Veronica's Garden

I originally started this blog to promote my novel, Post Rock Limestone Caryatids. Now I write essays and poetry about everything, including the Flint Hills, healing, parenting, etc. WARNING: emotional content, sometimes intense. Read at own risk of feeling.

Tag: dementia

To My Demented Friends

Sunrise Over Pond

a few seconds later

To the man who filled his basement to the ceiling
with boxes of meaningless things, because
“There’s money down there,” and
to the woman who said there had
formerly been a hill behind the house,
“. . . but it’s gone now . . .”—
I too live with unfathomable sense of loss,
a pool too deep to swim to the black depths.
Struggling to get to the bottom of things
(“Bring the darkness to light,” she said,
“not the other way around”) and desperate
to rise to the air. I’m not afraid
of the darkness down there, but I am afraid
of drowning.

Disintegrating. Flash Fiction

I’m supposed to go somewhere, but they took the suitcase. I tried to make one out of calendars and feathers, but nobody took the garbage out. I don’t know how she can live down there with all that. The drawer is stuck. Someone stole it from me. No, not the scissors, I can’t reach it. It’s time to go, but I don’t have enough light. Where did they put it? There used to be a house, but it’s gone now. Where did she go, the one with light around her head? She had a beautiful door. There was something important, I need to remember.

Thanks to Julia’s Place for the 100 Word Challenge for Grown Ups, and the prompt, “. . . I need to remember . . .” Go to the blog to see how other people have interpreted the prompt.

What’s Left After the Mind Dissolves

The kids are back in school, and I have whole mornings in front of me, days at a time, so I’ve been spending more time at the computer, but I’m not finding in myself the slightest desire to write. The book is done (except for that one tiny little thing, and the one tiny little thing I’ll think of as soon as I do the previous one tiny little thing), and I’ve been doing the (not) surprisingly time-consuming tasks one must do when self-publishing. But I’d hate to for you all to go without something to read for yet another weekend, so here’s a little something I’d been meaning to put up one of these days. I wrote it several years ago to submit to some free magazine who never replied, and though it’s not my most searing truth in this present moment, I can’t find anything I disagree with.

I should note that my mom has been gone now for almost three years. She was obviously still living when I wrote this.

Leona Creager, at the nursing home where she lived her last few years.

My mom has Alzheimer’s disease. She’s had it for many years, starting long before we even suspected a problem. It began with forgetting the names of people she didn’t like. She did that for years, while functioning otherwise as a very normal, capable, highly intelligent and organized person. Then it was names of anyone, including people she did like, tasks she didn’t want to do, tasks she intended to do whether she wanted to do them or not, and it went on from there.

For a long time she could cover quite skillfully. She was probably doing it longer than we thought. She could rationalize any strange thought, make polite conversation by asking questions of a person, fabricate entire stories about a past no one really could verify anyway. Sometimes she had an uncanny knack of giving me the advice I needed to hear, as if our mother-daughter roles had not come to a reversal, as if she had any idea what she was even talking about. One time I went to her house, troubled about I don’t even remember what now, and out of nowhere she said, “I used to think that I needed to be what other people wanted me to be, then I learned that I just need to be what I want to be.” It was startlingly applicable to the moment.

As of this writing, she barely talks. I don’t remember the last time she addressed me, or anyone else, by name. A year ago, when asked to sign her own name on a birthday card for one of the other residents of the facility in which she lives, she struggled for several minutes, fretting, writing a letter every now and then, pausing to think, and in the end what she wrote, instead of “Leona Creager,” was “Loner.”

And this is how this disease works. Like a moth-damaged sweater, barely perceptible holes grow until you can put a finger through, then you notice more holes, then the fibers lose all integrity and the whole thing falls apart. Along the way, there’s this interminable period of dissipation. Memories disappear, vocabulary disappears, the conceptual framework that one uses to define one’s world disappears.

For many people with Alzheimer’s, there’s a period of anxiety and paranoia. Some spend entire days looking for things, without any idea what it is that’s missing. Some think people are stealing from them. My mom would go on long rants about my brother’s wife’s father, or about a colleague of my Dad’s at a University where he was a professor forty years ago. I’m sure this is a result of losing one’s mind, literally, but I also can’t help but think that, for my mom, it is an old habit revealed, like the bedrock left after vegetation dies and topsoil washes away. She was a critical thinker, exceptionally skilled, even wise, at seeing through people’s motives. She had worked in advertising, and would automatically point out whose interests were served by any ad she saw. So, to me, it appeared that as other aspects of her personality dissolved away, what was left was paranoia.

