Illustration: Julien Pacaud
Take My Advice
The phone rang. It was a friend calling for guidance—as friends often have since I've become what my brother calls the angel of death. Having started a blog and written a book about caring for aging parents, I'm now an expert, it seems, on what is broken about long-term care in America, which is pretty much everything.
My friend on the phone is one among many who profess to want help but who actually want to be told they don't need it. They'd rather hear that everything is fine and will likely remain that way for a long time, maybe forever.
If only I could reassure them that this were true—that their mother or father will still be playing tennis at 90, will return a stinging volley and then keel over, with no fuss or bother, maybe giddy at having won that last point.
My friend's parents live in a big house, once a gem but now gone to seed, as a home will do when its owners are too cash-strapped or infirm to maintain it. They don't want to move, he tells me. (Typical.) Readying the place for sale, even with the combined efforts of three grown children, will be onerous. (Indeed.) In its current condition, it isn't worth what they expected. (Sorry about that.)
My friend knows in broad strokes what I'm going to say. He's read everything I've written on the subject, and even agreed with it. But now he tries to silence my frank talk with uncharacteristic babbling. His father, he says, has begun asking annoying questions over and over, losing track of time, wandering aimlessly. His mother is his father's sole caretaker, and she has grown increasingly exasperated, isolated, overwhelmed. Healthwise, she is fine, my friend says—or at least, she's been fine since returning from the hospital after setting herself on fire at the stove.
"That's your definition of fine?" I ask.
So thick is the denial of death in our culture that people can ask for advice they desperately need and yet, once they receive it, manage not to hear a word. Vast numbers of us have our fingers in our ears. But trust me: Ignorance is not, in this case, bliss. What you don't know can hurt you. The longer you refuse to reckon with reality—that your parents will get older and pass away and will probably require significant assistance before they do—the more blindsided you will be when that reality lands like a ton of bricks. Or a searing stove. Or a broken hip. Or any number of events that can signal the caretaking journey has begun.
So just as you would for any other journey, you must prepare. If your parents are still well and if you haven't done so already, sit with them and begin the conversation, by turns practical and philosophical, that will help you help them in a manner that respects their wishes and eliminates as much confusion and exhaustion from your life as possible.
Start by telling them that, while it might be a long way off, there may come a time when you will need to see to their care. Tell them that in order to do so, you need to know both what they want and where things stand. Do they foresee themselves moving into a community for seniors? Where is their money, and how much do they have? What kind of insurance do they carry, and who are their doctors? Are all their important documents complete—healthcare proxy, power of attorney, standard will, and also living will—and in the right hands? Do they wish for extraordinary measures to be taken to prolong their lives? Because your parents' situation will change over time, this is a conversation you'll need to have more than once. I recommend every year.
If your parents have already begun to struggle to live independently, you must speak kindly but candidly about what you've observed, and what you believe to be the best course of action. It may be time for them to stop driving, to leave their home and move somewhere that offers assistance with daily life, or to turn over some of those routine tasks to you or another member of your family. Every set of circumstances is different, of course, but the principle is always the same: You cannot ignore the situation until it becomes a problem.
If I sound harsh, forgive me. It's just that I happen to know—to have seen—that some of the suffering people experience while caring for aging parents is preventable. Of course, however much you prepare, this will still be hard. You may find yourself burned out, emotionally and physically drained, angry, and hurt. You may think you cannot bear up to what is being asked of you. The end of this process—and I pray that for you it's many happy, healthy years in the future—will be unavoidably painful.
But in accompanying your parents through this final chapter, you will also find unexpected sweetness. You will, if you are lucky, experience occasional flashes of humor. And as you'll learn in the slides that follow, you will not be alone. Many have walked this path before you. Some have even made it their business, their life's work, to ease you down this path. (I'm one of them.) An abundance of invaluable resources are available to you.
This journey may be long, or it may be short. It may be arduous, or it may be less demanding than you fear. But when it is your turn to embark upon it, do yourself—and your parents—the kindness of going forth with open eyes. Godspeed.
— Jane Gross
Illustration: Julien Pacaud
The Way Forward
A couple years ago, my mother dropped a bombshell: She was moving out of her apartment, she announced, and into a continuing care facility.
This came as a surprise to my two sisters and me. At 88, my mother could walk circles around most 70-year-olds, drive well (if fast), and trounce all comers in Scrabble (the word for a Scottish sweetheart? jo). She took almost no medication, read without glasses, and alternated yoga with water aerobics. She Facebooked. And the only reason she'd cut back on the bike tours was a diminishing pool of able-bodied travel companions.
