When Caregiving Changed: Four Stories of Acceptance and Adaptation

In these essays, four adult daughters look back on their caregiving journeys and describe the practical solutions and mindset changes that helped them find a bit of levity again. One daughter writes about her father’s denial of her mother’s diagnosis. Another writes about how an emotional outburst led to a healthier, more loving dynamic with her mother. One writes about the responsibility of caregiving at a young age. And one writes about what she did to allow her mother to continue her lifelong passion of acting.

“A Story of Role Reversal and Unbreakable Love”

Susanne White describes the complex emotions that came with stepping into a caregiving role for her mother, and the push-and-pull dynamic that ensued. 

“My mom was the boss….she was the CEO of our family, and she wasn’t planning on stepping down,” writes White. Over the first few months after the diagnosis, the two struggled with grieving this new reality and White’s mother tried to hold steadfast to her independence. White grew increasingly frustrated.

White writes about the moment that shifted her perspective: “One Sunday afternoon when I was helping her take a shower, I had her sitting on the edge of the tub in a big fluffy towel while I dried her off. She suddenly put her face in her hands and began to sob. She then said, ‘It’s so hard to have you help me.’”

This intimate moment helped White realize that as much as she was suffering as she watched the mother whom she had always seen as all-powerful become helpless, her mother was experiencing an even more intense version of grief. 

A lesson from White for other caregivers: “Role reversal is never easy, but it doesn’t have to ruin our lives or what we mean to each other. Love keeps us in the present and saves us from the past.”

“Despite Dementia, My Actor Mom Shines on Stage”

Creative outlets can offer cognitive benefits to people experiencing any stage of dementia, and are a great way to reduce everyday stress. Eleah Boyd writes about how theater has been a life-long passion for her mother, Dixie, but after a diagnosis of mild cognitive impairment, she declined a role in a community theater show after realizing she couldn’t memorize her lines.

Boyd was determined to find a solution for her mom to keep acting, and realized she could feed Dixie her lines through a small earpiece while she’s on stage without the audience realizing that she’s being prompted. 

“It’s as if stepping into character brings back a part of her that Alzheimer’s hasn’t taken,” Boyd writes. “These performances don’t just lift her — they lift me, and they are inspiring to others, not just because she is a fabulous performer, but because she is doing it despite her new limitations.”

Beyond artistic expression, some people with dementia also find ways to test their limits physically — redefining what’s possible after a diagnosis, like IRONMAN competitors Dan Jaworski and Scott Berkheiser.

“Navigating My 20s While Caregiving”

Eyana’s mother was 46 when she started to show unusual behaviors, like getting lost while driving to the airport that was 10 minutes away from home. After losing her job, Eyana’s mother moved with Eyana’s younger siblings to Atlanta and the behavior changes became more apparent. She was depressed, getting lost frequently, and overspending.

“When we took her to the doctor, I felt like they weren’t helping. They would just brush it off, saying that she was depressed, and prescribed more medication,” Eyana writes. “But I knew it was deeper than that. I had to really put my foot down and be that advocate for her.”

Eyana’s mother was eventually diagnosed with frontotemporal dementia, which can cause major changes in personality and behavior, and interfere with speech and language abilities. 

“I spent years comparing my life to people who didn’t have to take on this role, and feeling envious that I couldn’t do certain things,” writes Eyana of becoming a caregiver as a young adult. “But today, I’m so grateful for my journey.”

“Family Denial of a Dementia Diagnosis”

When Kitty Norton’s mother was diagnosed with mild cognitive impairment and later vascular dementia, Norton and her sister accepted this new reality and swiftly adjusted to their new normal. Norton’s father, however, was in complete denial, even as his wife’s condition progressed and she couldn’t mask her forgetfulness of names, words, and places nor hold her symptoms as a secret. 

Norton’s father isolated himself and his wife from their circle of friends and relatives, afraid of how others would view her cognitive decline and embarrassed by their new reality.

“Fighting the dementia diagnosis took so much of Dad’s energy that he had little left for Mom, and none for himself,” Norton writes. “I often wonder if he had been able to accept it sooner, would he have had time for his own health, and maybe had a few additional years with us?”

Norton writes that her father, after spending the first two years refusing to believe his wife’s diagnosis, started to attend a support group. But after a few months he was diagnosed with pancreatic cancer and died three weeks later. 

Norton reflects that the differences in how her family processed the diagnosis, and how they chose to accept it or deny it until it was too impossible to ignore, led to very different outcomes.

Norton writes: “I’m grateful that I got this right. By accepting the reality of dementia early on, my sister and I were able to connect with ‘new’ Mom so much sooner, honed an ability to adapt faster, and saved ourselves some of the heartache of fighting a disease that would eventually win in the end.”

Get in touch and share your story

VOICES is a collection of essays written by people caring for loved ones living with Alzheimer’s disease or other forms of dementia. The series shares first-hand experiences that illuminate both the challenges and moments of connection in caregiving. If you are interested in sharing your dementia care story, please reach out to lauren@beingpatient.com for details on how to contribute.