helps.  Trial and error.  I've made plenty of mistakes and shed plenty of tears of frustration and exhaustion, but things seem to be working now.  We wouldn't be able to afford this much help forever, but Dr. Vasa assures us that he will be able to walk.  Not happening as fast as she thought, but he's certainly getting more active.  We're grateful for all the progress he's made and looking forward to his walking by Thanksgiving (or Xmas... or New Years...)