Inside the Caregiver’s Journey: Four Stories of Love, Loss, Resilience

Dementia experts often remind us that no two cases of dementia are alike. The same holds true for the caregivers who walk beside their loved ones on this unpredictable path. Caregiving is deeply personal, sometimes heartbreaking, often exhausting, and occasionally illuminating in ways that forever change a person. In Being Patient’s VOICES essays, caregivers share the moments that tested them, the lessons they never expected to learn, and the profound ways dementia reshaped their families and themselves.

In this collection, one daughter brings joy back into her father’s world through music and vinyl records. Another reflects on the quiet grief that comes long before a final goodbye. A mother-daughter bond endures even through violent outbursts and silence. And one caregiver channels her experience into a children’s book to help others understand Lewy body dementia.

Together, these stories remind us that while the challenges of caregiving are immense, the love at the heart of it all never disappears.

“Still My Dad”

“In his younger years, my dad was the life of the party,” Madeline Bastida writes. “He had an incredible sense of style, smooth moves on the dance floor, and a joie de vivre that naturally drew people in.”

Following her father’s diagnosis at age 67, Bastida made the decision to move her father to Washington State from Puerto Rico. In an effort to maintain a sense of comfort after her father’s life had changed dramatically, Bastida started to infuse their lives with something her father loved: music. 

“Music was everything for my father. He loved the 1970s, so I filled our home with the songs that made him light up,” writes Bastida. 

Giving her father independence through small tasks — organizing his things, helping with household chores, choosing what music to play — was important.

“To help him reconnect with his past, we got him a vinyl record player so he could play his old music on his own,” writes Bastida. “The sound of a record spinning, the act of placing the needle down on the vinyl seemed to bring back a sense of familiarity and comfort.”

“Grief Before the Loss”

Author Christy Yates, a licensed educational psychologist who sits on the board of AlzAuthors, a community of authors sharing Alzheimer’s and dementia stories and resources, can pinpoint a moment where her children showed more compassion for Yates’ parents than she was able to. 

Yates’ father, Charlie, was diagnosed with vascular dementia in 2012. Her mother, Peggy, was diagnosed with early-stage Alzheimer’s the same year. At dinner one evening, Yates realized her father’s ability to do everyday tasks, like feed himself, had diminished.

“My compassion seemed to be stuffed way down below my horror at seeing how much he had declined,” Yates writes. “I was impatient and petulant with him, like a toddler in the midst of a tantrum.”

Yates’ son’s simple remark — “Mom. Be nice.” — led Yates to reflect on what grief meant to her. 

“Grief often comes to us long before we have lost someone. We grieve for what is already lost, changes in relationships, the knowledge that we know what is ahead of us and what a loss that will be,” Yates said. “Find ways to be as gentle with yourself as you want to be with your person. Gentleness begets gentleness.”

“Mum, Don’t Be Scared”

Many people living with dementia experience personality changes. Sometimes these can be positive changes. On the other hand, many people become angry, easily agitated or withdrawn.

For Dominica Yang, caring for her mother with Alzheimer’s meant learning to navigate challenging new personality changes. “She used to be the calmest, gentlest and kindest person,” writes Yang. After the diagnosis, “She became agitated, violent and difficult.”

Yang made it a priority to make her own presence and love known, even when it wasn’t always reciprocated. Soon, her mother became more withdrawn in what Yang calls “her Alzheimer’s shell.”

“I did not give up, I let her know we were there, I touched her, I talked to her, I embraced her with the comfort of a familiar voice, smell, and touch,” Yang writes. “My mother did not always respond, acknowledge, or react. I always acted as if she heard, she knew, or she reacted.”

Over time, Yang took comfort in the familiarity of her routine with her mother. “This is what I gave to my mother, because I believed she was inside her Alzheimer’s shell, somewhere. And in turn, my mother gave to me.”

Yang recently published a book detailing conversations with her mother during her four-and-a-half year journey with Alzheimer’s.

“Let’s Talk About Lewy”

For Jennifer Randazzo’s father, what started as forgetfulness at work in his fifties later became a diagnosis of Lewy body dementia. Her father was initially misdiagnosed as having Alzheimer’s and Parkinson’s disease, but the family found a specialist who could make an accurate diagnosis. 

Those who have Lewy body dementia often experience symptoms that resemble those with Parkinson’s disease: movement issues like tremors, balance issues, limited facial expressions, decreased mobility. 

“Some days were easier than others, but every day was a battle between mind and body. For him, it was being trapped between two realities: one where his mind was slipping away, and the other where his body was failing him,” Randazzo writes.

After her father’s passing, Randazzo wrote a children’s book about a boy and his grandfather who is diagnosed with Lewy body dementia.

“I saw a need for a resource we never had — a touching tale that serves as a valuable tool for families navigating the challenges of Lewy body dementia, promoting understanding and empathy,” writes Randazzo.

Get in touch and share your story

VOICES is Being Patient’s series of essays written by people who are or have been a caregiver to a loved one living with Alzheimer’s disease or another form of dementia.

VOICES exists as a collection of caregiver stories that shed light on both the challenging realities and joyful moments of caregiving. If you are interested in sharing your dementia care story, please reach out to lauren@beingpatient.com for details on how to contribute.