When a major illness or injury leaves someone in need of long-term, nearly round-the-clock care, it’s often up to a family member to step in and provide it.
However, research shows that the role of caregiving can lead to its own health issues, creating a significant amount of holiday stress and strain for the caregiver.
“That stress can come in many forms,” says Marylee MacDonald, caregiver advocate and author of “Montpelier Tomorrow,” which focuses on a family caring for a loved one with ALS, also known as Lou Gehrig’s disease.
“There is emotional stress, physical stress and even financial stress. Sometimes there’s also additional stress from the guilt that caregivers feel when they find themselves resenting the people they are caring for.”
MacDonald says caregivers overwhelmed by the stress must make a concerted effort to find things that will bring happiness into their lives. That may be even more important during the holidays when the season calls for merriment, but each day still brings its share of difficulties.
“Finding your bliss ranks high on the to-do list,” she says. “It’s not easy, but you always should be on the lookout for things that surprise you and bring you joy.”
A recent study by the AARP Public Policy Institute and the National Alliance for Caregiving revealed that 22 percent of caregivers felt their health had gotten worse because of caregiving.
“I don’t think that’s all that surprising,” MacDonald says. “If anything, it’s a wonder that the percentage isn’t higher.”
The study also found that nearly one in five caregivers (19 percent) reported a high level of physical strain resulting from caregiving, while 38 percent considered their caregiving situation to be emotionally stressful. Those percentages go up significantly for caregivers who provide 21 or more hours of care each week.
When people feel that had no choice in taking on their caregiving role, the stress becomes even greater. More than half — 53 percent — report high levels of emotional stress.
Caring for a close relative causes more emotional stress than caring for another relative or a non-relative, with 45 percent of those caring for a spouse and 44 percent of those caring for a parent reporting emotional stress. That compares to 35 percent of those caring for another relative and 18 percent of those caring for a non-relative.
Finances sometimes take a hit, with 18 percent of caregivers saying they experienced financial strain. Financial strain was more commonly reported by higher-hour caregivers.
“What often happens these days is that most of the burden falls to one person, with maybe other family members stepping in occasionally to provide respite care,” MacDonald says. “Some of that is because of the way society is today. We don’t have three generations living within a few blocks of each other any more.”
MacDonald’s involvement in caregiving began when her son-in-law became afflicted with ALS and she put some of her own goals on hold to help her daughter.
“My son-in-law’s illness threatened my daughter’s happiness, and I wanted to protect her,” MacDonald says. “I think that’s only natural. But it also made me aware of the strains that caregivers are under and that in many cases, there aren’t always good long-term institutional care options available. That puts the onus on family members.”
Depending on the situation, caregivers become responsible for any number of duties. They help the care recipient get in and out of bed and chairs. They deal with incontinence or diapers, help the recipient to and from the toilet, and assist with bathing or showering.
They also provide transportation, take care of shopping, and do housework.
“People have their own lives to live, and not everyone wants to work without pay 24/7, for months or years on end,” MacDonald says. “That’s another reason why one person often has to take on the bulk of the responsibility alone.”
Marylee MacDonald is a caregiver advocate and a writer whose debut novel, “Montpelier Tomorrow,” focuses on a family caring for a loved one with ALS. The novel recently won Gold Medal for Drama from Readers’ Favorites. MacDonald’s fiction has won the Barry Hannah Prize, the ALR Fiction Award, the Ron Rash Award, the Matt Clark Prize and two Illinois Arts Council Fellowships. Her works have appeared in the American Literary Review, Blue Moon Literary & Art Review, Briar Cliff Review, Broad River Review and others. She lives in Tempe, Ariz.
