Caregiving in Time of COVID-19 Remains a ‘Crisis on Top of Crises,’ but Hope Shines Through

Ana van Koeverden, 15, has lived with brain cancer since she was 3. To protect her from COVID-19 ahead of a successful surgery in July, her whole family, including Calla, her Wirehaired Pointing Griffon, was on lockdown for nearly three months.

For every patient whose health is the topic of a CaringBridge site there is a family caregiver. Most times, more than one.

And with 1 in 5 Americans now counted as family caregivers—53 million across the country, according to the Caregiving in the U.S. 2020 report by AARP and the National Alliance for Caregiving—it’s likely you are, or were, a caregiver. Or that you know one.

Caregiving has always been a hard job. But adding a pandemic to the mix has made sadly true something nearly every family caregiver hears, at one time or another: “I don’t know how you manage.”

At CaringBridge, though, where 300,000 people visit daily, we have a broad sense of how family caregivers have been managing. And no one is calling it easy. Facing coronavirus and/or protecting patients from it has been described as “a crisis on top of crises.”

Christin and Paul Gigstad with their son, Carson, showing a 3-D print of his original heart, given as a gift by Mayo Clinic on the first anniversary of Carson’s heart transplant.

Research by the national consulting firm Magid, with whom CaringBridge works, shows people struggling with negative emotions related to the pandemic: 40 percent said they feel anxious; 35 percent are stressed and uneasy; 29 percent reported feeling isolated.

That’s how many family caregivers likely would have described themselves before “lockdown” became a way of life. Here’s a glimpse of what stress and uneasiness look like for some caregivers using CaringBridge:

• A daughter whose mom lives in a memory-care facility hasn’t been able to visit in more than 5 months;

• A mother whose son is higher-risk for COVID-19 after a heart transplant said she feels like she sleeps with one eye open in case anything might happen;

• Parents are trying to hold onto precious vacation and sick time after their toddler son’s heart surgery was rescheduled for a second time, due to virus protocols.

Worst of all for family caregivers may be isolation, which CaringBridge exists to fight. Like you, we believe no one should go through a health journey alone. And with 7 in 10 sites started by caregivers on behalf of patients—a heartbreaking number created this year for those hospitalized with COVID-19—making the road less lonely for caregivers is always top-of-mind.

If there is a universal truth about family caregivers, it is that asking for help is hard. A pre-pandemic survey of CaringBridge users showed that while 53 percent could have used help with food, chores, transportation and finances, they very seldom asked.

Put never-ending quarantine, fear of the unknown and lack of control on top of that, and caring for caregivers through the unknown needs to be a top priority.

But moments of grace and hope shine through. On Day 26 of family quarantine before her teenage daughter, Ana, had surgery for brain cancer, Heather van Koeverden of Rochester, MN, wrote, “I don’t understand the ‘why’s’ of COVID-19, cancer, and many other complexities. I just know I must be grateful to be home right now, living the moments we have been given.”

Amy Beasley was mom, caregiver and baseball coach for her son, Andre, during his years of treatment for kidney cancer.  Now 16, Andre’s health is stable. Also pictured are Andre’s brothers Austin and AJ, at right.

And Amy Beasley of Somerset, WI, a CaringBridge author since 2013, when her son, Andre, was treated for cancer, and more recently when her dad had a stroke, has this message for caregivers: “You are a lot stronger than you ever thought you were. So many people say, ‘Oh, I could never be as strong as you are going through this.’ But you have no choice. You will find a strength you never knew you had. I did, and you will, too.”

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