Mom keeps wanting to go home.

Dear Grassflower: Mom was diagnosed with dementia about four months ago. Miracle of miracles, my husband and I managed to get her moved to a dementia home without too much trouble. We told her we wanted her to visit some friends of ours and she settled in nicely. But now, all of a sudden, she’s been talking about wanting to “go home.” I’m not sure if this is just a phase, but she’s been persistent about it for the last few days and I’m wondering if there’s something I should be doing. Any thoughts?

~Dylan, Ohio

What’s really going on?

Try to remember what was going on when Mom first started asking about “going home.” Was it right after she left home? Right after she moved to your house? After a change in her medications? Around the time she got a UTI?

And while we’re at it, are you SURE she’s talking about the house she just left? Or is she talking about moving back to New York where she studied music 60 years ago?

The point is, there could be many reasons Mom’s suddenly asking about going home, and only a few of them actually have anything to do with going home.It’s fairly normal, for instance, for an elderly parent with dementia to ask about returning home right after leaving. Mom’s more than a little confused, she’s in motion, and her world is changing around her in the moment. That can be unsettling. But as Mom settles in at YOUR house, the feeling of being unsettled SHOULD go away.

Unless it doesn’t. People with dementia can become agitated about something, and before taking the subject of their agitation at face value, it’s important to look at what might actually be causing it.

First, look for a physical cause. Is Mom’s room too bright, too noisy, or just too “busy”? Is her agitation worse when the great-grandchildren are running around shouting at each other? If so, try to alter Mom’s environment to make it calmer. Does she have to go to the bathroom?

It’s not uncommon for patients with dementia to perseverate unproductively on a single thought for hours, and the reason has more to do with what’s in Mom’s bloodstream or her bladder than what’s on her mind. Some medications, including some antidepressants, can increase agitation. If Mom’s on a med that seems to increase her agitation, the agitation will probably “peak” not long after she takes it and gradually wane as the meds wear off. SSRIs, Risperdal, and Zyprexa may all help reduce Mom’s agitation, so talk to her doctor about the meds she’s on, when you notice her asking about going home, and how often.

On the other hand, she could just be thinking constantly about “going home.” The question, then, is what that means to her.

“Home” can mean many things.

Sadly, Mom can’t return to any of them.

A place

To you, “home” probably means the place you live, raised your kids, and park the car. It’s the place you have dinner, relax, and unwind; and it’s possible that’s the kind of thing Mom’s thinking about.

You probably feel more than a little guilty taking Mom away from the “nest” where she and Dad raised you, the old cuckoo clock on the wall that her son brought back from Switzerland one year, and the bed you climbed up into when there were thunderstorms.

Memories like that are hard to shake, and I recommend is that you don’t try too hard to get rid of them. But Mom doesn’t live there now—and isn’t going back—so it’s good if you can find a way to condense, abbreviate, and compartmentalize them.

As a compromise, make time to visit the old homestead and gather up only the memories you can fit in one carload and into her new room. It’s GOOD to jog what memory she might still have with reminders of her past. But there’s nothing special about the old kitchen appliances and no room for them in your house.

The home Mom lived in four months ago is now a strange place she doesn’t recognize, with “hidden rooms”, shelves full of books she doesn’t remember buying, and a vacuum cleaner and microwave she no longer knows how to operate. She can’t go back there. It’s not up for debate.

A time

It’s also possible that when Mom mentions “home”, she COULD be thinking about places she lived long ago. In that sense, “home” as a state of mind, one in which things made sense, she knew where things were, how they worked, and the world around her was familiar and not frightening. If that’s what Mom means, as before, there’s probably no going back. The best you can do is simplify her life to what she can manage. It’ll also help to remove things from her environment that distract or overwhelm her.

A feeling

Finally, it’s possible that “home” isn’t even THAT. It’s a vague concept of a place she needs to be, and it’s not clear if it’s physical or mental. My type 1 diabetic husband says that when his blood sugar is extremely low, he sometimes has a feeling that he should be somewhere, and that he doesn’t know where that is, but nevertheless feels anxious about needing to be there. If you see Mom looking for the flute she used to play in the 1980s, she’s not really looking for the flute; she’s just anxious about needing to “be somewhere”, and the reasons are probably 100% biochemical.

What to say when Mom keeps asking about “home.”

• Ask her what she needs from the house. Then tell her you’ll go get it. If it’s actually something she needs and it makes sense to fetch, then it’s a win-win!

• Ask Mom if she can help you with something. It doesn’t matter what it is. What’s important is that it’s NOT thinking about how to get home. Bonus points if it’s actually something she can help with.

• Tell her you’re too busy to talk details right now, but how about later? Of course, “later” never comes.

• Try changing the subject. PRO TIP: change the subject to DESSERT. 🙂

  Go for a drive. It doesn’t have to be anywhere in particular; it’s just the sense of traveling. Make sure you’re gone long enough that you can make an excuse for not arriving on time and suggest trying again tomorrow. If Mom appears to be fixated on something, keep the conversation moving to something new, perhaps what you see out the window. You might, by the way, want to avoid driving around sundown, as for many dementia patients, that’s when symptoms seem to get worse, especially the desire to “go home.” It’s so common it’s actually CALLED “sundowning.”

• Grab a snack. Food sometimes calms feelings of agitation. It raises blood sugar and activates the parasympathetic nervous system—the one that’s active when we’re calm and content.

WARNING: DO NOT drive to or past her actual home! Even if it would be convenient for you to pick something up, just…don’t. I cannot emphasize strongly enough that IT IS NOT HOME ANY MORE in any of the classical senses. She doesn’t—can’t—live there any more, and it no longer provides her a feeling of comfort or familiarity.

The job now is to make Mom feel “at home” as much as possible in her new, simpler, safer surroundings.