Today, more than one in five Americans are caregivers, providing care to an adult or child with special needs at some time in the past 12 months. Given this sobering statistic, I’m surprised we do not see as many health narratives written by caregivers as, say, doctors and patients, at least not in print.
Caregiving is emotionally draining. However, writing when you are in a caregiving role is one of a handful ways to console and take care of yourself, to improve your well-being. Whether you are a caregiver in a hospital or home or places in-between, writing can be a form of nurturing and renewal, an answer to the question that so many caregivers ask: “Who will take care of me?” Let’s face it: Caregiving can make your own health worse, so say about a quarter of the people in caregiving roles.
Once every five years, AARP takes the pulse of caregivers in the United States. The most recent survey is from 2020. Although the results may be tinged by COVID-19, the flavor comes through. Here are the main takeaways as discussed in the executive summary:
- Nearly one in five (19%) of Americans are providing unpaid care to an adult with health or functional needs.
- More Americans (24%) are caring for more than one person, up from 18% in 2015.
- More family caregivers (26%) have difficulty coordinating care, up from 19% in 2015.
- More Americans (26%) are caring for someone with Alzheimer’s disease or dementia, up from 22% in 2015.
- More Americans (23%) say caregiving has made their own health worse, up from 17% in 2015.
- Family caregiving spans across all generations, including Boomers, Gen-X, Gen-Z, Millennials, and Silent.
- 61% of family caregivers are also working.
The AARP survey also paints a picture of the many different faces of caregivers stepping up to help family and friends: ethnic minorities, LGBTQ+, students, and so on – essentially individuals from all walks of life. Career disruption and “losses in living” are common consequences of caregiving. Unfortunately, caregiving is a growing reality in the U.S. as the proportion of older adults with cognitive impairments increases, and helping resources decrease, including eldercare and health insurance.
Caregivers report physical, emotional, and financial strain, with 2 in 10 reporting they feel alone. Thus, support for caregivers and their recipients is especially critical to counter the epidemic of loneliness. The AARP survey notes, “Without greater explicit support for caregivers, their overall responsibilities will likely intensify and place greater pressures on individuals within families, especially as baby boomers move into old age.” That’s why, despite various solutions proposed to address this national crisis – many of them complex and politically non-starters – something as simple as writing about the caregiving experience and sharing those experiences with other caregivers can bear so much fruit.
There are very few national, centralized well-organized movements of writers or writing programs for caregivers, but there are certainly local chapters. Most of them are organized by communities, where all comers are welcome in person or online, or by disease type, e.g., Alzheimer’s, childhood disabilities, and others. Some offer weekend retreats and workshops (who has the time for a “retreat,” you ask?). One workshop advertises: “No rules. Just write. Write time. Write place. Write now.” Here are some examples of caregivers who participated in that group writing program:
- A woman taking care of her mother who has Alzheimer’s disease.
- A mother taking care of a child who has developmental delays.
- A husband whose wife sustained a brain injury in a car accident.
- A father whose son has a serious mental illness.
- A woman whose sister died from cancer and who, like her fellow caregivers, wants to begin sorting out those experiences in writing.
Research shows that family caregivers who list self-care as a priority can better provide care, are at lower risk of burning out and becoming ill, and find more joy in their role as a caregiver. Writing is a form of self-care; it creates a sacred space and nourishes and restores our vitality. While taking care of a loved one, you may have lost much of your former lifestyle including social supports and activities. There is a good chance you are feeling stressed and isolated and need to develop or acquire healthful self-care practices. Think of writing as care for the caregiver, a good nosh, or chicken soup for the soul.
An interesting observation about narratives of family caregiving is that diverse themes emerge, suggesting that caregivers interpret different meanings despite often similar experiences. In addition, a narrative approach may help caregivers transition into the role needed for coping with the eventual loss of a loved one. Although expressive writing cannot change the reality of a loss, it can help caregivers to reframe the significance or story related to that loss.
Even if you don’t think of yourself as a writer, you have a story. A woman from British Columbia wrote:
“I started just writing stories about what was going on; my thoughts, my feelings. Some of those actually became published in the local senior’s newspaper, which I’m grateful for. As it turned out, the published articles not only helped me, they helped others as well.”
So, organize your thoughts on paper, and if you can do it in the company of others who “get it,” so much the better.
Arthur Lazarus is a former Doximity Fellow, a member of the editorial board of the American Association for Physician Leadership, and an adjunct professor of psychiatry at the Lewis Katz School of Medicine at Temple University in Philadelphia, PA. His forthcoming book is titled Every Story Counts: Exploring Contemporary Practice Through Narrative Medicine.