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When Denial Gets in the Way of Long-Term Care Planning

A common refrain: If we don’t talk about it, it won’t happen

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Sooner or later, most of us will need some long-term care. That might mean help getting to appointments or cooking meals; it could mean help with bathing and dressing from a family member or a paid aide at home; it could mean months or years in an assisted living facility or nursing home.

But many of us don’t want to talk about that reality, much less plan for it.

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“A lot of people are in denial,” says clinical social worker Debra Feldman, a Chicago-based care manager who is president of the Aging Life Care Association.  

“We plan for retirement, but we don’t necessarily plan for the older adult years in an aging body,” says Jennifer Crowley, a registered nurse who is a life care planner in Kalispell, Montana, and author of Seven Steps to Long-Term Care Planning.

Denial, which can persist even after people become ill or disabled, has consequences: People don’t think about how to pay for care; they may not consider how livable their homes will be; and they may make faulty assumptions about who will care for them, planning experts say. The result can be fewer options when needs arise. “If you wait too long,” Crowley says, “decisions are more likely to become someone else’s decisions, not your own.”

Consider these recent findings:

• Someone turning age 65 in 2020 had a 70 percent chance of needing long-term care in their remaining years, according to the U.S. Department of Health and Human Services (HHS).

• The average person who needs help, at home or elsewhere, needs it for three years, but 20 percent need it for at least five years, HHS says. About one-third need nursing home care for an average of 1 year.

• The cost of such care varies widely across the United States. In 2021, the median monthly cost was $5,148 for a home health aide, $4,500 for an assisted living facility and $9,034 for a private room in a nursing home, according to a survey by Genworth.

• Despite those needs, just 18 percent of adults over 40 have looked into long-term care planning for themselves; a third have helped an older family member get information, says an AARP survey conducted in 2020.

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Uncertainty plays a big role

Denial isn’t the only reason so many people aren’t planning. Lack of information — such as the widespread misconception that Medicare covers long-term care — plays a role, says Anne Tumlinson, founder and CEO of ATI Advisory, an aging and disability research and consulting firm. So does uncertainty, she says: “Every single American faces the risk that at some point, over the course of their lifetime, they’re no longer able to take care of themselves, [but] it’s not a certainty. … That makes it really, really difficult to plan.” No one knows, she says, when or if a stroke, cancer or other crisis will strike. “You could be zip lining when you’re 80 and dead when you’re 82.”

Tumlinson, who also founded Daughterhood, a caregiver support community, uses that example because it’s exactly what happened to her father. He was zip lining, horseback riding and working at 80, she says, and was dead at 82 after a diagnosis of Parkinson’s disease and then a fast-moving, fatal blood disorder.

Her father made no plans for getting sick someday, she says, and denial did play a role. She remembers trying to talk with her parents when they were in their 70s. “I’m just like, so, you know, in 10 years, where do you see yourself? And my dad was so hostile. He said, ‘Do you think I’m going to die?’ I was like, ‘Someday, I think you probaby will.’ ” The conversation didn’t go any further, she says. Even after his diagnoses, her father, for better and worse, kept planning for years of active living, she says. At that point, she says, “there was no way we were going to have a conversation about his eventual functional decline.” As a consequence, she says, “my 82-year-old mother was stuck doing most of the caregiving. … We didn’t really have the supports and services in place soon enough.”

Avoiding the hard talks

Frank discussions about long-term care “are hard conversations that as human beings we don’t enjoy having,” says Ailene Gerhardt, a patient advocate in Brookline, Massachusetts. She says some older adults who try to start such conversations with their grown children find that it’s the kids who are in denial: “I have a lot of people say to me, ‘I want to talk about it, but my kids don’t want to talk about it.’ ”

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When adult children don’t want to talk about such subjects, it’s often because they can’t face the fact that “their parents will someday not be there,” says Joy Loverde, a Chicago eldercare consultant and author of Who Will Take Care of Me When I’m Old?

And when older adults don’t want to talk to their children, it’s often driven by “fear that they’re going to learn the truth about them not being available to them for a variety of reasons,” Loverde adds.

Solo agers — people without spouses, partners, children or other close kin — are not immune from denial but are sometimes more clear-eyed about the need to think ahead, Feldman says. They may be more acutely aware their vulnerability, she says.

Loverde says some people who think they will never be alone are in a different kind of denial: Spouses and friends die, children move away. We all need backup plans, she says.

Underlying much of the denial is a fear of losing independence and the idea that “if I don’t plan, then that’s not going to happen to me,” Feldman says.

Getting past denial to action can relieve a lot of anxiety, Crowley says: “There’s a peace of mind that comes from getting your affairs in order. … There’s never a wrong time to get started. But there’s always a right time. We can’t avoid certain adversities such as illness or injury, but we can prepare for them.”

Turning Denial Into Action

Ready to start a conversation about long-term care, for yourself or a family member, but don’t know where to start?

You can learn the basics, about services, how to pay for them and how to prepare, at the U.S. government’s website. The site includes tips for anyone, healthy or not, over age 50.

But navigating the emotional terrain of these conversations can be tricky. A few expert tips:

If talking with a reluctant family member, focus on your love and concern, says life care planner Jennifer Crowley: Say that “it would mean a lot if you could just kind of look ahead at some of these things that are worrying you.”

If a loved one still doesn’t want to talk? Ask yourself, “Am I the best person to be having this conversation?” suggests eldercare consultant Joy Loverde. Sometimes, a professional life planner, a trusted doctor or a social worker can help.

Listen to your loved one and respect their choices, even if you don’t agree, Crowley says. If you can make just a little headway, she says, focus on “the basics” — such as essential legal documents that say who will make health and financial decisions if the person becomes incapacitated.

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