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The Loss of Self

Published on December 1st, 2019

The New York Times had an incredible article about the difficulty in taking care of someone with Alzheimer’s Disease.  Ms. Jeneen Interlandi wrote the article and is a member of the editorial board. Her father was diagnosed in 2016.  This year, his doctor told the family that he needed a nursing home.  Well, that journey was fraught with problems.

“By then, he had been expelled from the local senior center for wandering off too much and was refusing to attend the adjacent, slightly-higher-security dementia day care. The strain of caring for him without one of those support programs was too much for our mother to bear, the doctor said. And who could disagree?

“Medicare does not generally cover long-term nursing home care. Medicaid does, but only when it deems those services “medically necessary” — and that determination is made by insurance agents, not by the patient’s doctors. The state of New Jersey, where my parents live, recently switched to a managed care system for its elderly Medicaid recipients. Instead of paying directly for the care that this patient population needs, the state pays a fixed per-person amount to a string of private companies, who in turn manage the needs of patients like my father. On paper, these companies cover the full range of required offerings: nursing homes, assisted-living facilities and a suite of in-home support services. In practice, they do what most insurance companies seem to do: obfuscate and evade and force you to beg.”

We would like to savor our time with him, but we’re often consumed by the work of keeping him safe. There are nine of us — one wife, three adult children and their spouses, two grandchildren — and just one of him. And still, we scramble. Last week, he disappeared off the front porch without a word, sending my younger niece into a tear-streaked panic.

“He was literally right here two minutes ago,” she told my brother over the phone. She had searched the yard and the street, and checked with the neighbors on either side, all to no avail. It was getting dark, the temperature was dropping, and my parents’ neighborhood is not totally safe at night. They were debating whether to call the police when my father emerged from a stranger’s car and ambled onto the porch with a fresh pack of cigarettes. (We probably owe somebody 10 bucks for those.)

 

Joe Pioletti
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