Dementia Family Care

Sometimes words can be music, not information.

My mother is 96 and has lived with dementia for more than 12 years. At this stage of her dementia, logical conversation is no longer possible. She may talk about people who died decades ago as if they are still here, or put people and places from completely different periods of her life into the same conversation. She may also repeat the same thing a hundred times. Sometimes it feels like a thousand.

I don’t spend my day correcting her or trying to make everything she says make sense. I go where she is.

Stop Demanding Logic

When someone we love says something that isn’t true, our instinct is often to correct it. “No, Mom. That’s not what happened.” “I already told you.” “You just asked me that.” “Your mother died a long time ago.”

But logical conversation with my mother is no longer possible. Demanding it from her anyway would be like looking at someone who uses a wheelchair and saying, “Come on. Get up and run.” You can explain all day why you want the person to run, but the problem is not that the person isn’t trying hard enough.

The same is true in my home. When Mom’s words don’t make logical sense, I change the way I communicate instead of expecting her to change the way her brain works.

If she tells me her mother is somewhere in the house, I don’t tell her that her mother died decades ago. I don’t see any reason to make her experience that loss again just so I can be factually correct. Being right is not my goal.

Sometimes the person with dementia isn’t the one who needs to make more sense. The caregiver does.

Let the Repetition Become Part of the Conversation

My mother can say the same thing again and again and again. I let her. That doesn’t mean I answer every single time. If I tried to answer every repetition all day long, I would exhaust myself.

Instead, I let her talk and put a response into the rhythm every so often. She says something, says it again, and keeps going. I may answer one time, smile the next, or pick up one word she said and give it back to her. Sometimes I answer seriously and sometimes I say something silly.

I don’t try to stop the repetition. I put rhythm into it.

Once I stopped treating every repeated sentence as something I had to answer or fix, it became much easier to live with. Sometimes the repetition is simply part of the sound of our day.

Use the Nonsense

One of the most useful things I have learned from living with my mother’s dementia is to use what may sound like nonsense.

If her sentence makes no logical sense, I don’t always need to figure out what she was trying to say. I listen for something I can use. Maybe there is one word I recognize. I repeat it, change the tone, connect it to something else, or make something silly out of it. She gives me something back, I give her something else, and off we go.

If someone were listening only for the literal meaning, they might have no idea what we were talking about. Sometimes I don’t know either. But Mom and I are still responding to each other.

That is why I sometimes think of words as music instead of information. Music has rhythm, repetition, tone and timing. Our conversations can work that way too. Mom says something, I catch a word and throw it back, she responds, and the conversation keeps moving. It may not make logical sense, but it doesn’t have to.

The words don’t have to connect for us to connect.

Keep Talking

I sometimes hear people say there is no point in talking much to someone with advanced dementia because the person won’t remember the conversation anyway. That has never made sense to me. Mom doesn’t have to remember our conversation tomorrow for us to enjoy it today.

So I talk to her a lot. I talk while we eat, while we sit together, and as we move around the house. Sometimes she answers what I actually said. Sometimes she starts an entirely different conversation. Sometimes she repeats herself, and sometimes I grab one of her words and take us somewhere completely ridiculous.

I don’t test her memory or require her to stay on my subject. The conversation doesn’t have to accomplish anything.

Sometimes we just talk.

Humor Still Works in Our House

Not every interaction with dementia has to be serious. Sometimes I walk past Mom and suddenly ask, “What are you doing?” in an exaggerated voice. She reacts, I make a silly face, and she says something back. Sometimes I pretend I’m sneaking up on her and take off. She may come after me, pretending she’s going to get me.

And we laugh.

There is no therapeutic protocol behind it. We’re playing.

Sometimes play naturally gets Mom moving, talking and participating. But this is my mother, and I know her well. Something that makes her laugh could frighten or irritate another person with dementia, so I watch her reaction and follow her.

Dementia did not take away my mother’s ability to have fun. I don’t want every minute we spend together to feel like a caregiving task.

I Go Where She Is

I cannot bring my mother back to the reality I live in by explaining it harder. When I know what I’m seeing is part of her familiar dementia world, I meet her there.

That doesn’t mean every sudden hallucination, new confusion, or major behavioral change should automatically be dismissed as dementia. A sudden or unusual change can have another cause and may need medical attention. And if something Mom believes frightens her or puts her in danger, I focus on reassuring her and keeping her safe.

But ordinary life is different. I don’t spend it correcting a reality she can no longer consistently share with me.

After more than 12 years, Mom and I still talk all day. She talks, repeats herself, wanders into another subject, and I follow for a while. Sometimes I throw in another word. Sometimes we laugh. Then we move on to something else.

My mother has remained remarkably healthy through many years of dementia. I can’t say that talking, laughing, moving, going places and participating in family life is why, and I wouldn’t make that claim for someone else. But I do believe those things have been enormously important to her quality of life.

I never stopped talking to Mom just because her words stopped making sense. I stopped demanding logic and learned to communicate with what was still there.

Sometimes words are information. Sometimes they are music.

And sometimes the rhythm is enough.