Her Husband's in a Nursing Home, Cut Off During the Pandemic

Phyllis Scantland's husband always took care of her. He stuck by her when a major depressive episode forced her out of work, stepped up when she battled breast cancer, and insisted that she deserved more — a loaded Ford Escape, a bigger home in a fancier neighborhood — than she wanted for herself.

So after Bill Scantland, 84, was diagnosed with Lewy body dementia a couple of years ago, Phyllis, 63, was determined to reciprocate. That's why she initially refused to put him in a nursing home. She went so far as to divorce him “on paper only” so she could be paid as his caregiver and keep him at home — until she had no choice. (Spouses, through the program she pursued for assistance, can now be compensated.) And it's why being cut off from him now, given the COVID-19 pandemic and the federal ban on almost all visits to long-term care facilities, wracks her with guilt.

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"He knows that he needs me, and I'm not there.… I'm afraid that he thinks he's lost me,” says Scantland, of South Bend, Indiana. “I don't want him to think that he's forgotten or that he's not loved. I don't want him to think he's going to die there alone.”

After his diagnosis, she promised to care for him, which, to her, meant keeping him at home. But by last summer, that plan became unsafe for both of them. She installed special locks to keep him from wandering outside. He fell and broke his hip. And dementia made the gentle man she loved combative. One time, he grabbed and shook her; he sometimes punched in his sleep.

Phyllis and Bill Scantland on their wedding day in 1982.

Courtesy Phyllis Scantland

Still, she fought for him. She moved him out of one nursing home after he broke his other hip there. That place also lost his glasses, left him in soiled briefs and stopped giving Bill a fitted sheet.

The Golden LivingCenter in nearby Mishawaka, where no coronavirus cases have been reported, is a better fit. But now that she's unable to see him, her fears mount. She worries that he's isolated, that his legs are atrophying, that he's not eating enough.