I Suffer from Alzheimer’s

Ростислав Иванович Фелицин (не позднее 1820-х годов-1882) – Печальное известие (Чтение письма) (1856)

I drive home sobbing from the residence where my mother lives. Sometimes instead I rant about the injustice of a disease that kills a person before their body is dead, and kills their supporting family in fragments that leave us bleeding. Every once in a while I catch the glance of the driver next to me, shaking their head at my inattentive driving skills. I’m going to cause an accident if I don’t pay better attention. I know but still I cry or scream.

The stricken want to go home. To the house in Santa Monica or Chicago or Trenton where mommy and daddy live. They wait for their husband to pick them up except he died fifteen years ago. They must meet the school bus and walk the children from the stop even if their children have grandchildren. It’s time to make dinner though they haven’t cooked in over ten years because the last time they poured a bottle of soda into the spaghetti sauce and left the gas burner on overnight. They want to drive their car home. It’s parked outside though it isn’t, they have not driven or had a license for more than a dozen years, and no one will let them leave the locked residence where they now live. Still, they demand to go home because this place is not where they live, and you are a criminal for keeping them locked up. You no good terrible husband – wife – son – daughter. If you loved them, you would obey their demands to go home. You must not love them.

They can’t remember anything that is not a memory less than thirty or fifty years old. Certainly nothing that happened ten minutes ago. Many have no memories at all, which is why they don’t eat when they’re hungry (they don’t recognize hunger) or overeat when they aren’t (they can’t recall having eaten five minutes ago) or devour packets of sugar, pour tablespoons of salt on their food, chew on napkins, use a knife in place of a fork, fingers for their soup, or shove an entire slice of cake in their mouths as if it’s one bite. Loss of memory and confusion over engaging in appropriate daily activities are two sides of this damaging illness.

Daytime activities include playing Bingo and Wheel of Fortune, ping pong, chair exercise, singing, dancing, putting together jig saw puzzles, making collages, spreading paint, glitter, and glue in art class, watching the birds in the garden, dozing, and just relaxing. Occasionally they laugh. Some activities earn pretend money. They shop at the residence store where a few “dollars” will buy magazines, jewelry, sports hats, note cards, scarves, crossword puzzle books, gloves, wallets, socks, handkerchiefs, photo frames, pens, sunglasses, playing cards, and snacks like granola bars, cookies, crackers, or miniature candy bars. The most expensive items are the snacks because it prevents them from over eating junk “food.” Some of the residents walk. Walk and walk and walk and walk and walk. Yes, it is like that for some. They cannot sit or stay put for more than a few minutes because they have important things to do, places to go, people waiting for them. They are busy with activities.

They converse though it’s difficult for me to follow muttered conversations, rambling words, or disconnected thoughts. They smile at compliments and say they love you. They pause when you talk to them, nod at your suggestions to get out of the hot sun, or to watch the day’s entertainer. Then they ignore your words. You don’t speak their language either.

We will not discuss bathroom behaviors except to say you must imagine a two-year-old in the body of an eighty-year-old. We will not describe the stubborn and angry refusal to “freshen up.” We will attempt to forget the humiliation of what is disgusting. They have forgotten soap. Being fastidious. And being clean. But I promised: we will not discuss.

You thought you knew Alzheimer’s disease from the commercials, you who do not suffer. I’m not making fun of you or casting aspersions on your vision or curses on your lives. They are not like those people in the pharmaceutical ads, smiling and agreeable, ready to go for a ride to the park for a picnic or to the doctor’s for a check-up. That’s a ten second view of this disease, and you are forgiven for believing it’s the whole story. How would you know? May you never know otherwise.

When it’s time for me to leave where my mother lives to go to work, to go home, to meet appointments or obligations, I’m overwhelmed with guilt. The guilt weighs me down so I can’t lift my feet without stumbling. The guilt in my gut demands to be fed with sugar and carbs, the garbage that savages my diet and my health. For friends, the guilt in their gut leaves them unable to eat anything at all, and their self imposed fasts savage their diet and their health. We all endure bouts of anxiety, so leaving means we really do not leave – we take our ill loved ones with us. They accompany us throughout our day. They sleep at the assisted care residences but they sleep also in our dreams, our nightmares, and when we cannot sleep for worrying. Hours and hours of sleepless nights, and days of exhaustion to follow.

