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Thread: anyone in my situation?

  1. #1
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    anyone in my situation?

    Hello, I am new to this site. It's been 18 years since my brother fell off a waterslide and became paralyzed from the shoulders down. In the early years, I wasn't there really; a fact I have a lot of guilt and grief about. I was 21 and away at university and my parents were all over the place with grief and blame. They split up and my mother lives a mile away but it's always stressful when they are in the same room together. I have been a regular and increasingly active participant in Kevin's life over the last 10 years and travel a lot between my home with my immediate family and Kevin and my dad. When I'm not physically with them I am working parttime on health, insurance, information-gathering,etc concerns for them. I guess maybe I just want to talk with others who might understand some of the issues and concerns I/we face and to hear what others have to say about how they've coped and lived positively. I have a husband, and a 4 year old, and they love Kevin and actively take a role in his life. My 74 year old father takes fulltime care of Kevin (who is now 36) but I see him aging and in spite of his determination to continue to care for Kevin, I know that can't go on forever. We are all committed to making sure Kevin never goes into a nursing home. So...what should we start doing for the future? I guess that's enough from me for now.

  2. #2
    Welcome clipsonc, nice succinct post.

    We're here to talk too.

    I guess my initial concern is regarding your father. 74 and caring for his son is tough. You mentioned "paralyzed from the shoulders down". What level is Kevin? C4? C5? Higher? How's Kevin's health? Your father's overall health? What's the financial situation like? Living arrangements?

    Ok, I'll stop here and wait for your response. The more details the more we can help.

  3. #3
    HI, and welcome; glad you found us!

    I guess what jumps out at me right away is arranging for some kind of care for your brother, but as Chris said, more info, please! Does he need 24/7 care? What can he do for himself? What is his insurance situation?

    _____________
    If we have no peace, it is because we have forgotten that we belong to each other. - Mother Teresa

  4. #4
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    Hi, thanks for getting back to me so quickly! Kevin is a C4 complete. Because of my dad and him working as a team for all these years, he's never had a skin breakdown. However, he does have health issues like neurogenic pain, wounds that won't heal on his arms and chest as well as those from nephrostomy tubes from kidney surgery 2 years ago. They kind of go along and Kevin is in reasonable health, but he doesn't get up much out of bed. The reason for that is complicated -- no insurance for a helper (he has more than $10000 which means in IL he's not eligible for DORS support). My mother is 65 and never has really understood Kevin's situation -- mental block? Don't know. However, she is a school teacher and has Kevin and Dad on her insurance. BUT, she is a very difficult woman and constantly threatens to stop the insurance, which is something we all endure. If the insurance ended they have Medicare (or is it Medicaid?). Kevin had his accident at 18 and had never worked for Social Security so is not eligible for SS. They live mostly off my dad's SS and dip as little as they can into the modest settlement they received. I wonder if you know if some states are better at others at giving care in the home rather than removing people to put them into nursing homes? We are considering moving to a state that better supports people like Kevin. His settlement would never be able to pay for 24/7 care for any length of time, and he does need 24/7 care. What do you think?

  5. #5
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    Oh and I wanted to respond to your other questions. My dad works at his health so he can live to take care of Kevin as long as he can. He is the most remarkable father one could have. Yet, he only has one eye and the other has a cataract. He is afraid if he has surgery he risks blindness. He had double hernia surgery this summer and now they are more circumspect about getting Kevin in the chair. They don't like or use the Hoyer lift; not enough room in the house for it and it's ugly and Kevin doesn't like being suspended in midair. His view is it takes two to get it around him anyway. So they rely on a two person lift of which my dad does the top half of Kevin and they have me or whoever is around to do the bottom half. They live in the same house we lived in as children, which is not disabled friendly except for a ramp our church built. Kevin lives in the downstairs den but it has a flat room and when it rains it leaks a lot. There is no wheel-in shower, etc. It is crumbling around them and it makes me depressed. They need to move and I want them to as soon as possible, but there seems to be so many concerns that it gets put off. More on that later.

  6. #6
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    Clip, hi and welcome! My brother is c5 and I am his caregiver the last 4 years.Your dad sounds like a pretty cool guy, as well as you too. It is hard to break routines and habits after years isn't it? They become kind of a safety net, if it ain't broke, don't fix it!
    Everyone will tell you to get a caregiver in , to give your Dad a break. But that isn't always easy to do. One thing that might help is starting a trust with the help of a lawyer, so that the nest egg can be saved, I know how important that is, because you have to think of when Dad won't be able to physically do it. Then you can get Medicare and a good doctor that can specify how much help is needed. Maybe starting with a few hours a day, to get them both used to it. It would be best if he was up out of bed more and had more ties to the community, but go slow, so they aren't threatened. Where would they move to? Would the Mother still insure them if they moved? It's great that he has never had a bedsore, that is really important, as you know. I use a hoyer lift almost all the time by myself, I had to think of my back health over a length of time. Jim is fine with it, but that may be because I feel comfortable and safe with it, having worked with them before. Are they in Atlanta or Peoria? I am 3 hours north of Atlanta in Knoxville Tn. If you can get the money put away so Kevin can get on Medicare, it would be a start. I hired a lawyer and investment counselor to do this and his fund has almost doubled, which is reassuring to me in case something happens to me. Sounds like an open plan townhouse or condo, without the yard work would be good for them, and Kevin could get up more and out more. Let your Dad know he has done a great job and needs to pass his skills along for when he is older. It's hard to know where to begin, and I hope my experiences can help. You're a good sister. Deb

