Helpers and Caregivers Living with Long COVID
Prior to the pandemic, some of our participants were providing care to elderly parents, siblings, or children with special needs. Their caregiving responsibilities continued despite concerns for their own health due to long COVID. Others did not have regular caregiving roles but said they liked to help other people out whenever they could. Our participants talked about how their ability to provide care and to help others was affected by long COVID and how they tried to continue caring despite the limitations on their own health.
Several participants expressed regret that they were simply unable to help, or be present for, others in the ways they had before. Katherine’s mother has dementia and lives in another province. She told us, “I probably would have visited my mother in Manitoba more often this year, because she is not doing so great … She’s in full-time care, and I don’t know how much longer she’ll be with me. But travelling is so exhausting … I can’t imagine the 14-hour drive from Edmonton to Winnipeg right now.” Others talked about how caregiving now involved calculations of risk and potential harm to themselves. For example, Lesley worries that her elderly father may expose her to COVID again. “I’m trying to care for him and make sure that nothing happens to him, while at the same time his exposure level is much higher than mine … “You’ve just been on the subway and … you forgot to wash your hands, you forgot to wear your mask, dad. So there’s a bit of a juggle with all of that.”
Ruth finds it hard that she is now the one who needs help.
Transcript
But for my family, I used to run around all day. I used to go to work or see my mom, help her out with something, come back to things here, be there for friends, basically literally be there for friends and now I’m just not [inaudible] really, physically. And […]
Coucoute used to send money to her family in Haiti. She can no longer do this because she has been unable to work.
Written testimony
J’ai de la famille en Haïti qui viennent souvent mais pour l’instant je n’ai pas aidé vraiment, parce que je n’arrive pas à travailler comme il faut. L’argent que ça va me donner, c’est juste pour payer mes factures, mes bills … Il y a quelque chose que tu pouvais faire avant que tu ne peux pas faire maintenant, parce que pas assez d’argent … Je n’arrive pas avec mon salaire que j’ai, je fais du temps supplémentaire, tu comprends. Fait que ça je peux utiliser pour aider quelqu’un, je peux essayer d’envoyer de l’argent en Haïti. Mais maintenant je ne travaille pas, comment je peux faire ça? Je n’arrive pas … je suis malade et ma famille en Haïti.
[I have family in Haiti who come often, but for the moment I haven’t really helped out, because I can’t work properly. The money this will give me is just to pay my bills … There’s something you could do before that you can’t do now, because you don’t have enough money … I can’t make it on the salary I have. I work overtime, you understand. So I can use it to help someone, I can try to send money to Haiti. But now I’m not working, how can I do that? I just can’t … I’m sick and my family’s in Haiti.] Translation from the original French.
Carrie 2 continues to care for her father but says "I'm not the daughter I wish I could be."
Transcript
He lives over an hour away … So to drive there, do stuff with him and to come home, doesn’t allow me to do the things that I totally need to do, to take care of myself. And so I see him a lot less frequently. I’m doing a lot […]
Maggie asks, "What happens when the caregiver becomes the patient?"
Transcript
I care for my mother who lives with me. She’s 90 years old. Like any 90-year-old, I physically need to help her. Just even getting her in and out of the house takes, not just strength, but some perseverance. She has some dementia and she’s actually very good for a […]