I attended a special gathering last week of an acquaintance and her husband’s sharing of their journey with Alzheimer’s disease. The husband was diagnosed with the disease about two years ago, and the couple wanted to share their experience with their community. The gathering was announced, and I decided to go, hoping to re-connect with the friend and introduce myself to the husband. The event was very well attended, and I did not get a chance to talk to either of them. There were several other people in attendance who are part of the Alzheimer’s community, so it was good to reconnect with them.
Several things struck me about this program. First, the willingness of both husband and wife to be transparent about their journey so far. The husband discussed that he felt it was important to talk about his experiences to demystify and normalize the diagnosis. “I am still me.” I was moved by this gentleman’s grace and vulnerability. There was a time early in my husband, Harvey’s, diagnosis that I wished he would speak and advocate for others like him. It just wasn’t in his nature to do so, and I let it drop.
There were many similarities between our story and theirs. The getting turned around in unfamiliar places, the asking “have we been here before?,” the repeated questions, the slower pace of conversation and of life. Yet, the wife quoted one of my favorite quotes, also one of the chapter titles in Surfing the Waves of Alzheimer’s, “If you’ve seen one person with Alzheimer’s, you’ve seen one person with Alzheimer’s.” As similar as parts of our stories are, the two are still distinctly individual stories, just as the two men are distinctly individual people.
The couple also shared what they see as gifts of this diagnosis, sentiments that I share as well. For one, learning to live in the moment, mindfully, because that’s all there is, especially as the disease progresses. They also emphasized community and how that strengthens them going forward. Because they have both been rooted and grounded in their faiths, there has been no faith crisis or anger with the Divine. They know that they are not alone, that the Divine is always there walking alongside them. These are three points that I learned and leaned on throughout Harvey’s time with Alzheimer’s disease.
I also has some unexpected reactions. Harvey was diagnosed in 2020, fifteen years ago. Yet, as the couple began sharing their account of life with Alzheimer’s, it all came back to me, and it hit me hard. I had thought that I was “over it.” Ha! Does one ever get over something of this magnitude? I had fooled myself into thinking so.
As I’ve pondered this experience for myself and my reactions, I am starting to wonder if writing the memoir and speaking to groups about dementia was a way to shield myself. If I was in control, at my computer or at a lectern, then the disease and the experience didn’t control me. By sharing our story and being the “expert,” I didn’t have to confront my own grief as deeply. When I put words around what I was feeling, it had a way of sheltering me. Too, having told our story so many times, the emotionality of it for me has lessened.
Yet, when someone else shared their story from their hearts, with evident tears, my own heart cracked open. I am indebted to this couple for that.
Interestingly, this couple are neighbors of mine. I have seen them walking their dog while I have been out on my morning strolls. Just last week, I crossed paths with the husband. I stopped him, introduced myself, and thanked him for sharing his story. I hope to continue to walk with them both if they desire it.