Mom was losing friends right and left—two funerals in one week was no rarity—and each loss cast a longer shadow. She told us she felt increasingly lonely, despite having daughters close by, and she couldn't always be bothered to eat a meal. Decisions were harder; she wanted to simplify.
She had put down a fully refundable deposit at a retirement place ten years earlier. When she activated her name on the waiting list, my sisters and I absorbed the shock and then counted ourselves lucky. We wouldn't have to police her home for trip hazards or sleep over in shifts or take on the second-job equivalents of managing bills and cleaning and meals. We'd never have to force a move. This decision was self-care on her part, but it was also a gift. She was watching out for us; she was still in charge.
For months Mom waited for an apartment to open up—which meant, we realized, waiting for an occupant to die or to be transferred into the euphemistically named Memory Care wing. In the interim, we occupied ourselves with the colossal minutiae of moving.
One afternoon Mom and I were discussing whether her beloved tea chest would fit in the one-bedroom unit she could afford. It was a thrift shop piece of no great value, but its clean lines and warm wood finish suited her completely. The question floored her, this woman who had managed to earn a master's degree at night while teaching full time and raising three children pretty much by herself. She stared at the chest blankly.
"It's just measurements, Ma," I said, hopping up to find her yardstick. Halfway to the hall closet, I got it. Oh, I thought. Oh. This move meant more than a daunting financial commitment. More than a new social life to build and dining hall to maneuver. This would be the last nest she feathered. She was choosing the place where she would die.
It was an irreversible awakening: Life is a series of beginnings and endings, and this was both. I was witnessing the start of my adventurous mother's last adventure. She's on a path that will only get rockier, and someday my sisters and I won't be able to keep her steady. At the edges of her still phenomenal physical health is a constant ebbing. She pushes the supermarket cart so she can lean on it; she sits back to watch us decorate her Christmas tree. "You need to look this over," she says to me after filling out a passport renewal application. "I'm old."
We're bracing ourselves for what's to come, comparing notes after visits, assessing everything from her driving (still good) to her appetite (so-so). "She's 90, after all," is our new refrain, our way of holding the truth in sight; of remaining alert to the constantly shifting ground; of staying mindful of the mother she is now. Oh, we say silently. Oh.
— Lise Funderburg
Illustration: Julien Pacaud
"There's a Dad In My Living Room!"
"Well, Min, how did you sleep?" asks Martha, my father's daytime caregiver. Min is short for Minnie Mouse, the nickname my dad gave me when I was 5. He and my mother were the only ones who ever called me that—until now. Meanwhile, the nighttime caregiver, Sandra, is snarling on her way out, "Why don't you ever do what I tell you?" I flinch, but then I realize she's talking to her teenager on her blinking Bluetooth. There's always tension during the morning changing of the guard because Sandra does not like people in her business.
"How are ya?" calls out my 87-year-old father, with the smile that's always charmed everyone.
Last Thanksgiving, Dad fell down our stairs and broke his hip. He then spent three months at a nursing facility, where he got pneumonia and started seeing things like teenagers skiing on roofs. My husband said, "We should bring him home—to live, not to die." And that's how my father came to occupy my living room.
He came with an entourage. His around-the-clock attendants have become part of the household, and so has his corgi, Trilby, who tussles with our two golden retrievers. Fortunately, my father, unlike his dog, is exceptionally sweet and easygoing. "Can I help?" he often asks, words I now find terrifying; his life-changing fall happened when he was—helpfully—carrying a pile of blankets upstairs.
Here's my advice to anyone considering an arrangement like mine: Be a Buddhist. Don't cling to the life you had before. I used to love mornings. In fact, it was my dad who taught me to savor good coffee and silence. Now I have to make eggs for me, my husband, and Sandra. We have to discuss whether Truvia is better than honey, whether sugar is better than Truvia. I give Martha a section of the paper, and she gives me the rundown on all the bizarre crime stories in the greater Houston area.
Then, with the efficiency of a five-star general, she gives me my to-do list: "Min, we're out of latex gloves." "Min, you need to reschedule your dad's physical therapy because it conflicts with his podiatrist appointment." She reminds me that my father wants to take a Caribbean cruise. "Soon," I tell her. "Right after hurricane season ends."
Despite feeling like the hurricane under my roof will never end, I've managed to experience some joy in all this chaos. I know the day is coming when my father won't be with us anymore, and I know how much I'll miss him. I watch as his caregivers kiss the top of his head and tuck him in, and I know I'll miss them, too.
