II. Undying Desire―The palliative potential of desire in the face of dementia

This talk, the second in its series, was presented Sunday May 27, 2018 to the Upper Delaware Universalist Unitarian Fellowship in Beach Lake, PA. 

Undying Desire


Winding down,

Your bedtime


You smile

And tell your husband—

“I look at you

And I think,


—I can hardly wait.”

That poem was a teaser; in a moment I’m going to talk about sex.

This is actually my first UU service, which is kind of funny given that I consider myself an adjunct member of the Unitarian community. Growing up I lived down the street from a Unitarian congregation and although we didn’t attend, they had what they called their wayside pulpit out by the road and every week they posted a different philosophical or literary quote that my parents used as teaching opportunities. 

When Pat asked for a summary of my talk, I warned her that knowing myself and my process, what I think I’m going to write about and what actually comes out are often quite different. I am still going to talk about how my parents’ lifelong practice of positive thought philosophy played out in the face of my mother’s dementia—I just didn’t foresee that in writing this I’d end up identifying sex as the nucleus of their success.

Ever since I published Materials on Hand, I have been trying to understand what exactly did we do? And how? At the time, sharing our example felt like enough; felt powerful. As I began to talk to readers, however, I found myself repeatedly being asked—how did your family do that? How are you so positive? I state in the introduction, in as many words, that my father was an exceptional human being, and like any charismatic leader, his example inspired us to want to show up, be present and strive to be the best version of ourselves. My father was our “fearless leader,” and though we often groaned, we adored him and willingly followed his example.

Let me pause here before I read any more poetry, for those of you who aren’t familiar with my book, it is a narrative told through a series of short daily poems written the last year of my mother’s life. I write as though I am speaking to her, in a style that mirrors the cadence of her fragmented speech, and I mostly refer to my father as, “your husband.” Some of the poems are introspective, but most of what I will be reading today are situational vignettes; more flash storytelling than poetry. If there are details you need to know, I will fill them in as we go.

This next poem is appropriately titled Classic and is my father and our family dynamic in a nutshell.


Your husband—

“We’re going to have

A great day today.”


“Oh dear.”

So is that the answer? Is our story exceptional because we had an extraordinary leader? That’s not a very satisfactory answer when what I really feel called to do is help other families facing the trauma of dementia and the burden of caregiving recognize a different potential for their own experience. As those of you who have read MOH know, my family’s journey became transcendent; Joyfully so. 

In the introduction I also write about the Axial Age, a period in history between 900 and 200 BCE when the concept of compassion first appeared in four distinct regions of the world and became what is still the core of our current religious traditions. The Axial sages were practical men looking for a practical solution to the violence and suffering of their time. They concluded that it was not what we believe but how we behave that affects change. Nearly 3,000 years later, our need for developing compassion within ourselves and our communities remains as dire. So yes, MOH is a poetic tale of compassionate caregiving—an example—but if in all this time we haven’t genuinely progressed, given the many master teachers who have graced our planet, what’s another example really going to accomplish?

Before becoming my parents’ caregiver and a poet, I worked for nearly two decades as a creative consultant and copywriter. I love difficult challenges, so I’ve taken seriously this desire to answer—how. How did we do it? And how in the face of this epidemic can other families achieve the transcendence and joy we modeled? What call to action can I distill from my parents’ example that might help other families transform their suffering?

I spoke at the Cooperage two weeks ago, on behalf of the friends of the Wayne County Library and Growing Older Together, on the importance of imagination; the role it played in our story; and the difference between imagination and denial. I feel strongly about imagination and I fear that in our contemporary culture we are allowing this precious, sacred faculty to atrophy. But imagination is probably not a starting point, any more than compassion is—they are both advanced skills, and I want to present our example as a bridge—practical and attainable.

The problem I faced—I still didn’t understand the who, what or how of our own story. Like asking a fish to describe water, I lacked the necessary context and perspective. So I started a monthly book group last fall at Loose Leaf Pages in Honesdale to discuss death and dying with other readers. A combination of market research and self inquiry. I knew I was missing an essential piece of understanding, but I couldn’t put my finger on it.

