People with dementia are some of the bravest people I have ever known. Both my mom and dad succumbed to Alzheimer, and I've been thinking about their courage as they moved through the disease process, prompted by father's birthday on March 23. He would have been 91.
My wife Pat and I try to keep reminders around my house of the heroic way he went through it. In his prime, he was a skilled woodworker, spending sometimes hours a day in his shop making tables, chairs, frames, and lots of 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, and he showed a gritty determination to continue to build and create stuff all the way to the end. While some of his family were saddened by this, I ended up finding it inspiring and uplifting, almost celebratory in what he was doing. There are two examples which Pat and I look at every day in our house that capture this spirit. One is a birdhouse that he put together from a kit, late in his dementia. It's hilarious, and so creative! He apparently had another kit, and he ended up combining them, with the result of an oddly shaped structure with two roofs, one glued on top of the other, with peace signs and other stickers placed all over the wildly painted exterior. To think of him making this through the fog of is dementia just seems so moving. What a testament to the strength of humans, to continue to create even in the midst of such a decline.
The other is a fort that he put together from a kit. It was designed just to stack pieces on top of each other, kind of a Lincoln Log thing for those alive in the 50s. But he always had a love of glue in his woodwork, and could do amazing things with Elmer's glue. Early in the construction of the fort, he kind of stood over me and directed me to put certain things in certain places. He seemed to have a particular plan in mind, and he would look on intently, coaching me to "move it up there just a little... right there, perfect!" And then we'd glue it down.
After I helped him get the foundation going, he took over on his own, and using his focus on glue with glee, he created a wild structure, with stairs leading to nowhere, asymmetrical little rooms, and a welcome sign on the front. The result provides me with a smile every single day I see it in my bedroom.
My mom's courage had a little different shape. She wasn't really into crafts like he was. Her courage showed up in her behavior. Her decline was pretty fast, although like many families, we looked away during the early stages, denying what we really probably knew at some level.
When she first moved to a nursing home, she was really upset at the beginning, but in a matter of days she showed the spark that led her through a life full of social graces. 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 facilities dining room. It was a small place in a small town, and the dining room had a large round family-style dining table, where she sat with about ten other patients, most of them not able to speak or communicate well. When I joined her at the table, she leapt to her feet, and in the same way someone would introduce the Queen of England to guests, she said "everybody, I would like to introduce you to my son Jim Anderson!" The same Jim Anderson who had brought her here just a day or two earlier, much to her chagrin. To have such grace and forgiveness in such circumstances reflected an immense amount of bravery.
Later she would spend some time in a geriatric psych unit, where patients like her would often go for brief periods in hopes of making order of sometimes unruly medication regimens. This was late in her dementia, and at this point she was having great difficulty communicating, with occasional and brief interludes of alertness. One of the nights she stayed there, my wife and I visited, and she was in bed, just lying there, looking not very human, just flat and detached. I sat on the bed next to her and stroked her hair, and said "Mom, I'm really, really sorry about all of this." There was a pause and then she appeared to rally 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 are seeing and thinking then. Maybe nothing, maybe something, but I like to think they see colors and favorite pets, 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.