dealing with many strokes at once

[caringfor5]

Hi to everyone,

 

My fiance was admitted to the hospital September 10th (you can read my introduction in the newbie forum "35 year old stroke survivor"). We have finally been told that his condition is under control but that unfortunatley he has had numerous areas of the brain that were deprived of oxygen and that those areas are dead and that they feel that he will be in a nursing home for the rest of his life. What is making me feel crazy is that he keeps doing things that maybe he wouldn't do the day before, such as a week ago he didn't move his limbs now he moves them ( with not alot of control) when he's awake and he opens his eyes and focuses on you, just a few days ago he wouldn't focus on an object. I'm frustrated and scared because I don't know what the future holds for us and I've had so many people (dr's, nurses) tell me that he will never recover and that he will likely be in a nursing home for the rest of his life that I literally feel like I could be sick if I have to hear it one more time. I know they feel like they need to drill it in, but it's driving me crazy and now I can't sleep and I feel sick to my stomach and I'm having a hard time dealing with everything in general. I know I'm rambling , but my question is is there any one out there who has suffered from many blood clots to the brain or read about anyone on this message board who has taken care of someone who has had this happen. They just keep telling us they don't know what he'll recover. He looks so sad and its breaking my heart to see him like this. Also they are just now starting to try to place him in a long term care facility and it's been a month since the strokes occured. They are having a hard time though because he doesn't have insurance and Medicare/public aid is still pending.

 

Any thoughts on this, I need all the help I can get right now.

 

Tina

[fking]

Tina, hello again and let me add my own experiences to your post and give you my thoughts,

 

I am now 64, stroked Jan 15, 2004, brain bleed, got to a hospital 5 hours later, stayed 3 months, released in a wheelchair. Still had to go in rehab to learn to walk better and climb stairs. They told me I would be in a chair for a long time. Within 3 more months after release from hospital, I was driving again, walking better but still paralized with little movement of arm, hand and leg.

 

It's been 19 months now. My condition is still slow but I'm alive and well. My wife quit her job to care for me. She's still not working, trying to find a job, I can function by myself, but still can't do some things, like cut up my food or hold things in my left hand. it only moves a little.

 

Don't drive yourself crazy and sick, it will get better in time, lots of time without having to go to a home. Just exercise as much as possible at home if you don't have access to rehab due to no insurance. The hospital rehab will give you "handout home exercises" to do at home.

 

He is going to improve little by little, day by day just like I did, and still doing today. The brain has to heal, regenerate with lots of rest in between. You will have to help him for now with some things when he comes home. He will gradually learn to do things like now the improvements you see each day.

 

If you wish, you may PM me and I can tell you all I know so you won't drive yourself crazy for no reason. If you have authority, I would not place him in an instution or long term home unless you feel there is just no other way. He is half my age, so with a can do and positive attitude he can go a long way in recovery and probably quicker than me.

[Guest lwisman]

His stroke was on Sept 10 which is not that long ago. Stroke recovery is measured in inches not miles. I would be skeptical of a medical team who is already saying there will not be a lot of recovery.

 

Personally, I was in a coma for 2 weeks. But I don't remember anything for the first 2 1/2 months. At that point I could only move my arms, not my legs. After a lot of therapy and hard work I live with my sister, walk an hour each morning, and am very independent. My family was also told I should be put in a home. Three were visited and none were found to be acceptable -- my family could not see me improving in any of them. Before the stroke I was living by myself. My sister moved me and all my furniture into her condo. That made all the deferent.

 

My point is that I think it is far too soon to make such a judgment. Can you figure out why they are saying this? You might ask them for other options. What will your insurance pay for? Also, is he is therapy now? Push to get therapy for him.

 

Good luck.

[caringfor5]

Hello again,

 

thanks to every one who has replied. You are all and inspiration and this message board has been a big help.

