I. Divinely Demented—The Magic of Imagination

This talk, the first in a series of three, was presented Tuesday, May 15, 2018 at the Cooperage in Honesdale, PA on behalf of the Friends of the Wayne County Library and Growing Older Together. 

I am especially honored that the Friends of the Wayne County Library and Growing Older Together have invited me to speak this afternoon. These two organizations represent essential qualities that made our story possible. Community is the more obvious of the two, but without imagination I would not be standing here, almost 3 years later, still calling this journey―not a tragedy―but one of the greatest blessings of my life. So right on readers, and thank you. 

Sunday was Mother’s Day and I thought about my mother and the mutual labor we shared in rebirthing me. It takes imagination to see potential in pain. Imagination is what made our story transformational. 

On Mother’s Day, I also thought about the fact that I am not a mother. I miscarried twice during my marriage. The first time was my birthday. The last time was four years later, on mother’s day. Had I birthed those children, it is unlikely that I would have also birthed this book. This is why imagination matters. Life is full of struggle and suffering; it takes a bold, free, imagination if you are going to do more than just survive.

This afternoon, I am going to walk you through how my father and I tapped into our imaginations while caring for my mother―and what happened.

This first poem  is the title poem. It was written to give the collection context and it’s the only poem not composed during the experience. I apologize for the curse word, it’s one of three. Yes, my mother taught me better, but as you’ll read in the book, she’s responsible for saying much worse―and directed at me.

Materials on Hand

I desired fulfilling love

And sought

My liberation

A spiritual transformation

—I wanted something

More

Than everything

I’d known before.

I imagined my perfect lover

Then conjured into being

Years

Spent caring

For my mother—

Fucker!

That wasn’t what I

Wanted

To write an original tale

To find my voice—

The artist in me

Set free.

I thought I’d paid my dues.

So this is how

The Universe

Pays me?

Obligated

To put my dreams

And life

Aside

—Or so at first It seemed.

Compassion

And resentment

—Another test

The battle inside of me;

Surrender and humility

If only they came easily—

Instead

They bring us to our knees

Indifferent

To our woeful pleas.

But life is infinitely more

Than everything it seems,

And with its own creative schemes

In time

It answers

All our dreams.

Fulfilling love?

I fell in Love

With Life

—My cosmic lover

Not one

But everywhere

In everyone.

And of my art?

I came to understand

The materials on hand

They’re all we ever need

—The artist that resides within

Wants only to begin.

On the back cover it states that Materials on Hand is a spiritual journey that serves as a roadmap to transcendence. I just recited that I was seeking liberation―a spiritual transformation. While that may be true, the path I followed was as secular as they come; available to anyone regardless of whether you worship atoms or believe in angels. All that is required is a little critical thinking, your desire and a willing imagination.

The desire to be free of struggle and suffering is universal, our specifics are personal. I write in the introduction how in the early days, shortly after my mother’s diagnosis, my father shared with me the doctor’s prognosis and advised that I enjoy my mother now while she still retained an awareness of herself. I remember the moment vividly, not because I shared his grief, but because I felt a terrible shame. I loved my mother, but our relationship had never been what I considered―enjoyable. I knew that her love for me was unconditional, but her affection and approval were not. I spent most of my life trying to decondition my defensive response to my mother’s criticism; to not react. I confess that I mostly failed. Her dementia would be my ultimate test―there would be no more arguing; no more attempts to be understood. And I couldn’t just leave, as I had done after graduating from college, when I moved to California and put as much distance between us as possible. Being around my mother had always been both emotionally and physically taxing for me. Especially so, because I am an empath, which means I’m hardwired to seek harmony, even when it’s at my own expense. But instead of harmony, every visit home involved tears, migraines, exhaustion and arguments. The consequences of our relationship had left me self conscious and insecure―a condition from which I also wanted liberation.

Even now, it’s difficult for me to paint this one dimensional picture of my mother and our relationship, but I offer it because it’s important for appreciating the depth of this accomplishment―our transformation.

