Is there a way to help him understand this is permanent? (he is 86, diagnosed with ALZ 8 years ago, I am 20 years younger, we have been married 35 years) He is physically functional, can still bathroom, (though sometimes incontinent) shave, shower himself, but when at home, he frequently did not remember how to get from one room to the other, and sometimes didn't remember who I was, asked me to call his wife to come get him to take him home. I work from home, but have to take 2 - 3 business trips per year. I have used respite care before when I traveled for business and he didnt like at first, but got used to it and when I bring him home, he usually says something like, "they were nice to me, I'd go back there!" This MC facility is less than a year old, he has his own room, I decorated it like our room at home, and they are very nice to him, seems to be a very caring place. But for now, it will be permanent, and I don't know how long I can keep telling him I'm traveling, he keeps asking when he can go home. At the MC facility, they told me not to visit for 2 weeks to a month. I was so worried about him, I went to see him after the first week and have been going twice a week. He seems lucid sometimes, calmer and more accepting in the daytime, but frequently completely out of control with questions, being irrational at night when sundowners sets it. (Why did you do this me, when can I go home, I dont belong here, etc) and I worry so much that Ive made the right decision. He retired over 20 years ago and Ive done everything thing for him, waited on him hand and foot, (My choice, Im not complaining about that) but he is SO dependent on me now. How can I tell him this is permanent? I feel so sad for him, I know he is lonely. His friends will be able to visit him there, the MC facility told me they think its ok now for him to have visitors; His 3 adult children, all in their 60's so they are not kids, are not much help, they all live out of state, and his oldest daughter has not spoken to me in 6 years. She has never once asked me how her father is doing, his condition, etc. I guess she learns about him through the other kids because I do talk to them regularly. But I also send updates to his children by email, primarily for her benefit. I retired four years ago, but felt that I could not sustain keeping him at home much longer without losing my mind as well, so I went back to work to afford his memory care. This whole situation is killing me with sadness and worry, I really just don't know what to do.
"Where are you going?" I say "I have stuff to do, shopping, errands, etc."
"Well, what will I do?" I say: "Watch TV, take a nap, go down and see what they are doing in the lunchroom".
"When will you be back? I always say, "tomorrow, I will be back tomorrow" (I go every other day currently. I started everyday for three months). If she is down in the lunch room, I just check her room & supplies and leave). "See you, Mom, I got to go, I'll be back tomorrow".
I have noticed that although the sentences are exactly the same, she doesn't seem to be as anxious while she is repeating them. Just a fleeting moment of concern, then she walks me to the door, says goodbye and waves through the glass panel.
Three weeks is not a long time to adjust.
Why upset someone so far mentally gone and then upset them again (and again) when you answer their questions truthfully? Let them have some hope left (even though there is none). I would tell mother (who adored the doctor-any doctor), that he wanted to check her physically and make sure she was well enough and when it was time, he’d discharge her. She “bought it”. What harm did that do? She was totally confused. She didn’t know who I was but recognized my face, didn’t know where she was, what time it was, etc. I’m sure not going to burden her with “Mother, you are too far gone mentally from the Alzheimer’s and are way too physically heavy for me to bring you home.” That’s just mean.
I would have a meeting with the facility doctor to ask about meds to stabilize the severe mood swings at evening time. Worked well for my mom.
Good luck. You are doing and have done a wonderful job. I agree, check out getting financial assistance to help pay for his care. Visit your local senior center for lots of info and referrals.
Some people who have survived this process say just put them off/change the subject/deflect/lie, etc. I think this can be cruel. As someone is losing their grip on reality as it is, the ones they most trust are gaslighting them! I think grief and suffering are our rights as human beings; dementia does not change that. It's excrutiating to have to bear their grief... and it so readily becomes our guilt.
That said, how you do it is critical I think. If he is constantly asking, he may well already know, but doesn't know how to understand it, and or needs you to validate that he will live at MC going forward. He may or may not need explanations. I found over time with my mother that there were words & ideas that I would use repeatedly and they became reassuring: "This is your bed/ these are your lavendar sheets/ I will sleep at my apartment/ you don't need to go anywhere/ this is the best we can manage right now/ let's try and make the best of it/ I know you hate it/ aren't happy/ would you like me to bring chocolate next time I come?/ etc.
(If someone wanted me to "make the best of it" I'd get furious, but it was one of my mother's favorite refrains.)
My mother and I did not speak a language of feelings. This did not change. It was thru what she verbalized with others that I understood how she was coping.
I wonder whether you and your beloved husband are able to be sad together...
Finally, I encourage you and others to do all you can to try and relieve (his) discomfort/ anxiety/ restlessness/ agitation. If the staff has designed strategies tailored to your husband to minimize the inevitabilities of sundowning and they have not worked, enlist his medical providers. They've been treating this for decades. Many people have found cannabis ingestables e.g. CBD gummies, very helpful for dementia related discomfort. There is no point in suffering-for anyone!
You are not alone.
