How Writing Can Help the Alzheimer’s Caregiver

Author and poet Margaret Gibson shares her personal experiences through poetry, and writes about her journey as a caregiver for her husband with Alzheimer’s disease with us today. Learn more about how writing can help the Alzheimer’s caregiver.How Writing Can Help the Alzheimer's Caregiver

Writing Poetry Through Alzheimer’s

I was my husband David McKain’s primary caregiver for six years, during the earlier to middle stages of his Alzheimer’s. He now lives in an assisted living and memory care residence twenty-five minutes away, and I am with him for some hours each day.

At the onset of the disease, as I learned to take on new roles and to find my balance, I wrote no poems and had completely given up my professional life of public appearances and teaching. But then, the need to transcribe what both David and I were experiencing returned. 

BrokenCup,” the book of poems written about these Alzheimer’s years at home, may, as a book of poems, be a challenge. Or you may think it will be. But not so fast! Think of a series of poems as an “inner biography” and you may be able to relate more easily. What does it feel like, this life of care giving, this life of one loss after another, this long goodbye.

David once said to me, “I don’t understand why I’m like this.” Memory loss and the diminishing number of things he could do were confusing to him. He was often at a loss, depending on me to translate or interpret for him. Here’s an excerpt from a poem called “Respect” which materialized out of his words to me — and my response to him.

 

“I don’t understand why I’m like this,”

you say.  Your hair is silver-gray, but I take

your hand like a child’s, and we sit down

on the yellow sofa and settle the cushions.

You trace the splay of small bones on the back

of my hand as I talk about the forgetting,

how invisible it is.  Had you

a broken leg, or a brace, “You’d know,” I say.

“You’d see it plain.”  What tangles and knots,

what misfires and seeps away, who sees

that?  Who sees that, I repeat, and slowly

something shifts, a dead weight

falls away. Respite, I think, as the light

returns to your eyes from somewhere inner.

You’re clear, the way you used to be.  Clear.

 

For the rest of the day, David read around in a few books, underlining. He was, for the moment, happy. As for me, the moment served to send me back to re-reading David’s books of poems. While I saw more clearly what had been lost — and I wept and wept — I also re-covered a deep sense of appreciation for both of us and how we lived together, even with the challenges of Alzheimer’s. An acceptance of just what is keeps the heart open.

Over the years of our marriage, David and I believed that by knowing oneself more deeply (surely a life-long exploration) we could live in clarity, simplicity and compassion. With Alzheimer’s, so much changed. The diminishment of memory and cognitive skills led to confusion and frustration. Lost keys, lost eyeglasses, forgotten appointments, the reduced ability to carry on a conversation, driving erratically — you name it. Things got put away in the kitchen —but where? In the car I became David’s GPS and coach, but did that keep him from turning into incoming traffic?  I speak of practical losses. The inner life also gets muddled. “I used to know who I am,” David said once. This loss is more fundamental. As one poem puts it:

 

We’re losing him, he’s fading away, he’s not

himself, he’s slipped through

a rip in the mist.  He’s with us, and not.

 

Here’s a short poem called “Tasks,” that portrays what may be familiar to many caregivers, who take on all the roles in the household. The poem has an epigraph:

“The task of becoming a human being is to transform suffering to joy.”

 

TASKS

And along the way, there’s housework.

Forget the computer, the checkbook,

the inscrutable repair of whatever

overheats or squeaks or ices over.

Never mind the wooden lamp post, rotten,

fallen on its face like a corpse in the wet grass,

which needs to be cut.  Your allotted

jobs are to dust, fold the laundry, tasks

in which you take such unsung pleasure

I’m abashed.  I’m sorting cutlery; I’m Job

in a bathrobe, wondering where oh where

in the wrong drawer you put it.  “We’ll make

a good wife of you yet,” I nearly joke.

But look at you: so happy, I bite my tongue.

 

The caregiver who speaks the poem — who is myself —  is struggling. I didn’t know yet that resistance was nearly closing my heart. Did I want an efficient household? Or could accept the difficulty — and my own feelings — with grace and even humor? Joseph Goldstein has written, “Compassion is that natural response of the open heart, but that wellspring of compassion remains capped as long as we deny or resist the truth of what is there. When we deny the experience of suffering, we move away from what is genuine.”

So yes: It is crucial to create moments of joy. Yes, someone else’s joy may be at least in part a complication for you. But yes, also: you have to witness your own feelings and thoughts rather than identify or get blown away with them; you must let them pass through you, you must feel them and also let go of them — then move on to the next moment. An unfelt, or repressed, feeling hangs around. The miracle is this: we can feel, we can let go and we can feel more deeply in the process.

Who am I? That’s a question we might only define superficially. Am I my role as writer? My role as caregiver? As wife? As grandmother? As gardener? As teacher? The challenge of being with someone with a brain illness that creates forgetting, it’s… well, heartbreaking and fascinating. Who am I really? Loss after loss, any inner biography has to ask: What remains? Who am I really?

Here’s an excerpt from poem called “Simple” that takes on that question. At its core is the answer David actually gave. He had dropped enough “selves” to simplify and see what was essential. In the poem, I ask:

 

What of the self, or the no-self,

outstays loss after loss?

I watch the wind

fill with leaves, red and gold,

as the tree that was once

a summery billow

thins to an outline.  A friend

told of a woman he knew

with dementia.  “And who are you,”

someone asked her pointedly,

and she replied, I watch.

“How is it for you,” our son

got up his courage and asked you,

hesitant, not wanting to offend.

“I forget this and that,” you replied,

“but it doesn’t bother me.

I love Margaret, and you, and your sister—

that’s what I remember.  It’s that simple.”

 

Everything is a gift — even the most painful experiences, as well as the joyous (which we of course prefer). I have found that keeping a journal, recording the gifts of my own impressions and feelings, is a practice that leads to a deep appreciation of life just as it is. Appreciation leads to joy, and joy to energy and a life closer to being at one with itself. It’s a mystery, but Alzheimer’s might actually carry us closer to… who we really are.

About the Author

The poems and excerpts from poems in this article are from “Broken Cup,” by Margaret Gibson, LSU Press, 2014. For more information, visit her website:  www.MargaretGibsonPoetry.com

Are you a caregiver who has used writing to help you through your Alzheimer’s journey? Share your experience with us in the comments below.

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