 

To answer some questions. My fiance is not getting therapy yet because he is in a cardiac intensive care unit and his health condition has only recently stabilized enough for them to consider it. I think they are painting such a grim picture because he has had many areas of the brain that were deprived of oxygen because of all the small clots that were landing in his brain. He has a rare blood condition that made him form clots on his heart and then these clots splintered off and they went everywhere. He even had them in his fingertips. That is why I was wondering if any one else has been in this state or known any one who was. What happens when alot of areas are harmed? They are looking for somewhere to place him and from what I understand he will get therapy. The only thing that they've done so far is evaluate him and put his arms and hands in splints and his foot in some sort of brace that the nurses are to move from foot to foot every couple of hours.

 

Whats frustrating is that I see things that are different every few days but the drs don't seem to see anything. I'm scared that he'll be left in a bed to do nothing because he can't do things on command. I don't know if that's because he can't get his body to do the things that they ask or if its because he doesn't understand what they are saying.

 

There are so many unanswered questions.

 

Tina

[Bumblebee]

This is the first time I have ever used this site. Forgive me for not having a clue. But Tina, I cried when I read your post. Nearly 10 years ago, the man who is now my husband, suffered a massive stroke. He was only 38. He went into a coma. The doctors declared him brain-dead. They told the family to plan his funeral; and asked if they could go ahead and remove life-support. (it had been a month) One cousin refused. He pleaded for 3 more weeks; to see if he could begin to breathe on his own. Miracles do happen My husband DID begin to breathe on his own, AND he awoke from the coma. Recovery was /is brutal. He was was completely helpless. He was paralyzed on the left side. Much cognitive ability was wiped out. Now, the effects linger. He drools continually. He cannot use his left arm or hand at all. He can only drag his left leg, and needs a wheelchair most of the time. His visual processing is VERY slow. He is numb on his left side. He is partially deaf and blind on the left side. His memory and cognitive abilities suffer. His personality changed alot. BUT...He went back to college. We met while he was finishing his practicum. One of our first dates was when he graduated with his Master's in Social Work. We just celebrated our first Wedding Anniversary! And I'm still "in Love"! He is a wonderful father to my son. He works full-time as a social worker for elderly people. He is very involved in advocacy and politics. My relatives are fond of him. He is gentle, sweet, and a wonderful conversationalist. There are challenges. But he is my soulmate. I have no regrets.

[LChatman]

Hi Tina:

My husband had several strokes before we recognized them as strokes. For a couple of years my husband would suddenly fall down, claiming his leg went to sleep or he would be driving and suddenly lose his sense of direction. We know now, as MRI and CAT scan have revealed, that those were strokes. In December 2004 my husband had a severe stroke that left him paralyzed on his left side, scrambled his vision, and zapped his short-term memory. He was hospitalized for 2 months, he only remembers one month. Nine months later, he takes 10 medications, can feed himself, no longer paralyzed on his left but he is very weak on the left. He can walk short distances with his cane but mostly moves about in his wheelchair. He can speak very well and can bathe himself with some assistance. After reading many of the postings on this site from caregivers and survivors, I have become so grateful for what my husband can do instead of what he's not doing. I am learning to be more patient and that I need to take time for myself. I'll be praying for you, Tina!

P.S.

I sent a message before but I used the wrong clickable smilies. Still learning!

 

LChatman

[Phyllis4732]

To Bumblebee: What a lovely person you are! Ypur description of your husbands attributes is beautiful. You are indeed lucky. And I must say, your husband does seem like a pretty great guy.

 

Phyllis

[tom71]

Tina,

Hello, first f all, I was 31 when I went in for open heart surgery, and I had several strokes during the surgery, My family was also told I'd never use my left leg or arm again, wasn't sure I'd even live! after 2months I was transferred to a rehab hospital, where I regained the use of my leg and started walking, I was in there for another month. Don't let the doctors /nurses get you too depressed, He as I have can recover! ,This mess started for me in Dec 2002, So it has taken awhile, but I'm still determined to recover my arm!, By the way, I got married in Dec 2004, after all of my problems, so stick with him I'm praying for a happy outcome for you too also!

