Caregiving from Afar

When Karla Wilson’s mother, Karen, started showing symptoms of dementia in 2010, Wilson knew that she wanted to be involved in her care. But with Karen and her other two adult children living in Toronto and Wilson on the other side of the country in Victoria, B.C., taking on a traditional family caregiver role just wasn’t possible.

Now, over a decade since their mom started showing signs of cognitive decline, Wilson and her siblings have worked out a system where they are all involved in her care, whether it’s from the same house or 4,000 kilometres away.

Recently, Karen moved from the home where she raised her family to live with her eldest daughter in Toronto. Wilson does everything she can to provide support remotely from Victoria. Here, in her own words, Wilson shares how she maintains a long-distance caregiver relationship with her beloved mom:

"The positive part is that I’m able to go and see things more objectively in terms of my mom’s disease progression and in terms of decline in cognition, her ability to be safe and her energy and health."

– Karla Wilson

A different kind of care

“Over the years, with me living in British Columbia, I’ve obviously been very far away from the situation. The bad part about that is that I haven’t been able to be a care provider to Mom on a day-to-day basis and I can’t physically be there for her. But the positive part is that I’m able to go and see things more objectively in terms of my mom’s disease progression and in terms of decline in cognition, her ability to be safe and her energy and health.

Karla Wilson

“Also, I've been able to connect with her via telephone. We weren't able to get in early enough to teach her how to use an iPad and do video calling, but I phone about three times a week now and send letters or cards whenever I’m able. I’ve also created photo books of the family, which she really enjoys.”

Finding creative solutions

“In 2019 and 2020 my family went out, not only to see Mom in Toronto, but to take her out of the home and spend time in a different part of Ontario. We rented a cabin with my siblings and their families, trying to create memories and moments where my mom felt connected and loved and like she was with all her favourite people in the world. My sister and I try to think creatively about the things that I can provide as a long-distance caregiver, which never feels like enough because I’m not there.

“I’m not going to say I feel guilty, because that’s a terrible emotion, but I have a strong desire to assist with the situation. I want to make sure my mom is in the best possible situation and that my sister also feels supported and cared for.”

Closing the geographic gap

“I spend a lot of time in advance preparing for my trips, which I try to take to Ontario every six months or so, because there’s always a job to do. It’s not just sitting and visiting my mom — there’s always something to do to support and help.

“My role now is to start looking for long-term care and figure out what will be the best care homes to visit when I go on my next trip. I also want to focus on how I can help my sister by taking some of the burden of being a full-time family caregiver off of her. From afar, I can offer my time in that way. Through technology I can set up appointments, do some research on whatever needs to be done next, and prep myself far in advance.

“It’s amazing how much activity can be crammed into the space of a week or 10 days. I’m sure I can be perceived as a bit of a hurricane when I come in because I bring in so much change.”

Spending time intentionally

“On my future trips I’ll be asking my sister when she needs some relief. My life and my travel plans revolve around what my mom needs and how to support my sister best. I work in communications for Family Caregivers of B.C. and made a very conscious choice to apply for this position in 2021. It’s the ideal organizational fit for this time in my life because of the support it offers in terms of balancing work and care.

“When I’m in Ontario I can work full-time from my sister’s home. The benefits of a caregiver-friendly workplace have allowed me to plan my year ahead as a long-distance caregiver. I wish all organizations could be as supportive to family caregivers in the workplace. I give my all to my organization because I recognize and appreciate the support and flexibility they offer me, and I clearly believe in their mission to improve the quality of life of family and friend caregivers.”

"There’s value in all of the roles that my siblings and I play ... It’s interesting how we can all collaborate and use our different skill sets and roles to make things work for Mom."

– Karla Wilson

Everyone plays their part

“There’s value in all of the roles that my siblings and I play. My brother offers a tremendous amount of companionship, love and activities to keep my mom stimulated and connected with her family. My sister is the boots-on-the-ground person, making sure things get done. And I’m the big picture change-maker. I get to see things from a different perspective. It’s interesting how we can all collaborate and use our different skill sets and roles to make things work for Mom.

“My dad passed away from cancer when I was 23 and I really see the value of spending time with the people I love and how short life really is. I know that I will never regret spending money or vacation time to be with my mother while we still have her. I know that the disease is progressive, but she still recognizes all of us. She still feels love and joy and we have a lot of great laughs and fun times together.”

Wilson's tips for long-distance caregiving

• Use technology. Set up a regular video call (if your loved one is able) or ask friends or relatives who are with your loved one to call you when they are together.
• Create memories when you visit. Take your loved one on a special excursion or out to a favourite restaurant. Take as many photos as possible.
• Make a photo book, album or calendar of memories of your time together. Alternatively, print photos and send them in regular intervals to remind your loved one that you’re thinking of them.
• Write and send emails or letters, letting your loved one know what’s happening in your life. Even just telling them what you’ve been doing during the week can help them feel connected.
• Keep note of your loved one’s important appointments or events. Follow up with them afterwards for updates. Even if remembering the details is difficult for your loved one, it’s kind to show you remembered details of their day.
• When you’re able to see your loved one in-person, try your best to be present on their schedule. Spend quality time together, rather than making your visit a whirlwind of activity.
• Send or bring a gift from your hometown — something as simple as a fridge magnet can remind your loved one of you.
• Engage your own family in long-distance caregiving. If you have children, ask them to write letters or create some artwork, depending on their ages.