Alzheimer's DiseaseMemory Loss

When Someone With Dementia Says, “I Want to Go Home”

By January 29, 2019 April 21st, 2021 No Comments

By Paula Spencer Scott, Caring.com senior editor

One of the hardest things to hear someone with Alzheimer’s or another dementia say is,  “I want to go home.”

I used to dread the moment near the end of a visit with my Gram (who had Alzheimer’s) when she’d perk up from a semi-stupor in which she no longer recognized me: “Where’s my purse? Have we paid yet? Let’s go home.” Briefly, she sounded almost like her jolly old self.

No matter how long I was there, or what we did, it ended like a perpetual restaurant outing.  Except of course that she lived at this “restaurant.”

I’ve since learned that “I want to go home” isn’t usually meant literally by someone with moderate or late-stage Alzheimer’s, nor should it be taken that way.  Some things I’ve learned:

Don’t argue, “But you are home!” For one thing, the “home” being spoken of may not be the same place you’re thinking of. When my father refers to “going home pretty soon,” for example, we’ve learned that he doesn’t mean the house where he lives now or the town where he lived for 40+ years. He’s referring to far-away Upper Michigan, his birthplace, where he hasn’t lived since college. His long-term memory and emotions have conspired to have made that place the representation of a feeling of deep security.

Arguing with someone with dementia, as you already know, is counterproductive.

Hear “home” as a feeling you need to read. When people with mid- or late-stage dementia who live in a facility or are hospitalized say, “I want to go home,” what they’re really saying is, “I’m uneasy,” or “I’m scared.” To all of us, the very concept of home is a mood that’s soothing, familiar, and safe. Doesn’t matter whether the “home” in the person’s head is a childhood home, the home where they raised their family, or the place they live now – or all of them co-mingled as a just particular, satisfying kind of feeling, rather than a place.

Don’t be overly distressed. Hearing “I want to go home” can provoke lots of emotions in family members: Worry that “she hates it here.” Guilt at having placed her there. But remember that by mid-stage Alzheimer’s, the person is not very capable of manipulating you, if for no other reason than within a short time she will have forgotten what she said (unless you provoke and prolong by arguing over the geography of home).

Go along to get along.  I always think of this adage coined by the wonderful consultant Joanne Koenig-Coste, who’s now working with us at [Caring.com] (http://www.caring.com/): “A fib-let is better than a tablet.” Too often, the person is told, “This is your home now,” and their underlying emotional need goes unaddressed. The person grows more distressed — and then is often medicated to calm down.

Better: Give a hug. Meet that emotional need (fear, uncertainty). Be positive, not negative: “The weather’s too bad to go out now, maybe later.” Or, “Why don’t we listen to some music first?” Shift the attention to a happier ending.

With my Gram, we finally learned to get her engaged in dinner or we’d ask one of the aides who took a special shine to her to distract her. We learned not to make a big deal of seeming to leave “the restaurant” without her.

I try to keep in mind the more-true-than-I-knew adage, Home is where the heart is.

Does knowing this make hearing “I want to go home” any easier? I hope so.

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Reprinted with permission.

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