Karen Benedict remembers when she first realized that her mother, Pamela Stewart, had changed.
“She used to be a fabulous cook,” the 58-year-old says. “And it was taking her literally hours to put on a simple supper.”
Doctors discovered Stewart had a form of frontotemporal dementia, or FTD, a group of rare disorders that are caused by the progressive loss of nerve cells in specific parts of the brain. In essence, her brain is shrinking.
Those suffering from FTD might show a lack of judgment, problems with balance and movement and a number of other symptoms. Benedict has watched some of them surface.
“She has tremendous memory gaps.” Benedict says. “She can’t make a decision.”
For about the last three years, Stewart has stayed with Benedict and her husband, Douglas, at their Brockport home while her condition has deteriorated. Though he helps care for his mother-in-law, most of the responsibility falls on his wife.
“Every detail of your life revolves around that person,” she says.
Many Americans undergo the stress of caring for another. According to a 2015 AARP/National Alliance for Caregiving study, an estimated 43.5 million U.S. adults provided unpaid care for an adult or child during the prior 12 months. Though appreciable numbers of men are caregivers, they are in the minority.
“National averages tell us 60 percent of caregivers are female,” says Mary Rose McBride, vice president of marketing and communications for Lifespan of Greater Rochester Inc. The nonprofit provides information, guidance and direct services for older adults and their caregivers.
The average female caregiver is middle-aged, according to the AARP/National Alliance study, though nearly one of every 10 adults who assume that role is 75 or older. Eighty-five percent of those they assist are relatives. Many who receive that care, particularly if they are older, try to remain in their own homes. All may suffer from a range of maladies and other difficulties.
“You have caregivers of children with autism or developmental disabilities; you have caregivers of people who have a cancer diagnosis; you have caregivers who are thrust into caregiving through acts of violence,” says Doris Green, director of the New York State Caregiving and Respite Coalition, or NYSCRC, one of Lifespan’s programs. “You name a severe, chronic condition, and there’s a caregiver.”
The roles caregivers take on can encompass a number of tasks, from preparing meals to helping another use the toilet. Some loved ones might also have difficulty maintaining their living situations.
“Maybe they need housing or food or clothing, or other components that would help optimize their general health,” says Deborah Peartree, director of the nonprofit Greater Rochester Health Home Network, or GRHHN. “Others need help obtaining medication or taking medication routinely, or transportation to or from medical appointments.”
More specialized, material assistance might also be of benefit. Someone who is suffering from multiple sclerosis could have trouble getting around his or her home.
“You may need some adaptive devices to help you ambulate,” Peartree explains.
Benedict and her husband changed their living arrangements in order to meet her mother’s needs. Now, Stewart lives on one floor of their home.
“Our bedroom is in the basement,” Benedict says.
Green began living with her late mother, Joan Vawter, after the senior was diagnosed with dementia, arthritis and other ailments. Dementia is a general decline of memory or thinking skills that is severe enough to reduce a person’s ability to function normally.
After a time, Green found herself taking care of everything for her mother while working full time and raising two children. Even with the assistance of home health aides, it was quite a job.
“Just the medical appointments alone are absolutely overwhelming to try and manage while you’re working,” Green says. “That’s not something anybody’s going to do but you.”
That kind of stress takes its toll upon many caregivers, who might skip their own medical appointments, eat or sleep poorly and in other ways neglect themselves. The isolation and stress they feel, born of the need to care for someone else day after day, can be particularly trying.
“I used to live for Sunday mornings, so I could just go to the grocery store,” Green says. “If I had extra help on a Sunday morning, that’s what I did—I spent it at Wegmans.”
Several Rochester-area programs are ready to help caregivers with their tasks, either directly or indirectly. NYSCRC is a partnership of agencies and individuals who seek to increase knowledge of caregiving. In addition, the nonprofit offers mini-grants for the development of caregiver respite programs.
“When I talk about respite, I’m really talking about time—time that a caregiver has to spend on self-care and on other parts of their lives,” Green says.
GRHHN contracts with agencies that help Medicaid recipients obtain the services they need.
“The goal of the Home Health program is to help the client be as healthy as possible, to remove any barriers that might get in their way,” Peartree says.
Case managers at those agencies assess their clients’ needs and then hook them up with appropriate programs. If clients permit, their caregivers can be involved in the process.
“(Caregivers) have the help and support of somebody who would be advocating for their loved one, and identifying and reducing barriers that the loved one might not even be aware of,” Peartree says.
Lifespan, one of the programs with which GRHHN has contracted, offers a great deal of assistance to its clients—who are generally 60 and older—and the caregivers who assist them.
“We provide information, guidance and many direct services,” McBride says.
The nonprofit’s services, which are geared toward those living in the community, can meet many needs. Eldercare specialists are ready to answer calls from older adults, caregivers and the professionals who are involved with them. The agency’s nurses will accompany clients to medical appointments, assist them with medication issues and help them attend to their health care in other ways. Lifespan also offers a six-week course geared to the needs of caregivers and plans to expand its respite services.
“We are recruiting and training volunteers to increase respite options so caregivers of people with mild dementia can take a break a few hours a week,” McBride says.
Rochester Regional Health’s ElderONE program assists those who are 55 and older, have medical or physical conditions that make them eligible for placement in nursing homes but prefer to stay in the community. The program is based on the PACE (Program of All-Inclusive Care for the Elderly) model of care.
“We’re able to help that person stay in the community by … knitting together a comprehensive set of services that allows that person to stay at home,” says Kathy McGuire, senior vice president of Rochester Regional Health.
Dedicated care teams of primary care physicians, nurses, social workers, recreational therapists and other professionals work together to bring about those ends.
“It’s the interdisciplinary team that’s really the heart of PACE,” McGuire says. “It really pulls together the comprehensive services.”
Clients can obtain the care they need at one of ElderONE’s day centers in the Rochester area and, in many cases, at home. A senior could see a physician, talk to a social worker about a financial issue and attend a day program all at the same center. The arrangement can be of great help to caregivers.
“The nature of the program is to put together the right package of services so that caregiver feels relieved,” McGuire says.
Useful though such programs can be for their clients and the caregivers who help them, they don’t always work as desired. Benedict was able to sign her mother up for a long-term care plan that should cover at least some of her—and the Benedicts’—needs.
“They were supposed to supply 18 hours of in-home assistance—somebody to come in for two or three hours in the day to give her some lunch, make sure everything’s OK,” Benedict says.
Unfortunately, the promised benefits have not yet come through. While the Benedicts were working—both are full-time teachers—they had to hire someone out of their own pockets to care for Stewart. They are home now that school has let out, but Benedict worries about how she will care for her 76-year-old mother after classes begin.
“My hope and prayer is that we can have something in place by September,” she says.
Green went through such difficulties during the years she cared for her mother, who died a little over two years ago at the age of 82. Asked what might benefit local programs for caregivers, she has a fairly simple answer.
“Like any social program, we need more money.”
Mike Costanza is a Rochester-area freelance writer.
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