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.