6 women share the beautiful and sometimes brutal realities of family caregiving
While Americans of all gender identities serve as caregivers for aging loved ones, the fact is, this role still often falls on female family members. A 2020 report by AARP and the National Alliance for Caregiving found that 61% of today’s family caregivers are women.
Anyone who’s done it knows that providing care to a senior can be downright draining. According to the same report, 23% of Americans have experienced worsened health as a result of caregiving, and it’s caused at least one financial impact for 45% of them. It requires strength and sacrifice to provide unpaid care for a loved one, especially while juggling your own life and perhaps your own family.
But for all the challenges that come with the labor of love that is caregiving, family caregivers told us the experience helped them find an inner strength or intuition, forge deeper relationships, find purpose or gain a new outlook or wisdom.
We spoke to several women who have cared for or are currently caregiving for a family member. They opened up about the greatest lessons they’ve learned while caregiving. Here, their stories of strength, love and struggle.
1. You realize how unconditional love is
When Randi Cairns’ grandmother developed Alzheimer’s, Cairns moved her into her family home in New Jersey to care for her. At the time, Cairns’ husband was deployed with the military, and she was working full-time, going for her Master’s degree, raising three kids and pregnant with her fourth.
Caregiving for her grandmother on top of her existing obligations was never-ending and exhausting, Cairns remembers. There was the feeding, bathing, medication management, insurance and a litany of other details and logistics — plus behavioral issues caused by the disease. “My grandmother was confined to a wheelchair by day, but strangely at night had mobility and was prone to roaming,” she says. “I remember moving a reclining chair to right outside her door and calling it my bed and never feeling even remotely rested.”
Yet looking back, Cairns says the actual work of the caregiving wasn’t the hard part. “It was never hard because I loved her, and care was just what you give to those you love,” she says. However, as her grandmother’s memory deteriorated, the emotional aspect of caregiving became the most difficult.
“The most challenging thing was the part where she didn’t remember that she loved me too,” Cairns remembers. “But that was also my lesson. I was caregiving for someone who wasn’t able to give anything back. And it was a reminder that the most caring thing we can do is give our love unconditionally.”
2. You learn to trust your gut
Michelle Messmer’s in-laws are both in their 90s and have been in assisted living for several years. Messmer, who lives in San Diego, cares for them along with her husband and his sister.
Messmer says she’s figured out a lot on her own throughout the caregiving process. Her mother-in-law, who she calls Mom, lost a kidney and was diagnosed with Parkinson’s a decade ago. Messmer and her family advocated for Mom to be in hospice at an assisted living facility. Now, her care is more focused on comfort, and family visits are allowed.
“The endless trips to the doctor and hospital stays have taken their toll on all of us, and during COVID, we rarely got to see my in-laws,” Messmer says. “The sense of relief over knowing she won’t be shuttled to and from appointments and poked and prodded three-plus times a week is incredible.”
While Messmer says there’s no handbook on the right path to take with aging parents, she’s learned the importance of trusting herself and advocating for her loved ones. “I’m proud to say that I feel more equipped to handle these life-changing decisions that I never imagined I’d have to make,” she reflects. “There’s a sense of incredible satisfaction knowing that my actions brought us to a much more peaceful place. I now know that my intuition is reliable, and I can trust my gut when it comes to matters of the heart.”
"It requires so much patience, and I draw from a well I didn't even know existed."
3. You develop more patience and self-awareness
Jana Studelska of St. Paul, Minnesota, spent 12 years caregiving for her grandmother, and she now cares for her mother who’s 79 and suffering from dementia, diabetes, lung issues and mental illness.
Studelska says caregiving has been both a gift and a burden. It’s been gut-wrenching to spend years watching her grandmother and then her mother decline, but as a former birth doula and midwife, Studelska says she sees how caregiving for the elderly is similar work, just on the other end of the spectrum.
“I try to be a witness, and constantly acknowledge that I, too, see this going away or changing,” notes Studelska. “I see my job as being present and holding the space to let people make passage — for years — for this normal event of dying to unfold.”
At times, her mother’s behaviors and needs are childlike and frustrating. “It requires so much patience, and I draw from a well I didn't even know existed,” Studelska says. “She is doing the best she can in the moment, and I just have to go be with her there.”
While every caregiving experience is different, Studelska says both her mother and grandmother have been hard to care for. “It’s not been a string of Hallmark moments; they have been mean, irrational, combative, suspicious and angry,” she says.
