The tragic cost of barring family caregivers from nursing homes is a wake-up call, family says

From the minute his wife Jeanne was admitted to a long-term care institution in Ville-Émard after a hospital stay in February, Bob visited faithfully.

He'd arrive in the morning and stay until suppertime, bringing homemade sandwiches and bottles of Ensure to keep up the weight of his rail-thin, bedridden wife.

Sick with emphysema, Jeanne knew it was critical she eat well and stay hydrated.

The couple, who celebrated their 50th wedding anniversary last month, hoped she'd eventually be able to come home.

But in mid-March, the province suspended all visits to long-term care facilities to limit the spread of COVID-19.

CBC is withholding the real names of everyone in this family for privacy reasons.

Jeanne's family said they worried about who would look after her needs at CHSLD Yvon-Brunet once family caregivers were barred.

"I understand it's a lot of work to take care of someone who is bedridden," said Bob's daughter-in-law, who CBC is calling Beth. Bob "took care of her. He moved her in the bed. He fed her. He did everything for her."

Bob left a cell phone with his wife so they could all stay in touch, but by mid-April, Jeanne's family often couldn't reach her. When she did answer, the frail 68-year-old was too weak to hold the phone.

"She told my sister-in-law that she had been two days without anyone changing the water in her little water jug that she had," said Beth.

In a series of frantic Facebook messages Beth shared with CBC, family members questioned whether Jeanne was getting her medication or eating. They debated trying to get her transferred to a hospital or put on an IV drip.

"I called the place 10 times this week and there is never any answer," one sibling messaged.

"I think I'll drive over there and see if I can get info," Beth responded.

One of Jeanne's sons made the trip, arriving with a ladder to try to get a peek into his mother's third-floor room, but the window blinds were closed.

Positive for COVID-19

Bob did not see his wife again until Thursday, April 16, after she'd tested positive for COVID-19.

Some 115 people — more than 70 per cent of all residents at CHSLD Yvon-Brunet — are, in fact, positive for the virus, making it one of the worst outbreaks of any long-term care home in the province.

Jeanne was isolated in her room, and staff at the CHSLD believed she was dying.

They called Bob and asked him to come immediately if he wanted to say goodbye.

He found Jeanne nearly unresponsive — only able to flutter her eyelids.

"He was quite shocked," said Beth. "He said she was gaunt and very shrivelled."

Bob fully expected to get a call the next day to inform him his wife had died.

But the next day, Friday, the doctor told Beth her mother-in-law was sitting up in bed and asking for her husband. The doctor said her lungs were no worse than they had been due to COVID-19, although Jeanne was being given strong pain medication for a bad bedsore, which Beth took as an indication that her mother-in-law was not being moved regularly enough.

Over the weekend, Bob was allowed back to his wife's bedside for two short visits. His family debated whether this was wise, as he has just finished cancer treatments and is himself immuno-compromised, but Bob would not be talked out of it.

He was outfitted in personal protective gear and told to stay in his wife's room, and to ring the bell if he needed anything or wanted to leave.

Both times he visited, he found his wife's meal tray had been placed three metres away from her bed, the food on it untouched.

"I don't understand how they expected that she could have possibly gotten the food anywhere near her. She wasn't strong enough to even suck water through a straw," said Beth.

Her father-in-law told her his wife's lips were so chapped, Vaseline didn't help. She was so weak and dehydrated, he had to spoon water into her mouth.

"Nobody is coming in to check if he needs anything or if she needs anything," said Beth in a phone call to CBC News on Monday morning, when Bob returned for what would be his final visit.

"My mother-in-law is not even strong enough to ring the bell herself, so how often are people going in to check on her? I have no idea."

She said she understood staff were busy and likely overwhelmed, but she doubted her mother-in-law would have deteriorated so quickly if Bob had been there to take care of her from the start of the pandemic.

Chronic understaffing

A front-line worker from CHSLD Yvon-Brunet told CBC News the loss of family caregivers was huge for the institution.

"They were the ones who did a lot of the work, free of charge, that we didn't have time to do because of a lack of staff," said the woman, who CBC has agreed not to name for fear of losing her job.

She said the care home was chronically understaffed even before the outbreak, but since March, it has grown worse.

The regional health board which oversees Yvon-Brunet, the CIUSSS Centre-Sud-de-l'Île-de-Montréal, said 63 employees have either tested positive for COVID-19 or have had to take preventive leave since the pandemic started.

Although some are now returning to work, many are still missing.

The worker told CBC many people are being asked to work overtime or consecutive shifts, which she said is not sustainable.

Under ideal circumstances, each unit would have a nurse, nursing assistant and four patient attendants (préposés aux béneficiaires).

But since the crisis started, she said, during a night shift, there is often only one nurse and a couple of nursing assistants for the entire building, which has a capacity of 185 beds.

Reinforcements being sent in

Jeanne died on Monday afternoon.

Bob is grief stricken. He blames himself for not being able to care for his wife at home after she was released from the hospital last February, leaving Jeanne with no choice but to be transferred to a CHSLD.

Jean Nicolas Aubé, a spokesperson for the CIUSSS Centre-Sud-de-l'Île-de-Montréal, said the agency cannot comment on specific cases, but he extended his condolences to the family for their loss.

He said the priority at CHSLD Yvon-Brunet remains the health and safety of patients, but like many other care homes, it is struggling with personnel shortages.

More than 1,000 staff at that CIUSSS alone are off work, Aubé said. More than 700 have tested positive for the virus, and the rest are self-isolating as a preventive measure.

In the last few days, Aubé said, some nurses, patient attendants and a few specialists have been transferred to CHSLD Yvon-Brunet to help out.

Some members of the Canadian Armed Forces have also received training and will start at the care home on Thursday.

It's too late for her mother-in-law, but Beth hopes the tragedy unfolding at Yvon-Brunet and in so many other long-term care homes in the province is a wake-up call. It is time, she said, to fund and staff CHSLDs properly.

"So many cuts have been made over the years, and it affects everybody," she said.