Victoria Lougheed with her daughter
I’m the ham in a multi-generational sandwich as a caregiver. I am a caregiver for, or part of the caregiving team for a number of care recipients from 16 to 84. I am a direct caregiver and a long-distance caregiver. I am an advocate, a problem solver, a voice in the storm, and sometimes a voice of reason. It’s exhausting – and I wouldn’t give it up for anything.
My daughter, 16, has autism and an intellectual disability. She will need support throughout her adult life, and we are currently starting the process of transitioning from child and youth provincial supports to adult supports here in BC. To give you an idea of the complexity, I feel like I’ve gotten a PhD in advocacy over the 16 years I’ve been her mother. And it looks like I’ll need another PhD to navigate this next phase. As she’s moved towards adulthood, she’s struggled more and more with overwhelm due to her intellectual disability and the anxiety that comes along with it. I make appointments, try to figure out what services will benefit her, and muddle through figuring things out as I go along. I try to make her world an inviting place, free of too many stresses and challenges. I feel like I am in a chess game, constantly trying to think one move ahead and often getting it wrong.
My parents are in their 80s and doing well, but as a family, we are having conversations about how to help them age in place in their Alberta home. Living here in BC, my sister and I try to provide support from a distance and often feel inadequate to the task. We try to support them, and our sister in Alberta who lives nearby and provides most of the day-to-day support they require. My parents are very independent people who have lived lives of adventure and passion. They want to maintain as much control over their lives as possible and we want that for them, too. But we want everyone to be safe, which meant some difficult recent conversations around area rugs and tripping hazards. It also meant some uncomfortable talk about how a walker is a tool to increase mobility and keep one safe from a fall that could end all their hopes of aging in place.
As a caregiver, I can tell you that I’m emotionally drained, physically exhausted, and often have sleepless nights. I am terrible at asking for help. I’m a classic Gen Xer, who stays under the radar, gets things done, and doesn’t make a fuss. Not so long ago, that changed when I became a care recipient after my first rheumatoid arthritis flare meant I couldn’t move without support. I learned the value of having someone with me, in this case my husband, who could help me. I learned how vulnerable it feels to be a care recipient and this gave me valuable perspective. I can’t do it all anymore. I need a team around me to make sure I can be the caregiver I want to be.
Caregiving has changed my life. I have a different career than I had originally imagined for myself. It’s changed the way I see the world. We aren’t individuals. We are all connected to each other by the love and care we give and receive. I have found community among parents who also have kids with special needs. I’ve grown closer to siblings because we share the same concern for our parents. I’ve seen the value of giving care and ensuring someone I love has the love, support, independence, and security they need. Yes, it’s been a lot of work to take on. Absolutely, it’s been tiring and sometimes overwhelming. But I would not change it. I have learned so much about myself and the people I care for. It’s been the best lesson of my life.
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Victoria Lougheed is a caregiver and a full-time employed worker. She advocates for neurodivergent youth and adults and for increased awareness of invisible disabilities. She spends her non-working hours building Lego with her kids, walking her dog (preferably along beaches), eating chocolate, and enjoying the company of friends and family.
Editor’s Note: The views expressed in each our Caregiver Stories are the author’s own, and do not necessarily represent those of FCBC.