Home Living Vs. Nursing Home (caregivers)

[Vickie Neal]

Hello everybody.

My brother (2 1/2 yrs post SCI) has been living in a nursing home for the past 2 1/2 years. Needless to say, it has been one more horrific experience. I have personally placed sitters almost 24-7 in that nursing home for one-on-one care to go along with the "skilled" care he's supposed to be getting. It's proposterous some of the things I've seen in that nursing home. I had no other alternative when I placed him there and have felt very guilty about it since. He has been on a state waiver list for sitters in the home for over 2 years now. Finally, last week, his name came up for sitters in the home to be paid for by our state Medicaid system. I am currently filling out the paperwork to see if he qualifies or not. I'm told that he'll receive the maximum our state will pay for (15 hours/day in the home) if all goes well. I want this for him very much and have waited for this day. Home Health will come 2-3 days per week also.
I plan on paying for the extra 9 hours/day myself, so he will have 24/7 sitters.


My question: Do you think my brother will need skilled care (LPN/CNA) that a "sitter agency" might not be able to give him to be able to make it in the outside world (non-institution)?

He's a C5/6 incomplete quad and very dependent (I think I've assisted in making him this way)on his sitters for care. He can do more than he thinks he can when he HAS to. He has no grip in his hands to speak of and limited movement in both legs - cannot stand at all. He is in a power chair that he maneuvers quite well. He has to be helped with eating, bathing, catheter changes, bowel program. I will be within 2 miles of him at all times, but he will be in a house of his own to promote independence he seems to want (but sometimes doesn't want either). Irregardless, I'll be there should he need me as I've always been thus far, however want to slowly wean myself of him because it's killing me trying to work, take care of my family AND him too. I need this as much as he does. Even if this fails, at least I could say I tried for him.

What do you guys think???

Vickie

[RehabRhino]

Everybody is different but as some perspective, I am C5/6 inc quad who has less than 90 minutes of care a day and lives alone. I have limited hands, no leg movement.

There are those who need more or less but, unless he has complications, I don't see why he has to be that dependent. It's a hard place to come back from but it's amazing what you can/will do when there's no-one to do it for you

[Lizbv]

I think that state waiver programs are the first key to independent thinking, especially for someone who has lived in a nursing home. After a period of time it seems like we learn to accomodate to situations, and moving from a 24/7 facility to your own surroundings can be confusing. Life is pretty big and living in a nursing home you can forget just whats out there if you haven't had much outside interaction.

However. I'm here to tell you that your brother will be fine. At first, he may need all the help your talking about, mainly for peace of mind, but gradually, he will prolly find that he only needs help in the morning and at night with a home health aide, and a skilled nurse a few days a week, or one that can come out in case of emergency situation.

If your brother is a independent thinker, he will make his own descisions. Waiver programs are great, given that you are matched with a good social worker.

I'm confused as to why he had to wait on Waiver to "get out" of the nursing home. He couldn't of been on straight Medicaid living elsewhere with help?

[Timaru]

Unless he has all kinds of complications why does he need so much care?

I'm a c5 and not as independent as Rehab Rhino but if I had people crawling over me 24/7 I'd go slowly mad.

Couldn't he manage just with help getting into/out of bed and with BP?

21 hours a week max.

[Vickie Neal]

Thanks for input

Lizbv ----- My brother's on what they call "spend down" through Medicaid program due to his income being too much. He can have full Medicaid while IN a facility, but limited when he comes out. Until now, I'd thought he wouldn't qualify for the sitters at home program, but am told that he should - his income being just within the limits due to recent increases on the caps. I personally don't know why they ever let me get in the long line waiting for this care if he made too much $$. He's on total disability SSI and received a weekly comp check to boot. Not enough to pay 24/7 sitters that he thinks he needs, so I have had to leave him in nursing home til now. My brother is scared to come out of nursing home because of the safety factor. He's real uptight about it all, but I am going to go through with it just to see if he can do it. If he would be a 47 year old man and TRY, I think he would do OK. I'm banking on it....

Timaru ----- I guess I'll have to take the blame for his 24/7 need for a sitter. I over compensated him from the get go. In fact, to date he thinks of me as his enemy most days. We fight a lot due to the fact that I don't let him get away with what I used to early on in all this. He wants his way and pitches fits. Has psyc problems post SCI, unrealistic fears (someone's out to get me or kill me) associated with the way his injury happened. He would not get into bed unless someone was at bedside all night up until the last few months. He'd freak out if he woke up and nobody was sitting there for him - literally hyperventilate type stuff. All to do with type of injury (he was pulled off a top bunk bed and stomped almost to death - I think you might already know that, not sure).

