Maisie leaned on her tip-toes to peek out the window at the top of the door. A tiny bird of a woman, she clung to her walker for balance. Thin grey hair, heavy brogues and tartan skirt and jacket, she presented the perfect picture of an elderly Scottish lady out for a stroll. She was all those things, but the stroll had ended at this door because it was locked. She peered, then rattled with all her might, then peered again. It didn’t open and that didn’t seem right.
It was my first day. In fact, I hadn’t been officially hired yet. The snowstorm of 1999 (the infamous one where the mayor called in the army) had kept me from going into Toronto for my interview, and it had taken place over dinner in a Swiss Chalet near home. Now several days later, I’d gone in to see my new place of business and sign paperwork.
I knew so little. Over the next many years, Maisie and Florence and Margaret and Jean and Garnett and Jim and so many others taught me lessons that stay with me today and drive the passion I have for eldercare, especially for those who walk with dementia.
June is Alzheimer’s and Brain Awareness month. I want to share some stories this month from some of the wonderful people who taught me so much, just by being themselves. People with dementia are not “sad and sick and lost” with ‘the best of me gone.” 1 as a poem that frequently circulates the internet describes. Although they have a disease, they can live lives of purpose and make a difference in your life. They have wisdom which they aren’t afraid to impart.
However, it may not come to you in the traditional way. You have to listen.
As Maisie shook that door, she was telling us that doors should be open. It wasn’t locked for malicious reasons. The understanding at the time was that people with dementia were best served living in an area with other people with the same disease, with a staff designated to help them. Behind a closed door which kept them safe. As Maya Angelo said, “Do the best you can until you know better. Then when you know better, do better.” 2 That’s what we knew to do at the time.
Many years later, someone asked, “What would happen if we opened the doors?” We held meetings discussing, “If this or that happens, what will we do?” Then one morning, with everyone on high alert, we opened the doors.
Most people stayed where they were. A few wandered down the hall and then returned. Some wandered into others rooms, but that happened on the other side of the door as well. Friendly staff redirected them. We learned from Maisie and those who came after her that a locked door within the building wasn’t needed. That people with dementia could live with those who didn’t have the disease.
As Alzheimer’s and other dementias are the focus this month, let’s all watch and listen and learn what our elders with dementia are telling us.
They are still present, they have life and love, purpose and wisdom to share.
If we listen.
- From “Do Not Ask Me To Remember” https://www.alzheimers.net/do-not-ask-me-to-remember-poem
- https://www.goodreads.com/author/quotes/3503.Maya_Angelou