Imagine inviting a seasoned journalist into your home to witness some of your most intimate and vulnerable moments—say, resettling your parents into a different home, likely the last one they’ll know. That’s exactly what five families did to help Paula Span illuminate the modern struggles of caring for aging parents in her new book, When the Time Comes.
Span found these families confronting a “steep learning curve,” like so many other boomers, trying to figure out appropriate care for Mom and Dad, how to pay for it, and what changes lie ahead. Facing all of that, they were happy to find someone who would listen.
Span has been there. Over a decade ago, while raising a teenage daughter, the working journalist learned her mother had metastasized uterine cancer. But before she could get treatment, her mother had a massive stroke. Span spent a month caring for her in New Jersey, learning how to crush pills, swab her mouth and turn her so she wouldn’t get bedsores. Her mother died at home in 1998.
Now, Span is trying to master the choices confronting her 86-year-old father, who still lives in his own apartment. Will he eventually be most comfortable in assisted living? When should he move? Could a sudden illness mean a nursing home will be his only choice? Span calls herself a caregiver-in-waiting who is in the “looking into the refrigerator stage—to be sure stuff isn’t rotting.”
Span felt that people would read about the difficulties of becoming your parent’s caretaker if told through stories. Along the way, Span has learned that many boomers don’t know much about caring for their parents and decided to help prepare her peers for what was coming. The result is both an informative guide and a compassionate, inspiring read.
Q. Did your book grow out of your life experience?
A. I am aging myself. You hit somewhere around your late 40s into your 50s and it’s just in the air. Everyone who used to be talking about kids is talking about parents. It’s not SATs anymore, but ADLs [activities of daily living]. I had also done a couple of stories for the Washington Post about retirement. It became clear that the wave is coming and this is the next big life-cycle event for baby boomers. Most of us have raised kids, and just when most of us are ready to retire and take it easy, we’ll be taking care of parents.
Q. You call the book a “support group in print.” What does that mean?
A. There’s not a course in how to take care of one’s parents. You don’t get a diploma. How do you find out the best thing to do for your situation? People learn a lot from each other, and the book is a way of extending that. So the reader sees what some of the issues are for a woman who is trying to help her mother stay in her house. They see how many aides she goes through, how many her mother fires, and then readers are better prepared when they go through this themselves.
Q. You have chapters on each of five types of elder care: home care, shared household situation, assisted living, nursing homes and hospice. Let’s talk about the most important advice from each. What about home care?
A. A big issue with any of these choices is what a professional would call “assessment.” Does this type of living arrangement make sense for your parent? In Shirley Grill’s story in the book, one reason it made sense for her to help her mother, Dora Appel, stay in her home was that Dora had a social network. She had a good friend nearby. She wasn’t isolated. Staying at home is the golden ideal, but isolation is the downside and people decline if they don’t have interaction.
Q. What about a shared household situation, where a parent is brought to live with a child?
A. Having a parent who is dependent and in your home is one of the more stressful ways to be a caregiver, and it’s important to know that going in. You might need help with this emotionally. Finding a therapist for you or your parent can be a lifesaver. In another story, Ilze Earner was taking care of her mother at her home as well as working as a professor with one child at home and one in college. She wasn’t sleeping well, was completely stressed out and needed a geriatric care manager. This person helped with assessment and also did counseling with Ilze and her mother.
Q. What do you think about boomers being told they’re selfish if they don’t take their elderly parent into their home?
A. I become angry. In a study by the University of Michigan, the researchers set out to look at the shift from elderly parents living with children to living independently. They found the rate was steady until after the 1940 census, when the number of elderly living with their children dropped like a ski slope. What happened? Did children stop loving their parents? No, the first Social Security checks got mailed, and as soon as the elderly could live independently, they did. So we can let ourselves off the hook, because they don’t want to be living with us, either.
Q. How is assisted living different?
A. It’s great to have this in-between option that’s always been around on a small scale. It really took off in the 1990s with Marriott and other large companies getting involved. A million people are living in assisted living situations. It’s not good at supplying health care, but it’s good at giving privacy and some degree of individual help. As a result, people tend not to stay for more than an average of 27 months. This arrangement is more likely to be a way station. You should also clarify the discharge criteria. At what point is your parent going to be too much for them and have to move? They may deal with mild dementia, but not aggressive behavior that may accompany it.
Q. Are nursing homes a difficult choice?
A. Children feel like they have failed if they take a parent to a nursing home, because no one wants to go there. This is true even though studies show that adult children stay very involved by visiting, bringing food, even doing laundry. Children should understand that there are times when nursing homes are the only appropriate place, unless you have tons of money for a day and nighttime aide—or if you have so little money that you qualify for Medicaid and your state allows those dollars to be used for home-based care. So the job is to find the best nursing home.
This is not a rational system. In fact, it hardly deserves to be called a system. It’s a patchwork of services. It’s always changing in terms of availability of services, providers of services and what they offer, costs—and if you say this is crazy, you’re right. Why do so much of Medicaid’s billions go to keeping people in nursing homes where they don’t want to be, as opposed to keeping them in their own home where they do want to be? It’s illogical and wasteful.
Q. Is hospice any better?
A. I’m a big advocate for hospice, which is not a place but a service. My mother was a hospice patient. Hospice makes it possible for very sick, elderly people to be with aides they trust. There’s not a better way to die, except for dropping dead, which rarely happens. Death from strokes and heart attacks are way down.
Q. Isn’t it hard to know when to call hospice?
A. Call them when you get a diagnosis. There’s no obligation, and Medicare pays for it. At least have a discussion. There’s a huge benefit to calling hospice early and not waiting until your parent is at death’s door. Hospice can’t do their job in four days or a week and a half. We take our parents to all kinds of specialists, and hospice is the specialist in end-of-life situations. People don’t have to die alone or in pain.
Q. What’s your most important advice overall?
A. Remember, aging is a tough passage of life. It’s distressing and hard to coordinate and expensive. We plan for education, marriage and kids, but we don’t plan for being caregivers to our parents, and we should. But people step up and do it and survive it. They get satisfaction from helping to care for the people who cared for them. There are more programs than you think, and you need someone to help you find them.
Q. What kinds of programs?
A. There are some federally funded programs to bring services to what are called NORCs, or naturally occurring retirement communities. For instance, in Philadelphia and New York City a van with a nurse will come to a building that has a large population of elderly people and provide health services on the spot. Similarly, intentional communities, driven by consumer involvement, bring the services of a retirement community to seniors in their homes. Beacon Hill Village in Boston is an example. Both are examples of trying to let seniors age in place.
Robin Gerber is the author of Barbie and Ruth, the biography of Ruth Handler, the founder of Mattel Toys and creator of Barbie.