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‘Literally, neither here nor there’: Caring for aging loved ones from a distance

A growing number of us are caring for aging parents and loved ones from a distance. Thanks in part to technology, intergenerational families and care networks separated by borders and oceans can stay connected and offer support, practically and emotionally. Add the social distancing of the global pandemic and even those of us living in the same cities as our parents might be able to relate to “caring from a distance.”

The accounts of lived experiences shared by a dozen distant caregivers in this article highlight the unique and invisible challenges they have faced and offer learning opportunities to build and bridge stronger families and networks.

The different faces of guilt

A sentiment shared by everyone interviewed is guilt. Often, it is the guilt of not living closer, of not being able to help aging loved ones more frequently.

Danielle from Ottawa still feels retrospective guilt for “not being around when (my parents) were ‘good,’” during the five years she lived in Vancouver and had two children. She has since moved back to Ontario but still lives a couple of hours away from her parents – close enough to visit a few times each month, but far enough that she can’t just swing by without planning with her partner and daughters.

For distant care partners, the guilt of not living closer can be compounded by feeling “literally, neither here nor there.” Mark from Montreal explains: “I’m not there to help my parents in person, but I spend so much time and energy worrying and making up for it that I also don’t feel fully present for my wife and kids.”

Like many others, Mark notes that he and his family haven’t taken a “real vacation” since his parents’ health started declining. Instead, most of their time off has been spent visiting his parents and fostering his children’s bonds with their grandparents. And whenever he’s gone to visit his parents alone, he feels guilty leaving his wife to take care of their three kids alone. With his children’s growing friendships and activities, he is conflicted about pulling them out of weekend birthday parties, sleepovers and sports tournaments. “It’s like I always have to choose.” He also wonders how they will manage when her parents nearby start needing help.

David from Hong Kong has grappled with guilt and a sense of indebtedness toward his sister, Fay, who lives a 30-minute drive from their parents in Toronto. Fay “runs around most days,” checking in on them, cooking them meals and taking them to more and more medical appointments. She has blown through her sick days and vacation days. COVID-19 restrictions prevented David from travelling to Toronto for two years and he is still hesitant, worrying he will catch COVID and pass it onto his baby girl. On top of day-to-day practical support, David and others recognize that the local family care partner takes on the role of “conduit,” as Wendy from Toronto puts it, sharing updates and fielding communications between the parents and distant family members.

Even for those committing much of their vacation time to longer visits, there may be a lingering sense of not doing enough.

“I feel guilty because it seems so unfair,” Derek from California says. Even for those committing much of their vacation time to longer visits, there may be a lingering sense of not doing enough. Says David: “Even when we had some chances to visit my siblings we could not stay long, two weeks at most. You can’t help much in a two-week visit.”

Invisible efforts from afar

Distant care partners may grapple with judgment and criticism from other family members or friends. Jessica from New York, whose mother was diagnosed with brain cancer, says: “Personally, I get a lot of questions or comments like, ‘Have you ever thought of moving back (to Toronto) to help your parents?’ Honestly, I have thought and considered this option countless times, and I am still counting.” But it is not an easy decision since she and her family have been living in New York for more than 10 years, she and her husband have established careers there, and their children are in school and have busy social lives.

Jessica and others describe a variety of ways they overcome distance to contribute and compensate for their physical absence – much of which may go unseen by others.

Depending on needs, caring from a distance might look like calling daily, setting up regular video meetings or staying on top of a family group chat to show care and provide support. “When you have that regular communication going, you will have a chance to show at least emotional involvement,” Derek from California shares. “Showing involvement requires action sometimes.”

There’s ordering food, household supplies and helping loved ones who are less tech savvy make online purchases. Some distant care partners choose to step up to pay for these purchases, or other health- or care-related expenses, in lieu of contributing their time.

When a loved one experiences a new diagnosis, health event or emergency, there is often a cascade of new needs that demand research and education. Most of the people we interviewed recounted countless hours researching, negotiating, arranging services and keeping track of medical care (e.g., medication lists, medical histories, appointments). In Ontario, for example, services are notoriously hard to know about and access. Family care partners often tell us that they found services through chance or ‘back door’ routes, or socially through word-of-mouth. Especially for chronic care regimens that can be “technical” in nature (e.g., diabetes, dialysis, post-surgical care regimens), family care partners who are most knowledgeable about routines usually bear the responsibility of managing, reminding, checking in and instructing other family members or formal caregivers.

