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Caregiving during COVID-19: How to plan for what’s next

Every stage of the COVID-19 pandemic brings new challenges and a learning curve – especially for those caring for a loved one facing serious illness.

While many caregivers are still working remotely from home with no change in sight, others are facing a return to the office and the anxiety of not being near their loved one 24/7.

No matter the situation, our “new normal” can be especially stressful. That’s why is important to explore caregiving resources, solutions and strategies that may be available to you.


Seek outside help to avoid burnout

Every day, JourneyCare Social Worker Joshua Kaplan-Lyman gets an up-close look at the heightened obstacles caregivers face during the COVID-19 pandemic.

“When this first started and people were working from home, many families considered bringing loved ones with serious illness home from the nursing home, especially since those facilities were prohibiting visitors,” he said. “But now there is uncertainty of when they might go back to work in person – or even people from the sandwich generation juggling caregiving, work and e-learning for young children – and how that might affect their situation in the coming months.”

For those whose loved ones are not eligible for hospice – or who are already in hospice care and need extra suppport – Kaplan-Lyman recommends hiring a home care agency for additional assistance. JourneyCare offers a list of trusted agencies that families can explore by location at journeycare.org.

But because this option can be costly, Kaplan-Lyman also recommends collaborating with your social network – family, friends, neighbors and others you trust to help during the pandemic – to delegate caregiving needs.

“Gather with what support network you have and figure out how to piecemeal duties so no one person gets burnt out,” he says. “It’s important to figure out how to provide both practical and emotional support to the main caregiver and create a necessary respite.”

Choose hospice sooner for more support

For many families caring for a loved one with serious illness like cancer, COPD (chronic obstructive pulmonary disease) or CHF (chronic heart failure), they may not realize that both they and their loved one can gain clinical and emotional benefits from hospice in their own home.

Patients are eligible for hospice if they are on Medicare Part A and are certified by a physician as having a life expectancy of six months or less if the illness runs its normal course. Too often, caregivers and families wait too long before seeking the interdisciplinary, in-home support of hospice care. (In 2017 over half of U.S. patients were enrolled in hospice for 30 days or fewer, with nearly 28 percent of those dying in a week or less, according to the National Hospice and Palliative Care Organization).

Kaplan-Lyman adds that hospice offers support like nurse visits and pain management that many caregivers expect and understand, as well as additional benefits families might not have considered.

“With hospice, families don’t have to worry about going to the hospital to see doctors,” he says. “Hospice takes away that transportation burden and offers coordination of services. There are also services that remove day-to-day caregiving stressors, such as visits from certified nursing assistants to provide the patient with personal care like bathing, or medical equipment that is not easily available to the average person.”

Caregivers and patients also have the support of social workers and chaplains, to ensure care for the mind and spirit, too.

Families should also understand that patients who live longer than six months can remain eligible for hospice. After the initial certification period, each beneficiary receives an unlimited number of additional 60-day periods if approved by their physician. To learn if your loved one is eligible, visit journeycare.org or call 1-844-6-JOURNEY to speak with a specially trained nurse.

“It’s so reassuring for caregivers to know that you have a team at your back to support you through this process, especially during this pandemic when everything is different,” Lyman-Kaplan says.

Consider respite care or family leave

JourneyCare Social Worker Jennifer Green says she has seen a recent uptick in caregivers seeking leave through FMLA (the Family Medical Leave Act) so they can juggle all of their responsibilities.

“At the beginning of the COVID-19 crisis, many caregivers didn’t need time away from work because they were in their homes and able to handle everything,” she says. “Now people are worried about being expected to go back to work, so they are seeking intermittent FMLA.”

Many, Green says, are requesting a week or two of family leave rather than the full 12 weeks available, since it allows them to prioritize caregiving while also staying tuned into their jobs.

Others, however, are taking a different approach. Those caring for a hospice patient at home can take advantage of respite care, which provides temporary, short-term care in a skilled nursing facility for patients to relieve their family member who is the primary caregiver.

“COVID-19 presents new scenarios and challenges each day, especially for patients with serious illness and their families, and we never know what is ahead,” Green says. “Families should take advantage of caregiving options and support that is right for them, so they can make the most of their time together.”