Sparked by Words

It’s been five months since my mom died, nearly ten years since my dad passed. I’ve only started to grieve both of them, appropriate since once they decided to truly stick together (thank God for Marriage Encounter) they were rarely apart. That was well into their marriage, the first twenty-five years packed like a Molotov cocktail with vitriol and blame, the last thirty-six jammed with hand holding and secrets. Also affection, maybe love, and a charmed social appearance that fooled the world. Which meant there was no place for me until I was needed by my mother’s side after my dad died.

My mom suffered from Alzheimer’s disease, the condition from which there’s no respite and only one ultimate outcome. Long before we identified the alien craters of her brain as the vestiges of a decimating disease, I knew she also bore the scars of full throttle psychosis from childhood, a mental health condition that colored her with crazy glue and nearly destroyed me. It took years and years for me, first of hiding, then of admitting, then of sharing (too much, way too much,) to finally begin to heal. I will be seventy-years-old on Labor Day – I have only begun to understand, only begun to heal, but at least I have that.

In the 117 years since Alois Alzheimer identified the disease, they (the scientists, doctors, clinicians) have made virtually no progress in finding a cure, a prevention, or even an effective interruption in the progress of the disease. The study of why the brain constructs this weird labyrinth of reduced communicative skills and thunderous retreat to childhood has flat lined.

The newest research shows that they know next to nothing after all, and the promised cure around the bend is a long way from a pill or a plan. So much for prophecy. Instead it’s a long flat road, getting flatter as they travel, sticking needles into volunteers, taking MRI’s, prescribing pills, diets, and regimens. It’s the brain after all, the most mysterious and complex of human organs. Let us in, the scientists beg, but the brain smiles its twisted spheres and holds tight its secrets, a snarky Cheshire Cat. Drink me, it answers and grins, the key too hard to reach. It’s a long way down the rabbit hole and no easy climb back up. It hardly matters to my parents. They are both gone.

Elisabeth Kubler Ross identified five stages of grief at the loss of a loved one. They have nothing to do with me. I’m not following her order. I’m wallowing in all of them at once and more that she never mentioned. Because part of the process of grief is coming to terms with the history of yourself and the person who died.

When my father died, I had no opportunity to grieve. True grieving is, after all, a luxury. There must be time to sit on the sofa and cry all night long, to wander the back alleys looking for something more dangerous than what you’re already enduring, to drink yourself into a stupor and fall naked into someone’s bed, to kneel at a grave and keen the loss. I didn’t have that time. I had a mother whose plunge into Alzheimer’s made rubble of my time. Of me. She needed me as her legal advocate, her appointment transportation, her entertainment committee, her financial warrior, and sometimes her confidante. For while I had no time, she had all the time.

Nothing pressed on mom to get things done. Paying rent, shopping for toothpaste, washing blouses, making dinner, even bathroom assistance – it was all provided. Since the progress of her illness had been identified by her physician as much more severe than I’d realized, (remember, I said my parents had crafted a social appearance to fool the world) I’d been forced to place her in a memory care residence. Not now will I discuss the emotional massacre of removing someone from the privacy and luxury of their own home to an institution, no matter how much safer it is for them. Understand, please, that it robbed me of years of sleep, loaded me with stress as thick and dangerous as the carbs and salt in a family size pizza, deprived me of common sense decision making for my own life, and saddled me with nightmares that segued into daymares – as if I could sleep at all. That was how my time was spent – worrying, second guessing, researching, and driving all over the place because of responsibilities to mom, to my family, and to the trust that paid her expenses.

She spent her time mulling as much as her disease allowed; otherwise she allowed me to function for her. I made myself present in her life, visiting four to five times a week, four to six hours a visit, doing everything I could to make her believe that her life hadn’t changed since her husband had died. A person with Alzheimer’s cannot grieve. They cannot process information or internalize new experiences and move on, they cannot abide by Elisabeth Kubler Ross’ routine. They cannot remember. My mom asked every day when he was coming back, and every time I tried to explain and provide a spiritual reference for comfort. It didn’t stick. So she’d ask again and I’d explain again or try to distract her or simply moan.

And this is where I stand today. Finally sobbing over the deaths of my parents. For while they did not die on the same day, they both died for me when my mom passed on March 30, 2018.

There is no cure around the bend for Alzheimer’s, only the deathly flatness of the road, like farmland tilled and plowed for hundreds of years, land made flatter and flatter as crop after crop is planted and harvested. Still growing tomatoes or corn or strawberries. Still researching and testing with no viable results.

