The Art of Dying Well

by Katy Butler

  She felt a soft bump against the right side of her car. She thought she’d hit an animal. She stopped, got out, and tried to find it. She couldn’t. Shaken, she drove the rest of the way home at a crawl.

  That night she called both daughters, one of whom lived fifty miles to the north and the other in rural New Mexico. It was time, they said, to stop driving. If Bronni had lived in another, more walkable time or place—a Greek island village, perhaps, or a large home shared with extended family, or even the apartment in Brooklyn where she’d grown up—this ultimatum would not have been so devastating.

  But suburbs are cruel and poorly designed places for single people of modest means growing increasingly disabled with age. Her house was just beyond walking distance from her office, the grocery store, and the community pool where she water-walked three times a week. There was no local bus service to speak of. Stopping driving, she knew, would drastically reconfigure her life.

  Bronni was long divorced. In addition to losing her sight, she was coping with diabetes and painfully arthritic feet. She wore two hearing aids and, even with their help, had increasing trouble using the phone. She took comfort from her long-term meditation group, where almost everyone was older and struggling with health problems. “Our bodies,” she told me simply, “are failing us.”

  She knew that if she couldn’t get to her office she would have to retire. If she didn’t get to the pool, she might grow weaker, more disabled, and depressed. If she couldn’t shop for groceries . . . well, that was obvious. The daughter who lived in New Mexico invited Bronni to move there. But the idea of giving up her home, her calling, her neighborhood, her meditation group, and her friends didn’t fill Bronni with joy.

  She put her home on the market, gave her car keys to the daughter who lived closest, gave the dining room table to her other daughter, and put a lifetime of possessions in storage. She planned to use the money to rent a one-bedroom apartment in The Redwoods, a retirement community near the center of town. The Redwoods had van service, social workers, a dining hall, and a garden with raised beds. It was close to a park and across the street from a supermarket. When Bronni needed more help, she could “graduate” to one of its assisted living units or to full-on nursing care. But the apartment was miniscule, and the rent alone would be more than $40,000 a year.

  Bronni’s house sold in a week. At the eleventh hour, she decided against The Redwoods and instead accepted an invitation to share a two-bedroom apartment, on a ridge in the next town, with a woman from her meditation group. Her new living situation was rich in social networks. Her housemate, Julie, was eighty-five, in good health, and still drove a car. Julie’s two grown children lived nearby; her son was a contractor who helped out with minor home repairs. Bronni’s share of the rent was a third of the cost of the retirement home. She opted for preserving more autonomy, patching together an informal support network, and using the money she saved to hire help when she needed it.

  * * *

  She reconfigured her life not by magically becoming less disabled, but by enriching her connections and expanding her sense of “family.” A crucial piece of the puzzle was joining Marin Villages, part of a national alliance of older people determined to age in place in their own homes. Modeled on the pioneering Beacon Hill Village, founded in Boston in 2001, Marin Villages is one of more than a hundred similar groups. This rapidly growing movement aims to make neighborhoods more livable for late old age by building networks of mutual support and providing referrals to volunteers and paid professionals like carpenters, home health aides, and housekeepers.

  Once she paid her dues of $365 a year, volunteers from Marin Villages gave Bronni rides to the pool, her office, and the grocery store. Someone came over and changed overhead lightbulbs that neither she nor her housemate could safely reach. Another volunteer helped her install new software on her laptop.

  Her life is an assemblage of makeshift solutions and compromises. She depends on hired hands and the kindness of friends and strangers. When she can’t get a ride from a volunteer, she pays for a taxi, a community paratransit van, or Uber, which she calls by phoning an intermediary agency called “GoGo Grandparent.” (She has a flip-phone and can’t hail Uber on her own.)

  Yes, these are imperfect and impermanent arrangements. Many solutions in this health stage are. But her patchwork of help has transformed what could have been a crippling, autonomy-destroying disability into a major inconvenience. Bronni is still working, cooking her own meals, and doing her water-walking. A downward spiral of isolation, passivity, and inactivity—the likely course had she become homebound in her old house—has been delayed.

  Adaptation has had its price. Selling her cherished home, with its lifetime of memories and its magnificent view, was wrenching. Its new owners plan to demolish it and replace it with something grander. One day not long after signing the escrow papers, Bronni got a ride to her old house, looked in the windows, and cried—saying a private goodbye to a beloved place is now a common rite of passage. “I miss my house desperately,” she said. “I talk to it. I had the stuff of a lifetime there—the rocks and stones, the old posters.

  “My housemate is kind. But now I’m in her apartment. It’s very different from being in my own space.” Maintaining her serenity requires managing lowered expectations, accepting the imperfect, giving herself permission to grieve, and letting go of what once was and is no more. By necessity, she is learning to practice a virtue that the old ascetic and stoic religions called “renunciation”: releasing worldly things, or at least accepting that they go away by themselves.

