The women in Loretta Woodward Veney’s family are known for their longevity. Her grandmother died in her late 90s; her great-grandmother lived alone until she was 101, and only agreed to move into a nursing home “when we told her there were men,” Veney jokes. So when Veney’s mother was diagnosed with dementia at age 77, Veney, then 47, was shocked — and unprepared for the financial and logistical realities of caregiving.
Many millennial and Gen Z Americans will be faced with difficult decisions about elder care in the near future, if they aren’t grappling with it already. Baby boomers are reaching the age when they’re more likely to need support with medical care and daily tasks, and the ones providing that support are typically family members, often adult children. More than 40 million Americans today are caring for an older relative or friend, according to AARP, and many caregivers and former caregivers, like Veney, describe being taken by surprise when a loved one needed help, and feeling isolated by the lack of public discussion around aging and disability.
Now an author and speaker on caregiving issues, one of Veney’s biggest pieces of advice for younger people: Don’t wait for a crisis to talk to your parents or other older relatives about what they want their later years to look like — where they want to live as they age, who they want to care for them, and what steps (if any) they’ve taken to prepare. “You do not want to be making these kinds of decisions when somebody’s lying in a hospital bed,” Veney says.
It’s not always an easy conversation to have. Adult children often “don’t want to impose or catastrophize the older adult’s experience,” says Regina Koepp, a clinical geropsychologist and the founder of the Center for Mental Health & Aging. Older people, meanwhile, may worry that talking about their own future needs may unduly burden their kids. It’s difficult for most people to talk about getting older in a culture that automatically equates aging with disability — and that too often subjects people with disabilities to stigma and discrimination. We “live in a deeply ageist and ableist culture which drowns out all but the negatives about getting older,” says Ashton Applewhite, author of This Chair Rocks: A Manifesto Against Ageism. “We don’t talk about it for reasons that are human and reasons that are deeply culturally embedded.”
By cutting through the silence around aging and addressing these topics head-on, families can replace anxiety and uncertainty with a concrete plan. Older years can bring with them specific needs, such as rides to doctor’s appointments, help applying for aid programs, and even assistance with basics like bathing or eating. Discussing them can make caregiving less daunting and help make sure an older person’s wishes are respected. Below are six questions that can help you get started.
How is your living situation working for you?
Approach the conversation with respect and caring, says María P. Aranda, director of the University of Southern California’s Edward R. Roybal Institute on Aging. Older adults are “independent, and they have their own notions about how they want to live.”
Any dialogue needs to center them, their needs, and their wishes. To that end, when Aranda’s parents were getting older, she and her family asked them, “How is this living arrangement working for you?” This kind of open-ended question can start a conversation whether elders are living in their own home, with family, or somewhere else, and can open the door to talk about the future. You can follow up with questions like “Are you comfortable?” and “Are your needs being met?”
Where do you want to live if you start to need more help?
After Susan Sterner’s father was diagnosed with dementia and started becoming physically weaker, she feared her parents could no longer safely live in their home, which had no first-floor bathroom. Talking to them about moving out was mentally and emotionally wrenching, Sterner says. As an adult child, it’s difficult “to launch the conversations about the decreasing in their independence, and to have those conversations while still supporting their agency,” she says.
Having the conversation proactively, before someone is severely ill, can help family members prepare to honor a loved one’s wishes. For instance, according to one AARP survey, the majority of people over 50 want to “age in place,” staying in their homes as long as possible rather than moving into an assisted living facility or nursing home. To make that feasible, a home may need modifications like grab bars or a shower chair in the bathroom, or a lift to help someone get upstairs.
For some, however, aging in place may become impossible, often because of medical or care needs that can’t be managed at home. It’s helpful to know and consider a loved one’s preferences if that happens. Veney, for example, knew her mother “never liked people as much as I did.” So when she could no longer safely live in her home, Veney avoided larger facilities with “everybody playing bingo on Tuesday nights,” says Veney. Instead, she found her mom a small group home with six other seniors. “She loved it,” she says.
In other families, an older loved one may want or need to move in with adult children or other relatives. Multigenerational living is on the rise in the US, with 20 percent of women and 15 percent of men over 65 living in multigenerational homes. A growing number of families are even pooling their resources with an older relative and buying a home together, as Andrea Catlett did when she and her husband and kids combined households with her mother several years ago. Catlett told Vox she loves being able to share meals with so many loved ones, but also says the arrangement “takes a lot of patience and a lot of grace” — and tools like Bluetooth headphones that let her hard-of-hearing mom blast the TV without bothering the rest of the family.
Knowing if this kind of arrangement might be in your future can help you make a plan. And whether it’s modifying a home or finding another place to live, planning for the future almost always means talking about money.
What should I know about your finances?
With the median cost of a full-time home health aide reaching $60,000 in 2021, and a semi-private room in a nursing home more than $94,000, it’s crucial to ask this question to learn what financial resources your loved one has to help provide for any care they might need, and what gaps your family may need to help make up.
If your loved ones are open to sharing the information, it’s helpful to find out their net worth, whether they own any property, such as real estate, and whether they owe any debts. If you do need to manage their finances, you’ll need to know what creditors need to be paid. Veney recalls a friend who “just found out that her parents have a second mortgage on their house that she didn’t know anything about.” Having a financial conversation early on can help you avoid such surprises.
This conversation can be incredibly difficult. “It can sound very intrusive for an older person to all of a sudden have an adult child question them about money,” Koepp says. An older person may worry that a child is trying to control them or even fishing for information about an inheritance. Beyond being open and honest about why you’re bringing this up, you can also enlist a third party to help with the conversation.
