Sparked by Words

Posts tagged ‘Alzheimer’s disease’

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

 

 

 

 

Advertisements

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

 

 

Inspiration for My WIP

images

As promised in my June 9 post, I’m presenting a nip of The Milkman’s Horse, my newest WIP. It’s an exciting undertaking for me, and the provocation for the book is the stories my parents told.

Most of us hear stories from our parents about who they were before we were part of their lives. My parents told me the first story – about where I came from – before I turned three. I believed them at the time but that was before I learned enough about human biology to realize they were fibbing, just a bit. They told me they’d found me in a cabbage patch. They didn’t of course. They’d actually found me at Thomas Jefferson University where my dad was studying to become a physician – in the lunch room where he picked up the wrong brown bag and found me instead of the sandwich he expected. At least that was a story I could swallow.

The next story also concerned human biology. We lived in Hawaii then as dad interned at Tripler Army Hospital. Mom was pregnant with their second child. I was a very curious four-year-old and I wasn’t going to buy that cabbage patch story a second time. So for her next performance, she told me about a little door in her tummy where the baby would come out. A mysterious opening, sorta like the tiny caves carved into every mountainside that we saw when driving around Oahu. My parents said they were inhabited by Menehune, the mythical island pixies who hide from everyday folks. I stretched my neck outside the car window each time we spotted a cave, hoping to see a Menehune. The fact that I never saw one was proof enough for me of their existence. I wanted to see the door in my mom’s tummy immediately. She denied me but later went to the hospital in the middle of the night and came home with a tiny red squalling baby brother. I didn’t trust either of my parents after that. Door in her tummy – give me a break. He’d been left by the Menehune.

Maybe my distrust of their inception stories is why I didn’t listen very well to the rest of their stories. I was already jaded by the unreliability of their narration. Over the next eleven years they shared a few more stories, each of them choosing moments to tell me something about their parents and grandparents and themselves. After wondering where we come from, probably the next most important story is the one about how our parents met each other – so they could then go off exploring to find us kids.

As teenagers my parents lived in Trenton, New Jersey. My mom, “Naomi,” was the youngest daughter in a family of seven kids. She was best friends with “Evelyn” who came from a family of five kids. Naomi and Evelyn belonged to the same temple youth group. The girls arranged a double date. Naomi would go out with “Alexander,” Evelyn’s oldest brother. Naomi’s big brother, “Sammy,” would date Evelyn. That’s where the story ended. I asked many times where they went, what they did, when did my parents realize they were in love, and I was always met with the same foggy answer. Mom couldn’t remember the details. All she knew was that Evelyn and Sammy never hit it off, but my mom and dad had found their life’s mate in each other. They were married 63 years until my dad passed away six years ago.

Last week I spoke on the phone with my Aunt Evelyn – who told me that the double date never happened at all. She’d never dated any of my mom’s four brothers. How could this be true, I wondered? How had my mom told me so often the story about how she and my dad met on a double date with siblings, yet it had never been true? Thing was, she had not been trying to pull a cabbage leaf over me. She absolutely, 100% believed that she and my dad double dated with his sister and her brother. I’m disappointed to know that the double date story was a fabrication. I’ll never know the true story. Evelyn doesn’t know how my parents met or where they went on their first date. My mom now has Alzheimer’s disease.

The most horrible thing about Alzheimer’s is everything. It’s a disease whose victims die twice, once from their life when well, another from the life after the onset of the illness. The loss of dependable communication assures that my mom is an unreliable narrator. However questionable her recall ability decades ago, she now has no memory left at all. I may as well start searching through old lunch bags for the truth of my parents’ story.

I lived in New Jersey through my elementary school years, and all my family was born there or just across the Delaware River in Pennsylvania. Nearly all of my generation still live along the East Coast. Other than my parents who wandered with us kids about as far as we could, from Hawaii to Alabama and back to New Jersey, again to Hawaii, eventually to end up in California, only a few members of our sons’ generation also now live on the West Coast.

Aunt Evelyn disclosed that my dad’s family, who lived for a time in Lambertville, New Jersey, worked at the same period in New Hope, Pennsylvania. My dad delivered groceries on his bike for his dad’s mom and pop market. I always knew about the grocery delivery service but not that the store was in New Hope, which was my most favorite place to visit when I was a kid. I loved the town’s art vibe even at a very young age. There I was in New Hope, seven, eight, ten years old, eating handmade stuffed knishes*, thinking I was in Lambertville. They’re both charming artist colonies spread along the Delaware River across from each other, the river that separates NJ from PA.  My dad’s family traveled between them every morning, driving across the bridge to Bonin’s Market and then driving home each evening. My dad delivered groceries to a famous artist; now I have a better chance of figuring out who the man was since he lived in New Hope, not Lambertville. Cool, yes? A photo on Wikipedia shows the green steel bridge built in 1904. How did I not see the bridge we crossed when I visited? A child’s limited view from the back seat of a car, I guess.

I went searching for confirmation of the few stories my parents had told me and discovered most weren’t true. But I found the famous bridge over the Delaware and rebuilt a relationship with an elderly aunt whom I’d loved when I was a kid. I may never know the truth of those early stories but I learned that families survive all kinds of experiences. As for The Milkman’s Horse – I’d always intended it to be a series of loosely connected stories based on a few true snippets I’d heard in childhood. Thing is, truth depends on one’s state of mind. Now I know where I get my storytelling instincts. Sadly, I can never tell my mom how alike we are – she can’t understand such complex thought. Stories communicate ideas between people, bridging unknown worlds. Alzheimer’s has made communication a strange vacancy for my mom, a gap she can no longer bridge.

Still, I thank you, Dad of blessed memory, and Mom. to

 

*My grandpop’s knishes were baked dough balls filled with savory concoctions of potatoes and onions or onions and ground meat. Best thing in the world to satisfy a hungry kid.

 Bridge image courtesy: public-domain-image.com