Advocacy, Real life, Toward better care

jillian jiggs and a mind of her own: july 27, 2016

Mom had an irrepressible spirit coupled with an extraordinarily strong will to live. When I was six years old, she came close to death as the result of a pulmonary embolism caused by a miscarriage; she spent many months in the hospital.

So it wasn’t surprising that she was much improved when I arrived to visit the day after her “seizure,” despite being bruised and battered. Her right arm looked particularly bad — it was completely black and blue — but she was calm, and far more articulate than she had been 24 hours earlier.

I found her favourite book, Jillian Jiggs, and asked if she would like me to read her a story:

It occurs to me as I write this that Mom may have been such a big fan of Jillian Jiggs because, from all accounts, she was just like the book’s heroine as a child: red hair, energetic, enthusiastic, creative, positive, confident, mischievous and full of fun. She retained all of those traits, even in the last days and weeks of her life, even under the most difficult circumstances:

As we neared the end of Jillian Jiggs, a nurse came in to check Mom’s oxygen levels. When she found they were down, Mom made it clear she wasn’t happy with the prospect of having plastic tubes stuck up her nose. One only has to listen to her words and tone to know that, while she may not have understood the complexities of what was going on, she knew very well what she didn’t like:

Exchanges like these are undeniable evidence that Mom had an excellent grasp of much of what was happening around her — she could process a lot more than she was given credit for. This is why I believe we need to completely rethink the way we see and treat people who live with dementia.

We talked lots during the next hour, though Mom’s speech was greatly impaired by her aphasia and the trauma she had suffered. I applied moisturizer to her hands, and we sang “When you wore a tulip” again (this time with more gusto in the delivery than the day before):

I left her side that afternoon feeling hopeful.

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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