Caring for elderly parents through the pandemic takes a toll

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Managing mental health and family life during the COVID-19 pandemic has been overwhelming for most Canadians, but those who are caring for an elderly parent have additional emotional and financial burdens to bear. Whether at home or in a care home environment, protecting a frail parent during the pandemic can be a frightening, lonely, and at times an emotionally rewarding experience.

“Grateful as we are, having my mother living at home with us, it can be challenging having an elderly parent live with you at the best of times,” said Jennifer Bell, a retired stay-at-home mother and former French teacher who, along with her husband, lawyer Robert Bell, have Jennifer’s mother, Eileen, in her nineties and with dementia, living with them in Toronto. “The pandemic has certainly made aspects more challenging – working from home and being in lock down with no breaks or reprieve from our mother and mother-in-law for many months.”

While she says having her mother live with them has been a challenge in some respects, Bell adds it has also been rewarding at times during the emotional rollercoaster of the pandemic.

“It has actually been a relief having my mother live with us, especially during those early days, weeks and months of the pandemic, pre-vaccines, when COVID was spreading in long-term care homes and so many elderly people were living in isolation, and too many were falling sick and dying,” explained Bell. “I would hear the numbers and thought it must be terrifying for family members whose loved ones were in long-term care. My mother was and still is living with us, under our roof. We were locked down together with her. She wasn’t isolated from us and, in fact, she actually saw more of us, more consistently than during pre-COVID times, when I was in and out of the house and Rob worked outside of the house.”

Scott Dickenson is the director of client services at Northwood Family Office. He works with families facing a number of life transition phases and helps them in the area of financial planning and investment management. When he speaks with clients who are caring for elderly parents, he tries to offer them ways to protect themselves.

“The pandemic has been challenging for all of us, but it has been doubly challenging for those of us who have been caring for an elderly or vulnerable family member during this stressful time,” said Dickenson.

When faced with the anxiety of protecting a frail parent, Dickenson says that it is important to hear from the elderly parent, too, whenever they are mentally and physically able to share their own opinion. Respecting their feelings can help in decision making.

“What can get lost in this calculation, is what the person being cared for actually wants,” said Dickenson. “We might fail to ask the relative what they want to do. When you’re 90 years old, you don’t know how many Christmases you might have left, and your personal viewpoint […] might be very different from the viewpoints of some of the younger members of the family.”

Like the Bells, auto broker Jim Doholis has been coping with the turbulent challenges of caring for his mother throughout the pandemic. Doholis’ mother has Alzheimer’s Disease, and he describes the feeling of navigating her additional needs as an eye-opening experience that had some downward spirals, as well as some emotional reconciliation.

As an only child, Doholis says he was not prepared for the amount of attention his mother would need, and that everything, including the tasks that most people take for granted – buying groceries, preparing meals and attending to work expectations – had to shift entirely to centre around his mother’s schedule and wellbeing.

While he was fortunate enough to have “an Angel by the name of Edith” that worked for what was then called Home and Community Care Central Local Health Integration Network (LHIN), who assessed his mother and found that she could benefit from three visits per day, seven days a week, there were still psychological and physical hurdles for both Doholis and his mother.

“I would have to say that the largest challenges have been keeping her isolated, mentally stimulated and nourished,” said Doholis, who also faced the stress of continuing to run his auto business at the same time. “These are not things that I could’ve done on my own. I have been grateful for all of the help that I have received from friends and family and know that it would not have been possible without the tireless support of PSW’s [personal care workers]. The pandemic impact for her psychologically has been terrible; she was always a very social person and that was stripped from her during a very fragile time.”

For Doholis, where his mother was unable to contribute to decision making, opening the lines of communication with her was one “blessing” in the darkness of the pandemic. When his mother’s condition declined dramatically and she was placed in long-term care, Doholis, initially, felt helpless and powerless.

“I could drive around and look at facilities and sit in the parking lots, stalking staff and asking questions with regards to turnover and how happy they were working there. I could ask people going in and out to visit their family members about the facility, but because of COVID, tours were not being conducted, and the thought of picking a residence for your loved one without being able to go into it was daunting, that there simply was no way to judge a place when you were their advocate.”

Finally, the facility that his mother had initially chosen had an opening, and she is now in safe, long-term care. Doholis says he is able to bring his dog to see his mother for outdoor visits, and they are able to have more of that communication time that Dickenson referred to.

“COVID-19 has had a number of impacts that have been incredibly negative, however, on the positive side, it made me slow down and put her needs ahead of others. I consider that part to be a privilege,” said Doholis.

While their experience has been around caring for a parent at home, Bell and her husband faced similar fears. Since the vaccines have been available, Bell says they have some relief with her brother and sister-in-law taking her mother for visits, and a professional caregiver can also provide relief, but prior to vaccinations, it was a terrifying experience.

“The main challenge has been twofold: Number one has been the huge responsibility of keeping my mother safe, especially pre-vaccines,” said Bell. “My husband and I did not allow ourselves to take any risks because of how vulnerable we knew my mother was. We didn’t go into grocery stores. We didn’t get together with anyone, even outdoors, for the longest time, even when permitted to do so. Even my brother and sister-in-law and their three teenage sons were only able to visit my mother from outside, through the window. [Secondly], there was absolutely no relief or help in caring for my mother, because we didn’t allow anyone near her or into the house. Caring for an elderly parent with dementia, 24/7, month after month, with no reprieve, is exhausting, mentally and physically.”

Ironically, her mother’s dementia has protected her from a level of trauma that the pandemic might have brought on.

“My mother’s dementia is such that she doesn’t realize there is a pandemic,” said Bell. “We have told her on occasion, but she forgets immediately […] “My mother doesn’t realize her world has gotten smaller. Although she is double vaccinated, I still don’t take my mother into stores or anywhere in public.”

She adds, “I really feel I escaped the terrible anxiety of having my mother separated and isolated from us. I felt terrible for those seniors and their families who were.”

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