I live down a dirt road and there is this large, flat rock that people use smaller rocks to spell out messages on—spring; snow; someone’s name. It took someone writing JESUS on the rock a few weeks ago for me to finally have my ah-ha moment. So here I have to confess that my first reaction was knee-jerk and condescending—not very enlightened or compassionate. Self reflective by habit, however, I immediately challenged and changed my response. No, the person who wrote that was probably not evangelizing, but more likely praying visibly in a moment of need. I didn’t grow up with Jesus, but I realized in my reaction, that my own form of spiritual sustenance is as vulnerable to criticism as my mystery author’s faith in Jesus. Until that moment, I had remained unconscious of even having a defined faith practice, probably because of the cognitive dissonance it created for me as an intellectual. Positive thought philosophy is commonly derided for being facile and naive, if not downright harmful. And since I didn’t need to own it as a cultivated practice—it had never been a choice—I didn’t. I immediately called my sister who also gets the “how” question from her friends who read MOH, and excitedly told her, “I have our answer, it’s obvious—we were brainwashed!”

No, we didn’t have Jesus, but we had my father and he both taught and exemplified the power of positive thinking along with self agency. We were weaned on it; there was no alternative. And my mother was in on it, too. Even in her demented state, her conditioning defined her attitude.

The Power of Attitude

“I can’t stand—”

You stop


Your husband

Fills in—

“You can stand


You nod

And say—

“Anybody can do anything

They have to do.”

The day after my self dialog about Jesus, I met the author. He’s a young electrician who did some work for me last fall and was now helping my neighbor. I was out walking my dog and as he drove by he stopped to say hello. He was visibly down and he asked me if I was a person of faith. Before I could answer, he told me that he believes God doesn’t give us more than we can handle. He was handling a lot. His wife had been in a bad car accident. He told me he was grateful that he had his house still and his son. We talked for awhile, I drew from my own experience and the talk I was preparing to give at the Cooperage. He left smiling and thanked me; told me how glad he was he had stopped, that he’d been having a really, really bad day and I had truly helped him.

Spirituality is most commonly embraced as a form of therapy. I walked away from our conversation knowing that I would never again judge anyone else’s faith—or censor my own. Certainly, the mind alchemy of my parents’ positive conditioning has served, and continues to serve me. 

Preparation for Life

You taught us


Taught us

To notice;

And to not judge.

Taught us

That those

Hardest to love

Need love

The most.

Taught us

To imagine


In another’s


You prepared me

—For you.

Of course, brainwashing is technically not the correct term, but the use of mind control was firmly and completely our reality; the culture I was born into. We were taught to go to our level to cure headaches; to visualize the end result of whatever we wished to accomplish before attempting it; to believe that we could achieve anything we set our hearts and minds to—and most importantly, to cultivate a positive attitude in all things.

The Practice of Being Happy

The cover

Of a yoga magazine

That someone left behind

Tells its audience

To practice something.

I practice

Being happy.

I practice

The yoga

Of Love.

Same tenets—






An exercise

In instability.

As for method, my father was a gifted storyteller and had a personal tale to illustrate his stock of motivational and instructive quotes—as well as those posted by the Unitarian’s down the street. Through storytelling, lessons were compellingly reinforced with palpable emotion.

Let me give you an example. Forgiveness is considered central to compassion, yet it is a state of mind many struggle to genuinely achieve. But forgiveness for me, might as well be second nature, and this I believe has everything to do with my conditioning. As children, my father warned us against resentment and revenge with his own powerful tale of consequences that would make it impossible for me to make the same mistake. He played ice hockey in high school and in this particular game a member of the other team was playing excessively dirty and rough. There came a moment in the game when my father had the opportunity to take revenge on behalf of his teammates—and from the benches and bleachers his peers were egging him on. Caught up in the passion, he checked the other kid so hard that he was taken off the ice on a stretcher. After the game, my father drove to the hospital not knowing whether or not he had paralyzed someone. He would tell us this story with deep emotion and then repeat: “No passion of the heart promises so much and pays so little as revenge.” 

In the early seventies, my father studied and taught the Silva Mind Control Method, which he passed on to us. When we were old enough, he gave us Napoleon Hill’s Think and Grow Rich to read, along with Herman Hesse’s Siddhartha and his favorite essay, Foundations for Human Engineering: Knowledge versus Wisdom, by William Nickerson.

