AARP The Magazine

How Dementia Changes Families

When my mom developed dementia, my dad tried to deny it and I tried to fix it. We both failed

You could sum up my father's reaction to my mother's first year of dementia in two words: Bad Waitress.

"Last week I asked her for eggs over easy and she scrambled them," he shouted over the phone one day in 2005. "Today it happened again."

I kept my tone neutral. "She didn't do it on purpose," I said. "She actually couldn't remember what you asked."

"The hell she couldn't," he snapped. "She's just not paying attention."

I tried defending her further, but he had already hung up.

Author Alex Witchel with her mom, Dementia

Author Alex Witchel with her mother. — Courtesy Alex Witchel

When my father accompanied us to Mom's neurologist's office in Manhattan, the doctor displayed her brain CT scans on his computer screen. As he started to identify where the scar tissue from numerous small strokes had formed, disabling her memory and exacerbating her depression, my father, then 81, stretched out his legs, folded his arms and closed his eyes, feigning sleep.

Certainly, his capacity for denial was epic, though in fairness, my two brothers, sister and I were not far behind. We figured that whatever the doctors found, my 72-year-old mother would have the requisite surgery, take the necessary pills and snap out of it. She'd go back to being a psychology professor and college administrator, The One Who Was Always in Charge.

But then came the driving, the Mount Everest of aging-parent issues, the one that none of us could scale or deny. One day I watched her behind the wheel and it became clear she was lost in the suburban town she'd lived in for 40 years. Though she kept telling me we were going home, she had no idea how to get there. The drama not only exposed my mother's vulnerabilities as a driver but also precipitated a seismic shift between parent and adult child, a redefinition of authority and independence.

Control of the car keys is often a flash point for families dealing with dementia, I've since learned, because the disease makes it harder for a person to recognize when skills are fading. "It's the hottest topic we have," says Angela Lunde, a dementia education specialist at the Alzheimer's Disease Research Center at the Mayo Clinic. "In a disease with significant losses, the loss of driving ability happens early. Someone with even a mild dementing illness behind four tons of steel is not a good idea."

I understood my mother's passion for driving. At 3 she had contracted polio in a swimming pool in the Bronx, and although she didn't lose her ability to walk, it was never as easy for her as driving. To lose that mobility would be devastating.

Mom's neurologist was sympathetic. Of course she should keep driving, he assured her. All she needed to do was pass a simulated driving test at the nearby Burke Rehabilitation Center. She failed it. Twice.

My siblings and I looked to our father for guidance about Mom's situation, but he wasn't giving any. For the 50-plus years of their marriage, he had considered her the superwoman/wife/mom. She took care of their children, and she took care of him. The idea that he take care of her seemed to confound him. Putting the correct pills into the Morning, Noon and Night boxes of a plastic medication organizer proved such an ordeal, I had to cancel a business dinner and take a train from the city to do it myself.

This is not uncommon, says Lisa Gwyther, director of the Duke Family Support Program and an associate professor in the university's department of psychiatry. "A lot of spouses believe they're being disloyal to acknowledge incapacity in a spouse," she says. "That reflects on their choice, particularly with men. Many of them tell me, 'I need to believe she's going to get better in order to wake up every day and deal with her.'"

It became apparent that as a family, we needed some help. Our doctor put us in touch with a social worker, Roberta Epstein. With Mom now retired, Epstein and the doctor encouraged her to participate in recreational activities — painting classes, museum field trips. My mother's dismissal was scorching. She was too old for summer camp.

But the doctor prevailed. It was essential, he said, to have activities to look forward to. We enrolled her in ceramics, a poststroke exercise class and a weekly lecture series. Visits to the library, her longtime haven, were no longer possible; she had lost her ability to read. "By the end of a paragraph, I can't remember how it started," she admitted reluctantly.

Next page: How to manage splitting up caregiving responsibilities among siblings. »

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