For those of you who have not read Materials on Hand, I’m going to take a moment and provide a brief overview of the essential details. My mother was 76 when she was diagnosed with Parkinson’s and Lewy Body Dementia. My father was 77; they had been married for 52 years. Over the next 6.5 years of her decline, my father took care of my mother at home as her primary caregiver, and I, as the youngest of their three children and the only one without children of my own, helped take care of both of them. I was living in Buffalo, NY at the time, and commuting back and forth to their home in Oxford, Maryland―usually staying for 3-5 weeks at a pass. When I wasn’t with my parents physically, I spent an hour with them every morning and an hour every evening over FaceTime. My Dad made a stand for his iPad and he’d prop me up at the table for breakfast and dinner. Actually, he usually called well before dinner in need of hand holding when it came to fixing meals. Before her illness, my father, who had travelled for business, had never changed a bed, done laundry, shopped, cooked, cleaned house or written a check.

One afternoon, when I was at their home, I was following my mother around―bored―tasked with making sure she didn’t hurt herself or hide anything we’d later look for and not find, when I decided to pull out my journal and write a list of the many moods she cycled through in any given day. That list became my first poem.

The Discord of Dementia

Endless days

The sum of moments

Mercurial—

Docile

Feisty

Frustrated

Sweet

Confused

Inconsolable

Tired

Agitated

Asleep

Busy

Still

Busy

Anxious

Distracted

Afraid

Delusional

Sarcastic

Stubborn

Incoherent

Innocent

Funny

Churlish

—Cherished.

I continued to write a poem a day for what would be the last year of my mother’s life. I religiously wrote every day, one poem, drawing my material only from that day. As a result, the book reads as a narrative. I wrote in a style that mirrored the cadence of my mother’s fragmented speech, and I wrote as if I was speaking to her. I mostly refer to my father as “your husband,” given that my mother frequently didn’t know who I was. That was especially true in the beginning when she was still taking drugs, and every time I visited she would ask my father―Who‘s that tall girl in the kitchen?

I didn’t intend to write a book; the project was my own catharsis. I was, however, sharing my poems on Facebook and before long I realized that my words were helpful to more than just myself. In comments and private messages, friends and strangers were thanking me. Some were also caring for a loved one with dementia and were inspired by our example. Others had already lost a parent or grandparent to dementia, and thanked me for giving a voice to their experience. For some, I was giving them a window into a day-to-day reality they couldn’t begin to imagine. And a few more wrote to tell me that they also had a difficult relationship with their mother and to thank me for my self reflection as I worked to heal those wounds. Everyone―fell in love with my father.

This book is a tribute to his heroic example of strength, compassion and humor. For me, my father had always been a kind of avatar; he embodied his humanity more fully than anyone I have ever know. His example inspired me―then and still―with the desire to be my best possible self.

It is also dedicated to my mother’s two amazing home care companions―a mother-daughter team both named Vickie who came onboard shortly before I began writing. Both Vickie’s would arrive in the morning at 8am with huge smiles and usually whisk my mother off for a day in town, keeping her busy until her afternoon nap when my father, or I, would take over again. Conscious caregiving requires a community of support, and the women and men who bring their hearts to this work deserve to be recognized.

I like to include this next poem because I feel it’s important to acknowledge that my family was fortunate in being, financially and logistically, able to care for my mother at home. There is no one right or better way to care for one another; what matters is our presence, intention and love.

A Single Mother Thanked Me

Seeing me

Out with you,

A single mother thanked me—

“One mother

Can care for five children;

But today,

Five children

Can’t care for one mother.”

Intense work

Important love

We outsource

The opportunity

To grow

Familiar with death

For a minimum wage

To anonymous caregivers

Who may—

Or may not

—Care.

My father did not read my poems―occasionally I’d share one of the funnier ones with him―but for the most part, the experience was too emotional. He did, however, give me his blessing to share our story and it felt important to both of us to offer others walking the same path a different perspective than the grim expectation we’d been given.

