Anyone have experience with later-stage MS, Medicaid, and choosing group home vs. SNF? Cognitive decline is an issue.
Some of you know my story. After unexpected passing of a mid-sixties parent, I have responsibility for sibling with MS... very compromised and declining, many cognitive issues and a personality that is difficult at best.
I have a great deal of experience with elderly caregiving, dementia, etc. However, between dealing with a different disease, a younger person (40s), and the hoops and crazy of Medicaid, I am finding myself once again reaching out to this community.
The MS forums have been useless in ways that have surprised me. Most of the MS literature won’t even touch the serious cognitive decline that can come with that disease. It seems to be written for people with milder symptoms than my sibling has.
I use a great deal of what I know from dementia caregiving, but the logistics of placement, especially group home vs SNF, as well as how to handle any issues until social worker actually gets him placed, are wearing me thin.
I have spent months getting him on Medicaid, so much paperwork, so many overlapping meetings, one hand not talking to the other... this I expect from government funding. But I can’t seem to really convey how compromised he is... this is in part, due to him. He has all of the hallmark elder dementia traits we speak of so much here on agingcare. He says he can do things he can’t ( 12 years ago driver’s license was taken away), doesn’t recognize his own cognitive issues (I can manage, I am fine, but I want you to do everything for me).
Anyway, Social Worker is looking at a very small group home with a caregiver. I am not certain SNF wouldn’t be more appropriate.
Has anyone else had ANY experience with this? Just throw stories at me. I can sift through what is applicable. Will try to post more details later. Thanks.
All I can say is I am so sorry for all you are going thru. The paperwork can kill you. After getting my nephew SSD and a Trust set up, I had Mom. Getting her into an AL, then LTC with Medicaid I was tired of forms. So, I got my nephew people. He is with an agency called Resources for Independent living and the state DDD. I have been backing out little by little.
I am less worried about the others treatment of him and more worried about how he will treat them, lol. I think my big concern is the smallness of a group setting, his contrariness will be focused on just a few people. I am worried he is going to get booted, and we will be doing this again in 5 months. (I know that sounds selfish, but I am just worn out.)
He can be belligerent, impatient, negative, self-absorbed... a lot of this is his normal (pre-sick) personality. And it is extreme. He has alienated everyone who has ever tried to be there for him. One of those vortex people that sucks everything they can out of people. I hate saying that. I know it sounds awful, but it is simply the truth.
That is another piece of this super fun puzzle;)
I understand what you mean by paperwork, lol. I asked the Medicaid woman one day how in the world people do this if they don’t have an advocate. There is no way someone as disabled as he is could navigate this. I have a master’s degree and a background in finance and law and I have had a hard time wading through the red tape.
She just gave me a blank stare. Okey dokey. Won’t ask that question again, lol.
One thing I am very thankful for is previous experience in caring for the compromised. I, too, am trying to get a team wrapped around him... a team that I am letting someone else lead. Thanks for the reinforcement.
I appreciate the responses and will keep looking to hear more:)
I think your brother would be happier in the right group home if he can find it. DHs cousin actually found his last home on his own. His therapist told him about it and cousin made it happen. He is very happy where he is now.
Previewing the type of home is always important but consider that he will be with others with problems and won’t be the only one as much as he might think he is. He is young and yes it might take more than one home to find his niche.
Older people would probably put up with him easier but if he acts out they would be frightened. As in everything there will be pros and cons. In a SNF the elders would be passing on. The caretakers would be more his age. A lot to consider.
And yes, those are all good thoughts. The old vs young thing is especially difficult. Part of me actually thinks he will do better with the oldies than with people his age.
I think I am going to just go along with the SW’s recommendation. If he then needs to be placed in a higher level care facility, it will be up to the Medicaid team to re-assess placement for him and, more importantly arrange to move him. I have been as clear as I can be on where he is. If they aren’t hearing it, that is on them. I can’t make this a perfect situation.
Had to be with him at another event over the weekend, and he started in on me again. It sounds awful, but I have (very illogical, lol) moments of anger at my parents for dying and leaving him to me AGAIN. I had to practically raise him when we were young due to a divorce and checked out parents.
Now, due to his naturally prickly nature combined with the broken brain, he has rewritten history and acts like I have done nothing for him, ever. Even my DH is amazed at how the stories he used to tell have morphed so radically. As he said, “It’s like someone else telling about a completely different incident.” And it is. And I know why.
Knowing why doesn’t always make it easier, though.
He also has taken to complaining about my mother. The one who basically died trying to care for him. The self-control it takes to hear that and just re-direct instead of launching him is monumental;)
However, from the beginning, I have been laying boundaries.
Don’t want to do POA? That is fine. Find whomever you want, but I am not picking up that much responsibility with none of the authority/ability to do what needs to be done.
Why can’t I just move in with you? You have the room. Your In-laws were there. Sorry, Charlie. I will NEVER do in-my-home caregiving again unless it is my DH. Not ever again.
Can you come out to (at least an hour drive for me)... change a lightbulb, move my car (which he can’t drive), look at this video, get me cough drops? No, you can place an order or wait for your caregiver (3 days a week) or for my next visit. I am not making you comfortable so you can suck the life out of everyone around you because you don’t want to adapt to your (sad and difficult, but long-term) limitations.
I don’t like it here, I want to move. Fine. I will do all of the Medicaid junk and we will help you move, but our time and energy will ONLY be spent on that move if you have chosen somewhere safe, with the proper amount of care.
If I hadn’t been through so much of this with the ILs and found this site, I would have come into caring for him with guns blazing and made this situation even more untenable than it already is. So, I am VERY grateful for what I have learned here. If I sound snotty, it is only because I am so very tired of dealing with this stuff. So many years. My DH and I still need to heal from our last rodeo, and from my mother’s death. This was pretty much the last thing I needed.
Any other thoughts or stories, especially dealing with siblings or group home placement, are very welcome. They help so much as we are navigating this very unfamiliar territory:)