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Pete's Story
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Pete

Distant Thunder
 
“When I was younger I could remember anything, whether it happened or not, but I am getting old, and soon I shall remember only the latter.”
 - Mark Twain

The night of October 9, 2002, Thursday, I lay in bed watching television, flipping from channel to channel not finding anything of particular interest; just more rumblings about the possibility of war with Iraq. Three days before I’d turned 57, noting in my journal: 

God, how could I be so old! It doesn’t seem possible though I feel it  I’m tired, worn out too much work and traveling. 

I bounced from one TV program to the next, finally landing on the Nebraska Educational Television channel where a program exploring “early-onset Alzheimer’s disease” was just beginning. The guy they portrayed on the program exhibited some of the very same problems that I had begun to experience: not being able to remember where things were in the kitchen, i.e. which cabinet or drawer they were in.

I turned off the television, took some deep breaths, closed my eyes, leaned back on the couch, and let my mind go blank. I tried to relax, not to think about what might be happening to me; but it was there, like the sound of distant thunder, lurking on the horizon. I knew something was wrong, had sensed it for sometime, and it was beginning to scare me. 

For example, back on August 8, 2002, I’d written in my journal:

I worry now and then about what’s happening to me mentally I have more and more instances where I just cannot visualize spatial geography, can’t see in my head the layout of streets, sense directions, or remember what particular  intersections look like.

And later that same month I’d written:

When I try to visualize my parents and my life with them, my growing up the life of our family, it is all hazy and vague. Their images are fuzzy,the happenings obscure, the flow of things lost. Just bits and pieces, fragments left of the day-to-day that was our existence, our life.
I wonder sometimes, if I really worked at it, if I could retrieve it, recover those images and stories that seem to have faded into the mist of time. Sometimes Jane (my sister) will tell me things we did that I know are true, but the actual memory of which is lost; I can’t pull it up, can’t piece it together.

I got up off the couch, wandered into my office, and sat down at my desk. There I picked up the birthday card my 15-year-old daughter had handcrafted for me. On the inside cover she’d printed:  “Happy Birth. Day. I hope you had a wonderful day! I love you so much! I couldn’t ask for a better dad…you’re great. I love you. Mary.” 

That brought a smile to my face. I opened my desk drawer and pulled out the Father’s Day card from her that she’d given me back in June. On the front cover it read:  “It’s Father’s Day!!! I got you a card!!!” On the inside cover it read:  “This is the inside of it!!!” And there, in her block printing, she’d written: “Dad, Happy Father’s Day! You’re the greatest father! I love you so much! Thank you for everything. I’m so glad you’re my Dad!  I love you! Mary.” I took a deep breath, closed my eyes, smiled, and let those words sink in and, slowly, the “Alzheimer’s anxiety” faded away.

It had been over nine years since Mary’s mother and I ended our almost 10 year marriage, and almost two years since my seven year relationship with a local mental health therapist ended with her leaving because of our fights. I had ended an on-and-off affair with a woman whom I played volleyball with, a local mortician who was married and had two young children, and Vi, my future wife, and I were beginning to take the first steps into our relationship.

My life was quite frankly a mess, and I was an emotional wreck. And, my work was no less a nightmare. I had left state government a couple of years before; taking a position with the Nebraska Humanities Council, naively thinking that somehow that would connect me to the literary world and launch the writing career I’d been fantasizing about. It hadn’t. For sometime I’d felt a growing uneasiness at work but couldn’t quite put my finger on it. For example, back on July 28, 2002, I noted in my journal:

Meetings with my boss leave me with this awful tension, this feeling of I don’t know what. 

In fact, it had become troubling enough that I’d begun looking for a new job.

Other than the memory glitches and my growing discomfort at work, October had started off nice. Mary gave me a book, "Rodeo Queens and the American Dream," for my birthday, October 6, with a sweet note in the front cover: “Dear Dad, Happy Birthday. I hope you enjoy this book. It looks like a good one. Thank you for everything. You’re a great dad. I know I haven’t been the best lately, but we all make mistakes. I love you very much! Mary.” So, I was feeling good, loved and supported. In late October, however, I had another memory symptom. I misplaced or lost my checkbook and had to have the bank create a new account and issue me new checks. 

Throughout November things continued to be stressful at work and problems began to develop at home. I was more and more anxious about everything, to the point of wondering if I, in fact, had an anxiety disorder. Things were stressful at home. It also was a month of more tension between Mary’s mother and me. Somewhat by accident, I’d found out that Mary was overdue for her dental check-up. It turned out that the dental group was refusing to see her until her mother paid some $800.00 in overdue dental bills. So, I made an appointment for her guaranteeing to pay and allowing them to put it on my bill. 

