“I don’t belong here. I don’t belong anywhere.”

tigersmom

My DH has started saying this on an almost daily basis. He was DXed June 2021 with mild mixed dementia (ALZ and vascular) and has progressed to what I estimate to be mid-to-late stage 5. I started him at a day program two days a week and on citalopram 15 months ago. Three weeks ago, via a geriatric psychiatrist, we added 50 mg of seroquel twice a day. He has been on Aricept since diagnosis.

Since the addition of seroquel, his anger has subsided a bit. He still gets angry, but for not as long and is more possible to redirect. But… his cognition seems a fair amount worse. He is starting to fight me about showering, which he never did before. I don’t know if the seroquel is not working, is at too low a dose, or has nothing to do with any of this. On day 10 after he started the seroquel, he got angry and left the house in the middle of the night in a rainstorm. I found him three blocks away. He had no umbrella. He was wearing his slippers and carrying his shoes. He was very frightened because he was lost, and angry at himself for putting himself in that position. When I saw him across the street, it just about broke my heart.

This was a big wake-up call for me. The front door has been completely secured with a keyed deadbolt, and I have made five appointments to look at memory care facilities next week. I am really struggling, though, because this was not my plan. I thought I would care for him until he didn’t know me, or until the incontinence became too much to deal with (he is still mostly continent with reminders). What I am trying to figure out is what he means by these statements. Is he telling me he thinks he can’t live in the real world anymore? Is he asking for a simpler life and a different caregiver? He says this when he is frustrated by something, but it could be something as simple as me asking him to put on his shoes or brush his teeth. He also still says that he loves me, and that I am beautiful. When I take him to his day program, he is very anxious when he is separated from me. That’s what started us on the whole antidepressant thing to begin with. Help. Can anybody translate?

midge333

He is still on a pretty low dose of seroquel. His citalopram could also be increased. I would speak with his provider and see if his doses can be adjusted upward.

tigersmom

@midge333 , he is at the maximum dose of citalopram — 20 mg — for someone his age. Before his neurologist would raise it from 15, they made me get an EKG. Clearly there is room to raise the seroquel, but the existing dose makes him really sleepy. You’re probably right that a call to the geripsych is in order.

M1

I can’t translate but I sure can empathize. I think my partner also feels very lost most of the time. We have just brought in hospice, and the question is still out there about whether I can take her home- but honestly, I’m still not sure that’s realistic. The memory care is a safe and protected space, and home is not. If you end up placing him, that is not failure on your part tigersmom. I’ll be interested to hear what you think after your appointments.

Quilting brings calm

The behaviors you describe sound like dementia progression, very much in keeping with the stage you mention. The comment he made could be because he’s starting to forget that his home is his home. It could also be because he no longer feels secure because he no longer recognizes things as being familiar- as in being lost three blocks away. I think he will feel more secure in a facility with staff that he can recognize as being in charge and who can redirect him when he starts feeling insecure. I’m sure you will feel better knowing he’s safe, not out in storms.

Jo C.

Dear TigersMom, I am very sorry for what is happening and can imagine how difficult this is. When I read your Posts, it seems that possibly your DH feels the changes within himself and can no longer do so much or think and problem solve as he did in the normal range before the symptoms appeared.

If he feels out of sync and out of sorts, this may be why he feels he "doesn't belong." He is trying to find a way to "fit" and be able to manage, but with the impact dementia is having on his brain, sadly, it will not be possible to turn it around.

What is most comforting for a person with dementia is to have a sameness to their daily routines and their surroundings. Having the living spaces uncluttered and easy to manage; having a schedule as to how things are done daily. Not too much input at one time; no unnecessary changes.. One thing, one instruction, etc. at a time. Is going to a different setting during the day upsetting or is that being tolerated . . . when in the other setting is he getting a comfortable routine of "sameness" which would be comforting to him?

I am sorry this is happening. It may take some days to figure out just what the tolerance level is for his daily routines and going to daycare.

At this point, I would question the physician if the Aricept is worthwhile any longer; it often is not - it gives some assistance for some people for some of the time, but is not considered a long term assistance. Keeping meds to what he needs and not any more can be helpful in eliminating side effects we may not know are present but are somewhat driving a bit of the train.

Little by little you may be able to get things more stabilized. If placement should become necessary, you would not being something TO him - you would be doing something FOR him in giving him more comfort in a stable environment with daily routines that can be counted on.

In the meantime, if you planned to keep him at home throughout his illness, it would still be a very good idea to use the computer and research the care facilities near you. When you determine which ones appear most acceptable, then make personal visits. This is not saying you will use them, but you will know that if something untoward happens and placement is suddenly needed, you will not be caught up short having to run about town looking at facilities in a limited amount of time. Knowledge is power and this is something that may be helpful in the future.

I send warmest thoughts and wishes your way,

J.

midge333

https://alzconnected.org/discussion/comment/212584#Comment_212584

I am sorry - I misread your initial post as "citalopram 15 mg" instead of "citalopram 15 months ago". 20 mg is max dose in the elderly.

tigersmom

@midge333 , @M1 , @Quilting brings calm and @Jo C. , thank you for your thoughtful replies. @Jo C. , I think you hit the nail right on the head. I think DH is constantly trying to figure out why he feels the way he does but is no longer able to do so. He was a cardiologist and one of the smartest people I knew. To find yourself perpetually lost in space and time —I can’t imagine what that must feel like. To answer the familiar spaces question, I continue to take him to day care because he always has a better day when I do so. He was and remains anxious at drop-off, and he calls me multiple times to make sure I am coming back for him (I know, no phone would be better, but he pesters the caregivers incessantly when he doesn’t have his own). When the time comes to leave,it is hard to get him out of there. And he comes home tired and more relaxed. @M1 and @Quilting brings calm , I will update after I have finished my whirlwind tour of memory care places next week.I am afraid that is going to be eye-opening for me. In the meantime, my thanks again to all who responded. I value your thoughts,your experiences, and your helping hands and hearts.