I do not have Alzheimer’s disease but my mother does. Therefore I also suffer. Now you know why I drive home sobbing.

 

*Painting Sad News, 1856, by Rostislav Felitsin

*The official position taken by the Wikimedia Foundation is that “faithful reproductions of two-dimensional public domain works of art are public domain“.

This work is in the public domain in its country of origin and other countries and areas where the copyright term is the author’s life plus 100 years or less.

This photographic reproduction is therefore also considered to be in the public domain in the United States.

The Blueprint of Story

No matter the genre or time period, all good literature tells something about how to be human. I don’t mean the classic elements for writing like plot, character development, conflict, setting, and resolution to the dilemma. I mean the motives for human interaction: love, honor, quest, change, relationships, violence, fidelity, revenge, sensuality, history, courage, cowardice, defense – these are the scaffolds of writing because they are the markers for living. They are what make people tick, what stimulates their actions. A story should expose the extraordinary range of human behavior, morality, intelligence, corruption, and spirituality.

To me this is key:  how one feels about one’s place in the universe and how one functions in response must be the essential blueprint of the story.

 

Just a Thought 8

 

 

Painting The Storm by Pierre Auguste Cot, 1880, courtesy Wikipedia

 

 

Hey, You Can’t Write That!

 

Over the centuries that books have been published, certain titles have incited self appointed morals committees to assign them a “banned” badge. It only takes a quick jog on the Internet to find lists of books deemed at one time unsuited for public access, for reasons of sexual erotica, salacious language, unpopular political viewpoint, sadistic violence, extreme politics, cultish religious persuasion, heinous crimes, bizarre mores, or other “inappropriate” activities. Sometimes it’s just irreverence for someone else’s venerated principles. This is especially true when outcast pursuits are sympathetically promoted by the author. Salmon Rushdie’s name comes to mind when I think of censorship. His book The Satanic Verses so inflamed some in the Islamic world that religious extremists put a contract on his life, and he was forced to keep his whereabouts secret for years.

Rushdie is in good company with Alice Walker for The Color Purple, Ray Bradbury for Fahrenheit 451, Toni Morrison for The Bluest Eye, F. Scott Fitzgerald for The Great Gatsby, Harper Lee for To Kill a Mockingbird, Robert Cormier for The Chocolate War, Maya Angelou for I Know Why the Caged Bird Sings, Mark Twain for The Adventures of Huckleberry Finn, Boris Pasternak for Dr. Zhivago, John Steinbeck for The Grapes of Wrath, Katherine Paterson for Bridge to Terabithia, John Steinbeck for Of Mice and Men, J.D. Salinger for Catcher in the Rye, Aleksandr Solzhenitsyn for One Day in the Life of Ivan Denisovich, Malcolm X and Alex Haley for The Autobiography of Malcolm X, Vladimir Nabokov for Lolita, Aldous Huxley for Brave New World, Joseph Heller for Catch-22, and Aristophanes for Lysistrata. These share the honors for banned books and are also considered literary classics. The Bible, both Jewish and Christian versions, made it too. If your favorite banned book isn’t on this list, it may be because I have not read your selection, and you’d be reading only the titles until next year’s Banned Books Week.

We sneer now about many of the original judgments, but we are privileged to live in a society that (mostly) accepts all manner of writing. Incendiary or bigoted work raises eyebrows and may draw intense attention, as does outlandish historical distortion and manipulation of documented facts, but it still gets published.  As a free society, we are open to all viewpoints. Despicable work allows us opportunity to present the other side of the coin and argue for consideration.

