While caring for my husband with Alzheimer’s, painting gave me my own precious world

As Nicole told Audrey Spector

I knew my husband, Bob, had Alzheimer’s before anyone else, including Bob. He was only 65, but had some tell-tale symptoms, including forgetfulness and fainting, that were very unusual for him. Bob was whip smart and incredibly high functioning, a former journalist. But the bills he was running that we had the funds to pay were starting to pile up. Something was wrong. And having studied Alzheimer’s disease during my career as a women’s health researcher, I knew all too well how the disease can strike.

Bob went to a neurologist and was told everything was fine, that his symptoms were a normal part of aging. But I knew the neurologist was wrong.

Around this time, I happened to post a women’s health panel featuring a doctor who was an Alzheimer’s expert. I made an appointment for Bob with this doctor and we quickly received the scary but accurate diagnosis of Alzheimer’s disease.

Bob was fine for several years after his diagnosis. Not great, but good enough to travel with me and live a somewhat normal life, though not on my own, I was always there for him. But he deteriorated, as Alzheimer’s always do, and eventually it was time to move him to a memory care facility; a difficult decision if ever there was one, but one I felt was best for Bob’s health and overall well-being.

Bob stayed in the facility for a while, but I wasn’t happy with his quality of life there. In the end, I decided he would be best at home with me and a train of “round the clock carers”.

Maybe it was my husband’s dead body in the house with me, but the man in the house was not my husband. Bob was long gone by then. This man was a pitted, cracked shell of my husband. He didn’t even really look like Bob. Not really. The intellectual gleam of the eye, the solid, familiar gleam of the mind, was obliterated. The waist-length smile, the self-assured demeanor, the ability to relax effortlessly… all erased like an old example in one of his stories that never made it to print.

I occupied the top floor of a four-room house, while Bob and the caretakers took the bottom floor. Although I was never alone, and I had plenty to keep me busy between work and my social life, there was a loneliness and gnawing guilt mixed with a kind of sadness in my days. Bob was still alive, but I missed him and sometimes resented the helpless, crazy man he had become. And then I felt bad about it, because of course he was an innocent victim in all of this.

I lived in a constant state of mind watching Bob go down, but there was something that helped me slide and I didn’t even really know it at the time.

I have always loved to paint and in Bob’s declining years I was deeply drawn to canvas. Painting gave me a sense of focus and drive that had nothing to do with my work, personal life, or Bob. It was completely creative and self-motivated and gave me tunnel vision in the best sense of the term. Painting blocked out the rest of the world and gave me a launch pad for the mornings. Often the first thing I would think about when I woke up was how I would continue the painting I had left off the day before.

While Bob was dying (because really, that’s what was happening during those 15 brutal years he was skating), I was spending most of my free time making art. Since Bob passed away in March 2022, I have continued to paint and even sell some of my work.

Right now I’m in a bit of a mess with painting and my grief. Work is good. Friends are good. I have a new book coming out and other exciting things on the horizon. I have things to look forward to. I know this. But my best friend, who happened to be my husband of 50 years, passed away. He died a horrible death and I watched every agonizing second of it. There’s no way to sugarcoat it, or the fact that the last dozen years of our life together have been filled with trauma, despair, and the brutal madness that Alzheimer’s brings.

There is a painting I started in my kitchen. That’s one I’m in trouble with. I can’t miss it because I drive by it every day. I don’t like it the way it is, and I know I need to change it, but I don’t know what to do about it. One of these days I’ll throw some black paint on it and start over. It’s about me. I never leave things unfinished. And if I don’t like something, I always fix it. Just need to get to where I can start again. It should come to me. I know it will.