The Sister Pact

Three women confronting a family history of dementia make an unusual promise to one another. Will they have the nerve to see it through? 

By Lee Woodruff
illustration of sisters
Photograph: Illustration by Brian Cronin

My two sisters and I are driving to a family reunion when he calls. It’s serendipitous. We’d been trading phone messages for two weeks, and now, at the moment he finally catches up with me, we are all three of us in the car.

“This is a theoretical conversation, right?” my physician friend says over the speakerphone. “You are doing research for a novel?”

“Yes,” I reply. And my sisters and I nod knowingly to one another. The subject is taboo, fraught with tension. None of us wants to leave fingerprints. We don’t want to explore websites, write away for information or hold discussions in a doctor’s office. Now, to be extra careful, I am lying to my friend. I’m not researching a novel. I’m gathering information, planning for a disaster that could befall any or all of us.

We three sisters have made a pact, and we are one another’s best shot at carrying it out. In our case, blood is thicker than other ties, or at least more committed. Blood will ensure it gets done right.

Sibling relationships come in all forms of function and dysfunction, and in that regard I am extremely lucky. For me, my sisters are my bones, my best friends and confidantes. We have the kind of rapport that enables us to finish one another’s sentences and speak in a shorthand that goes back to childhood. I know when one of them is lying or being brave for my benefit, and I can detect the whisper of a hesitation in a tone over the phone. With just a look or a stray expression, we can parse a hidden meaning or savor an inside joke.

But right now we aren’t laughing. For the past several years, the three of us have joined forces on our most daunting task yet: navigating our parents’ end-of-life issues. As witnesses to our father’s advancing Alzheimer’s and the weight of that burden on our mother’s fragile health, we’ve put our heads together in endless conversations. We’ve combined wisdom, divvied up duties. And while watching it all go down before our eyes like a slow-motion car accident, we’ve decided to formulate our own exit strategy.

Like the witches around the cauldron in Macbeth, my sisters and I plan to accomplish what our other loved ones may ultimately find impossible to do for us. If we are robbed of dignity, comfort and the will to live, we aim to deliver one another from a prolonged and tortured ending. This is a deed that will most likely be too weighty for our children, too clouded by love and nostalgic memories for our husbands. So we have vowed to be there for one another. We just hope we will have the fortitude, the wisdom and the benevolence to see it through.

If existence should someday become unbearable, how can we end our own, or our sister’s, suffering? The man on the phone is about to tell us.

As girls and then young women, Nancy, Megan and I spent long, lazy hours on our family’s Adirondack dock each summer, dipping our legs into the lake as we talked. We’d huddle over every subject, the way sisters do: boyfriends, crushes, the utter cluelessness of our parents, a friend’s little slight, the bigger heartbreaks. Now we talk about our menopausal selves and our husbands’ habits; celebrity scandals; and our semi-adult children. We trade stories on how to set limits with our teens, find second careers and deal with empty nests. The  topic we return to most often, picking it over like the carcass of a rotisserie chicken, is our elderly mother and father.

Like most families, ours has a lot of skeletons in its genetic closet. Cancer, heart disease, depression. But most frightening by far is that my sisters and I are the fourth generation standing in line to lose our minds. Alzheimer’s, dementia, senility . . . whatever the exact diagnosis, the result is the same: the slow ebbing, the agonizing erasure of a human being.

We are all three healthy eaters. We’re nonsmokers, not big drinkers. We exercise and wear sunscreen, get regular checkups. We juice and take vitamins and add fiber to our diets. Ironically, the healthier we have lived, the harder it may be to die. We may still be able to do sit-ups in our golden years, but will we be able to string together a sentence? The fate of our family is to watch one another’s mental capacities slowly dwindle as we steal life from everyone around us like a collapsing sinkhole.

Years ago, our dad was vocal about what he didn’t want. “Don’t ever let me go that way,” he’d tell us, referring to his mother and mother-in-law, both languishing in nursing homes. “I’ll just head behind the garage with a shotgun.” It was the dinner-party bravado of a man in the prime of life, imagining there is some expiration date on each of us that beeps when it’s time to exit. What he proposed was a Hemingway move, big and loud and messy, and none of us for a second imagined he would pull it off. Nor that we, his daughters, could ever do it for him.

And so today my father is with us, but only in a half-life stage. I can hold his hand and tie his shoes, button his shirt and take him on a walk, but the essence of him, my real father, no longer resides in his beautifully preserved body. Each time I see him, it takes me a moment to re-register his condition. This present reality requires a painful recalibration of my heart, and I approach him with shifting sensations of devotion, horror and profound sadness.

There was a late-’80s movie called Weekend at Bernie’s in which two  hapless chuckleheads try to pass off their dead employer as a living man. They dress him up, put hats on him, stuff him into cars and restaurant booths. The movie was so stupid, so slapstick, that I remember it still. Yet it corresponds eerily to the way my father is living now. The people at his memory-care unit, as they call the wing at his assisted-living facility, are kind and helpful. There are daily activities like baking and sing-alongs. But this isn’t living, that vacant and hollow expression in his eyes, the inability to recognize faces and the loopy, weird arm wave he gives that scares little kids.