I realized this week, in preparing for this talk, that I wanted to revisit these formative works to fully understand my own indoctrination, and to better appreciate my parents’ shared mindset as they embraced my mother’s diagnosis.

I began with Nickerson’s Knowledge versus Wisdom. It had been decades since reading any of these works, and I soon realized how many of my father’s stories were inspired by these teachings. The quote about revenge comes from this piece. As well as commonsense good advice on how to become successful as a total person through your attitude and conduct. The qualities stressed are ones my father consciously cultivated in himself, and us—integrity, loyalty, humility, self-restraint, tact, courage, discretion, patience, persistence. Then I found it: enthusiasm. “Enthusiasm is the mother of effort and without it, so said Emerson, nothing great was ever accomplished. With enough enthusiasm work becomes play, and hard tasks, if they do not become easy, become at least interesting.” Yes, I can definitely point to enthusiasm in this tale; there are plenty of examples of my father turning the daunting work of caregiving into play. 

This next poem is titled, Eat Play Love. Getting my mother to eat was a constant source of tedium, frustration and concern. The only other detail you need to know before I read this poem is about Rody. Rody was the name of a family friend from my father’s high school days who was not actively part of our lives at this point, but whose name must have come up in conversation early in my mother’s decline and lodged there. We were all called Rody—along with mother, Mary, Pat and Jackie.

Eat Play Love

My husband



On the walls

Of his office

In large

Colored letters.

He finished

—Then handed me

His wedding ring.

The next day

Angry men

Blew up

New York’s Twin Towers

And I undertook

To understand;

To redefine


Your husband’s

Voicemail message

Advises callers—

“Put a little love

And laughter

In all your endeavors;

It’ll be good for you.”

I listened to him

Serenade you

This morning

His entire repetoire.

You chastised him

For keeping you

Up late last night.

—He feigned surprise.

You told him

It was late

For you

And he agreed;

6:45 is late.

You told him

“Hold that tiger”

Is not a a love song.

He told you

It is—

To another tiger.

He wiped your lips

So they’d be

“Ready for kissing,”

Then pretended

To steal one.

He asked if all your


Sing to you?

He coaxed

And cajoled


To open your lips

For your smoothie.

He aggravated you.

He asked

If all your boyfriends

Aggravate you?

Then said—

“You know who I am

Don’t you?

When that



Comes around,

He wouldn’t do that

To you

—No sir.

But that mean, old


He’d aggravate you.”

He tells you he is getting

You ready

For a good day.


In the presence

Of so much



And laughter—

I am grateful

For this

Hard lesson

Twice learned.

I am grateful

To know

The value of 


Thinking about dementia realistically, the conscious practice of enthusiasm in the face of extreme pressure and adversity, would still be considered an advanced skill. So I turned to Hesse to see what I could learn. Here was more on knowledge versus wisdom. “No mistakes, no experience; no experience, no wisdom,”  another of my father’s oft repeated quotes, and in my family, wisdom was prized above knowledge.

I should tell you at this point that my father was an avid reader, but not an intellectual. He had built his own management consulting firm and been a very successful leader and salesman, but like many of Napoleon Hill’s examples, he had started with less-than-promising beginnings. The son of a tugboat captain, he was the only of his three brothers to graduate college—and not because he was academically inclined. He was a charming delinquent with an undiagnosed learning disability. His high school english teacher told him she’d buy him a box of chocolates if he actually graduated high school and he could forget about college. In spite of her discouragement and prediction, he was accepted to the University of Maryland on a full scholarship as an athlete. When he was drafted his junior year for service in the Korean War, he tried to plea his student status, to which he was told, “Nolker, we’ve seen your grades, you’re no student.” As fate would have it, he was sent to Germany to play football for the army and it was there that he met a man who turned him on to the world of books and philosophy—inspiration that changed the course of his life.

Like Siddhartha, my father didn’t believe in doctrines, wasn’t in awe of intelligence, and placed no one above himself. Just as Siddhartha tells Govinda, “love is the most important thing in the world,” this is how my father oriented his life. When asked about his faith, his standard answer was: “I go direct.”

Locally renowned for his verbose, extemporaneous dinner grace, and thoroughly undaunted when we’d jokingly say “Amen” in the middle, this next poem captures a snapshot of my father’s spiritual life and leadership.