Hope this post is not a duplicate --- the first time I typed it, it got lost and I'm retyping all of it again. If it's duplicated, please just disregard one of them....

Thanks guys!

[Broknwing]

Vickie-
I'll let the quads and caregivers relate more firsthand on the ammt of care he realistically needs once he gets into his own place...However, I have to ask, first, has he gotten any psychological counselling since what happened to him? It sure sounds like he might benefit from it. Also, just from your short description of what happened, were charges filed against the person/people who did that to him? Has he talked with a victim's rights advocate? There are a couple people on here(Bonita comes to mind) who are very familiar w/victims rights and what might be available yo him as far as services and funding.

[Vickie Neal]

Broknwing ----- If you can believe this, he was in jail and thinks the guards had everything to do with it - if they didn't actually do it themselves. After the local sheriff saw that he was going to be needing serious funds to survive and require ample hospital time, they conveniently met and dropped the charges (his first arrest ever) and with that went all responsibility to medical payments (according to them). I vowed that day that they would pay those medical bills (over a million now) if it was the last thing I did I'd see to it. Medicare generously has stepped up to the plate and paid all, with Medicaid filling in the co-pays and deductibles. That's why I presently have a lawyer - I want justice. Sheriff maintains to this day that he sustained his injuries (broken nose, both facial cheek sinuses crushed, fractured adam's apple which left him a raspy hoarse talker, and spinal cord contusion to back of neck) from a fall off a jail bunk 4 1/2' from the floor. Forensic experts tend to differ, along with nurses and doctors who cared for him early on. Just have to PROVE it now. Hopefully, justice will prevail, though my opinion of those in law enforcement has changed tremendously since this happened to him and seems to be a "cover up" for some reason. I no longer feel safe when I see a policeman anymore (and our dad served 20 years in Air Force as Security Policeman and then another 20 years as a US Customs Agent for the federal government) and I grew up respecting them very much. And I know you can't judge the whole lot by one bad apple, but I guess it just hurts to know that he went into their jail whole and came out paralyzed.

Yes, he's seen a licensed prof. counselor - who didn't do much for him - he said he knew more than SHE did. Now, he's in his second session with a psychiatrist that says he's not crazy, just needs somebody to talk to and gives him more cymbalta and seroquel to boot. Sometimes I wonder about these doctors..... Nobody seems to WANT to devel into his head - to take the time to do anything - to TALK to him and see if they can get to the bottom of his problem. I've screamed about this for years now and still can't seem to get anything done, partly because of my brother's non-desire to let a man or woman question him or ask questions that make him feel "stupid". He doesn't see himself as needing this kind of help, but needs it badly....sad.....

It's one of those things that I can't fix and have no control over, I guess.

[Timaru]

Ah, yes Vickie, I remember the story now.

I may be stating the obvious but his brain will have to be fixed before he can make any progress with his body.

I'm full of admiration for you, good luck with the fight.

Jonathan.

[Ashley]

i've had so many bad experiences with law enforecment, it's sad there really aren't positive examples set out there. psychiatrists are garbage, i'd see if you could find anyone of similar injury level to just talk to him about stuff. that's what i desperately needed was someone to relate to, not just some doctor pumping my system with mind-numbing drugs. while i was in rehab, there were no other sci's present just elderly people working back their health from various ailments. i had no one to talk to that truly knew what it was like. if i had a role model i would've become a lot more independent than i am now. these forums are great to share stuff with, but really seeing how another sci gets along will help him alot. My thoughts are with you both.

[Vickie Neal]

Very well put, Jonathan! His brain will have to be fixed before he can do anything with his body......Now that's a thought. Well put. Got me to thinking, for sure.

Ashly, I too think that it would do SCI's well to be put with others like them in the initial rehab process. Tried to acquire that situation for my bother early on, he refused to go because he was "scared" to be that far from all of his family (namely me and my mother) and he knew we couldn't go with him. The nearest center like that was Baylor University in North Texas, or one in Houston, another in New Orleans, LA. He would have had to go it alone (which would have probably been the thing to do) and didn't want to. He whined to our poor mother about it and she wanted him kept "under her wing" so she could tend to him as best she could and look at him every day (I guess) and they teamed up on me and I let it go. Wish I hadn't. Hindsight is 20/20. This could probably STILL be acquired for him, if he'd go, but he ain't. (excuse the bad English) Sometimes I think he'd rather wallow in his self-pity than help himself get up. Goes back to the old saying, "you can lead a horse to water, but cannot make him drink". How true.....

Vickie

[zillazangel]

Tough situation ..... tough love may be in order or he will end up completely dependent for life, which is not good for anyone. Strength to you!! and kudos for all you've done for him.