As it was last year, and the year before
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My holiday memories all take place in my middle sister’s house
A rambling, colorful, comfortable house hugging the foothills of the central California coast. A house where we three sisters and our families gathered most years, my oldest sister and her crew traveling south from Santa Cruz while I and mine headed north from L.A.
After all, the house, like my sister who lived there, was in the center of us. As was she.
With her at its heart, it was the kind of house that draws people together. We would probably have gathered there if she lived in Timbuctoo. She did Christmas like nobody else.
She presided over a house full of food and laughter and kids. A quintet of boy cousins camped out on sofas in the family room. Raucous games of Monopoly on Christmas Eve. Christmas mornings: a delirious whirlwind of wrapping paper and the smell of fresh cinnamon rolls.
The husbands assembled toys amid the cheerful wreckage, while we sisters fixed yet more food and poured an extra shot of Bailey’s in our coffee.
And we laughed and laughed and laughed.
That was in the before times
Before our kids grew up and established homes of their own. Before the three of us got older and were no longer the co-producers of the wild, merry, on-location annual events.
Before we passed the torch to our adult children, the next generation of frazzled moms and dads.
All such “befores” are in order. To be expected, even welcomed.
But also: before her marriage of 40 years blew up when her husband, the last man on earth anyone would have suspected, turned out to be a serial philanderer.
Also before — and I can’t claim the two are related — she showed symptoms of the disease that had begun eating away at her body and brain a few years after her divorce.
It’s a neurological disease that is incurable, progressive, and inevitably fatal. The best that can be said of it is that it’s rare. So rare that there’s little point in naming it.
At first, it did weird, unpredictable things to her balance, her movement, her thinking. The neurologists were vague but grim in their pronouncements.
Eight years on, she’s an incapacitated, helpless, mostly incoherent shadow.
She’s outlived all her doctors’ predictions.
Here’s the ugly truth: I wish she hadn’t
I love my sister as much as I ever did, but I have long since bumped up against the limits of my patience, my compassion, and my tolerance of uncertainty.
Anticipatory grief is a relentless pull, like having an awkward, invisible weight chained to one ankle. After enough time, you get sort of used to it. But sometimes you trip over it and find yourself swearing.
At Christmas the disconnect between how I want to feel about my sister (how blessed we are to still have her with us) and how I honestly feel (I can’t take this anymore. Time to go, sis) is exquisitely and painfully acute.
I try not to be a downer. I work hard at cheerfulness as I festoon my mantel and tree with decorations, some of which she gave me over the years. But as the familiar tunes play, my memories of Christmases past swirl within, and she is at their center.
Not as she was in the before times, but as she is now. That’s what hurts.
I live four states away from her now
After I’d helped her move three times, each time to an elevated level of care as her condition advanced, my husband and I moved to where we have access to the family support we’re likely to need one day.
I try to visit her every other month or so, which involves either 16 hours of driving or two plane flights.
During the Covid lockdown, of course, I couldn’t even do that. At some point during that period, she lost the ability to use the phone.
Sometimes a caregiver or family member can hold up a tablet for her while we FaceTime. But her eyes can no longer track the screen for long, and it’s nearly impossible to decipher what she’s trying to say.
I write her letters, but she can’t read them by herself.
So I visit. I made the trip to see her last week.
As always, I packed a few items to amuse her: a soft new bed jacket, an old photo from our childhood. And as always, I felt the pull of that dragging weight growing heavier.
Why can’t this be over, I thought. And then, as always, I regret that thought.
For a time, my sister was obsessed with the idea of assisted suicide
She talked to her counselor about it. She talked to everyone about it. Her neurologist and her psychiatrist eventually signed the required letters.
The law in her state stipulates the patient requesting aid in dying be able to self-administer the fatal elixir. At her doctor appointments, she practiced with a cup and straw.
The rehearsals gave her some comfort, some sense of control over what would happen to her when the time came. When she was ready.
My sister has always taken forever to get ready for anything. This is no exception.
She’s still not ready. But I am, and now it’s too late for her to manage her exit.
Now she can no longer handle a cup and straw by herself. Her cognition has sputtered and lapsed along with her motor skills, to the point where she can’t form a clear and lasting intention, much less state one.
So she waits. The DNR form and hospice directives are posted above her bed like a grim, paper headboard.
The disease won’t kill her directly. That’s not how it works.
She could die from aspiration if her caregivers weren’t so vigilant about feeding her softened foods and giving her thickened water. She could die from a fall if she weren’t so carefully protected.
Eventually, we’re told, sepsis or pneumonia will claim her.
Sometimes she talks about a very old woman she knew, the mother of a friend, who decided she’d had enough and was ready to go. So the woman simply stopped eating.
My sister tells that story haltingly, repeatedly, with admiration and longing. But she doesn’t stop eating.
The truth is that I want to stop seeing her like this
I don’t want to see her as she is now, a nightmare version of herself, a helpless, gently spasming figure slumped in her wheelchair.
On each visit, she’s further diminished, her words more slurred, her thoughts more tangled and wandering.
And yet I do want to see her, desperately. It is her final Christmas, the last one I’ll ever spend with her.
I need it to be the last one. It would be better for her, I tell myself, better for her kids, her friends, for everyone who is exhausted by her endless decline.
Here’s the truly selfish part: if she were gone, I could lean into holiday nostalgia. I could treasure those memories she created for me, and nestle them amid a glow of gratitude.
I could think of her as she used to be, not as she is now.
May God forgive me, but I am ready for my sister to pass into memory. To become a beloved ghost of Christmas past.
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