Social isolation has had “heartbreaking” impact on those living with Alzheimer’s

·6 min read

When Kerri Thompson was allowed to see her mother once again as an essential visitor to her assisted living residence, it was a lifeline for the family.

Kerri’s mother, Joyce, was a regular visitor to the Alzheimer Society of York Region’s D.A.Y. program six days a week. Her visits to their Edward Street facility offered social interaction that was not only craved, but needed.

She was busy, staying active and, in doing so, remained vital, engaged and interested.

But, when COVID-19 forced the shut-down of the regular D.A.Y. programs and Joyce was largely confined to her room, Kerri saw Joyce begin a rapid decline.

“My mom’s world was narrowing with COVID and now it’s literally one room,” says Kerri. “Each day, all she wants to do is do what she always loved to do, which is go for a walk. That one small pleasure and a sense of normalcy has been taken away. For her own health, she cannot leave her room and yet, for her mental health, all this is just devastating. She is losing her strength and her confidence to walk.”

Kerri being deemed an essential visitor helped to a degree. Although her mother was still confined to her room, Kerri was allowed to visit after following all protocols, but four days after Joyce was out of lockdown, Kerri tested positive for COVID-19.

Not being able to visit her mother as an essential visitor during that trying time was understandable and necessary, but no less difficult. While Kerri was sick with mild symptoms, Joyce, who tested negative, saw isolation set in even deeper. It goes without saying that COVID-19 is devastating, but “COVID-Alzheimer’s” is another thing altogether.

“Thank God for the wisdom of the government officials and general managers at the respective retirement homes to understand that COVID is absolutely too isolating for seniors and that we had to do something different from what we did in March, April and May, which was to lock them in their rooms,” says Kerri. “For the people lucky enough to be on the first floor, they got to wave to their loved ones and all the rest, but others missed even that little glimmer of interaction. There were a lot of people trying to do the right things for the right reasons, but not looking at the total impact of keeping people alive. There’s more to it than that that we have to consider. It is a no-win situation. If just one person gets sick from this idea [of essential visitors] then the public is in an uproar.”

By the time Kerri was first deemed an essential visitor, she had to re-learn the rules of the game.

Not only were there new and strict screening measures, she couldn’t take her mother into common areas. Confined to their room, both Joyce and her daughter were required to mask up. They couldn’t hug, hold hands or otherwise touch. They could not eat or drink when they were together and they had to sit six feet apart.

“But, the fact that we were able to be in the same room was wonderful,” says Kerri. “With my mum having Alzheimer’s, which is an isolating disease because they get lost in their own locked room in their mind, kind of being in that locked room physically too, I lost a lot of her. Her Alzheimer’s came on harder and faster, not to the fault of anybody, but just to the reality of a pandemic. She’s less interactive. She wouldn’t get as excited. It was just so long that she had done anything but stare at those four walls that there wasn’t that same amount of energy, desire and remembrance of some of the fun things she had done more recently while having Alzheimer’s. She even lost that.”

Joyce was first diagnosed with Alzheimer’s Disease 18 months ago, but Kerri says the reality of the situation was her fight has been “twice as long as that.” It was a difficult but necessary decision to put her in an assisted living facility so she could get the help, care and safety that she needed.

“I knew she was fraying around the edges, specifically because she had lost her sense of time,” Kerri shares.

In a pandemic, that has been a mixed blessing. While Kerri says Joyce doesn’t have a concept of how long this pandemic has been going on, there is a huge negative in that every day there could be a disappointment in waking up and not fully understanding why you can’t leave your room or receive visitors.

“At the first stages of this pandemic, I couldn’t even visit her. I was the person standing outside her window every single day, usually with my then-15-year-old son just waving to her. We weren’t even allowed to have the window open to try and communicate with her out of logical fear of the virus. Some days you would see her in tears and some days you saw a smile on her face, but you didn’t know what you were going to get. Every day I was distracted – never with her safety, because the retirement home does a great job – but it was more her happiness.

“Sitting alone in her room has taken away the joy. She knows enough about what she is missing to say, ‘Kerri, sometimes I just want to scream.’ I get you, mom. Go ahead and I will scream with you. Please, we need the vaccine faster so mom can go to the Alzheimer Society of York Region D.A.Y. program and fight to keep what abilities she has.”

Kerri’s quarantine ended on January 8 – 14 days are an “eternity” when it comes to Alzheimer’s, she says – and she can’t wait to be with her mother once again, but this difficult journey has only underscored that the isolation that is a by-product of COVID can have unintended consequences.

“I have nothing but applause to give to the caregivers and management of the facility that my mom is at,” says Kerri. “To be honest, there isn’t a single thing that I truly think they could do differently, except one little thing that would make me and my mother happy is if I could bring her in the car and just drive her around.

“We’re trying to be smart but at the end of the day the most important thing is their happiness in the last years of their life. Let them have meals together as opposed to going into these outbreak situations where everyone has to stay in their room and there are no activities. I am hoping once the vaccination moves through retirement homes, essential workers, that they can look ahead and say, ‘We have the vaccine. What did this allow us to do different from where we were a month or six months ago because to die of loneliness – that, to me, is the cruellest thing of all, when there are all these people around who are loving and caring and just can’t get access. That goes for the people who work in the retirement home: they are loving and caring and they are not allowed right now to do the activities, to give hugs, to hold people’s hands. They would if they could, but they dare not to.”

Brock Weir, Local Journalism Initiative Reporter, The Auroran