Waggener Essay Published in “Chicken Soup” Series

Congratulations to Esse Diem friend and partner Jennifer Blake Waggener for her essay’s acceptance into Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias: 101 Stories of Caregiving, Coping, and Compassion.

Jennifer’s essay, “Fade to Black,” first appeared on her own private blog in 2006. She generously shared it with Esse Diem in 2012 for the Essays on Memory and Loss effort to support the Alzheimer’s Association’s advocacy efforts.

The book may be pre-ordered now, and is available April 22, 2014. All royalties benefit the Alzheimer’s Association.

We are so very proud of you, Jennifer!

Alzheimer’s Strikes by Laura J. Little

When I was in high school, my grandmother developed dementia.

Some people called it hardening of the arteries, some called it Alzheimer’s disease, and some called it senility. The name really did not matter; it was the devastating effects that were memorable.  We often remarked how merciful it was that Grandma did not know what was going on; it would have hurt her to know what was happening.  I was fourteen and was often asked to watch my grandmother for a short time so that my father could attend one of his many other responsibilities.

Alzheimer’s hurt our whole family, not just Grandma, and that was never more true than that one fall day when my grandmother slapped me.

I was not an abused child. When I was younger and Grandma was healthy, I would get an occasional swat across the bottom when I misbehaved or talked back. I got many more hugs, kisses, and thick slices of homemade bread with strawberry preserves than disciplinary smacks. I know that Grandma loved me. Grandma did not hit me.

Alzheimer’s did.

A chair belonging to the writer's grandmother

A chair belonging to the writer’s grandmother

It became obvious to my father that Grandma needed constant supervision. He hired a series of ladies to come and stay with her, but there were always gaps between when the “day lady” and the “night lady” came. Dad stopped by her house every day after work, but he had many other responsibilities, and someone needed to fill in for him when he had to be elsewhere. Often, I was the one who stayed an hour or so with Grandma so that Dad could bathe, eat dinner, or pay bills. I had one job: Make sure Grandma did not leave the house. How ironic it was that going home to her meant leaving the house that she and my grandfather built forty years before. Her mind was trapped in a much earlier time.The road that she traveled to get home was a rutted dirt road populated by horses and buggies and the occasional car that moved aside whenever the driver saw someone walking along the road. She did not recognize that it was seventy years later; by now the road was a major U.S. highway, well-traveled by cars and tractor-trailers that would not see her walking in the middle of the road until it was too late.

My usual strategy was to get her talking. I loved the stories she told about growing up. She talked about going to a now-demolished one-room schoolhouse, about her courting days, and about my Aunt Forrest, her lifelong best friend. She told of the horses they rode, the pigs they raised, and how the children hated Sundays because they had to dress up and go to church. They could not play the whole day long, but had to sit quietly and read. Sometimes they didn’t even read, they just had to sit. One day the quiet got to be too much for Grandma’s youngest sister, Edith,  so Edith mounted the brood sow, which of course headed promptly for a mud hole and dropped her off, ruining her Sunday-best clothes. My aunt got a well-deserved whipping, but Grandma laughed until the tears came. This is how we passed much of the time: Grandma insisting that she needed to go home, and me saying, “Oh, I’m having such a good time. Can’t you stay just a few more minutes?” On most days, she would agree and begin the next story. Using this kind of persuasion, I could usually keep her in the house until my father got there.

But one gloomy fall day, Grandma was more restless than usual. I was getting nervous, as she seemed so antsy, and dark was coming ever earlier; it was even more important to keep her off the road. She re-told a few stories, but every few minutes she insisted that she had to go home. By this time I knew that telling her that she was at home would do no good, so I asked her to stay a few minutes longer. She stood up and said,“No,I need to get home!” I jumped to try to get her to sit down, but she was too quick for me. As I held her arm, trying to keep her in the chair, she reached out and slapped my face with all her might. I was taller, but she had more than 80 years’ worth of hard work on the farm to build up her strength. There was nothing more I could do but call Dad to come and get her as she headed for the door. She was out the front door by the time he answered the call.

I had failed. This one simple task, keeping Grandma in her own house, and I had failed.

