history-ophthalmology.com

As told to Nicole Audrey Spector

I knew my husband, Bob, had Alzheimer’s disease before anyone else, including Bob. He was only 65 but exhibited some of the telltale symptoms, including forgetfulness and distractedness, that were highly unusual for him. Bob was smart and incredibly efficient, a former journalist. But the bills, which he managed, and which we had the means to pay, began to pile up. There was something wrong. And I, having studied Alzheimer’s in my career as a women’s health researcher, was all too aware of how the disease can strike.

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

Around this time, I happened to host a women’s health panel with an Alzheimer’s physician. I made Bob an appointment with this doctor and we quickly had the dreaded but accurate diagnosis: Alzheimer’s disease.

For a few years after his diagnosis, Bob was fine. Not great, but well enough to travel with me and live a somewhat normal life, even if not independently: I was always by his side. But he deteriorated the way people with Alzheimer’s always do, and finally it was time to transfer him to a memory care facility — a tough decision if ever there was one, but one I thought was best for him. Bob’s overall health and well-being.

Bob stayed in the facility for a while, but I wasn’t happy with the quality of his life there. Eventually, I decided it would be better at home, with me and a train of “24-hour caregivers.”

It may have been my husband’s body in the house with me, but the man in the house was not my husband. Bob was long gone now. This man was but a cracked and hollowed out shell of my husband. He didn’t even really look like Bob. Not really. The intellectual gleam in his eyes, the glimmer of a robust and familiar mind, was erased. The firm smile, the confident posture, the ability to be effortlessly relaxed… all rubbed off like an old copy in one of his stories that never went to print.

I took over the upstairs of the four bedroom house and Bob and the assistants took over the downstairs area. While I was never alone and had plenty to occupy between work and my social life, there was a loneliness to my days and a gnawing guilt combined with a sort of reverse pain. Bob was still alive, but I missed him, and sometimes I even resented the helpless, crazed person he had become. And then I felt bad about it because, obviously, he was an innocent victim in all of this.

I lived in a constant state of agony watching Bob descend, but there was one thing that helped sustain me, and I didn’t even know it at the time.

I have always loved to paint and found myself deeply drawn to canvas during Bob’s decline. Painting gave me a sense of focus and drive that had nothing to do with my work or my personal life or with Bob. It was entirely creative and self-motivated and gave me tunnel vision in the best sense of the word. Painting blocked the rest of the world and provided me with a springboard for the mornings. I often woke up with the first thing I thought was how to continue the painting that I had left off the day before.

A painting by Phyllis Greenberger

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

Right now, I’m a bit struggling with painting and with my pain. The 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. But my best friend, who happened to be my husband of 50 years, passed away. He died a horrible death and I watched every second of it tormented. There’s no sugarcoating that, or the fact that the last dozen years of our life together has been filled with the trauma, despair, and cruel madness that Alzheimer’s brings.

There is a painting that I started in my kitchen. He’s the one I’m in a rut with. I can’t lose him because I cross his path every day. I don’t like it the way it is, and I know I have to change it, but I don’t know what to do with it. One of these days I’m going to throw some black paint on it and start over. That’s the thing about me. I never leave things unfinished. And if I don’t like something, I always fix it to like it. It’s just about getting to the point where I can start over. It has to come from me. I know it will.