noise – My Alzheimer's Story

stand up for better care

October 22, 2017May 1, 2019 My Alzheimer's Story

During the last two years of her life, after she was made to sit in a wheelchair (despite the fact that she was still able to walk), I didn’t know if my mom had been given the opportunity to stand up and walk on the days I wasn’t able to go to “ElderJail” to help her.

I visited virtually every day to ensure she got some exercise. But on rare occasions, I had to miss a day or two. When that happened, it was harder for her to get to her feet when I returned because (I guessed) no one had helped her to do so when I wasn’t there.

Mom was still able to walk, but she was confined to a wheelchair for “safety” (read: convenience)

It broke my heart to find Mom frustrated, pulling herself along using either a railing (where the hall was wide enough for railings), or her hands (where it was narrow), to get from one end of the building to the other – a distance of about 125 feet, after which she would come to a dead end, turn around and pull herself back again.

No wonder she got agitated. No wonder she wanted to stand up and walk. No wonder she was sometimes in a bad mood. I would have been too!

Imagine what it might feel like. How long could you sit in one place with nothing to do without getting “fidgety?” I asked people that very question in a Short Survey on Behaviour. Guess what? More than 80% say they would become restless in less than 40 minutes.

Yet many LTCFs (including the one my mom was in) expect people to sit quietly with nothing to do for hours on end, and when they don’t, they get labeled “agitated” or “anxious” and in need of being sedated.

Q: How long could you sit in a chair with nothing to do before you would feel restless, want to get up or start to fidget?

Despite everything they did in #DementiaJail to discourage my mom from standing up and walking, it didn’t stop her from believing in herself. When I went to see her on September 27, 2015, her 87th birthday (listen below), she was in good spirits, and ready to try standing up “for God’s sake!”

Her courage continues to inspire me to#StandUpForBetterCare. Because what we have now just isn’t good enough.

This video is part of a series extracted from a care conversation with my writer friend Lorrie B. “I’m keen for others to know the reality of my mother’s and my experience of long-term ‘care, and you’re the perfect one to help me do it,” I told Lorrie on Mom’s birthday in 2017.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!). The other posts in the series are here:

https://myalzheimersstory.com/2017/10/09/how-my-moms-affection-got-mislabelled-aggression/

https://myalzheimersstory.com/2017/10/02/loud-sounds-and-dementia-mostly-dont-mix/

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Challenges & Solutions, Toward better care, Videos

how my mom’s affection got mislabelled “aggression”

October 9, 2017May 19, 2018 My Alzheimer's Story

My mom had an unflaggingly positive attitude, as you will hear in the video at the end of this post. It features an audio clip I recorded on Mom’s 87th birthday in 2015; the last one we would have together. When I suggested to Mom that she needed a new sweater because the one she had on was moth eaten, she responded “It’s getting better.”

Everything was always “getting better” as far as Mom was concerned.

She was also outgoing, friendly, interested, engaging, and invariably the life of the party. She adored people, and was highly socially adept. So how did she come to be labelled “violent” and “aggressive” after she moved into a long-term care facility? There was a cluster of reasons, none of which were here fault, nor the fault of dementia. Ironically, one of the reasons was love.

Mom had a habit of giving people what she called “love taps,” light, rapid-fire pats on the hand, arm, cheek, bottom, or whatever recipient body part happened to be in close enough for her to reach. She had done this, as a sign of affection, for as long as I can remember. As her Alzheimer evolved, and her ability to verbally articulate her emotions declined, “love taps” and clapping often replaced words. She used them to express delight, happiness, frustration, and displeasure.

Unfortunately, her love taps and clapping were sometimes not well received, particularly (and understandably), by other residents who lived with dementia, and who didn’t “get” what these “slaps” were about.

But the staff should have known better. Sadly, instead of looking at the meaning of the behaviour, they labeled it “violent” and “aggressive,” and, as a result, Mom was medicated with dangerous and debilitating antipsychotic drugs.

I think that’s abuse. What do you think?

20 questions that help explain why people with dementia get agitated and physically aggressive

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Image copyright: lonely11 / 123RF Stock Photo

Advocacy, Toward better care

loud sounds and dementia mostly don’t mix

October 2, 2017October 3, 2017 My Alzheimer's Story

“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 89^th 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 87^th 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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