The Art of Dying Well

by Katy Butler

  If you are determined to age in place and stay in your own home until you die, imagine deeper disability and plan for it. Take a test drive with a roll-aboard suitcase, from the curbside all the way to your bedroom, to uncover barriers to a wheelchair or walker. Widen doorways to thirty-five inches and remove thresholds.

  If you have the money, consider more extensive home improvements, such as bidets, walk-in showers, pull-out drawers in the kitchen, electrical outlets that don’t require bending, levers rather than doorknobs for arthritic hands, and brighter LED lighting in laundry rooms and closets so your dimmed eyes can see stains on your clothes. (As I mentioned earlier, Medicaid will not count these expenditures against you, and once you enter the program, you won’t have the money.) Renovating a downstairs bedroom and bathroom might help you to live entirely on the ground level when you have to (and only then—going up and down stairs, for as long as you can, will keep you stronger and more functional).

  An occupational therapist can also help if some activities, such as dressing on your own, have become difficult. Let go of vanity and follow their recommendations for easy-off clothing and shoes, toilet-seat raisers, tip-proof cups, and slip-proof bowls and place mats. If your range of movement is limited, a long-handled comb can let you brush your own hair, and a “grabber” can reach shelves. Video monitors enlarge book print. Hearing aids make it easier to enjoy your friends and to stay socially engaged. They’re a double win: they reduce your risk of further hearing loss, and of dementia.

  Many people who’ve developed disabilities, unfortunately, deny themselves many former pleasures because they are too embarrassed to be seen at the opera using a walker, or attending a dinner party using hearing aids. This is understandable, given our society’s shame about aging and disability, which are normal stages of later life. (Many younger people, as Ashton Applewhite puts it in This Chair Rocks, are “prejudiced against their future selves.”) Get over your embarrassment and internalized shame. Becoming adept with aids will enlarge your independence and your pleasures, and improve your quality of life.

  MAKING A MOVE

  When Doug von Koss’s San Francisco landlord died, he had to leave the rent-controlled house that had been his home for thirty years. He found a smaller rental cottage in a flatter, more walkable neighborhood on the edge of Sebastapol, a bustling market town surrounded by vineyards and apple orchards, fifty miles to the north. A son lives one town away, several close friends a decade younger than him live nearby, and he’s now much closer to stores and coffee shops, which is likely to keep him socially connected and physically active if he has to give up driving someday. If you are planning a move, look for a neighborhood friendly to nondrivers, perhaps one with good public transportation or houses or apartments closely packed together. You want to be within walking distance of a supermarket, health club, or coffee shop where you can become a “regular.” You might choose an area, or even an apartment building, where a relative or friend already lives. If the region is served by a good nonprofit health plan or high-quality HMO, so much the better.

  Consider seeking out a neighborhood that already has a “Villages” mutual aid network, or a place where you might help start one. If you can afford it, explore getting a place with an extra bedroom served by its own private bathroom, kitchenette, or entrance. All are great attractions for a future paid caregiver, a younger student lodger, or a roommate.

  If you are choosing a retirement community, I suggest you visit at least three and ask yourself the following questions:

  • Can you walk to interesting places, or do you have to be driven everywhere by van?

  • Can you “test drive” by staying a week before making a commitment that may be difficult to reverse? This is not a choice to make in a panic.

  • Can you “graduate” to skilled nursing onsite and get more help when you become too fragile for independent or assisted living? Moving can be difficult during a major health crisis.

  • What is the policy regarding minor falls? Will they send you to the emergency room whether or not you want to go? Can you negotiate an exception?

  • Is it served by a physician or nurse house call service?

  • What is the philosophy regarding the end of life? Does the staff make an effort to honor do-not-resuscitate orders and other medical directives, and make sure they travel with you to the hospital? Are staff comfortable with palliative care, hospice, and “comfort care”?

  • How does the place feel on a gut level? Some fancy places with great interior decor turn out to be bureaucratic, profit-oriented, and devoid of warmth. Some modest family-run “board and care” homes, housing a handful of older people, provide a great deal of comfort and love.

  • Will you find friends with similar interests? The Redwoods, in my liberal town, is full of artists and activists. My friend Anne’s parents, a retired general and his wife, chose a retirement home outside Washington, D.C., exclusively populated by former military people.

  • Does the place have a mission other than profit? Many well-regarded places were founded by religious groups. The excellent Kendal Homes were started by Quakers. Little Sisters of the Poor and Nazareth Homes were founded by Catholic nuns, and many retain a tender, caring feeling. The Beatitudes Campus in Phoenix, Arizona, founded by the local protestant Church of the Beatitudes, is a national leader in flexible, imaginative, noncoercive care for people with Alzheimer’s disease. Jewish Homes for the Aged are often outstanding. Masonic Homes, and others run by community nonprofits, will often let you stay on if you run out of money, helping you access charitable grants or Medicaid. All are open to people of all religions.

