Living in Alzheimer’s world

“What day is it tomorrow?” Mom asks.

“Saturday,” I reply.

“Oh, good. That means I don’t have to go to work.”

Hmmm. People have been telling me I shouldn’t correct my mom when she says something that’s not real. “Live in her world,” they say. So I decide this time to play along.

“Where do you work?”

“I don’t know, but I go every day,” she says, a mixture of wonder and dread in her voice, as well as a little laughter. “It worries me, because I don’t know how to get there.”

“Don’t worry; I’m sure they’ll come and get you.”

“My bosses will come and get me?”

“No, the people who work in your facility.”

“My coworkers?”

“Uh … no.” This conversation isn’t going so well, so I try to redirect it. “Who are your bosses, mom?”

“I don’t know,” she says.

“Well, what kind of work do they make you do?”

“I don’t know, sweetie. The brain’s not working. I don’t know what my job is, who my bosses are, or how to get there.”

“Are you getting paid?”

“Oh dear,” she laughs. “I don’t think so!”

I laugh, too. And I realize I can’t keep this up. Almost every word my mom says is tinged with irony, as if she knows it isn’t true, as if she realizes her imagination is filling in where her memory is blank. Which part of my mom do I support — the one making up stories or the one that knows they’re not real?

“You know, you really don’t work anymore, mom,” I say.

“I don’t? Well then, what am I doing here?” she asks, and we both laugh. I don’t think she really expects an answer, so I don’t offer one.

I completely understand why people think caregivers and loved ones should try to live in the world of the Alzheimer’s patient, to affirm the person’s experiences and beliefs. But I don’t think it works for my mom and me. Or maybe I’m just not willing to accept what the disease is doing to us. I’m not ready to relinquish my mom to Alzheimer’s world; I want her to stay in my world.

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About daughter3

My mom has Alzheimer's disease. She's 88 and lives in a nursing home. She has three daughters. I'm her youngest.
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8 Responses to Living in Alzheimer’s world

  1. Nancy Shamban says:

    So poignant..I’d love to meet your mom. She is very dear.

  2. Amelia says:

    We were discussing Alzheimer’s disease in pottery class last week. One woman, herself a cancer survivor, comes up here from way Down East to care for her mom. I mentioned your blog, how poignant it is, how you find humor and sadness in the situation. Others shared similar experiences with their relatives. Someone said that Alzheimer sufferers are the ultimate Buddhists–living only in the moment, that it takes years to achieve that kind of detachment (by choice, of course). It’s very hard for the rest of us to let go.

    A thought about affirming your mom’s new reality–perhaps asking about her feelings vs the facts might make it easier. For instance, inquire about her not wanting to go to work rather than where she works. Her feelings are real even though her workplace isn’t. Then you won’t have to “play along”. Just a thought.

    Thanks for posting.

    • daughter3 says:

      Thanks so much, Amelia. You’re absolutely right that I should address her feelings and not the so-called facts. I think my stubborn brain might be coming around to this.

  3. Barbara Glickstein says:

    I really like Amelia’s recommendation about addressing her feelings not the facts. My Mom also lives with dementia, although mild to moderate depending on the moment. She calls the activities at the assisted living place her work. She does act like she works there – she’s always been a leader and cares about everyone. So when we speak she’ll say I have to go to work now. Not sure it’s the same as your Mom’s.
    My mother recently met a gentleman friend at this facility and they were smitten for each other. It was gorgeous. Hand holding, smooching, and love written all over them. My Dad died this past October. When she spoke of him she would sometimes refer to him as her husband. It freaked his son out – not sure all the reason why – but what she felt was real for him and I believe returned. So at 89 and 90 they married themselves through their hearts.

    • daughter3 says:

      Thanks so much for sharing, Barbara. It sounds like your mom has created a pretty great world for herself — a workplace where she feels useful and helpful and a love relationship. That’s wonderful for her. When my mom talks about having to go to work, it usually involves her worries about how to get there. It doesn’t seem that my mom feels useful, yet when I watch her with others, it’s very clear she goes out of her way to help them, and they appreciate it. If only she could remember these interactions. It seems her historical memories/perceptions of herself are stronger.
      Thanks again for sharing!

  4. Amelia says:

    I’m glad if I can provide some support in a very challenging situation. Thanks.

  5. Belle says:

    Oh Beth, she does have a job…and it’s through you teaching the rest of us about this.

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