In order for caregivers to care for others, they must first take care of themselves. Respite care, or breaks from caregiving, helps many caregivers regain space, perspective and energy. The fifth of a five part series on living with Alzheimer’s in North Carolina.
By Michelle Cerulli
After Chuck Barbour’s diagnosis, his wife, Jeannette, faced many changes.
There were the obvious and painful changes to Chuck that Alzheimer’s caused. There were also the decisions about Chuck’s care she had to make.
Jeannette went from managing one checking account to handling all of her and Chuck’s finances and filing their taxes, things she had never done before.
Jeannette also learned how to comfort Chuck through his disease. As Alzheimer’s patients often do, Chuck sometimes asked for his parents, who died years ago.
“At first, if he would ask me, ‘Do you know where my mama is?’ I’d say, you know, honey, she’s in the same cemetery as my mama is,” Jeannette said. “But when I would tell him that, it got so like I was telling him his mama died for the first time. And he would cry sometimes and ask if I was telling him the truth.”
So later, when Chuck asked, Jeannette began telling her husband that his mother was visiting family out-of-state, or running errands.
“It comforts them,” she said. “You tell big fat lies about this and that. When you tell them the truth, they’re just so upset about it.”
Jeannette also learned how to deal with anger, especially her own, which was not easy. She realized that when she got frustrated, the best thing she could do was walk away for a little while.
“I have to remind myself what it would be like to have a brain that’s not able to figure out anything that’s going on,” she said. “You have to deal with it in a calm manner rather than fussing or being bossy.”
Jeannette’s twin sister died of Alzheimer’s years ago. Jeannette suspects that her mother, who died at age 95 and had many of the symptoms she now sees in Chuck, also had Alzheimer’s or another form of dementia.
When Jeannette loses her train of thought or can’t find the word she’s looking for, she laughs and calls it “a senior moment.” But it’s more than that. It’s also a nagging worry about her own future.
A number of factors, the greatest of which is age, contribute to a person’s likelihood of getting Alzheimer’s. Jeannette knows that family history is also a factor.
March 2011, Chuck Barbour’s assisted living facility, Durham.
Jeannette followed closely behind as an aide helped Chuck down the hall to his bedroom. Chuck walked slowly, his knees bending out to the sides with each step.
“Your pants are looking a little short, honey,” Jeannette said, a few steps behind. “Guess that’s because we’ve been washing them so much.”
When Jeannette arrived earlier, Chuck was napping in a chair in the living room. Other residents were scattered about the room as well. The TV in the corner was set to an oldies music channel.
The aide guided Chuck into his room once they reached it and helped Chuck find his way into one of two chairs. Both were positioned under several signed photos and service medals hanging on the wall. At the center was a giant framed collage of family photos positioned around a timeline of nearly 50 important family dates and descriptions, including the birth of grandchildren and wedding anniversaries.
The wall was a tribute to a full life.
Chuck settled into his chair. Jeannette sat by his side. He appeared small and wore a steady smile. His clothes were neat and clean. He babbled, and Jeannette could make out a few words. She repeated the words he said and added phrases like, “I suppose so,” or “Is that right?”
A former journalist, lobbyist and PR man, Chuck loved to talk to people, to be at the center of things. But Alzheimer’s meant that Jeannette could no longer make out most of what Chuck said. He drifted between sleep and consciousness. He scratched his arm, uttered strings of words that didn’t make sense. He reached out for his wife.
Jeannette’s visit was earlier than usual, which was likely why Chuck was dozing. It was his usual naptime, she said.
Chuck mumbled something and woke himself up. He looked over to Jeannette and tried to talk to her. He seemed to find comfort in her being there, in being able to reach out and hold her hand.
Jeannette visits Chuck as often as she can. She usually goes in the late afternoon and stays through dinnertime. After dinner, she helps Chuck to bed and says goodnight before leaving. Sometimes she shuts off the lights and turns on music he likes and sits by him until he drifts asleep.
She is sometimes frustrated with the care provided at Chuck’s assisted living facility, which costs about $7,000 per month. It’s not an easy job, and staff turnover is high. Only two or three staffers are consistently available to look after the 20 or so residents in the Alzheimer’s unit.
