How to Cope When Caregiving Seems Endless

Discover ways to manage the emotional and physical terrain of caregiving when there’s no clear finish line

Paul Wynn,

AARP

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Published June 11, 2026

Betsy Hicks-Russ has centered her life around her son, Joe Prohaska, who was diagnosed with autism at age two.

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Key takeaways

Endless caregiving can take many forms, from caring for multiple loved ones at the same time to moving from one caregiving role to another with little recovery time.
When caregiving is ongoing, the emotional, physical and practical demands can become overwhelming, especially without a clear sense of when relief will come.
Framing caregiving into seasons can make caring over a long period of time more manageable and less emotionally overwhelming.

For more than three decades, Betsy Hicks-Russ has organized her life around her son. At 60, while many parents her age are settling into retirement or rediscovering freedom after raising children, Hicks-Russ still structures nearly every day around the relentless physical and emotional demands of caring for her son, Joe Prohaska, 32, who was diagnosed with autism at age 2. Joe is nonspeaking, prone to meltdowns and self-injury, and dependent on others for many basic daily tasks.

Yet the rhythm of their life together is anything but ordinary. On any given week, Hicks-Russ and her son might bike 30 miles through the Pacific Northwest, hike steep mountain trails near their home in Bellingham, Washington, or ferry to the San Juan Islands for another adventurous day.

The physicality of caregiving, Hicks-Russ says, is what many people fail to understand about parents raising adults with autism with high support needs. Unlike illnesses that emerge late in life, autism caregiving can stretch across an entire lifetime, leaving aging parents to confront an unsettling reality: There may never be an end point. “These parents are scared,” says Hicks-Russ, who runs the nonprofit Autism Odyssey and hosts a parenting-focused podcast connected to The Telepathy Tapes. “Parents in their 60s are now moving into full-time care of autistic adults in their 30s.”

While admittedly tired sometimes, Hicks-Russ has adopted an attitude of endurance, resilience and movement. Her son is her “personal trainer,” the force that keeps her hiking, stretching, cycling and strong enough to continue caring for him. “If I want to be the best caregiver I can for Joe,” she says, “then the priority is taking care of my own health, because I have to be here for him over the long haul.”

Betsy and Joe ride together frequently, turning caregiving into an opportunity for exercise and fun.

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What is endless caregiving?

Endless caregiving is often described as caregiving that lasts for several years or that seems to have no end in sight, both emotionally and physically. Terms such as serial caregiving, compound caregiving, overlapping caregiving and chronic caregiving describe different but similar experiences, whether caring for multiple people at once or moving from one caregiving role to another with little time in between.

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The average duration of a caregiver’s role is five and a half years, with 14 percent providing care for five to nine years, and 15 percent with caregiving responsibilities lasting 10 years or more, according to “Caregiving in the U.S. 2025,” a joint report by AARP and the National Alliance for Caregiving.Many individuals find themselves locked in a seemingly endless cycle of care, whether it involves supporting a child with lifelong disabilities, managing multiple high-needs relatives simultaneously or moving directly from caring for a grandparent to a parent. Because this labor lacks a visible end date and leaves little to no time for personal recovery, it frequently culminates in severe caregiver fatigue and burnout, leaving caregivers feeling entirely drained, as the relentless demands of their role outpace their ability to rest and replenish.

For Diane Marie Gallant, caregiving often seems endless. Gallant, 65, initially believed caring for her mom would last about two years, based on the doctor’s prognosis of her mom’s metastatic melanoma. Instead, the caregiving has continued for nearly a decade. Her mom now lives in Gallant’s home in Lee, New Hampshire.

“In some cases, you keep thinking caregiving is temporary, so you put your own life on hold waiting for the finish line. Endless caregiving can feel like the finish line will never come,” says Gallant, a contributing author to The Caregivers Advocate Vol. 1.

Gallant describes feeling emotionally trapped and chronically depleted, explaining that she finally got relief when she hired companions for her mom. However, caregiving still crowded out much of what once defined her life outside the role: work opportunities, exercise, social connections, household responsibilities and the ability to plan for her own future. The isolation reshaped her relationships as well.

“All of my friends have changed since I’ve been a caregiver,” she says, explaining that many longtime friendships faded because she no longer had the time, energy or flexibility to maintain them. “In their place, I have built a new support system made up of people who understand the realities and unpredictability of a caregiving life.”

Caregiving after caregiving

Nancy Treaster self-identifies as a serial caregiver after caring for five family members over two decades, some with overlapping illnesses and health crises. Treaster, 64, first helped support her father, who lived with Parkinson’s disease, alongside her mother and sister.

Years later, her husband was diagnosed with frontotemporal dementia, followed by her father-in-law’s Alzheimer’s disease diagnosis just a few years later. Treaster coordinated the intensive end-of-life care her mother-in-law required when she developed lung cancer so she could remain at home until her death. During the same period, Treaster’s sister was diagnosed with a rare appendix cancer, leading Treaster to split time between Georgia and New York to support her sister’s treatment and recovery.

