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.
Dementia often erases recent memories but seems to enhance earlier ones. Old pictures were more recognizable to her than new ones of the same people. She often didn’t recognize my brother, who now has thinning white hair, but always knew him from his childhood pictures.
Perhaps if you prepare things to distract your husband your video visits will be less stressful.
But, your suggestion is good - and valuable. I will keep preparing “scripts” and having photos to show him - and will hope that we will get to the point where there are more good visits than bad.
Think hard about the live- in caregiver situation. It works for some people for not for everyone. A live in caregiver needs to sleep, take time off etc. Could you step in easily in these instances? You may have already found your husband the best situation for both of you at this time in your lives.
I tried the MC option with my husband and experienced the same guilt and sadness. On top of that, I lost a lot of money to the MC. Now, everyone is happier. You should try the live-in caregiver to see if you like it.
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.
Licing in a home out of your familiar surroundings is awful, lonely, depressing, ect.
Please put yourself in his shoes and do what you would want done.
Let him live out the rest of his life feeling loved, safe and happy in his own home.
My 96 yr old Dad is in his own home with 24 7 Care.
Please note. If you have to leave him in a home which I pray you won't, make sure you install a camera in his room so you can check in with him any timeday or night and you'll really be able to see what is going on.
I had Nest Caneras installed at my Dad's house and I have had to let a couple Care Givers go.
Everything and everyone is nice but when you're able to watch on a camera, you can see what really goes in znd this us especially true when it's a dementia patient because they can't remember what someone did or what happened to tell you about it.
Prayers
Bring him home if you can and hire a Caregiver.
It's also a lot more expensive to hire 24/7 care-givers, maybe they can't afford it. Even with those who can be kept home, "home" isn't always that home they are living in. 9 months after moving to MC, mom forgot her home of 25+ years and was focused on her previous home and her mother. Should I have taken her back to that previous home, kicked the owners out and dug up her mother? What if she drifted even further back in time, to a really old residence, or where she grew up?
Camera in the room *might* be somewhat helpful, esp with lockdowns since we can't visit, but some places don't allow them AND they encourage the residents to join activities, to be engaged, NOT sit alone in their room all day every day. It is one reason I did not get my mother a phone (between dementia and bad hearing, a phone wasn't a good idea, but I also opted out of a TV in her room - I didn't want her sitting in there all day, get out and socialize, join the activities, etc. HINT, again, they are not prisons. Sure, they can't go outside the unit, but they aren't locked in cells either.)
Home and caregivers can be an option, but it doesn't work for everyone. What this man is going through can happen in a facility, but it can also happen in his own previously happy home.
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.
He wants familiar, and being in an unfamiliar place is hard. Try to make the talks about common interests and events.
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.
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 carry on. What else can you do with changes? Go on the roof and crack up?
This is a new phase for you, which you have to learn to adapt to. What can I say? That's life. You are going to have to learn to cope -- friends are your best resource.
Taking care of someone with Alzheimer's disease is very hard work and it is back-breaking. I did it myself but I knew what I was doing. She had so many medical conditions aside from Alzheimer's you are better off keeping him in the nursing home.
Still, not knowing how long this expense will continue is daunting.
I have talked to an elder law attorney about the possibility of qualifying him for financial aid, but have not found a workable solution yet.
Yes, I know how you feel. My LO did exactly the same thing when he first went into MC. There’s no easy answer but it does get better over time. I found that too much communication did not help the situation. I’m assuming he’s in memory care. Take comfort in knowing he is being cared for by a team of professional people. Is he in the facility permanently? Does he have dementia?
I send you my best wishes to you.
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."
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!
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.
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!