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Thread: Have I Made A Grave Mistake?

  1. #1

    Have I Made A Grave Mistake?

    My brother, Peety, has been in a nursing home for the first 3 years post injury. I have just received my letter telling me the state of Louisiana is ready to furnish sitters in his home for 15 hours a day - paid for by state. I jumped on it, as I've waited on their list for sitters for 2 1/2 yrs. now.

    Noticed my brother wasn't as excited about it as myself, but as I was fixing up his home getting it ready for him to move back in to, he got with the program and was very excited to finally leave that nursing home. He fussed and fought with aides, nurses, and administrative staff at that nursing home constantly while there. He HATED it while he was in there, saw and pointed out all their ineffeciencies to them, complained, threatened them with lawyers, the whole 9 yards.

    He was home 4 days, had to be admitted in local hospital w/UTI (3 BAD bacteria) and sluggish bowel (they thought obstructed-later decided not). While in hospital, he's been telling folks that he's "scared" to go home because he thinks he'll get sick again. I say he was sick when he arrived home w/UTI already present. He didn't get out of his bed at home for almost 3 days, stating that state sitters didn't know how to use the prehistoric lift that Medicare put there for him. Medicaid will only furnish ONE sitter, not TWO, and that lift really needs two people on my brother for a safe transfer (according to my standards). I think Peety was just scared they'd drop him trying to get him out of bed, so he stayed there, possibly messing up his bowel tract - no bowel program for two days.

    Now, here's my thoughts on this......He has this chance to make it out in the world in his OWN house, his favorite dog by his bedside, a state paid sitter 15 hours a day, family paid sitter 9 hours a day (24 hour care), state paid home health 3 days a week, just bought a second hand van for his transporting needs - sitting in HIS yard ready to take him into the sunset if he wants, our mother cooking his meals at her home, which is 1/4 mile from his home, myself running back and forth tending to his finances, management, etc. WHAT MORE COULD A GUY NEED? He thinks he needs nursing care......... he's scared to come home........I'm tired of it all.

    I see you guys out there driving yourselves around, going fishing, hunting, playing in the snow......I want this for him, but can't get him to see that it's a possibility. When is enough - enough? When do I stop trying to help him have a life? I guess I'm just very distraught and wondering if I've made a mistake here.

    ANY SUGGESTIONS? Any input will be appreciated.

    Vickie, Sister to Quad of the Year......(yep, I'm being sarcastic - sorry bout that)

  2. #2
    Being scared to come home after 3 years in a nursing home is pretty normal. I saw it alot in rehab where patients would get scared to leave. It's a big change. It reminds me of a scene from Shawshank Redemption where a prisoner is let out of prison after 30 some odd years and can't adapt to the world outside.

    Can he shift gradually? Spending a couple of days at a time, like weekends, at home to start? Once he starts feeling more comfortable at home and realizes he can survive by himself, he'll want to go back more and more I would think.

  3. #3
    Is there a way he could make friends with or at least meet other quads in your area? Peer counseling can be great for this sort of thing. He'd find out from them how live and why.

  4. #4

    Thanks for input. I'd actually been thinking that he was probably "out of his element" at home. I had been bringing him out of the nursing home during the day to our mothers home. He'd start looking for excuses when it came time to go back to nursing home, like "get me this" "get me that", to prolong the time. He'd be depressed all the way back to nursing home, usually escallating into a fight with me while trying to drive. I guess I thought he'd be the same at his house too.

    Actually, that's the answer I've been giving my sister and mother when they tell me "maybe we shouldn't have brought him home". I tell them, he's only been home 4 days, NOT long enough to stamp ERROR on the project. I think two months should tell the story, what do you think? He's already commented "everybody is gonna drive by my house to look at the freak" (meaning himself). I told him that wasn't so, but it probably is to an extent. But, what can I say? He's not the same, he's in a power chair w/hydraulics and it makes him look so BIG and awkward in that big chair. He's 48 years old now and I thought he'd be enough of a man to be able to handle the extra "attention", but I guess I've not been in his shoes.

    His old friends never came to see him in nursing home, he always wondered "why?". His own brothers (we have 3 more and a sister) have each been to see him about once in that nursing home. I'm personally very disappointed in my family as a whole. Our dad has been to see him about three times. Me and my poor mother are about all he's seen in the past 3 years - besides his friends in nursing home (that he says he misses). He was the black sheep of the family, not like the rest of us. He did drugs, none of us did, with my dad being a retired DEA agent. One of his old friends was on the porch the first day he came home, I think just to see what all the cars in driveway were about. Most of my brother's friends are drug abusers and have either died from overdoses or still in jail. He has pretty much come off the drugs, but still craves them himself and would probably do them if given half the chance. I really fear his overdosing some day.

