How Family Caregivers Are Shaping Their Own Future

Applying hard-learned lessons from caring for others, nearly half of caregivers are planning their own legal, financial and medical futures

Paul Wynn,

AARP

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Published February 18, 2026

With her children, Rob and Jennifer, by her side, Helen Medsger (center) is making thoughtful, long-term plans to ensure her family's future is organized.

Ian Bates

Helen Bundy Medsger spent three decades caring for multiple family members, including her parents and sister, an experience that shaped both her advocacy and her determination to plan ahead so her two children don’t inherit the challenges she faced as a caregiver.

Medsger, 70, was already familiar with caregiving as a young girl after her mother sustained a brain injury, but the most defining chapter began years later, when her father developed Lewy body dementia. His rapid decline, marked by hallucinations, paranoia and eventual psychiatric hospitalization, thrust Medsger into crisis caregiving without legal authority in place. With no medical or financial power of attorney, she faced repeated barriers from hospitals, banks and long-term care facilities, while also navigating unsafe and inappropriate institutional care. The experience ultimately forced her to leave a demanding full-time position, juggle care for her parents and advocate fiercely to protect her father.

Several years after her father passed away in 1996, Medsger again became a caregiver when her sister, Maureen, also showed signs of Lewy body dementia, the third--most-common form of progressive dementia. This time, Medsger took on the caregiver role with even more intention and preparation. Drawing on tough lessons, she ensured that advance directives, physician orders for life-sustaining treatment (POLST form) and disease-specific planning were completed early, with involvement from clinicians and family members. That contrast, between reactive crisis management with her father and proactive planning with her sister, cemented Medsger’s conviction that legal, medical and financial preparation must begin long before a diagnosis or an emergency.

As she looks ahead to her own future with her husband, Ralph, 82, Medsger has taken deliberate steps to reduce the burden on her daughter and son. She has organized her legal and medical documents, revisits them regularly, speaks openly with her family about decision-making. While some questions, such as housing and end-of-life care, are still evolving, Medsger is clear about her guiding principle: Her children should never have to fight systems, scramble for control or relive the chaos she endured.

“I’ve seen what happens when there’s no plan. I don’t want my children making decisions in a crisis the way I had to,” says Medsger, a Lewy body dementia support group facilitator in the San Francisco Bay Area. “Planning ahead is one of the most significant gifts I can give my family.”

four people posing for a picture on a couch

Ralph and Helen Medsger speak openly about their future plans with their children. Helen says: "Planning ahead is the last act of caregiving I can offer my family."

Ian Bates

Future planning is gaining ground

Medsger and thousands of other caregivers are making progress in planning their own futures, even as significant gaps remain, according to Caregiving in the US 2025 , from AARP and the National Alliance for Caregiving. The report found that 47 percent of caregivers have begun long-term planning for their own care, up from 42 percent a decade ago, suggesting growing awareness of the personal toll and long-term risks associated with caregiving.

The report also underscores a striking disconnect: While caregivers are increasingly planning for themselves, many have not done so for the people they support. More than one-third (38 percent) say no comprehensive plans exist for managing their care recipients’ finances, health care decisions or living arrangements, and another 19 percent are unsure whether such plans are in place.

“Taken together, the findings point to an area ripe for intervention — one where better planning could ease stress, reduce crisis decision-making and strengthen support for the millions of family caregivers who provide billions of hours of unpaid care each year,” says Selena Caldera, senior strategic policy adviser at the AARP Public Policy Institute. “When future care isn’t planned, caregivers are forced into crisis decisions that too often drain their own savings to cover costs that could have been anticipated.”

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Estate planning and elder law attorney Larisa Gilbert, drawing on both professional and personal caregiving experience, understands the importance of planning ahead. She supported her husband as he cared for two parents with overlapping dementias and Parkinson’s, helped her own father during his decline from pulmonary fibrosis, a rare lung disease, and is now helping her 90-year-old mother, who is in assisted living, struggling with both physical and cognitive decline.

“I see this pattern repeatedly, both in my professional work and from my own caregiving experience,” Gilbert says. “Caregivers are overwhelmed. The focus is always on the person that they are caring for, and there just aren’t enough hours in the day”

Plan ahead to avoid a crisis

Without clear legal plans in place, families are forced to make the hardest decisions under the most stressful circumstances, adds Gilbert. “In the worst cases, it ends in guardianship, in which the court is forced to step in and take over care decisions.”

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Karen Maurer, a financial planner in St. Louis at Krilogy, notes that many families underestimate the cost of long-term care. She emphasizes that it’s critical that caregivers and their families understand the true cost trajectory, from independent living to assisted living to full care, and stress-test assets against those scenarios.

