“I flew solo,” says Jane Barton, recalling that “by nature, nurture, and necessity” she became the primary caregiver for her mother who suffered a long and debilitating illness. Barton was only 15 years old when that solo flight began.
Decades later, she says the biggest lesson she learned from the experience is still indelibly etched in her psyche: “Going solo extracts a tremendous toll — physically, emotionally, spiritually, and psychosocially.”
And today, as author of Caregiving for the GENIUS and founder of Cardinal, LLC, which provides educational programs and advice to people dealing with aging, illness, and the end of life, Barton professes she has found a better way. She’s dubbed it “collaborative caregiving” — an approach that encourages everyone affected by a caregiving situation to participate and fill whatever niche they can: helping with respite care, housecleaning, cooking, medical advocacy, companionship, financial assistance, whatever is needed most.
Barton says the benefit to such collaboration is that it squarely addresses the isolation so often experienced by both those giving care and those receiving it. While it sounds like nirvana or an oversimplification of a tough problem, Barton also acknowledges that collaborative caregiving also takes work, perseverance — and most often, the willingness to let go of some hidebound tendencies, notably: the resistance to assistance that affects both those in need of are and those delivering it.
‘Just Fine’ Signals a Train Wreck
Barton urges a simple test to determine whether caregivers on the job are overstressed and overwhelmed: Ask them how they’re doing. “Those who say ‘I’m just fine a bit too insistently are sending out a red flag that a train wreck is imminent,” she says.
Indeed, caregiving can become particularly fraught when several family members are involved, especially when one person sees himself or herself as the “solo, primary caregiver,” which is the common cultural model.
But in collaborative caregiving, all involved are called upon to help create a network of care rather than delegating the many tasks involved to a single person, or be browbeaten into stepping out of the meaningful picture. “Everyone can contribute, which enriches the experience and lets everyone participate,” says Barton. “No one person is doing all the things required all the time.”
But achieving such harmony often requires a shift in semantics, and an even more primal shift in self-perception and the ability to let in others generously. And despite the recognition that flying solo as caregivers may be hazardous to health, there are many deeply-rooted reasons people tend to resist such changes.
- Fear — an apprehension that we may by rejected by those we ask for help
- Privacy and secrecy — the tendency to keep health matters out of the public eye or to shield family secrets, such as alcoholism or domestic violence, from outsiders
- Pride — one person’s feeling that he or she can and should be able to “do it all”
- Denial — the tendency to ignore a tough reality such as a medical prognosis in the hope it will just go away
- Cultural norms or family traditions — the insistence that “we care for our own”
- Control — the stingy belief that we are the only ones who can do something The Right Way
Of these roadblocks, Barton says the last two are the thorniest to overcome.
To illustrate a breakthrough in shedding unhelpful family traditions, she tells the story of a man she counseled who alone ministered to his terminally ill wife. When asked how he could best get help in his caregiving duties, he became fiercely indignant. “I am not a caregiver,” he huffed. “I am a husband who took a vow to be with his wife in sickness and in health!”
She then reframed the question to him as: “What, as a husband, could you do that no one else can do?” He suddenly glowed, recalling how he and his wife loved to look at flowers together — delighting in naming the different types of blooms. When told that his friends wanted to step in to help make that possible, it immediately overcame his resistance to assistance. It just helped to redefine what it meant to be a husband.
Barton adds that the need for control is often the biggest impediment to being open to a collaborative caregiving model. As an example, she somewhat sheepishly recalls how she reacted when acting as a teenage caregiver. While awaiting her mother’s discharge from hospital to home, a neighbor stopped by to ask how she could help prepare things, alighting on putting clean linens on the bed. The young Barton thought the neighbor was denigrating her skills as a caregiver, and upbraided the neighbor for putting the flat sheet on the bed with the floral side facing the “wrong” way. She realizes now, decades later, that she needed to control the make-up of the bed because she couldn’t control the real things going on around her: illness and death. And these many years later, the helpful neighbor’s advice still rings in her ears: “Just enjoy the time with your mom.”
Help on the Horizon
Barton notes that many family members, after dedicating themselves to caregiving tasks, have become somewhat isolated from their neighbors and friends — and simply feel there is no one they can reasonably ask to pitch in to help. This often begs reality, as most people generally do want to lend assistance, and in fact feel honored to be asked.
She emphasizes the necessity to be specific and direct — to let others know exactly what you need: someone to step in and shovel the snow when it collects, act as a companion on Monday nights from 6 to 8 pm, make dinner every other Thursday. Most people, without too much brain-wracking, can even come up with a list of people who have actually asked how they can help in the past. Being specific about those needs helps everyone.
Other caregivers lament that the additional task of organizing additional helpers only adds to their sense of feeling overwhelmed. That points up one good use of the internet. Some people organize a Facebook group page available to those in their new caregiving circle — spelling out specific tasks and opening the way to sharing and coordinating information and resources. Other online sources, including Caring Bridge and Lotsa Helping Hands provide helpful structures for communicating with and scheduling a community of caregivers — and provide it free of charge.
Heed the Geese
Finally, Barton points to a favored analogy for collaborative caregivers that is often invoked by others as nature’s way of illustrating the importance of sharing leadership and acting as a team: the wisdom of the geese.
When the birds migrate in a V formation, their flapping wings create updrafts for the others that scientists posit adds at least 71% greater flying range than if each bird flew on its own.
“Geese seem to understand that flying solo is a literal drag,” she says.