  PRACTICING INTERDEPENDENCE

  When disability strikes, many families are stunned to discover that Medicare pays for little to no home health aides or nursing home care, beyond rehab for a limited time after a three-day hospital admission. Unless you qualify for Medicaid, most of your help will come from volunteers, family, and friends, supplemented by a patchwork of limited services provided by local nonprofit agencies and businesses.

  This rip in the national safety net creates a strong incentive for staying as functional as you can, for hiring small amounts of help sooner rather than later, and for learning to graciously receive from people who are fond of you. It’s often wiser to pay for some services, or to accept small bits of assistance from many friends, than to tough it out until you or a single caregiver collapses.

  Now is the time to draw on the social “bank account” you created in the Resilience phase, when you mentored younger people and helped out your neighbors. The wider your network of support, the better. If someone says “Let me know how I can help,” give them one small, manageable, repeating task, like doing the laundry every Monday, or taking you out to lunch once a month. It’s better to have a dozen people pitch in a little than insist on the exclusive help of one exhausted spouse. If, when you were stronger, you did favors for others, you may now feel more comfortable asking others to do the same for you.

  Caregiving is a two-way street. Encourage your caregivers to practice compassion for themselves as well as for you. If you can afford some paid home care, give family caregivers a daily break and one day “off” per week. Or consider reducing their burdens by outsourcing some of their routine tasks. You might hire a high school student to do their grocery shopping, or drop off their dry cleaning, or drive you to your medical appointments.

  Caregiving can be one of the most exhausting and lonely roles that most of us will ever experience (and most of us, especially women, will fill it repeatedly) given that families are scattered across the country, government support is minimal, and social networks are often frayed. Caregivers experience significantly less stress when they feel they are helping effectively, and that you appreciate it. Every time someone’s presence in your life gives you joy, or the help provided allows you to keep doing something you love, say so out loud. The daily practice of gratitude, which you may have begun earlier, can have real payoff
s now.

  If one family member is shouldering most of the burden, consider paying him or her an hourly wage at the going rate, and letting other family members know about it. This can reduce future bitterness and is fairer to the one who puts in years of personal and financial sacrifice only to receive the same share of inheritance as those who did little but kibitz from afar. As mentioned earlier, such family payments will not delay your admission to Medicaid, as long as the pay is reasonable and your record-keeping is good.

  Explore resources in the wider community as well. If your town offers a good day program for older people, consider it. These programs give older people opportunities to make art, play mah jongg, sing, go on outings to movies and museums when they can no longer drive themselves, and eat lunch together. They reduce boredom and isolation, improve mood and health, and give caregivers a lifesaving respite. Enrolling someone you love, or going yourself, can feel like a blow to your dignity, I know. Even when my mother was nearly broken from nonstop caregiving, our family felt too humiliated to consign my increasingly demented father to the company of others like him. But we were defending the pride of the man he used to be, not the man he had become.

  So my poor father sat for years alone in the living room at home, dignified, bored, and lonely. He was a prisoner of our shame. He loved to paint and to write and enjoyed the company of other people. A day program could have given him those things in his radically changed circumstances. Explore what’s offered in your area, and don’t follow our bad example.

  * * *

  If you’re in a financial position to hire home help, you may be in for an unexpected boon: a surprisingly tender and close near-family relationship. Some home health aides look on their profession as a calling, and are gifted at it. The bonds they develop can be of astonishing intimacy. Honor them, if you can, by paying above minimum wage and contributing to their Social Security accounts, if they have them. (Many, however, prefer to be paid under the table.)

  If you’re comfortable with interviewing, hiring, and firing people, you may do well finding your own in-home caregivers via Craigslist or word of mouth. Home care agencies keep more than half of the hourly fee, and usually require a four-hour minimum shift. My family hired caregivers privately, because we wanted more flexible shifts. We found skillful, kind, remarkable people by paying them nearly double the going rate—and no more than we would have paid an agency. Think about what will work best for you. Don’t settle. You may cycle through several not-so-good caregivers before you find the extraordinary ones with whom you click.

  This is a complex relationship, and I recommend being realistic about human vulnerability. Give away family jewelry to heirs or remove it to a bank’s safety-deposit box. Don’t leave wallets on desks or cash in “secret” hiding places in closets and drawers.

  People with fading memories sometimes unfairly accuse paid caregivers of stealing, when they’ve simply forgotten where they put something. On the other hand, unfortunately, caregivers (and, by the way, some family members) do sometimes steal: a theft forced my husband’s eighty-seven-year-old father to fire someone he had come to depend on. It’s better to remove temptation beforehand than to find yourself continually suspicious.

  BEING AN EXAMPLE

  People who thrive while living with age- and health-related limitations have usually cultivated the virtues of adaptation, acceptance, and interdependence. You are never too old or weak to give and receive love, or to offer encouragement, reassurance, and praise to younger people. Don’t discount the power of your example. How you conduct your life now will teach those who come after you.