On December 14, 2002, the day after Mary turned 16 and got her provisional driver’s license, I noted another memory glitch in my journal:

All day today, I’ve experienced my geographic dementia I just could not picture where to go for the Christmas trees to Yonkey Pines it was like my mind was blocked, like I would run into a wall when I’d try to visualize where to go. And no matter how hard I concentrate, I couldn’t recall the image of where it was located, couldn’t remember the name (Hickman) of the town it was south of. I finally looked at the map but then still wasn’t sure. I finally figured it out and we found it. What’s happening to me? 

I’d already had my share of health problems, back in March of 1995 I’d gone through angioplasty for heart problems. Two months later, I had a heart catheter and bypass surgery, and I wasn’t, quite frankly, up to facing more. 

I spent Christmas Eve alone; Mary was off in Colorado with her mother and Vi was spending the evening with her kids. Mary had sent me an e-mail greeting before she left, and I read it over and over again as I sat alone in my living room. It was titled “Seven Wonders of the World” and recounted a story about students being asked what they thought were the present Seven Wonders of the World. 

As the story went, the students rattled off things like Egypt’s Great Pyramids, Taj Mahal, Grand Canyon, etc. However, one student, a “quiet girl,”  held back and when asked by the teacher said:, “I think the Seven Wonders of the World are: 1. to touch 2. to taste 3. to see 4. to hear 5. to feel 6. to laugh and 7. to love.”  I thought that was sweet and it, of course, lifted my spirits. The fear and anger about what was happening to me, both mentally and at work, just drifted away, and I was filled with that sense of wonder and gratitude that only a parent can feel; a sense that you’ve been given the greatest gift in all eternity. And I had; her name was Mary Elizabeth.

When Mary returned from her trip on the 30th, I surprised her with her very first car, a 1989 Chrysler LeBaron, a one-owner vehicle with 94,000 miles. It cost me a whooping $2,350. It was a deep maroon color with leather seats. When I showed it to her, she got tears in her eyes and a big smile on her face and said, “Is it mine, Dad?” I smiled, nodded and handed her the keys. She got in, and I walked around and got in the passenger side. Slowly, tentatively, she drove it around the neighborhood with a beaming look of pride on her face, but with a seriousness of attitude, in part I think to convince Dad that he’d made the right decision.

A few days later, I got an e-mail from a woman I’d obviously had some connection with in the past, but couldn’t remember her or our connection. It was one of those inquires, a feeler, which was clear an invitation. And while I was flattered, it made me a little uncomfortable, sort of like an invitation to dance with the devil, and I passed.

In mid-January 2003, Mike, Bruce, Tim and I, the “hunting crew,” headed down to southern Oklahoma to hunt ducks and wild boar.  This was a new adventure for us. We’d been mostly what you might call bird hunters: pheasant, quail and turkey. And, while we’d done a little deer hunting, this wild boar thing was a new thing. Only one of the guys, Tim, got a hog; in fact, none of the rest of us even saw one. It was, however, a pleasant, albeit strange, experience. Our hunting hosts were on the far side of redneck and while the pigs were wild, it seemed a little like hunting farm animals. Still it was nice to get away with the guys and to wander some different country.

In late February, I participated in a reading at the Center for Great Plains Studies for a newly released book, "Rural Voices," a self-published piece by a rural high school student, which included a few of my poems. I read the following poem:

  SO IT GOES  
  A dusting of snow
  Highlights deep green winter wheat,
  A bough of bright yellow leaves
  Frames a fading blue sky,
  A town
 Clings to the hillside,
  A cold breeze
  Drifts across the land.
  Tall white sentinels,
  Stuffed with unwanted grain,
  Stand guard
 Over rusty ribbons of steel
  That run westward,
  Leaving town
  Like so many others
 Have over the years.
  Giant Cottonwoods
  Cast afternoon shadows
  Over faded seed and feed signs
  While grain dust and road dirt
  Share the air
  With the silence of boarded windows
  And the creaking of abandoned swing sets
  That move lazily in the breeze.
  Streets,
  Vacant,
  Cracked and worn,
  Turn to gravel,
  Then dirt,
  Running away into the sunset,
  Marking off unplowed fields,
  Assets of a bank gone under.
 
  Houses,
  Old,
  Gray and worn,
  Mostly empty,
  With unkept yards,
  Recede,
  Shrinking
  From bright red "For Sale" signs.
  A tattered gray cat
  Wanders from porch to porch,
  Crossing the church steeple's
  Long black shadow
  That creeps down Main Street,
  Running back to peeling white paint,
  Dust laden pews,
  And empty collection plates.
   
