Ups and downs of caregiving
It has been a long and increasingly difficult 20-year journey, but Patty Kelly knows she is coming to the end of her caregiving responsibilities for her elderly mother.
The 56-year-old Westminster resident has been providing an evolving array of caregiving functions since her mother was first diagnosed with Alzheimer’s disease in 1994. Now 90 and in a residential facility in Virginia, Kelly’s mother is no longer able to speak or interact with her daughter.
But Kelly continues to make the 200-mile roundtrip every week to sit with her mother while she eats lunch. Kelly reads to her from the Bible, even clips her fingernails.
“It’s both a blessing and a curse,” said Kelly. “It breaks my heart to see her like this, but I’m glad that I have the time and a supportive husband and sister, so that I am able to do what I can.”
Through the years, Kelly’s responsibilities have grown from mowing the lawn when her mother lived independently, to managing her medical care, to taking over her finances and selling her house (in three days!) when it became clear her mother could no longer live independently.
“With every little step down the road, you grieve a little bit more,” Kelly said. “Your parent moves a little farther away from you, and on top of being sad, you’re angry that they’re no longer there for you.”
Finding support
Kelly has found much information and support through the Alzheimer’s Association. The association’s website offers
a large section for caregivers at http://www.alz.org/care/overview.asp, including a message board, links to support groups, and health, legal and financial resources.
Check the association’s Maryland site, http://www.alz.org/maryland, for support groups and events. The association offers more than 20 support groups in Baltimore City and County.
Kelly herself attends a monthly support group, something that is strongly encouraged by professional caregivers such as Michelle Mills, LCSW, Director of Adult Day Services at Levindale Hebrew Geriatric Center and Hospital.
Caregiver support groups are offered at such locations as Jewish Community Services, St. Joseph Medical Center, Kernan Hospital and Northwest Hospital Center; there are also numerous disease-specific caregiver support groups as well.
You can find more information at www.baltimorecountymd.gov/Agencies/aging/caregivers/supportgroups.html. The Baltimore County Dept. of Aging also publishes a quarterly newsletter called “Caregiver Connection,” available in print or online at https://www.baltimorecountymd.gov/departments/aging/caregivers/caregiver-connection.
“Providing care for an elderly or ill loved one is very stressful,” said Mills. “We suggest that caregivers find a support group whether in person or online. You have to commit to taking care of yourself.”
Millions of caregivers
According to the Alzheimer’s Association, 43.5 million adult family caregivers care for someone 50+ years of age, and 14.9 million care for someone who has Alzheimer’s disease or other dementia. Family caregivers are said to provide a value of $450 billion a year in unpaid care.
Another sobering fact, according to AARP: As baby boomer caregivers age themselves, there will be fewer caregivers available for them when they need care. In 2010, the ratio of caregivers to patients over the age of 80 was 7 to 1; by 2030, the estimated ratio will be 4 to 1; and in 2050, 3 to 1, making for an ever increasing burden on fewer family caregivers.
Some of the challenges caregivers face, Mills said, are understanding the disease process and how to manage it; financial considerations; juggling work, family and caregiving responsibilities; and, as Kelly observed, grieving the loss of the person you know, even if he or she is still living.
In addition to support groups, caregivers need to ask for help, whether from other family members, friends or professionals. For caregivers with jobs, a trustworthy place to leave loved ones during the work day can be especially important.
“Adult day care centers, such as the ones run by Levindale, not only provide a safe environment for elders during the day, but allow the caregiver to have some time for him or herself, whether it’s to run some errands, meet a friend, or take a nap,” said Mills. “If you burn yourself out, you won’t do anyone any good,” she added.
Caring for the caregiver
Amy Goyer agrees. “It’s important to keep your own tank full,” said Goyer. The 53-year-old is not only AARP’s Family and Caregiving Expert, but is the primary caregiver for her 90-year-old father, who has Alzheimer’s disease. She performed the same role for her mother, who died nine months ago.
To be more fully involved in her parents’ care, Goyer moved to Phoenix, and now commutes to Washington, D.C., when needed.
“Caregivers tend to ignore their own physical and emotional health,” said Goyer, author of Juggling Work and Caregiving, an e-book available for free at the www.AARP.org bookstore.
