“I’m going to stay here and care for her for a year because I know she wants to be in her own home as long as possible,” I said to my friend Kate shortly after I arrived back in Canada in October 2011. “After that she won’t know who I am anymore. She’ll go into a nursing home and it won’t matter if I’m around or not. Then I’ll go somewhere else and restart my life.”
“That’s crazy,” Kate said, “You won’t leave.”
“No it’s not, and yes I will,” I was unequivocal. But Kate was right and I was wrong. It was crazy; it got crazier; and I’m still here even though Mom’s gone.
My misguided beliefs about Alzheimer disease were based on ignorance. I learned a lot in the five years prior to Mom’s death in August 2016. I became intimately acquainted with dementia. I rode its roller coaster with Mom. I tore my hair out, cried in frustration, cracked, healed, broke into a million pieces and reassembled myself. I witnessed a beautiful friendship, experienced unconditional love, and found joy in the midst of despair. I observed, researched, listened, shared, and advocated. I got to know my mother and Alzheimer’s disease in surprising new ways. I completely changed my beliefs about dementia, those who have it, and how we should treat it and them.
I’m not alone in thinking our elder care needs to be overhauled. But change takes time, and unfortunately Mom’s ran out before my advocacy could impact her care. I did whatever I could to make the last years of her life as rich, full and joyful as they could be. That meant swimming against the tide, and getting in heaps of trouble. It pitted me against so-called “experts” operating on incorrect information and fallacious beliefs.
“I don’t believe (Mrs. Macaulay’s) present condition would allow it,” a social worker wrote in late 2013 in response to my repeated requests for weekly music therapy sessions for Mom. The social worker was 100% dead wrong. By the time I was made privy to her opinion, I had found Eric through a series of coincidences and hired him. I went ahead and did what I knew was right for Mom. Eric and I spent more than 50 magical musical hours with her. We sang hundreds of songs. We covered The Beatles, Herman’s Hermits, and Johnny Cash to name but a few.
Meanwhile, overwhelming evidence came to light demonstrating how music transforms the lives of people with Alzheimer’s disease. The wildly successful Alive Inside project shows the untold happiness music can generate in people who face cognitive difficulties. The health benefits of singing are equally proven. It’s gratifying that what I knew intuitively has been confirmed with verifiable facts on a large scale. But I’ve never felt the need for “expert” opinions, others’ evidence or research studies to prove what I can see and hear with my own eyes and ears – just like I don’t need advice from people who are ill informed. I trust my own judgment when the truth lies before me. And I don’t have a problem doing what’s right when I have been wrong.
The dramatic changes I personally observed in Mom during and after our music sessions still astound me: she was always engaged and energized by the process; she was more alert, more articulate and more aware for hours afterwards; she walked more confidently and was happier. Mom hadn’t said how she felt about the sessions, which she seemingly forgets the minute they’re over. I saw the immediate benefits, but I had no idea how profoundly she was impacted until one day, unprompted, she told me the things we did together helped her stay alive. It was crystal clear to me that she had a deep understanding of what was going on around her and how it affected her even though she sometimes appeared unaware. Perhaps it was my destiny that I should return to Canada to be Mom’s care partner. Maybe life brought me to where I’m meant to be. A more religious person might call it divine intervention.
How I label it really doesn’t matter. What I do with it does. I’ve learned a great deal, I’m thankful I have dismantled my erroneous beliefs, and I am committed to using my experience to help others. When a reasonable person finds irrefutable proof she’s wrong, there’s only one thing she can do: change her beliefs and #FightThe GoodFight. The right thing. That’s the thing I must do. It’s the thing we must all do.
A version of this post was originally published in January 2015; Mom died on August 17, 2016.