Thursday, September 19, 2024

Racing to Retake a Beloved Trip, Before Dementia Takes Everything

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Years earlier, my father told me about watching his mother take these tests at the Memory and Aging Center at the University of California, San Francisco, and desperately wanting to help her. Now, as I watched him search for keys and clocks within an image, I closed my eyes to stop myself from frantically scanning.

On test after test, my dad showed cognitive impairment, but he was in denial. I’d recently discovered missed payments, late payments, miscalculations and $150,000 worth of debt racked up on his personal credit cards, all for his beloved hi-fi audio-video business. He made the minimum payments when he came across a bill, forgetting that they didn’t actually pay down the debt. All the while, it was accruing interest at 20 percent. Credit-card companies kept sending him new cards; I found 14 of them in use. It turns out crashing credit scores are often an early indicator that someone is developing dementia. My dad still presented well, always had a plausible explanation for why stress was weighing on his performance. His primary-care physician hadn’t noticed any issues, but when I begged him to evaluate my dad’s memory, the tests shook out another truth. Seeing their results over two years, the doctor had agreed to stage an intervention. “Your cognitive abilities aren’t going to get any better,” he said. “You must close your store.” It was like amputating his arms to save him.

What made discerning the disease so difficult was that intransigence is not entirely unlike my dad’s personality. Actually, as far as I can remember, it is his personality. Alzheimer’s was only a calcification of his most irritating tendencies, the ones I had to translate for my bewildered spouse. He exploded, for example, when, as requested, I emailed him flight options for my wedding in India five years ago. “I’m busy!” he erupted, and he hung up. I rang back, and he screened my call. Again and again and again, for days, as prices kept ticking up. I knew he wanted to come, that he wouldn’t miss it, that he would take more delight in it than nearly anyone else. Two weeks later, he called to tell me he had printed out my email to study. By then, those flights weren’t even options.

Was this the beginning of his Alzheimer’s, in 2019? Or was he just a man afraid of taking time off and traveling in a formidably foreign country? I’ll never know. What I do now know is that the disease can begin 10 to 20 years before it’s detected. And in the Alzheimer’s care community parlance, his was a classic “catastrophic reaction” — the outcome of being overwhelmed when called to process too many things at once. A brain short-circuiting. “Often a catastrophic reaction does not look like behavior caused by an illness that causes dementia,” Nancy L. Mace and Peter V. Rabins write in their caregiver guide, “The 36-Hour Day.” “The behavior may look as if the person is merely being obstinate, critical or overemotional.”

Then there was his visit to meet his 3-day-old granddaughter, Vidya, one of just a few times he had closed his store in 47 years. Taking her pruney, purplish limbs into his arms, he burst into tears, in awe but a bit forlorn. “Your grandmother would have loved to meet her,” he said. Over his weeklong stay in 2021, he was weirdly helpless. He lingered in bed and didn’t eat, and at some point, I asked him my daughter’s name. “Sethalina?” he said. What was bizarre wasn’t that he forgot her name; Vidya is hard. But there was no rationalizing the oddity of the name he generated instead. He ventured a second guess: “Citralina?”

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