He has not been clinically diagnosed with dementia or Alzheimer’s. In the first care team meeting they told me that he has to be queued in order for him to safely walk with a walker. They indicated he needs 24x7 care which I am not physically able to provide, nor do we have the financial means to have an in home caregiver. It is heartbreaking to see him so miserable and he begs to come home. I have run out of things to tell him and I fear the next step when Medicare Advantage runs out is LTC with Medicaid. I’m at a crossroads. Do I bring him home and try to make it work or move him to LTC when the time comes? I don’t want him to feel abandoned.
The next day we went to visit him. He was very angry and complaining and demanding to be released. I said “remember how you kept falling and hurting yourself?” He nodded and asked why. I replied he was too weak to stand due to not eating much for months. He asked if he got strong again could he go home. I knew it could never happen. It also felt heart breaking.
It is very sad and very painful. And I really feel for you. But why try to do what you know you cannot do? It would only drag things out and make it worse for both of you. Trust me, you do not want to see him half naked, covered in s**t and in a pool of blood on the ground on your kitchen floor, unable to get up, or crawling on his hands and knees smearing s**t on the walls as he tries to make it from the bathroom back to bed. Knowing what I know now, I honestly wish I had insisted my dad go into a facility earlier than he did, to spare the three of us all that horror. It was my mom who kept saying she wanted to keep him at home, yet she couldn’t help him off the floor, couldn’t bathe him or change him.
I hope he adjusts and you adjust. I did see plenty of people in his facility who looked happy and peaceful. They were ALL well cared for by professionals around the clock who have way more means at their disposal than any home setting. They are used to all of it and trained how to deal with it. They are generally quite compassionate as well.
If you take him home (which you say yourself you can't manage) and wear yourself out, what happens next? He goes into a LTC facility.
Of course he'd rather be home. His medical condition prevents it.
You did not cause his problems, you cannot fix them.
It becomes about what he needs, not what he wants.
Sorry you have to face this.
An example, the one I was at, was in trouble with the state for leaving some residents in their soiled undergarments. One resident, waste went from her incontinence underwear to the mattress.
Can I wind back to why your DH is in rehab?
Frequent falls + mild cog decline but no fomal diagnosis if dementia/Alz right?
Is the issue he needs *assistance* NEW? (By assistance, any of; verbal prompts, cues, supervision or hands-on help).
Are there NEW factors?
Pain?
New medications?
Recent illness?
Recent surgery?
Has there been any mention of delerium? (Quite under dx IMHO)
Is his condition expected to IMPROVE in the SHORT TERM?
If so, home with paid caregivers for extra support in the Short Term *may* be an option?
Or, is this expected to be his New Normal?
Has there been slow or steady decline? Illness that is progressive? eg Cancer, Parkinson's, Heart Disease. A permanent change brought by stroke or accquired brain injury?
Sorry for so many questions!
Sometimes people take their loved ones home, hoping that wrapping them with love will be enough..
They HOPE to COPE..
Some have to TRY this - as Plan A.
There is no shame in moving to Plan B or Plan C.
A wise person knows their limits.
Best of luck to you.
Your husband's reaction to rehab seems as if he can't use reasoning to accept that he needs help. This sounds very much like some form of dementia. Please try and get your husband diagnosed as soon as possible.
If your husband requires such profound care (whatever the reason), you need to accept that it is beyond what you can provide. Mourn the past, but move forwards by not demonising the new situation and trying to make the best of it.
Look at all the positives of having your husband cared for in a suitable facility (sorry, I don't know what LTC stands for, although I assume the C is for care). Do everything possible to make it work and to make your husband feel that this new stage is being undertaken by you, together, that you are going to keep being his wife and his biggest supporter. Someone said "cheerleader" which really places emphasis on the team spirit of your partnership.
Many of these facilities put on the facade of being so nice to be at, but that is all it is, a facade.
I am so sorry for this dreadful situation.
I am concerned there is no diagnosis, because with this severe balance problem SOMEthing is going on. I think you should speak now with the rehab doc. Ask for a diagnosis. Tell him you need to know what you are facing. Is this Lewy's? Parkinson's? You need to know a diagnosis.
THEN realize that his being in rehab means this is the BEST place to get him transfered to LTC. If you try to do this from home, on your own, it's a crucible. You are going also to need to see an elder law attorney about division of assets for his care, so that his portion of your assets is used to pay for LTC placement while yours is preserved for you, yourself.
I think most of all, Bamagirl, what you need here is honesty. Have the rehab social worker meet with you and hubby. Tell her/him you need support in leveling with your hubby to tell him you cannot be in home caregiver and it is not possible to afford in home caregiving. Tell him you are sorry. That you MOURN this along with him. That you both can wail and can cry, but that doesn't remove the truth and necessity of finding the best place you can. That you'll visit and be there for support, but much as you love him that's the best you can do.
Don't expect happiness. You can't pay enough money to buy it and it isn't for sale. There is little in the end of our lives to BE happy about--at 82 that's clear to me. We all have to just do the best we can. And I am so very sorry. For you both.
I'm saying that you are horrible-izing what you think LTC and Medicaid is about. There are great places out there, so start researching. Get him in on private pay this way he gets first dibs at the Medicaid beds when the time comes. My MIL's place has activities and events every day. You can be with your husband every day. If fact, you may want to consider transitioning yourself into IL care in the same facility because eventually YOU will need more care and who is going to do that for you? If no one, then you need to get ahead of any needs or crisis.
You should also have a PoA assigned (and if it is currently your husband then this MUST be changed). Please see an elder law attorney -- it will totally be worth the cost (although sometimes the initial consult is for free).
There should be no luxury expenses like this for Medicaid ltc.
You have no choice but to go the Medicaid route for LTC. You should advise the rehab facility of this and start the Medicaid process and looking for LTC asap .
You did not make your spouse ill , you can’t fix old or dementia . Do not take him home . Without a dementia diagnosis it could be difficult to get him to leave the house again for placement . There are many threads here , people in that very situation . They regretted taking a parent or spouse home and are now finding it difficult to get them placed .
Tell your spouse the doctor says he can’t go home yet when he begs to go home .
I’m sorry . This is so difficult for both of you .