Hopefulness in Dementia Care (Part Two) It Depends on How You Look at It.

April 19, 2018

 

 

There are serious changes that can occur on the journey of aging, such as dementia. For those who experience this, either directly or in proximity to a loved one, it can be hard to encounter the common belief that nothing can be done for these travellers, except to feed and house them. It can feel like an immediate death sentence, as if the journey is over.

However, this is far from the truth. Medications can now maintain a person’s level of functioning for years. And, even as the disease progresses, environmental and interpersonal interventions can assist you to maintain dignity and communication— long into the disease. No one would dispute that dementia is an insidious and devastating condition. However, need it end my journey or the journey of a loved one, or someone in my care as a fellow traveller? The following examples illustrate the contrast between an outside view of this kind of change and the inside view of aging as a journey to life.

 

At Christmas some years ago, I went to Montreal to visit my aunt Mary, who was living in a special care home. At one point during the visit, I asked the owner of the home if we could take a photo of my aunt near the Christmas tree in the living room. But near the tree was an older lady sitting in a wheelchair with her head down, working her fingers with some wool that was wrapped around the arm of the wheelchair.

 

“Oh, just move her away,” said the owner. “She’s crazy and doesn’t know where she is or what she is doing.” 

 

Out of respect for this lady, I approached her and asked if it was okay to move her. When there was no response, we did so. We took our pictures with my aunt and eventually completed our visit. When I was leaving I decided to wish all the residents a Merry Christmas and shake their hands. I approached the woman we had relocated from the tree, offered my hand, and said, “Merry Christmas to you.” She looked up into my eyes and clearly said, “The same to you and to your family.”

 

I left the home almost in tears and in a moral quandary. I wondered if I should tell the owner that she did not know how to care for these travellers. Will that help, I asked myself, or will it result in worse care for both my aunt and the older person by the tree? This woman was in a setting that made it difficult to find her journey to life with a measure of stillness and peace, as she was being treated from an outside, ageist perspective.

 

This encounter with the lady by the Christmas tree showed me that when we encounter others in this way—looking at the inside rather than just the outside—our own journey is affirmed by life as well. As the spiritual teacher Jean Vanier once said, you begin by thinking that you are helping others, and you realize later that they are a gift to you.

 

Bob and Leo

 

Early dementia survivors (as opposed to victims) show us how it is possible to find meaning in the face of severe challenges on the journey to life. Here are two further examples:

 

Bob was a guest lecturer in my Introduction to Gerontology class. After having survived the shock of diagnosis and early problems with medication, he began to volunteer through the local Alzheimer Soc