“Caregiving can be very isolating,” Goyer continued. “It can take a lot of time, and interfere with your own social interaction.”
Goyer herself finds a lot of support on Facebook. Because she doesn’t have time to attend a support group in person, Goyer relies on her community of Facebook friends, many of whom are also caregivers, to share her experiences and get their feedback and encouragement.
And while asking for help for your elderly relative is encouraged, so is asking — or arranging — for help for yourself. Ask a friend or neighbor to help with your own chores, such as mowing the lawn, running errands, etc.
Or hire someone to do those chores for you. Goyer uses a concierge service that takes on some of her personal responsibilities. “That has been a huge help for me, so I can be more present for my dad,” she said.
Support is also available from government and community agencies and organizations. Resources can be found through such sources as www.eldercare.gov, your local department of aging, www.aarp.org/takingcare, and — here in Maryland — through Maryland Access Point (MAP), www.marylandaccesspoint.info.
MAP is a statewide resource for information and assistance about long-term services and supports to allow individuals to remain at home and plan for future needs. Tools on the site help individuals assess services, understand care options and search for services. State partners on the site include the Maryland Departments of Aging, Disabilities, and Health and Mental Hygiene, as well as the regional Centers for Independent Living.
Another challenge that caregivers face is the disruption that can result within the family. Kathy McCarty lives in Baltimore and visits her elderly mother in Providence, R.I., as often as possible. She works with her brother and sister to coordinate care for their mother. The strain has taken its toll on their relationship, however.
“I heard a gerontologist speak who said that caring for elders can create permanent anger and resentment in families because one person tends to be saddled with the lion’s share of work,” said McCarty. That task fell mainly to her sister, and now, McCarty says wistfully, “We were close…before these years of caregiving.”
Benefits as well as stress
The subject of caregiver stress has been a focus of research for almost three decades, said Leslie Morgan, PhD, co-director of doctoral programs and professor of sociology at UMBC. But only recently have gerontology specialists turned their attention to the benefits caregiving can bring to caregivers.
“This is a time when you and your loved one can be together and get closer,” said Morgan, “when, hopefully, you’ll have the time to say things you might not otherwise have said, and to show your affection for each other.”
That’s how Baltimore City resident Donna Allnutt, 70, who has been a caregiver for numerous people, feels about it.
“As things come up, I just take care of them,” said Allnutt, who lived with her mother the last 10 months of her life, took night shifts for three months when her cousin’s brother was dying in the hospital, has cared for a niece with cerebral palsy, and is currently offering her home to a friend receiving cancer treatment.
“I just believe in helping others,” said Allnutt. As the mother of six, the personal chores, such as changing diapers, don’t bother her at all. “It comes naturally to me,” she said.
In her new book, The Caregivers: A Support Group’s Stories of Slow Loss, Courage and Love, author Nell Lake talks about the suicide of her grandmother, who took her own life seemingly in anticipation of a possible diagnosis of cancer.
“It’s clear to me that, by committing suicide, my grandmother wanted to avoid being an invalid, dependent,” Lake writes in her prologue. “It also seems clear that she didn’t want to be cared for….I’ve realized not only the ambiguities of my grandmother’s last act, but what she subsequently missed what I missed: the intimacy that may come with tending and being tended to. The opportunity to love, to move toward even what frightens us. Perhaps she ducked out to evade the inevitable closeness, the letting go, the being known….”
In a study conducted by Johns Hopkins University’s Center on Aging and Health and published in the American Journal of Epidemiology, lead author David Roth also reported on the benefits of caregiving. Of the caregivers surveyed — average age 64, more likely female and either white or African-American — family caregivers were 18 percent less likely to die than non-caregivers over the course of the six-year study.
According to Leah Eskinazi, director of operations for the Family Caregiver Alliance in San Francisco, many people find caregiving rewarding, and feel good about themselves for being able to give back to their parents who did so much for them. And for adult children who may have had difficult relationships with a parent, caregiving is an opportunity to heal some of the wounds they have carried with them.
For AARP’s Amy Goyer, who made the move across the country to be there for her parents, despite the challenges, the message is simple. “This is your time to be with them.”