The bravery of people with dementia
Facing dementia with strength and courage can inspire and comfort patients' families.
People with dementia are some of the bravest people I have ever known. Both my mom and dad succumbed to Alzheimer's disease, and lately I've been thinking about their courage as they moved through the disease process.
My father's birthday was on March 23rd – he would have been 91 years old. In his prime, he was a skilled woodworker, sometimes spending hours a day in his shop making tables, chairs, frames, and decorative novelty items. He loved to give away his work, and I think he also loved the time alone to create and reflect. As he got sicker, his work changed dramatically, moving toward a more crude style. He knew he was changing – that his brain was wearing out – but he showed a gritty determination to continue to build and create to the end. While some of his family was saddened by this, I found it inspiring and uplifting, almost celebratory.
My wife Pat and I try to keep reminders around the house of the heroic way my dad worked through the disease. There are 2 examples that Pat and I look at every day that capture this spirit. One is a birdhouse that he put together from a kit. It's hilarious, and so creative! He had another kit, and he ended up combining them, the result an oddly shaped structure with two roofs – one glued on top of the other – with peace signs and stickers all over the wildly painted exterior. To think of him making this through the fog of his dementia is so moving. What a testament to the strength of humans, to continue to create even in the midst of such a decline.
The other reminder we have is a fort he put together. It was designed with pieces meant to stack on top of each other, like Lincoln Logs. But, my dad always loved to use glue in his woodwork, and could do amazing things with Elmer's. Early in the construction of the fort, he stood over me and directed me to put certain pieces in certain places. He seemed to have a particular plan in mind, and he would look on intently, coaching me.
“Move it up there just a little… right there, perfect!” he'd say. And then we'd glue it down.
After I helped him with the foundation, he took over on his own. Focusing on the glue with glee, he created a wild structure, complete with stairs leading to nowhere, asymmetrical little rooms, and a welcome sign on the front. The result makes me smile every single day I see it in my bedroom.
My dad's birdhouse.
My mom's courage took a different form. She wasn't really into crafts like my dad was; her courage showed in her behavior. Her decline was pretty fast, although like many families we looked away during the early stages, denying what we probably knew at some level.
When she first moved to a nursing home, she was upset. But in a matter of days, she had a renewed spark – the same spark that had led her through life. I went to visit her soon after she had moved in to the nursing home, and was invited to join her for a meal in the facility's dining room. It was a small nursing home in a small town, and the dining room had a large round family-style dining table where she sat with about 10 other patients, most of them unable to speak or communicate. When I joined her at the table, she leapt to her feet in the same way that someone would introduce the Queen of England to guests.
“Everybody, I would like to introduce you to my son Jim Anderson!” she said – the same Jim Anderson who, much to her chagrin, had brought her here just a few days earlier. To have such grace and forgiveness in such circumstances reflected an immense amount of bravery.
Later, she would spend some time in a geriatric psychiatry unit, where patients like her would often go for brief periods. This was late in her dementia; at this point, she was having great difficulty communicating, although there were occasional, brief interludes of alertness. One of the nights my wife and I visited, Mom was lying in bed, not looking very human – just flat and detached. I sat on the bed next to her and stroked her hair.
“Mom, I'm really, really sorry about all of this,” I said. There was a pause and then she rallied some amazing energy, from out of nowhere. She looked right at me, smiled softly, shrugged, and said with smiling resignation, “Well, what can ya do?” Then she drifted back away to wherever people with dementia go.
Who knows what they were seeing and thinking? Maybe nothing, maybe something, but I like to think they see colors, hear music, and see a pastiche of all the things, people, and pets that they have loved. I hope I have the same courage as I move through the inevitable end, the courage to urgently create in the face of loss, the courage to comfort others even when they are struggling.
Jim Anderson, MPAS, PA-C, ATC, DFAAPA, is a physician assistant in Seattle.