I hoped that Dad would get there before she got to the road. In the end, he did, but I cried that night. I cried for the hurt from the slap, but even more from the apparent victory of that hated disease. That night Alzheimer’s attacked me physically, yet I was powerless to strike back. The disease had hidden itself inside my wonderful grandmother, taking her body as a disguise. There was nothing I could attack; striking the disease that had beaten me would be striking my grandmother. If someone I thought I did not know tried to keep me against my will in a strange place when all I wanted to do was to go home, I would have fought, too. Since I could understand what her deteriorating mind must have reasoned, I could not be angry with her. I struck out at myself for failing.

That night I realized that my grandmother’s soul had died, to be replaced with this imposter.

That night I mourned my grandmother for the first time, but not for the last.

Laura Little holds a doctoral degree in Education and is the Director of Instructional Technology at Bridgemont Community and Technical College in Montgomery, West Virginia. She has over ten years of experience in higher education with public universities, private colleges, and the for-profit sector. She explores the common threads of these different settings on her blog, The Real Doctor Laura. This essay is the first to be a true Essays on Childhood submission covering adult reflections on a childhood marked by Alzheimer’s disease. Look for her poignant work in the Essays on Childhood project again in 2013.

The Angel of Lost Things | a poem by Jeremy Paden

Note: This poem by my friend Jeremy Paden is a beautiful , appropriate closing to this week’s essay postings about memory and loss. Thank you, JP.

The Angel of Lost Things

is not the saddest
of angels, there are times,
though, when it does
abandon all hope—

the misplaced letter,
the child who follows
the wrong pair of pants
in the holiday crowd,
the watch lost on the lawn,
taken off to play
football or Frisbee.

It knows where each
and every lost thing is
but it does not speak
these places. Instead
it keeps them close
to its heart, it worries
over them until found.

There are times,
like when an ailing
grandmother wraps
her opals and diamonds
in toilet paper taken
from a McDonald’s
restroom and in her
dementia she cannot
remember if the bundle
was left on the tray
or placed in her baggage,
when the angel knows
but cannot reach through
the haze to nudge
the faulty memory.

It understands
its sacred duty.
That all things lost
should be watched over,
that nothing—even
the books and photos
lost to fire, to mold,
the stuffed bears left
in leaf piles and taken
to landfills—are beyond
being found, recovered.

But there are times when
the levee breaks, the rivers
rise and the mud and silt
of five generations,
all the pain displaced
throughout centuries,
covers everything with loss.

Times when it would rather
be the angel of found things,
the angel that gathers
unto itself minds
and causes and children
and hearts and heirlooms,
the angel that mends
and heals and rejoices,
that leads the congregation
down the dusty road,
singing and dancing
before the altar found.

Jeremy Dae Paden is Associate Professor of Spanish and Latin American Literature at Transylvania University. He was born in Italy and raised in Central America and the Caribbean. He currently lives in Lexington, Kentucky, and is a member of the Affrilachian Poets. You can read some of his new poetry at Still: The Journal.

Poet photo credit, Jeremy Paden. Angel image credit, PhotoBucket.

Committed to Memory by Kathryn E. Brown

“Your father is homeless.”

Katy Brown

There are certain announcements in our lives, both good and bad, that leave us speechless. I want you to be my wife.  It’s a boy! You’re hired. You’re fired. Not guilty. But none has stirred my life quite as much as being told by a hospital social worker that my father was, in essence, homeless.

Nursing homeless, that is.

For several years, I was the primary caregiver for my father, who suffered from vascular dementia and Alzheimer’s disease. After a series of strokes over 10 years, my father’s confusion made the simplest of tasks nearly impossible. When his condition deteriorated into the final stages of the disease, I was faced with the unthinkable. Not only could I no longer care for him in our home because of the extreme nature of his needs and behaviors, but there were very few skilled facilities willing to accept such a severe case.

Many nursing home admissions teams quickly rejected my father’s application without much consideration. Nursing home administrators and clinicians refused to accept a mentally ill patient who was combative, angry, incontinent, unable to speak or walk, paranoid, visually impaired and deemed “a threat to staff.” With red flags waving throughout his medical records, I was left wondering how other families handled similar situations. Surely I was not alone in this fight, and surely my father was not the only man in recent time to be afflicted with the worst of all possible byproducts of dementia.

There was no time to join a support group and there was no time for talking.  I had hours to find a solution. My father and I were equally alone. The illness had robbed him of the voices, faces and memories that were so much a part of his 78 years, while “the system” as it is referred to, had abandoned me.