Watching this process, I wonder, what of me will be revealed as the landscape of my mind erodes away?  Who will I be, when I can no longer remember my name? What habits am I quietly cultivating today that will scream out their presence in the absence of personality?

Let’s assume we have a choice. There was a period when I used to think, if I practice it a lot now, when I’m losing it I can slip into an obscenely vulgar ditty I heard on a cassette tape my husband bought at a truck stop once. That’s just my absurd sense of humor. It would be a joke that even I would be too demented to get.

Maybe because I’m past forty now, I feel a need to get down to business and pick something real. What idea or concept is worth making so much a part of my life that it becomes my most enduring nature? If I could choose my last words, what would they be? If I had to distill everything I believe and stand for down to one word, how could that be possible? Is there one word that could speak to any moment, any person, any time? That could stand the test of interpretation? One word that, whatever one might say about it, can, when spoken alone, speak for itself?

What one word could I begin today to meditate upon, to repeat to myself before I fall asleep at night, to speak aloud often enough to engrave it upon the bedrock of my being?

The only word I ever come up with is PEACE. And boy, do I have a lot of work to do. I better start right now.

The Disappearances

Stories disappear. Maybe if you went to gatherings of most families, you’d get a sense of stories being retold and perpetuated for generations. Mine isn’t like that, and even for those people, there must be countless stories lost for every one told, for every one which survives to the next generation. In our family, my Dad was unable to speak or write for the last twenty years of his life, and my Mom’s rickety mind was unreliable for the last ten or so, prone to such nonsenities as “There used to be a hill behind the house, but it’s gone now.”

One story she often told was about her mother’s funeral. Her mother, Dell (from whom I received my middle name, Adell), was an imposing figure, who Mom said might have been a social worker if she’d lived in modern times. Instead, she did the work informally. If people had marital problems, for example, they might send for her. She would tell her youngest daughter, Leona, to bring a book or toy, and they would go to the couple’s house, where Leona would sit in another room playing quietly while Dell would help them work out their problems. She kept a big garden, and she would take food to sick people. In the desperate thirties, when young men were often vagabonds, Dell would give some work and a meal to anyone who knocked on the door, and she would make them write a letter to their mother while they were sitting down. When cancer took her life, so many people came to her funeral that loudspeakers had to be set up in the yard for the people who couldn’t get into the building.

Leona was thirteen at the time. After the funeral, the family had a meeting in which they told Leona that she would have to take care of herself now, that her six living brothers and sisters (only one still at home) and her father loved her but would be unable to take the place of her mother. She would have to keep herself out of trouble.

I heard this story dozens of times. How much of it is true? I have no idea.

Once, when the light was dim, but she could still talk, I took her to a medical appointment. As we sat in the waiting room, I started talking about past-life regression, and how other lives one has lived relate to the purpose of the current life. I could do that in that period, because her critical faculties were weak enough that she would never make the judgments she would have made when she was in her right mind. Instead, she listened politely, then told me that her life had been unfairly easy, so much so that she sometimes felt guilty.

“But your mother died when you were young.”

“Well, yes.”

“How did it feel?”

“Well, it was hard.”

Tears began to well up in my eyes. It was the closest she’d ever come to expressing her feelings about this event, which had happened some sixty-five years previously. I had an insight, that even through dementia, healing can occur. She never would have said that when she had all her faculties. She was too much in control. Now her mind was so ravaged that she had no controls to hold back all the hidden thoughts and feelings. Then the nurse called her name, to take her to see the doctor.

Here’s a picture I found in my Mom’s dresser, in the drawer with the jewelry, the two-dollar bills, and the silver dollar from the year she was born (1925). She was still living at the time I found it, but her mind was gone. I don’t remember her ever showing me this, or telling me anything about it. But the inscription, “To Mother, Christmas,” tells that this was likely the last Christmas gift this smiling girl ever gave her mother. After her mother died, she kept it hidden for sixty-five years.

But there’s more untold story here. Why did I take the photo out of the frame? I don’t know, but I was surprised nonetheless to find another photo hidden behind the smiling girl, of a handsome, smiling, young man. Who is he? My sister and I guess that he was Mom’s eldest brother, Will Craft, who died before she was born, in the flu epidemic of 1918. We know nothing else about him. When I once asked Mom about him, she told me that by the time she came along, they didn’t talk about him much anymore. His stories were already lost, leaving nothing behind but possibly a tiny photo, hidden away for two generations.

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