Sparked by Words

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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Comments on: "Alzheimer’s Pledge" (24)

  1. Sorry to hear your family is going through this. Alzheimer’s is cruel. It affects not just the individual, but all his or her loved ones as well. I suspect it’s a full-time job for you to care for her. I can imagine writing about your experience is both cathartic and painful. Best of luck with the book.

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    • You’re right, Carrie, but the emotional toll is the most taxing for everyone. My mom lives in a wonderful residence that focuses on the needs of folks with memory impairment and all the attendant problems, so her daily needs are not something I have to worry about. That still leaves a lot for me to do. Thank you for understanding and for the support for the book.

      Liked by 1 person

  2. You’re making me cry, Shari. If I end up in that old-age lottery, I hope my kids are as caring as you are.

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  3. Sharon, this touched me so much. I’ve been where you are, the POA, the advocate, the one with the sleepless nights worrying about finding a loving care facility (an adult family home was ideal in my mom’s case though they must be carefully vetted out) and on and on. I was an only child so no siblings. Thankfully my husband did a lot to help.
    Be sure to take time for yourself and get as much rest as possible. My heart goes out to you, knowing all you’re going through.

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  4. Touched to tears by your words, Shari.You’ve got your Mom and she’d know it – you’ve written the book with the best intentions and it is one that needs to be widely known and shared…I can’t imagine what it is like having POA, of caring for someone lost within themselves…through your posts and book I will finally get an inkling. Best of luck with your edits and warmest wishes. ❤️ Xx

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  5. This shows how hard this journey has been on you. I wish it was not that way. I “saw” my brother go through it with my father. At times, he had to be more of a robot, going through all that needed to be done sometimes. I hope you are taking some time from yourself during this struggle to refuel your soul.

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    • Glynis, I’m so very sorry to know your father suffered from Alzheimer’s. You know how tough it can be. I do make sure to have other things going on in my life and I encourage others to do the same. One of those is attending my temple, which I’ll be going to tonight. Always a spiritual lift.

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  6. This is such a powerful post, Shari and my heart goes out to you and your mother. 💕 Any mother would be lucky to have such a daughter. And it’s such an amazing tribute with words that can help many, when words often don’t seem possible to express at all.

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  7. Your letter is beautiful Sharon and your Mum is lucky to have such a caring well-intentioned daughter looking out for her. The government here has set up an agency to monitor and prevent elder abuse. I think it is such a sad state we have got to when we have to have outside sources monitoring what the family might be doing. If only every one was like you. My Mum doesn’t have Alzheimers but she is now losing bits of her memory and I can imagine how hard it is for you. Hope you find the strength you need over the next days, weeks, years.

    Congratulations on getting your book to this point. Looking forward to reading it when it is published.

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  8. I read this a few days ago, Shari. After reading your letter to your mom again, I’m just as deeply touched by your love for her. You’re a great daughter, Shari. Praying for your book to hit the shelves…your mother would beam with pride.

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  9. Simply beautiful. I can’t say anything else.

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