Kristie Opaleski was drowning in a sea of guilt. In 2021, her parents were diagnosed with devastating illnesses; her father with leukemia and her mother with Alzheimer’s. For four years, Opaleski, then 48, found herself driving what seemed like an endless loop from her home in Howell, New Jersey, to her parents’ house 45 minutes away in East Brunswick. This was in addition to her demanding career as a high school teacher and raising a teenager.
The relentless cycle of caregiving, a role increasingly shouldered by family members across the nation, pushed Opaleski to her breaking point. She had attempted to alleviate some of the burden by hiring caregivers, but her father’s resistance led to them being repeatedly dismissed. Her pleas for her parents to sell their five-bedroom home and move into assisted living were met with her father’s staunch refusal. The situation escalated dramatically when a near-disaster occurred: her father called, complaining that her mother wasn’t making dinner, while simultaneously her mother called asking why the chicken wasn’t baking. It transpired that her mother, disoriented by her Alzheimer’s, had mistakenly turned on a stove burner instead of the oven. Due to her father’s inability to navigate the stairs to the kitchen, Opaleski had to enlist a neighbor’s help to turn off the burner, averting a potential fire.
This harrowing incident, followed by Opaleski’s emotional collapse, prompted a crucial intervention from her husband. He recognized that a significant change was necessary, and Opaleski acknowledged that it was long past time to establish boundaries. A subsequent visit to her parents led to a candid conversation. "I can’t do this anymore," she declared. "I can’t be everything to everyone." Today, both her parents, now 83, reside in assisted living facilities.
Opaleski’s story is far from unique. The common refrain to caregivers – "be sure to care for yourselves" – often rings hollow in the face of overwhelming responsibilities. Deborah J. Cohan, a professor of sociology at the University of South Carolina Beaufort and author of "Welcome to Wherever We Are: A Memoir of Family, Caregiving and Redemption," articulates the frustration many feel with simplistic advice. "Caregiving adds so many layers of stress to our lives, and then there’s this added stress of all the other things you should do for yourself," Cohan, 56, explained. She spent a significant portion of her 30s caring for her terminally ill father. "I know when I was in the throes of the caregiving process, there was a lot of that noise coming at me from well-meaning people."
The Pervasive Toll of Caregiving
The scope of family caregiving in the United States is staggering. According to the 2025 research report "Caregiving in the U.S." by the AARP and the National Alliance for Caregiving, nearly one-quarter of adults – an estimated 63 million individuals – provide ongoing care to adults or children with chronic medical conditions or disabilities. This represents a substantial 45% increase over the preceding decade, underscoring a growing societal reliance on unpaid family caregivers.
While the act of caring for loved ones can be deeply rewarding, it exacts a significant toll on caregivers’ finances, health, and overall well-being. Many are forced to leave their employment, halt their retirement savings, or incur substantial debt to meet the demands of care. The American Psychiatric Association Foundation highlights that studies consistently show caregivers experience higher levels of stress than their non-caregiving counterparts. Women, who constitute the overwhelming majority of caregivers, are particularly vulnerable to increased anxiety, depression, and a decline in physical health.
Suzanne Horton, a 48-year-old licensed mental health therapist from Tacoma, Washington, experienced this firsthand. She cared for her father, who suffered from cancer and kidney failure, from late 2019 until his passing in early 2025. "In five years, I can count on one hand how many times I truly stepped away to do something for myself," she recounted. "Part of that was lack of access to support, but a big part of it was fear about what would happen if I were not there." Her only consistent breaks were the four hours her father spent in dialysis, six days a week. Yet, even these periods offered little respite. The physical and mental strain manifested in her own health, leading to a diagnosis of sciatica. She attributes this to both the chronic tension held in her body and the physical demands of transferring her father between his wheelchair, bed, and car.
Horton echoed the sentiment of many caregivers when she stated, "People often told me not to forget to take care of myself, and in my head I would say, ‘When?’" She added that even a year after her caregiving responsibilities ended, she still finds it challenging to prioritize her own needs. "Taking care of me was one of the hardest parts."