God Bless

Tom

[Bumblebee]

Thanks for your kind words Phyllis,

I am so blessed to be married to such a great guy! We squabble sometimes; but he's perfect for me:) My son and I went through some very hard times before God brought him into our lives. He has brought an immeasurable amount of happiness, security, and love into our hearts.

[caringfor5]

hello to everyone again,

 

its been a few weeks now since Mike woke up, a month and 5 days since he was admitted to the hospital, every few days it seems like he tries to do more than he did before, but its not much. He has been moving his arms and legs a little and he lifts his head from the pillow now. Of course the doctors say that his movements have no purpose, but the nurse yesterday told me that he stuck out his tongue when he was asked to and he knodded his head when asked and also moved his toes, but he wouldn't do it for the doctor. His muscles seem to get stronger as the days go by, for instance his neck muscles seem to be much more strong. I was wondering if the purposeful movement will come in time or if they don't have it in the beginning will they never have it. I know that alot of the posts on here say that they or their loved ones were in long comas but I wonder what the progress was after they woke up.

 

Some days I feel joy for the tiny improvements and then other days I feel hopeless. I feel tremendous guilt for not realizing that he was having strokes but then other times I feel like if the doctor in the ER didn't think thats what it was then how was I suppose to know. As you can tell my emotions are all over the place. I'm scared for what the future holds for me and for him and not knowing is tearing me up inside.

 

Also, he still has not been placed in a long term care facility, he is still at the hospital because the social worker is having a hard time finding somewhere because he is on public aid. They are wanting to place him someplace six hours away. Is this something that happens often to people. The place seems to be pretty state of the art, but I just can't imagine him being 6 hours away.

 

I'm still praying that he will continue to improve. I wish he would do something for the doctors though.

 

Tina

[swilkinson]

You just have to hang in there as all the decisions are made. Sometimes you will be asked to participate and then just do what you think is right for him. I went through a lot of what you have been through and it is very scary.

Don't feel guilty. We had saying in Lifeline: "If I knew then what I know now I would have made better decisions." It is the equivalent of "better luck next time" really. There is no way of knowing prior to experiencing the BIG stroke that those moments of silence, that inability to get up first try or that sweating spell was actually the forerunner to a small stroke.

Now we caregivers have the information and we make the best use of it we can. You will grow into the situation too. You will just find that all your energy is chanelled into becoming the best caregiver you can and the central truth will be whatever is happening today. It takes a while for the world to widen out to include other people and events, but it will.

Six hours drive away would mean what for you? Relocating for the time being, commuting to visit, staying and praying? Ask those kind of questions that will get you the answers you want. At one stage the doctors wanted to move my husband 21/2 hours away, I asked what the alternatives were and found there was another choice. So ask what the other choices are. Are you living close to his other relatives? If not, close by whoever is going to help with the care may be a better choice. See if you can get others to advocate with you.

In the meantime we are here to answer your questions and give you what support we can. Hugs and prayers heading your way. Sue.

[caringfor5]

Hello again,

 

Mike is still doing things, although not consistently. They have found a place that has accepted him, but I'm uneasy about sending him anywhere. It isn't an acute rehab center because he isn't alert enough to go to one of those. We had a few options but one is completely out because we have found them on lists for violations. Out of the other two one is 6 hours away and the other is only 40 minutes away. The social worker said that the one that is 6 hours away is somewhat of a better standard, but that the other would be a good choice as well because of the compromise of it being nearer to us. Also, the one that is six hours away is not were he would be staying permanitely if he were to become weaned off the ventilator, so it would mean another move once that happens. Both facilities say that they will attempt to wean him off the ventilator but only the one that is far away actually specializes in it.