  7. #7
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    Hi Lilsister,
    Thanks so much for your reply. I didn't respond right away because Rose and I were travelling to England (where we are right now) to meet up with my husband. We have a very complicated situation with Kevin and parents in Peoria, me and Rose in Atlanta, and Paul in England awaiting his Green Card. Anyway! We don't know where Kevin and Dad would move to because it's an open book for all of us. That's why I asked if there were certain states that were more helpful in their laws towards supporting the SCI community in their homes rather than taking them into nursing homes if they have more than $10000 (the ceiling in Illinois). It sounds like TN is ok? And if you don't mind me asking, what really are Special Needs Trusts and do they work? Is that what Jim has? And, on the more personal note, are you the only carer for Jim? Do you do his bowel and other care? If so, how do you feel about "crossing sibling boundaries"? It is great to meet and talk with someone in the same situation; I have been isolated for 18 years having never met a sister to a brother who is a carer. Best wishes, Clipsonc

  8. #8
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    Clip, no problem, glad to meet a sista! No Jim wouldn't have as much as he got with Medicare inn or Wisconsin, where he lived pre-accident without a special needs trust. We took Jim to 2 or 3 investment counselors and he picked who he wanted, then a lawyer. The lawyer drew up a will, a Living Will and emergent power of Attn for me. The investment counselor put the funds that he had where it wouldn't be claimed by Medicare. I couldn't have figured it out by myself! He was only on Medicare for a short time, then he finally won his Worker's Comp case which we had started 3 years before. Sometimes an Independent Living Center can help you with getting services and what/where to look.
    I am the sole carer for my brother right now, trying to get Worker's Comp to get a nurse started also. I do all the bowel, bladder, cooking,, etc. I am also a nurse, so it wasn't a big deal and he never seemed or seems uncomfortable with it. It's just bodily functions and we all have them. I think people take their cue or attitude from the other. In other words, if you are comfortable with it , they are, a few jokes, shared experiences help.
    I have read on this board, I think, that some states are better for services than others but I don't know how to look them up for you, sorry. Atlanta has the Sheperd Center, an excellent Model Rehab place and maybe they would help you. They have an excellant library with lots of information for SCI.
    I love England! Spent time in London, Oxford and driving through the Cotswolds. Best Bed and Breakfasts there. Hope you can get your hubbie over, the red tape is a nightmare. I tried to get my English friend a green card years ago, doesn't your marriage help? Deb

  9. #9
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    Dear Lilsister, I can see how being a nurse would make things ok and not uncomfortable for you. As for Kevin and I, it would be uncomfortable; I think we fulfil other roles for each other. Besides which, I have my husband and young child and I simply don't have the time to give fulltime to Kevin in that "total" way. I cook, lift, change bandages, handle insurance stuff, research stuff, transport, turn the tv and computer channels, hold the phone, feed, etc and generally serve as "uplifter." We've tried to keep our sister-brother relationship largely the same since before the accident, which works for us. Do you have any "time off" or is your caring for Jim 24/7? Thanks for your info on trusts, etc. I will look further into that. What made you move from WI to TN? Did you build your home or adapt one? Does Jim work? Kevin doesn't but someday I think if he found the right thing for him, he would like to. And as far as the Green Card, even though Paul and I have been married nearly 7 years and have a child, there is about a 3 year waiting list right now; the Bush Admin has suspended all kinds of civil liberties in their "security" efforts. It is frustrating. However, we will perservere. We've just been over the moors and seen lots of wild ponies and such; it's lovely here in Devon. Clipsonc

  10. #10
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    Clip, I think you are wise to keep the relationship where you are both comfortable. Jim is c5, type I diabetic and also incurred a Traumatic Brain Injury (TBI) when he was hit in the accident, so he is 24/7. But adaptive devices and limited use of his wrists allow him to spend time on his own-1-2 hours. He lived in madison, wisconsin pre-accident, worked as a juvenile counselor, had his own home, very atheletic. His house was anadaptable and with the TBI living alone was not in the game plan, in fact he was advised at Rehab to be put in a Nursing home. My husband and I have a large house, huge doorways, big rooms. We turned the library into his bedroom since it is on the first floor. The bathroom is not accessible yet, hopefully this year it will be done by worker's Comp. We didn't do expensive remodels at first because we didn't know if he would want to stay with us here in Tn. After 2 years he decided to stay with us and now we are looking at better solutions to the bathroom issue. We are small business owners and couldn't afford to do it on our own. It takes a while as you know to wade through the paperwork and decide what is right for your situation. So I guess, yes we are adapting, we are just taking the long route! I did get Vocational Rehab for Jim, and he took computer classes, but decided he didn't want to work. He retired from his job after 26 years to get the disability and insurance benefits. I am still, gently, urging him to more gainfully occupy his time, my latest scheme is as a tutor and /or classroom asst. at a nearby elementary school. He had never used a computer before and it has opened a whole new world for him, he reads the papers, keeps up with old friends,etc. As far as the trusts, try talking to an investment counselor at your bank, they can give you alot of info or point you to a reputable source. We bank at AmSouth and they have been great even come to our house for meetings. Once we got all the financial arrangements figured out, good doctors and a van that works well for us, it's been much better. Jim was on SSDI for a few years til Medicare kicked in, then he finally won the Worker's Comp. Now we are learning how to deal with them, with private insurance from his retirment as a back-up for non-SCI health issues. My husband, Alan, has luckily been supportive throughout. Besides this site, another that helped alot was scipilot.com, which gives life stories of how people have learned to adapt their environments for their needs. Hope your weather is good there, please go to a pb and have a ploughman's lunch for me, with a good stout of course! Deb

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