My mother died at home on June 8th of 2015. On July 14th, my dog unexpectedly died. That September, my father was given a pacemaker and moved in with me; by January, a diagnosis of mesothelioma. On August 25th of 2016, my siblings and I helped my father die at home.

By the time my caregiving responsibilities finally ended, I didn’t particularly feel like revisiting this collection. I didn’t want to think about death and dying any longer. Only my promise that I would publish it, and a belief that our example could help others, compelled me.

So here we go. In the collective narrative, dementia is considered one of the worst things that can happen to a family. We were no exception. Caring for my mother was not easy. I will warn you that this next poem is unpleasant, but I also promise it will be the only difficult one I share today. This was typical of my father’s experience.

What the End of the Tether Looks Like

Readers

Do not read this

If it will disturb you—

This was not an easy day.

Your husband put you to bed

Last night at eight;

He helped you to the bathroom

At ten.

From ten to four

You talked

Pleaded

Pulled the covers

—And probably cried.

You were up

Showered and dressed

By six.

The morning began with you

“Carpet bombing”

The bathroom

In shit.

Vickie had the day off.

You have another UTI.

The antibiotics aren’t working.

You slept all day;

Your husband did not.

He helped you clear

The phlegm in your throat

With his fingers.

Then prepared a dinner

You didn’t eat.

You ate only enough

Breakfast and lunch

“To keep a sparrow alive”

He tells me.

Your eyes

And lips

Remained closed through dinner.

You refused your antibiotic

—Insisted you’d taken it already.

Your husband prayed

For patience.

Then asked me how long

Can a person live

Without eating?

He told me he is worried.

Then told me—

“Maybe it’s because

I didn’t get any sleep last night,

But I don’t have the right attitude

Today.

I am a bit frustrated.

It’s a good thing the end of my tether

Is a loop.”

This next poem is a reflection of my experience.

The Caregiver’s Litany

A UTI

And a stye

Under my right eye;

A cold sore

And a throat that’s sore.

There is a pivotal moment in the story when it noticeably shifts. I had just arrived in Maryland from Buffalo for another stint and that evening my father confessed to me that he was losing his will to live. We had both been telling my mother she could go. We were guilty of living in the future; not in the present like we should have been. Having been told what to expect, we expected it. Michael J. Fox has great advice about this; advice we weren’t heading. “Don’t imagine the worst, because if it happens, you’ve lived it twice.”

There is a Buddhist teaching that uses a metaphor of two arrows. The first is the arrow of pain, the second is the arrow of suffering. Pain is a physical state, while suffering is a mental state we create with our stories. In other words, suffering is self inflicted.

We know that storytelling is central to our nature as human beings, that it’s how we attempt to understand our lives and give meaning to the events that shape them, but we rarely remember to examine or take responsibility for our stories, and in not doing so, we allow them to calcify into what we perceive as a fixed, external reality.

In our case, the story―someone else’s mind you―that we had accepted as our truth, was that my mother’s condition would continue to rapidly deteriorate until she was nonfunctioning, nonverbal and bed bound, while we burnt out.

If I tell you that the night my father met my mother she was wearing a green dress, everyone in this room will envision a different hue of green, ranging from subtle variations to extreme. We don’t think about this―but what we call reality is highly subjective.

So that evening, my father and I examined the thoughts that were shaping our experience, and we discussed how to change our narrative. This next poem was written shortly after that conversation.

Letting Go of Letting Go

The art

Of letting go

Includes

Letting go

—Of letting go.

Each time

We make peace

With losing you

You seem

To make peace

With staying.

This new serenity In you

—A mirror

Of our own.

Set free

In our hearts

And minds,

Your vitality

Returns

Us

To this present.

Reminds

Us to be present

With you

—Here

Now—

As you are

For as long as

You will be.

