I hover expectantly over Ellen, and she looks up from her iPad, her eyes shiny. The device is a birthday present she asked my husband, Harry, and me to get for her six months earlier, and I’m glad we did so that she can now distract herself with old “M*A*S*H” episodes. “I’m lucky you were my mother-in-law,” I blurt. She doesn’t blanch at my referring to her in the past tense; we both know that, in light of her imminent kidney failure, she won’t be my mother-in-law much longer.
“My children all picked wonderful life partners,” she replies evenly, and smiles. It’s a nice sentiment, though after nearly 30 years of being her daughter-in-law, I want to hear something more personal, a reminder of what we meant to each other that I can play over in my mind when she’s gone. But it’s crowded in my third-floor guest room, with Harry and Jennifer, Ellen’s home health aide, looking on, and it feels too awkward to prompt her any further. From her perspective, this is not the time to get mired in sentimentality. Things are working out according to her plans.
Ellen is dying the way she lived: actively, with a lot of input. At 86, like so many of her contemporaries, she suffers from multiple maladies: a slow-growing leukemia called CLL; a recent mini-stroke; spinal stenosis that pains her legs and numbs her hands; recurring bouts of intestinal distress that leave her dehydrated and housebound. The ailments are awful and life-disrupting, but none of them are finishing her off. She doesn’t want to acclimate herself to wheelchairs, live-in aides and other affronts to her independent self-image. What she wants is to not treat her symptoms, to voluntarily stop eating and drinking, and to die.
While her pronouncement that she’s “had a good run” has left Harry and me sidelined with shock, our eldest son, Ted, understands. A graduating fourth-year medical student in Boston, he has often relayed horror stories about the hospital patients whose bodies are kept alive long after their occupants have experienced any pleasure in them. He’s very close to his grandmother, and for years she’s been telling him how she doesn’t want to die encumbered by lines and tubes, the way his late grandfather Paul did.
Ted finds Ellen an excellent palliative-care doctor near her New Jersey retirement community who consults with the two of them for hours, making sure the patient isn’t suffering from a temporary, treatable depression. The doctor conference-calls with Harry and his two siblings, and they affirm that they all want what she wants. The Do Not Resuscitate and more detailed Physician Orders for Life-Sustaining Treatment forms are filled out and displayed prominently on her dining room table. Jennifer, who has experience in these situations, is available, and she can be at Ellen’s side 24/7. Everything is in place.
Then, a complication: Ellen’s independent living community prohibits outside aides from working there. For my mother-in-law to die in a hotel or apartment rented for the occasion is unthinkable to me. Harry and I are empty-nesters, with a third-floor suite that’s quiet and private. It makes sense that she should die in the guest room above our bedroom.
Except . . . I don’t embrace Ellen’s plan. It’s not the agenda that surprises me; I’ve been hearing tales of family stoicism for decades. About her father, who, loathing the prospect of old age, ignored his doctor’s advice and pursued his adventure travels until he fell into a Tanzanian tiger pit and had a fatal heart attack, weeks before his 70th birthday. About the serial hardships that tempered Ellen’s steely character — a sibling’s early death, the family’s flight from the Nazis across Europe, the torpedoing of her cross-Atlantic convoy. Her stiff German parents threatened to cut her off if she married a man of Russian peasant stock, but she did it anyway. The message has always been clear: Ellen doesn’t get mad at fate, she gets even.
What I don’t understand, why I have such a powerful case of cognitive dissonance, is her timing. Her retirement-home friends always remark on how she holds court in the dining hall after meals. Neat stacks of the Economist top her end table. She goes on field trips to museums, sees movies before I do. Surely she wants to stick around to see more graduations, or at least to find out what happens with the whole Donald Trump thing.
For perspective, I talk to friends who are grappling with their own elderly parents’ futures. One can’t get his frail mother to leave her solitary farm upstate. Another tells me that his mother saved up pills for years, vowing to use them before dementia struck, but like the heroine of “Still Alice” — everyone mentions “Still Alice” — she waited too long. It seems that even among those who say they want to choose the time of their own deaths, follow-through is rare. The life force is just too strong.
I suggest to Ellen that she has more good-enough years left in her, but I succeed only in irritating her. “Maybe if I’d been more of a complainer, she would understand,” she proceeds to complain to Ted. Possibly this is true. My family of origin vents lustily and often. And when it comes to quality vs. quantity of life, the Schweichs, I joke, are like the de-limbed Black Knight in “Monty Python and the Holy Grail,” who taunts his rival by declaring that being reduced to a stump is “only a flesh wound.” We don’t define ourselves by our physicality; I wasn’t raised summiting peaks and slogging through canyons for fun, the way my husband was. I slow for shoe stores, while Ellen has never cared about possessions and, when fielding gift requests, usually asks for computer parts.
But I love that she’s hungry to know about world affairs, the latest technology, elder-care reform and, most of all, her grandchildren, whose lives are intertwined with hers. I love her, and I’m not ready for her to leave us, not yet.
Yet I know that loving her doesn’t mean agreeing with her; it means respecting her, and her wishes. And so it is that three days before New Year’s, my brother-in-law, Ira, picks her up at her retirement home and delivers her to our home 20 minutes from hers. When she walks through our front door, it’s without trepidation.
For the first three days of her final visit, Ellen receives family members and takes occasional sips of water and bites of crackers — a good idea, the doctor tells us, because hard-liners often give up. Harry reminds her that she can change her mind at any point and we’d be happy, but, to no one’s surprise, she doesn’t.
She becomes delirious after four days, when her kidneys, deprived of the ability to flush out toxins, start to fail. The first hospice worker arrives the next afternoon to find Ellen moaning as if she’s in constant pain. She needs a longer-lasting analgesic than the liquid morphine on hand, and the drugstore with the hospital-grade painkiller is closed until the next morning. It’s hard to watch her suffer, but pointless to second-guess. I think of her as a bungee jumper who made a leap of faith; now that she’s this far into her trajectory, there can be no going back.
Monday brings the continuous relief of a fentanyl patch, and Ellen slips into a deep coma. We stroke her arms, and I hold her hand, light as air because there’s no resistance. Her stomach rises and falls with ragged, then intermittent breaths. And around dinnertime on the eighth day . . . they stop.
A week later, as Harry attends to a mound of paperwork, he finds a letter Ellen wrote to her children after Paul’s death 18 years earlier. While the memory of his passing is still a fresh wound, she lays out her “fear of living as a diminished person” and her hope that they will give her “the gift of a dignified, peaceful end.”
I know that our definitions of “diminished” weren’t the same, but when she recognized it in herself, her sense of purpose was clear. Helping her reach this goal isn’t necessarily the gift I would choose to give her, but it’s the one she wanted to receive, and that’s what matters most.