Only one local skilled nursing facility accepted my father directly from the hospital where he had been attempting to recuperate from another stroke. Within the first week of his rehabilitation stay, he fell six times. Shortly thereafter, several members of the nursing staff reported in a care conference that my father needed help they could not provide, despite advertisements claiming that they specialized in disorders of dementia and Alzheimer’s disease. The proposed solution was to send my father to a mental hospital offering geriatric services geared toward finding medications that would curb the unwanted and inappropriate behaviors causing problems in their nursing home.

It was difficult to decide whether my father was being punished or helped. There was a nagging fear that if I did not agree to the mental hospital proposition, then he would be kicked out of the nursing home because I, the daughter, was difficult to work with.

After several frustrating telephone discussions, it became abundantly clear that as his guardian, I was no longer in control of his care.

Eight weeks in the mental hospital produced a domino effect of problems. The nursing home that suggested this route to make him a more socially acceptable resident of their facility discharged him and released his bed. Word had spread that he was not doing well medically, and that his condition had entered a terminal state. Given the nature of his condition, it was viewed as highly unlikely that he would recover from the infections and circulatory problems, which had left him bedfast.

I received a telephone call one morning from a social worker at the mental hospital. She was curt and steely with the delivery of one line that will forever be etched into my memory.

“Your father is homeless.”

The very sound of her words made me nauseated. In no way was my father homeless. I had cared for him nearly all of my adult life. I would never allow this to happen to him.

She went on to explain that my father’s situation was dire. Due to the stigma attached to the mental hospital’s reputation, few nursing homes will accept patients with mental therapy as part of their skilled treatment. It is much easier to return a patient to a nursing home in which they still have residency than to find a new one.

My best option, I was told, would be to look into Alzheimer’s disease care centers in Ohio, or to seek admission in an end-of-life home.

Multiple rejections followed with responses ranging from “we don’t accept mental patients” to “although he is terminal, he isn’t actively dying.”

Personal care homes wrote that he was unfit for assisted living because of his required need of total care. Though no one would make a commitment that he would be kept in a care home for an extended period, monthly expenses were estimated at $6,000, not including personal hygiene items and prescription drugs.

With one last facility to interview, I was preparing to find a way to care for my father in our home once again. I wasn’t sure how I was going to manage a home-health situation with two small children to shelter from the violence of his illness. I knew I couldn’t lift the six-foot-three- inch, 190-pound man, with stubborn strength that never seemed to weaken despite his body’s degeneration.

The nursing home admissions director listened to me as I poured out the history of his illness and recent care experiences. She gave me a tour of the facility and explained the process of applying for Medicaid, should all of my father’s resources be depleted during his long-term stay. When I asked her if this meant that the facility would accept him, she nodded and told me they would care for him, and that I was not alone. Only recently, her father had passed away from the disease, and she, too, had to succumb to placing him in a mental hospital. Our stories were nearly identical.

A little over a month later, my father died of pneumonia in the one nursing home that accepted him unconditionally. The level of care was beyond my expectations in his last days. Critical care nurses checked on him every 30 minutes. Nursing assistants repeatedly asked if I wanted something to eat or drink. They brought in comfortable chairs for my family. We were given a private room that resembled a hotel suite so that we wouldn’t be reminded of where we really were.

After he passed away, I was flooded with exhaustion. The last four months had felt like a never-ending nightmare. After the funeral, I began to go through a checklist of things I no longer had to face. I no longer had to worry about the expense of his nursing care or whether a facility could manage him. There were no more worries about spending down his assets and selling off all of his possessions before government assistance stepped in. There were no more fears that someone would be rough with him if he suddenly became combative. I was no longer afraid of experimental drug treatments that might or might not help his agitation. I wasn’t afraid to hear the telephone ring anymore. Above all else, I no longer feared where he would rest his head at night.

He was home.

Kathryn E. Brown is a regular contributor to the Charleston Daily Mail. A native of Charleston, West Virginia, she is the owner of The Write Word, LLC. Her life stories have captured a loyal following, and this year she published her first book. To find out more about Katy, visit www.thewritewordllc.com or her blog at www.katybrown.wordpress.com.

