Advocacy, Real life, Toward better care

“good pleasure” #lastmonthwithmymom 16/07/16

July 17, 2018: One month from today, August 17, 2018, will be the second anniversary of Mom’s death. I’m looking back at our last weeks together with joy, sadness, anger, gratitude and bittersweet grief. I intend to share some of my feelings, observations and experiences of that time two years ago over the next four weeks.


I found Mom in a deep sedated slumber on the afternoon of July 15, 2016, so I left without attempting to wake her. The next day, the sixteenth, I decided to flout the time restrictions that had been placed on me (as I often did), and got there at 3 p.m. (when I should have been leaving instead of arriving). I knew the chances were good that Mom would be awake at that time. I was right. She was awake; and she was delighted to see me:

I was still concerned about the wound on her leg and the dressing they had put on it, but I didn’t make much of it, because I didn’t want to upset Mom. Rather, since she was so up and energized, I chose to make the most of the afternoon.

Mom loved the time we spent together, it’s clear from the sound of her voice. To deny her that joy when she had so few pleasures, and when her world had become so small, was cruel and abusive beyond measure, particularly as the arbitrary rule was nothing more than an exercise in power and control by the administrators of Mom’s Dementia Jail and the person who was in legal control of her care.

Mom and I extracted good from the evil that was wrought upon us. These are snippets from the rest of our afternoon on July 16, 2016:

Some people might mistakenly believe that this kind of play is infantalizing. Or they might think it sad that Mom couldn’t do all the things she once could. I thought it best to generate as much positive energy and happiness as I could, and I did whatever it took to do that, especially as most days I found her like this because of the inappropriately prescribed antipsychotics:

I knew the things we did together made Mom happy because she often told me so in her words, actions and expressions just as she did at the end of our afternoon on July 16, 2016:

The sound of the beeping and You Are My Sunshine playing is the pressure sensitive alarm pad on her wheelchair seat going off and being reset when Mom stood up and then sat down again – another form of physical restraint. The tapping and clapping was Mom’s way to express love, approval, energy and happiness; she was discouraged from doing it by the staff and nurses and it was sometimes interpreted as “aggression,” a label which was then used to justify her being medicated.

During the last five years of her life, Mom inspired me with her spirit, love of life, courage and determination. I’m grateful for the extra time we were able to spend together, which was a direct result of Alzheimer disease. It was a silver lining that so many people miss. We created joy, healing and “good pleasure” amidst the hardship and challenges. We were lucky. Too many people living with dementia are left to die long before they’re dead.

Do you have a family member, friend, or someone you know in long-term care? Have you seen neglect and abuse firsthand? If so, please speak out against these human rights violations, and find ways to create joy amidst the tragedy.

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