OHIO — Caregiving is one of the hardest, yet most rewarding jobs there is. Sarah Gormley, an art gallery owner and author, knows the experience firsthand.
“Caregiving is brutal,” Gormley said. “And it's brutal, even under the best circumstances.”
In 2017, Gormley’s mother, Sarah, was re-diagnosed with breast cancer that metastasized. At the time, Sarah Gormley was a successful marketing executive, climbing her way up the corporate ladder, living in Chicago, New York and San Francisco, only to move home to Chandlersville, Ohio at the end of 2017 to take on a job she never thought she’d have, helping her mom peacefully die.
“It was the most life-changing decision I’ve ever made,” Gormley said. “I wouldn’t even say that I necessarily viewed myself as a caregiver while it was happening. I felt like a daughter who was coming home to be with her mom, and it wasn’t even a real choice. I just did what felt right.”
In her new memoir “The Order of Things” Gormley details that life-changing decision, describing the immense difficulty of being a caretaker, all while teaching people how she balanced grief with gratitude and loss with love.
“When you least expect it, it hits you and you have to just roll with it and be kind to yourself and let yourself experience the emotions to get the goodness, to get the gratitude, and ultimately end up with the joy of looking back and knowing you had this wonderful mother,” Gormley said. “Part of the reason the title is “The Order of Things” is that so much happened and changed in radical ways that I was really trying to make sense of it. And life isn’t always a straight line or perfect order. It’s really messy.”
Gormley’s not alone.
As the Baby Boomer generation ages, adult children are increasingly taking on the responsibility of caring for their parents.
Jenny Carlson, the state director of AARP Ohio, said millions of Americans desire to age in their homes, but soaring health care costs and a shortage of health care workers means many family members with no medical training are becoming caregivers out of necessity.
In Ohio, AARP projects the average cost of a nursing home to be more than $6,000 per month, but can vary depending on location and level of care. The high price tag is forcing some family members to sometimes move across state lines to care for their parents or change careers to have more flexibility. AARP said approximately 42% of Ohio family caregivers report they had to leave the workforce or reduce hours because of caregiving responsibilities.
“Most people plan for their future, but most people do not plan to be a caregiver,” Carlson said. “As a society, we need to provide more emotional support for caregivers. We need to talk about it as a society. We need to embrace what caregiving is. The definition of caregiving means so much to everyone, but it’s a personalized definition.”
Carlson, who’s currently a caregiver to her mom, said being a caregiver is often viewed as a personal burden and she’s working to change the narrative. She said society needs to help early learners understand the value of jumping into careers such as being a physician, nurse, dietitian, pharmacist, hospice aide and any other career that helps support individuals. She said AARP also works to educate companies and the employer community to understand the value of flexible work hours and taking time off.
“It’s a multi-pronged approach,” Carlson said. “I do think that we need to make sure that we’re educating. We’re starting early talking about the need for intergenerational living and intergenerational experiences, making sure that individuals know what it means to be a caregiver. We also need to start early about what it means to provide care. You know, what is the field of gerontology? What is the field of being a dietitian? What is the field of being able to provide care to those loved ones in a nursing home setting?”
Caregivers are known as unsung heroes. Carlson said in Ohio caregivers provide about $21 billion of unpaid care each year and typically have an increased risk of chronic diseases as they often neglect their own health while caring for others.
“There’s significant resources out there. Take the time for yourself. It’s important. Respite,” Carlson said. “It’s a sacrifice, but it’s in some regards, an easy sacrifice because there’s so much return and personal satisfaction that you take in providing the care for a loved one to make sure that they’re getting the right systems and support and the social interaction. Caregiving should be embraced. It’s a wonderful blessing, in my opinion.”
AARP projects caregivers spend at least $7,200 a year on out-of-pocket costs related to caring for a loved one. If you need to hire a home health aid, the nonprofit said that can cost well over $4,000 per month. Gormley said while she’s fortunate her family could hire extra help from trained professionals to help care for her mom, she knows that’s often not a reality.
“And if you don’t have the financial means, definitely ask for help,” Gormley said. “Ask your friends. Ask neighbors. People who have gone through it before will be willing to help, because sometimes you just need a break.”
She also encourages caregivers to make sure they take care of themselves, continue pursuing their passions, be present, don’t set timelines and seek the relief of laughter.
“You have to just be in the moment of the mess,” Gormley said. “You don’t have to pretend like it’s easy or that it’s not difficult. It’s awful. It sucks so bad. But you can do it. And you will find strength, these, like, reservoirs of strength and love that you didn’t know existed."
Now a new author and the founder and owner of Sarah Gormley Gallery in downtown Columbus, Gormley doesn't shy away from reflecting on the hardest job she’s ever had. An often thankless job, but one she’s thankful for.
“In the strange messiness of life, for me, it turned out that coming home to be a caregiver was a catalyst for change that gave me the life I have today,” Gormley said. “Being with her at the end is something I cherish. And I hope she's proud of me.”
“The Credit for Caring Act” reintroduced this year by Representative Mike Carey is a bill that looks to help ease the financial burden of caregiving by providing a tax-credit for eligible caregivers. It’s currently being circulated in the House with bipartisan support and Carlson said AARP has endorsed the bill. Carlson said AARP is also continually working with legislators in the Ohio statehouse to introduce bills to further help Ohio caregivers.
AARP has created a free, customized Ohio family caregiver guide. You can view it here.
If you'd like to check out Gormley's "The Order of Things," you can visit here or order it from your local bookstore.
