VOICES: What Caregivers Learn About Acceptance and Identity

Caregivers are sometimes left to discover who their loved one is becoming in the face of a new diagnosis, and who they are themselves outside of the caregiving role. 

In four recent VOICES essays, caregivers explore the personal growth that came from stepping into a challenging role, from learning how to accept the good, to channeling their own grief into a supportive online community.

“What We’re Saying to Each Other Before the Words Are Gone”

Shasta Nelson and her husband Greg, who is in the early stages of Alzheimer’s disease, have the time to do something many couples navigating an Alzheimer’s diagnosis don’t always have the time to do, have real conversations about what their future looks like.

“We’ve always valued meaningful conversation in our 20+ years of marriage,” Nelson writes. “But nothing quite prepares you for the intimacy that arises when one of you has a degenerative brain disease. In a strange and sacred way, this diagnosis cracked us open.”

The couple have read countless books about different couples’ Alzheimer’s journeys and had heartfelt conversations with their friends and family while trying to make a plan for the realities of their future together as Greg’s cognitive decline worsens.

“So if you’re in this early stage too — if you’ve just gotten the news and don’t quite know what to do next — I want to offer this: talk….Because right now, you still can. And someday, when the conversations fade, I think we’ll be so grateful we had them.”

“Dementia Didn’t End My Life — It Changed It”

Diane Chew’s life changed dramatically when her husband, Ben, had episodes where he couldn’t remember who Chew was and became aggressive. A year after these episodes began, and after multiple nights of Chew being forced out of the home for her safety, Ben was diagnosed with Lewy body dementia.

Chew’s journey as a caregiver challenged her to learn to willingly feel uncomfortable emotions and adapt to unpredictability.

“Like many people of my generation, I was conditioned early on to suppress feelings that were uncomfortable or inconvenient — fear, grief, anxiety,” writes Chew. “As the family breadwinner in a demanding corporate career, I coped by staying busy and seeking relief through activity, achievement, and intensity…I escaped discomfort by staying in motion.”

Chew’s caregiving journey prompted her to want to share her unfiltered experience on social media. “I muddled my way through my first post with no plan, no strategy, and no idea what I was doing — either as a caregiver or online. I shared from where I actually was: confused, grieving, frightened, and searching for meaning,” Chew writes. 

To her surprise, others were quick to chime in.

“Within three months, something remarkable happened,” she recalled. “A community formed around that honesty. Other caregivers began sharing their stories….In a season when I had felt profoundly alone, connection emerged organically.”

“The Lesson My Dad Gave Me Twice”

Throughout Rachael Martinez’ life, her father had always offered an invitation to see things in a positive way: “Accept the good.”

After her father was diagnosed with fronotemporal dementia at age 50, Martinez found herself bracing for impact. She struggled with a mix of challenging days when her dad’s behavior and personality were unrecognizable, and calm days when the two would sit peacefully and things almost seemed normal. On those peaceful days, she found herself waiting for the bad ones to creep in.

“I understood then what he had been trying to teach me all along. Accepting the good was never about ignoring pain. It was about letting joy exist without immediately trying to protect yourself from losing it,” writes Martinez. “I stopped rushing past the good days. I stopped narrating them away. When my dad smiled, I smiled back fully. When we laughed, I didn’t tell myself it was temporary — I let it be real.”

Martinez encourages other caregivers to be present and enjoy the joyful moments: “When something good shows up — connection, laughter, peace — pause. Breathe. Let yourself have it.”

“Grace in the Hallways”

Lauren Hauter didn’t have a village to help care for her mother, at least not in the sense most people think of. She didn’t have siblings or extended family, causing her to rely closely on the professionals working at her mother’s memory care center. 

Hauter and her son, Jack, formed a strong bond with the people working at the care center, where Hauter’s mother passed away on Christmas.

“They knew my name before I learned all theirs. They knew Jack and always had a snack ready,” Hauter writes. “They hugged me as I left that night because they knew how important it was for me to spend Christmas morning with my son.”

The people working in a care facility — doctors, nurses, aides, cooks, and maintenance staff — and the care they deliver sometimes goes unnoticed. Hauter encourages people to thank them and remember that they have families of their own that they are caring for, and struggles they are silently navigating outside of their work.

“It’s easy to forget that we don’t always know the staff as well as we should. We see the staff in passing, exchange quick updates, and go about our day,” Hauter writes. “But behind every uniform is a person, someone who carries the emotional weight of caring for people they grow to love.”

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.