Have you explored any financial options (see Elder Care attorney if possible)? VA benefits? Medicaid? If you enjoy your job and/or are not eligible for any other benefits, working can offset the cost, but it would be great if you could find some financial help.
No cure for the sadness part really - time should soften it a little. Worry - for him? the "kids"? yourself? If he is in a safe place, you shouldn't need to worry really. The kids? It isn't like they are toddlers or teens. Keep them informed, that's about all you need to do. Assuming you have POA of some kind, so you can manage what needs to be done, are there alternate plans in place, in the even that you cannot manage his finances and affairs? It is probably too late to set up alternate POA, but it is a discussion you should have with the kiddos who DO talk to you. If he has any assets and something happens to you, without someone to step in the state will appoint a guardian and all assets are likely to disappear!
Has anyone suggested an anti-anxiety med? They ordered this for mom when we moved her. It was only used for the initial move in. However, when she got a UTI, we had to get it again - she normally is quiet, reads her paper, magazines, skims through (over and over!) sale catalogs, clipping out coupons or something that she thinks she needs... but with the UTI she was out of control, insisting she had to go home, had guests coming, tried every door, setting off the alarms, etc.
It doesn't have to be all the time or even very strong. Mom gets the minimal dose, only when needed. It doesn't take time to build up in the system, usually calms her in about 15 minutes, give or take a few... The one we've had success with is Lorazepam, something like .5mg (we only needed it for about 1 week until the antibiotics took care of the UTI. In his case, it might need to be everyday, at least for a while, given around the time he might start these behaviors.)
It doesn't leave them doped up, just takes the "edge" off. There are other ones available and it certainly can't hurt to try. Doc argued with me in keeping the order in place, saying it is a fall risk, but the only tumbles she had was during the first year, well before giving her any of this medication for the UTI and not during the initial move. It is such a small dose, I am not concerned with it (I am not a big fan of medication, but in this case, keeping her calm with a very minimal fall risk vs ranting and raving every night, it seemed like the lesser of two evils!)
To avoid those times, don't visit then - keep visits perhaps in the morning (unless/until some medication helps.) Avoid the sundowning hours!
The suggested therapeutic fib, hard as it is to do (ingrained in us from childhood to tell the truth!) would be better to work on. Clearly, although he may seem "lucid" at times, his ability to remember is failing, so is it easier to tell him maybe tomorrow/this weekend/next week, etc over and over, or to explain over and over why he must stay?
Either way you are going to have to repeat yourself, but sometimes it is best to leave the option open - saying tomorrow, or next week leaves the door "open" for him, it gives him some hope, whereas telling him forever doesn't. He likely won't take the truth well AND won't remember either response, so you'll have to repeat over and over in either case. Leaving the "door" open is a little kinder and less final than slamming it shut. It may be harder to fib, but it will be less painful emotionally for both of you to consider leaving that door open (I am NOT suggesting you consider taking him through the door, just telling him later!)
About 9 months after moving mom to MC she started asking about her mother (can I drop her off there, call her, have I seen/heard from her, etc.) Rather than having to tell her/upset her over and over and over again that her mother is dead (about 40 years ago!), I have to think quick and respond with a hopeful answer (maybe tomorrow, she's gone to FL for the winter, etc.) She also spent that 9 months hounding my YB to take her back to the condo. After the 9m, she forgot the condo and would want to go back to the house we lived in prior to that! Who knows what she considers "home" now (I don't ask!!!)
I don't think you tell him that this is permanent. He's in Memory Care for a reason. Can you get a sense of whether or not he knows where he is?
Just keep visiting and keep yourself busy and healthy.
You are not alone.
In my experience, the best results are just to visit him regularly during meals and activities. During those times, the mind is on the moment .
Hope this is helpful.
He was there only four months and his FTD was so aggressive that he passed in October. We were 15 years apart so what I thought what was going to be our 'golden years' has now become a time that I'm alone and never expected to be at least not now. The best thing you can do is to stay involved with what's going on with him day to day and to know that you have done the best you can for him. Though I know in your heart it's an extreme pain that no one else can possibly know.
Best of luck to you. This is one of life's most awful paths that some of us are forced onto.
You did the right thing because you lack family support. It is sad that his children do not want to be involved. You do what you need to do. Nobody likes to live anywhere but home.
But one question: Can you really afford MC with your salary? It is usually $10-15k a month.
You have given him a long time as a caregiver and that is a TOUGH job, no matter how much you love the person.
He has not been in his present surroundings for very long, and you may begin to notice fewer unhappy comments as he adjusts to seeing familiar faces among his caregivers, but even as that happens, he may continue to make breakthrough comments about his past.
If he admits to liking his respite experiences it would seem that you've found a pleasant and comfortable placement that at least at some level he accepts.
He may also begin to make friends among other residents, which should also help him feel more grounded.
You fell in love with him 35 years ago, you’ve seen him through his diagnosis, and you’re striving to bring him comfort and peace in his infirmity.
We all suffer when called upon to make these decisions on behalf of people whom we love.
Console yourself with the knowledge that you are still giving him from your heart, what your mind knows is best for him.