Voices

A thousand cuts

A 93-year-old mother bravely goes from doctor to doctor, procedure to procedure

DUMMERSTON — Lingchi, also known as “the death of a thousand cuts,” was a method of public execution in China that involved cutting off pieces of a person's body until he or she died. Banned in 1905, this drastic punishment first became a metaphor and then came to rest in the English language as a cliché.

Which is why it jumped into my mind on the day my 93-year-old mother, a former dancer who lives alone in a tiny independent living complex apartment in Florida, had three skin cancers removed from her face.

In the next few weeks, she will also have two cataract surgeries. And then there's a recurring urinary tract infection and chronic kidney disease.

All alone, my mother goes from doctor to doctor and procedure to procedure. I'm her caretaker, her only living child, and I live 1,500 miles away. I talk to her every day, handle her business affairs, speak to her doctors on the phone, and tie myself into knots of worry and pain.

My mother's mind is clear, and her heart, lungs, and hemoglobin count are excellent. I think she's incredibly brave to be handling all this by herself, but I fear for her well-being every day.

* * *

How did we get into this situation? First of all, Mom refused to move up north. The reasons she gave were the cold, the lack of a Jewish independent living facility, and the friends she has in Florida.

In September, after a lot of discussion, fact-finding, columns of numbers, worry, sweat, blood, and tears, I helped Mom move from her large house to the independent living facility. By luck, in a totally dreadful real estate market, we managed to sell the house for enough money to keep her going for the next three or four years.

The move alleviates her biggest problems: aide roulette, loneliness, isolation, an inability to cook anymore, and the burden of maintaining a large house that was aging just as fast as she was.

In the two months she's been in her new home, she's unpacked, decorated, bought furniture, made friends, and joined a play-reading group. She's gone on outings to the theater. She goes to dance classes. She has a physical therapist who comes to her apartment three times a week to help her with cramps and balance.

She's secure and well-protected - protected, at least, from everything except her own body. Sometimes, it appears that a thousand cuts isn't the half of it. Call it “lingchi light.”

* * *

Caretaking may be another form of lingchi. It might not cut away pieces of your body, but it certainly cuts away pieces of your heart.

My ability to take care of my mother is complicated by distance. But geography is never the only problem. As people live longer and longer, I don't know if there are any really good choices.

My friend Bunny, for example, decided that her elderly mother could no longer live alone and moved her into the home she shares with her long-term boyfriend. They were happy to do it, but they didn't expect what happened next.

“I still don't think I could park her in some hellhole of an institution,” Bunny e-mailed me. “But she's pushing me. She's pushing me. I seem to be in a constant state of near-rage, snapping at everything.

“Here I am, insisting she take her meds and breaking my butt trying to blast her out of her chair. I'm such an idiot. I should let her do her own thing, and let the chips fall where they may.

“It might hasten the inevitable, but she seems to prefer that option anyway. I'm not sure I'm doing her any favors by keeping her alive. Isn't that sad?”

Another friend of mine, Lee, built an apartment onto her spacious house and moved her mother in, only to see her quickly drop into dementia.

It's so bad now that Lee had to install a pulley system just to change her mother's diapers. She spends half her time finding and training aides, and the other half taking care of her mother when the aides quit.

Her mother's physical health is excellent. Lee is wound as tight as a drum.

Bunny and Lee acted on their natural instincts to protect and nurture their mothers. Then, there's me - same instincts, but not being near, agonizing over everything that can possibly go wrong, and feeling helpless.

* * *

Back in my grandmother's day, families were large and relatives lived close to one another. Someone, usually an unmarried daughter, took on the role of primary caregiver.

In my grandmother's family, it was her Aunt Leah, who lost a leg to a dreadful disease when she was young. It was assumed that no man would have her, so she obediently lived at home all of her life and took care of my great-grandfather.

Women's lives were disposable then. They aren't now.

When my grandmother started aging, she was a widow, and living happily in New York City. My mother virtually forced her to leave her friends and move to Florida so she could take care of her.

Grandma bought a small condo apartment near my parents and hated it. Since I was unmarried at the time, she was furious that I didn't move in and take care of her.

In her mind, I was the next generation of Aunt Leah. She even tried to bribe me with a car. Luckily, my father stepped in and said no.

So Grandma put herself into virtual solitary confinement, speaking to no one but her family for the next 18 years. She tormented my mother with guilt until she died in a nursing home at 94.

My mother may think that she's protecting me from the same fate she suffered at the hands of her mother. I don't know.

But I do know that I'm no Aunt Leah. I'm not a selfless person. I've chosen to live my life in Vermont, emotionally supported by my husband, my work, and my community. I consciously decided not to sacrifice my life, live in Florida, and devote myself to my mother's care.

So there is Mom, far away, proudly independent, yet depending on the kindness of strangers - and so far they have been extremely kind. Her thousand cuts are of a physical nature. She bravely faces down each one, saying, “We will get through this, Joyce."

I'm only a plane ride away, so my thousand cuts are mental: guilt, aching fear, and helplessness.

We both know a time is coming when she will go so far away that no plane on Southwest's schedule will be able to take me there.

Lingchi may be long and lingering, but we all know how it ends.

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