Eating the birthday card

Home Burial essay series: Number 7

Lubin Baugin

Dad is working on the log house with me. There are stacks of boards outside, crates of tools in the corner, sawhorses set up. The windows aren’t in yet, and I come here most days to build. Many days, Dad joins me. His Alzheimer’s has progressed enough that he can’t work a power saw safely, but he can still hammer a little, fetch tools, hold boards.

Today the kids are here, too. Adrianne is at our tiny house up the driveway, tending to something. Outside the log house, Siporah and Wendell have collected lumber scraps and set up a make-shift bakery. They holler to Grandpa and me, and so we take a break and go see them.

On a rough-sawn pine board are their goodies: flat dirt-cakes and little round chunks of dried mud, laid out for sale. They stand behind the board, describing what they’ve made. I pay them with a leaf and they hand me a cookie. Grandpa is eyeing their stand with hungry eyes, so they give him a cookie for free, and he immediately chomps into it.

“Grandpa!” Siporah yells. “No, no, no – it’s dirt! Grandpa, spit it out! It’s not real!”

It’s not clear the dirt cookie tastes all that bad to him, as his face registers no complaint while he chews it. But still, it’s dirt, and we get him to spit it out, and the kids stare at him in wide-eyed amazement.

Grandpa just ate their dirt cookie for real. They’ve got a story for weeks.

***

Dementia is like all suffering: There’s no satisfying spiritual category for it. Someone you intimately know goes away, retreats into a solitary wilderness. Their perceptual experience becomes an ever-growing mystery, their understanding of the world a riddle beyond riddles. It’s not only that they forget you are their son or daughter or husband or wife. It’s not clear they even know what a son or daughter is anymore, or that the things of this world have names. Meaning slowly evaporates from their consciousness, and walking with them is a journey of befuddlement.

And yet there is no mourning, because they are still with us. The going away is incremental, happening over years. It’s often frustrating (Why did you put the dishes away dirty?). At least in my father’s case, the bridges of emotional connection can collapse. And it all creates a web of relational complexities. How to be with one who does not know how to be in the ways we expect?

Something very sad is happening, and yet the sadness runs beneath the surface, hard to get at. The above-ground experiences are just confusing, disorienting, at times maddening.

For instance, my daughter and I walk into Mom and Dad’s house. Mom greets us, but Dad keeps looking down at his crossword puzzle, as if we aren’t there.

“Jim,” my mom says, “Joe and Siporah are here.”

He looks up at us, blankly.

“Say ‘hello’!” she goads him.

I tell Mom we don’t need to be greeted, and am frustrated she still asks him to do this. But manners are important to her.

“Hi,” Dad says, then looks back down at his crossword puzzle.

The grey cloud of familial tension passes, and we move on. This is how it goes.

After Dad dies, several people will note, “Well, you probably already mourned him.” But I hadn’t. Encountering dementia in another is nothing like the cataclysm of death, at least not for me. It’s more like a tiring wind that never stops, wearing away the features of the statue we thought we knew. One day is like the next. Something is slowly vanishing, but it’s hard to say what, and the emotional release of death never occurs.

***

When we describe suffering spiritually, it can seem neat and clean, even systematic. On Good Friday, we venerate the cross, but on Sunday we celebrate Jesus’ resurrection. We suffer, then we heal. It hurts, then we’re liberated from the hurting – that’s the spiritual story, right? Just trust something good will come of it all? I think not.

Of course in some experiences of suffering, meaning blooms like a wild prairie – it would during my father’s dying days – but not so during his life with dementia. Like severe depression, childhood trauma, or other kinds of suffering, part of what makes it so hard is the apparent absence of meaning. What is this dementia for? Who is Dad now – he doesn’t even seem like a Dad – and what happened to the person he was?

I’m never so hungry for meaning as I am during Dad’s dementia. Can’t this somehow fit into a spiritual narrative where the holiness of the experience can be seen, touched? At least give us that. No, says the angel of suffering, that longing will not be met. You must simply sit here beneath this cross where all is lost, including meaning, including hope.

Suffering is just that: suffering.

***

Not that it all sucks. Dementia can be hilarious, too. Absurdity interrupts the days, and with Dad this often happens around food. There’s a bunch of stories like Dad’s dirt cookie story.

One evening, Adrianne brings up some little sweet cakes to Mom and Dad. She gives a plate to Dad, who is sitting on the couch doing crossword puzzles. Mom leaves her plate on the table and goes downstairs to do laundry. Adrianne leaves, and when Mom comes up, her sweet cakes are gone, and Dad is just sitting there on the couch, innocently working on his crossword puzzle.

After Dad moves into the memory care facility, he quickly becomes known for this kind of thieving. After meals, he prowls the dining room, snatching the desserts of residents who can’t defend themselves, like the 100-year-old woman in the wheelchair, or snatching the food of caretakers when they have their backs turned.

On his birthday, the kids hand him a birthday card. He looks at it with those same hungry eyes, then starts eating it, again leaving the kids wide-eyed, though not totally shocked. “I thought he was going to eat it,” Wendell says later.

And this is indeed funny. It’s funny that a kid is not completely surprised when Grandpa starts eating his birthday card. It’s also heart-breaking when you realize that, if life had gone differently, that same Grandpa would have been teaching the child to play the mandolin, guiding the child, helping him grow into the kind of gentle, thoughtful man that he is, was.