Sparked by Words

I don’t. Despite the fact that someone to whom I’m very close, someone I love, has suffered from Alzheimer’s disease for almost two decades, I don’t know much. If you want the science facts: search the Internet, contact your local Alzheimer’s Association, attend support groups and conferences. They are your best resources. I know the basics, of course, but the full history, science, probable outcome, care giving tips, and research on cures – other places will get you more accurate and current information.

This is what I do know: how it feels to be on the inside. If you are a family member, you are as confused, angry, and miserable as the person you love who suffers from Alzheimer’s. In their situation, they rage, weep, howl, throw things, and demand to go home. When you witness their fury, you demand to go home. If they don’t live in a residential facility designed to care for them, and if they live with you, you demand to get the hell out of there. When you leave the place where they reside, you drive dangerously because you are in tears or you’re fuming or you’re demanding of God and all the gods: Where is the justice or fairness of this horrendous disease? And when the hell will it end?

Not just when the hell are they going to find the right pharmaceuticals to stop it or slow it down, when the hell are they going to develop a vaccine to prevent it, when the hell are they going to have the medical protocol to reverse it. But when the hell is the hell you and your loved live every day of your life going to end? And the self-recrimination that erodes your soul because you are more aware than anyone on earth that it will end, at least for your particular loved one who suffers, and for you who also suffer, when they die. And that’s hard to face – your own admission that they’ve had enough of this frightening illness that keeps them from knowing where they are, who they are, and when they can get back to something pleasantly familiar. Your own admission that you feel exactly the same – when can you get back to something pleasantly familiar?

You must begin with language, an odd requirement as the loss of appropriate language is one of the identifying marks of the disease. For us, language is not elusive – it’s inadequate. All the superlative words you may summon are nothing compared to how you feel. Try “angry” – you are way beyond angry, you are enraged, you are furious, you are near homicidal, but who would you kill? How about “despair” – you’ve fallen into the depths of anguish so deep that you’re certain you no longer reside on Earth, yet there’s nowhere for you to go. Or think of “regret” – is there some way to explain how sorry you are for everything you may have done to have caused or exacerbated this illness, so you may return to the way things were?

At least I have the answer to that last one – nothing. You did nothing. Likely your loved one did nothing either. Because despite all the warnings about avoiding inflammation and good diets and lots of healthy activities, the evidence that none of that is any protection lives in the same facility where your loved one lives. Doctors, astronauts, engineers, inventors, teachers, entrepreneurs, nurses, physicists, artists, clergy – they are not just the visitors: they are the afflicted. They are the ones who have forgotten they once headed the pediatric ward at a hospital, or worked on the security team for NASA, or started a well known business still serving the needs of millions of people across the country, or spoke words of faith to the congregation. Because they have forgotten everything — what they ate for breakfast, your name, perhaps their own name, and eventually the ability to speak at all.

Superlative language is a pile of gunk. It doesn’t fit the situation. Make a list of words for yourself – best, first, most, last, worst, hardest – and eliminate everything not strong enough, or descriptive enough, or just plain not expressive enough. You’ll be left with what your loved one is left with: nothing. Zilch. Nada. Bupkes. A big freaking blank. Language as we know it doesn’t touch our desolation. Or theirs.

And how, you wonder, do I, a getting-older woman who’s written six books and one more in production stage, none of which have been published, who was an art teacher and a religious school teacher of decent but really ordinary rank, have the nerve to write about Alzheimer’s in the first place? What gives me the inside edge to write with authority, to point the way for others lost in the fog, and to offer, God forbid, advice? Following is the answer.

My mother has Alzheimer’s. Your husband or wife, your mother or father, your sister or brother, your best friend or closest advisor, your neighbor or colleague has it. Someone you know suffers. I’m going to help you here, you who stand by the side of the person you love. My credentials are not based on science. They are based on proximity and endurance, neither of which I asked for, neither of which my mother asked for.

As an artist, I’ve been trained to see the details, the outlines, the comprehensive whole by which I’m able to project a visual image others can recognize. As a teacher, I’ve been trained to pay close attention to the total affect of my students and to the way they internalize information so they can actually learn something. I know how to describe what’s going on.

And that’s what I’m going to do. I’m going to describe what’s going on with those who suffer from Alzheimer’s, though not the scientific or medical portion of this illness. I know what happens to  the others who suffer – the family loyally by the side of the afflicted. I’m a warrior here. I’m going to report on the front line battles and back end skirmishes from the point of view of a dedicated observer.

Come back. Future posts will address the issues for which the medical community has no answers. I may not have the answers either, but I know the paths on which you will journey and I will help illuminate them. And why, you ask, why her, the writer, the teacher, the artist? What are her credentials?

I care.

And in case you’re wondering: no one knows enough about Alzheimer’s disease.

