Whether meeting the around-the-clock needs of an elderly spouse with dementia or those of a child with cerebral palsy, constant caregivers of the young and old share one thing in common: physical and emotional exhaustion.
“What happens a lot is that, with someone else becoming the focal point of their lives, caregivers don’t take care of themselves,” said Josephine Cirrinone, senior care coordinator of the Bangor-based Eastern Area Agency on Aging. “Their whole life is focused on that person they are caring for, and they don’t see their own primary care physician or address their own ailments or make time to pursue the things they enjoy. The result is stress and exhaustion, and people get very ill and depressed. It’s been shown that most people caring for an elderly spouse die before the person they are caring for.”
Caregiver burnout affects not only those caring for adults debilitated by the physical and mental ravages of aging, but also those caring for children with chronic physical disabilities and mental health and developmental issues. Some researchers who study caregiver burnout liken it to Post Traumatic Stress Disorder. Like PTSD, symptoms may surface over time and can include depression, constant fatigue, isolation from friends, loss of interest in once-favorite activities, substance abuse and changes in eating patterns.
“Sometimes people find themselves thrust into the role of caregiver after a critical situation or a precipitating event, like a spouse or a parent breaking a hip, which involves hospital stays, nursing home placement and rehabilitation,” Cirrinone said. “It can happen so suddenly that people providing care don’t realize that they are not taking care of themselves. Caregivers have to restore their lives and think in terms of ‘What have I done for myself today?’ It’s as important as eating and sleeping.”
One common approach to warding off caregiver burnout is respite care, which involves strategies that provide caregivers a break from their duties. It can be as simple as recruiting family and friends to help out or hiring in-home personal care assistants, who bill their services at rates ranging from $15-$40 an hour for intermittent care and $120-$200 a day for live-in care, depending on the level of care required. Adult day care services and short-term relocation of those requiring care to nursing homes or assisted living centers — for a few hours, for the day, or overnight — also can offer “time away” from the stresses of constant caregiving.
Cape Memory Care in Cape Elizabeth, which caters to residents with Alzheimer’s and other memory issues, recently added a day program that operates seven days a week.
“Our day program offers a safe environment with a variety of activities created specifically to engage persons with memory loss and a staff that is specially trained in working with people with memory impairments,” said Matthew Walters, chief operating officer of Woodlands Senior Living, which owns and operates Cape Memory Care.
Cirrinone points out that caregivers don’t even have to leave home to recharge their batteries.
“If you like music, listen to it,” she tells caregivers. “If you have a favorite show on television, watch it. Do yoga or meditation. Take a walk or take a friend out to lunch.”
Through its Children’s Behavioral Health Services agency, Maine is in the process of ramping up its ability to provide respite care at no cost to parents of children from birth to age 17 who have special physical, mental or behavioral needs. Since July 1, those services have been administered under a contract with the National Association of Mental Illness/Maine.
That Augusta-based organization is obligated to provide 189,625 hours of free respite care statewide each year, including 71,271 hours in Aroostook, Hancock, Penobscot, Piscataquis and Washington counties. The agency is now recruiting both respite care providers and professionals to staff a 20-hour-a-week regional office in Bangor.
“The average parent-caregiver who is in the business of caring for children with special needs finds it’s a 24/7 job,” said Peter Phair, NAMI/Maine’s director of respite services. “They also find it difficult to take a break, both physically and emotionally. For parents of kids with a high degree of need, the process of getting even a two-hour break to go to a movie or to a restaurant can be a long and elaborate process, as it has to be a planned event.”
Belinda “Robin” McComb of Lincoln is the mother of two special needs children, one 13, the other almost 11. Her family recently qualified for 16 hours a month of respite care, the maximum hours per year that can be allocated to each family. With the help of a respite provider who was recently trained and certified through the new NAMI/Maine program, McComb was able to get away on a recent Saturday night, her first break since June.
“It’s fantastic, like money in the bank,” she says of the program. “You can look at a calendar and actually make plans. … My husband and I were able to go to Lee to see a ‘Home on the Grange’ show that included Mark Miller, who is a fantastic musician who I hadn’t see play in 30 years. We were gone seven hours and had a fantastic night out. When he got home, the woman doing respite care said she had never seen my husband smile before. It gives you a whole new outlook.”
Tammy Bridges of Prospect has been providing respite care to families for more than 25 years and was recently certified by NAMI/Maine to meet the needs of their clients 12 hours a month. On weekends she travels to Plymouth to help a family that includes a child with severe autism.
“My coming in lets them get away with the other kids and do things with them they otherwise couldn’t,” Bridges said. “They usually go to a movie and to a restaurant. It gives them a little leeway.”
For information about the program, visit www.nami/maine.org or call 622-5767.