Caregiving Again? How Experience Transforms Your Next Journey

Discover ways to approach caregiving differently the next time around

Paul Wynn,

AARP

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Published July 03, 2025

Ellen and Daniel Potts in the main courtyard of Caring Days, an adult day care program where Daniel’s father once received care.

Robert Rausch

For nearly two decades, Daniel and Ellen Potts of Tuscaloosa, Alabama, have answered the call of caregiving again and again. Between them, they have provided hands-on care and emotional support for nine family members and close friends — including, today, a beloved friend from their church community who is in the moderate stages of Alzheimer’s disease.

Their journey began as kids when both of them had grandparents with Alzheimer’s disease and vascular dementia. As adults, their first intimate experience was with Daniel’s father, who was diagnosed with Alzheimer’s in 2001. At the time, Daniel was a private-practice neurologist, well versed in the clinical side of neurodegenerative diseases. But the personal impact hit him harder than he anticipated.

“Even though I worked with families affected by serious neurologic diseases, it really hit home when it was my turn to be a caregiver,” recalls Daniel, who is now with the Tuscaloosa VA Medical Center. “It shocked me how much I had to learn.”

For Daniel and Ellen, that six-year period until his father’s passing in 2007 was nothing short of transformative. As an only child, Daniel helped his mom care for his father, with help and support from Ellen. “It was a crash course in caregiving,” Ellen adds. “What we knew then and what we know now are extremely different.”

After caring for Daniel’s father, Ellen had a spark of inspiration: Why not write a practical guide for other caregivers searching for straightforward answers? Daniel loved the idea, and together, they coauthored The Pocket Guide for the Alzheimer’s Caregiver, published in 2011.

Since then, Daniel has written two more books on caregiving, including a deeply personal work about an expressive arts program that inspired his father’s watercolor paintings created during his final years, Bringing Art to Life: Reflections on Dementia and the Transforming Power of Art and Relationships.

Two possums painted by Lester Potts (Dr. Daniel Potts's father)

Robert Rausch

Lessons in caregiving

Psychologist Julia Mayer entered her second caregiving role after the death of her father from vascular dementia, helping care for her in-laws. Armed with hard-won insight from her experience, one of the most valuable shifts was in how she managed her own expectations. Early in her caregiving journey, she hoped to meet every need, solve every challenge and ensure her loved one’s safety at all times. But over time, she realized that such perfection was not only unattainable; it was unsustainable.

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While caring for the parents of her husband, psychologist Barry Jacobs, an AARP columnist and contributor, Mayer learned to expect resistance rather than be surprised or discouraged by it. Whether managing medications or preparing meals, she approached each task with the understanding that things might not go as planned. This shift in mindset helped her stay calm, adaptable and focused. Instead of trying to control every outcome, Mayer prioritized her in-laws’ quality of life and embraced the reality of doing her best amid emotionally complex circumstances. Mayer and Jacobs have collaborated again on a new book, The AARP Caregiver Answer Book, a collection of questions that others have asked them about caregiving.

“The second time around, I stopped trying to be perfect and started focusing on what actually mattered,” says Mayer. “My expectations were much more realistic, and I anticipated resistance to doing things instead of being blindsided by it.” Simple shifts made a difference: "”By putting the food on a plate in front of them, they ate much better than when I gave them choices.”

Caregiving experts agree that adopting new mindsets and practical strategies can help make future caregiving experiences not only more manageable but also more meaningful. Here are essential approaches to consider.

Get educated

After his father’s passing, Daniel Potts dove deeply into caregiving research, immersing himself in literature and joining numerous caregiver organizations and advocacy groups. Together with his wife, he found guidance in Joanne Koenig Coste’s book, Learning to Speak Alzheimer’s, which reshaped their understanding of connecting with those living with dementia.

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The adult day program where Daniel’s father spent time and discovered a passion for painting offered more than just care. The program staff became an essential source of education and support. “I remember saying to the executive director, ‘I wish you knew my dad back in the day,’” Daniel recalls. “But she gently corrected me, saying, ‘We want to know the person who walks through the door today.’”

Daniel became active with groups such as the Alzheimer’s Foundation of America and the Dementia Action Alliance, expanding both his knowledge and support network. “What began as a journey of trial and error eventually became a mission.”

Seek help

Over the course of nearly three decades of caregiving, Tom Chiodo gradually learned the importance of asking for help. Chiodo, executive producer of special projects at PBS station WETA of Washington, D.C., took on everything during his mother’s final months when he moved into his childhood home to provide hands-on, around-the-clock care as cancer spread through her body.

