In July, my sister received a phone call from security at my mother’s condo building. A resident had found my mother wandering the lobby, asking people to take her back to the building she was standing in. When I arrived, I found her confused. She was silent. Frightened. “You look different,” she said as she tried to make sense of who I was. I called paramedics, who took her to hospital.
My mother was diagnosed with dementia a few years ago. For her it mostly took the form of worsened short-term memory, but while she presented as anxious and absent-minded, she was also social, spritely and funny. One of the best ways to keep dementia under control is socializing, and she was incredibly active in that regard: participating in line-dancing classes in her condo’s party room, playing ping pong, swimming, exercising and meeting friends. She lived with vigour, and that act of living kept her vibrant.
When the COVID-19 pandemic hit, my sister and I did the “responsible” thing for our elderly parents and told them to isolate at home. We would enter into their home wearing masks, but only just long enough to drop off groceries and leave.
For four months, my mother stayed at home with my father who is almost blind and deaf, and has low mobility. He provides her scant companionship because of his inability to really connect, and is generally fine just eating, sleeping and reading the newspaper. My mother, on the other hand, can no longer engage in hobbies performed alone. TV makes her dizzy. Reading is too hard on her eyes, and colouring books can’t hold her attention for long.
The means of social stimulation that she so desperately needs — line dancing, karaoke, lunches with friends — are no longer available to her due to the pandemic. Left alone, my mother sits in a chair and looks off into space. We didn’t realize at the time, but isolation would take a toll on my mother’s well-being and worsen her symptoms of dementia.
“Then I started to take her out on excursions, and that’s when things changed.”
My mother recovered from the incident at her condo lobby over the course of an evening in hospital, almost as if she had suddenly woken up. We chalked it up to dehydration, and I took her home and stayed the night to keep an eye on her. We thought the symptoms would pass.
The next day I couldn’t get her out of bed. She kept going back to sleep no matter what I tried. Telehealth suggested I use pain stimulus on her. I rubbed her ribcage, I pinched hard on her ear, but she wouldn’t respond. Her eyes just fluttered. I called paramedics again.
After a two-week stay in hospital, a couple of brain scans and a test for seizures, they discovered that she was perfectly fine, at least physically. The psychiatrists said it appeared that she was choosing not to wake up. So strong was her desire not to be in this world that she wanted to disappear from it.
The doctors told us that there were more and more people like my mother who were elderly and declining under lockdown. We learned that loneliness will only worsen dementia. There are numerous stories of relatively healthy elderly people fading away in retirement homes or long-term care facilities because they aren’t permitted to see family. Experts are advocating to have family considered primary caregivers in order for them to help with their family members who are dying in isolation.
Even if there weren’t outbreaks in Ontario nursing homes, they weren’t an option for us because of waiting lists. Social activities in retirement homes are also limited right now, so putting her in one wouldn’t help. We were provided a personal support worker who visits my mother for one hour a day. My mother would appear nervous and withdrawn, and would often reject care. The worker remarked that the only time my mother seemed happy was when I was there.
My sister and I faced a decision. We could protect my mother from the possibility of getting COVID-19 by isolating her from ourselves and her friends, but doing so would all but guarantee that my mother would disappear into herself forever.
When Ontario entered Stage 2 of reopening, things felt like they were more under control. My sister and I started visiting our parents three times a week, and now twice a week. I clean every Saturday and elicit my mother’s help, and I bring food and eat with her.
Those first two months, she was so fragile, and sad, and confused. Then I started to take her out on excursions, and that’s when things changed. With us back in her life, she is beginning to thrive again. Taking her out to eat on a patio brings her so much joy. Even eating McDonald’s in a park thrills her. Seeing art in galleries in the Distillery District makes her come alive with an interest and attentiveness that I hadn’t seen in months.
I know that many would say that I am taking a huge risk with my mother by exposing her to the possibility of coronavirus. While we both wear masks when indoors, and I try to stick with outdoor excursions and maintain a social distance, the reality is that it’s a risk that I have to take. In an attempt to keep her healthy, we had taken away any reason for her to live. Normally, there would be programs that could engage my mother in activities and outings, but all of those have shut down in the pandemic. We are very much on our own.
Since, parts of Ontario reverted to a modified Stage 2, and now Toronto is effectively on lockdown, I don’t know what to do. My visits give my mother something to look forward to, but dining indoors is once again prohibited and winter will make it more difficult to take my mother out of the house for stimulation.
I want to continue to give her hope, but we all must play a part. By taking this second lockdown seriously and adhering to masking and social distancing measures, we can return to a time when people like my mother can safely have the social contact they need. Loneliness is something many of us are suffering from, but for many of the elderly, it’s killing them.
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