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Stroke Community

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Rehabilitation for patients deemed unrehabilitatible.

by OldestDaughter, Mar 05, 2007 12:00AM
Tags: stroke
I am glad to see that there is a forum of this type online. My father (81) just had an ischemic stroke after having 3 of the bleeding type strokes. After his third stroke, he had at 80, he has been incontinent, bed ridden, blind and very emotional. We were also told that my father, due to his age and acute disabilitis was deemed "unrehabalitatible". My mother who is 71 is his primary caregiver and as loving as she is, I think she babies him, because she feels bad that he keeps having these strokes. Because of this I think getting him to do things on his own is even more difficult. My father is in a hospital bed, that has a electrical air mattress, in his home in the family room. They have a hoyer lift to assist in putting jim in a chair for a few hours each day, but he wears Depends and does not take part in his personal care. Can anyone recommend a book or web site that can help people that are this debilitated from their strokes? I would like to see some kind of structure, as far as our family providing physical or occupational therapy. By the way, we have had "hired help" come and assist our Mother, but for the most part we have not gotten very skilled people. I would appreciate any comments or recommendations to try. Thanks.
Member Comments (5)

by caregiver222, Mar 05, 2007 12:00AM
First of all, forget about the advise about being "unrehabitable". The pomposity of some members of the medical profession astounds me. That does not mean he may not be in a situation to improve, but don't take their word for it. My little 102 year old sweety-pie, with whom I just spent three hours hugging and making lunch for was deemed "unrehabilitatable" by "the best doctors in the country", could not hold a spoon, would not eat, could not swallow, was incontionent, unable to move, walk or feed herself or talk. "Let her die in peace" was their moronic suggestion. Guess what. The first thing I did when I took over her care was to fire her coumadin nurse and throw away the coumadin. And 21 other inappropriately prescribed medications. Well, you know what Davy Crocket said: "Be sure you're right, then go ahead". That was two years ago. Do not do this without consulting a physician. I only do what I do because of extensive medical experience. If you don't have that you must consult an M.D. Anyway, she walks (with assistancer), is no longer incontinent, and her conversational ability and sentience improves every day. And she laughs like a sixteen year old! And the love of my life. And she has the happiest laughingist days of any 102 year old on the planet!. Last week she re-learned to play "Patty-cake". I am troubled by the fact that there were three sequential strokes from bleeds. Needless to say, he should not be on coumadin, and if he is, I advise you to find another health care facility and a good asttorney The first thing to do is to stabilize him, and since he has had three strokes, he is obviously not stabilized. There are many possible reasons for these bleeds, all beyond the scope of a post. Sometimes there are physical ruptures of structures, which may not be repairable. Sometimes these problems are genetic. On the other hand many bleeds are due to as simple vitamin K deficiency. And the failure of the body to repair damage is often due to "Insulin utilization syndromes". I like that term a lot better than diabetes. Many patients with diabetes will have their skin crack and bleed when their insulin levsls are not kept under control, The repair mechanism does not work. So proper insulin control is a must. Don't follow any adviced offered by me without consulting a physician, but between me, you and the wall, coumadin is the primary cause of these continual bleeds. If they tell you "the coumadin nurse has to adjust the dose", find another medical care facility. Again, many physicians would disagree with me. So the issue of stabilization has to be addressed. Why is he continuing to bleed? That question has to be answered. Only when the bleeding is stabilized can you direct yourself to the process of rehabilitation. The usual drill when the insurance runs out is to talk the family into an unnecessary trach, because otherwise he requires expensive ACLS care. Then they talk you into a feeding tube because it enables unskilled medical personnel to take care of the nutrition. The first question you should ask is "why is the patient bleeding?", and if they can't answer find another medical facility. Don't leave without a written answer. The issue can be very complex. In one patient I was involved with he developed a bleeding disorder in the brain because of an auto-immune disease. The bleeding disorder was cured by a few weeks of prednisone. This case was a real puzzle and it took some very good physicians to put their heads together and figure this one out. Of course, it goes without sdaying I trust you have already requested copies of ewvery lab test and nurses note from the hospital. If not that is tomorrows project. But time is of the essence. The bird of time has but a little way to fly, and lo, the bird is on ther wing. Good luck and don't give up yet.