Still, I suspect that some writers look over their shoulders to be sure “no one” is offended by what they write, “no one” being perhaps an employer or family member or someone with an ax to grind and a wallet thick enough to pursue a lawsuit. With everyone only a key click away from public comments about anything, with misinterpretation and misinformation a frequent flag waver of rash opinions, and the word “viral” familiar even to young children, it doesn’t take much to understand why a writer, especially a new writer, might exercise caution.

Writers should balance how appropriately a controversial topic or unpopular position contributes to our stories more than whether or not to include it. If writing is salacious, provocative, or seductive, does it generate salivating readers or promote thoughts about difficult ideas among thinking people? Words have the power to incite rage. They instigate sympathy, tempt action, or ask insightful questions. To struggle with what challenges us is to confront what holds us back. The danger of shying away from controversy that might be banned is that the result might be a warm mush of boredom.

The primary theme of my own books concerns family relationships. I’ve included aspects of abortion, child abuse, physical abuse, sex, homosexuality, murder, violence, and borderline psychotic behavior. Not just a sentence about a woman who got an abortion, or a comment that someone had sex, or a mention of a character who was gay, but fully descriptive passages as they’ve suited my stories. Am I brave or foolish? Not sure, but my biggest concern involves how well written these passages are, not whether I should have included them at all. If readers are uncomfortably stirred, well then, life is like that. Books, especially fiction, should be a safe place to explore controversial material even if we prickle or blush as we read. I suggest that writers focus on good writing, whatever their topic or genre. We should all be so recognized on the same podium as the authors listed here.

September 24 to September 30 is this year’s Banned Books Week. Libraries and book stores will feature the titles of books that once made the infamous cut. Banned Books Week celebrates not only the freedom to read, but also the freedom to write our concepts of truth, to plumb what is dangerous, and to expose what horrifies us. Censorship stems from fear of the unknown, hatred of other allegiances, marginalization of those who are different, and jealousy of universal vision. A just world will be borne on the flight of daring ideas. It’s the world I strive for.

May you find a way to celebrate Banned Books Week that is true to your spirit, whether reading a book on the list or writing something from the other side of the safety net. Be daring. Read outside your comfort zone. Write well no matter what.

 

 

 Painting Young Girl Reading by Jean Honore Fragonard

 

 

I Am Not Responsible

Writers are not responsible for readers whose knowledge and life experiences are so dwarfed they can’t relate to what is written. Assuming the writer is clear and succinct in their craft, it’s the reader’s responsibility to educate himself sufficiently so he can participate in reading an extensive literature.

Imagine if it were every writer’s task to teach the alphabet before he began to write. A is for abecedarian, B is for bahadur, C is for clupeoid, Z is for zymosis.*

That being said, writers may not write in tongues, arbitrary and fabricated languages having no value other than to caress the writer’s ego. In that case, writers do need to teach the alphabet. (Perhaps as well to see a therapist.) Also the culture, the history, the aspirations, and the APO of the invented country. Maybe that should be the UPO – Universal Post Office.

Invention, however, is the domain of fiction writers. Be creative, fellow writers. Don’t teach the alphabet but do incorporate internal logic and some familiar external landmarks by which your readers can find their way. In other words, leave the light on. And a switch near at hand. At least a glossary.

Writers and readers need have a shared ground and some common sense. We are all responsible for that much.

 

*Glossary

abecedarian: a person who is learning the alphabet

bahadur: a distinguished personage

clupeoid: like the herrings

zymosis: fermentation

Definitions from The World Book Dictionary, 1987, in two-volumes

 

Just a thought 7

 

 

Dictionary page image courtesy: pixabay.com

 

Alzheimer’s Pledge

I got you, Mom. If you fall, I will be there to catch you. You have Alzheimer’s disease, and you need someone on your side all the time. I promise to protect your physical presence in the world, even if you have no idea that’s what I’m doing, even if you get angry with me, even if you’re fed up with the whole damned thing. Which you are much of the time. Which I am much of the time.

