How do you deal with feeling guilty after you leave your husband with dementia at the nursing home begging to come home?

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My husband is in for ReHab after being in the hospital, but there's no chance of him being able to come back home as I can't care for him here, and it is making me feel so bad to hear him tell me he wants to go home. He is beginning to get beligerant about it and I;m not sure how to handle this. I am looking for admission to a VA center, but the waiting list is long and they don;t do Medicaid. Where can I get help?

Answers 1 to 10 of 19
Can you afford the VA without Medicaid? Are you also applying to other NH? How long can your husband stay in the rehab facility? Is there a chance you might have to bring him home until a NH spot opens up? Could you manage that with some in-home services?

It used to break my heart, too, to hear my husband plead and beg to go home, to pack his bags to go home, to wait at the door for someone to come to take him home. That was all while he was, in fact, at home. I have since learned that this is a very common desire among folks with dementia, and it is often not about going to a particular building, at least not the one they are currently or have recently lived in. Is it a childhood home? Is it just back to a time when they were happy? Who knows. But it is very painful to hear the plea and not be able to give them what they want. We can't make the dementia go away, and that, I think, is what they want and certainly what we want.

Do what you know you have to do, for his sake and yours. Hugs to you!
Top Answer
The rehab facility is supposed to have social workers and/or care managers who are supposed to help you if you tell them what you just shared here. They need to understand from you that you can't take him home - unless maybe you can given a lot of help, and that help is available under some kind of community waiver like they have in some states. Make sure they aren't just assuming all is well and you and he are perfectly ready for him to transition to long term care when the rehab part is over (I'm guessing he is in subacute rehab in a skilled nursing facility, and Medicare is covering the first hundred days?) Somehow most people eventualy adjust to the new reality, but its not easy. My dad had to go to skilled care after the umpteenth time Mom had to call paramedics because she could not help him up when he fell. He used to head for the exit at least once daily but the staff were really nice about redirecting him and apparently very sensitive to his feelings. He eventually decided that he was actually in sort of a religious retreat facility and we would be able to visit every so often - he'd read to me - they let him sit and read pretty much all day...Mom was different, she never accepted it entirely, she kept on belieiving if she could just get some more rehab she could get herself ready to go back home, but she was obviously waiting for the incompetent case managers to get it started back up again. For better or for worse, she really had no sense of how much time was passing; after three years away form home, she finally said that she didn't think she could live on her own at home again....but maybe we could find her an apartment. At that point she had been total care other than feeding herself and some grooming tasks she could still do for a couple of years.

Nana2, whatever else happens, don't try to do something that you can't do, or that just can't be done no matter how hard someone wishes for it. Try not to feel guilty for failing to do the impossible.
Thank you so much for responding to my question...it helps to know there is support out there. The VA dosen't do the Medicaid bit, so I'm sure I will have to go an alternate route if they refuse to take him. No doubt I will have to bring him home after the Rehab days are up and see what care I can get until other sources are available. I also have a disabled son here at home and if he gets down too, there is no way I can tend to both. I sound like a winey butt I know and there are so many worse off then me, but it is so good to have a sounding board to go to and I thank you for your chat.....I really need this.....Nana2
I can undertand how you feel. My mother was in a nursing home, and whenever we would visit her she would tell me that she was getting better and would be going home soon, I would smile and agree with her. So very sad. I wished that she was alive right now. I would bring her home no matter how difficult her care would be.
Joyewils, I hope you are not beating yourself up for what might have been. You made your decisions in love, intending the best for your mother. It is entirely possible that if you had kept her in your home the care she needed would have consumed your relationship. When others are doing the bulk of the day-to-day care you can continue in your daughter role. The time you had together when you visited wasn't spent with you distracted about a million things you had to do for her. And the outcome would have been just the same: she would have died and you would still miss her like crazy. I am very sorry for your loss.
NANA:

The only home he wants to go to is the one he shared with you. Where he felt stable, safe, and loved. His pleas for rescue are heartbreaking, but in my opinion he belongs with you ... at home.

Talk with the staff at the Rehab -- and VA -- and explore the costs of taking him home; especially funding sources and some type of home health aide. ... Unless he's a danger to himself and others; which I doubt.

I bid you peace.

-- Ed
Ed, just curious ... do you really think that absolutely every dementia patient can be cared for at home, through all stages, and regardless of other conditions they may have? Regardless of the spouses' own health and capabilities?

On what basis do you doubt that nana's husband is a danger to himself or others? You just generally don't think dementia patients ever get belligerent, violent or destructive, or you have some insights into nana's situation? And how did you conclude that being a danger to himself or others is the only valid reason for placement?

What makes you doubt nana's statement that she can't care for him in her home?

I have cared for my demented husband at home for eight years, and I hope to continue to up to and through hospice. But I have not promised him that, and I just had a family meeting with our 5 children, explaining my intention and also my vow to be realistic about what I can do and what he needs done. I have seen fellow caregivers agonizing over whether/how they could keep their spouse at home, and I have seen cases where clearly the best for all concerned was out-of-home placement, even though the demented person did not see it that way.

Just curious.
Nana~I think that feeling guilty will eventually subside-----The fact that you do make the effort and visit, shows that you care.....Caregiving or visiting has to be done with limitations, or you could both loose out......Best on your journey, Hap
Nana, your hands are already full with your disabled son. I can see why you are concerned that you would not be able to do double duty. You may want to start looking for nursing home placement, and if not, home health aide services. You are between a rock and a hard place, including emotionally. You are only 1 person and you are human with limitations. Sounds like you know your upper limits. Don't second guess yourself. Full-time caregiving is tough even with only 1 person to care for. It hurts when a loved one begs to come back home, but if it can't be done, cry when you need to, and still do what you know you have to do to protect your own health and sanity. Your situation is grueling. Hope you find the best solution that will work for you. Peace.
Thank you ladies for your kind comments...I'm sure Ed meant no disrespect, but as Jeannegibbs stated, "he dosen't know my situation". Your comments here have given me better insight and have made me feel so much better....and....whatever final decision I have to make, I'll make it with peace of mind. HUGS to you all.

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