Gene Hackman was one of my favorite actors. I adored him in The Birdcage. It deeply saddens me to think about how he and his wife, Betsy Arakawa, passed away. For the past 20 years I have owned and operated a home care agency, assisting hundreds of families who are navigating aging, including dementia. What happened to Gene and Betsy felt painfully familiar and painfully preventable.

The Weight of “Doing It All”

According to the media, Betsy was Gene’s sole caregiver as his dementia progressed. Anyone who has been a caregiver for someone with dementia knows how isolating and overwhelming that can be.

Who is caring for the caregiver? Who suggests the caregiver see a doctor if fatigue turns into shortness of breath? Who takes care of the person with dementia when the caregiver is sick?

In Betsy and Gene’s case, no one checked on Betsy for about two weeks. By the time anyone realized something was wrong, it was too late for both of them.

Planning Makes the Difference

Caregiving crises rarely hinge on just one episode. They usually unfold over months, sometimes years. It’s not about assigning blame. Together, we can take simple steps to make a change. Proactive planning and open conversation can help:

• Start the conversation early. Before dementia is advanced, you can discuss, record, and revisit important values and preferences.
• Document the wishes of the person with dementia. What do they consider to be a “good day” or a “good life” as the dementia progresses? When would they want more help? How might they consider the needs of the person or people who support them?
• Document the caregiver’s wishes. How much hands-on care are they willing or able to provide? What boundaries does the caregiver need for their own health?

• Think about “Plan B.” Don’t assume that the person with dementia (or the older partner) will die first. Think about what will happen if the caregiver goes first or is otherwise unable to provide care. Who steps in to provide care — an adult child, professional guardian, care manager, or paid caregiver? Who is familiar with the routine? What will happen to any shared financial responsibilities or property?

• Choose the right decisionmakers. Think about who would be a good fit for a health care proxy and for power of attorney. Family members, trusted professionals, advisors, or friends are potential options.

These conversations don’t eliminate heartache, but they can keep a crisis from becoming a catastrophe. The Conversation Project’s Conversation Starter Guides are excellent places to begin.

Support Reduces Risk

Reaching out for support can make a big difference. The local Area Agency on Aging and the Alzheimer’s Association have resources and services to support caregivers.

If you’re a caregiver, integrating help — whether that’s a neighbor dropping by, a support group, or part- or full-time home-care assistance — can make a difference for both you and the person you care for. It can help you:

• Schedule your own medical appointments without fear of leaving the person alone
• Gain another set of eyes to notice changes in the person’s health or routine
• Share the emotional load, reducing isolation and burnout

You might add a layer of protection through check-ins. A quick daily text or call to someone can be part of the routine. Make a plan for how they will follow up in a timely fashion if they don’t receive the expected message. Another option is technology. Ambient motion sensors can detect irregular patterns — like an absence of regular movement in the kitchen or bathroom, doors not opening, and so on. Then, the sensors send alerts to a designated contact.

When support is in place before an emergency, the people on your “team” already know your routine and what is important to you and the person you care for. That eases the way to step up in a crisis.

Confronting Stigma and Silence

Dementia stigma often keeps families behind closed doors, but people living with dementia, and their exhausted caregivers, are everywhere: in checkout lines, banks, and restaurants. As a volunteer with Dementia Friendly Dallas, I see how small acts of awareness can change outcomes. If the veterinarian, pharmacist, or security guard had recognized Betsy’s exhaustion and illness, maybe someone would have checked in sooner. No matter who you are, by checking in on those around you, you can make a difference.

Gene and Betsy’s story is tragic, but it is not unique. Many families face similar crises every day. It’s so important to normalize conversations about wishes for care through the end of life, talk about “Plan B” and what ifs, and connect with support in the community.

Talking about the future won’t stop dementia and it won’t stop death, but together, we can help reduce the chance of a preventable tragedy. Let’s get the conversation going.

Laurie Miller is the founder and Administrator of Apple Care and Companion, a Dallas home care agency she launched in 2006. A hands-on owner, Laurie helps older adults and their families navigate care, providing personal care, companionship, and guidance.

She holds a BBA in Marketing from The University of Texas McCombs School of Business and a master’s in Gerontology from Eastern Illinois University.

Laurie is past President of the Dallas Area Gerontological Society (DAGS), founder of Conversation Ready NTX, and creator of AgeTechNow.com, a consumer resource for aging tech solutions. She also volunteers with Dementia Friendly Dallas.