I am your durable power of attorney for healthcare, your POA. It’s not a position I asked for but I’m happy to do this because you need someone. Every person who suffers from Alzheimer’s needs a POA because that person’s mental and physical health will never improve. It will decline forever until they die. During this term – long, short, agonizing, foreign – someone with the best interests of the ill person must make decisions about medical care. By this I mean all medical care and overall health care strategies: dental, vision, podiatry, bones, hearing, emergencies, daily pharmaceutical regimen, routine examinations, emotional well being, yearly vaccines, food and liquid needs, haircuts, X-rays when indicated, injuries – every aspect of body function. It’s a titan of a job, because caring for another human being is a titanic responsibility.

There’s no remuneration. It’s a freebie, like you were a freebie mom to me when I was little. Except of course, I got older and learned to do more and more on my own, and as all Alzheimer’s victims, you are less and less capable of doing anything, or learning anything new, or becoming more independent. You and Dad probably chose me because I’m the oldest and the one who lives closest. I’d like to think I also proved other noble and noteworthy qualities for the position, but likely, it was just the first two: oldest and nearest. Of course, you never thought you’d need me. You thought you’d both maintain your mental and physical capacities to care for yourselves without interference from anyone else. Still, thank heaven you chose someone, because who knew, right? Who knew you would one day need an advocate?

And this is where it has brought us. You struggling with the daily failures and disorientation that mark your illness, me wrangling with the daily tasks and quandaries of making your life easier, safer, as healthy as possible.

You don’t know that I’ve written a novel about a family trying to find a safe haven for their mother who has Alzheimer’s disease. It’s being edited while I write this, and I hope to submit to an agent I hope will love it and submit it to an editor. It’s a story that needs to be told because other people need to read about the difficulty of finding just the right place for their loved one to live. I started writing it about three years ago. You were long past the time when I could ask your opinion, consult on the accuracy of the plot, discuss the characters.

And I know the first thing you would have said to me, were you able. “You’re not writing about me, are you? Because my life is private and you have no right to tell anyone else about my troubles. It’s not their damned business.”

So here is my pledge as your oldest daughter and your POA, as the person who advocates in your best interest.

 

Dear Mom,

Nearly everyone already knows you have Alzheimer’s disease. Most people spot it the moment they see you, it’s that visible, like a tree floating rootless above the ground. You couldn’t miss it. And that’s the sum of what everyone knows, because you are right. Your life and health are not their damned business. I promise not to tell anything about your personal life.

Tales about “what my mama told me” are all fabrications, far from the truth and employed only as tropes. They are a way to describe situations that are far from the asymmetric orbit of your life. They are not about you.

The book I’ve written is not about you, our family, or the place where you live.

The articles in this series about Alzheimer’s on my blog, Ink Flare, are not about you, our family, or the place where you live.

You are hanging by the slimmest filament to life here on Earth, but I respect you, and all that you’ve always stood for: a sense of dignity, a right to privacy, a demand to keep your own secrets.

I will not betray you. I will not answer questions. I will not speak in asides. I will not reveal your quirks or problems. Your life still belongs to you, no matter how alien your current experience may feel.

That’s my promise to you, Mom. What I write and what I tell is not about you, and never will be.

Not because I’m your POA.

But because I’m your daughter, and I care, and I got you.

All my love,

Shari

 

 

Photo portrait of woman courtesy Max Pixel

 

 

 

 

Don’t Know Much about Alzheimer’s

I don’t. Despite the fact that someone to whom I’m very close, someone I love, has suffered from Alzheimer’s disease for almost two decades, I don’t know much. If you want the science facts: search the Internet, contact your local Alzheimer’s Association, attend support groups and conferences. They are your best resources. I know the basics, of course, but the full history, science, probable outcome, care giving tips, and research on cures – other places will get you more accurate and current information.

This is what I do know: how it feels to be on the inside. If you are a family member, you are as confused, angry, and miserable as the person you love who suffers from Alzheimer’s. In their situation, they rage, weep, howl, throw things, and demand to go home. When you witness their fury, you demand to go home. If they don’t live in a residential facility designed to care for them, and if they live with you, you demand to get the hell out of there. When you leave the place where they reside, you drive dangerously because you are in tears or you’re fuming or you’re demanding of God and all the gods: Where is the justice or fairness of this horrendous disease? And when the hell will it end?