Maurer also recommends that caregiving experiences should prompt caregivers to put protections in place for themselves, such as long-term care insurance, annuities with care benefits or other risk-mitigation tools tailored to their situation. Just as important is communication, encouraging caregivers to have candid conversations with their own adult children. “The goal is not to disclose how much money is in the bank but to provide reassurance and clarity about roles, and reinforce their confidence that plans are in place,” says Maurer.

Caring for her mother for 20 years taught Jennifer Fink, 59, of Sacramento, that one of greatest burdens on families often comes not from disease itself but from denial and lack of planning. Watching her mother refuse to acknowledge cognitive decline or discuss future care forced Fink into crisis-driven decisions she knew her mother would not have wanted, including finding quality memory care facilities. As a result, Fink, host of Fading Memories Podcast, has become deeply intentional about future care planning by ensuring legal, financial and medical contingencies are addressed early so her family is not left guessing or fighting systems during moments of stress.

She has translated those lessons into concrete actions by placing assets in a trust, explicitly discussing dementia scenarios with legal counsel and beginning open conversations with her daughter about caregiving realities and limitations. Fink has organized most of her banking, credit card and computer password information into one document. Unlike her parents, who assumed the family would “figure it out,” Fink recognizes that unspoken expectations are unfair and destabilizing.

“I want to protect my daughter from the emotional, logistical and financial strain that I experienced as a caregiver,” says Fink. “My grandmother was a poor planner, and so was my mother, but that legacy ends with me, and I’m taking responsibility now so the next generation won’t have to later.”

Keep revisiting your plans

Advance directives, wills and medical powers of attorney should be treated not as one-time paperwork exercises but as living documents that evolve as life, health and circumstances change, advises Gilbert. “These are not static checklists completed once and filed away,” she says.

Laurel Wittman, immediate past president of the Well Spouse Association, agrees and cautions that many people complete these forms based on abstract or outdated images of medical care, which is why they need to be revisited.

Wittman and her husband, Eddie Lopes, who has lived with multiple sclerosis for three decades and is now a quadriplegic requiring round-the-clock care, completed his medical directive years ago. At the time, the question of whether he would want to be placed on a ventilator was answered based on a narrow, hospital-based scenario, being confined to an ICU bed, unable to communicate and with little quality of life.

In her husband’s case, choices about ventilation were made years earlier based on a hospital scenario that no longer matched today’s reality, where home-based ventilatory support is feasible and far less disruptive than originally imagined. Her husband now lives at home with a tracheostomy, cared for by Wittman and paid caregivers, and could use a portable ventilator at home with relatively minimal disruption.

“In a nursing home or hospital, the same intervention would have felt intolerable, but at home it represents a manageable and dignified extension of life,” says Wittman. “So we have updated his advance directive to reflect this new circumstance.”

Because of this, she argues that advance directives should be revisited at regular intervals and at key transition points: after major health changes, following significant caregiving experiences, or as new care models become available. The goal is not to undermine the importance of planning but to ensure that these documents remain aligned with current realities, values and options. In Wittman’s view, good planning is iterative, allowing for flexibility, reassessment and course correction as circumstances and the care landscape change.

Maurer emphasizes that the worst time to make financial decisions is during emotional upheaval. Grief and stress impair judgment. That's why plans need to be in place before a crisis — covering everything from estate documents and beneficiaries to passwords and realistic “what-if” care scenarios — so families can focus on caregiving and grieving rather than scrambling to make high-stakes financial choices. “When the planning is done in advance, families have the clarity and space to care for one another instead of making critical money decisions in the middle of a crisis,” adds Maurer.

6 Steps to Take Control of Your Future

For caregivers looking to plan their own futures, financial planner Karen Maurer recommends adopting this advice:

Start early: Begin legal, medical and financial planning well before a crisis occurs.
Treat documents as living instruments: Regularly review advance directives, trusts, wills, physician orders for life-sustaining treatment (POLSTs) and powers of attorney for financial and medical matters.
Include the family: Have open and transparent conversations to reduce confusion, ambiguity and potential conflict later, before cognitive decline could compromise decision-making.
Consult professionals: Attorneys, financial planners and care consultants can guide decisions, particularly for complex estates or overlapping care needs.
Organize your life: Help your family understand where critical information is stored so it can be accessed quickly in an emergency. Be sure key family members — especially those with power of attorney responsibilities — know whether documents are kept in a safe-deposit box, in a file cabinet, on a computer drive or in the cloud.
Align planning with values: Ensure that medical choices, housing options and financial arrangements reflect personal preferences and goals.

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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.