  A few pick-ups,
  Mud splattered,
  Line the curb,
  Like cattle at a feed trough,
  Staring into dark storefronts,
  Whose windows reflect
  Fewer and fewer comings
  And more and more goings.
  
  The only sounds...
  The rustling of leaves on old brick streets
  And the faint talk of weather
  That drifts out of the tavern
  Where gray stubbled faces
  With farmer tans
  And sad, weather worn eyes
  Blankly search the Hamm's beer sign.
 
  Rolled up coveralls
  Hover over old scuffed boots
  That shift with discomfort
  At the mention of foreclosure
  While empty beer cans
  Stand as monuments
  To faded dreams
  And better days.
 
  In each other's faces
  They see the weight of years,
  Survivors
  Or hangers on,
  Not sure which,
  Or if it matters;
  Together,
  They share the passing of a way of life.

 While the poem had been written about the farm crisis of the 1980s, it seemed oddly symbolic regarding the symptoms I was beginning to experience.

Later that month, I provided two local authors, Jonis Agee and Yvonne Hollenbeck, photographs for the front covers of their forthcoming books, "Acts of Love on Indigo Road" and "Where Prairie Flowers Bloom," and one of my photographs graced the back cover, “Last Look,” of Nebraska Life magazine. And, while all that was good for the ego, it garnered me no new income, and I had little hope of being able to make a living at either photography or writing. I was still stuck at the Humanities, at least for the foreseeable future.

On Friday, March 14, 2003, I went rollerblading on the bike trial while Vi followed me on her bike. The weather was beautiful, a nice spring afternoon. But when I got home, I didn’t feel good; had a dull kind of ache in my upper chest, arms and jaw, and a queasy stomach. And, when I’d been rollerblading, I’d had a little tightness in my chest and aches in my jaw and back, especially when I was going into the wind. 

As the sun set, and the light faded from the sky, I felt worse. By 8:30 p.m., I was nervous enough that I had Vi take me to the emergency room. They kept me overnight, hooked me up to IVs and various monitoring devices, and began a series of tests and examinations. As I lay in bed, I started to write a poem about what was happening. By the next morning, they’d ruled everything out and it was all a false alarm. Maybe I was just stressed from work or anxious about all the upcoming changes, it’s hard to know. While waiting for my discharge I finished up the poem I’d started earlier:

The Waiting
  
I guess it’s resignation
I feel,
A dullness
That matches the sharpness
Of the nitro pain
Above my eyes.
The hospital room,
Bright with morning sun,
Is heavy with the weight
Of uncertainty
And the quiet
Of waiting.
Once again
My heart is talking,
Complaining,
Acting up,
Warning me,
Asking for help.
Once again
I look for miracles,
Search for hope,
Practice denial,
Push away
The fear.
I tell myself
It is better to know,
To seek the truth,
To know where I stand,
To deal with it;
But I don’t really believe it.
My heart
Wants innocence,
Denial,
Avoidance,
The old head in the sand
Cure.
I don’t really feel that bad,
No chest pain,
No jaw ache,
No nausea,
No sense of sickness,
At least not now.
The real fear hasn’t found me
Yet,
But it will come,
Come with the procedures,
Come with the words,
Be reflected in the eyes of nurses.
Will this be
Just another repair,
A visit to the shop,
A fix
Or Something worse,
Much worse.
 
How will I
Be able to count
My life?
Decades, Years,
Months, Days,
Hours, Minutes?
How will my life
Be changed?
Will I miss work,
Be able to run?
Need help
Recovering?
Nothing,
They’ve found nothing,
Nada,
A false alarm,
I’m OK!
RELIEF!

As I lay in bed, waiting for Vi to come get me and take me home, I wrote:

  Now there is a sense of peace
  As if I’m floating on a river
  That winds its way into the future;
  Just drifting along, content,
  Holding the gift of life and hope.

When I got home, I had a sweet note from Mary: “Dad:  I’m glad the tests went well. And I hope you get good rest! I love you so much! Sorry I’m not here. I went to a movie…I might come over later! I love you! Mary.” And sure enough, Mary and her friend Page came by for dinner later that night.

The next day, resting at home, I still felt out of sorts. As storm clouds gathered on the western horizon, I jotted down what would become the first couple of paragraphs for the photo essay, “Rainbows,” I was working on for Nebraska Life magazine:  Nebraskans are used to seeing weather. We see it coming far off in the distance; clouds piling up, towering thunderheads massing on the horizon, lightening flashes connecting earth and sky, wetness on its way. 

