One of the first things Edward Wilson did when he got home after being hospitalized for six months with COVID-19 was ask his wife if she knew him.
Wilson, 80, contracted the novel coronavirus in March. He spent time in three intensive care units, was intubated twice and given a tracheotomy. His condition was so grave that his relatives were told twice to make arrangements for his death and gathered around on an iPad to say goodbye.
“It was such a rollercoaster ride because he’d get better, then they’d take him off the vent after two months and then transfer him to another hospital and then back on the vent again,” said his daughter, Jillian Danford.
Danford says both her parents caught the virus from an in-home personal support worker (PSW) who did not properly wear her personal protective equipment.
Her mother, Janice Wilson, 79, spent a month in the hospital and now requires constant care after what Danford describes as irreversible damage to her mobility.
Edward Wilson had to be transferred to two different hospitals because Ontario’s ICUs were overwhelmed and there weren’t enough beds. But his wife did not always know he was gone because she has dementia.
“My mom is in and out of knowing who my dad is,” said Danford. “In a way, I think it might have been better that she didn’t understand.”
Danford says that before she got COVID-19, her mother’s dementia was mild and progressing naturally, but that the virus “kicked the dementia into another level.”
Danford also says her mom went from struggling a little bit with her mobility before COVID-19 to losing her ability to walk.
“In older people, COVID can often make chronic conditions worse,” said Dr. Samir Sinha, director of geriatrics at Toronto’s Sinai Health and the University of Health Network. He says for dementia specifically, COVID can escalate a mild case to a moderate or severe one.
“For older people who’ve had a significant experience with COVID … they’re more likely to be facing disability and poor function overall,” said Sinha.
Even if someone is hospitalized for six months directly because of COVID-19 and its long-term effects, like Edward Wilson, Sinha says that it is difficult to diagnose long COVID in older people because they are more likely to already be living with multiple chronic conditions.
“Sometimes it’s a bit hard to understand whether it’s purely a long COVID symptom, or it may be a reflection of other illnesses or diseases, for example, that have now progressed because of the disease.”
“We don’t know a huge amount about long COVID in older adults,” said Sinha.
2-and-a-half months of rehab
Before he returned home on Sept. 16, Edward Wilson had been in an in-patient rehabilitation program since July.
Wilson says parts of his body that he never had problems with before COVID-19 give him pain now and that he gets tired very easily.
For example, he now says he has problems with the nerves in his hands.
“Sometimes, I can stretch my hand out and the next time I can’t.”
During the six months he was hospitalized, Wilson says he dreamed of coming back to the family home where he and his wife raised their kids.
“I worked hard for that to happen.”
He says he pushed himself at the hospital.
“They didn’t believe that I could walk,” said Wilson, who began trying to get back on his feet with two people’s assistance in August after pushing to be allowed to practise with a walker.
When he was previously bedridden with cancer, his wife used to bring breakfast, lunch and dinner upstairs to his room.
Now he’s determined to recover so he can care for his wife: she sleeps on a hospital bed in the living room. His wife requires 24-hour care, so the family has hired a private caregiver and relies on a PSW provided by the Local Health Integrated Network, who Danford says comes inconsistently.
“We have to sit down together and try to work our way back to a life of retirement, because this is not retirement,” said Wilson.
He has been home for less than a week and already the family is preparing for the next move.
“My dad worked so hard to have this beautiful home … It’s too big for them now, so we have to make decisions for them to downsize and go into assisted living,” said Danford.
“Never did I think that a virus would come and knock them down and put them into a future that none of us really expected to happen this fast.”