 

 

Photo of woman crying courtesy: maxipixel.freegreatpicture.com  – Creative Commons Zero – CCO

 

 

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Comments on: "Don’t Know Much about Alzheimer’s" (28)

  1. I look forward to future posts. We went through this with Poor John’s Aunt Esther who lived with us for eight years before going into demented aged care at age 97. What a roller coaster.

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    • Your ill aunt lived with you until she was 97 – that show remarkable fortitude and compassion. I’m humbled by your nature, though I can tell by your travel posts how much you care about people.

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  2. I never would have understood your pain until these past two years living with a brain-damaged person–one with rage and confusion. I know it’s not the same but that feeling of being ripped and torn between your own healthy desires and the care you are compelled to give others is tormenting at times.

    Despite feeling you don’t know enough I think you know more than enough to help others in the same boat who may not be as eloquent as you are but need to hear what you have to say. This was a very moving post. I’m glad you shared it.

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    • I don’t want folks who need to understand the medical facts behind Alzheimer’s first (and people should learn this first when dealing with someone who has the disease) to look to this blog for that information. And I thank you for recognizing that my strengths in coping with my mom’s illness are in other spheres.

      Liked by 1 person

  3. You seem to know everything important, Shari. And what you have done is write a story, to communicate what Alzheimer’s is with a passion and emotion few can escape.

    Liked by 2 people

  4. You bring up important points, Sharon, and for those who are on the “inside” they are not in the position to really articulate what they feel. You seem to be the logical choice to share this information–it’s all anecdotal anyway. I worked in a nursing home for a year and saw the effects of Alzheimers on so many patients. I always imagined it would be like waking up from a vivid dream, you know the kind where it seems real and you almost wake yourself up talking? Then suddenly you are awake, and you’ve all but forgotten it, or realize that some of the talk once you comprehend it was gibberish, or disconnected.

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  5. Shari,
    Your voice, your words about your journey will, undoubtedly, touch people in ways you will not know. Loss is often thought of as indescribable but I have found your words describe the indescribable. Bravo.

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  6. Yes, you do know, and I am grateful.

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  7. Thank you for writing this. Went through it with my mom who had it for 14 years before she died of its complications. (Not remembering how to swallow…not even water.) You’ve described it all so well…. it’s a nightmare disease, the cruelest of them all.

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    • Betty, I’m so sorry for everything your mom suffered and for all you and the rest of the family went through as well. It’s a heartless disease.

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      • It is heartless indeed, Sharon, and I’m sorry that you’re going through it with your own mom. If it’s any comfort, you might still see a glimmer of lucidity in her now and then. My mom no longer knew me, but a couple of days before she passed her eyes focused on mine and seemed to clear and I could swear she recognized me. It was a meaningful moment that I still hang on to – that her real self was still “in there” somewhere at the end, however brief.
        Warm regards to you – your blog is a service to many who have loved ones with the disease. And it helps talking about it even now, after they are gone. Thank you for your compassion. ❣️

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      • It must be a small but genuine comfort that your mom recognized you. It’s hard to do so much for the people we love when they appear not to know who we are, but I’m certain they are comforted by our presence.

        I’ve heard similar stories from other people, that there is often a spurt of energy, health, and rational cognizance just before an Alzheimer’s patient dies. I have no doubt that they are still in their bodies, but the disease prevents then from accessing their memories and functionality.

        Liked by 1 person

      • It has been the one little glimmer of comfort I’ve felt since she passed on. The eyes can speak volumes. I hope you too will see such lucid moments in your mom’s eyes. My heart goes out to you in empathy, Sharon. 💕

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  8. Shari, all the medical articles in the world cannot help with the day to day of living with someone with Alzheimer’s – your stark words here describe a horrendous nothing, when language fails. But obviously you find a way of living, of helping, caring, coping. Your posts will be a source of solace and aid to others, of great interest to us all and hopefully a little to you too. Hugs to you & your mother, living with the unimaginable. Xx

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    • Thank you, Annika. This is exactly what I hope to achieve, that people will find ways of coping. The book has quite a bit of humor, as that’s one of the ways of keeping one’s sanity while getting through everything.

      Liked by 1 person

  9. You talk from experience and that is talking with authority and authenticity. Your posts and your book will help a great many people who are starting out on this incredibly sad long journey of lost identity.

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  10. My mother in law was in the early stages when she passed away. I cannot image how difficult this disease is long term. My heart goes out to you, Shari. xo

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    • Audrey, I’m so sorry about your mother-in-law, may she rest in peace. It is very taxing because as the disease progresses, so does the decline of the ill person in every way, and the responsibilities of the family members increase exponentially. I can feel your heart, thank you.

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      • She never particularly approved of me, but she loved her sons. And they her, and I watched them worry. I think in the end it was best she left them another way, as neither would have been able to handle the tragedy of dementia. My heart goes out to you, Shari. ♡

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      • Audrey, I’m sorry your mother-in-law suffered and that her sons worried so much. Relationship problems are multi-dimensional and it’s likely that her disapproval had nothing to with you but with things outside your control.

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