She’s had to do a lot of self-work, including therapy, to not take it personally and hold space for the complex emotions. “[I’ve learned] all sorts of lessons in letting go, and remembering love, and being open to hearing some dark musings from an aging mind,” she notes. “If you think this isn't going to change you, you're wrong. It can make you bitter and resentful, or it can make you joyful and grateful. Most days, I feel all those things.”
Ultimately, Studelska chooses to hold onto the silver linings. “When it's all said and done, I have lived inside such amazing love from these two women, passing through these years with them,” she says. “I'm deliberate in my willingness to love them back, no matter how hard it becomes. This is dying in America. I've learned a good deal about how I want to live my own remaining years, and I have a clear dream for my own aging. It's been a gift.”
"If you think this isn't going to change you, you're wrong. It can make you bitter and resentful, or it can make you joyful and grateful."
4. You can find joy in service
Alexis Kerr, of Grosse Pointe, Michigan, says it was a joy to be able to care for her grandmother as she suffered from dementia in her late 80s. During time together, Kerr remembered the lessons her grandmother had taught her as a teenager.
“I would spend summers at her home in Florida, and she taught me how to cook and clean and things that young ladies needed to know as they entered womanhood,” she says. “Being able to care for her as an adult was a humbling treat. I cooked, cleaned, read to her and comforted her.”
Kerr always looked up to her grandmother as a leader, retired nurse and matriarch of her family, so she did find it difficult to mentally pivot to viewing her as the patient. “I think it was much harder for me than it was for her,” she says.
But the experience helped Kerr understand that there’s true joy in serving. “My grandmother taught me the essence of servant leadership and how to really care for someone,” she says. “I also learned how to lead with compassion and humility because I wanted her to be comfortable with me taking care of her. I needed her to feel like it was not a burden but a joyful experience for me too. I learned more about my family with the extra time we spent together, and I also learned a lot about myself. Caring for someone is the essence of true love.”
5. Your identity and priorities will shift
Recently serving as a caregiver for her grandmother in Northwest Arkansas when she was terminally ill with pancreatic cancer, Sarah Swofford says it was one of the most precious and challenging times of her life.
Being a full-time caregiver is a responsibility she says she never could have fully prepared for. Lacking professional support and experience, her small family had to learn and figure things out as they went, she says.
“My grandmother often cared for me throughout my life like a second mother; she took care of me at times when I had nobody else, and the greatest privilege I ever had was getting to partially return the favor,” Swofford says, “I would do it over again in a heartbeat.”
Looking back, however, Swofford wishes her family utilized outside help. She urges others in that position to do so if able, “so the time you spend together is mostly about the love, the memories, the tender special moments in this magical time that is the end of life. And all that doesn’t have to be mixed up with so much unknown, and fear, and trying to be a nurse when you aren’t.”
Swofford says it’s taken the better part of the last year since her grandmother passed to gain some semblance of normalcy and find herself again. Caregiving became such a core part of her identity that once her grandmother passed, Swofford felt lost. “I had stopped working to turn my attention to full-time caregiving for over a year, and suddenly my life went from chaotic and busy and full and even hopeful at times to … quiet, and over, and empty in many ways,” she says. “My grief was from missing her, my best friend, and it was also for the fact that I truly didn’t know where to go now or what to do with myself.”
She credits her loving husband for helping carry her through this time as she heals and finds new purpose in her life.
"Caring for someone is the essence of true love."
6. You learn to appreciate the little things
Sally Abrahms’ mother was a former university English professor, and well into her golden years, she still participated in three book clubs. But following a stroke, she lost her ability to read or see well, taking away a part of her life that had brought so much joy.
Abrahms was based in Boston, a few hours away from her mother’s long-term care community, and struggled to come up with ways to give her mom joy and pleasure following the stroke. Then Abrahms remembered how when she was a child, her mother loved reading ‘A Child’s Garden of Verses,’ a book of poetry by Robert Louis Stevenson, to her — and later, to her daughter.
“I thought about how much she adored Stevenson’s poetry, so I would drive two hours to visit with that beloved book,” Abrahms remembers. “We would sit in her living room and I would read her those same poems. She remembered all the lines. I would read out most of a verse and, with a big smile and a laugh, she and I would complete it together.”
That one book, and those precious moments together, brought the entire family joy during a difficult time. “That book and my daughter’s memory of having her grandmother read it to her had been so special, that at my mother’s funeral, my daughter chose to read one of their favorite poems,” Abrahms says. “And now she has ‘A Child’s Garden of Verses’ on her toddler son’s bookshelf.”
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