Advocacy, Toward better care

loud sounds and dementia mostly don’t mix

“I would not want my mother sitting in a room with loud music and TVs blaring,” my writer friend Lorrie B. said in a zoom conversation on what would have been my mother’s 89th birthday.

I didn’t want that either. But that’s how I found my mom almost every afternoon for the last eighteen months of her life. Most often, she was oblivious to the noise because she had been sedated into a catatonic state.

I had become a thorn in everyone’s side by advocating for better care and less medication, and my visiting “privileges” were meant to be confined to between one and three in the afternoon when Mom was usually “asleep.” But I stretched the rules and arrived more towards 2 p.m. so I had a better chance of having some “awake time” between 3 p.m. and 4 p.m. On her 87th birthday, I made an audio recording of the visit for posterity.

A little over a year after Mom died, I invited Lorrie to listen to the recording with me, and to tell me her thoughts with a view to sharing them and our conversation with as many people as possible.

“I’m keen for others to know the reality of my mother’s and my experience of long-term ‘care,'” I told her. “And you’re the perfect one to help me do it.”

At this point, Lorrie had been the primary care partner to her own parents for three years, and they were still in their own home. She also had (and still has) her own blog called Unforgettable (I wish I were half the writer she is), which I highly recommend following (I do!).

I plan on releasing more of our conversation in the coming days and weeks, (or maybe months at my snail’s pace), but for now, let’s start where Lorrie and I started – at the beginning of the visit.

Part of this clip is also in my birthday post honouring my mom here, during which I sang Happy Birthday to her. I invite you to read about the rest of our magical last birthday afternoon together here and here.

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Image copyright: hellbilly / 123RF Stock Photo

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