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Thread: family's unrealistic (?) expectations:HELP!!

  1. #1

    Unhappy family's unrealistic (?) expectations:HELP!!

    Hi everyone,

    I've never posted on any sort of forum before, so I'm hope I'm doing this correctly! I know this is a longer than usual post.

    I am the sister-in-law of a 60 year old man who was injured when he was 19 and was hit by a car while serving in Germany. He is paralyzed from the chest down, can eat and breathe on his own. One leg had to be amputated just above the knee at the time of the accident. He has diabetes and is morbidly obese-- at least 350 to 375 lbs. He has been diagnosed as schizophrenic and apparently had some emerging symptoms of this prior to the accident. He's done things like cll 911 because the water was dripping in the sink. He has MRSA and gets constant UTIs. He has had cataracts removed. I'm sure he had to suffer a brain injury at the time of the accident b/c he was thrown far from the scene and was unconscious for days.

    After the accident, he was put on valium for years and years and stayed at home with very little physical stimulation or exercise. I don't know if that was typical for the time, but I'm sure not much was known about treating these sorts of injuries 40 years ago.He has very limited interests, something that was true even before he was paralyzed.

    He lived independently for less than a year in a nursing home after his mother died and he moved out from home. He was non compliant with his meds and diet. At one point, he called up a relative and said he was in Michigan (from PA) and didn't remember how he got there. At the time, he had a modified van he could drive and somehow drove himself there-- scary! This was about 10 years ago. Things have continued to go downhill since.

    After this, several relatives have tried to have him live with them-- one even bought a home with an elevator-- but his mental illness was just too much to manage-- not even considering his physical needs.

    He is now in a VA hospital where all his needs can be addressed, however minimally. It's not the cheeriest of places by a long shot and the staff do their jobs in a rote manner with little special attention to him or anyone. He complains all the time-- but has been like this since I met him 25 years ago. He has gotten frustrated and has hit nurses on 2 occasions.

    My husband drives nearly 3 hours each way every weekend to see his brother and takes him out to eat and to go shopping at places like Wal-Mart.
    The family, especially my husband, continue to try to find a way for him to be moved out from the VA into a private care facility that would be nicer.

    I cannot imagine a place exists that could care any better for my b-i-l's complex needs. If there is one, I imagine it would cost a year's salary per day. The whole family thinks his deterioration is because he isn't trying hard enough and b/c the VA staff isn't helping him enough. He can no longer wheel himself, transfer, etc. I think this is b/c part of schizophrenia is having little to no initiative, and b/c his muscles must be atrophying with age.

    To make matters worse, one of the PT's at the VA told my b-i-l that he could benefit from some of the newer treatment at a program like Project Walk. I could just scream! Everyone is looking for a magic wand and now they think they've found it. There is no way he is a candidate for this program. The doctors never give a direct answer, but just hedge about his prognosis (according to my husband who probably hears what he wants to hear.)

    Does anyone know of a program where my b-i-l could get good treatment for his multitude of symptoms, even if cost were not a consideration? Does anyone think he could regain use of his body after all these years-- not to mention with his mental illness and uncooperative behavior? I have tried to get my husband to get into therapy or a support group so he can get out of denial and grieve the horrible hand his brother was dealt-- to no avail. I think it's wonderful of him to visit, and I go when I can. However, when my husband isn't with his brother he spends all his time worrying about him, feeling guilty, etc. It is taking a toll on him and our marriage. I realize my b-i-l's life has been beyond horrible, and hope there is an afterlife where he can be free and happy. I think at this point though the family needs to recognize that just having the VA, despite all its flaws, is a gift b/c without it, where would my b-i-l go?

    Any suggestions from others in this situation? I would appreciate any advice and a reality check about whether my rather pessimistic prognosis is warranted. Thanks for listening!

  2. #2
    Senior Member kate's Avatar
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    Wow.

    That's a tough hand for everybody, especially your brother in law ~ he must come from a terrific family to have so many people still trying to advocate for him after all this time & still hoping for the best.

    I'm not an expert about Project Walk, but many people on these boards have been there . . . here's one thread that started back in 2002

    http://sci.rutgers.edu/forum/showthread.php?t=47245

    that ought to give your family some insight about what PW is all about and who it can help. There are many others, which you can find by using the search box at the top right of your screen.

    That said, here's what I know that might be helpful.
    1. These kinds of family situations are extremely hard to navigate, not least because no 2 injuries are alike and so what has been good for one person will not necessarily be good for another. This means there will be conflicting stories, and everybody involved will be inclined to hear the one that tends to support the outcome they think is right or possible.

    Has there been a family conference with the VA? (Can anyone who has dealt with this kind of situation in a VA setting chime in and tell us how this would work?) I'm picturing his caregivers, his doctors, his family, and him in a room with someone trained to work through the questions and come up with a solution that makes sense.

    There's a lot of variance in how well-prepared the medical people are to deal with sci . . . very often families and people in chairs know a lot more than the professionals, just because the field is changing so fast and we have so much at stake in every small potential improvement. I'm trying to say that even with professional guidance, you still have to learn for yourselves what's possible.

    The thing (my opinion) that you sound like you really need help with is being able to get to a solution that everybody can see is the right one. Your husband should not be feeling tortured for not doing more, and your brother in law should not be feeling neglected, and you should not be worrying about how to get people to face reality. Professionals really can help with the family dynamics if they know what they're doing, and I think if you tell us where you are someone here might be able to steer you toward somebody good.

    2. Absent a clinical diagnosis of szchizophrenia or traumatic brain injury, it's probably not going to be helpful to speculate that he has either. If I were you and I thought there was an undiagnosed problem, I'd be trying to get it addressed. You don't say how long it's been since your brother-in-law lost his mother, but it sounds like he was able to have some kind of life under her care for quite a while, or at least was medicated enough that he didn't cause her too many problems.

    3. I'm one of those people who think that seeing a counselor is critical for family members. It's so important that everybody's health and well-being be considered ~~ yes, the priority is the injured person, always, but family members who have the means and the time to talk through their own questions and problems ought to do it. I'd have gone bananas with worry and rage and resentment without the guy who sat down with me once a week to give me perspective and help me hold onto my life. My family --not just me -- benefited greatly from the time I spent in his office.

    My brother died at age 59 about six weeks ago from a traumatic brain injury. He had fallen down a flight of stairs, and the prognosis after emergency surgery was that if he woke up from his coma, he would be paralyzed, blind, unable to speak, and sentenced to a lifetime in a distant VA facility. At the hospital there was a very gifted social worker who spent many hours with my family, helping us figure out what to do --and more importantly helping us understand how to keep being a family no matter what we decided to do. I wish I could send her to you.

  3. #3
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    S-i-l....

    Welcome.... I have no experience in a situation like yours but just wanted to chime in and say that my thoughts and prayers are with you.

    Sieg

  4. #4
    Super Moderator Sue Pendleton's Avatar
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    Have the VA get a shrink, as in a MD, not a psychologist from another VA facility to examine him. Mixing valium and the newer drugs for schizophrenia sounds like a dangerous combination. Trying to motivate a schizophrenic who is somewhat stable in negative sypmtoms is neigh impossible and should not be tried IMO until a TBI by MRI is ruled out.

    Many males start to emerge in their late teens so pre-injury mental illness is very possible. My MIL was a nurse in WW2 and worked with SCIs at Seattle for a short while after. They knew nothing about treating SCIs back then. Right now I'd check on his mental health status and his weight management first. The ability to deal with his weight says a lot about his brain and motivation. Then once that is straightened out start asking about physical and mental exercises to keep him healthy.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

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