En español | 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.
"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.
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.
She's terrified the virus will get inside and has been told there aren't enough tests to check everyone. There are days when her depression and anxieties leave her unable to get out of bed. What's the point? she wonders.
She tried a window visit in March, locking eyes with Bill through a glass door. She held up pieces of paper with written messages to tell him she loved him, missed him and couldn't wait to hug him. He broke down, grew angry and banged on the door. He screamed at her to stop with the signs because he couldn't take it anymore. That night, he cried out her name for hours, a staff member told her, and she couldn't sleep.
She sent him a card with photographs of the two of them for their 38th anniversary in April, with a request that someone hang them on his wall. A hospice nurse who visits every two weeks and, with staff turnover, has become Scantland's best point of contact at the facility says Bill's eyes well up when he looks at the pictures.
He suffers from hearing loss, making phone calls difficult. The first time the nursing home's activities director set up a virtual visit, her unshaven husband stared through her phone, as if in a trance. The second time went better, at first. They exchanged “I love yous,” before he told her she should be with someone who can give her more. He then sobbed, tracing her face on the iPad.
She hopes the next time will be different, that he'll be less emotional and stop worrying that she has enough. She wants Bill to understand she's his, forever, and it's her turn to fret about him.
This article grew out of our effort to collect stories of people with loved ones in nursing homes. Share your story.