‘A phone call and a wave’: A caregiver’s story

Every day, Kim Neudorf leaves her Prince Albert, Saskatchewan home for the 30-minute walk that takes her to the retirement home where her mother Pearl lives. The home, of course, is now under limited visitation rules because of the COVID-19 pandemic. When Kim arrives, she calls her mother from a nearby walking path. Pearl comes out onto her balcony, and daughter and mother speak on the phone, waving and smiling and pretending that this makes up for not being in the same room. This is what having a  parent living with frailty can look like in the time of COVID-19.

“My mother has dementia, so she only retains information for a few minutes,” says Kim. “She tries to remember to sanitize her hands when she returns from picking up the mail or after a short walk in the hallway, but it’s hard. It is also hard for her to remember the rules of the retirement home. She is in good hands and I know they are taking the best care of her they can, but I really do worry.”

Kim worries about her mother’s limited exercise, potential errors taking medications, and some aspects of her personal care. She worries about her being lonely and sad. And more than anything, she worries about her getting the virus.

“What will happen to her? She is becoming more frail, and I obviously worry that could increase the danger. I have prepared an isolation room in our home, but is that the right thing? I don’t know if I could care for her properly in my home, and I worry about how it would be for her in the hospital.”

Dr. John Muscedere has heard many stories like this and has heard those same worries and concerns. Dr. Muscedere is the Scientific Director of the Canadian Frailty Network (CFN), which works to improve care for older adults living with frailty, support their family and friend caregivers, educate Canadians about the critical fact that in many cases frailty can be avoided, and teach them how to do so.

CFN will be funding important research into the interaction between frailty and COVID-19, in the hopes that it will yield information about why older adults living with frailty are more likely to experience bad health outcomes from COVID-19. Older adults with chronic health conditions are the primary casualty of this pandemic, whether they live at home or in long-term care. Recent evidence has shown that the social and healthcare systems in place need to be reimagined so that a holistic, interdisciplinary and patient-centred approach to frailty care is available to the most vulnerable individuals.

“We know that older adults living with frailty are the most vulnerable to COVID-19,” says Dr. Muscedere. “That is a scary truth that people with frailty, and those who care for them, have to live with. We need to do research into this, so we all know more about how COVID-19 targets those with frailty. Because the more we know, the more we can prepare.”

Kim Neudorf has a nursing background and has done advocacy work for CFN while sitting on one of their Advisory Committees. She knows about frailty, and she is a big supporter of the kind of research Dr. Muscedere is looking into.

“We definitely need to know more, about all of this. How do we keep frail people from catching this thing, but while we are keeping them safe, how do we look after their physical and emotional needs? Keeping a physical distance from one another is not in our DNA, and we can never lose sight of the compassion piece. So, we have a lot to do.”

In the meantime, the best Kim and Pearl can do is a phone call and a wave.