In 2024 alone, Treaster lost her father, her father-in-law and her husband. She says years of caregiving eventually taught her to become a “pragmatic caregiver,” focusing on the present instead of constantly fearing what comes next. Today, she channels that experience into helping other dementia caregivers through education, advocacy and support through The Caregiver’s Journey Podcast, which she cofounded with fellow caregiver Sue Ryan.

Caregiving is not over for Treaster. She remains actively involved in ensuring that her 87-year-old mother receives appropriate support while living in an older-adult community in Georgia. Her mother remains largely independent and able to manage her own personal needs, maintaining a stable routine and a modest social life within her residence. As Treaster reflects on this stage of caregiving, she admits it feels emotionally different. “After years of successive caregiving crises, I have evolved to a place where caregiving is no longer consuming my identity,” she says.

Betsy and Joe are joined by her fiancé, Ron Russ, during a ride through Birch Bay State Park in Blaine, Washington.

Sol Neelman

Coping with endless caregiving

When caregiving feels endless rather than a defined role, the emotional strain can become overwhelming and burdensome. In those moments, experts recommend moving away from simply “powering through” and toward strategies that steady the emotions. Here are four approaches that can help temper the emotional upheaval and support a steadier, more grounded caregiving experience.

Think in seasons, not forever.

Elizabeth Miller, founder of the Happy Healthy Caregiver website and podcast, dislikes the term “endless caregiving” because it feels emotionally crushing and like a permanent identity. Instead, she recommends that caregivers reflect on their role and responsibilities in each season. Even when caregiving may realistically last for years or decades, breaking it into seasons can make it psychologically more manageable.

The distinction may sound subtle, but Miller believes that it changes how caregivers process the experience. “Seasons imply movement, and it acknowledges that care needs evolve, circumstances change and families adapt, even if caregiving itself continues,” she explains.

Miller knows this terrain personally, as she has lived this reality across multiple seasons as a caregiver to several family members, including her aging parents, while raising teenagers and now advocating for her brother with developmental disabilities.

“For many caregivers, the seasons can overlap and be successive by caring for an aging parent, then a spouse and a family member,” says Miller. “Each relationship brings its own arc, its own beginning and eventual transition.”

Focus on living while caregiving.

For Hicks-Russ, one of the most important lessons of long-term caregiving is learning not to postpone life while waiting for caregiving to end, especially when there may be no clear end in sight. Raising a son with significant autism support needs for more than three decades has forced her to rethink the idea that joy, travel or personal fulfillment must wait until someday later.

Instead, she encourages caregivers to build meaningful lives within caregiving itself. That means finding adventure where possible, maintaining routines and friendships, staying physically active and creating moments of joy alongside caregiving responsibilities rather than separating the two.

“If caregiving is going to be part of my life forever, then joy has to be part of it too,” she says.

Avoid isolation and build connections.

Mary Palafox, of Santa Ana, California, says one of the most detrimental dynamics in long-term caregiving is isolation. Families caring for someone with severe mental illness often withdraw from friends, extended relatives and even their communities because of stigma, exhaustion or fear of judgment. Over time, she says, that isolation compounds the emotional strain and leaves caregivers feeling trapped inside a crisis no one else understands.

After more than two decades caring for her son, Nathan, 42, with schizophrenia, Palafox, 72, believes peer support is not optional — it is an essential survival tool for caregivers facing years or even decades of uncertainty. She encourages parents to actively seek out support groups, connect with other mothers and build relationships with people who understand psychosis firsthand.

For many caregivers, she says, simply hearing “me too” from another parent can relieve an enormous emotional burden. Those relationships provide practical advice, validation, crisis guidance and a place where caregivers do not have to constantly explain or defend their loved one’s behavior.

“Don’t do it alone,” Palafox says. “One of the biggest mistakes families make is trying to carry this privately. You need other people who understand the reality of it, because isolation will break you down.”

Break the stress loop through calming moments.

Rather than relying on structured coping programs or formal interventions, Gallant says that one way to survive long-term caregiving is to find small, repeatable acts that interrupt stress before it escalates into overwhelm. “Caregivers cannot resolve the strain of caring for others, but we can control how we balance our emotions and find the right outlet for them.”

She turns to simple anchors: time outdoors, brief pauses for breath and intentional attention to the present moment. Nature, she suggests, functions as a kind of cognitive reset, pulling her out of medical decision-making loops and back into sensory awareness. Breathing becomes a quick physiological tool to downshift when she feels tension rise, while presence helps her avoid spiraling into anticipatory anxiety about what may come next. “I can be exquisitely present in nature, and that brings me back into my body and out of the stress loop.”

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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.