Wife of a Preacher Man

Your husband

Does not go to church;

He goes


And every night

He directs us—

To feel grateful.

“Lord, thank you

For all the wonderful blessings

Of this life.

Thank you

For this beautiful day

And for this food before us.

Lord, thank you

For our friends

And neighbors;

Thank you

For the fun we have

And the love we share.

Lord, continue to guide

And steer us

In all our endeavors

And we

Will be of good cheer

And make a joyful noise

Unto you.”

And so we do.

Imagination, compassion, enthusiasm, wisdom—yes, Materials on Hand is an example of all these qualities, but I still hadn’t hit upon my helpful prescription. So I tackled the last in the lineup, Think and Grow Rich. Here was more of Nickerson’s advice for self engineering a right livelihood. More reinforcement of what I’d already read. Until I got to chapter 11, the tenth step—The Mystery of Sex Transmutation. Bingo! Sex and romance. Now that’s something anyone can relate to and practice with relative ease, even in the midst of dementia. I’d found my practical and achievable prescription for transformation.

I used to tease my parents that I was going to get them invited on Oprah; that they didn’t begin to appreciate how uncommon their sustained passion was in our modern age of sexless relationships. Sex and romantic love are a predominate theme in Materials on Hand—not surprising given that my parents had always touted their mutual affinity for sex as the foundation of their lasting, loving partnership and the happy, successful life they shared.

This next poem is titled, What a Wonderful Life. In this poem I learn for the first time that I was conceived in the kitchen one night after a party. The only detail that needs explanation is my title as the tall girl in the kitchen. In the beginning of my mother’s decline, before we stopped consulting the doctor and we took her off almost all of her medications, she would ask my father every time I visited, “Whose that tall girl in our kitchen?”

What a Wonderful Life

We were not talking

About sex

So we laughed, when out of the blue

You told us—

“No screwing in the kitchen,

That’s not nice!”

My father smiled at you


With a twinkle in his eye—

“Have you ever screwed in the kitchen Lesley?”

You returned his sly smile

With one of your own

Your answer

Rolling out playfully slow—


My father winked at me—

“That’s how you got to be

The tall girl in the kitchen

—It was meant to be.”

He looked back at you—

“What a wonderful life.

We made a lot of great love

Didn’t we? We still do.”

You beamed back at him—


We’re good love makers.”

Is talking about sex appropriate at a Sunday service you might ask? According to Hill, and countless others, including entire cultures, sexual energy is nothing short of sacreda vital, mystical force essential to our physical and psychological wellbeing. Desire for sexual expression, as Hill points out, is by far the strongest and most impelling of all the human emotions. When combined, sex, romance and love can drive man to heights of super achievement. Hill goes on to explain how the human mind responds to emotional stimuli that act to raise or lower its vibratory rate, and in the case of sex, romance and love, the higher rate of vibration achieved establishes a state of mind associated with creative imagination. Creative imagination, Hill and others tell us, is a direct link between the finite mind of man and the Infinite Intelligence of the Universe.

“When motivated by this holy triumvirate, no form of labor is burdensome because even the most lowly form of effort takes on the nature of a labor of love.”

If getting my mother to eat was difficult, getting her to take her pills verged on impossible. Day in and day out, this task required the patience of a saint combined with the devil’s ingenuity. A burden my father turned into his labor of love.

Good Medicine

Your husband doles out

Your pills

This morning

And explains each one

As if the routine

Were new.

“This one

Is for your heart;

And this one is a vitamin.”

He modulates his voice

Smooth and enticing;

You do not like

Taking pills

So he asks you

If a kiss with them would help.

Not falling for his tricks

But following his lead

You smile coyly

And reply

“I’d rather

Wrap up with you in bed.”

He kisses you

And laughs

Then asks

“Would you like another

Little kiss?”

Drawing out your answer


You pucker up and wait.

In case it’s not self evident, I should probably point out that there was not technically any sex occurring at this stage in my parents’ relationship. Most evenings if my mother hadn’t fallen asleep at the dinner table, she would fall asleep on the couch. She snored like a freight train and eventually my dad would gently wake her and say some variation of, “Sugarplum wouldn’t you rather snore in bed?” He, or both of us if I was there, would lead her back to their bedroom, where we would warm her nightgown in the dryer for a few minutes, undress and put her to bed, then rub her feet while she fell back to sleep. My father rubbed my mother’s feet religiously every evening for ten minutes even though she’d fall asleep in two.

