Sparked by Words

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.

 

 

 

 

 

 

Comments on: "Alzheimer’s DMZ" (29)

  1. Shari, This is an eloquent post describing the heartbreaking situation of being a DPOA. My heart goes out to you and your ten years of making those all important decisions on behalf of your mother. Not only is there the numbing ache of illness but the responsibility must be overwhelming. As you write so profoundly : ‘It is something close to a sacred task to accept being a DPOA for another person.’ I hope the medical professionals were there to help you and loved ones by your side as you were at your mother’s aid. My heart goes out to you, Shari! ❤️

    Unfortunately Alzheimer’s and diseases that require loved ones to make decisions on behalf of relatives seems to be increasing and we will need advice and help more than ever. Your movingly titled book ‘Where Did Mama Go?’ Will be there to help them, giving guidance at a most difficult time, as well as being a memoir of the time in its own right. I wish you the best of luck with finding agents/ publishers.

    Hugs xx

    Liked by 1 person

    • I really appreciate your thoughtful comments, Annika. You’re right about the quagmire of being a DPOA. The more progress made in the medical/healthcare fields, the more convoluted the options become. My father was a physician and he used to say, back in the 1950’s, that pneumonia was the friend of the very aged. Now we have many ways of curing pneumonia but aging remains a difficult process for many. For those with diseases like Alzheimer’s that destroy memory and communication, the situation is even more clouded. My mom and I were indeed surrounded by many professionals and our family, and I’m so grateful for every contribution.

      Actually, the title of my book, Where Did Mama Go? , is a bit more obscure than it appears. I hope you’ll get to discover it for yourself one day.

      Liked by 2 people

  2. Sharon, I have been reading your deeply heartfelt and intelligent account of being
    the person in charge of the life of a loved one. A DPOA. It must be a heart wrenching
    task as there is too little factual proof of what will feel best for each individual.

    I have never been in your position but know enough people to see how different
    each sufferer react. One big criteria when choosing would for me be that the
    staff working at the caring place do have their hearts engaged. Tablets and
    meal times are not enough for any of us.

    I ramble, your book will be enlightening and one I will get.

    Bless

    miriam

    Liked by 1 person

    • I wasn’t at all prepared as I didn’t even know I’d been assigned as my mom’s DPOA until my dad passed and the position was deposited my way by an attorney. Sadly, this is often the case. It was on the job training from the get go and terrifying every step of the way. I still have regrets about some decisions but you’re right – there’s just about no proof about what will be best. Thank you for such an enlightened comment, Miriam.

      Like

  3. You have lived through my nightmare, Shari. I don’t know how, though. I’m thankful that for these sorts of diseases we now have a law–The Right to Try–that allows people who have no hope to seek a miracle. I’ve said this before but I’ll do so again–your mother was lucky to have you.

    Liked by 2 people

    • You make me feel like I did something right, Jacqui, and I really appreciate it. I’m still kept awake at night wondering what else I might have done to help her, but I did try. Thank you so much for your thoughts. I hope you never face this one.

      Like

  4. so painful – as a writer, as actors do, I wonder if we’re crazy to feel compelled to go through trauma over & over again…

    Like

  5. Shari, so many are going through this dead-end journey and all we can do is hang on for dear life. With mom and MIL in care homes, and their memories are fading coupled with the physical ailments, and my 82-yr old dad living in the Sierra Foothills who is starting to forget (being treated for mild COPD)…this all hits us close to home. Currently we have siblings taking on these legal tasks with our moms, but my dad is another story. His wife is 15 years younger and still has to work, but they seem to do all right. The day will arrive soon that my dad needs more care and I have this feeling I will be the one to assist my step-mom since I am geographically closest. It makes sense, but your words of wisdom do prepare me for the inevitable.

    Like

    • Over nearly two decades of assisting my mom, I accrued much experience and found I could help folks newer to the table. Many times I encountered family members leaving the residence where my mom and their loved one lived, the other person in despair or enraged or floundering for a clear path. I helped them see a way forward, and realized that my long term status with my mom afforded me skills I could share. It’s why I decided to write the book as I realized I could see the demarcation between insanity and reasonable. I hope I offer sensible possibilities to those coming to terms with this situation in their own family.

      Terri, if you feel overwhelmed or aren’t sure what course to take, please drop me a private email. I’m not an expert or a professional in the field, but I do have insight into certain situations. At least I have a soft shoulder to lean on.

