perspective – My Alzheimer's Story

I love the quote from the “old man” towards the end of the video below. He says:

“When people start stopping, that’s when they start getting old.”

I think the same principle applies to people who live with dementia. I also believe that by “getting to know” people who live with dementia, and understanding who they really are, we can change the negative narrative associated with Alzheimer’s disease and related dementias (ADRD) as well as those who live with diseases that cause dementia.

We need to think differently about what it means to live with ADRD, just like the young people in the video change their thinking about what “old” is by experiencing what “old” people can do, and also by learning from them.

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On August 25, 2011, I spotted the full arc of an exceptionally brilliant rainbow stretching north/south over the field across from Mom’s big red brick house on the hill. I grabbed my iPhone and Mom’s hand, and we crossed the road to get a better view. But rainbows are fleeting and in the short time all of this took, the rainbow had begun to fade. Still, traces remained in the misty clouds, and we admired its spectacular beauty while it dissolved into the afternoon sky.

Mom, who had a lovely voice, started to sing; she knew the words to literally hundreds of songs. Somewhere Over the Rainbow was one of her favourites; we sang it together dozens and dozens of times over the next five years. Strangely, she invariably substituted “never” for “really” in the verse about dreams coming true.

I’m grateful to have recorded many of the roller coaster moment Mom and shared during our last decade together. I filmed the two videos below in August, 2015, and June 2016, when Mom was accompanied by our friend and healing music master Eric Manolson on piano and guitar, respectively. In April 2016, Mom’s eyes began doing odd things. When she concentrated hard on speaking or singing, they crossed and locked, and then sprang back to normal when she softened her focus. I asked her if it hurt. She said no. She knew if and when she was in pain. She also recognized and felt joy and love.

Some people might look these videos and say “How sad. See how she deteriorated? See how the disease ravaged her mind? She’s just a shell of who she was. What a shame. What a tragedy.”

I see something different–something beyond that.

When I look at these videos, and the changes in Mom over time, I say to myself: “See how she loved to sing, and she sang until the very end? See how she appreciated beauty, engaged life, smiled, laughed, interacted with others, and expressed joy and pleasure despite living with dementia? See her courage, her determination, her ferocity, and her indomitable spirit, which people failed to crush, even with deadly drugs? See how she was not defined by Alzheimer’s disease?” These are the things I see.

I am inspired by how Mom made the most of her circumstances, no matter what they were. Aphasia may have prevented her from articulating her thoughts in ways that were understandable to others. But I understood her. She may have been confined to a wheelchair most of her last year, but I helped her walk a little bit every day. Her brain may have been damaged beyond repair, but I believe it was able to compensate in small ways for the overwhelming losses in capacity. Even as the disease evolved, Mom was more herself than ever: I saw her clearly. I witnessed her journey, and I will continue to honour it and her by telling her story. What a blessing. What an opportunity.

She’s not physically close like she used to be, but thanks to music, love and connection, I will always know where to find her.