What my parents did share, in addition to their love, was romance. And as this poem illustrates, they maintained that bond even in the face of the challenges dementia presents.

Modern Romance

Your husband

Walks into the kitchen

Shaking his head—


Taking a shower

With someone

And having them ask

—What’s your name?

Romance. Do I really believe that sexual expression and romance can alleviate the trauma of dementia for either the individual suffering or their caregiver? I do. There are three primary challenges that come with a diagnosis of dementia and romantic love offers a palliative potential for each.

First consider that a diagnosis of dementia elicits a tremendous sense of fear and uncertainty. On an existential and emotional level, you know that your self awareness is going to dissolve and you, as you know yourself, will no longer retain agency over your own lifepossibly for years. In my mother’s case, and as is most often the case with Lewy Body Dementia, you will also have to contend with confusing and threatening hallucinations. As a physical reality, we know that persons with dementia often experience extreme disorientation, including their perception of space and physical safety.

Healthy romantic lovebeing two facing the world instead of aloneaffords us a sense of safety. Someone has our back, and we have theirs. My mother experienced a lot of anxiety, especially in the beginning, and my father creatively deflected her meltdowns with his romantic attention.


Helping my father dress you

This morning

You were working up

To a good cry.

You began with a

Distressed and pitiful


”Oh! Sweet mystery

Of life

At last you’ve found me.”

Your husband

Began singing

A joyful baritone

And leaned in for a kiss.

“That’s the song

You were going to sing


Also attendant to a diagnosis of dementia are profound feelings of grief and loss. In my talk at the Cooperage, I explained how there is a pivotal moment in the narrative where my father and I reframe our experience, and our experience changes. One evening my father confesses to me that he is losing his will to live. Up until that point, he had been focused on my mother’s disease, its demands, and the fact that the life they had shared was being stripped away by her illness. With that conversation, he made a decision to move from his head into his heart and refocus his attention on my mother as his bride. A conscious choice to fall in love with her all over again and to find fulfillment in that love. 

My parents actually renewed their vows. It was my mother’s idea. My father walked my mother up their lane at least twice a day to keep her moving, and on one of these walks she tells my father that she thinks she’d like to get married. He said sure, and figured that was that, but she continued to bring it up, so my father arranged for an impromptu ceremony. He asked one of his good friends, whose qualification was having attended seminary school in his twenties before becoming an engineer, if he could perform a ceremony; and invited another couple to serve as my mother’s bridesmaid and the photographer. On the chosen morning, he got my mother all slicked up, as he liked to say, bought her flowers and put together a luncheon for their small party. The degree to which my mother understood what was going on is questionable, but my father—and everyone in their community that heard about it—was moved.

Since my mother had a penchant for hiding—which meant losing—anything valuable, including her wedding ring, my father took one of her costume earrings and fashioned a ring for her. All that next week, friends stopped by to congratulate her and like a new bride, she’d proudly show off her ring.

This next poem is titled, The Jury is Still Out. This is a story about dementia, so comedy is to be expected.

The Jury is Still Out

The word is out

About your marriage

And a friend stopped by

To say congratulations.

Like any new bride

You beamed

And showed her your ring.

But then you voiced your doubt—

“I’m not sure

If it’s going to work.”

This poem comes much later in the narrative, but I’m slipping it in for the additional levity.

Spoken Like a Modern Woman

At breakfast

You asked the group—

“Does everybody

Have a partner?”

Your husband answered—

“I sure do!

I have a beautiful partner.”

He asked you then

If you do?

And you answered


He wanted to know

If you’d like one?

You wanted to know—

“Do I have to clean up

After him?”

Another significant challenge that comes with dementia is boredom for the one whose mind is no longer capable of sustained focus, and tedium for the caregiver. Is there anything more exciting and enlivening than sexual desire and romance? As Hill accurately points out, the desire for sexual expression turbo charges our potential and revs up our imagination, making everything more interesting.

This next poem is one example of many illustrating how my father turned the tedious task of caregiving into romantic play and my mother responded—delighted by his attention.

Mrs. America

There were

No tears

This morning

—You were animated

And full of yourself.


