Two years ago Paula Kiger’s existence became unrecognizable. She had just quit a job of nearly 20 years to embark on a new life when her 84-year-old father-in-law took a tumble. Along with other family members, she realized he could no longer live on his own.
“He moved in with us at that point,” said the resident of Tallahassee, Florida.
Kiger became his primary caregiver and began living a life on the edge of her seat with the anthem of “I hope he doesn’t fall” ringing in her head.
Kiger is one of over 43 million caregivers across the country who have reconfigured their lives for loved ones, according to a joint study by AARP and the National Alliance for Caregiving.
Caregivers are the cheerleaders, advocates, taxi drivers, maids, organizers and schedulers. Their role can include helping with the activities of daily living such as walking, helping with personal care issues such as bathing, or even performing complicated medical tasks, often with little or no training.
Unpaid caregiving cuts across age, ethnicity and relationship boundaries. Most caregivers are employed, 60 percent of them are women about 49 years old and either married or living with a partner, and 28 percent have a child or grandchild under the age of 18 living in their household. Kiger has a 16-year-old son at home and a teenage daughter in college.
And, when people take on the caregiver role, it impacts their stress level and their health; the more time they spend caring for a loved one and the more difficult the care is, the higher the stress.
“Caregiving has contributed to my stress eating in combination with the fact that I work from home,” Kiger told LifeZette. “But, I am a fitness fanatic so, while I have to do some maneuvering to get out and make a class or run, I remain dedicated to my health. It’s a necessity for my sanity.”
Marcia Brubeck of Hartford, Connecticut, knows about stress-induced anxiety. A social worker, attorney and writer, she is also a caregiver who has been taking care of her good friend since they first met nearly 20 years ago. They lived together for a time until her friend, Marna, now 85, could no longer negotiate the stairs in the home they shared.
Though Marna has a brother, a sister and a niece, “I am her principal caregiver,” Brubeck, 68, told LifeZette.
In addition to working full time, Brubeck helps her friend who has arthritis, spinal stenosis, complications from excessive radiation therapy, and macular degeneration. She is also deaf. Brubeck gets her groceries, ferries her to doctor appointments, accompanies her on social outings, takes her car in to be serviced and does her laundry.
Plus, “I pinch-hit financially for her, though her siblings manage her finances. Still, whatever she needs, I’m usually there to provide it.”
The nurturing role is a societal expectation, Brubeck told LifeZette. Many women grow up conditioned to take over that role in the family.
But the caregiving role produces symptoms of burn out, which Brubeck sees even in the clients in her own practice. “I work with older women. Most are caregivers, and it’s difficult persuading them to take care of themselves. They have the idea it’s selfish, but you have to be.”
The NAC and AARP Public Policy Institute revealed in a 2015 report that 60 percent of those providing care are women, and they average around 49 years old.
Caregivers spend some 24.4 hours a week, generally speaking, providing care to their loved one. Many provide upwards of 41 or more hours of care a week. And they are increasingly performing tasks that nurses typically perform.
When asked about the impact caregiving has had on their health, 22 percent of caregivers felt their health had gotten worse as a result of caregiving. The most vulnerable to negative physical, emotional, and financial health impacts include higher-hour caregivers (29 percent worse health), those caring for someone with a mental health issue (34 percent), co-resident caregivers (30 percent), those doing medical/nursing tasks (27 percent), and primary caregivers (25 percent).
Yet the study also found that a majority of caregivers are not asking for help in their role.
Many who have had the privilege of caring for a loved one understand the stress and the risks. They also wouldn’t have it any other way.
“This is the time in our lives to be doing this. It’s given me a psychological breather and time to assess things career-wise,” Kiger said. Besides that, she added, “I was extremely close to my mother-in-Iaw, who passed away in November, 2013. Part of it is a sense of honoring her memory.”
There are tax breaks if you qualify for a dependent care deduction, said Amy Goyer, an AARP family and caregiving expert from Phoenix, Arizona, where she lives with her father, who has Alzheimer’s.
“If your loved one is on Medicaid, that may provide a cash subsidy, but it varies from state to state,” she said.
Check your local agency on aging and ask about available programs. Local groups would also know about respite care programs and refer you to appropriate community agencies, Goyer said. If your loved one is a veteran, the Veteran’s Administration also has programs to access.
“Lots of people think their life is on hold while caregiving, but you can’t put your life on hold,” said Goyer. “I need to experience it and enjoy it and whatever life brings. I’ve realized I’m not a victim. I make the choice to care and I feel good about that.”