— Mimi Swartz
Illustration: Julien Pacaud
All Together Now
As a girl playing dress-up, I always tried to channel my great-aunt Holly: fiery red lips, exotic silk scarves, gravity-defying coiffure. Holly's life was as outsize as her look. A journalist and playwright, she reported from Bangladesh and Burma on Christian relief efforts and wrote provocative musical revues; her swish apartment was always packed with thespians, writers, and theologians. When I visited her in New York City, she whisked me off to Serendipity 3 for frozen hot chocolate, then to Broadway for Peter Pan.
Holly was so delightfully eccentric that when she started answering the door in her underthings (she was 87 by then; I was 31 and working in Manhattan), I wasn't all that alarmed. Only after she began leaving her apartment late at night and subsisting on cheese puffs did my cousin Ed take her to a gerontologist, who confirmed she had Alzheimer's.
Holly never had children, but a group of younger friends and relatives quickly christened itself Holly's Committee. Together we compiled an exhaustive cache of information on her medical history, pills, account numbers, and contacts. "The Notebook" also included sections on food ("Likes grapefruit and melon. Bananas occasionally") and social life, with a reminder that she loved visiting the American Museum of Natural History.
For the Committee, caregiving was not an isolating burden, but a communal enterprise, with inside jokes ("She's inventing emergencies to keep me sequestered in her apartment") and commiseration ("She smacked the new nurse upside the head with a Vanity Fair"). For the most part, we kept Holly safe and happy—and each other sane.
A year later, when Holly's condition deteriorated, we transitioned her to an Alzheimer's facility, where nurses said she was once again "the life of the party."
As her committee's social chair, I wasn't surprised.
— Hannah Wallace
Illustration: Julien Pacaud
How to Care for Parents/In-Laws Who Did Not Even Go to Your Wedding
First, try not to hold it against them that they adamantly opposed your marriage, and in fact refused to meet their future daughter-in-law.
Then, once they're both incapacitated—once Ida is diagnosed with the kind of chronic obstructive pulmonary disease that would bring a charging rhino to its knees and Shep with the sort of dementia that causes him to ask 24 times over the course of a single lunch, "How long have I lived here, anyway?"—spend three to five years taking over their paperwork.
Track down 50 different bank accounts, some of which have balances of $127.32, at 18 different banks. Work your way through a six-inch stack of U.S. savings bonds in the safe-deposit box. Discover that Shep and Ida hold three shares of something for which they receive a check for 12 cents every quarter. Spend a year convincing two self-reliant children of the Depression to grant you power of attorney, and then on the big day, watch them refuse to go to the lawyer's office to sign the papers. Become the kind of son and daughter-in-law who threaten the elderly. Then answer ten calls a day from Shep about why he's no longer getting any paperwork in the mail.
Deal with the desolation of accompanying Shep to a dementia evaluation. Watch him fail to draw a clock face, bunching the numbers and hands together in the top left of the circle like corralled animals. Try to present a smile when he says apologetically, "I used to know how to do this."
Sell their Florida condo, despite their trepidation about the idea, and fudge for them the amount you receive. Tell them that the dealer who snorted at their "antiques" paid top dollar for the Dean Martin doll that croons "That's Amore."
Laugh when you can. Laugh when Shep looks into his lap at dinner and says, "Where'd I get these pants?" Or when he calls to tell you he can't reach his mother and brother in Connecticut, and you respond that's because they've both been dead for a while now, and he answers, "So who am I talking to down there, then?"
Figure out a way—imagine the logistics of the Normandy invasion or the Berlin airlift—to get them both to your house safely for Christmas Eve dinner. This will involve backup oxygen tanks, spare tables, and something called a cabulance, as well as hauling Ida's wheelchair (with her in it) up any number of steps and through a narrow doorway. It will involve cleaning and bandaging Shep's head wounds after he falls on the ice getting into the cabulance. It will involve wheeling Ida into the bathroom to wipe her. It will involve reminding her, once she's eaten too fast and started to choke, to breathe through her nose. This will seem beyond her. So it also will involve explaining that she should pretend she's smelling flowers. It will involve telling everyone else to keep eating while she gets the hang of that.
Strong-arm your children into a meal at their grandparents' house at least once or twice a month, even given the impossibility of coherent conversation around that dinner table, even given that the rooms smell stale and sad and the TV is at a volume that allows neighbors eight doors down to listen in. Remind your children that Shep and Ida are still their grandparents and will continue to be visited until they're not there to visit any longer.
Have your days hijacked by all the things—aides, pills, doctors' appointments—you have to organize and supervise, and, once Ida is hospitalized for ministrokes, stand by helplessly while she refuses any more diagnostic tests and checks herself out of the ER. Discover the despair you feel when, after you plead with her, "Do it for us," she refuses.