      Liked by 1 person

  6. Shari, so hard to read about such heartbreaking circumstances which sadly are increasingly prevalent in our society. You have written about it so eloquently and obviously have crossed the DMZ multiple times so I hesitate to bring this up… But it might be interesting to you to read an interview with a friend of mine. Her father has alzheimers and long story short, she decided a few years ago to take him out of his nursing home in Toronto to her retreat center in Nicaragua to live with her. He had been in a wheel chair and was spiraling downwards. After months at her place and a diet of completely plant based foods, sunshine and fresh air, and the love of his daughter, he is a different person. He has made significant progress and is now walking again. The interview is on her facebook page, I can try to find it for you and send it via email. Her name is GRACE VAN BERKUM .

    I am sure that your book will help many with your insights into this devastating disease and the challenges associated with it for family members.

    Peta

    Like

  7. Sharon, I hope you’ll have your book published soon. Your experience will be invaluable to those going through what you went through (and what I went through). Wish I had known you then. As an only child with no siblings to share the responsibilities it was especially hard. (Thankfully my husband was an enormous help – but I was still left with all those decisions.)
    Anyway, your writing on this subject (and all other subjects, actually) is masterful. Thank you for sharing your experiences with us.

    Like

    • Betty, you nailed it with your observation about how lonely a job this is – and having siblings doesn’t necessarily make it easier. I’ve been very fortunate to have a husband and adult sons and their families to give me and my mom love and support. You and I are in that special, awful club of folks who know what it’s like. Hopefully one day, they’ll have to disband our club for lack of participants.

      Thank you also for the wonderful comment about my writing. About every second day I wonder if I can do more than write the alphabet in correct order.

      Liked by 1 person

      • Sharon, I too hope that someday they’ll be able to disband this “club”. Seems like a vaccine or a cure are long overdue. My biggest fear is becoming a burden to my family someday. Not that I like that word “burden”…. it’s offensive to some in this context. Being a caregiver is a labor of love. But Alzheimer’s is a nightmarish disease for all concerned – victim and family members.

        As for your writing, I do think you’re one of the most eloquent writers I know here on WP!

        Like

      • I also worry about becoming a burden to my sons. It’s unremitting, and though there might be love in there somewhere, the responsibilities take an awful toll on the health and mental well being of family. Cure, vaccine – the brain resists dependable treatment.

        Thank you for your praise, Betty. I’m humbled.

        Like

  8. My father-in-law went through all of the stages at home with my mother-in-law taking care of him with the help of Hospice coming in every day for a couple of hours. Was that the right decision? I really don’t know. My husband and I were also here to help. I saw how tired my MiL got during that last year. I also saw how calm my FiL was during that time. I saw the accepting of my FiL passing in my MiL. I would like to think the decision to keep my FiL at home was a good one but I really can’t say I know if it was or wasn’t.

    Like

    • Glynis, given what you’ve written here, I think your family made the best possible choices for your FiL and that he was as comfortable as possible. I second guess my decisions about my mom all the time but none of us know how other options may have affected our loved ones. I think you should allow yourself to feel at peace. My daughter-in-law said something wise and loving to me that I think about every day. I say the same now to you: Be gentle with yourself.

      Like

  9. ‘When it comes to dealing with the brain – who knows what’s right or wrong.’ This couldn’t be more true. It’s frightening how little we still know about it and yet we try and poke and do all we can without knowing what effects it will have in the end because we simply can’t help it – we want to help. But at what price?
    One of my aunts is now DPOA for her elderly friend who after her husband died is left alone in this world and also has a lot of health issues. It’s such a very tough job and I don’t know how she does it but she does.

    Like

  10. Thank you for sharing this and I’m sorry to hear you went through it. My mum was power of attorney for my grandpa (who had dementia) and I know the stress she went through. I don’t know that there are any right or wrong decisions here- it’s just doing the best we can in the circumstances- and it sounds like you did that ❤

    Like

    • I know many people doing what I did, most of us thrown the job without benefit of an interview. We’ve all done our best but the road maps are Medieval and the complaints from the peanut gallery look like Twitter trash.
      I hope your mum has recovered – it takes a while.

      Like

  11. Again pardon my tardiness. I save your notification so I don’t miss a post.
    Seriously, this was difficult for me to read. I hope it helps others going through
    this heartbreaking experience.

    Like

    • Andrew, please don’t apologize for reading my posts a bit late. At least you not only read them, you comment such that I know you’ve read the entire post, and I’m deeply appreciative.

      I’ve completed four novels but it’s the third I’m trying to get published first, as it deals with Alzheimer’s. My purpose was exactly what you gleaned from this post – to help other families going through this heartbreak with someone they love. I’m sincerely sorry if you’ve also had to watch someone suffer with this disease. If the Alz posts I write give readers a marked path or a bit of respite, I’m pleased with that.

      Always so sweet to hear from you. Sometimes the things you write really make my day easier – or funnier.

      Liked by 1 person

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