Roughly 65 million people in the United States are caring for a chronically ill, disabled or elderly family member. The vast majority are also raising kids and holding down full-time jobs. And they’re burning out.
November is National Family Caregivers Month, and its focus is supporting family members who are taking care of relatives. “So many caregivers suffer from stress and health issues,” said Susan Baida, 42, co-founder of eCareDiary.com, a website that offers online tools to help caregivers understand the diverse aspects of their duties, including not only medical issues, but legal, financial and sibling rivalry issues (a common problem in these situations).
Baida’s father-in-law, who had Parkinson’s disease, saw his condition worsen in his early 80s. Baida and her husband, John Mills, took intense care of him the last few years of his life. He died in 2007. Now, Baida’s 92-year-old grandfather is living in a nursing home with dementia. “My husband and I both have experience in the healthcare and technology fields, and we were stunned at how decentralized the services are. The hospitals don’t talk to the long-term care service providers who don’t talk to the insurance companies. The caregiver becomes the CEO.”
To prevent burnout, Dr. Kathy Johnson, Ph.D., founder and chief executive officer of Home Care Assistance, suggests a number of steps caregivers can take to protect their health and stress levels. She recommends that caregivers stay involved in personal hobbies, eat a well-balanced diet, join a caregiver support group, and rotate the caregiving responsibilities (bathing, eating, medication) among family members to vary the duties. If you feel guilty for taking time for yourself, stop. “The best role you can play is that of son, daughter, loved one and to rekindle the original relationship you had with the person you’re caring for. There is no guilt in that,” said Johnson.
To help manage their own health and stress levels, Baida and her husband exercised together. “It got to the point where there was so little time for any focus on ourselves as a couple—we couldn’t take vacations—that exercise was our respite. We would go to the gym and work off our stress and anger.” Baida’s husband also sought counseling, which turned out to be a saving grace. “I couldn’t be his sounding board because I wasn’t a neutral party,” Baida said.
Diane Kelley, 55, a resident of Germantown, is caring for her parents, both in their early 80s, who live on Lake Winnepesaukee in New Hampshire. Kelley made the nine-hour trip once a month this past summer after she noticed her mom and dad, who both suffer forms of dementia, struggled to manage their daily activities. She called them daily until it became too much. “I was trying to coordinate their medical care, their calendars, and help them with their meds.” Her parents would get confused and often forgot the conversations Kelley had had with them just the day before. Kelley solicited the help of her siblings and her parents’ grandchildren. This winter, the family came to a mutually agreeable decision to put Kelley’s parents in a temporary care facility.
Now, Kelley wishes she had talked about long-term care issues with her parents in the past, when they were able to make rational decisions. Baida thinks that’s a good idea. “If there is a history of stroke or heart disease in your family, ask your parents what their wishes would be if they were afflicted,” Baida said. And get legal documents in order. Called advanced directives, the documents allow people to dictate who they want to be in charge of their health care if they become physically or mentally incapacitated, and allows people to choose what life-sustaining measures they do—or don’t—want. Finally, Baida recommends long-term care insurance. “The earlier you sign up, the less expensive it is.”
By the Numbers
66: Percent of family caregivers who are women
20: Hours of in-home care family caregivers provide each week (often unpaid)
4 to 8: Number of years caring for an Alzheimer’s patient can shorten your life
46: percent of caregivers who are clinically depressed
Resources for caregivers
With locations in Bethesda, Northwest D.C. and McLean, Home Care Assistance specializes in hourly and live-in care for older adults. www.homecareassistance.com
The National Council on Aging is a non-profit service and advocacy organization headquartered in D.C. with a mission to improve the lives of older Americans. www.ncoa.org
Capital Hospice offers physical, emotional, and spiritual assistance for people in life transitions, such as illness and dying. It has offices in Maryland, D.C., and Virginia. www.capitalhospice.org