A 2006 study by the MetLife Mature Market Institute — the life insurance company’s policy resource center on aging, retirement and long-term care — LifePlans, Inc., a risk management and consulting firm, estimated that the annual cost of caring for a person with Alzheimer’s is $43,000.
According to The Shriver Report: A Woman’s Nation Takes on Alzheimer’s, a 2010 joint effort between Maria Shriver, whose father suffered from Alzheimer’s before his death, and the Alzheimer’s Association, the average cost of caring for an Alzheimer’s patient is $56,800 per year, with roughly $34,500 per year being covered by caregivers and their families.
In 2010, the American Association of Retired Persons (AARP) reported that the majority of this $34,500 figure is the value of “uncompensated care,” or unpaid bathing, feeding, cleaning, toileting and assistance with other activities of daily living done by caregivers. But there are also out-of-pocket expenses that come to an average of $7,259 per year, according to the AARP.
Jeannette’s paid caregiver, who has been helping her with Chuck for years, takes Chuck’s dirty clothes and bed linens home to wash and dry. The facility staff wasn’t keeping up with the task, and it became too much for Jeannette to do herself.
Jeannette cries when she’s upset. Sometimes she raises her voice. She spends time with her daughters to ease her mind when the frustrations become overwhelming.
Unsurprisingly, a caregiver’s need for support typically increases throughout a patient’s disease progression. it’s not always the case, but many Alzheimer’s patients eventually lose the ability to recognize caregivers and other family members and friends.
“One of the issues for caregivers is the sense of losing the person and the relationship bit by bit,” said Dr. Laura Clark, chief psychologist of the geriatric unit at Central Regional Hospital. “The person is still there. They still need love and attention, but they’re not who they were before. There can be a lot of anticipatory grieving of little losses adding up slowly.”
Roughly half of all women caregivers, who make up about 60 percent of total Alzheimer’s caregivers worldwide, described having high physical and emotional stress, according to The Shriver Report. Thus, it’s no surprise that many social workers and caregivers emphasize the importance of respite care, or breaks from caregiving.
Staff at the Orange County Department on Aging as well as North Carolina’s Division of Aging and Adult Services can help caregivers find local services and pay for some caregiver respite options. The Department on Aging maintains a telephone help line weekdays from 9 a.m. to 4 p.m., staffed by social workers knowledgeable about Alzheimer’s support services and available resources. In addition, the Department has established a Caregiver Respite Program through funding from the National Family Caregiver Support Program. Depending upon available funds and family priority of need, the respite program can support caregivers by helping to pay for in-home aide services or a patient’s attendance at a local adult day care program.
Medicare doesn’t cover the long-term care most needed by Alzheimer’s patients, such as support with eating, bathing, walking and toileting. So programs that provide financial support for these activities of daily living can be a huge help to caregivers.
For example, Project C.A.R.E. (Caregiver Alternatives to Running on Empty), an N.C. Division of Aging and Adult Services program, relies on family consultants to “increase quality, access, choice and use of respite and support services for low-income rural and minority families caring for a person with dementia at home,” wrote state Project C.A.R.E. Director Mark Hensley in an e-mail. Family consultants visit the homes of “caregivers in crises and offer timely, individualized assessment, guidance, counseling, support and education,” with the hope of matching families with the most appropriate and personalized support.
The project provides caregivers with up to $1,800 per year to use toward respite care, including adult day services and group respite care.
But Project C.A.R.E. recently lost some state funding. Its federal funding, provided through three-year grants from the Administration on Aging (AOA), is also expiring soon.
“We have, however, created a strong collaboration with the Family Caregiver Support Program, which
provides services to caregivers in all 100 counties of North Carolina,” wrote Hensley. He and his colleagues also hope to find out about the project’s eligibility for new funding for dementia care becoming available for 2013.
So, they wait.
And so do Alzheimer’s caregivers. They wait for assistance, for signs of hope, for a cure. In the meantime, they live from day to day, kept afloat by all that is not yet lost.
Michelle Cerulli prepared this series as her master’s thesis for the School of Journalism and Mass Communication at UNC Chapel Hill. You can follow her on twitter @michellecerulli.