The Alzheimer's Digest: The Value of Family Caregiving

When 52-year-old Rachel brought her elderly mother to visit the adult daycare center I managed, she was clearly overwhelmed. She had recently undergone both surgery and divorce, was providing part-time care for her grandchildren, worked nights make ends meet -- and was providing 24/7 care for her 75-year-old mother, Marilyn, whose recent stroke had significantly affected her memory.

Rachel came to us because she hoped our adult daycare program would provide Marilyn with a welcome break from the daily routine at home and give her a chance to socialize with other seniors who shared and understood her dementia-related challenges. It would also provide Rachel with the extra time she desperately needed to manage the many other challenges in her life.

I sent them both home with the program enrollment packet, which included forms for the "Senior Participant" -- these were questions about Marilyn. There were also forms for the "Caregiver" -- these were the forms we wanted Rachel to complete about herself.

Rachel returned the packet to me the next morning, with only half of the forms completed. She had filled out the ones for her mother. But she'd crossed out the forms labeled "Caregiver," with a note saying, "We cannot afford one."

Rachel simply didn't see herself as a caregiver. When I asked her about it, she responded that she was "just Marilyn's daughter." She said she was fulfilling her duty to her aging mother, and she did not view it this work as a job, even though she was the only person providing round-the-clock care for Marilyn. When Rachel saw the word "caregiver," she interpreted it as referring to a trained professional from an agency, not to herself.

I encountered this reaction time and time again over the years, with new families who came to the adult daycare center as well as with family members who attended the monthly caregiver support group I facilitated. Individuals focused on the family relationships they had with their older loved ones -- they were sons and daughters, nieces and nephews, husbands and wives. In some cases, they were even grandchildren, friends, or neighbors. But they did not consider themselves "caregivers." As a result, they tended to discount the amount of time and energy they poured into caring for their older loved ones. They wrote it off as a familial or social responsibility -- a call of duty.

It became an important part of my work to help change this. I wanted to help family caregivers begin to recognize and value the important caregiving work they were doing. I emphasized the following:

Caregiving is a real job -- one with tremendous economic value attached to it.
According to the Family Caregiver Alliance's website, there are an estimated 65.7 million informal caregivers (29 percent of the U.S. adult population) providing care to someone who is ill, disabled, or aged. These informal caregivers are unpaid and defined as "a spouse, partner, family member, friend, or neighbor involved in assisting others with activities of daily living and/or medical tasks."
These numbers will continue to rise, especially as an estimated 77 million baby boomers age and need more assistance with their activities of daily living. It's important for informal caregivers -- no matter what they choose to call themselves -- to recognize that they are part of a critical pool of individuals who are the largest source of long-term care services in the U.S., services valued by the AARP Public Policy Institute at $450 billion per year in 2009.
Caregiving is often an emotional roller coaster.
Accepting full or even partial responsibility for the life of another human being is demanding, challenging, and unpredictable at best. Most parents will acknowledge this truth when caring for children, but most caregivers of older adults tend to forget about it. However, it's OK to feel happy, sad, exhilarated, exhausted, angry, or frustrated while fulfilling caregiving duties. These mixed and sometimes confusing emotions are normal as caregivers struggle to provide the best possible care for their loved ones. Experiencing negative feelings along with the positive ones doesn't make an individual a bad person or caregiver -- or an uncaring son, daughter, husband, or wife. It simply makes that person human.
It is important to pay attention to these emotions. If they begin to increase in intensity or frequency, it can be a sign of impending caregiver burnout. Having regular breaks is essential so that caregivers can maintain their own mental and physical health and ensure that they can sustain their caregiving responsibilities for the long haul. Options for respite care include home care, adult day care, informal help from family and friends, and short-term residential care. Costs vary based on the type and duration of care needed. These services can be invaluable for people who are mostly able to manage their caregiving duties on their own, but just need a little extra help.
Caregiving is (usually) a choice.
Special situations exist, but usually individuals have some degree of choice about whether or not to serve as the primary caregiver for an older loved one. Just as some people aren't well suited for careers as doctors or engineers, some individuals aren't cut out to be full-time caregivers. In some cases, it's best for someone else to take on that role so that people can focus on preserving their relationships with their older loved ones.
Rachel eventually came to this realization. Even though our adult daycare program was a huge help, she simply could not continue being her mother's sole caregiver, given everything else she was juggling. She found a well-run senior living community located two miles away for her mother, and now she visits her for two hours every day. Mother and daughter can maximize the precious time they have left with each other, while Rachel has more time and energy to focus on charting a new course for her life.

Ultimately, caregiving is an invaluable lesson that teaches us the importance of finding balance between the different areas of our lives. Like any job, it requires realistic expectations, openness to collaboration and teamwork, regular time off to recharge, and the ability to recognize that it's impossible to be perfect -- mistakes and failures happen, and caregivers need to learn from them and move on as best they can. Caring for another human being is the ultimate act of love, but it's vital not to lose sight of oneself during the process.

Family caregivers must learn to delegate; let go of things that truly don't matter; and honor their own physical, emotional, and financial boundaries. By finding balance in their own lives, they will be empowered to build healthier and more mutually satisfying relationships with their older loved ones.