Not just when the hell are they going to find the right pharmaceuticals to stop it or slow it down, when the hell are they going to develop a vaccine to prevent it, when the hell are they going to have the medical protocol to reverse it. But when the hell is the hell you and your loved live every day of your life going to end? And the self-recrimination that erodes your soul because you are more aware than anyone on earth that it will end, at least for your particular loved one who suffers, and for you who also suffer, when they die. And that’s hard to face – your own admission that they’ve had enough of this frightening illness that keeps them from knowing where they are, who they are, and when they can get back to something pleasantly familiar. Your own admission that you feel exactly the same – when can you get back to something pleasantly familiar?

You must begin with language, an odd requirement as the loss of appropriate language is one of the identifying marks of the disease. For us, language is not elusive – it’s inadequate. All the superlative words you may summon are nothing compared to how you feel. Try “angry” – you are way beyond angry, you are enraged, you are furious, you are near homicidal, but who would you kill? How about “despair” – you’ve fallen into the depths of anguish so deep that you’re certain you no longer reside on Earth, yet there’s nowhere for you to go. Or think of “regret” – is there some way to explain how sorry you are for everything you may have done to have caused or exacerbated this illness, so you may return to the way things were?

At least I have the answer to that last one – nothing. You did nothing. Likely your loved one did nothing either. Because despite all the warnings about avoiding inflammation and good diets and lots of healthy activities, the evidence that none of that is any protection lives in the same facility where your loved one lives. Doctors, astronauts, engineers, inventors, teachers, entrepreneurs, nurses, physicists, artists, clergy – they are not just the visitors: they are the afflicted. They are the ones who have forgotten they once headed the pediatric ward at a hospital, or worked on the security team for NASA, or started a well known business still serving the needs of millions of people across the country, or spoke words of faith to the congregation. Because they have forgotten everything — what they ate for breakfast, your name, perhaps their own name, and eventually the ability to speak at all.

Superlative language is a pile of gunk. It doesn’t fit the situation. Make a list of words for yourself – best, first, most, last, worst, hardest – and eliminate everything not strong enough, or descriptive enough, or just plain not expressive enough. You’ll be left with what your loved one is left with: nothing. Zilch. Nada. Bupkes. A big freaking blank. Language as we know it doesn’t touch our desolation. Or theirs.

And how, you wonder, do I, a getting-older woman who’s written six books and one more in production stage, none of which have been published, who was an art teacher and a religious school teacher of decent but really ordinary rank, have the nerve to write about Alzheimer’s in the first place? What gives me the inside edge to write with authority, to point the way for others lost in the fog, and to offer, God forbid, advice? Following is the answer.

My mother has Alzheimer’s. Your husband or wife, your mother or father, your sister or brother, your best friend or closest advisor, your neighbor or colleague has it. Someone you know suffers. I’m going to help you here, you who stand by the side of the person you love. My credentials are not based on science. They are based on proximity and endurance, neither of which I asked for, neither of which my mother asked for.

As an artist, I’ve been trained to see the details, the outlines, the comprehensive whole by which I’m able to project a visual image others can recognize. As a teacher, I’ve been trained to pay close attention to the total affect of my students and to the way they internalize information so they can actually learn something. I know how to describe what’s going on.

And that’s what I’m going to do. I’m going to describe what’s going on with those who suffer from Alzheimer’s, though not the scientific or medical portion of this illness. I know what happens to  the others who suffer – the family loyally by the side of the afflicted. I’m a warrior here. I’m going to report on the front line battles and back end skirmishes from the point of view of a dedicated observer.

Come back. Future posts will address the issues for which the medical community has no answers. I may not have the answers either, but I know the paths on which you will journey and I will help illuminate them. And why, you ask, why her, the writer, the teacher, the artist? What are her credentials?

I care.

And in case you’re wondering: no one knows enough about Alzheimer’s disease.

 

 

Photo of woman crying courtesy: maxipixel.freegreatpicture.com  – Creative Commons Zero – CCO