It was over the past year, when my father’s mental acuity really slipped, that our sister pact crystallized. We’d watched our parents do everything right—preparing living wills and advance directives and moving into a senior-living facility that would care for them until the bitter end. They checked the boxes on the important decisions. Once it came time for us to step up and play a role, however, we began to absorb the challenges of dealing with decreased cognition. It’s easier to think about what you’d do with the more clear-cut medical issues: the stroke that leaves a loved one brain-dead; the extreme, gnawing pain of cancer at the end stages. Those situations typically have a certain and hastening end, while the slow diminishment of cognitive disease does not. And my parents had no rip cord, no tacit understanding or agreement that would allow one to help the other should they stray beyond their idea of living.

“I’m not doing it,” I told my siblings as we glided around Nancy’s kitchen one day, preparing for a family BBQ. “I’m not going down lingering on death row like Dad.” We had experienced the standard agonizing stages with my father: taking away his keys, fiddling with the medication, visiting doctors, interviewing aides who could fill the bill. The day we finally took him to the facility’s memory-care unit, separating him from our mother, he was so lost, weepy and confused, it was like watching a swan that cannot find its mate. But caring for my father day to day had taken a toll on our mom. The task was too daunting. It was our Sophie’s Choice.

“We need a plan,” said Megan. “We need to figure out how to exit before it gets too horrible for ourselves and everyone around us. And we’re probably the most qualified people to help one another.”

“When either of you guys says it’s time for you to go, I know you’ll mean it,” Nancy joked with a raised eyebrow. “What we need to do is get specific. It’s so complicated.”

“Could you do it?” I asked them. “Could you really help me go through with it?”

We sized one another up with fresh eyes before nodding in unison.

As the car zips across the George Washington Bridge, my doctor friend gets to the heart of the matter, the information I have asked him to provide. We all lean intently toward the speakerphone. “If I were going to take my life, this is what I would do,” he says, then proceeds to outline an easy way: Combine sleeping pills and alcohol and slip away painlessly. “Lots of pills but no more than two drinks,” he cautions. “You don’t want to induce vomiting.” The simplicity of this plan and our collective mental picture silences us for a few beats as we search one another’s faces. Yes. We can do this.

Nonetheless, this pact of ours is daunting. How do we determine when, exactly, it is time? What tests would we administer to one another? We all three agree that the inability to understand where we are, to feed or toilet ourselves or to be more than a physical shell is a starting point. Butwhat is the tipping point? Perhaps in the face of multiple diminishments and dispiriting setbacks, it will be as simple as the morning I no longer look forward to that first cup of coffee. Even though we’ve talked through all these benchmarks, can we make that decision for our own sisters? Can we make it for ourselves?

Certainly we recognize that nothing is fail-proof. There is no guarantee that we will actually be able to carry out our desires in the end. What if we change our minds? Survival is a basic human instinct. It’s human nature to want to reach for one more day, one more hug or sunset or holiday together around a big table. What if only one of us is left? Who will help her, and how will it feel to know that you have been there for your sisters but neither of them is left to ease your way?

Perhaps, in the end, all our talk and planning will be lost in the sea of good intention. There is a chance we may be separated from one another in later years, on opposite coasts or living with our grown children, plucked out of our sisterly orbit. Maybe we’ll each be blessed enough to die peacefully in our sleep, or perhaps a heart attack or physical disease will fell us first. I cannot now help thinking of those ways to die as luxuries.

But two wonderful gifts have grown out of our sister pact. First, we are having the conversation, talking about the end in ways that are healthy, realistic and achievable. This exchange has been so much easier than I expected. Refreshing even, after all the years of not talking honestly with my father about what was happening to him, in an effort to preserve his dignity. Second, and perhaps more important, my sisters and I are more conscious of time passing, of the need to make the effort to congregate, to laugh and dredge up the old stories that keep us connected and devoted.

“If I’m lucky, I’ve got 20 good years left,” I’ll say routinely. “That means I’m going to really prioritize how I spend them.” This shocks most people, who’ll tsk-tsk over such maudlin talk. It’s not intended to be self-indulgent. It’s a wake-up call, a declaration of how I’m going to spend that time. And while we haven’t been vocal with our children about the pact, we’ve started to broach it with our husbands. They know we are adamant and committed, that how we may choose to die is as important to us as how we want to live.

If in the end I get to dodge the dementia bullet, I will view that blessing as icing on the layer cake of life. I’ve already been preparing for the worst by teaching myself to slow down, to more often say no to things I don’t want to do. I’m better at grabbing that lunch or walk with friends, and I stop at the top of a hike to savor the view and listen to the birdsong. I pay closer attention when my children have something to tell me instead of rushing on to the next thing. The gift of fully understanding that you will die is to come to terms with how you want to live. And if you are lucky enough to have sisters like mine, that only makes the journey sweeter.

Lee Woodruff’s latest book, Those We Love Most, is a novel about family secrets.

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First Published Wed, 2012-12-26 12:18

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http://www.more.com/relationships/attitudes/sister-pact