When I talk to my husband (Alzheimer’s), he is relentless in asking when he will be picked up - and/or insists that I “get him out of there” (the memory care community). The discussions often end in tears.
I have read up extensively on how to handle this. I acknowledge and validate his feelings, tell him I am working on a plan, try to distract him with other topics, photos, etc. He is not able to be distracted from his pleas.
The caregivers affirm that it is often difficult to distract him from packing up his room and waiting for me. He has taken down all photos, pictures, placed his clothes in piles around the room, etc.
I am getting to the point where I dread talking to him - and worry that our visits simply become a depressing and sad event for both of us.
I don’t want him to ever feel like he has been abandoned, and I want to remind him that he is loved. The last two weeks, I have avoided talking to him altogether on Saturday, Sunday and Mondays - and then do the Facetime visits Tuesday-Friday. But the caregivers affirm he still spends the weekend shifting things, convinced that I will be there any time to get him.
How do I help and comfort him, while finding peace with the decision to move him?
Any advice? Thank you.
It's a difficult transition for both of you, having him living in a Memory Care ALF & you living alone at home. You're both trying to adjust and there's a lot of trial & error involved. Difficult phone calls should be limited; I was calling my mother in MC 2x a day until one day my daughter said, 'Mom, are you crazy or what?' That kind of woke me up to the fact that I was getting ulcers myself from dreading those phone calls and guess what? They weren't doing my mother any good either, truthfully! Who, exactly, is benefitting from these phone calls to your DH?
What I find with my mother in general, is that if there is someone present in the room with her (a caregiver) during a call or a window visit, they're much more pleasant. It's when she has me 'alone' that the griping and complaining and carrying on get to a fevered pitch. Can you arrange to have a CG present during your Factime visits, if it's not happening already? It may help, it may not.
Part of dementia & ALZ is packing up and getting ready to 'go home', for lots of people, and they tend to do that for AGES, even after they've 'acclimated' to their new surroundings. It goes with the territory and with the disease itself. When I worked in a Memory Care AL, we had a resident who packed her bags EVERY single day, put her coat on, and waited in the chairs by the lobby doors (which residents were unable to exit through). She'd sometimes sit there for hours, humming or singing, until a caregiver came by to tell her it was lunch or dinner time. Then she'd leave and repeat the cycle the following day. She was a resident of this MC for several years at the time.
You can tell your husband that he can come home 'when the doctor says it's ok to do so' perhaps in the Spring some time. That puts off the matter for quite a few months, and gives you an 'answer' to his endless question about coming home. Therapeutic fibs & white lies are 100% necessary when dealing with AD and dementia, because simple reasoning with our loved ones NEVER works anymore.
My suggestion to you is to find a routine that works for YOU as well as for HIM. We tend to neglect ourselves when caring for a loved one with dementia, thinking they are the only important people b/c they have a disease, poor things. That's not true. Many, many of US wind up dying BEFORE they do............so please don't be a statistic yourself! In fact, I get lots of texts from my cousin telling me what a 'poor thing' my 94 y/o mother is, when in reality, SHE is the one who is making MY life a torture chamber! Gotta love the armchair critics and those who conveniently 'forget' there is more than ONE person involved with these situations!
Wishing you the best of luck!
When they moved to AL, mom thought it was a "nice hotel," and kept packing up perishable groceries (left unrefrigerated for hours or overnight!) Wanted to go "home." She also packed random clothing and personal items. Always different "stuff" each time. Put all that in plastic garbage bags. Dad and we kept telling her she was "home."
After dad passed away, 6 months into the AL residency, she was moved immediately to memory care. She kept packing stuff up to "go home," sporadically, but it tapered off eventually. Once she got comfortable with the routine, the caregivers, the other residents...it seemed that the packing activity ceased. She is now "home."
She also received an excellent psychiatric evaluation at her AL and added a second calming medication to her previous antidepressant.
It was the worst 4 months FOR ME in all the time I’d taken care of her. For her? Not as bad, I don’t think, although she did have periods of distress.