  All this has forced Bronni to rethink the basis of her self-respect. “I was the one that helped, not the one that asked,” she said. “I had to give up hating to ask for help.” Every morning she lies in bed and reckons with the distance between what she used to do and what she can do now. “I need to do everything more slowly,” she said. “I always prioritize the most important thing to do that day. I’m not guided by ‘shoulds’ but what I know is the truth. I tell the truth, no matter how inconvenient, no matter how opposed to the image I’d like to project. I try to be generous and kind with myself. And some priorities never get done.”

  Disability sometimes arrives suddenly in the form of a stroke, and more often comes on little cat feet, as an accumulation of small impairments. Continuing to shape a good life rests largely on adapting to change, abandoning shame, and accepting help.

  Consider reducing your faith in drugs, surgery, and specialists, and increasing your faith in human community and plain common sense.

  The right kind of medical care can help. The focus turns away from chasing diagnoses with top specialists and toward modest, practical, so-called ancillary health care workers—social workers, physical therapists, and occupational therapists. All can significantly improve your function and quality of daily life. They are less likely to ask “what’s the matter with you?” and more likely to ask “what matters to you?” Their goal is not to have you running marathons. It’s to keep you doing things that give your life joy. It’s to slow impairment and to find substitutes for activities you can no longer do in old ways.

  You’re also likely to need practical support from others: a family member; a handyman; a Meals on Wheels volunteer; and paid assistance. Adjusting isn’t easy in a culture that worships an extreme, impractical ideal of independence. One of the spiritual tasks of this health stage is to dismantle this one-sided belief.

  Human beings are herd animals. We give and receive help throughout our lives. You may find, to your surprise, that some of those who help you regard it as an honor, a calling, or a chance to deepen intimacy. You may find yourself forced to cultivate old-fashioned virtues, like humility, graciousness, persistence, and flexibility. Older people who’ve learned to treat other people decently, no matter what their social status, will have an easier time navigating this drastic psychic reorganization. Masters of the Universe who’ve relied on money or prestige to bend others to their will are like
ly to have a harder time. Unless you’re very rich, the more you can plan for, ask for, and accept help graciously, the happier—and ironically, the more functionally independent—you are going to be.

  MAPPING THE FUTURE AND MAKING PLANS

  The unfortunate thing about the life stage of Adaptation is that the “new normal” is likely to keep shifting, usually in the direction of further loss of physical and mental powers. Hoping for the best is fine, but if deepening disability is in your future, this is the time to plan—financially, practically, and medically—for the worst. One of the most useful things your doctor can do is to give you a clear sense of your overall health trajectory. If your eyesight is failing, knowing how rapidly blindness is advancing, and how bad it’s likely to get, can help you decide when to go for rehabilitation training. (Almost all forms of rehabilitation are more effective when undertaken while you still retain some function.) If you have memory loss, knowing how fast it is moving might motivate you to update your estate plan, to sign new health directives limiting life-prolonging medical care, or to start researching assisted living or a nursing home. Some people, to their surprise, find life in disability sweeter than they expected. Others have the opposite response.

  Armed with a clearer vision of the future, you can make practical changes in a timely manner, rather than waiting for a crisis to force change upon you. Kelcy Allwein, a Defense Department analyst who’s now sixty-six, developed a rare form of glaucoma in 2013 and underwent surgery. Given that she’s single and is likely to be blind for some years before she dies, she matter-of-factly anticipates a series of downsizings, first from her three-bedroom house to an apartment, and from there to assisted living and eventually to hospice care. This practical letting-go has become a private rite of passage. Over the past five years, using a spreadsheet, she’s sent her costume jewelry to a charity thrift shop and gotten rid of duplicate dishes and furniture that no longer suit her taste. A library of more than seven hundred religious and inspirational books went to a military chaplain to use or give to others.

  She had collected a myriad of china coffee cups as mementos of her travels. Before she let them go, she took photographs and made an album. “Because I’ve let go of things, I have space to form new memories now,” she said. “I am also thinking about putting together audio stories of who I was and who I am becoming in case my eyes get worse. I don’t look at it as a kind of death, but as rebirth and renewal—a shedding of old skin for something new.

  * * *

  This is also the time to take a look at your financial plans, especially if your resources are limited. More than a third of baby boomers have less than $50,000 saved for retirement. Forty percent will eventually need practical help for two to five years. Given that residential assisted living can easily cost $100,000 a year, people with less than half a million dollars in savings or home equity, and without long-term care insurance, should organize their finances with an eye to accessing public benefits like Medicaid. Do this at least five years before you think you’ll need help.

  Medicaid pays for nursing homes for people who’ve exhausted most of their assets, and provides home health aides and some excellent community support programs. To qualify, you must have a limited income and $2,000 or less in savings, though you may own a house and a car. When you apply, Medicaid will look back at five years of your financial records to prevent you from hiding or transferring assets to appear poorer than you are.

  Prepaying for a cemetery plot, or substantially upgrading your house to adapt it to your disability, or paying an adult child or other relative the going rate to help care for you, are all legitimate transfers in the eyes of Medicaid. But buying your son a Jaguar as a gift is not, nor is giving your daughter an early share of an expected inheritance. If you’re married, almost all of your spouse’s assets must be “spent down” before Medicaid will qualify you, even if you have a prenuptial agreement to keep your finances separate.