 

Is any one else out there that had there loved one go to a rehabilitation/skilled nursing facility and then be able to go to a more extensive rehabilitation center or is the end of the attempts to get him to recover some kind of function and quality of life or is this just the beginning. The social worker said that we would have to be very involved and if we notice improvements that we need to be very pushy with the therapists, basically she made it sound like it could be if we just let things go.......which I'm definately not going to do. I just want to hear what some of your experiences were.

 

Thanks for listening again,

 

Tina

[glaidice]

I AM A SURVIVOR. THEY TOLD ONE OF MY DAUGHTERS I WOULD NOT MAKE IT THROUGH THE NIGHT. MY THERAPIST DID NOT HAVE HOPE FOR ME TO USE MY LEFT ARM OR LEG MUCH. TOLD ME THAT AFTER 6 MONTHS THE BRAIN SIMPLY LOSES ITS SIGNAL. YEAH, SURE. I AM 2 YEARS POST STROKE. IVE REMARRIED, COOK, PAINT, READ WALK DO BILLS AND MOST OF EVERYTHING ELSE. DONT LET ANYONE LET YOU GIVE UP.

[VickiR]

Tina,

My Mom went from the hospital to skilled nursing and then to acute rehab. We were told from the outset that she had a "less than 50% chance of survival" and if she lived, she'd likely be vegetative. It sure seemed that way, too. One month out, she was unable to do much. Completely bedridden, speaking only one word answers, feeding tube, vent, unable to voluntarily move her left side... We were told to accept this new life. Thankfully, the pt at the skilled nursing home was very aggressive and had mom on her feet the first day she met her. It's been steady gains from there. Acute rehab didn't do much for us so we went home with in-home pt and ot and later onto to out-patient pt. Mom is still improving and most of all, she's happy and she's still here with me.

Believe in Miracles and by all means, be as present as possible for all therapy. People try harder when they see the patient is loved and has a support system.

[caringfor5]

Hello Again,

 

Mike has now been moved to a hospital near Chicago. Its not a rehab center because he's still not alert enough to participate in the long therapy sessions. He is minimally resposive at this point. He follows commands inconsistently. They have been doing physical therapy with him but its only once a day and I think its basically range of motion excersizes. He sees the speech therapist once a day but she is having a hard time getting him to follow commands also. I know he can do the things that she asks but he won't do it for her. I don't know if its overwhelming to him or he just doesn't want to or what. She said that by the time he leaves their facility she would like to have him be able to eat regular food and to be able to communicate in some way. She said that he doesn't strike her as not knowing what we're saying but just has a hard time doing the things that are asked of him.

 

It is very hard to be involved when your 4 and 1/2 hours away. I took off work for the first week and then I will go up there any time I get a chance but I'm afraid its not enough. Everyone seems to be very caring and I hope that they will try very hard to get him to respond. His Dad lives closer than I do but also works and can't go every day. We are trying to space our visits out evenly so that theres no more than a couple days. Hopefully he will become more alert and can move closer to home and go to a rehab center.

 

It's been 2 months now and he's moved through stages from being in a coma to vegatative (I hate that word) to now minimally responsive. I would say that hes been in this stage for a couple of weeks now maybe less. He gradually moved in to it, so I'm hoping that he will gradually move right through it. I just keep praying and reminding myself its only been two months.

 

Thanks for all your prayers and well wishes.

 

Tina

 

[pprovost]

Hang in there Tina!

I am glad that you can organize your visits to alternate with Mike's fathers' Range of motion exercises are a good investment for future movement and pain avoidance. At least human contact at that level will give some stimulation while you are not there.

It is still early. My doctors were very tight -lipped for the first two weeks after my stroke not wanting to commit to any false hope. It is hard on the loved ones but it protects themselves. What can I say? The best I can say is do your own research and take informed decisions as best you can. Perfect solutions don't exist. But some are better than others.

Conserve your energy because you will need it later when he returns home.

