The Burden of Being a Caregiver
Janice Kiecolt-Glaser compares the painful journey through Alzheimer's disease to a runaway locomotive. “There is no way to stop the train,” says Kiecolt-Glaser, whose husband was diagnosed with the devastating illness in 2014 and now is receiving hospice care at First Community Village. While her husband's decline has been relatively rapid, “I've spent years grieving at this point,” she says.
It is bitterly ironic that she and her husband, Ronald Glaser, dedicated much of their professional careers to researching the effects of stress on caregivers. Kiecolt-Glaser is director of the Institute for Behavioral Medicine Research at the Ohio State University Wexner Medical Center. Her husband was a professor of medical microbiology and immunology at OSU. Together, they published landmark studies on caregiver stress and its negative impact on health.
Kiecolt-Glaser's professional experience didn't exempt her from feeling stressed, guilty and overwhelmed at times—typical reactions to caring for someone with Alzheimer's. “It reached the point where he couldn't be left alone. He was falling, and I'd have to call the squad because I couldn't lift him. He'd forget where he was in the house, and he wasn't eating. The constant vigilance on top of working was really wearing.”
Knowing that Alzheimer's is a progressive illness with no turning back, Kiecolt-Glaser made the difficult decision to place Ron in a residential facility. “I hated to do it. I felt really guilty,” she recalls.
The burden of caring for someone with Alzheimer's is great, and expected to increase significantly in the next 30 years. About 5.7 Americans live with the disease today; in 2050, that number could be nearly 14 million.
Costs are staggering as well. The annual costs associated with Alzheimer's and other age-related dementias are estimated at $277 billion and could climb to $1.1 trillion in 2050. “Alzheimer's takes a devastating toll,” says Tricia Bingham, director of programs and services for the Alzheimer's Association Central Ohio Chapter. Most people live an average of four to eight years after diagnosis, but some survive up to 20 or more.
Compared with other caregivers, twice as many Alzheimer's caregivers report substantial emotional, financial and physical difficulties, according to the national Alzheimer's Association. Many more suffer from depression compared to non-Alzheimer's caregivers, the association says.
Kiecolt-Glaser says unpredictability and uncontrollability—two hallmarks of Alzheimer's—are powerful stressors.
In the decades she and her husband studied stress on caregivers, they found that people under stress were less able to respond to a pneumonia vaccine and showed slower wound healing, both of which indicated a weakened immune system. Age also tends to compound those responses, she says.
The couple's research defined caregiving as spending more than five hours a week in activities associated with their loved one's illness, including taking care of finances and personal business, working with the residential facility and actual visits. “There is wear and tear even if you're not physically there,” she explains. “It's watching someone you love deteriorate.” Her years of work experience told her this: “You darn well better take care of yourself.” To that end, Kiecolt-Glaser has made it a point to stay in contact with good friends, pay careful attention to her sleep, eat well and get physical exercise.
The caregiver's need for respite is vital, says Dr. Douglas Scharre, director of the Division of Cognitive Neurology at the Wexner Medical Center. He urges caregivers to make it a habit. “Sometimes the caregiver doesn't want to until they're in crisis mode and then they collapse. I think we as physicians need to do a better job asking caregivers, ‘Are you surviving?' ”
As a physician in regular contact with families under duress, Scharre tries to assuage some of the guilt they feel. “Some people say they will never put their loved one in a nursing home—‘til death do us part'—but in fact the patient actually needs that cognitive and social stimulation and activity that you can't provide at home. Your role is to have them have the best quality of life, wherever that may be.”
Tom Moore, whose wife Lavonne has been living with Alzheimer's for about 20 years, has set up their apartment in a Delaware senior living community as a kind of workshop, with puzzles and other activities to keep his wife of 65 years busy. Still, he says, “I cannot provide enough activity for Lavonne. She follows me around like a puppy dog.”
Lavonne, 86, attends a daycare program three times a week, both for her and her husband. They do Tai Chi together and walk in parks. He knows that one day, he no longer will be able to care for her in the apartment, and she'll move to the center's memory unit. “It will be traumatic for me as well as Lavonne.”
Like Kiecolt-Glaser, he urges caregivers to get ahead of the situation if possible, getting legal advice, obtaining powers of attorney and getting on waiting lists for care facilities if necessary.
A voracious reader, he advises caregivers to educate themselves about the disease and what to expect and take advantage of support groups and workshops offered by the Alzheimer's Association and other organizations.
He recalls a new person coming into a support group, overwhelmed and bewildered. “We told them we're your family now; we can tell you what's ahead.”
Emily Caldwell, whose mother died of Alzheimer's in 2015, says she found help at support groups when she felt like she was “never doing enough.” Even if someone can't physically get to a meeting, she says, “There are ways to find a community” through online forums, message boards and other avenues.
A media relations manager at Ohio State University, Caldwell has been a writer/editor in higher education for years. She wrote about her mother's Alzheimer's journey in a blog that she started as a way to keep family and friends up to date.
“I was fairly angry about the situation,” she says. “The blog gave me the opportunity to reflect and to learn to appreciate that I was her caregiver.”
Laurie Allen is a freelance writer.
Where to find help
Knowledge and a sense of community can help ease the burden for Alzheimer's caregivers.
Alzheimer's Association Caregiver Center includes a wealth of information, education and online support, as well as opportunities for caregivers to participate in research.
The Alzheimer's Association mobile phone app helps coordinate care, manage information and access resources. Another app is Caregiver Buddy available online.
The 36-Hour Day
The 36-Hour Day, by Nancy Race and Peter Rabins, has been called the definitive resource for caregivers.