Do your best to grapple with the wedge that all this stress drives between the two of you. What daughter-in-law, previously forsaken, would want to subject herself to such a black hole of unhappiness? What son wouldn't be sad at his wife's refusal? What daughter-in-law wouldn't note that these are two people who, even when they were healthy, were expert at making themselves miserable? What son wouldn't feel as though he owed them at least his presence?
And when you're at your most self-pitying, try to remember that they were sometimes generous. Recall that Ida passed on her prized Persian lamb coat to you; that they gave you the down payment for your house; that they sent the kids motley care packages of toys grazed from Goodwill. Try to remember that you can never deliver happiness, but that you can help. Try to remember that all they're doing, finally, is all that they can. Try to remember that the same is true of you.
— Jim and Karen Shepard
Illustration: Julien Pacaud
You're Doing Fine
When a friend of mine was dying, she said something I'll never forget. "Guilt is useless," she began. "If you did something wrong, let it go. If there's something you're doing wrong now, do better. If you can't do better, forgive yourself. I want to die in peace. The last thing I need is for you to drag your guilt in here."
Being a caregiver is hard. Being a caregiver burdened by guilt is immeasurably harder. That burden affects the quality of care, which creates still more guilt, and so on, until everyone gets so miserable, they just sit around drinking.
Guilt may seem to be an uncontrollable force, the result of factors you can't change. But guilt originates with us, not our situation. It wells up from our own judgment that we've done something wrong. Guiding a loved one through the final chapter of his or her life is a task so hard it weakens your ability to see your behavior objectively. The result: lots of guilt.
To let go of the guilt you feel as a caregiver, you must be kind to yourself, and you must befriend three things many of us would prefer not to: death, our limitations, and the structures we depend upon for help.
The most crucial of these steps—acquainting yourself with death—flies in the face of our socialization. Our culture sees illness, decline, and death as evil opponents. We encourage one another to think this way. Fight cancer! Rage, rage against the dying of the light! We celebrate stories of people who remain vital, healthy, and sexy—yes, sexy!—long after most folks their age are pushing up daisies. Hooray!
Except then they die.
But only always.
By contrast, consider traditional Tibetan culture, in which children are encouraged to ponder their own demise, where the word for body can be translated as "something you leave behind," and where revered teachers like Gyalse Rinpoche advise, "If you have got to think about something, make it the uncertainty of the hour of your death." Does that upset you? Then you're at war with one of the few certainties in life.
You must also make friends with your limitations. Start by honestly assessing what you are capable of, and I don't mean in some ideal world where you're always rested and you have all the money and time you need and the sun shines upon you forever and ever. I mean be honest about what you can accomplish on a bad day, when you're tired and sad. Treat this most limited version of yourself with the kindness you'd show an overtaxed friend. Sit yourself down. Pour yourself a cup of tea. Cry.
Having a support system is also necessary. Nobody should even try to attempt this alone. So ask for help. Almost anyone can do something—bring food or flowers, stop by to visit. Be grateful for the help you receive. Be kind to the doctors, nurses, and administrators you meet. Dealing with systems that exist to support the elderly can be infuriating, so if you lose your temper, forgive yourself. But remember that it's as easy to say "Thank you" as it is to say "Screw you," and the effects are worlds apart.
Befriending what is unavoidable—mortality, your limitations—and availing yourself of whatever aid you can find may require a hefty shift in perspective. But supplanting fear with friendship can, at the very least, allow us to tolerate what we once thought intolerable. And at best, it can transform despair into peace.
— Martha Beck
Illustration: Julien Pacaud
Quick Fixes
My two teenagers are under strict instructions to honor their short, sweet time on this planet. This is no request—it's one of my few nonnegotiable orders. After all the work I've done to nudge them toward the world, I want them to charge forth unencumbered. I want them to embrace the fullest path available to them. And I'm quite sure that does not involve caring for anyone out of obligation, including me.
Minding my father these last 13 years as he succumbs to Alzheimer's disease has made me fierce about our ethical duty when it comes to end-of-life decisions. About 15 years ago, in his late 60s, my father had heart trouble. The operation, care, and pacemaker that prevented the problem from being fatal—well, they bring up some hard questions. Should he have died then? While so young and still healthy? The answer, in my mind, perhaps unbelievably, is yes. My father was a humble and gracious man, but long diseases, particularly Alzheimer's, make a tyrant out of anyone: He cannot be left alone, even for a moment, and there is no give-and-take, only constant taking. That's the way of things, and it certainly isn't his fault, but it doesn't make the situation any more pleasant. He does not remember how to buckle a seat belt, how to hold a sandwich, or that I am his daughter. I'm certain that if he'd been able to see the future, he would've wanted to die naturally, too, because caring for him has come at great cost to many. If I'm honest, I'd admit that rarely, if ever, are the few moments of connection we share worth the hours taken from my own children, from my own dreams, health, life.
