Stepping Into a Parent’s Shoes: Caregivers’ Voices on Role Reversal

When dementia alters the balance between parent and child, caregiving can come with an unexpected exchange of roles. Adult children may find themselves guiding, protecting, and making decisions once handled by their parents — a shift that can bring meaning, confusion and heartache.

In these four essays from Being Patient’s VOICES series, caregivers describe what this role reversal looks like in everyday life — how small choices can preserve dignity, how lessons learned through caregiving can shape their own parenting, and how love and responsibility intertwine when families navigate the uncertainties of dementia together.

11 Lessons From Mom About Becoming a Mother Myself

Jenni Engel was in the midst of adopting her first child when her mother, Donna, was diagnosed with Alzheimer’s at age 59. Engel’s caregiving of her mother coincided with her early years of becoming a mother herself. Her essay explores how caring for her mother prepared her for motherhood.

“A lot of who I am today — and how I mother — is because of my mother and my journey with her through Alzheimer’s,” Engel writes.

Through 11 short lessons, Engel describes her philosophy for caregiving and motherhood, sharing wisdom like, “Be a detective. Advocate as needed,” and “Grief and joy are a part of your story.”

A photographer, Engel shares her story through a series of powerful images that accompany her essay.

What My Mother’s Alzheimer’s Taught Me About Motherhood

Following her college graduation, Lauren Flake, then just 22, became a caregiver to her mother who was diagnosed with early-onset Alzheimer’s.

From having to move up her wedding date due to her mother’s health to making the difficult decision to move her mother into a nursing home, Flake faced many unexpected challenges. A self-proclaimed and recovering “perfectionist,” Flake writes that witnessing her mother’s decline taught her to relinquish control and that it even “prepared [me] for the beautiful mess that is motherhood.”

“The last diaper that I changed before I had my own babies was my mother’s. I remember being angry about the situation, ”Flake writes. “I grieved our role reversal in that moment.” 

Flake reflects how caregiving has helped her become a better mother to her two middle-school aged daughters.

“Not being able to ‘fix’ my mother’s illness and behavior as a family caregiver helped me learn to accept (and expect) imperfections in my children,” she writes. “It taught me to always try to meet my kids where they are instead of constantly trying to perfect their behavior.”

The Small Caregiving Choices That Made a Big Difference

When Jessica Buhler’s father, Edward, was diagnosed with frontotemporal dementia and ALS, a key challenge was finding small ways to preserve her father’s independence while keeping him safe.

After it became unsafe for Edward to drive, he often demanded his keys and couldn’t understand why she had taken them away.

“Not really knowing what to do, I thought to print a mock driving test, which his caregiver administered under the guise of being from the state,” Buhler writes. “While he answered every question about operating the vehicle correctly, for the rules of the road, he did not get one right. Referring to this test, and having it printed out to show him, helped us provide an explanation for why he could no longer drive.”

As dementia progresses, caregivers often face challenges in maintaining their parent’s independence while ensuring safety. Even small acts — such as helping a loved one choose their clothes or assist with chores — can help preserve autonomy and dignity.

“I discovered small ways to honor who my father was. For instance, my dad was always a generous man who loved paying in cash,” writes Buhler. “So, I arranged for him to be the one to withdraw money (thousands of dollars in cash) weekly from an ATM to pay his caregivers directly. Though this may be seen as risky, it gave him a sense of purpose and autonomy.”

In Dementia Care, There’s No Right Answer

Heather King writes about how caregiving, and the choices that inevitably must be made, are never black and white. King decided to quit her job and become the primary caregiver to her father, who was living with Leukemia, and her mother, who had dementia — a role she maintained for 10 years. 

“It is all-consuming, emotionally, physically, spiritually, and psychologically,” King writes of the experience. “Every moment is a dance, no matter how uncoordinated you are, and you must keep going – for their safety, to meet basic needs, for dear life.”

Like so many caregivers, King and her sister struggled with the decision whether to move their mother into a care facility or to hire in-home professionals (ultimately deciding the latter).

“Dementia is an impossible disease, and so are the decisions around it…Almost two years after my mother’s death, I look back with different eyes and see it all clearly,” King writes. “There was no wrong answer. In the end, when we say goodbye to our loved ones, all that matters is that we did the best we could with what we knew at the time.”

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.