I was first introduced to formal caregiving for a loved one at 20 years old when my grandmother started going in and out of the ICU. In sterile hospital rooms or during at-home physical and occupational therapies, I was both a scared, overwhelmed 20-something and my grandmother’s advocate, caretaker, and voice.
A portion of the responsibility of being my grandmother’s companion hadn’t been new to me. Since my mom (her daughter) passed away in 2003, when I was just 10 years old, my grandmother had become my legal guardian and I simultaneously became her part-time companion. Spending time with friends was less of an option for me after school, for instance, because I knew I had to sit with my grandmother.
As reports of what the recovery is like for those who survive COVID-19, I’ve thought often about how many people will be stepping into a role of caretaker—one they had never anticipated filling.
“In 2019, nearly 44 million Americans provided unpaid health-related care for their loved ones,” shares Dr. Shoshana Ungerleider, MD, internal medicine physician and founder of End Well. “Estimates now suggest that these numbers may have as much as doubled since the start of the COVID-19 pandemic and I think it has shined a light on the hidden world of what it means to be an ‘informal caregiver’ ([also known as] an unpaid family caregiver).”
Of those who self-identify as a caregiver, 10 million are millennials, according to a 2018 study by AARP. The balancing act of being a caretaker for a loved one who is learning to live again after COVID-19, or any disease, can be overwhelming, especially for those who are navigating the stress and newness of the responsibility for the first time.
“In 2019, nearly 44 million Americans provided unpaid health-related care for their loved ones. Estimates now suggest that these numbers may have as much as doubled since the start of the COVID-19 pandemic.” —Dr. Shoshana Ungerleider
Set yourself up for success by prioritizing self care
Dr. Ungerleider suggests prioritizing self-care to the best of your ability, especially because of the long list of other things you’ll need energy to be able to work through.
“Caregivers are more likely than non-caregivers to experience negative health effects like anxiety, depression, and chronic disease, and these impacts increase as the intensity of the caregiver experience escalates,” notes Dr. Ungerleider. “Many caregivers feel guilty when they take time out for themselves. But taking care of yourself should remain a top priority. Caring for yourself translates into better care for your loved one.”
Use technology to help support yourself through this process
After being her mom’s caregiver for 28 years, Lindsay Jurist-Rosner was inspired to co-found Wellthy, a platform dedicated to matching families or caretakers-in-need with a designated Care Coordinator.
“The most common question we get is from families who come to us in a reactive state after a hospitalization, diagnosis, or other event,” shares Jurist-Rosner. “Families say, ‘We don’t know where to start.’” Unlike becoming a parent or getting married, there are few guidelines to help caregivers learn what to do.
In 2013, when I became my grandmother’s “official” caregiver, I had no idea what I was doing and Google searches only added to my anxiety because it felt like there was so much to sift through. Taking advantage of resources like Wellthy can help ease the burden of having to search for what you need yourself.
“Wellthy has developed a 6-pillar framework for all families with complex, chronic, and ongoing care to help them think through all of the important aspects that they might not remember to think of,” explains Jurist-Rosner. ”There are legal, financial, in-home, housing, medical, and social/emotional considerations for every complex care situation.”
Give InKind, a platform dedicated to making it easier for your own community to support you, is also a good place to start. After experiencing a stillbirth, Laura Malcolm, the founder and CEO, realized that she had people in her own life who wanted to show up for her but didn’t know how. They were searching for answers.
“Nearly 50 percent of adults in their 40s and 50s are simultaneously caring for aging parents and children, and this has only gotten more challenging in the time of Coronavirus,” notes Malcolm. “Asking for help was already difficult and coordinating help that’s offered only adds increased burden. Give InKind offers peace of mind to caregivers because it creates a virtual village of people who are ready and willing to support people in the ways that they need it most, in the easiest way possible.”
Malcolm adds, “Patients regularly discharge from the hospital against medical advice because they are concerned about their pets. Putting needs on the calendar can help families who struggle with getting a patient to an appointment while simultaneously meeting other family member’s needs. Our favorite request to see on a calendar is a video call—making sure human connection is not lost is critical to our well-being!”
Don’t be afraid to ask questions or ask for help
Navigating hospital conversations can make anyone feel like a fish out of water. Dr. Ungerleider encourages all caretakers to push for clarity or more information when needed.
“As a family caregiver, know that it is critical that you have all of the right information,” notes Dr. Ungerleider. “Never be afraid to ask the healthcare provider to explain something, if needed. Also, recognize that you know your loved one best. If something seems off, definitely ask about it.”
Dr. Ungerleider recommends resources like the Family Caregiver Alliance and the Rosalynn Carter Institute for Caregiving to help bridge educational or financial gaps.
If you’re a friend who wants to help
Anyone who has taken on a caregiver role is experiencing an onslaught of information and new demands to their time. “Taking a shift from a caregiver can give them a much needed respite and time to focus on their own needs,” encourages Malcolm. “Stocking a freezer full of ready-to-heat meals means that if an appointment runs late or someone else needs to step in to help, dinner is already made. Sending a gift card for coffee or take-out can help alleviate financial stress for those that spend extra time in waiting rooms or driving to and from appointments.”
If you’re not able to contribute your time or money, remember that a simple phone call or a text can help the caregiver feel appreciated and loved.
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