One woman struggles to understand why her mom won’t leave her room. Another woman, whose mother now lives with her, wonders on really bad days how this became her life. A third is determined to remember her stepmother from a different time, before the disease that recently took her life made her so angry.
It’s a Tuesday evening at a tapas and wine bar in Marietta, Georgia, a suburb outside Atlanta, and seven women have gathered to honor one another.
“Here’s to caregivers,” says the organizer, as they raise and clink their glasses.
What’s happening in this corner booth is a “Daughterhood Circle,” a get-together for caregivers that’s organically sprouting up across the United States and Canada. Think of it as a mom’s group for a different and less joyful chapter in life.
While new mothers are showered with love and often share a path well-lit by friends and neighbors, the road is often dark and hard to navigate when it comes time to mother their own mothers, or any relative for that matter.
“It was super isolating and overwhelming,” says Elizabeth Miller, who recalls the “avalanche” of challenges she and her siblings saw coming as the health of her out-of-state parents began spiraling downward five years ago.
Between the six-hour drives to see them, the hospitalizations, the rehab, the loss and burial of her dad, the need to move her ailing mom, the selling of their condo and the time away from her own family and life, Miller felt like she was drowning.
Books and the internet could only offer so much. “I didn’t even know what to Google for,” she remembers.
That experience prompted Miller, 47, to become a certified caregiving consultant. She created a website, a blog and a podcast. And she became an early adopter and leader of a Daughterhood Circle. She’s been overseeing this one in Marietta for a few years.
At her side is a plastic folder full of resources, in case anyone needs professional contacts, legal guidance or financial tips. But more than anything, Miller shows up each month so caregivers can connect and know they’re not alone.
A need that will grow
Rather than talk about potty training wins and the best baby monitors, the people in this group might share tips on changing adult diapers and the cameras they use to keep tabs on mom. Instead of swapping pre-K and babysitter suggestions, they compare notes on assisted living facilities and home care options. But like so many in moms’ groups, they, too, worry that they’re not doing enough.
The burden they carry is on track to grow heavier.
The percentage of older adults in America will climb exponentially in the coming years, the US Census Bureau projects.
From 2016 to 2060, adults 65 and older will grow by 92%, from more than 49 million to nearly 95 million people. The number of Americans 85 and older will increase by nearly 198%, from 6.4 million to 19 million. And in the same time frame, those 100 and older will increase by a whopping 618%, from 100,000 to 600,000.
These stats back up what we already know: the needs of our aging population will continue to mount. So, too, will the need to support their caregivers.
The birth of an idea
The concept of a Daughterhood Circle grew out of a passion project launched by Anne Tumlinson, a longtime national expert in the field of aging and healthcare.
Tumlinson, 52, first stepped into this arena right out of college when, as a junior staffer for Georgia Rep. John Lewis, she was assigned to work on the aging committee. She’s spent her career steeped in aging research and public policy. She runs a Washington-based research and consulting firm dedicated to solving problems in the aging demographic.
At a time when life spans are increasing, but “health spans”– the length of time people are healthy – are not, she warns that we need to become “a more caring society, or else it’s going to be grim.”
In early 2015, Tumlinson introduced the website and blog Daughterhood.org to better inform her work by connecting her with family caregivers – the very people most concerned with the costs of long-term care, the gaps in services, the shortcomings of the current system.
On the opposite side of the country, two women in San Diego – including a banker-turned-certified senior advisor, Karen Van Dyke – were imagining a local support network for caregivers. They weren’t sure where to start in building such a group but then hooked up with Tumlinson, who helped them shape their vision and launch the very first Daughterhood Circle.
That pilot program, which began in September 2015, keeps going strong.
“It just gets more beautiful every time we meet,” Van Dyke, 63, says about the bonds that have since formed. “You’re connected for life.”
She recounts the story of how one woman late last year found herself overwhelmed with questions as she sat in an ER with her mom on the other side of the country. With one post on the group’s private Facebook page, answers and comfort came pouring in.
“It’s like having your own aggregate with you,” Van Dyke explains. “You need a brain trust on this.”
At any given time, there are between 16 and 18 active circles across the country, says Susan Rowe, the part-time coordinator who now vets potential leaders, answers questions and provides materials to get new circles started.
The groups need to be fluid because caregiving, by its very nature, is fluid, says Rowe. Unanticipated challenges pop up and local organizers, with the best of intentions, become swamped and need time off. There’s no room for demands when it comes to supporting caregivers. While some circles are well-established and consistently have strong turnouts, others are equally effective when two people sit together over coffee.
The group name seems to single out daughters, but organizers and participants insist their circles are for any caregiver who can benefit. “Daughterhood” is just a name, a word, they say, one that has a better ring to it than “sonhood” or “adulthood.” That said, it’s women who generally show up.
Since September of last year, Rowe says, more than 60 people have reached out wanting to form circles in their own communities. About 20 of those are currently working to get groups off the ground.
A place without judgment
A consumed caregiver can feel cut off from the outside world. Even the best of friends, if they’ve never been in this position themselves, can grow tired of lending their ears. In this circle, though, empathy reigns.
Together they travel through the intricacies of the healthcare system and grapple with questions big and small. What do you say to the parent who needs to stop driving? When should you start talking about hospice? How do I convince dad to relinquish control of his finances? What’s up with my mom stomping her feet and refusing to go to dinner?
Surrounded by people who can relate, they manage one another’s guilt. They offer a safe space to release steam when resentments brew – say, against know-it-all or absent siblings – and pressures build. They encourage each other to take breaks and look out for themselves.
Here, free from judgment, the women in Marietta wipe away tears and find humor in the sadness. They laugh about the mom who has conversations with herself in the mirror, the dad who left behind a collection of Playboy magazines, the mother who insists on watching sleazy TV.
These women are in various phases of their caregiving. Some have parents who can still dress and feed themselves, while others debate the efficacies of nursing homes. All of them have already said at least one goodbye.
With Miller’s prompting, the women go around the table to share what makes them grateful. Some of the answers on this night: grandchildren, my sister, alone time, the fact that mom has not fallen.
One woman, who’s cared for and lost both parents and her father-in-law to dementia and will spend the summer traveling to spread their ashes, takes a deep breath and says words that for so long felt elusive.
“It’s been a really long journey, but for the first time I can say I’m at peace,” she says. “I am finally at peace.”
And even though her darkest days of caregiving are behind her, she returns to this circle of supporters-turned-friends. She comes because these women propped her up when she needed it most. Now, armed with her experiences, she’s here for them.