Each county in the US has an area agency on aging, which often employs resource counselors who can walk families through programs they might qualify for to help with care and other expenses, Koepp says. Reaching out to such an agency together can be a way to start a conversation around finances. If your loved one has a primary care doctor, the medical practice may be able to put you in touch with a social worker who can also help discuss programs. If talking about finances directly is too challenging, “Maybe the adult child says, ‘Would you be willing to talk with a social worker about what you can afford?’” Koepp suggests.
However the conversation happens, knowing about your loved one’s financial situation is also important so you understand what you’ll be managing if you ever need to take over their affairs, either while they are living or after they die, says Eric Einhart, treasurer of the executive committee of the National Academy of Elder Law Attorneys. “Understanding the size, scope, and title of their assets certainly would be very helpful for anybody who’s going to be put in the position of potentially managing those resources at some point.”
Do you have any advance directives set up?
Advance directives are documents that set forth instructions for medical care and other personal affairs in the event that someone can no longer communicate. Without such documents, it can be very difficult for family members to make medical decisions — or even do basic things like pay bills — if an elder becomes incapacitated because of a stroke, dementia, or another condition. When Amanda Singleton’s mother became sick with brain cancer, for example, she had few advance directives in place, Singleton says. “I ran into so many brick walls trying to get things done for her.”
To avoid such situations, the following four documents are especially crucial, Einhart says:
- A power of attorney, which allows a person to name someone else who can handle their legal and financial needs if they can no longer do so themselves. Such a document could allow you to do tasks like banking, filing taxes, and picking up mail for an older relative, should they become unable to do so.
- A health care proxy, which allows one party to name another to act as their surrogate if they’re unable to make medical decisions.
- A HIPAA authorization, which allows caregivers or other designated parties to access someone’s medical records.
- A living will, which spells out a person’s wishes for the end of life, including decisions around life support.
“It is really, really important to seek the services of a qualified professional” in drafting the above documents, Einhart says. You can find a qualified attorney in your area through the National Academy of Elder Law Attorneys. Preparing the documents can cost anywhere from a few hundred to a few thousand dollars, but if that’s a financial hardship, you can also seek out pro bono legal services through your local bar association.
Figuring out when to ask older relatives about these directives and other long-term plans is “an art, not a science,” Einhart says, though he recommends people start getting their own documents in order in their 50s. He advises families to avoid starting conversations about care and end-of-life wishes right after a health incident, but instead to wait until the immediate crisis passes and remember to take a soft approach. “Reassure them that you’re not looking to take over anything,” Einhart says. “You just want to have this conversation with them because you’re concerned about the future and you love them.”
Who do you want to support you as you get older, and how?
Beyond where and how a person wants to age, there’s also the question of who will be there to help, and in what capacity. The majority of people will need some kind of support in their later years, whether that’s assistance with daily tasks like bathing or dressing, driving to doctor’s appointments or social engagements, or more involved medical care. Part of planning for the future is figuring out who’s going to provide that support.
Most elder care in America is provided by family members, and that family care needs to be planned. When Veney’s grandmother was aging, all of her grandchildren had a family meeting to discuss who was going to do what when, Veney recalls. If you’re having such a meeting, you can also include your spouse or partner, family friends, and anyone else who is going to be supporting you or your loved one. The CDC and AARP both have resources that can help with making a written care plan, which can be helpful, especially if your loved one has medical needs or if you’re coordinating with multiple caregivers.
If you think you might be a caregiver in the future, it’s also important to know what your capacities and limits are. “If you know that you are not the person who can go over and change Dad,” for example, find out if there’s another family member who can, Veney advises. “When the different care things are divided among available family members, then everybody builds to their strengths.”
However, not everyone has multiple relatives who can step in, especially in an age of smaller families. If the responsibilities of care are likely to fall solely on your shoulders, you can look to various resources for information and support. In addition to area agencies on aging, AARP and the National Alliance for Caregiving are good places to start, Aranda says.
If a loved one has the resources to hire a home health aide or another paid caregiver, it can be helpful for the family to research options together ahead of time, Veney says. In the process, family members can learn if an elder has any preferences about future caregivers, like wanting someone of the same gender or someone who speaks their language. Many families also use a combination of family caregiving and paid support; even if you and other family members provide most of the care, you can still look for assistance on a part-time or substitute basis.
What brings you joy?
Long-term care, powers of attorney, and living wills are heavy topics that can be anxiety-provoking for a lot of people. Current and former caregivers say it’s important to also make space to discuss what makes senior family members happy in their day-to-day lives.
“I’ve been really trying to ask my parents and listen hard to what are the small things that matter, that make them feel like their life is theirs,” Sterner says. “How can we help my parents feel like their life is still their life when things are getting smaller and harder?”
For Veney’s mother, that was Legos. The two had always built with the blocks together, and “when the disease progressed and she couldn’t find the words, Lego kept her calm,” Veney recalls. They brought them to doctor’s offices and used them to help Veney’s mother with behaviors related to dementia, like compulsively reading everything aloud.
Veney ultimately got trained in Lego Serious Play, a program for adults meant to encourage problem-solving and critical thinking, and today she gives Lego presentations for people with dementia, inviting them to build items on their bucket lists, among other activities. “Families are shocked by what their parents can still do,” Veney says.
It’s a reminder that older adults, like people of any age, deserve to have their wishes and best interests centered in how they live their lives. “Everyone is aging,” Applewhite says. “Let’s think about how we can support each other and inform each other’s journeys.”
Correction, October 23, 12 pm ET: A previous version of this story misstated the subtitle of Ashton Applewhite’s book This Chair Rocks: A Manifesto Against Ageism. It also misstated the median annual cost of a full-time home health aide in 2021, which was about $60,000.