He’s starving to death in a nursing home. Why?
Families are watching their parents with dementia grow lost, thin
Through the window glass, Derek McCormack can see his father is starving.
Cheekbones sharp, a belt knotted tight around his waist, the 80-year-old man stared at his son and daughter from inside the retirement home’s patio door.
At the beginning of the COVID-19 lockdown, he’d do a little Irish jig of happiness during window visits. He patted his heart. Sometimes he kissed the glass. Aphasia dementia took most of his words, but he mastered expressions of love.
On Tuesday, he just stood. He shook his head. McCormack thought he looked angry.
Even with the belt tied tight, his pants fell to the floor. The man who once played elite hockey, studied world history at Western University and sold groceries to writer Margaret Laurence at his shop in Lakefield, Ont., stared at his children, underwear exposed, legs like a sparrow. A worker motioned McCormack and his sister to a different window. She opened the glass and spoke through the screen. It made McCormack wish his dad was allowed to come near an open window so he could hear his children’s words.
“You need to get him a new belt because he is so skinny now,” she said.
McCormack, a writer, said the worker is kind. “We told her, ‘We’re not worried about his pants. We want to know why he has lost so much weight.’ ”
He recalled the woman’s response. “She said, ‘Well, he doesn’t eat. And he hasn’t had water.’ And we said, ‘Well, he actually loves to eat. He loves food.’ She said because people are eating in their rooms now, they are dropping the tray off, and when they pick it up a half an hour later, he hasn’t eaten anything.
“That terrified us to hear because, you know, I think what was happening in the dining hall was he actually liked to go down with the ladies, and there were cues for him to eat. He’d eat everything on his plate. But in his room alone, it’s not that he doesn’t want to eat, he probably forgets that it is sitting there. He forgets he is hungry.”
Like many others with cognitive decline, McCormack’s father is confused by the strange new world created by the COVID lockdown.
McCormack asked that his father’s name not be used, nor his retirement home identified, because his sister feared recrimination. Before the pandemic, many families were afraid to complain.
Now that they are completely reliant on a home, those worries are intense. McCormack said managers told him his father has lost 22 pounds. He does not believe the home has purposely let his dad go hungry, but wants to know the medical reasons for the weight loss. Does his dad need reminders to eat? Or is it depression?
McCormack said the workers at his father’s home have been generous with window visits since the lockdown began in early March, but as he’s been unable to connect with his dad through a thick pane of glass for two months now, he no longer knows what his father is feeling.
“There is a possibility he is starving himself. There is a possibility he is not hungry anymore. I think he needs someone to say, ‘Eat that.’ Even when he was at the guys’ table, he would say, ‘Are you going to finish that?’ And he would take their piece of shortcake.”
Most Ontario retirement and long-term-care homes have implemented hardcore lockdown rules. The goal is to block or limit the virus.
The unintended consequences have left many in decline.
Even if homes had no infections, most have stopped communal dining. As of Friday, no residents have tested positive for COVID in McCormack’s father’s home. One staff member tested positive in the first week of May and left for home isolation. For the past two months, residents have been allowed to come and go, to sit in the sun outside or shop in nearby stores, McCormack said.
McCormack said his father has a “wander guard” designation for his long and sometimes unexpected walks through the Toronto neighbourhood.
During the lockdown he has been banned from leaving, even to visit his children with safe distancing in the courtyard.
Retirement homes fall under the Residential Tenancies Act, so there are generally no restrictions on resident freedoms because they are considered renters, who pay for extra services.
Laura Tamblyn Watts is CEO of CanAge, a national seniors’ advocacy group, and a lawyer. She has been searching the law for reasons why retirement homes are able to force tenants to stay inside.
“I cannot find anything in law that would allow a person to be contained in their own home, short of the federal government using the Quarantine Act, which they have not done,” Tamblyn Watts said.
“We are hearing from families on an almost daily basis of how incredibly upset they are, that they are not being recognized as essential care providers,” she said. “For some families, a quick window visit is fine. For some other families, they are people who have provided the daily care.”
McCormack knows that his father’s dementia has worsened from isolation.
“We always tell him, ‘We’ll have ice cream. We’ll go for a walk.’ This time, he just shook his head. He looked mad. Like we were deceiving him. It was crushing.” McCormack has been watching, through a window, as the dad he knew disappears.
“The glass is getting thicker.”