Karla Wilson (far left) with her Mom and Sister
In 2003, I chose to move to Vancouver Island. I had grown up in the suburbs of Toronto, then traveled and lived in Australia for three years after finishing my university degree. When I returned to Canada, I was searching out the warmest climate possible. Victoria fit the bill, so I found an apartment and a full-time job and started to put down roots. I traveled to Ontario twice yearly to visit family, and happily hosted family members willing to make the journey westward to see me.
In 2000, my father had died of kidney cancer, leaving my mother alone in our family home. At the time, my sister and her husband lived nearby, and my brother lived downtown. Mom filled the void of my father’s loss with her two grandchildren. She also made sure to visit me in Victoria at least yearly, sometimes bringing a friend so they could explore the beauty of the city together.
In 2010, my daughter was born. Mom traveled from Ontario to be present for the birth and stayed on for a month after. She helped with cooking, cleaning, copious amounts of baby-snuggling, and ensured I was getting enough rest. It was at this time that I started noticing the subtle changes in her. She had lost confidence in driving, and would remove herself from social situations in a way she hadn’t done before. None of this alarmed me. It was only afterwards that I could point to this time as the start of her disease.
Mom didn’t return to Victoria again after that visit. In 2013, she was diagnosed with mild cognitive impairment, likely due to Alzheimer’s.
One year, Mom got mixed up and forgot to pick me up from the airport. On a subsequent trip, I helped to dispose of her car after her driver’s license was revoked, for fear she would “forget” and go for a drive. The visits to Mom’s, where she had so often baked and cooked for me and my family, came to an end. She declined our invites to leave her home and be a tourist with my family, and became most comfortable in her own living room, sitting in her leather La-Z-Boy recliner. One year, as I laced up a pair of runners for her in a shoe store, I recognized our role reversals with a clarity I hadn’t seen before.
There is an inherent level of guilt that accompanies long-distance caregiving. A sense of not doing enough, not being enough, and questioning one’s decision to have ever left a care recipient in the first place. My mom never made me feel guilty for choosing my own path, but she never needed to – I did the job well enough, myself. Being over 4,000 kilometers away had many drawbacks, but I tried to find a silver lining in my role. As a long-distance caregiver, I was able see Mom’s decline more clearly than my siblings, who were with her all the time. Just as when one stands too close to a painting and the full image can’t be seen, the same might be true of seeing someone day-to-day. In this way, I began to carve out my role in the joint caregiving effort, knowing that there were some things I just wasn’t able to do from afar.
When the Covid-19 pandemic hit, I was not able to commit to the bi-annual visits with my family. I managed one visit home, both 2020 and 2021, where I continued to see the step downwards in my sweet mother’s cognitive decline. And with each step, we re-evaluated her needs and our abilities. We instituted Meals on Wheels daily lunch delivery to her home. Mail was re-routed to my sister’s house when bills stopped being paid. Grocery delivery made it so she didn’t have to venture to the supermarket. Speaking to her neighbours and implementing a communal set of eyes on her home relieved a lot of our worry.
In January 2022, Mom’s physical health dropped suddenly. At the point where my sister and I hadn’t been able to reach her by phone for days, we took swift action. My sister and aunt visited Mom within a day of one another, and I booked a flight to Toronto that same week. I set up appointments from Victoria so that we could interview potential home care service providers when I arrived. I tried to navigate Ontario’s healthcare system from afar, to understand what services were available and where we should start.
Soon after I arrived in Toronto, my sister and I decided on home care service provider for Mom. It was the first time Mom was amenable to receiving any help, which was monumental.
Two days before Mom’s new personal support worker was scheduled to arrive for her visit, my sister phoned me and said she couldn’t have a stranger looking after Mom – that she wanted to do it herself. I helped with Mom’s transition to my sister’s house, none of us knowing this might become the new normal. After a multitude of medical appointments and home visits by community services, we learned that Mom’s dementia had moved from the mild to moderate phase.
In the moment my sister decided to move Mom in with her, she became one of our country’s estimated 7.8 million family caregivers. As a mother herself, raising two busy teenagers, she and her husband now also care for an aging parent with dementia. I’m in touch with my sister daily and I am aware of the work she is doing. I can hear her stress, yet I can also hear the gratitude she feels to have this time with our mother and assume the role my mother always had. While the transition hasn’t been simple, my mom has allowed this role reversal and continues to live her life with grace.
I call. My husband calls. My daughter and I make video calls. I’ve made photo books of the family. I send printed photos. I write letters. I send cards and gifts on special occasions. I’ve already booked two more flights to Toronto before this summer ends, one of which will offer respite to my sister and her family. I am peacefully resolved in knowing we won’t take family vacations, knowing that our precious vacation days and dollars should be directed towards going to Ontario as often as possible. And yet, no matter how much I do or plan to do, it will never seem like enough.
My sister and I always said that a crisis would be what removed Mom from our family home – a house in the Toronto suburbs filled with childhood memories of joyful Christmas mornings, Easter egg hunts, countless birthday celebrations, and the regular day-to-day flurry of family activity. But, through crisis we are often able to see a different way forward. It’s a new way of being, and it’s always only ‘for now’.
I am a long-distance caregiver. My job, as I see is, is to ensure my sister and her family are supported – and to support my mom as her disease progresses. What I’ve learned, through this journey, is that through Mom’s grace, kindness, and caring, she has raised children who aren’t only just willing, but who want to care for her – who find it a privilege to do so, even from 4,000 kilometres away.
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Karla Wilson is the Communications Lead for Family Caregivers of BC. She is a mother to her 12-year-old daughter and five-year-old Havanese. In her spare time, she practices yoga, works as a labourer on her husband’s numerous home renovation projects, and writes for pleasure.
Karla’s long-distance caregiving experience was recently featured in the Spring/Summer issue of Dementia Connections magazine (Pages 23-25).
Editor’s Note: The views expressed in each our Caregiver Stories are the author’s own, and do not necessarily represent those of FCBC.