We see it before we hear or feel it, the darkness marching toward us like an invading army. It is only when it is upon us, when it has arrived, that we hear the crack of lightning, the rumble of thunder and the pitter-patter of rain drops; feel the pressing wind, the dampness in the air, and the wetness of rain. Here, in the great openness we call the plains, we have the gift of anticipation, the ability to enjoy weather on its way, to reflect before we are consumed.

It is, however, more often the going rather than the coming of weather that gives us our most inspiring views. The crack between the worlds of storm and calm, the line dividing peace and turmoil, this aftermath has within it the ingredients of wonder. Here, in a magical alchemy, rays of sunshine join with water droplets to create rainbows. It is at this juncture, this moment of passage from storm to calm, that we have opportunity, the possibility that ribbons of color will sweep in perfect symmetry across the heavens. During these brief windows of time, between rain and shine, sunlight and shadow, daylight and darkness, we get rainbows.

I continued to feel oddly out of sorts and elected to stay home sick the first couple of days of the week. On Monday, I drove to Omaha for work and didn’t get home until 11 p.m. Tuesday, the 18th, I called in sick. I stayed in bed all morning. As I lay in bed, I thought about the big changes ahead. Vi and I were preparing to buy a house and move in together. I had bittersweet feelings about the anticipated transition, along with a vague sense of discomfort, and put some of those thoughts into a poem:

 The Move
 Gray skies,
A little greenness
Showing in the grass;
The bright yellow
SOLD sign
Broadcasting
My intentions.
I am leaving,
Moving,
Changing
Where I live,
How I live,
Who I live
With.
I am giving up
My window
To the world,
My cocoon coach,
The solace
Of my living
Room.
Giving up
Ten years of place,
Ten years of history;
Abandoning
A comfort space
In whose arms
I lived, cried,
Almost died.
A place of warmth,
Quiet,
Solitude;
A place
Where
Mary grew;
My home
With her.

I’d gotten up for a little bit in late morning, took a shower, put a load of clothes in the washer, and went back to bed. I, however, couldn’t sleep and lay there watching the noon TV news, which continued to focus on President Brush and the threat of war in Iraq. 

Around two o’clock, I gave up trying to sleep, grabbed a book ("Riding the Bus with My Sister"), went outside, settled into the lounge chair in the backyard and read. The sky was a deep blue with puffy white clouds. After a little while, I put my book down, settled in, and watched the clouds inch westward, sneaking across the blue.

I closed my eyes, my breathing slowed down, and my body settled in; feeling the warmth of the sun and the cool of the breeze. I’d drift off, my eyes slowly closing, and then bounce back awake to watch the limbs of the pine trees dance in the wind while the maples and oaks, still bare of leaves, swayed ever so gently, slightly. I noticed the green of the first hosta breaking through the ground and my eyes felt heavy as I thought how I’d miss my home.

Later that day, as I continued to lie in bed and tried to recover, my mind drifted back in time, back some 28 years to the summer of 1974 when I worked in Lincoln Regional Center, one of the Nebraska’s three state mental hospitals. There I’d worked as a ward charge when I was in graduate school. A vivid image came to mind of a particular patient, a Nazi concentration camp survivor. In it I saw her moving, ever so slowly, deliberately, edging along the walls of her confinement. Recalling my sense of her isolation, loneliness, I picked up my journal and began to put down those recollections in verse:

