Alzheimer’s DMZ

A DMZ, demilitarized zone, is intended to provide safe haven between conflicting powers where opposing parties can discuss possibilities for peace. Or not.

For someone entering the terminal stages of Alzheimer’s disease, a DMZ is an uncharted territory of one or more ill defined or utterly wretched options.

The border between doing all we can to save a life and following a POLST (Physician Orders for Life-Sustaining Treatment) that may reduce medical care for the terminally ill to providing only palliative needs is not a sharp edge. You don’t step from one sovereign nation loaded with physicians, nurses, pharmaceuticals, clinicians, therapists, and social workers into another sovereign nation occupied only by aspirin. Or worse, juju advice from Aunt Henny Penny’s Home Health Remedies for Everything from Alzheimer’s to Zits.

You, the advocate for the one you love who is a victim of Alzheimer’s, the one who is so ill they are suffering painfully with every breath, you walk into a demilitarized zone defined by hidden landmines. Will this treatment end their suffering or end their life? Will that one offer six more months of comfort and communication? Will doing nothing result in the miracle cure you’ve been seeking in tea leaf patterns and fervently uttered mantras? You don’t know where to turn, what to do, who to ask. Because no one really knows.

And that’s why being the Durable Power of Attorney is so damned difficult. You, the advocate, are making legal decisions about the life of another person. And they probably don’t know what you’re doing. And you’re both scared, and neither of you sleeps well.

Before the complicated, multi-optioned POLST, there was a DNR – Do Not Resuscitate. Don’t be a hero. Turn off the machine, lower the lights, let God do what’s natural.

Thing is, we don’t know what’s natural. We don’t know where God is in all this. If you think God is on your side, all I can say is, “Why this? Why let someone dog paddle desparately for years in the swamp of Alzheimer’s disease?”

I believe in God. You may put in your religion of choice here, it makes no difference to me. Even if you guess what religion I follow, you know nothing of how I worship or what I suspect about the Divine. I just don’t think God chooses to take sides, other than the original one of creating this world. Now it’s up to us.

So here we stand, lost in the quandary, trudging through a maze of options but unable to intuit for certain what happens next.  Choose your own adventure, but unlike reading a kid’s book, you get no do-overs. Worse, the choices you make may have a catastrophic outcome for the person you love – your spouse, your parent, your sibling – who suffers from a disease that prevents them from making an informed decision. You’d be asking a toddler in gray hair and aged body to choose between unhealthy and more unhealthy. One choice might hurt less, another might extend their life, another could plummet them into a no-man’s land of parboiled limbo. Not a choice you meant to make, but when dealing with the brain – who knows what’s right or wrong.

The moral and ethical dilemmas are even more volcanic territory to explore. You walk on lava. It follows its own underground river and explodes in fissures you thought were gardens. You may think God expects you to impose a particular medical protocol for the person you love. I bet it’s just the roar of the crowd you hear and the loudest voices are not holy but human. And they don’t know either.

It is something close to a sacred task to accept being a DPOA for another person. I kneel before you as you make choices. Because I was that person for almost ten years, and I know how lonely you are. I know you look at the face of the one you love and hope you chose correctly. It’s the best you can do, and I trust that you made the best choice under the circumstances.

The POLST is a piece of paper of legal statements meant to protect you as you decide what to do next that will best protect the life of the one you love. Now hold their hand, tell them how much they mean to you, how well they guided your life, and try to sleep at night. I wish you well on this journey.

 

Note: I’ve written a novel, Where Did Mama Go? about the devastation Alzheimer’s disease inflicts on families. It’s in the process of being edited, and then I’ll start querying for an agent to represent my work. My credentials for writing this story are eighteen years of assisting my mom through the labyrinth of this illness.

 

Hope painting, 1886, by George Frederic Watts, courtesy of Wikipedia.

 

 

 

 

 

 

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