Our time together has largely been spent wandering his Colorado ranch, where we spoke of his disease when he was able, lapsed into silence once he was not. Bald eagles and horses and happiness and bitterness. Now all of this has dissolved into acceptance. Our walks have made me mindful of the brevity of time—and how we ask others to use theirs.
Before my children get much older, I hope this country's conversation drastically changes. That we increasingly use phrases like natural death, refusal of medical procedures, and assisted suicide, that we say no to some life-prolonging measures and say yes to the art of dying. This is the final lesson I've learned from my father.
It's fall now, so the geese will fly over, the last hay will be cut, the horses will gallop in the cooler weather. It's been years of such cycles. I will continue to pave my way toward a good death. If it's in my power, I will do practical things: check into long-term care before I need it, make discerning decisions about lifesaving treatments, fill out forms both legal and personal. I hope to heed the prompting of my body, to go gracefully, to go young if need be, to set a good example, to set limits on my longevity.
Will I get what I want? Hard to say. One thing I know is that when I lose my resolve, I will close my eyes and think of my daughter's sparkling blue eyes and her hopes for the world; of the tilt of my son's head as he discusses philosophy and the elements of a life well lived. There, I am quite sure, I will find the necessary courage.
— Laura Pritchett
Illustration: Julien Pacaud
Everything Is Illuminated
My mother never wanted anyone to have to take care of her. "Just send me out on an ice floe," she'd say. In the five years she had non-Hodgkin's lymphoma, she went to chemo, shopped for wigs, managed her insurance bills, and still made herb-stuffed chicken nearly every week for her and my dad. Then, abruptly, her oncologist said there was nothing more they could do. Two, maybe three months, he said.
Yet within a week, she no longer had the energy to shop or cook. She would sit in a chair, holding her head, staring and thinking.
It was a Sunday when she collapsed while walking upstairs. Hospice set up a bed in the den, where a wall of windows looked onto the snow-covered yard. On Tuesday, an aide taught me how to roll her from one side to the other to change the sheets. On Wednesday, a nurse showed me how to place a syringe between her cheek and molars so the bitter-tasting morphine could drip down her throat.
I'd shared nearly everything with my mom—probably too much. She could turn the knife, but she was usually right, and she loved me no matter what. She was the person I called when I broke up with a boyfriend ("He was wet behind the ears," she said) and when my first article got published ("Mazel tov! Now keep writing"). Sometimes I called simply to hear her voice.
And now I couldn't make her better the way she'd made me better. I read her Shakespeare and Robert Burns, but she struggled to stay awake. I made ice pops out of grape juice, crushed them, and spoon-fed her the pieces, but by Friday she could no longer swallow. No matter what I did, my mother was going to die.
When I was little, after my mom had tucked me in, I'd close my eyes, hold my breath, and try to imagine death. The thought scared me so badly, I'd scream, "I don't want to die!" and run to her.
As I watched her sleep, I wondered whether I could bear being in the room when it happened. One week after her initial collapse, she slipped into unconsciousness. My sisters and I stayed up through the night, watching for the signs that the end was near: Her breathing became shallow. Her skin cold. Her extremities had gone purple. The room was silent, save the hum of the oxygen machine; early morning light filled the space. My mother was still. There was no more attempting to move her, no more coming and going. Nothing needed to be done.
"We should say the Sh'ma for her," my oldest sister said. The Sh'ma is a Hebrew prayer that is supposed to be the last thing a Jew utters before dying. Because my mom could no longer speak, we spoke it for her.
Then my sister whispered, "You're also supposed to open a window to allow the spirit to leave." My mom didn't believe in an afterlife, but we cracked open a window just in case, then repeated the Sh'ma on the off chance she'd heard us talking.
I held her hand. Her breathing became slower, like a mechanical toy whose mechanism has begun to wind down. I watched as delicate breaths caught in her mouth—an inhale, a pause, an exhale, an inhale, a longer pause, an exhale. Then nothing. I stared for several seconds before I understood that I'd just witnessed my mother's last moment on earth.
I had imagined she would say a final word. But her passing was no less profound for its silence. As I watched the woman who gave birth to me die, the unknown became known. I had the answer I'd wanted since I was a little girl: Death is a part of life.
I thought the mother I'd relied upon had left us earlier that week. I thought she'd offered all the wisdom, all the comfort, she could. But I was wrong. Even with her last breath, she still had more to give.
— Naomi Barr
