We are the Air in the Flute, the Paint on the Brush

We are just passengers on this train

In Lake Como, with my week-old Italian language skills, I got on a train heading the wrong direction. My companion and I were in the snow-covered Alps, and I went to the hallway to find someone who spoke English.

“Milan is the next stop?” I asked.

“No, Lucerne, Switzerland,” was the response.

When I returned to my seat, we were in another tunnel. Tunnels and mountains, that was my memory. When we stopped, I exchanged my euros for Swiss francs, bought sandwiches, and went to the other side of the platform for the train to Milan. I had always wanted to go to Switzerland, and this was my brief experience.

Tunnels and mountains — that is my experience now, six months after the MRI of the white matter of my brain. The days go by quickly, and a trip to the grocery store or taking the recycling out feels like a major achievement. I have stopped traveling far, as I get lost. Directions have never been my strong suit. Following a GPS map can be confusing.

I like getting lost in a great story, whether it comes from a book I listen to, a streaming service, or other people’s lives, like stories on Medium.

Writing and verbal skills

I am back from a writing workshop. I rode with a friend, and I enjoyed the camaraderie with curious, bright people. Writing works for me. I can look up words I can’t remember and edit what needs improvement. My writing is strong, according to the workshop feedback.

I have read that our strengths persist. Vocabulary may persist for me longer than, say, an accountant’s. Numbers for me are hopeless. I communicate the wrong dates and times. I may need help with finances sooner rather than later.

I am a bit of an elitist when it comes to selecting a future support community, but maybe at some point I will aspire to Bingo.

Can you be an elitist and be looking for future memory care?

Frustration is my most common emotion. I am frustrated when I get dates or times wrong with friends or family. One friend has abandoned me, and I get it that I am not a reliable companion anymore, and I have shrunk my world. One old friend flew out to visit me, and we laughed and remembered our schoolgirl years as we visited new places here. She drove.

I have wondered if I lose my memories, what will be left of me? But I do believe in the soul, that ineffable part of ourselves that is ourselves, that part that is the paint on the brush, the air in the flute, the passenger on the train.

I have been watching documentaries or listening to biographies about artists. I think some magic visits the act of creation. Sparkles that create the glittering mosaic.

The writer’s workshop on the lyric essay taught me about mosaics, braids, and holes. I embrace holes. I joked that I could watch the same movie on a streaming service with a fresh viewpoint. Then I recently did just that, and by the end, I decided I had already watched the movie. I remembered little of the plot, but I seemed to know what would happen. My son says he has done something similar, but it is the accumulation of little losses, the reality of the doctor visits, that makes my diagnosis real.

On the other hand, I have not lost any ground. I am stable.

But we don’t know; we never know.

I have a new, paid friend. My son arranged, I think, a brilliant friendship with someone he knew who was interesting, multi-faceted, and about my age. He is married and has learned the patience relationships require. It is a paid friendship because he is getting to know me now, and I am getting to know him, before my memory fades, so he will be familiar to me later. We can laugh at slips and forgetfulness, and if I only learn that, it will be time well spent.

Questions

So what are people who care to take from my early-stage learnings?

1. Don’t abandon people as they inevitably start to change with memory loss. Be patient. Your presence means more at this point, even if it is silently watching a movie together.
2. Driving someone somewhere simple can be a gift — a garden shop, a ride to a favorite park, whatever — when the person can no longer drive.
3. Lean into spirituality, however that manifests in a person’s life — the Universe, nature, God.
4. Prepare for the future, like hiring a companion. Mourn the little losses when they happen. A third person helps, stays objective, and isn’t a caregiver or family member.
5. Cognitive impairment is not just about memories. It’s judgment, physical stability, and your body in space. Skills can become even more uneven. Don’t be fooled by someone who can fake it.
6. Please don’t recommend a particular vitamin regimen, a new exercise plan, a website by an expert neurologist, or jigsaw puzzles. Are you trying to delay onset because that is what you would wish? Frankly, “it is what it is” helps more.
7. Have a sense of humor — address the problem straight on; don’t pretend it isn’t there. My friend apologized for being late. I told him he’s lucky that I forget.
8. I have good days and bad days, which seems to depend on how well I slept.

I have looked up many gadgets that will help with safety and forgetfulness. I have a big calendar whiteboard now, and am buying things like a coffee maker with automatic shutoff. I have my legal paperwork in order.

Accepting help and giving up control is difficult. It is also inevitable. For some of us, it is the hardest task of aging. I rail against those who stubbornly keep living in houses built for a family of five, not a single person who can’t keep up with yard work and housekeeping.

I have visited a 90-year-old friend who doesn’t want to be alone, but won’t give up her house. I’ll keep visiting, keep hinting. We each have our own timeline, and we don’t know what it will be.

Hopefully we will make the choice of our own volition. All our choices.