Only Human with Joan Axelrod-Contrada: I want to ‘Paint it Black’: A rock ’n’ roll anthem provides validation through tough times

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By JOAN AXELROD-CONTRADA

For the Gazette

Published: 03-07-2024 1:07 PM

I heard the song “Paint It Black” by the Rolling Stones on the radio early in my late husband Fred’s illness.

Never before had I listened to the lyrics carefully enough to know they were about grief. I’d always taken it as a song about generalized depression. This time around, I had such a visceral reaction I wanted to dye everything black with a can of spray paint.

Mick Jagger and Keith Richards have long known how to marry rock with the blues. Instead of telling me to calm down or lighten up, the song validated exactly what I was feeling at the time. I had a bad case of “anticipatory grief,” the complicated swirl of emotions that happens before the final loss.

Anger figured prominently in my state of mind because what seemed like a simple head injury from a bicycling accident turned out to be something much more dire. Incurable and untreatable. The disease of Frontotemporal Dementia (FTD) was literally eating away at Fred’s brain.

Unlike Alzheimer’s, FTD affects judgment more than memory. Fred urinated in public and carried plates out of restaurants. He talked about wanting to “off himself” by jumping out of a moving car. He spoke about his “impure thoughts” of other women.

I had too much to do to mope around, but the image of myself with a can of spray paint from “Paint it Black” stuck in my head. Every time I heard couples my age talking about all their normal plans for their normal lives, I felt a tsunami of jealousy like nothing I’d experienced since my moody, broody adolescence. I wanted to paint everything — and everyone — black. A mere paintbrush wouldn’t do. I needed a can with a heavy-duty nozzle.

Of course, I knew that, as bad as my plight, Fred had it much worse. He was painfully aware that his brain was not working the way it used to. I’d try to make him feel better by telling him that his B functioning was better than most people’s A, but he knew that, ultimately, his grades would keep slipping. His B would succumb to C, D, and, ultimately, F.

As caregivers (a role that many of us will assume at some point in life), our biggest challenge can be overcoming the sense of helplessness that disables us like a straightjacket. Our loved ones’ bad prognoses squelch our optimistic spirits. Much as we might want to rise to the occasion, we can’t help but feel like we’re David fighting Goliath.

Although every disease has its own horrors, dementia can be particularly cruel. One common symptom — sexual inappropriateness — stabbed me in the heart. How was it possible that my true-blue-family-man of a husband had turned into a would-be philanderer? Why was he suddenly longing for the old girlfriend who’d done him wrong? Such questions made me wonder if Fred had been hiding a side of himself from me during our long, seemingly happy marriage.

Here I was, changing his incontinence briefs, wishing his old girlfriend would do it for me. Faced with thoughts like these, caregivers like me have to work twice as hard to keep our cool.

The image I got from “Paint it Black” of spray-painting everything in sight helped take the edge off my anger. Little did I know I harbored fantasies of vandalism!

I needed to remind myself that the disabled man who spoke longingly about his old girlfriend still had some of the old Fred inside of him. However, I found this excruciatingly difficult to do.

Only saints totally relish the caregiver’s role. Forced to be nurse, cook, chauffeur, and recreation director for our ailing loved ones, we never know which part of our own self-care is going to slip through the cracks. It’s grueling even for those of us who had good relationships with our ailing loved ones. I can only imagine how difficult it must be for those who didn’t.

Years after Fred’s death, I still viscerally feel the red door and want to paint it black. The song gave expression to not only my sadness but also my anger.

It gave me an action — Paint it Black! — even if it was just something to fuel my own imagination rather than stew in my own misery. All of us can visualize ourselves with an imaginary super-power. Every now and then, I smile at the notion of a phalanx of caregivers armed with black spray guns like wild graffiti artists finding a voice in the world.

Joan Axelrod-Contrada is a writer who lives in Florence and is working on a collection of essays, “Rock On: A Baby Boomer’s Playlist for Life after Loss.” Reach her at joanaxelrodcontrada@gmail.com.