Rosanne Corcoran jokes that she was “born the youngest but wired like the oldest.”
Long before her mother began showing signs of dementia, Corcoran had already stepped into the quiet role of record-keeper and planner. “I felt like if I kept track of everything, I could keep her safe,” she says. Everywhere they went, she carried a binder with color-coded tabs for medications, medical records, and legal papers. Copies of EKGs and insurance cards were tucked behind plastic sleeves, ready for emergency responders.
Based in southern Delaware, Corcoran also kept what she half-jokingly called her “get-hit-by-a-bus file”—a detailed plan to ensure her mother's care would continue seamlessly if anything happened to her. Corcoran had discussed the scenario with her husband, securing his promise that her mother could remain in their home and that professional caregivers would be brought in if needed, despite the financial challenges such an arrangement would pose.
Danielle Miura of Ripon, CA, became a caregiver in her mid 20s when her 89-year-old grandmother suffered a serious fall, requiring round-the-clock care for the next three years. As a “sandwich generation” caregiver, she juggled her grandmother's needs alongside raising her young daughter, realizing early on that caregiving required both planning and advocacy.
Drawing on her financial background, Miura educated herself about resources, insurance, and legal matters and now advises family caregivers on finance and tax planning.
“Caregiving doesn't just happen—it takes planning, advocacy, and asking for help,” Miura says. “The more prepared you are, the less chaos and guilt your family will face when the unexpected happens to either patients or caregivers.”
Before Crisis Strikes
For Corcoran and Miura, planning ahead comes easily, but that's not always the case for everyone. Experts recommend that families adopt a planning mindset to prepare for the increasing care needs of family members or in situations when the primary caregiver gets seriously sick or dies before the patient. It happens more often than many realize.
The emotional, social, and physical demands of caregiving can lead to exhaustion and chronic stress among caregivers. One study found that nearly 1 in 5 dementia caregivers die before the person they care for, underscoring how crucial it is for them to have backup plans.
“Without preparation, even the most devoted families can be caught off-guard,” says Jerome Kurent, MD, MPH, FAAN, professor of neurology and medicine at the Medical University of South Carolina in Charleston. “Advance care planning is just good medicine and an expression of love that helps avoid chaos during unplanned-for crisis situations that may require life-and-death critical decision-making.
“The opposite position that ‘my family will know what to do’ during an acute, life-changing crisis is a recipe for chaos and family dissension that should be avoided at all costs.”
Corcoran, host of “Daughterhood the Podcast,” urges others not to wait. “You don't have to be perfect,” she says, “but even a basic plan can save you and your loved one from chaos later.”
Future Living Choices
Families are often blindsided when a caregiver dies first, suddenly realizing that their assumptions about who would continue providing care—and where their loved one would live—no longer hold true. What seemed like a stable arrangement can unravel overnight, leaving families scrambling to make decisions about housing, finances, and daily support, says Farrah Daly, MD, MBA, founder of EvenBeam Neuropalliative Care in Leesburg, VA.
“In many cases, no formal care plan exists because everyone assumed the caregiver would always be there, exposing just how unprepared even the most well-intentioned families can be for such a loss,” she says.
In Dr. Daly's practice, she asks patients to describe their “storybook” vision of how they'd like the end of life to unfold—where they'd be, who would be present, and what kind of care they would have. From there, she walks families through the practicalities: What kind of home modifications or medical equipment would it take? Who would provide the hands-on care, and do they have the training or stamina to do it? How much would it cost? And if care at home is not possible, what senior living community would they want to live in?
Finding the right residential community can be life-changing for everyone involved, so plan for different situations. Start researching early so you can compare levels of care, financial arrangements, amenities, and social opportunities and get on a waiting list if necessary. Moving in while you're still healthy enough to enjoy activities and meet neighbors can make the transition smoother and help you decide if it's the right long-term fit. (CareScout offers a calculator for determining how much long-term care may cost in an area.)
Missy Krugh, a senior living consultant with Illuminate Senior Services in Columbus, OH, says it's critical to understand the levels of care a community provides, from independent living to assisted living, memory care, and skilled nursing. She recommends asking each community, “If my parents’ care needs increase, would they need to move?” She adds that asking about the costs is critical, including care costs by level of care needed, medication administration fees, and annual rate increases.
Patients and caregivers also may want to consider long-term care insurance, which can pay for someone's care when they can no longer handle daily tasks such as eating and bathing. Some insurance plan also might cover home health or community care services.
Valuable Documents
Attorney Larisa Gilbert of Louisville, KY, has both professional and personal experience with caregiving and knows the importance of planning. She supported her husband as he cared for parents with dementia and Parkinson's disease, helped her own father during his decline from pulmonary fibrosis, and now helps her 89-year-old mother, who resides in assisted living and struggles with both physical and cognitive decline.
“When you don't have the right legal documents in place, everything gets harder at the worst possible time,” Gilbert says.
She tells families that they should start planning out of a desire to preserve dignity—choosing the people they trust while they still can, instead of letting the state decide for them later.
Her advice: “Do it now, while everyone is healthy. The most loving thing that families can do for each other is to set out clear legal authority. You’ll never regret having a plan, but you will deeply regret being unprepared.”
Gilbert recommends that families work with a trusted attorney, ideally one who specializes in elder care law, to develop key legal documents to protect their loved one's estate, care plans, and end-of-life decisions. Some of these documents grant a role to a specific person, who may or may not be the caregiver, and would need to be updated should that person die or become unable to fulfill their duties.
“Good powers of attorney for financial and medical matters are the most important documents you’ll ever sign,” Gilbert says. “These documents can protect families in all cases, whether it's when someone loses capacity or the caregiver pre-deceases their care recipient.”
Here's a closer look at valuable documents to have in place:
- Last will and testament: This fundamental estate-planning tool outlines how a person's assets should be distributed and names an executor to carry out their wishes. A will only takes effect after death and does not grant authority to make financial or health care decisions while the person is alive.
- Durable power of attorney for finances: This gives a trusted person authority to manage money and property if someone becomes incapacitated. Experts warn that generic forms often fall short, leaving that person unable to handle tasks like paying bills, arranging care, or applying for benefits. When carefully drafted, it can prevent costly court interventions and ensure day-to-day and emergency financial decisions happen smoothly.
- Medical power of attorney: A medical power of attorney lets a trusted person (surrogate) make medical decisions on a person's behalf if they cannot speak for themself. Without it, doctors will default to whomever has legal authority based on state law. The role also may be called a health care proxy, although some of the terminology is state-dependent. For instance, “proxy” is used in Florida in situations where there is no dedicated surrogate decision-maker. A medical power of attorney provides flexibility to respond to changing diagnoses, new treatments, and evolving personal preferences. Having one ensures that your decision-maker can act quickly and decisively, avoiding confusion, conflict, or costly court interventions.
- Living wills: These differ from medical powers of attorney in that they provide end-of-life instructions to a chosen decisionmaker and are used when a patient cannot make decisions for themself. Living wills identify medical treatments someone would or would not want to keep them alive, such as CPR, mechanical ventilators, and feeding tubes. Patients also can note whether they want their organs, tissues, or entire body to be donated.
- Physician Orders for Life-Sustaining Treatment (POLST) form: This document translates a patient's end-of-life wishes into medical orders that health care providers must legally follow. Unlike a living will, which offers general guidance, a POLST provides specific instructions on interventions such as resuscitation, intubation, and other life-sustaining treatments. A properly executed medical power of attorney can authorize a trusted person to complete or sign a POLST if the patient is unable, ensuring that care preferences are respected across hospitals, nursing facilities, and emergency settings.
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