 

best,

Pat

[caringfor5]

Hello to everyone,

 

Just wanted to share the good news. Mike has been at the long term acute care facility for only 12 days and has made so much progress that they are already recommending that he be transferred to an acute rehabilitation facility. He is almost ready to have the trach taken out. It was "plugged" yesterday. He has begun to speak when prompted by a question or if I say I love you he will say I love you too. So that is absolutely wonderful. He also laughed the other day when I was there to visit so he is starting to show other emotion besides frustration. He is on a "mechanical soft" diet. He skipped right over the pureed foods. The physical therapy department has changed his orders to include going to the rehab room now instead of just getting excersices in bed. They are going to work on getting him to stand. They say that he is still very strong. They found this out because he tends to resist when they try to work with his muscles and he's so strong that he is able to keep them from working his muscles the way they want....hopefully he will come to an understanding soon that he needs to cooperate but he's had alot of injury to the brain so I think he may not understand fully and just knows that its not pleasant and he doesn't like it. I'm still very worried about his arms because he had small strokes in many areas of the brain he has had both arms affected, the left more than the right so I'm hoping that he can at least get function in one of them and since he's right handed the right one being less affected is a blessing. I just hope they can work with it to bring it back.

 

It was a very hard decision to make to transfer him somewhere that was so far away but I think we made the right choice. I just couldn't see him getting better in the places that were near us, they were basically skilled nursing facilities that may or may not have been able to get him off of the ventilator. We're hoping that he will get to go to an acute rehab that is closer to home. Unfortunatley none are in our immediate area but there are some that are about 30 to 40 minutes away. Of course then they may not have a bed open or accept him or take state funding. All things that factor in to were he goes. If he does have to stay in Chicago at least his Dad will still be able to see him during the week and I will continue to make my trips on the weekends and when I can get days off from my job.

 

Thanks again for the supportive responses. Every one here has really helped me to stay strong through this and to keep striving to make the best decisions for him.

 

Talk to you all soon

 

[caringfor5]

P.S. Now I have the worry that he will be in a new place and not like the therapists as much and stop progressing. I say this because the speech therapist has been great with him while he's been there and I think he seems to really like her and feels comfortable with her. I'm thankful that he progressed enough to go the next step but worry that he won't be as happy about moving as we are.......

[Guest lwisman]

Hi. It is great that Mike is doing so well. Ask his doctors about getting him into the Rehabilitation Institute of Chicago (RIC). It is one of the best rehab hospitals in the nation. I was a patient there for seven weeks and know they really made a difference.

 

I'm sure your doctors already know this, but RIC is very picky about who they allow to be a patient. (I cynically say this is why they have a very high success rate. They don't take anyone they don't think will dramatically improve.) Having said that, when I was a candidate, the doctors at the hospital where I was, chose a time when they knew I would be at my best to have RIC send a team to evaluate me, plus they worked at recommending me. It was worth all the trouble.

 

Good luck to all of you.

 

BTW does Barnes Hospital in St Louis have a decent stroke rehabilitation program? Or maybe the doctors think he is doing so well they want him to have the advantages of a place like RIC?

[caringfor5]

Hi Lin,

 

I do believe that Barnes has a good rehab facility. The one that we're hoping for if he stays in our area would be SSM St. Mary's which is a really good acute rehabilitation that is in Clayton. But we're unsure if they will accept him due to him not having insurance and being on Illinois Public Aid. I know someone who's husband was in a really bad car accident and she was told that he would not walk or talk ever again and he is doing both and more. He has made remarkable recovery and that is where he went right after the hospital and then went to a place called CCS in Carbondale, IL. Which was really good for him as well.

 

Mike hasn't officially gotten the referral to acute rehab yet but I'm sure with the progress he's made so far that they will. I will keep that in mind if they recommend RIC. I'll make sure that they coordinate it with a time when Mike is really allert if they come to evaluate him. That is a place that we mentioned.

 

Thanks for the advice

Tina

[tom71]

Tina,

Its great to hear Mike is improving! , he is so lucky to have you! I'm not sure why I feel this way but I really believe things are going to continue to get better for him,I'll be praying for him!

God Bless,

Tom