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It’s like a “switch flipped” for many residents in B.C. long-term care homes four months after the COVID-19 ban on visitors was imposed.

And for some, it’s now too late.

“The bigger picture in this whole thing is more than just my husband,” the wife of a long-term care resident said. “How do we move forward in long-term care, changing our model of care to one that is more humane and has some flexibility, especially for situations like this? This is going to become more the norm than anything else.”

Like so many seniors who speak to iNFOnews.ca, she did not want her name used or the facility where her husband lives to be identified. Unlike some others, that request wasn’t made out fear of retaliation for speaking out. Rather, it was an effort to shift the focus away from one individual.

READ MORE: B.C. woman fighting for 'essential' access to 94-year-old father

“I want people to know there’s more than one scenario,” she said. “It’s not just daughters fighting for their parents. There are husbands and wives who are even greater impacted in some ways than children and parents. It’s a different type of relationship. It’s also a story about what’s happening in complex care.”

There are more and more younger people living in long-term care homes because of things like early onset Alzheimer’s and brain injury. It’s not just elderly seniors, she said.

Her husband is a relatively young 69 years old but has Parkinson’s disease and dementia.

Before the COVID-19 ban on visitors, she spent three or four hours most days with her husband.

Then she didn’t get to see him, other than on Skype, between mid-March and early July when social visits were allowed in care homes on a limited basis.

“He still seemed himself,” she said of the July meeting. “He was smiling. He was walking. He could still have a little joke. But I couldn’t touch him. He tried to crawl under the table to give me a hug. Of course he couldn’t. They wouldn’t let him, for one thing. It was a good visit.”

But given the limitations on the facility where he lives, it was another month before she could see him again. By then, he was a changed man.

“I could tell just by the look in his eyes that the eyes,” she said. “The visit wasn’t good. It was our anniversary and it didn’t seem to register even though I had brought him our wedding pictures and I had brought him some cheesecake.

She is a retired nurse who worked in the mental health field so she knows his disease is progressive but such dramatic changes don’t usually come so fast.

“It doesn’t go from being able to feed yourself, walk with a walker, smile and cracking a joke to not being able to feed yourself, not being able to walk with your walker, no smiling, no twinkle in the eye, no response to me emotionally or physically," she said. "He’s a shell of the man I knew two months ago.

“This is about being separated from me and not seeing me because I’m his anchor. I’m what kept his feet on his ground, as much as I could. He won’t come back because that’s the nature of the disease. Once you lose that ground, you don’t get it back.”

The July visit was around the four-month period of the lockdown.

“After about four months it seems everyone, even in their dementia and whatever age they were, just seemed to figure out this is not going to change, I’ve been abandoned, where are my loved ones?” she said.

She has no idea if there’s any medical explanation for such changes coming four months into a lockdown but has noticed it more in those who had daily visitors. Those who had infrequent or no visitors had made their fellow residents and staff their surrogate families.

She’s now become an essential visitor, meaning she can go in and feed him every day, but only because she forced her way in.

“I started getting calls from staff,” she said. “He was angry. He wasn’t cooperating with them. He was refusing his meds. He was scaring the staff. I just said, 'can I come in?' 'No, no,' they said. Finally they let me in one day. I think I was there four, five hours because by this time he’s emotionally a wreck and they don’t know how to manage it.”

She was able to calm him down and get him settled but he's still just a shell, waiting to die. She compared it to a dying farm animal going off to hide in the barn while they die.

"Emotionally, he's gone to the barn and he's not coming back," she said. "My husband grew up on a farm so he knows all about death and dying. It's not as big a scenario to him as it is to most people."

It was not a good clinical decision to lock these homes down so tightly and not have the flexibility to deal with the needs of individual residents, she said.

For her husband it’s too late for any kind of recovery.

“People are dying all the time,” she said. “Quite frankly, I don’t care if my husband dies of COVID or the flu or of a heart attack or whatever. It doesn’t matter. If you have no quality of life, what difference does it make?”

READ MORE: 'Serious inquiry' needed into B.C.’s lockdown of long-term care homes due to COVID-19

And she’s not without suggestions for change, based on the fact that long-term care homes are frequently locked down for short periods of time when there are influenza or other outbreaks.

“Somewhere they have to treat this like the flu,” she said. “If there’s an outbreak you shut it down. When it’s over you let people in again. I think, if we know we are going to go in and visit, we’re going to keep out bubbles very small.”

And, more respect needs to be given to the residents and family members.

“At the end of the day, we’re not unintended consequences or collateral damage” she said. “We’re past that point now. It’s six months. You can’t call us that anymore.”

To contact a reporter for this story, email Rob Munro or call 250-808-0143 or email the editor. You can also submit photos, videos or news tips to the newsroom and be entered to win a monthly prize draw.

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