Hardest thing for me was to remain very level and calm when I was with her and cry after I left. And cry I did.
Can you use a benevolent scapegoat to shift the blame away from yourself ?
Blame his doctor?
For yourself, can you allow yourself to be a little more relaxed about his packing? If it’s not a problem for his caregivers, and he seems to be relatively peaceful doing it, can you think of it as part of his adjustment?
I wonder if an every other day schedule for brief face visits might be helpful too.
He is in a place of safety and structure because he needed more care than he was able to receive at home. It took courage for you to place him. In time, he will enjoy your visits but also be comfortable when you leave him.
It will happen!
Please know that you are never alone. Many share your experience. We are thinking of you. Take a bit of everyone’s advise because it is hard to tell what will give you and your husband the peace you deserve. Rest assured you “are” doing the right thing and you “are” doing your best. Be kind to yourself. Find comfort in remembering that when your husband’s brain could comprehend, that you showed him love and compassion, and he knew it. Love, Your New Friend that will continue to think and pray for you. Again, you are NEVER alone.
I've had the best visits by getting her to talk about herself: what did she do with her childhood friends, was her mom a good cook/what did they eat, her school days, first job, etc. We both can enjoy these visits when I have a list of these "starter" questions to work from. Talking about her long-term memories grounds her in reality for a while and replaces the complaints. I also avoid talk of what's going on outside of the nursing home as it only reminds her of where she is, which fuels the wish to be elsewhere (which you cannot realistically fulfill).
I also agree that a good answer is "when the doctor says it's safe for you to go home," but only say this when your husband brings it up. As for taking him home, please do not try that once you know it's beyond you. I've thought that through many times, but it's just our wishful thinking. Realistically, how could you handle your LO plus a 24-hour caregiver? What if they got sick? What if you got sick? And how long could you handle the care before you wear out?
You know he's as safe and pain-free as he can be with the level of care he's getting. That's the best you can do for him now in this imperfect world. So please go easy on yourself, and God bless.
I think it's good that you are giving yourself a few days off from the facetimes. Too much stress. I would think about cutting back even more, as suggested above, to give him more time to be there and in the moment instead of waiting for you to call so he can tell you to come get him.
He needs to be where he is and it takes time to adjust.
I like the scapegoat idea too. "I'm sorry honey but the doctor said you are going to need to stay there for awhile."
Or maybe make up some malady for yourself that makes it impossible/unsafe for you to take care of him?
Actually, I have health issues myself. I actually moved him to memory care the day before I went into the hospital for surgery. So I have used “me” as an excuse for not being able to bring him home.
He does not recognize or acknowledge that he is unable to stay home by himself - so that creates a problem.
Your thoughts are much appreciated.
I wonder if this would help your father. While visiting my husband and watching the other patients after lunch one day, they were all taken to a seating area, like a living room. I think they were awaiting Bingo.
All of a sudden a caregiver gave one woman a moving cat. The lady picked up that cat and hugged and played with its fur and she was so happy. She didn't speak, just kept petting "her" cat. I thought this strange that they would allow pets. The facility had several of these cats and a brand new infant baby as well, that got passed around to different residents to "play" with or "hold the baby", it was wrapped in a swaddling blanket but could be taken out and changed diaper, too..
I asked the caregiver if pets were allowed, her answer, "it's MECHANICAL". The cat wiggles, meows, purs , rolls over and just seems to have a good time with its "part time owner"
I looked it up on Amazon, and sure enough, mechanical pets were listed and they had a variety.
Could your fathers or mothers be helped to stay if they had a mechanical pet? The cost is around $100, but could be a little more, sometimes on sale. It would be something to be busy with, help get more focused in that rather than wanting out of there.
I had to do this for 3 years. My dad had to live in assisted living until I retired. When I called, he would beg me to pick him up. When I started chatting about the Dodgers or golf, it got better.
Do not ask about how he is doing, talk about yourself or other subjects, it will get better.
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