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A myALZteam Member asked a question 💭
Northeast Florida

Lately, when I’m with my husband in memory care, he often breaks down into tears. He says things like “I don’t know what I should be doing”. But what I think he means is “I don’t understand why I’m here”. Then he’ll say “I just want to be by your side”. Or, “come on, let’s go”, which I think means “let’s go home”.

He’s been in memory care, for the last year and half. He’s in late stage dementia now and has been under hospice for about four months. This behavior started about a month ago… read more

April 13, 2023
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Answer Summary

Members offered heartfelt support to someone whose husband in late-stage dementia tearfully expresses wanting to be by her side, with many... Read more

Members offered heartfelt support to someone whose husband in late-stage dementia tearfully expresses wanting to be by her side, with many sharing that their own spouses also cling closely, constantly calling out or following them from room to room. Several members suggested giving him simple tasks like folding laundry or towels to restore his sense of purpose, noting that many people with dementia who were once busy and accomplished feel lost without a clear job or role. A recurring theme was the bittersweet reality of this stage, where moments of clarity can feel like brief rallies, and the importance of reassuring him that he is always by your side in your heart, even when apart.

A myALZteam Member

Even knowing my wife will only be gone for a couple of hours, as n Early Stage Alz patient, I still have to trust she will be safe and return. We usually go together, so I can get. A change of scenery.

April 15, 2023
A myALZteam Member

My husband used to say (this was when he was still at home but wasn't recognizing me or his daughters anymore), "You all have your jobs but what is mine? What am I supposed to be doing?" And I think it was because he was always the busiest, most hardworking person I've ever known, so it made him feel out of place and time to not have a job. I would tell him he was renovating a bathroom (one that he couldn't do too much damage to, though he did remove the door knob and messed up the cabinetry) and he would feel better about himself.
Catmama, I think that is what it is. I can just imagine how it makes you feel, though, and I am sorry that it is happening at this point. Could you tell him that he is always "by your side" in your heart? A year after my husband's death I still feel like he is "by my side" in my heart.

April 13, 2023
A myALZteam Member

I think you’re exactly right, Richard. And he is on one mood stabilizing drug, taken, orally. That’s respiradone. He also gets a topical cream with Ativan, Benadryl and Haliperidol.

April 13, 2023
A myALZteam Member

I don't know if this helps, but he may have been successful professionally, socially or in your Church, and wants to be "busy and useful". Not knowing where he is supposed to go next. Or what his next task is is frustrating.
Too much anxiety can be helped, medically.

April 13, 2023
A myALZteam Member

I remember those days, with my husband still at home. He folded many a napkin for me. Now he often spends time, folding and refolding the napkin they give him during meal times in MC. In MC, his caregiver sometimes has him help her fold his laundry, mostly the towels.

April 24, 2023

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