A favorite beach walk

My dad would be 67 this week. I’ve told my daughters about his love of pot-roast and German chocolate cake. I’ve finally mastered his favorite recipes…after years of “Pretty good, sis” (aka un-chewable even for those of us without Parkinson’s). Sigh.

The time since his death feels compressed. Compressed in the old sense, like a soft note washed in jeans, or a tuft of grass after months of snow: all folded up. Just how I felt as a caregiver.

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“Cover of L’Estampe originale, with notes”. Henri de Toulouse-Lautrec. Or: me, upper left, three years ago; me, lady in hat, on the other side of time

When I asked my dad to move in with us, I knew I was right for the job. I knew it would be hard, too, but COVID-19 had descended upon us; my dad felt vulnerable. Shoot, we all did.

His isolation became a matter of urgency. We had been talking about this as a family, anyway. Not to mention the sagacity of his neurologist: “Why on earth do you live alone?” she asked him/me at most appointments. If only I could’ve shared my fears with her—the slinking ones, deep down—“How on earth do I live with my dad again without losing our autonomy, sanity, and sense of humor?”

Doctor?

But I didn’t know to ask these questions. And the move-in seemed overdue. My dad never liked to cook (unless you count chili in a can with Fritos in a bag); he was losing weight; he was lonesome. Then there were the questions, the things we speculated about as young adult children who visited: did he take his meds regularly? did he turn off the oven every time? did he still drive safely (should he stop)? How to ask these questions…

Throw a pandemic at this situation and, next thing you know, we were living together—one bathroom, six acres, two cats, a fiance, a girl and her dad with Parkinson’s on a riding lawn mower. A sitcom waiting for a theme song!

There are spreadsheets, beloved social workers, and calculations for these kinds of decisions, for this kind of a project. Sigh.

But long-term care plans aren’t one-size-fits-all, no more than Parkinson’s itself. One of the benefits of just throwing ourselves into this, being of non-linear mind and heart, is the ability to empathize and to adapt. I knew that I could be compassionate and brave for my dad. I could get him to those appointments on time…barring cats, ferries, and traffic.

I could and often was/did all those things. But, just as often, I felt like a failure. I felt lousy at it and I got angry. When I fell short, I felt very, very small.

When things were at their worst, it was because I acted out of my fear of failing my dad and losing myself in the process. I desperately wanted him to care about his health and wellbeing as much as I did—even though I could recite the chemistry of apathy that he faced every day.

Even though we both had the same temper.

Even though we really just wanted the same thing—to cross the divide that is Parkinson’s.

“Woman Reaching Over a Wall, study for The Life of Saint Louis, King of France”. Alexandre Cabanel. Black and red chalk, with touches of stumping, on cream laid paper. God knows if this lady made it out of her well.

Instead, I often tripped over my own intentions and fell down, down the Caregiver’s Well—fed by the Aquifer of Trying Too Hard—way passed Alice—down, down to the trickling Spring of Medicaid. Most of my 20-something-year-old ideals fell by me like keys. And that overdue library book.

I spent too much time down there. The Caregiver’s Well is a place of great—and grave—imagination. I was slow to get out once in. The escape ladder might be longer the younger you are, but I’m biased.

And I learned something else. Somewhere down this continuum of living with my dad (again), I taught myself a language of another. Me and an other. Him and his kid. One another. Sure. Makes sense.

Yet I was becoming an other to my very self. Am I responsible for him? Why am I so angry? What if he chokes, falls, crashes the car? How hard should I try to convince him to eat? Where does caregiving end? The bathroom?!

And, many times: should we figure out some way to pay for that $500 med-dispenser-robot?

If I could do it over again—oh, there are so many things I would do. That’s mostly why I’m here, writing Hey Sis. And that’s to come. But now…?

“Woman and Child at the Well” by Camille Pissarro. 1882. Oil on canvas. Impressionism. Etc.

Now, I’m raising my daughters and trying to write to you, to him, whenever I can. Now, I’m trying to figure out if, as a parent, I’m still down the same Caregiver’s Well or if it’s a totally different one? And, now, I need to eat something, but I want to finish this letter. I can even find myself quoting my dad this very moment: “I need to get some calories in me.”

How frustrating that used to be. It’s 1 pm, dad, why haven’t you eaten?

Now, I smile when I say it. He’s here for a moment. Happy birthday, dad. And now…he’s gone.

Yes, I knew he would go, probably too soon. We were assured when we were young that Parkinson’s doesn’t kill you (another topic for another time) and I clung to that a bit. We all die someday, and such. But I kept his death as hypothetical as I could—to the last. I think he did, too.

Now, grief comes with its own well, and there are endless questions inside (way, way passed Alice). Many of them surprise me, like, Where is he?

Others come out of tender curiosity. I wonder what my dad would think of my youngest girl’s big, deep chuckle; I can see his smile when she does. I wonder what my dad would think of AI Slop, of the NBA’s crazy trades. How long would he give this presidential administration? How would he grieve the world’s latest wars? Would he have found a video to make him laugh harder than that talking dog?

I wonder how long he would’ve put off a walker. And I wonder how many more hugs we could have shared.

Then there are the quiet comforts, the non-questions. I don’t wonder if he would be waiting for a cure for Parkinson’s; he stopped talking about it years ago. I don’t wonder what he would say about our house, all 850 square feet (and no microwave in sight), or how much he would love his granddaughters. I don’t wonder what he would say to me about the pot roast this time (cuz it’s damn good).

What a relief it was to make this. After a couple cross-country moves, some renting, some financial maneuvering, some renovating—our beloved kitchen sink is finally dressed.

And now our daughters can play that perennial peekaboo, just underfoot.

Before (it still looks like that, tbh) and after

The materials:

• fabric

• sew-on velcro tape

• fabric glue for if/when you buy the wrong velcro tape and it doesn’t come pre-glued

• sewing machine (don’t wait ten years to clean it…ahem)

• cat kids love and fun

The steps, riffed on the realest DIYer I’ve ever watched, Old World Farmhouse:

1. glue the soft side of the velcro tape to the inside of your sink

2. iron your clean, cut fabric (to measure), including hems (the fatter the better, so the skirt has something to sit on)

3. zig-zag stitch the hems closed

4. sew the pokey side, so to speak, of the velcro to the back of your skirt

5. attach sink-skirt like the 21st-century human you are

I ended up buying fabric for this project because I just fell in love with it. We’ve lugged around my large tub of scraps and pieces for years but none of them fit. That said, I didn’t have the budget for an overflowing, luxurious skirt, so I accentuated things with made-up pleats.