Dementia and Tent Families: Stepping into Someone Else’s Reality

I was shopping at Target when I ran into a woman I know. Her mother-in-law has dementia.

If you’ve read my blog for a while, you might think I hang out at Target a lot. This isn’t the first time I’ve written about a conversation with someone I ran into there. In fact, I think it’s the third. I don’t really even go to Target that much, although it sounds like I have a booth there to answer questions about dementia. (Side note: If Target wants to pay me to pick up a side gig at such a booth, I’m open to it. I mean, they have optical. Why not a dementia question booth?)

In this case, the woman was upset because her mother-in-law, Beth, was more interested in another family than their family.

You see, Beth lives in a nursing home, and a family of four resides in a little tent in the corner of her nursing home…at least that Beth’s reality. Beth’s family’s reality is different. They don’t see a family living in a tent. They see a small table with a few figurines and a lamp on it.

“What should we do?” the woman asked me.

I asked if the tent family seems agitate Beth or make her angry or sad.

“No,” the woman said to me. “It’s annoying that they are all she wants to talk about but she seems to like them.”

I said that I didn’t see a problem…that perhaps this family kept her company…that maybe she found a sense of purpose in looking after them.

“How can you say there’s no problem when my mother-in-law is obsessed with a made-up family supposedly living in her nursing home room?” she asked, a bit frustrated with me.

I get why she was surprised when I said I didn’t see a problem. I get why she didn’t accept my answer. And I regretted how I worded my response.

I understand that this situation as a whole is less than ideal. I understand that Beth is a woman in her 70’s who is supposed to be enjoying her grandchildren. Instead she didn’t know their names. This was a woman who used to be everyone’s confidant. Now she rambled on about the tent family and couldn’t follow a conversation. This was a woman who ran her own business, and now she couldn’t even remember what she sold.

But she remembered the details of the tent family.

The dad was a doctor. The mom was a nurse. They had two kids–a boy and a girl. Beth said the kids were doing well in school. The boy even played baseball. The girl was sweet but absent-minded. She always forgot her jacket on chilly mornings unless Beth reminded her.

Beth’s daughter-in-law was resentful of the tent family–as resentful as you can be of a fictional family that lives in the corner of a nursing home room (which was actually pretty resentful). She saw the tent family as an obstacle in communicating and connecting with Beth. And she was frustrated that Beth could remember details about the tent family but couldn’t remember that any of her kids were married or that her own husband had passed away.

I tried to reframe it for her. Maybe the tent family was an opportunity. Maybe the tent family was a way to connect with Beth.

I suggested asking questions about the tent family and making them the center point of conversation. If they were the only topic that engaged Beth, it seemed like talking about them was the best way to engage her.

I want to be clear that I don’t think every problem is an opportunity. I’m not that person who minimizes problems and tells you they make you stronger and contribute to your personal growth. I’m your realistic friend–not your sunshine positive rainbows friend.

Sometimes you have mean, awful, ugly problems and there’s no way to reframe them more positively.

But once in while…once in a while…we see something as a problem when it’s not a problem.

Dementia is problematic, to be sure. It creates challenges and it hurts people and it limits lives. It can be one of those mean, awful, ugly problems. Obviously.

But the tent family? I didn’t seem them as a problematic. In fact, I felt like everyone should just accept and makes friends with the tent family.

I didn’t think the woman would take my advice. She seemed resistant to accepting the tent family as part of…their family.

But then I got an email from her a few weeks later. Here’s an excerpt:

I asked Beth about the tent family and we connected like we haven’t in a long time. She was so excited to tell someone stories about them. Each time I go, I get excited to hear what she is going to tell me they are up to. Last time she told me that dad was cheating on the mom and she was planning to tell the mom. She also said the boy got caught kissing a girl behind the school and he was grounded. The girl was twenty years older, so the parents weren’t happy at all.

Sometimes what we view as a problem isn’t such a problem. And sometimes stepping into someone else’s reality–especially when it’s quite different than our reality–is where we connect.

 

11 thoughts on “Dementia and Tent Families: Stepping into Someone Else’s Reality

  1. I see no harm in going along with the mother’s ‘imaginary’ tent family. The fact that she seems happy and is excited enough to talk about them to her daughter would be a plus. Eventually, her mom will be locked in her own mind, and unable to communicate. Be grateful for the moments of lucidity (or vocality) with your loved one, for one day you will wish you had listened more and judged less.

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  2. Isn’t that just awesome. If that happens to me, I would like that my family will also connect with me that way. Connecting through a tent family is much better than no connection at all.
    I have an online game that I play. Cannot be bothered with all the statistics etc, so I tell stories about the titans, troops and battles. Dawn of Titans is a game that older youngsters like me play. Most between 35 and me 56. It is a game with a community. My friend get her DOT story every day lol

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  3. My Mom had Lewy Body Dementia with Parkinson’s and she had a tree family. She’d sit on the couch looking out at the trees across the street and I would ask her questions about them. She really enjoyed her “other family” and I was happy to be able to go into her world and talk to her about her friends. She’d also talk to her Mom (who had passed a few years earlier) and her real dad (who had passed years earlier) all while she was in bed getting ready to go to sleep with her bears. I miss her a lot and her birthday is this month, I guess I’ll just have to celebrate it for her.

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    1. My eldest sister had Parkinson’s and one day I was visiting with her and her husband. They were sitting on their patio and my brother-in-law asked me to look at the palm trees in the neighbor’s yard. He said my sister insisted there were monkeys in the trees. I told him I couldn’t see them, but didn’t doubt for a minute that my sister did. The mind is a funny thing and it does play tricks on us. How can any of us know for sure what another sees?

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  4. It’s a gift when the hallucinations are pleasant. My husband’s took a decidedly turn from happily chattering children in the house to a pretty involved neighborhood conspiracy to cover up cannibalism. I let it go on for too long, until he had a total melt down on the kitchen floor, and a full blown traumatic retelling in the neuropsych’s office. I medicate him now to keep the voices below the surface.

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    1. So very sorry for this situation. IT must have been traumatic for you as well as your husband. Take care. Sorry for the typo —

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  5. OMG yes! Mom tells us beautiful stories about a little girl she rescued. Over the last few years she has “rescued” many children. In that reality, Mom’s the hero!

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