For my father, changing the script meant refocusing his attention on my mother and his love for her―not her disease. He made plans to take her to Ocean City, where they’d spent time as young adults. We woke up in the middle of the night, took a picnic and made an outing of going out to watch the lunar eclipse. He and my mother dressed up for Halloween.

Slave to Love

Your husband and I

Looked at old photos

Of you.

We framed

His favorite.

When he saw it,

He proclaimed—

“Man!

Was she ever

A knockout.

I am such a lucky guy.

I am a slave to love.

How else

—Could I do

What I do?”

When he showed

You

The photo

He said—

“That’s my

Les-eee Baby!

Man!

Would I like to take her to bed.”

You frowned

And replied—

“She’s not tired.”

I found meaning by ascribing a higher purpose  to the work. A year before my mother’s diagnosis, I had begun writing a blog that focused on self esteem. I had made the conscious choice to share my story and the journey to heal self esteem on behalf of my two nieces and two nephews. Although they would undoubtedly have their own struggles, I hoped that my example, and my willingness to be vulnerable, might lend them inspiration and courage. Life is difficult; we need each others stories.

In my personal mythology, my mother stood at the heart of most my self esteem issues. Here was an opportunity to reexamine and heal those stories―an opportunity I would not get again. Through my writing, I began to reflect on her, not as my mother, but as another human being. This is what happened.

Double Vision

To forgive you

—I needed

To see you.

In seeing you—

I saw myself.

There is a Jim Henson quote: “Life’s like a movie, write your own ending. Keep believing, keep pretending.”

Neither my father or I gave up believing that my mother’s condition could change. It’s important to point out that there is a difference between denial and imagination. We weren’t denying the likelihood that my mother’s disease would progress, but we were consciously choosing―for our own sake as much as hers―to stay open to the possibility of a different outcome. Having a purpose bigger than the circumstances to connect with made us resilient.

Imagine

You

Were good friends

With Jim Henson

In college

So we tease

Your husband

That he alone

Is cooler

Than Kermit.

And in our

Movie

—He and I—

We imagine

Our own ending;

One

Where you

Recover.

Why not?

There are

Countless

Examples

Of possible—

Things once

Accepted

As not.

Believing

Pretending

Imagining

—The impossible

Makes more sense

Than expecting

Waiting

Anticipating

Someone else’s

—Inevitable.

Waiting

Without hope

Imagination

Or purpose—

Feels like a stagnant

Oppression.

The UTIs

That plagued you

Have not returned

In over three months.

The phlegm that

Threatened

To choke you—

Abated.

You no longer

Sleep

At the table

Refusing to eat

And each day

We celebrate

Your meals

As monumental

Victories.

Can your mind

Heal?

—Who are we

To say.

So in the meantime,

For our own sake

And yours

We keep believing.

Keep pretending

And imagining

Our own ending

—The one

In which you

“Get better and better

Every day

In every way”

—Another of your husband’s

Favorite things

To say.

I open the book with a Ralph Waldo Emerson quote: “It’s not what you look at that matters, it’s what you see.”

There are a lot of poems in the book about trying to get my mother to eat―this was one of our biggest challenges. One evening she was being particularly obstinate and my father, as usual, was patiently pleading with her, when she turned around and said, rather caustically―”What do you want you old fart?” I remember us telling people this story and rather than laughing, as we had, they found it disturbing. Here was confirmation that our reality was a choice.

Laughter as Medicine

You made us

Laugh

Uncontrollably—

Outbursts

That continued

To burst out

Long after

The moment

Passed.

You called

Your husband

An old fart.

Tears

Streaming

Down his face,

He asked

What would

His life

Be like

Without you?

“My life

Would be

So dreary!

I haven’t laughed

Like that

In weeks,”

He plants a kiss

On your cheek.

You tell us— 

Most people

Never laugh”

—And I wonder

Who is healing

Whom?

Having used the word obstinate, I have to slip in this poem.

Obstinate

Your husband

Asks you

If you’d like

A piece of grapefruit.

