Final Pleasures

A Consolation

The view from my mother’s kitchen

I was struck by the OpEd in last Saturday’s New York Times “My Father Didn’t Want to Live if He Had Dementia. But Then He Had it.”

https://www.nytimes.com/2023/10/23/opinion/alzheimers-dementia-advance-directives.html

The author, the cardiologist Sandeep Jauhar, wrestled with the advance directive his geneticist father had written 17 years earlier, which said he only wanted to live if he had a “meaningful life.” Now he had dementia, had recently lost a lot of weight, and was failing. Should the son, as directed, withhold medical treatment and let his father die?  Jauhar writes: “The scientist in him would not have wanted to live without an intellectual existence.”

Yet, “Despite his weakened state, my father didn’t seem unhappy. Over the course of his illness, he’d never expressed a sincere wish to die.” In the previous few months, “watching TV, spending time with his caregiver and children, and even just eating a spoonful of ice cream had clearly given him genuine pleasure.” The author and his brother finally obeyed the directive and pulled out the IV lines, but not without the author’s misgivings.

As for me, as long as I’m not in pain, even if I’m senile, I want to live and enjoy the pleasures that remain! (Attention, hubby and sons!)

Although in this Substack I’ve been writing exclusively about pleasure, I don’t believe a pleasure-filled life is as fulfilling as a purposeful life, however one defines “purpose.” But if dementia robs one of purpose, it’s useful to remember that many simple pleasures remain.

When a friend or a family member has Alzheimer’s, we mourn their former wit and charm. But the person afflicted, while sometimes aware of a deficit, is not constantly comparing who they were then with who they are now. They are often living in the present, which many philosophers say is the key to a happy life. And they still have their pleasures.

My mother published her wonderful, sexy memoir, Passport to Paris, at age 95—just in time to give lively interviews. A year later, she began to get a little confused, and her dementia progressed until her death at 98. But she had many pleasures, right up to the last days of her life.

What pleasures are available to a person with dementia?

Sunlight, especially on the skin. Sunlight, judiciously enjoyed, seems to make people feel, well, sunnier.

A view. Trees moving in the wind, ripples fanning out across a lake, clouds floating over the tops of buildings: If things are changing, there’s always something to watch. And it need not be nature. A window on a busy street can also be engrossing.

Food. People with dementia continue to derive enjoyment from their favorite foods, as long as eating isn’t difficult. Is it chocolate or pears that they enjoy—or both of them together? My grandmother, who was quite dotty by the time she reached 95, loved to eat, so she ate six or seven meals a day, with gusto.

She also loved to sing . . . in French, the language of her youth in Egypt. Music and singing are pleasures you can enjoy at any age, and in any state.

And many people with dementia continue to delight in babies and children, especially their progeny. Even at the very end, my mother’s eyes lit up when she saw her youngest great-grandchild, then three months old.

While heart-breaking for me and my sister, who missed our sparkling, ever-original mother, the last couple of years of my mom’s life were not especially sad for her. She liked to watch and rewatch the tennis matches of Roger Federer, whom she called “my darling.” She was always looking out her window and remarking on the clouds, the waves, the birds at the feeder. She got great enjoyment from the little pleasures of her day.

Until one day she didn’t. In the last couple of weeks, almost everything made her frown or wince or sigh. By then she was bedridden. Trying to cheer her up, I asked, “Mom, what’s the favorite part of your day?” She answered without hesitation, “Lying back down in bed for a nap.”

She had lost all pleasure in life. She was ready to die. And a week later, she did.