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The COVID-19 pandemic has forced many of us to give up on some of life’s simple freedoms, making an experience that caregivers have endured all along a sudden reality for just about everyone.
COVID-19 has sort of leveled the playing field, said Nadine Roberts Cornish, a gerontologist and author — it has given us an opportunity to experience what our lives might be like if we have to take on the responsibility of caring for a loved one.
“It’s important that we understand the role of a caregiver, but also our role in supporting the caregivers in our lives,” she said.
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That’s why caregivers and anyone who anticipates caregiving in the future are encouraged to join a special webinar discussion, “The Hidden Crisis Facing Family Caregivers During COVID-19,” hosted by Renew Senior Communities in partnership with The Aspen Times, on Friday, May 8 (see factbox).
The discussion will feature Cornish and will be moderated by Renew CEO Lee Tuchfarber and Amelia Schafer, executive director of the Alzheimer’s Association of Colorado.
An opportunity to have tough conversations
Many caregivers find themselves in the role suddenly, Cornish said — they’re going about their lives and then the phone rings and it changes everything.
“Individuals who have had those conversations in advance understand and know what their loved ones’ wishes are — and they’re better equipped to handle the responsibility of caregiving,” she said.
With the situation we’re all facing due to COVID-19, many people have found themselves thinking about all the things they should have taken care of, Cornish said.
“Let’s come to grips with our mortality and have those difficult conversations and put our affairs in order,” she said. “It makes caregiving so much easier because you don’t have the responsibility of deciding those things for someone.”
Cornish cared for her mother for the last 15 years of her life and was uniquely qualified to navigate the waters thanks to a background in public health. She always knew she’d be her mother’s caregiver someday — they had many conversations about it over the years – but she didn’t know how long it would last or exactly what to expect.
After her mother died, Cornish realized there were so many caregivers out there who needed guidance; she launched The Caregiver’s Guardian to provide caregiving consulting and education about a year later.
The importance of self-care
The work Schafer does at the Colorado chapter of the Alzheimer’s Association largely focuses on supporting and educating caregivers. There are an estimated 16.3 million Alzheimer’s caregivers in the United States, roughly 5 percent of the population.
“We call them unpaid caregivers, because almost always these are people – family and friends – who are not getting compensated,” Schafer said.
Schafer uses the analogy of the safety briefing on an airplane to describe the importance of self-care for caregivers — the flight attendant tells us to put an oxygen mask on ourselves first before assisting someone else.
“We try not to lecture people to take care of themselves, we just try to make those resources available to them,” Schafer said.
Cornish calls self-care for caregivers “non-negotiable.” She said it’s such a necessity that it’s the foundation for all of her work.
“If you’re claiming to care for someone else and you’re neglecting yourself, then you’re not really taking care of that person,” Cornish said. “You’re under the illusion you’re taking care of somebody.”
Cornish said self-care takes on different meanings for different people. She has one client who gets outside every day to pull weeds in her yard, while another client enjoys sitting by the window undisturbed to enjoy the view.
Whether it’s exercise, reading books, listening to music or something else, “nobody can tell you what your self-care looks like — you get to define it for yourself,” Cornish said.
Impacts of isolation during coronavirus pandemic
Because of the danger coronavirus presents to elderly or sick people, Cornish said many of the caregivers she works with have reported feeling extremely isolated since the pandemic began.
Caregivers usually have some support throughout the day during normal times. Maybe their loved one is in an adult day care program, or they get a break from caregiving when they head off to work for the day.
Many of those breaks have stopped during the pandemic. Some caregivers are even avoiding trips to the grocery store out of fear they could bring the virus home and put their loved one at risk.
“There’s a heightened sense of protection and a need to isolate more than everyone else,” Cornish said.
And for those caregivers who don’t live with the loved one they are responsible for, not being able to check in on them at the long term care facility or senior care housing where they live can be extremely isolating for both caregiver and patient, said
Jim Herlihy, senior director of marketing and communications for the Colorado Alzheimer’s Association.
“It can be very disconcerting for the person living with disease — they don’t understand what it all means and wonder if they’ve been abandoned,” he said. “We’ve heard from some caregivers who are saying the disease seems to be advancing (during this period of isolation).”
Focusing on the positive
From structuring your caregiving environment to using technology to connect the person being cared for with other loved ones, it’s possible to find peace and even joy during the caregiving journey (see factbox).
Schafer said education about the person’s disease or illness is important, as well as connecting with other caregivers who share similar experiences or circumstances.
“There’s power in people not feeling like they’re the only ones going through this,” Schafer said. “It might not change your circumstances, but it helps change your mindset.”
Cornish said there’s joy in the caregiving journey, you just have to know where to look for it.
“Caregiving allows us to stop and shift and really make caring for a loved one a priority,” she said. “I think our ultimate purpose on earth is to care for each other.”