You emphatically

Tell him—

“No.”

“I thought you like

Grapefruit?”

—He asks.

You answer

That you do;

You love it!

Confused,

He says—

“I’m fixing this grapefruit

For you.”

You fix him with a look

And reply—

“Well, I’m not eating it

—I can tell you that.”

He smiles

And wants to know

If you are familiar

With the word—

Obstinate.

You tilt your head

Thinking

And ask—

“Should I be?”

Emerson wrote that “People only see what they’re prepared to see.”  Our stories are self-referencing. Our minds literally determine what we see, not just our interpretation.

My father, Vickie and I had a dramatic experience of this truth. One afternoon, I went to the cupboard after lunch to make a cup of tea. When I opened the door, I saw this oversized, glossy magazine page taped to the inside of the door. Glaringly obvious. It was a photo of Cheryl Tiegs with her dogs. I started laughing and asked my dad―What’s up with the pinup? Vickie immediately chimed in that she’d seen it earlier that morning and wondered, too. My dad―had no idea what we were talking about. There was a long moment of confusion. This was the most used cabinet in the house. My father was in it every morning making our smoothies. I drank tea at least three times a day. Vickie kept her things in this particular cabinet.

We considered whether this was one of my mother’s redecorating ideas, but it hadn’t been there in the morning, we were all certain about that, and my mother hadn’t been out of Vickie’s site since breakfast.

When my father finally got up to look, he knew immediately who was responsible. He and my sister had a running joke that involved sneaking a poster of Jacqueline Smith―another of Charlie’s Angels―back and forth into each other’s house. My dad had come across the Cheryl Tiegs photo awhile back and hidden it in my sister’s house. Serendipitously, at that moment, my sister called and we all assumed she had to be nearby―author of the prank. She was at work. I asked her where her husband was―also at work. When I asked her about the picture, she told me she had hung it there during her last visit―two weeks earlier.

For two weeks―none of us saw what we weren’t expecting to see. I can’t begin to tell you how that rocked our world―my father and I were still talking about it a year later―and the implications.

So if you can make this leap with me, and appreciate that your reality is a story, and what you see is filtered by what you expect to see―how do you begin to change your story?

Returning to the poem, Laughter as Medicine. The ending line―”And I wonder who is healing whom?” represents the framework I started working with. I began asking if my mother’s illness couldn’t be something beyond what our minds were conditioned and prepared to accept. The disease stripped away my mother’s identity construct as we knew it, but there was no question for me that a deeper, truer essence was still present.

Half Human; Half God

You

Vickie

And virtual me

Lingered

At the kitchen table

This morning.

Vickie and I

Sharing stories;

Exchanging news.

You were alert.

Your eyes tracked each of us;

Your facial expressions

Mirrored the conversation.

Occasionally,

You even chimed in.

And though the words

You strung together

Meant nothing,

You delivered your gibberish

With perfect inflection

And timing.

You remind me

Of Anis Mojgani’s

Spoken word—

“For the 2-year olds who cannot be understood Because they speak half-English and half-God”

—Yes

This feels right.

Because I do not speak

This new language

You use,

Does not make it

Less divine

—For surely you are.

Unfortunately, we live in a culture that denies and fears death. Through our institutions we have made death a medical event and stripped away the sacredness. Preoccupied with our busy lives, caregiving becomes an inconvenience. But around the globe and across time, other cultures have and do nurture a different narrative―one where death is anticipated as a rite of passage; a threshold between one existence and the next.

Years ago, I heard a description of the transformation process a caterpillar undergoes in becoming a butterfly. Snug in its cocoon, the caterpillar begins to decompose. Keep in mind that a butterfly is not a caterpillar with wings, it is an entirely new being. Decomposition is not pretty, but in the fetid stew that is created, what are called imaginal cells emerge and begin to feed. Over time, these imaginal cells multiply, eventually connecting with one another to create a butterfly.