Recognizing the Signs of Burnout and Seeking Support
Professionals in the field regularly encounter caregivers who, despite feeling overwhelmed, struggle to articulate their needs or ask for assistance. A pervasive fear of emergencies occurring in their absence, leading to enduring guilt, often paralyzes them. The subtle progression of burnout can also go unrecognized. Caregivers may become increasingly irritable and fatigued, leading to snapping at the person they are caring for, which in turn fuels more guilt.
David LoPresti, 48, experienced a lifetime immersed in caregiving. His mother lived with a lifelong disability, and it was just the two of them. "What I want non-caregivers to understand is that caregiver burnout doesn’t look like collapse – it looks like a competent person quietly making worse decisions for months," LoPresti observed. He now runs ADA Compliance Professionals, a company dedicated to ensuring digital accessibility for people with disabilities. His perspective on addressing burnout is stark: "The fix isn’t a vacation. It’s designing your life so the load is survivable."
Defining what a "survivable" caregiving situation looks like is deeply personal. However, mental health professionals, researchers, and caregivers themselves consistently point to strategies that have proven effective. A crucial first step is acknowledging that what works for one caregiver may not work for another. While friends and family often offer well-intentioned advice, it can become repetitive and frustrating, such as the common platitudes about not drinking from an empty cup or putting on one’s own oxygen mask first.
Barry Jacobs, a clinical psychologist who cared for his mother with dementia for seven years and co-authored "The AARP Caregiver Answer Book," dismisses such advice as largely ineffective. "I never say those things, I find them completely ineffective, and you’re never going to be the first person to tell someone to take care of themselves – they’ve heard it a million times," he stated. Jacobs advocates for a shift in perspective: caregivers must understand that prioritizing their own well-being directly enhances their capacity to care for their loved ones.
Many caregivers initially approach their role with the assumption that it will be temporary. However, the AARP caregiving report reveals that approximately 30% of caregivers provide assistance for five years or longer. It is often at this juncture, when the long-term nature of the commitment becomes apparent, that individuals begin to seek sustainable strategies.
Jacobs likens caregiving, especially for individuals with progressive conditions, to a marathon. "You don’t run a marathon by going all out full tilt from the moment the gun goes off and you don’t run past the water station at mile five, and say ‘no thank you, I’m not thirsty’ to people waving water bottles," he explained. "People get the idea that they have to pace and replenish themselves if they want to meet the mission. The mission is not to run halfway and drop out."
Embracing Imperfection and Sharing the Load
To make caregiving sustainable, individuals must also relinquish the pursuit of perfection. Cohan, who cared for her father in her 30s, described her experience as being "governed by the tyranny of perfection." The constant worry about making the right choices and second-guessing herself was agonizing. She realized she needed a way to "let go."
For Jacobs, this translates into the concept of the "good-enough caregiver." This involves accepting that mistakes will happen and trusting one’s instincts. While professional advice is valuable, caregivers should not hesitate to voice concerns or disagreements if they feel it goes against their better judgment regarding their loved one’s needs.
Furthermore, the notion that caregiving is a solitary responsibility must be discarded. Opaleski, the New Jersey teacher, initially felt that the burden was hers alone. However, she discovered the necessity of leaning on neighbors and extended family, actively requesting specific tasks on a regular schedule, such as having a neighbor bring groceries to her parents weekly. "I’ve had to abandon the martyr complex," she admitted.
A "Systems Failure" and the Push for Systemic Support
Donna Benton, an associate professor of gerontology at the University of Southern California and director of its Family Caregiver Resource Center, argues that caregiving has been erroneously framed as a personal failing rather than a systemic issue. "We haven’t supported caregivers as the structure of the family has changed," she stated. The demographic shifts, including smaller family sizes and increased longevity with chronic illnesses, have amplified the need for comprehensive support systems.
Benton and her colleagues have been instrumental in advocating for policies and legislation to better assist caregivers. The Caregiver Advise, Record, Enable (CARE) Act, developed by the AARP and enacted in most states, is a significant step. It mandates that hospitals record the name of family caregivers in patient medical records, notify them of impending patient discharges, and provide essential education and training on medical tasks required at home.
