As my mother's caregiver, I lived a secret double life. My mom battled progressive Multiple Sclerosis (MS), a debilitating chronic condition affecting the central nervous system, and I was her daughter, best friend, and caregiver for 28-years until she passed away in 2017. During a period in my 20's, I lived at home and was my mom's day-to-day caregiver while also working full time.
At this stage, I was just starting my career and still discovering my identity as a young adult. More than anything, I desperately wanted to share what I was going through at home with my mom — it was intensely challenging — but even more so I wanted to fit in! My friends and I would talk about weekend plans, who we were dating, and issues and hassles with bosses or colleagues at work. I never spoke of my life as my mom's caregiver. It wasn't cool and it wasn't common. And nobody knew how to respond. "I'm so sorry" was the extent of a well-meaning conversation. I spent decades as my mother's caregiver and while many moments were intensely gratifying and special, there were many moments that were devastatingly lonely, isolating, and traumatizing.
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When you become a new parent, there is an onslaught of resources to help you — new mom and new dad groups on Facebook, parenting YouTuber channels, books, in-person support groups, and often peers who love sharing their experiences. That same support system and societal embracement still does not happen for individuals caring for a parent or someone with an ongoing illness.
Caregiving can create both literal and physical isolation from peers. Caregivers without support — like an only child caring for a parent or a spouse caring for a partner — may be "on the clock" 24 hours a day. This means little to no time with friends, exercising, or simply alone resting and recharging. Time away from home is spent at doctors offices, treatment centers, or running errands — and social interaction is considerably reduced. Caregivers may find their only consistent companion is the care recipient.
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In my case, I told very few people from school or work about this huge part of my life and how challenging I found the day to day. My employer and colleagues did not know I was working the equivalent of two full-time jobs. The time I spent driving her to appointments, coordinating medications, helping with meal prep — all of that had to be squeezed in around my work schedule, leaving minimal time for my own personal life.
I am not the only one who has kept caregiving private. Research has found that 56% of caregivers say their work supervisors are not aware of their caregiving responsibilities. Between 40-70% of family caregivers experience clinical depression, and those experiencing isolation are at an increased risk of health problems like heart disease and dementia. That does not even touch on the financial toll created by having to change work schedules or take leave, which leads to an average annual outlay of $10,525 on top of out-of-pocket costs that caregivers spend on medical expenses, home modifications, and more.
The last few years have offered us an opportunity for empathy. We are all too familiar now with isolation and loneliness, having been separated from our family, friends, routines, and places of work through the pandemic. Social isolation worsened for some family caregivers, a group marked by loneliness that has gone largely unnoticed for decades, because caregiving became more complex and time consuming. While for others, the pandemic didn't change the ongoing isolation that they were already experiencing.
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As the population of caregivers grows (the number of people over the age of 65 is expected to double by 2050), we can anticipate an even larger mental health crisis for caregivers. More than one in five adults provided care to an adult or child with complicated care needs in 2020. One key to coping is connecting with people who understand the burdens, joys, exhaustion and love that goes into this role. Whether through support groups, forums, or chat rooms, individuals who are caregiving should have easily-accessible online or in-person communities.
Employers also have a role to play. Caregiving employees can be made to feel comfortable and empowered to perform their essential care responsibilities. Providing time to take care of doctor appointments or check-ins throughout the day is a great first step. And we are seeing employers go beyond that with supporting their employees through benefits like caregiving support services, support communities, and dedicated caregiving leave policies.
I am hopeful that we'll eventually see a new world where caregiving is accepted, normalized, and celebrated. A world where this highly valuable work goes from invisible to visible. And a world where caregivers get the support and acknowledgement they deserve.