    There's no way we can go back to nursing home and go back and forth for a while - now. I've already checked him out and it's on all the records for him to be able to have these sitters at home. I guess I'll just play it by ear and hope he adjusts. If not, I'll have to ask him what he wants me to do next and let him make that decision, I guess.

    Thanks again for input. Just needed somebody to vent to, I guess.

  5. #5
    How old is your brother?
    C5-6 - 22 years

  6. #6
    Senior Member feisty's Avatar
    Join Date
    Jun 2005
    Midtown, Sacramento, CA
    I say give it time... lots.

    Also- don't make the scenery TOO comfortable from his bed. The more amenities in bed, the less likely he is to get out and join the rest of the house and it's daily routines/activities.
    An administrator made me remove my signature.

  7. #7
    It took me a while to adjust to being home. Nursing environments and being in bed are 'safe'
    C5/6 incomplete

    "I assume you all have guns and crack....."

  8. #8
    Thanks for input....made me feel better about this move as a whole. My family is starting to second guess me on this one, but as far as I'm concerned, they haven't been there much in this whole ordeal, so they have no right to say anything to me about how I'm handling my brother and his care. I'm more inclined to go with his paralyzed peers (you guys) in opinion of this. You have been there, done that, and know how it feels, not ME, not my family.

    My brother, Peety, is 48 years old, was 45 years injury date.

    I have decided to give it some time and fight it out for a few months before I make any decision to put him back in a nursing facility. I personally hate nursing homes for disabled young folks like my brother. There should be a medium somewhere - homes like these retirement communities with on staff nursing to go along with sitters for people that are paralyzed and need the extra care. Then, they WOULD be with others for the "peer" element to take effect for them. Why hasn't anybody done this? It makes me want to cry.

    "Nursing environments and being in bed are 'safe'". That said a lot to me. Thanks RehabRhino. I had also noticed that he also preferred to "hole up" in his room when he did get up in his chair for a few hours, instead of going into his living room or on his new spacious back porch we'd built for him. Guess that was a "safe" issue too. I'll keep that in mind when he comes home out of hospital.

    Please say a prayer for me in next few weeks as my work place is starting to resent my being late for work and having to leave work to get state agencies situated in my brother's home. I've been here 30 years and in my opinion a few hours here and there shouldn't matter as my work is not suffering because of it. But....there are certain folks that take a "peering down the nose" view of my absence due to my brother's vast care needs. This upsets me too, adding even more pressure to an already pressurized situation. I'm about ready to tell them to take a hike, but need the job for hospitalization insurance for me and my husband. I'm very saddened by this new added burden to my sanity. Small business, booming right now (oil producers), family run (not a big corporation or anything). I was always told I was like "one of the family", guess not.

    Thank you again for your comments and understanding of this new move for Peety.

  9. #9

    God Bless

    God Bless you for being there for your brother! You are doing the "right" thing. I agree with giving it more time. It may not work out the way you would want, but if you didn't try it would certainly nag at you later. You say he has transportation so could you take him back to visit his freinds he had to leave in the nursing home? He could see the ones he likes without having to deal with the aides, administration etc. Most of us resist change. This might be a small bridge from "old" to "new". Also, is he on medication for depression? If not, you might want to look into that. As to his past drug abuse, was that ever addressed? I know a few fellow sci's who went right back to that lifestyle when they got out of rehab. That's a whole other issue you might have to deal with.
    I'm afraid I can't offer any real help or suggestions, you will certainly find them here though, from more knowlegable members. I just wanted to let you know that I respect you for all your efforts on behalf of your brother. Good Luck!

  10. #10
    Senior Member GoTWHeeLs's Avatar
    Join Date
    Jul 2006
    Oklahoma City
    What does your brother enjoy doing? Help him find some things to do around the house that he enjoys and will fill his days, that way he's not sittin there lookin at the wall or at the tv all day. IMHO I think this will put a stop to the staying in bed stuff. Its always better to wake up and get up knowing you have a reason to do so. I hope things start to look up for you and your family.
    Say what you mean and mean what you say because those who mind dont matter and those who matter dont mind.

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