SCARBOROUGH — Maine is the oldest state in the country, an issue not only for the elderly, but for the people who now find themselves in new roles: caregivers to their elderly parents.
According to Ann O’Sullivan, family caregiver specialist for the Southern Maine Agency on Aging, many adult children are caring for their senior parents, but they do not think of themselves as caregivers.
“In their minds, they’re just doing a family duty,” O’Sullivan said recently. “They may not take the step of saying, ‘I wonder if there’s any help out there’ because they’re thinking ‘I am just doing what an adult child does or what a senior spouse does.’”
Kate Cole Fallon, counselor and caregiver advocate for the SMAA, said many adult children think the term “caregiver” means providing around-the-clock hands-on care.
But if you provide assistance to help a senior adult remain at home – grocery shopping, cooking and preparing meals, or just companionship – you are a caregiver.
“It can be as simple as driving mom to her doctor’s appointment to paying her bills,” Fallon said. “The term is used to describe unpaid family members that are helping senior adults.”
Higher standards of living, medical breakthroughs, and technological development have given healthy and sick people the chance to live longer than at any other time in history. But they need help.
Susan Wilder of Scarborough is SMAA’s foundation relations manager. She is also a family caregiver for her mother, Joyce DeWitt, who has Alzheimer’s. Her father, Jim DeWitt, was Joyce’s primary caregiver for many years before they moved to southern Maine from their home in New Hampshire.
“It was a difficult, emotional experience for them to leave their home and friends of 35 years,” Wilder said. “But family cannot rely on friends to care for family members. It has been great to have them close by.”
Through SMAA’s Family Caregiver Support Program, which is directed by O’Sullivan and Fallon, Wilder said, she has received more than 20 hours of training on Alzheimer’s. She has learned how to educate her family, and the program helped her grapple with emotional loss and anxiety.
“I’ve had a number of conversations with (O’Sullivan and Fallon,” Wilder said. “We considered assisted living, and they helped us realize that that was not the best option.”
Family caregivers often do and are asked to do more than they thought possible. But care does not tend to materialize overnight. It requires planning and communication between family members before a crisis hits, according to the experts. They need to consider what quandaries they may run into, and what’s out there to help them.
SMAA’s Family Caregiver Support Program focuses on support, problem-solving, and education. It helps people work through family communication issues, figure out ways to take a break, and offers one-on-one support by phone, e-mail and in-person appointments.
The program also conducts support groups and facilitates educational programs and classes to teach all caregivers easier ways to address and anticipate issues that may be down the road.
“People really need to weigh out how much of the care they want to manage,” O’Sullivan said. “Do you want to take out worker’s comp and Social Security? If I’m thinking ahead to whether I will need long-term care provided by the state, I can’t just be hiring a caregiver off to the side and handing them money. Down the road, that may look like I gave a gift if we haven’t set up a contract. It’s important to do your financial and legal homework, too.”
Medicare only pays for skilled medical care, like nursing or therapies. The state does have a program that pays non-spousal family members if a person is medically and financially eligible to receive help. However, the person has to become a state-licensed home care provider, which is a fairly complex process.
According to O’Sullivan, there are a lot of delays between people determining their needs and actually providing care, because there’s no freed up funding. There has been work at the legislative level to make this less cumbersome, but she said many family members still have to choose between going to work or providing care to a senior adult.
SMAA tries to help people see ways to have these kinds of family conversations. because if mom or dad can no longer live independently, the ideal caregiver may not always be the most obvious person.
“People think it’s mostly women doing the care-giving,” Wilder said. “But there are a lot of men out there care-giving for women, especially since more women have Alzheimer’s. My husband puts in a lot of hours, too.”
SMAA encourages families to have these conversations when it is a non-issue, so that they are prepared when it becomes a problem.
“It’s much easier to do it before the crisis hits,” Fallon said. “Unfortunately, too many times people don’t think about it until the crisis hits, so we’re trying to serve people at both ends of the spectrum.
When a family member is caring for a senior adult who is beset with a chronic or progressive condition like dementia, there is time to anticipate what’s coming down the road. However, if faced with a sudden illness or hip fracture, it’s like night and day for the senior adult; One day they’re fine and the next day they’re in the hospital for surgery and months of rehabilitation.
“Statistically, there will be more parents to care for than there are children,” Fallon said. “Coming up with alternatives to long-term care and extensive family care could solve some of these problems.”
Adult day centers provide one alternative.
For an inexpensive cost, these centers provide senior adults with opportunities to socialize, get a good meal, and take a safe shower. The centers are equipped to keep folks active and in their homes longer. They allow family caregivers to take a break or go to work guilt-free.
In her article, “Adult Daycare for Someone with Alzheimer’s,” Caring.com senior editor Paula Spencer Scott said “typical (adult day center) clients have lost a degree of independence due to normal aging, a medical crisis, or a chronic condition such as Alzheimer’s disease or other dementias, but they live alone or with a caregiver… (whereas) senior centers tend to cater to a healthier, more mobile, and more independent clientele.”
Wilder make use of the Truslow Adult Day Center in Saco, one of fewer than half a dozen such centers in Cumberland and York counties.
“For $14 an hour, my mom can get therapy-based care, and my dad and I can get a break,” she said. “Even if she can’t remember the people, she loves to reference what she did there.”
In the future, budgetary issues are going to affect care-giving in southern Maine. More options and alternatives will become necessary for people who do not have the financial resources to pay someone to provide home-based care.
According to O’Sullivan, employers are now realizing that it is becoming increasingly necessary to support employees who are family caregivers for their senior parents. Employers that decide to support such employees are finding that their turnover, absenteeism, and health insurance costs have decreased, she said, because family caregivers develop fewer stress-related health problems.
“Employers have also noticed less ‘presenteeism,’ which is ‘I’m at my desk but I’m not really here’,” O’Sullivan said. “It’s similar to how employers 20 years ago suddenly thought, ‘We’ve got all these parents who have to leave work early because they have a sick child or don’t have day care, (so) we need to put some supports in for child care.’ Elder care is now at that point.”