Helped you dress,

And when you entered

The kitchen

Where your husband


He made his usual


“Don’t you look



Here she comes”

He breaks into song—

“Miss America!”

You strut

In slow motion

Wiggle your hips

And confidently

Inform him—

“It’s Mrs.

Mrs. America.”

Your husband

Kisses you

—And you pretend

To tremble.

My parents had always been demonstrably affectionate with one another, but as my mother’s disease narrowed their world down to just the two of them, their romance became as goofy and playful as any new couple’s. The fact that my father was still taking my mother to dinner parties right up to the end is remarkable in itself, but his decision to dress her up for halloween is pure inspiration!

I should insert here that there are several moments in the book where my mother decides that either she’s pregnant, or that I am.


You’re going to a dinner party

For Halloween—

Your husband

Is selling snake oil;


He’s decided,

Will be nine months pregnant.

This morning

Over breakfast

You tell Vickie—

“I’m just doing

What I’m told.”

Your husband


“That’s a first.”

He tells you—

“If you like it,

It was my idea;

If you don’t,

It was Page’s.”

Then he asks you—

“Whose idea was it?”


Your deadpan delivery

Is not

A dead giveaway

Of anything—

And I wonder

How the old you

Would feel

About your costume

If she was

The new you?

Would she

Be willing

To break her mold

—And have fun too?

This is a two part poem and this second half confirms Hill’s assertion that the desire for sexual expression is the strongest human impulse—innate and enduring; it doesn’t leave us, even when our minds do.

In Character

You brought

The house down

When you arrived

At the party


Then you stole the show

When asked

At the table

If you wanted

A roll;

You wanted

To know—

“With who?”

Romance can also address the practical concerns of dementia like mobility, and in my mother’s case, focus. Getting her from point A to point B could feel like an exercise in herding cats as her attention drifted from one thing to the next, none of which had anything to do with what you wanted her to do. My father would take her in his arms and dance with her in the direction they needed to go—the cha, cha; the rumba; a waltz. And of course, dancing is a form of sexual expression that quite simply—feels good. 

You Could Have Danced All Night

When your husband

Helps you stand up

From the dinner table,

He asks you

If you’d care to dance.

You shake your hips,

Wiggle down low

And kick your legs.

When the song ends,

You tell him

You want to keep dancing.

Three songs later,

You smile and whisper—

“That was really fun.”

In my talk at the Cooperage, I stressed the importance of recognizing and taking responsibility for our stories and how they shape our experiences. I wasn’t talking about positive thought philosophy—at least not consciously; I hadn’t gotten to that yet—I was drawing from my experience working in marketing and the empirical evidence behind the power of storytelling. In the collective narrative, dementia is considered one of the worst things that can happen to a family. But is it? When we stopped following the expected script and wrote our own, my mother’s illness became an opportunity—transformational; creative.

Years ago, my sister took me by surprise when she said to me, “You’ve had one lousy thing happen to you after another and you just keep smiling and calling it all experience.” Would I willingly sign up for any of my heartaches? Of course not. Nor would I trade one moment of them either. This wasn’t one of my father’s quotes, though he had his own version, but I love the African proverb: “If the mountain were smooth we couldn’t climb it.”

When we wrote my mother’s obituary, we asked people, in lieu of flowers, to hug someone and tell them how much you love them. My father who was a paragon of health and strength—he had Lance Armstrong’s heart rate and had never taken so much as an aspirin in his adult life—died almost a year later. Was it the caregiver’s toll? Or the desire to be reunited with his bride? Whichever story you believe is a matter of choice—it always is; so choose well. That’s what we did. And that’s how we did it.

His Quest

Like every morning

Your husband finishes

Making and serving

Your smoothie;

Cutting a plate of fresh fruit

Buttering and warming

A pastry.

He cleans up

And joins you at the table

With his blood pressure cuff.

Delivering variations

Of the same line—

“Good morning

This is Dr. Nolker

Have we met before?

Have you been taking

Your pretty pills?”

You interrupt him

This morning—

“Two things

You made up.”

Your husband

Cracks up.

Perfectly calm

You reply—

“I’m helping you

Along in you quest.”

“My quest

Is to follow my Dream

My Lady

To follow my Dream

To you.”

You smile—

“That’s right.”