Sparked by Words

Posts tagged ‘maintaining privacy’

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

 

 

 

 

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