On a federal level, the Centers for Medicare and Medicaid Services (CMS) has taken notable actions. In 2024, Medicare Part B introduced codes that allow healthcare providers to bill for training family caregivers of Medicare beneficiaries with mental or physical health diagnoses. Research from the Center for Health Care Strategies indicates that models incorporating such training have led to reduced burnout among participating caregivers.
Simultaneously, CMS launched an ambitious eight-year pilot program, Guiding an Improved Dementia Experience (GUIDE), designed to provide coordinated care and support for Medicare enrollees with dementia and their caregivers. A key objective of the GUIDE program is to address the needs of unpaid caregivers through enhanced access to education, training, support services, and crucial resources like respite care. Information on program participation is available online.
Despite these advancements, Benton notes that many caregivers and healthcare providers remain unaware of these available resources, underscoring the critical need for education. However, the existence of such initiatives signals a growing recognition of the vital role caregivers play and the importance of government and other organizational support.
In parallel with systemic efforts, individuals can seek external resources. Geriatric care managers, now often referred to as aging life care professionals, can provide invaluable assistance. These professionals, typically with backgrounds in nursing, physical or occupational therapy, or social work, assess clients’ needs and help coordinate necessary services. The Aging Life Care Association offers a database to locate these professionals locally. Furthermore, every state possesses an agency on aging with a family caregiver support program, often an underutilized resource, accessible through state government directories and the national Eldercare Locator.
Cultivating Space for Self-Care Amidst the Demands
While systemic solutions are imperative, many caregivers find that implementing small, personal changes can make a significant difference in their daily lives. For LoPresti, whose caregiving journey began in childhood, establishing non-negotiable boundaries is paramount. This includes a firm end to caregiving tasks most evenings, designating one full day where he is unreachable by the caregiving team, and a standing rule to postpone major decisions when feeling depleted.
Horton, the therapist from Tacoma, found peace by stepping down as the primary liaison between her father and other friends and relatives. While some were initially annoyed, this decision granted her much-needed mental space. "If I could take a little off my plate, that’s what mattered," she asserted. She also rediscovered the therapeutic benefits of gardening, finding that tending to the flowers transplanted from her father’s garden offered a mental respite. "Having my hands in the dirt gave me a moment to breathe," she shared.
Opaleski, the New Jersey teacher, has found that self-care is a multifaceted endeavor. It encompasses professional therapy and anxiety medication, but also includes scheduled 20-minute "venting calls" with a friend who is sworn to simply listen without offering solutions. Her daily ritual of tea at 4:00 PM serves as "a small, hot anchor in a sea of medication logs and teenage angst."
Humor, even in the direst circumstances, can be a powerful coping mechanism. Gigi Marino, 65, has been caring for her husband for 15 years as he navigates end-stage liver disease, complicated by pancreatic cancer, diabetes, and a host of other ailments. He is currently in hospice care at their home in Orlando, with Marino and her sister providing support. "We joke about ‘death-card bingo,’ trying to guess which disease will get him first," Marino said. "Strangely, our gallows sense of humor – and just being upfront and honest about the situation – is the best stress reliever, and I believe laughing our way through dozens of hospitalizations and a handful of near-death experiences has kept him alive and going."
Experts emphasize the importance of connecting with others who understand the unique challenges of caregiving. Support groups, both in-person and online, offer a vital lifeline. These can be found through aging organizations or those dedicated to specific diseases like Alzheimer’s. Monique Frahm, a care educator with Trualta, a company offering free online sessions for caregivers facilitated by educators, highlights the profound impact of shared experience. As a registered nurse who cared for both her parents in her 20s, Frahm wishes she had access to the support she now offers. These sessions provide answers, but even when solutions aren’t readily available, the act of being heard and validated is immensely healing. "There’s going to be people in the group who say, ‘Me too, I went through this six months ago.’ Hearing ‘I’m not alone’ is so healing for people."
This article first appeared in Kiplinger Retirement Report, a monthly periodical covering key concerns of affluent older Americans who are retired or preparing for retirement.
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