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

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.”

Originally published in the February 2013 issue.

What’s your reaction?

Comments

02.15.2013

I nursed my father and mother through Alzheimer's and Lewy-body dementia respectively. If I had someone who could help me bow out gracefully should I not realize that I'd gone past the point where I could recognize the danger, I would be grateful. Sadly, I do not.
If you've not seen this happen to a loved one, you can't begin to know the horror of wondering what your last years will be like.

Laura E. Kelly02.02.2013

I was glad to see this article. The boomers, who so avidly did leg lifts with Jane Fonda, will soon be in this sad situation in droves. We need more open conversation and legal options for dealing with this imminent health crisis, not political debate that gets cut off when someone says the words "death panels."
As for preparing for your own end, I always think of the vivid scene in Lisa Genova's book Still Alice where the ailing Alice writes herself a note designed to test her future cognition, with instructions on what to do if she fails the test. When she eventually fails, she goes to carry out the wishes of her formerly well self, but forgets what she's doing along the way. And ends up lost, as feared, since her family can't/won't help her (despite pacts). A haunting scenario.

Dorothy Walsh01.30.2013

Thank you for this beautiful essay. My sister and I have had this same conversation after our mother was diagnosed with Alzheimer's about 7 years ago. It has been a strange and desparately sad journey as she has lost more of herself every year. My mother, if she had any cognition, would be mortified to know that this was the way she was spending her last years on earth. The one thing she loved more than anything were her kids, grandkids and great grandkids. She will never know the ones who have yet to be born. My mother was a very even tempered woman but being robbed of the chance to be with the kids would have pissed her off. My fear, of course, is that I will get this disease but I also fear that if I did it would rob me of the ability to decide to drink that cocktail.

Katie 01.30.2013

If she were serious about this pact, she wouldn't have written this article. If one of the sisters commits suicide, the other two will be in jail because here's the plan, laid out completely. It's just a ploy to sell more books by being so bold.

rie LeMer01.29.2013

Thank you More for this brave article. I continue to admire Lee for the life she crafts, for her resilience, smarts and boldness. I appreciate this glimpse of the deep abiding love of siblings and their crucial role in all things joyous and difficult.

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