  The Israeli psychologist Valery Hazanov, during his training at Columbia University, learned much from the clients he worked with in New York City nursing homes. Those who did best, he noticed, were creatures of habit. One ninety-four-year-old woman whom he admired woke at 6:30 a.m. and first made her bed. Then she went for a stroll with her walker, ate breakfast, exercised in the rehabilitation room, read, ate lunch, napped, went for another walk, drank tea with a friend, ate dinner, and went to bed. Her disciplined routines gave her life structure.

  “She pushes herself to do things, some of which are very difficult for her, without asking herself why it is important to do them,” Hazanov wrote on Vox.com. “I think this is what keeps her alive—her movement, her pushing, is her life. Observing her, I have been coming to the conclusion that it might be true for all of us.”

  Along with structure and discipline, Hazanov noticed that joy and gratitude were crucial to residents’ well-being. Those who coped best with chronic physical pain, he observed, had long been passionate about something outside themselves, something they continued to do despite age, pain, and disability. They loved spending time with a grandchild, painting watercolors, singing in a choir, or mentoring others in their profession. Developing outside passions, long before they became disabled, made tolerating reduced circumstances more bearable.

  “You can’t start developing the spiritual muscle when you’re old,” Hazanov wrote. “If you didn’t really care about anything outside of yourself (like books, or sports, or your brother, or what is a moral life), you’re not going to start when you’re old and in terrible pain. Your terrible pain will be the only thing on your mind.”

  The very old taught Hazanov another spiritual skill: acceptance. One woman in her eighties, sitting by a window, told him: “Valery, one day you will be my age, God willing, and you will sit here, where I sit now, and you will look out of the window, as I do now. And you want to do that without regret and envy; you want to just look out at the world outside and be okay with not being a part of it anymore.”

  Ways to Prepare:

  • Plan financially for further disability.

  • Spread the caregiving burden beyond immediate family with hired help or friends. For local sources of help, call your county’s Agency on Aging or dial 211.

  • Ask for a referral from your primary care doctor to a physical therapist, speech therapist, or occupational therapist.

  • Do everything you can to prevent a fall. Study Pilates, yoga, qigong, or t’ai chi, or take a class in fall prevention. Stay strong and get an occupational therapist to help you eliminate hazards in your home.

  • If you haven’t already, review and reduce medications like statins, blood pressure drugs, tranquilizers, sleeping pills, sedatives, and SSRI antidepressants.

  —CHAPTER 4—

  Awareness of Mortality

  The Art of Honest Hope • Talking to Your Doctor • Understanding the Trajectory of Your Illness • Preparing the Family • Finding Allies in Palliative Care • Reflecting on What Gives Your Life Meaning • Staying in Charge • Thinking Creatively • Redefining Hope

  Perishable, It Said

  Perishable, it said on the plastic container,

  and below, in different ink,

  the date to be used by, the last teaspoon consumed.

  I found myself looking:

  now at the back of each hand,

  now inside the knees,

  now turning over each foot to look at the sole.

  Then at the leaves of the young tomato plants,

  then at the arguing jays.

  Under the wooden table and lifted stones, looking.

  Coffee cups, olives, cheeses,

  hunger, sorrow, fears—

  these too would certainly vanish, without knowing when.

  How suddenly then

  the strange happiness took me,

  like a man with strong hands and strong mouth,

  inside that hour with its perishing perfumes and clashings.

  —JANE HIRSHFIELD

  You may find this chapter helpful if you recognize yourself (or someone you care for) in some of these statements:

  • A doctor says you have a “serious” or terminal illness. This includes cancers that have reached stage four, meaning they’ve spread.

  • An organ vital to sustaining life—your heart, brain, kidneys
, lungs, or liver—is slowly failing.

  • You are in the early stages of an incurable disease that worsens over time, such as amyotrophic lateral sclerosis (Lou Gehrig’s disease, or ALS).

  • Doctors refuse to discuss your prognosis, or say your disease has a poor or dire prognosis. (Prognosis just means a forecast of your health prospects, but in medicine it’s often a euphemism for “You are approaching the end of your life.”)

  • Your doctors use terms like chronic, progressive, serious, advanced, late stage or end stage. (They mean incurable, worsening, worse yet, and approaching the end of life.)

  • Doctors want to discuss goals of care. (This is medical shorthand for exploring what matters most to you, and how medicine can help you accomplish it, when time is short and cure is not in the cards.)

  • You have a gut sense that following this medical appointment, your life will be forever divided into before and after.

  THE ART OF HONEST HOPE

  Amy Berman is a dedicated amateur artist and registered nurse who distributes health policy grants for the John A. Hartford Foundation in Manhattan. She loves to write, travel, surf, and spend time with her family, especially her grown daughter, Stephanie, with whom she shares a house in Brooklyn. One fall morning shortly after her fifty-first birthday, Amy stood in the shower and felt, on her right breast, a dimpled patch of skin the texture of orange peel and about the size of a nickel. A first round of tests revealed she had inflammatory breast cancer. Many early breast cancers are curable. But inflammatory breast cancer is a rare beast, infrequently found before it has spread.