In his mid-30s, Chiodo saw caregiving as a deeply personal and solitary responsibility while helping his father care for his mother. But over the years, as he stepped in to support more family members, including two brothers, he gradually learned to lean on others and embrace a “team” approach.

Chiodo, co-executive producer of the new PBS documentary Caregiving, explains that long-distance caregiving for his second-oldest brother, who was suffering from spinal stenosis and arthritis, became a true team effort. Adult children, siblings, cousins and close friends all pitched in, dividing responsibilities based on individual strengths: One managed insurance, another took care of housing and finances and another handled coordination of care at the assisted living facility.

They held regular Zoom check-ins to stay on the same page and relied on one another for emotional support throughout the journey. “Accepting help is not giving up control — it’s gaining the freedom to breathe,” says Chiodo. “Sometimes the bravest thing you can do is say, ‘I need help.’”

Dr. Potts's books about Alzheimers on the coffee table.

Robert Rausch

Embrace empathy

Susanne White, founder of Caregiver Warrior, has learned to be more empathetic during her experiences caring for her parents. Her mom had dementia, and her dad had heart disease. A turning point came when she saw her mom staring at a calendar she could no longer understand, overwhelmed and afraid. “It just hit me,” White recalls. “If that were a stranger, I’d be so kind. But it was my mom, and I had to meet her in that pain.”

That moment helped White let go of old roles and expectations, and instead connect with the person her mom had become. Since then, White says empathy has become her foundation in every caregiving role: “It helps me show up with compassion, even when the situation, or the person, is difficult to deal with. Empathy gives me the strength to keep going.”

Stay in the present

For those caring for loved ones with dementia, it’s important to meet the person where they are, says Daniel. He learned the hard way with his father, when he still expected his dad to remember friends’ names or memories from the past.

Instead of trying to correct or reorient or a loved one with dementia to the current reality, caregivers should accept their world as it is in the moment. This means not dragging them back to past memories or expecting them to behave as before. “I had to learn to let go of who he was years ago and honor who he is now — building a relationship in the present, not holding him to a past standard,” says Daniel. “Most caregivers learn this with time and often become stronger the second time around.”

Loosen control

Liz O’Donnell’s third time as a caregiver, for her husband who battled pancreatic cancer, taught her the importance of mindset over control. Unlike her earlier caregiving for her parents, she learned to accept the unpredictability of care. She learned to “chill out” more, loosening her grip on details and accepting things beyond her control, unlike her first caregiving experience, when she was much more tightly wound and controlling.

“The biggest shift in caregiving is mindset: from trying to fix everything to accepting what you can’t,” says O’Donnell, author of Working Daughter: A Guide to Caring for Your Aging Parents While Making a Living. “You have to find little ways to care for yourself, even when caring for someone else feels like a full-time job.”

Discover patience

Reflecting on her current caregiving role for a church friend with Alzheimer’s disease, Ellen Potts says she has developed far more patience than she had in earlier caregiving experiences. “I know this isn’t how he would normally be,” she explains, emphasizing that she no longer takes repeated phone calls from her friend or his confused behavior personally. With years of experience — caring for nine family members, between her and her husband — she’s learned that “this isn’t our first rodeo,” and that understanding the disease helps her respond with more compassion and calm. “My prayer has always been to make the crooked straight and the rough places plain,” she says, and over time, that clarity — and peace — has come.

Don’t forget yourself

Empowered caregiving begins with self-awareness. Caregivers must learn to recognize and prioritize their own needs in order to maintain balance, comfort and emotional safety. “We cannot pour from an empty cup,” says White, author of Self-Care for Caregivers. “Tending to oneself is not indulgent — it’s necessary.”

During her husband's battle with pancreatic cancer, O'Donnell would swing by a thrift store on the way to the hospital. "I stopped there in search of vintage bracelets that cost a few dollars. Just digging for a treasure through all the jewelry was fun and a small way of treating myself."

Key tools for self-care include building a trusted community — people who will listen, offer help and ease the sense of isolation. Caregivers must also establish healthy boundaries to conserve their energy and improve communication so that everyone involved stays informed and aligned. White adds, “Most importantly, they must practice self-compassion, recognizing that being kind to oneself is not a luxury but the foundation of sustainable caregiving.”

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Paul Wynn, a veteran health care writer, has spent over a decade immersed in the caregiving community, both as a family caregiver and as a journalist covering caregiving issues for national publications.