The Brain Anchor by Valley Haggard

It’s not until I’m on 95, driving out to visit my dad, that I realize what to do with the fur hat tied by ropes to a cinder block in the trunk of my car, a “brain anchor” used as a prop by a friend in a surrealism creative writing class. My father not only introduced me to the world of surrealism when I was a child, he currently inhabits one of his own.

I’d called him the day before to ask his permission to write about him because, I tell him, there’s nothing else right now I can imagine writing about. Still, I feel like a vulture scavenging for blood. “Oh, of course you can,” he says, surprising me as he always does with his generosity. “I would be honored.” And then he suggests I write an even longer article for a national magazine, because people love to read about other people’s dying parents.

“But, Dad!” I say horrified. “You’re not dying!”

“I’ve had another home invasion,” he tells me. “It’s time to stop driving. I’m deteriorating, Valley,” he says.

“What kind of home invasion?” I ask, but I already know. After suffering a series of micro strokes two years ago he began to undergo a string of MRI’s and psychiatric evaluations which have turned up the words inconclusive, abnormal and dementia. 

Valley Haggard

Perhaps I’m biased, but I prefer my dad’s definition of his shifting mental state to anything I’ve found online. His first extended hallucination he described as a “cosmic, horrific supernatural freak show of southern holiness.” A tall man with lobster claws for hands and his very short 300 pound wife, who, together looked like a period and an exclamation point, were the leaders of the pack. “They were hungry and fat and wanted peanut butter sandwiches,” he told me. “I thought I was going to be killed, maybe eaten.” Between trying to beat them away with pillows and making them peanut butter sandwiches, my father called my stepmother and begged her to call the sheriff. She’d assured him it wasn’t real and asked him to hang on until she got home. “I know they’re hallucinations,” he tells me. “But the real question is, are they still there when I’m gone?”

When I sob to a friend on the phone, the gravity of the situation finally hitting home, she says, “It’s like watching a redwood fall in the forest.” And she’s right. My dad has always been fit and tall and handsome but I think it’s the largesse of his imagination she’s referring to. Growing up, he always kept an open house, an open mind and a tendency to regard the lines between reality, dreams, poetry, fiction and fact more like suggestions than absolutes. As a child, he opened up for me the world of story. Now, at 63, his mind is writing a whole new chapter.

The characters that populate his imagination visit his waking life as well. Civil War soldiers ride up to him on horse back; furry white animals streak the yard; pterodactyls soar through the house. But it’s the confusion, the memory loss and the fat illiterate family of rednecks, the home invaders, with whom he’s had to make his peace. “I’m much more welcoming to them now,” he tells me. “Which makes them go away faster. The lesson here is that no evil can stand up to humor!”

When I pull into my dad’s driveway he’s bright eyed, holding a riotous fistful of purple irises from his garden. I drive him around to do the things he can no longer do by himself and when we’re done, because I don’t know what else, other than my time, I can give him, I pull the brain anchor out of my trunk. “It’s perfect!” he says and shows me a sculpture in the front yard made of bits of metal and discarded scraps of wood. “I call it stacking,” he says. And he explains to me his new art form, one that takes on different shapes and unexpected dimensions, becoming more bizarre and more beautiful each day.

The executive director of Richmond Young Writers, Valley Haggard teaches creative nonfiction classes for adults at the Black Swan Bookstore, Chop Suey Books and the Visual Arts Center of Richmond. You can read more of her wonderful writing on her blog, www.valleyhaggard.com. This essay first appeared on her blog on May 31, 2012.

Fade to Black by Jennifer Waggener

She can’t remember the last time they met, though it was only three years ago this third of July, a hot, moonless summer night, when she’d spent the final moments holding his hand, alternately speaking to him in hushed tones and singing “Let Me Call You Sweetheart” ever so softly into his ear, her cheek meeting his where it lay on the stiff hospital pillow.

She can tell you how they met, in vivid technicolor detail; about the pouring rain that day some seventy years ago when her big brother brought him to the house, a drowned rat by all appearances. But even so, she couldn’t take her eyes off of his; they way they twinkled and danced! Just one look, and before she knew it she was following him down the yellow brick road of his dreams, into happily ever after.