  The rules are tricky, and you run a serious risk of leaving your surviving spouse with little money for his or her most vulnerable years. If you think you or your spouse may need Medicaid someday, I recommend reading How to Protect Your Family’s Assets from Devastating Nursing Home Costs: Medicaid Secrets by elder law attorney K. Gabriel Heiser now. It won’t answer all your questions, but it does address such arcane matters as how to structure an annuity to avoid impoverishing the surviving spouse. Because rules vary by state, you should also consult a local lawyer specializing in “elder law,” with specific expertise in Medicaid.

  FINDING ALLIES IN OCCUPATIONAL AND PHYSICAL THERAPY

  In Adaptation, you may find your life hopes shifting. Many people and their families now choose to concentrate less on lengthening life, and more on quality-of-life goals, such as delaying physical and cognitive decline; staying out of a nursing home; and creating a life of renewed pleasures, however limited.

  The longer you stay active and well socialized, the happier, healthier, and more functional you will be. Ask for referrals to physical, speech, or occupational therapy at every opportunity. Keep doing at least a half an hour of something physical, and hopefully enjoyable, every day, even if it’s just trundling to the end of the driveway with a walker or doing stretch-band exercises in a chair.

  Perhaps the most important goal is maintaining your ability to get in and out of a chair. (People who can’t usually end up in nursing homes.) Seek regular physical therapy to help you preserve this crucial capacity. Medicare once cut off payments for PT when you stopped showing improvement, but a court settlement now requires it to cover as much as you need to maintain your current level of functioning. (Medicare will, however, require additional paperwork to cover more than twenty sessions per year.) If you must pay out of pocket, do so if you can afford it. Or try following along with an exercise class on TV, a video, or Jane Fonda’s gentle exercise routines for older people, available on YouTube. One resourceful woman I know brought herself back from a debilitating illness (at the age of 104) by doing Royal Canadian Air Force exercises in bed.

  If and when you give up one activity, substitute another. Lois Lieberman, a retired mapmaker for the city of Los Angeles, now ninety-five, ran her first marathon at the age of sixty-nine. After she injured her knee in her early seventies, she shifted to Jazzercise, Pilates, and t’ai chi. “You just have to keep going,” she said. “Small fears, you’ve got to fight them. It’s okay to feel sorry for yourself for a short period of time. Then give yourself a hug and go for it. It can be done.”

  After cataract surgery, she lost her sense of balance. For the first few months, she couldn’t even walk with a cane. “I stopped moving,” she said. “And then other things started to go.” She now exercises on a stair stepper inside her home while holding on to the backs of chairs placed on either side. So far, she’s recovered her ability to walk with a cane and hopes for more. “I hope I’m slowly getting back,” she said. “In the meantime, I’ve had a good run.”

  DISASTER-PROOFING DAILY LIFE

  One of the cheapest, easiest, most effective ways to preserve your independence is to reduce your risk of falling. A sailor in a small boat knows that a carelessly coiled line can lead to an entangled foot, a ripped sail, or being thrown overboard. The bumpy seas of late old age also require meticulous hazard reduction. Respect your increased fragility and eliminate every seemingly trivial element that increases your risk. Start with the interior of your own body. If you’ve been tottering, falling, or nearly falling, shore up your balance and stability. Many people improve their lower-body strength, ankle flexibility, and balance with practices like Pilates, yoga, or t’ai chi. People over the age of seventy who do t’ai chi are half as likely to fall as others their age, and when they do fall, they’re half as likely to break a bone. Teachers of this flowing martial art now have studios across the country. An effective alternative, offered by many community groups and health systems, are “fall prevention” classes. Take one.

  Aging bodies regulate temperature poor
ly, and dehydration and overheating can cause dizziness and lead to falling. During heat waves, drink lots of water, go to an air-conditioned movie or tie a wet bandanna around your neck—it’s an astonishingly effective form of personal air-conditioning. If you don’t see well and need cataract surgery, get it—dim eyesight is a fall risk.

  Now check your body’s immediate exterior. Give up progressive lenses, as they make it hard to judge uneven ground. Shoes with unstable heels and slippery or flapping soles are no longer inconveniences; they’re hazards, so get them fixed. (And throw out high heels if you haven’t already.) Finally, look at your home and its surroundings. Ask your primary care doctor to write a referral for an occupational therapist to assess your house for fall hazards and recommend ways to fix them.

  An occupational therapist is likely to recommend that you fix tipped pavers on pathways and install handrails on your porch stairs. Add motion-sensors and brighter lights to the driveway, walkway, and decks. Clear flowerpots from outer stairways. Make first and last steps easier to see, with a contrasting color of paint.

  Inside the house, an OT will also suggest you get rid of slippery throw rugs or anchor them with a nonslip pad or rug tape. Add grab bars wherever you can. Install brighter lights to interior stairways and halls, with additional switches or motion sensors. Remove clutter from floors, keeping a sharp eye out for magazines, extension cords, and cardboard boxes that are easy to trip over. If you have fallen when rushing to the bathroom at night, add a commode by the bed.