by caregiver222, Mar 05, 2007 12:00AM
He needs to be in a chair for more than a "few hours" a day. You also need to get him in a wheel chair with good soft pneumatic wheels and take him around to experience things. Outside if the weather is nice. At least an hour a day in sunlight. It is difficult if not impossible to be a "friend" to the aides. It is their job to instantly take care of incontinence and there is no exuse for their behing any odor in the room when aides are employed. It goes without saying he should be watching television as muich as possible on a good screen, and maximum use should be made of a "dry-erase board". Don't hesitate to fire aides if they don't perform. Most of them have a "monologue" they get from central casting about "how much they enjoy their work". You wanty him properly groomed, dressed and washed every day. And not in Pajamas. I went through this with my sweety pie when she was bedridden and could not move. They came up with a thouisand reasons why it was impossible, the clothes woulod get soiled. My answer was "If I come in her at ten A.M. and she isn't properly groomed and dressed you're fired". And she stays groomed and dressed until bedtime.

by vja, Mar 05, 2007 12:00AM
To: Oldest Daughter
I am sure Caregiver 222 is tired of hearing my story, but there are so many people that post that have not been told anything about stroke, caregiving, prognosis or anything else helpful from their physicians.  My mother is 91, right side paralyzed and cannot speak a word.  I also don't think she can see out of her right eye very well.  Anyway all the Doctors told me was two things "your mother will never speak again" and "you are dealing with end of life issues."  Well that was a big help, right?? Then she was kicked out of the hospital to a nursing home where she developed pneumonia and they gave her Robatussin until a little CNA told me "I think your mother has pneumonia and you must DEMAND a chest xray" which we did...yep, pneumonia.  I guess that is why she was refusing to do PT.  Anyway, long story short, don't give up hope.  It is very difficult. We have been dealing with my mother for 4 years now with caregivers at home.  All sorts of caregivers.  I must have gone through at least 50..very few are very good and none can agree on how the patient should be taken care of.  The staffing is a nightmare to tell you the truth, but our only other option is nursing home and we won't do that at this time.  What helped me the most was
FCA..Family Caregiver Alliance..you can find them on the Web...they take care of you and your Mom.  As far as books there are several on Stroke Rehabilitation on Amazon.  The most important thing, I think is to try to keep him moving and doing all he can do on his own as much as possible.  This is often difficult, as with my mother she does not want to do/ or cannot do anything on her own..she is very apathetci and just wants to be taken care of and pushed around in a wheelchair.  Our caregivers, get her up, showered, dressed every day, breakfast, nap and then out somewhere in the car and wheelchair.  She only stays home all day when it snows and then she is sitting up in the family room with the TV on.  You will always hear that "all strokes are different"  this is true as there are so many variables..but I believe recovery depends on 1) the patients willingness to try to recover (with PT etc.). 2) the family participation and caring and 3) the families finances to survive the whole ordeal without putting the patient in a nursing home.  Your Dad can make progress, but it is not an easy road by any means.
..but you are not alone.  Please conatct Family Caregier Alliance...they are free and very suportive.
Vicki  PS I am an only child..no siblings to help.

by caregiver222, Mar 06, 2007 12:00AM
I am never tired of hearing your story. You have done a commendable job under difficult circumstances. Your comments are very positive and extremely helpful to others.

by Tressa999, Mar 09, 2007 12:00AM
How well does your father understand language?  Check out the website www.youmeworks.com     It has nothing to do with stroke, but is great for helping people overcome discouragement, and I'm sure part of your father's helplessness is his discouragement.
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