Missing special people at AS York

During the COVID-19 pandemic, caregiver Jennifer Dance Bowen is missing many things about the Alzheimer Society of York Region, especially the Stouffville D.A.Y. program, where her husband Feroze Mohammed attended until March.

“I miss having time to myself,” Jennifer said. “Feroze is always following me around, hovering like a shadow. I’m his security blanket.”

Feroze lives with Alzheimer’s disease, and there has been a decline in his cognitive function since March, when D.A.Y. programs closed.

He is now unsteady on his feet, can no longer dress, brush his teeth or toilet himself. He rarely finishes a sentence. And sundowning, where a person living with dementia gets restless in the early evening, began in April.

“To a certain extent, it could be that he is missing the mental and physical stimulation of the D.A.Y. program,” Jennifer said. “But it’s hard to tell for sure because the disease tends to go in steps rather than a gentle slope.”

Jennifer pulled Feroze out of the D.A.Y. program March 11, the same day the World Health Organization declared a global pandemic. As soon as she heard the announcement, she did a grocery shop, collected Feroze and started self-isolation. She said she was initially concerned about Feroze getting sick.

“It’s much more difficult looking after someone with Alzheimer’s when you add another problem to the mix. Even a common cold or a bladder infection makes dementia far worse. So keeping him ‘healthy’ is a priority.”

However, she soon began to worry about herself. With a heart condition, she said she didn’t think she would survive the strain on her heart caused by respiratory disease.

“And even if I were to get mildly sick, what happens to Feroze then? The responsibility of caring for him is huge.”

Over the last few years, Jennifer has used many AS York programs, including Minds in Motion® for people with early to mid-stage dementia and their care partners (funded by the Ontario Trillium Foundation).

She has also attended educational courses and support groups, made up with “the only other people in the world who really understand what we are going through.”

In April (2020), AS York created a virtual D.A.Y. program, a daily email that offers YouTube links to gentle exercise and music, plus word searches, colouring sheets and more. Jennifer is participating.

“We are using it as part of our new daily routine. Our favourite part is when (musician) Steve Porter does a 30-minute sing-along. Feroze sometimes claps or taps his toe or sings a few words...Feroze is very quiet these days and doesn’t smile much, or talk, but he interacts with Steve in such a sweet way, waving at him, and talking back.”

While Feroze can no longer participate in the exercise portion, Jennifer said she herself does it while Feroze stands nearby.

 For day-to-day life, Jennifer intersperses physical activity such as playing with the ball with the more mentally challenging, but sedentary things such as colouring or sorting playing cards into suits. She films Feroze on her phone so she can send updates to their children and wonders if each time he does something successfully, if it will be the last.

“With raising children, you are constantly looking for the firsts. But now, I find myself looking for the lasts, and appreciating them.”

She still speaks with her social worker, connecting every two to three weeks, and she chats with the network of caregivers whom she met through AS York.

“It’s been difficult. If COVID had not come onto the scene, I would have arranged for a PSW (personal support worker) to come in to help out, but since they generally go into several different homes each day, I’m reluctant to increase the chance of infection. So I’m doing the best I can. Some days I do better than others.”

But by day’s end, Jennifer is exhausted.

“It’s harder to be patient and kind when I’m dead tired, both physically and mentally. But I have to make myself do something active with him, like bouncing a ball back and forth. Fortunately, I have great neighbours who are keeping in touch and dropping things off. And we’ve had a few socially distanced gatherings on the driveway. This helps.”

Before COVID, Jennifer said she knew that long-term care was an option for when she could no longer cope.

Now, due to outbreaks and the potential of developing the virus, it’s no longer on the table.

“The most worrying thing for me is that the virus will come roaring back in the fall, in which case long-term care will not be a good option any time in the near future. That worries me a lot. I don’t know what to do. I feel trapped. I can’t plan ahead. It’s unsettling.”

For now she is taking it day by day, growing in compassion, trying to be kind and more patient and accepting of the way things are.

“Getting frustrated and angry just makes things worse for both of us. I still haven’t learned how to execute this perfectly, but I’m getting there.”

She is also learning to give her husband no choice.

“In the past, I operated on giving him a choice between two things, but now I just have to tell him what to do. He can’t understand alternatives. So as a caregiver, I’m learning that you have to keep changing your approach to match the decline in cognitive ability. It’s challenging.”

And this time at home with her husband has made her “grateful for small mercies. Home, food, good neighbours. It has also given me even more respect and gratitude for the staff and volunteers at the D.A.Y. program. They are such special people.”

Writer's note – since this story was written, Feroze experienced further cognitive decline and has been admitted to a long-term care home.