“I took on everything that could be done remotely.”

“I took on everything that could be done remotely,” says Rishi from Toronto, recalling when she cared for her parents while living in California for ten years. On top of being a tech executive, she enumerated a long list of care responsibilities after her father was diagnosed with Parkinson’s: communicating with multiple medical and health practitioners; doing endless research related to Parkinson’s care and local services; hiring a live-in caregiver with its mountain of administrative if hiring someone who is foreign; ordering meals; buying “all the shit you can imagine” (hospital bed, wheelchairs, stair lifts, other Amazon items) to modify her parents’ house; and keeping a daily pulse on her parents with phone calls at least once a day. The live-in caregiver, Grace, that Rishi hired became her “eyes, ears, and hands.” Together, Rishi and Grace crafted, adapted and mastered her dad’s daily care routine.

Jessica from New York elaborates on how the invisible effort extends to other aspects of her life: “Caring for my parents from a distance is the hardest job I have had. It takes a lot of planning, time commitment and foundation-building with my spouse to make sure that there is no resentment in the future… I work very hard on our marriage, compensate for other areas, and ease up some of my husband’s load. I also check in on my in-laws and reassure them that we try our best to spend as much time as possible with them.”

Relating

Even in communicative families, it can be hard for family members to appreciate each other’s unique perspectives and experiences – either close up or from a distance. The demands and stresses of caring may strain relationships between adult siblings. “I sense that my local siblings resent me and don’t see how involved I try to be,” Derek from California shares.

As previous articles in this series outlined, caring tends to stoke value differences when it comes to health and financial decisions. Those who receive second-hand information may wonder about, criticize or even fight certain decisions head-on.

“My sisters and I probably exchanged 5,000 WhatsApp messages when Mom was in the hospital.”

Catharine from Chicago recalls: “My sisters and I probably exchanged 5,000 WhatsApp messages when Mom was in the hospital. It was my own way of knowing what was happening and showing my love from across the world. It got to the point where I was glued to my phone, scared to miss responding to anything. I didn’t want them to think I didn’t care. Tensions were so high that I had to be careful about what to say and what not to say to my sister who was on the ground with him.”

Local care partners, who have a “zoomed-in view” dealing with daily or weekly care routines, may feel that distant care partners don’t fully appreciate the nuances and why they make certain decisions.

“When you are not present, you simply don’t have an intuition for what your loved one needs and/or appreciate their health status fully,” Wendy from Toronto says.

Some distant care partners, however, challenge this, especially those like Rishi, who communicated daily from California with her parents and live-in caregivers and has always known every detail of their daily routines.

There’s also the issue of balancing concern for loved one’s health and safety while respecting their autonomy.

Jessica from New York explains: “My dad has repeatedly expressed to me that he very much likes doing things himself. I think it gives him a sense of purpose and usefulness and that he is still strong and healthy enough to take care of himself and my mom. I think it is important to also listen to what your parents want and let them know that their wants and needs are very much valued.”

For some distant care partners, respecting their parents’ autonomy (e.g., when parents resist in-home caregivers) can mean living in chronic anxiety, worried about the next fall or emergency department visit and how to respond from a distance. It is all too common for social conversations (e.g., “What did you do this weekend?”) to be displaced by “transactional” ones (e.g., “What time did you take your meds?”) that can erode the quality of even close relationships.

Bridging distance and building care teams

Our interviewees shared the importance of letting go, making peace and realizing that everyone is doing their best what Wendy from Toronto calls “grace.” Across families, there are often different values, perspectives and circumstances at play.

“Understanding that we’re looking at the situation from different perspectives, and we each have something different to offer, is a good starting point,” says Annie from Toronto.

Some families have learned to embrace their differences and approach caring as a team. Some learn that their greatest value is phoning regularly. Others gravitate toward management or financial roles, especially when they are skilled in these matters or have a less emotional communication style. Some use challenging care circumstances to learn and grow together, exploring better ways of communicating and enacting shared family values.

“The unsettling feeling of being far away from my elderly parents is always there.” Jessica from New York says. To that, there may be no easy solution.

However, prioritizing grace, empathy and teamwork may open meaningful opportunities for families and care networks to grow through the tough times.

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Authors

Amy Hwang

Contributor

Amy Hwang is a second-generation Chinese Canadian mother, care partner, social entrepreneur, and aging + design researcher. Her mission is to help individuals, families, and communities co-create more meaningful relationships as they age together.

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