I find this description magical and I played with this metaphor, among others. What if my mother’s experience was actually serving her soul, and a higher purpose? A sacred and mysterious process to be embraced rather than feared?

Are We Evolving?

I return

To the question

Of are you

Devolving?

Or could you be

Evolving?

How do we know?

You show us

Daily

How little

We know;

Teach us

Daily

To stop

Thinking

We know

—Anything

About

What will be.

They say

The elderly

Lose their sense

Of smell—

You never

Had one;

Now you do.

On the boardwalk

Yesterday

You announced—

“I like doughnuts.”

A random comment

—So we believed.

Then farther down

The boardwalk

I saw

What you could

Smell.

Yet even my eyes

Fail to see

All that you

Perceive—

People and scenes

Undetectable

To us.

You hear

Better than

We do;

So well,

We joke

You hear

Our thoughts.

I know no answers

To explain

The anomaly

You have become,

So I hold you

In my mind

With humility

And wonder—

Will we evolve

—With you?

I didn’t expect answers, and I didn’t get them, but what we did get―was transcendent. Not only did my mother stay―all things considered―healthy and engaged right up until the last week of her life, but my father and I experienced a rare sense of wellbeing, the kind associated with a deeply joyful state of mind.

Thriving

My father and I

Were talking again

About amazement

—Our own.

He recounted

How many

Warnings

He received

About the caregiver’s

Toll—

“I’m thriving.”

I believe him.

I’m thriving, too.

When I’m away

I want to return

To you.

To this absurdity

We share—

This source

Of so much

Love

and laughter.

Does life

Get better

Than this?

When I first graduated college and moved to San Francisco, some anonymous angel I no longer remember gave me a book that has influenced my life more than any other. I used to refer to it as my sacred text. The book was written in the 1950s by Brenda Ueland and is titled―If You Want to Write, A Book about Art, Independence and Spirit. Although the book is intended as a writing guide, its message is deeply spiritual and offers instruction for making living itself an art.

In it Ueland writes―“For when you come to think of it, the only way to love a person is not to coddle them and bring them soup when they are sick, but by listening to them and seeing and believing in the God, in the poet, in them. For by doing this, you keep the God and poet alive and make it flourish.”

She also writes that Love is the highest form of creativity. To truly love another person demands imagination.

We were living on the surface of our experience until the night we rewrote our script and began living as artists―artists who celebrated my mother as a poet and god; and our lives as sacred.

Your State of Grace

Do we recognize

The beggar

For our

Teacher?

The State of Grace

Without a label?

When did

—You

Become divine?

Which poem

Marks

The crossing

Of that line?

I told you in the beginning that my path was secular; available to anyone. So let me end by bringing this conversation back to Earth. Before becoming my parents’ caregiver, I worked for almost twenty years as a creative consultant and copywriter. My job was to take less than desirable circumstances and through storytelling affect a desired outcome. Marketing is the secular equivalent of prayer. I like to call it spin to win. It’s what P.R. specialists do every day―and it works. Hypnotists will tell you, our brains are neutral; they don’t care what you tell them, so start telling yours beautiful, empowering stories and watch your world change as ours did.

I know I’ve said an awful lot this afternoon, and since we all know that poor memory is becoming ubiquitous, the title of this final poem sums up everything you need to remember―

The Answer is Love

The answer

According to Your husband—

Is Love.

So you ask—

“What’s the question?”

Poet and performing artist, K. Page Nolker, writes and speaks about the emancipation of her soul through the art of conscious dreaming. Her current work, a modern epic poem in three parts, models the transformative potential in eldercare and dying. Book One, Materials on Hand―a spiritual journey set against the backdrop of her mother’s dementia―is available on Amazon, Kindle and at local independent bookstores by request.

Opening February 2019, you can find Page at Cairn Cove Retreat, a magic, dream lodge in the Pocono Mountains where guests come to write their obituaries, discuss the details of their death wishes and imagine their fairytale finishes. #deathpositive is #lifeaffirming at #cairncoveretreat