She can’t remember the name of the nice lady who fed her lunch yesterday and breakfast this morning; the one who cajoles her into taking “just one more bite”; the one who brings the styrofoam cup of too sweet lemonade to her lips to wash it down; the one who is a mere child herself, but inevitably crows about what a “good girl” she’s been to eat so much of the tepid, pureed gruel that passes for a meal these days.

She will ask you, though, about your babies, and even about Ms. Stinky-son, her great grandson’s not-so-favorite kindergarten teacher. Did “that woman” ever give him back his truck? she’ll ask, recalling an incident long forgotten by the parties involved, a glint in her voice as she stands ready to defend the shaggy haired five year-old with the tear stained face of a decade or more ago, standing in living color before her mind’s eye, in its own twisted version of the here and now.

She can’t remember why she doesn’t see you everyday, or, perhaps more aptly put, that she doesn’t. Where has everybody gone? Why is she in this awful god forsaken place? She hates it here, she says, without saying a word, but still, you can read the indictment on her face. She wants to go home. Can’t you take her there? Sit on the big flagstone back porch and gaze across the river, have a glass of tea and talk about remember when? The pleading that goes unsaid is enough to break a soul in two, jagged edges still piercing and pinching long after the visit is over.

She won’t remember that you’ve been here, almost as quickly as you go. Tomorrow, today will be just yesterday, those short term memories the first attacked by the cruel, unforgiving scourge that wipes the surface of her mind clean each night.

But you’ll remember.

“I have to go, Grandma. I’ll be back soon.”

Her face turns, seeking yours.

“I love you,” you say, nearly choking on the swirl of emotion you feel welling up from the depths of your suddenly fragile heart.

Her cloudy eyes find yours, and lock there in a long, present moment.

“I love you, sweetie,” she states with all the authority of the grandmother you’ve always known. “And don’t you ever forget it.”

Jennifer Waggener says, “I discovered the world of blogging in February of 2004 and have been addicted ever since. I’ve met the most amazing people through this little hobby of mine. The entire journey has proven more rewarding, more time consuming, more thought provoking, more immensely pleasurable than I ever dreamed it would.”

Fade to Black first appeared on Jennifer’s blog on June 27, 2006. 

Image creditCover art from Twelve Below Zeroby Anthony Bukoski. Painting by Gaylord Schanilec.

Memory and Loss: A New Kind of Essay

At the end of September I celebrated the Alzheimer’s Day of Action by pledging to use memory loss, dementia, and Alzheimer’s Disease to guide the 2013 Essays on Childhood project. You can read some of the ideas I had on this post, “How Esse Diem Purples.”

Within an hour of posting my musings, I had three complete essays from writers for the project.

These essays are not drafts, or ideas for essays; they arrived in my in-box as fully formed works. Each them moved me to tears, and continue to do so on every subsequent reading. At first I was concerned that I can’t use them in the Essays on Childhood project because they break a defining rule of EOC: All essays must be written about experiences before age 18. The essays I received are written about adult experiences, but with an interesting twist. The writing illuminates the unique pain an adult feels when caring for an older relative whose mental capacity is ravaged by Alzheimer’s Disease or dementia. The unnatural degree to which the adult caregiver much switch roles with a parent or grandparent is striking. I feel as if I’ve seen something intimate and private that maybe I did not have the right to see.

And yet . . .

And yet, these writers ask us to see it. They need us to see it. Their words reflect that people they love are slowly slipping away. These are parents and grandparents to whom a debt of gratitude can never be repaid, but the desire to repay it increases exponentially as the writers witness their loved ones’ suffering. A grieving process begins before death, and one senses that even death cannot close the wounds from this kind of protracted loss.

These essays are challenging because they ask us to share something we may not want to share. In the end, I believe what they really do is give us an opportunity as members of the human family to open our hearts and minds to one another. We have a chance to better understand how families everywhere are facing a complicated situation with no easy answers.

This week, my posts will feature the follow writers:

Tuesday: Fade to Black by Jennifer Waggener

Wednesday: The Brain Anchor by Valley Haggard

Thursday: Committed to Memory by Katy Brown

I hope you will read and share these stories, and perhaps consider writing your own essay. I have created a special essay category called Essays on Memory and Loss, and ideally a collection of these kinds of stories will become valuable education and advocacy tools for organizations like the Alzheimer’s Association.

Thank you!

Image credit: The Epoch Times