 Caring By the Numbers
  
Mostly she is not there,
A shadow along the wall,
A ghost we glimpse in passing,
An apparition,
A piece of furniture,
No trouble.
Small and frail,
Bent and blank,
She edges along the wall,
Making herself invisible,
Staying out of our way,
Hiding.
Mostly we do not notice,
We focus on other patients,
Deal with those acting out,
Demanding attention,
Needing something,
Doing our daily tasks.
But there are days,  
Days when she steps out,
Days when we notice,
Hears her,
Days when we deal with her.
Those days start quietly,
A murmuring, muffled sound
Drifting across the way,
As if the walls were stirring;
A quiet rumble,
Like the warning a volcano gives.
Slowly it builds,
Growing louder,                                                          
Until deep from within her,
A terrible haunting wail
Gets loose, echoes:
“Hellllllp Meeeeee.”
And then again, “Help me!”
A mournful, plaintive
“Help me!” 
“Oh God, help me!”
“Please help me!”
“Help me.”
Over and over,
“Help me!”
Wandering away from the wall,
“Help me!”
Crisscrossing the room,
“Help me!”
Still she doesn’t look at us,
She paces back and forth,
Desperate lurching steps,
Her gaze bouncing floor to ceiling,
Her plea echoing down the hall,
“Help me, help me, help me.”
We turn from our duties,
Turn from other patients,
Turn from charting,
Turn to deal with her,
Descend upon her,
Ask her what’s wrong.
Say it’s OK,
Tell her she’s safe,
Tell her we’re here,
Tell her no one will hurt her,
That it will be alright,
Not to worry.
But she ignores us,
Charges on,
Halting, lurching,
Stumbling, screaming:
“Help me!” “Help me!”
“God please help me!”
We are no comfort.
We are no help.
She doesn’t see us.
We are not there.
She is alone,
Lost.
We grow irritated, frustrated.
We resent our helplessness.
We are angry at her.
We feel she must stop.
We don’t know why.
We are lost.
I am the “Ward Charge,”
The responsible one,
The one who should know,
The educated one,
The accountable one,
But I am lost.
I lead the way,
We close in on her,
Block her way,
Grab her by the arms,
Pull her, drag her, push her,
Help her along, take her away.
The other patients look away,
Turn their backs,
Withdraw,
Embarrassed,
Ashamed,
As if they’d betrayed her.
Out the door
Down the hall
To her room, to her bed,
To restrain her, tie her down,
Imprison her
For her own good.
We hold her there,
The four of us,
Attach the belts,
Pull them tight,
Cover her
With cold, white sheets.
All the while she struggles,
“Help me!”
Withering in her bed,
“Help me!”
Fighting the straps,
 “Oh please God, help me.”
Then I see them,
On her arm,
Etched in pale white skin,
Rumpled among the wrinkles,
Numbers tattooed there,
Faded blue-black numbers.
 
They don’t mean anything
To me.
They just seem odd
And old,
Faded and tarnished,
Like her.
 
It’s only later,
The next day,
When I learn the truth,
Comprehend, understand,
These are Auschwitz numbers,
Hitler’s tattoo.
I feel sick,
Guilt and shame rise up in me,
I think of photos I’ve seen,
Stories I’ve heard,
Imagine what must have happened
To her.
Why wasn’t this in her chart?
I want to know!
Whose fault is it?
Why didn’t someone tell us?
It’s not our fault
We didn’t know.
But these recriminations
They are no help,
No relief,
No comfort.
The truth is in us.
We are responsible.
 
Why did we need to know?
Why must she have a reason?
Why must she have an excuse?
Why couldn’t we just trust her pain?
Where is our compassion?
Are the numbers we’ve given her
Any different to her
Than the ones the Nazis gave her?
Are we all that much better
Than they?
Are we?

I wondered where that came from and why then. Wondered what at that point in my life, some 30 years after that experience, prompted me to return to that time, place and her? Why did I key into that then, and how did I remember that when I was forgetting so many other things? Was it somehow connected to what was happening with me or what might happen to me? Was I, in some anticipatory way, identifying with her fate?

The next day, Wednesday, March 19, President Bush’s war with Iraq officially began; the first air strikes were launched. It all seemed unreal, remote. I lay in my bedroom looking out the window and watched as a cardinal flew up and landed in the tree. He hung up there for a while, head bobbing up and down, and I wrote: a nice omen, a sign of spring, a little hope.

Peter also wrote a poem in appreciation of Alzheimer's Association staff:

I Appreciate All That You All Do

Dear Teresa, Jeffery and the rest of you
At-with the Alzheimer’s Association,
Both the Great Plains and National crew;
I appreciate, appreciate all that you do.

All the education, connectivity, and advocacy;
All the support and opportunities;
That have come, come, come, come to me
Through my involvement with thee.

I can’t imagine how lonely and absent
Life with Alzheimer’s would, would be
If I hadn’t, hadn’t, hadn’t connected;
Connected, connected with thee.

I know it’s not an easy task you have
In all that you try to do day to day
Trying to be supportive and understanding
With those of us with memory sway.

But each and everyday you should know
That even though those you help and support
May, may not, not always tell, tell you so
You are making, making a difference!

So remind yourself and your crew
Of the value and importance
Of all, all, all that you all do
Both locally and nationally.

And, even though those of us that you help
From day to day may not always say so
We do, do, do appreciate all you do
In support, education, and advocacy!


 

Alzheimer's Association

Our vision is a world without Alzheimer's
Formed in 1980, the Alzheimer's Association is the world's leading voluntary health organization in Alzheimer's care, support and research.