For the past several years, Santo D. Marabella, a 58-year old college professor living in Fleetwood, Pa,. has spent the majority of his free time taking care of his parents.
Marabella’s father, age 93, has Parkinson’s and has broken numerous bones; his mother, 88, has end stage kidney failure and is in dialysis three times a week.
An only child, Marabella is at his parents’ house three to five hours daily, assisting a paid caregiver and handling tasks like bill paying and shuttling them to doctor’s appointments.
Between work and caregiving, there’s not much time for anything else. Until recently, says Marabella, he hadn’t been to the gym in two-and-a-half years. He rarely goes out with friends. In the event he does make it to a social event, he keeps his phone nearby and an ear alert for his parents’ familiar ring.
Still, Marabella is reluctant to complain. “The caregiving job is draining,” he allows. “You really have to take care of yourself and I don’t do that well.”
The stress of full-time care
Most family caregivers are in a similar situation to Marabella. A 2018 study by Genworth indicated that 43% of caregivers experienced negative effects on health and well-being, while 53% experienced high levels of stress.
Despite this, however, many are unable or unwilling to take a break—because it’s costly, or because they feel guilty or anxious about leaving a loved one with someone they fear may not be well trained. “Respite seems like a luxury that falls away,” says Jill Kagan, director of the ARCH National Respite Network and Resource Center in Annandale, Va.
A study by the Alliance and AARP found that 85% of caregivers don’t allow themselves respite services, which can range from an adult daycare program to a direct care worker coming into the home to relieve the caregiver, or having the care recipient receiving care in a facility.
But taking some time away isn’t just a smart idea for you: It’s important for your loved one, too, so you can continue to provide top-notch care.
“Respite is one way of being able to disconnect, clear your mind and give your body a break and then you can renew yourself to get back at it,” says Sherri Snelling, CEO of Caregiving Club, which helps family caregivers balance self-care while caregiving. The resources below can help.
See if Medicare can help
New guidelines issued by The U.S. Centers for Medicare & Medicaid Services allow insurance providers to cover certain non-skilled, in-home care support under the Medicare Advantage program beginning this year.
That doesn’t mean they all do, however. Humana, for example, is testing an expanded Personal Care Services benefit in two markets, Florida and Texas, which provides caregivers with temporary respite while the member continues to receive care at home. Anthem says some of its affiliated plans now offer up to 124 hours a year of an in-home health aide.
“It’s a very new thing and people are still figuring it out,” says Amy Goyer, AARP’s family and caregiving expert.
If your loved one has Medicare Advantage, check with your provider to better understand the extent of respite coverage in your area. It might make sense for them to switch plans during the next open enrollment season.
Contact assisted living facilities
Some assisted living facilities will offer “respitality stays,” if they aren’t full, allowing temporary stays ranging from a day to a couple of weeks. Call ahead of time to make sure the facility serves elders similar to your loved one (you can search for resources by zip code at the Elder Care Locator’s website).
Respitality care can be particularly helpful for vacations, which many caregivers forego because they don’t want to leave a loved one at home, says Snelling.
Try condition-specific resources
If your loved one is eligible for veteran’s health benefits, he may qualify for 30 days of respite care at no charge from the Veteran’s Administration. You can find other services for veterans at the Easter Seals website.
Additionally, if your parent suffers from Alzheimers, many local chapters of The Alzheimer’s Association offer respite grants that provide respite care for caregivers. You can find your local chapter here.
Allow yourself a small break
While getting away for only a few hours may not seem worth the trouble, studies have found that even a small dose of respite care can be effective in alleviating stress. A 2018 study by the Administration for Community Living found that four or more hours a week of respite was effective in reducing caregiver burden.
So even if you can only pay for a few hours, book the time. CareLinx, which uses technology to match caregivers with those requiring care, can provide a caregiver for as little as a one hour period at rates ranging from $15 to $25 an hour.
If even a few hours of paid help is out of the question, consider asking friends, neighbors, or fellow church members to sit with your loved ones so you can get a quick break, says Snelling. Use online platforms like Lotsa Helping Hands and Caring Bridge to create a calendar indicating when you need breaks and invite friends and family to provide care free of charge.
No matter how many respite hours you can take, make sure your time away is truly used for rejuvenation, not for caregiving duties. Says Marabella: “Do something that gives you that break. We definitely need a break.”