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.
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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My Alzheimer's Story 