I keep a list of topics that I want to write about next to my computer. Recently one topic caught my eye: Write about what/when/how to visit with someone who has dementia—from my perspective and experience.
In some ways this topic is an ongoing, ever changing learning experience, as COVID isolation and social distancing is an ever present and evolving practice. For someone like me with memory challenges, conversing and socializing has its own unique issues and concerns. One of the suggestions and urging from the medical community is “don’t isolate”…yet that is the exact opposite of what we are told to due during this pandemic.
In addition to struggling with the balance between necessary socializing and necessary distance, I also question my emotions and stamina. Do I really want visitors? Do I want people to see me “like this”? What is there to talk about when I don’t get out of the house and my memory is faulty?
I also recognize the hesitancy people have of conversing with me—like not knowing how capable I am. In some relationships, I’m aware that I might seem different to the other person if time has passed since we last saw one another. My son (the scientist I’ve mentioned before) is coming to visit me from his home in Boston. I can’t recall exactly when our last visit was, but I do know my memory loss has increased since I last saw him in person. And because I know how much he cares about me, I know he will be concerned and saddened by the changes.
But this post is not solely about one visit. It encompasses all in-person visits from family and friends. I realize these loved ones care about my health and well-being, nevertheless I sense hesitancies on their behalf, such as: “What topics are of interest to Virginia? Should I speak more slowly or loudly? Is Virginia capable of understanding and discussing current events—like the election, the virus, the recent rioting, or controversies over mask wearing and social distancing?”
The topic of dementia isn’t often brought up, so I bring it up when it is relevant to a conversation or a relationship—because I’m comfortable talking about my experience of living with dementia. In fact, I really appreciate when people ask me questions about how I cope, what is my current emotional state, and how I fill my day. These questions tell me they want to understand. I’ll answer that I still write, read novels (but I have to do so daily, or I forget details), I zoom with my college friends, talk with my children and grandchildren. The most special calls are zooming with my nephew, niece, and their four-year-old daughter, who live in Estonia and thus share very interesting conversations.
In turn, I encourage my loved ones to tell me about their lives and what the children and grandchildren are doing, exploring, or creating. I love to get suggestions for books, online games and TV shows, or when possible to join me on distanced walks.
Often, I notice others speak slowly and louder than normal. When this happens I gently tell them my hearing is just fine and I can follow a normal rate of speech. I do, however, suggest they ask me one question at a time and accept me not answering if I say “I’ll have to think about for awhile.”
In essence, I want my family and friends to focus on what still remains of “me.” When I say I don’t remember some name, place or activity, I don’t want them to apologize—I simply want them to accept my reality of not knowing, and tell me more.
Dementia is a new experience for me, but also for my family and friends. I don’t shy away from talking about my condition, nor am I ashamed. I certainly don’t want those who love me to be afraid of saying something wrong.
It is their visits, calls, and letters that remind me I’m loved and cared about.