It’s a long road ahead of me, full of trenches, crumbled surfaces, clutching mud. I face a perilous journey before I am fully able to forgive, apologize, move forward, to lay my head on their graves and know it will be OK. I am grieving now.

 

 

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.

 

Black and white image of grief courtesy CCO Public Domain

 

 

 

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Comments on: "The Terrain of the Long Road" (31)

  1. Bless you. Grief can tear you apart and then help to put you back together again. May the journey bring comfort.

    Liked by 1 person

  2. Dear Sharon,
    I just read this post now and need to re-read to take all in. Your story is so very
    upsetting and seemingly without comfort. There are a multitude of events to grieve and
    somehow it starts going through a fake facade childhood all through loss of parents
    in a cruel way.
    Whenever you can, throw bits of the pain away and tell yourself. I am alive! I can walk in
    the sun. Bit by bit. You are free, don’t let the memories tie you forever however horrid.

    I wish you a successful future for your book and you.

    miriam

    Liked by 1 person

    • Miriam, thank you for your wise words and kind support.

      Next week, I’ll share some of the unexpected happy moments of having a family member who suffers from Alzheimer’s. But this post is about grief after death. Though it is a very true description of what I’m going through, it’s also somewhat abbreviated. My friends who have suffered loss of spouse or parent – to Alzheimer’s or other situation – have suffered similar doubts and regrets. The first year after a death is the most difficult as we struggle with so many anniversaries that remind us of what used to be. I am healing and most importantly, my mother is no longer in the pain that marked her last year. Since I believe in the survival of the soul, I also believe that in some way, (I don’t presume to know how) my parents are reunited.

      Have yourself a good week, dear friend.

      Liked by 1 person

  3. oh, superbly written; and not just because the similes and metaphors hit home – clear in the reading mind and rooms where they happened – but because it is put-everything-down honest, because the honesty allows it to be your journey … thank you for sharing, so glad to have met more of you

    Liked by 2 people

    • I treasure your comment, M. Lewis, as your intellect and honesty shimmer in your own writing. Alzheimer’s leaves those at the side of the road stripped down raw. I wanted to share that feeling.

      Like

  4. I think this is one of life’s worst diseases. I am thankful I don’t have it in my family but I don’t think that really matters. My thoughts are always with you, Shari.

    Liked by 2 people

  5. Grieving is so important. Sometimes, I wonder if people realize how important it is. One must get as much of the pain out as they can. Reading this, I found it interesting how you started grieving for your father now that your mom passed.
    Also, didn’t realize it is already five months. Our time does pass so quickly.

    I hope you find peace in your heart. You will find the memories of your parents there. And they will always reside there. Hugs.

    Liked by 2 people

  6. Jenna Barwin said:

    Your blog eloquently captures the emotional devastation this disease leaves on the survivors. I feel for you, for your grief, for your losses.

    You’ve been a good daughter, take comfort in that.

    Liked by 1 person

  7. Resonating and empathizing with you once again, Sharon. I know the nightmares you’re having…. Me too. The reoccurring dreams. Won’t go into detail because I know you already know. It’s a slow, cruel death (Alzheimer’s) and the grieving is also long. But I’m there with you, understanding and offering you a sincere hug and heartfelt prayers – for both of us. Love to you, Sharon.

    Liked by 1 person

    • Thank you so much, Betty. It doesn’t take many steps before I reach someone who knows exactly what it’s like – Alzheimer’s specifically and death in general are that close to us. I know you understand that.

      Like

  8. I didn’t grieve over my father’s passing. He had dementia, or maybe it was Alzheimer’s. I wasn’t there to see the worst of it, but my brother was. There isn’t any love lost between my father and me. Yes, it’s sad, but I am so much more at ease now that he is gone. I know I’ll grieve for my mom. Despite her controlling and opinionated nature, her goal has always been to make my brother and myself the best we can be and be generally happy.

    Shari, your heart must be as big as all outdoors. You’ll get through the grieving and life, eventually, will get back to somewhat normal.

    Liked by 1 person

    • We each grieve in our own ways – there is no right or wrong way, no path that can or must be followed. There is no judgement or conclusion, no conversation that is final. I wish you serenity in your life, Glynis. Thank you for your last comment to me – it means a great deal.

      Liked by 1 person

  9. so sorry, dear Sharon — wishing you a good birthday — a turning of a new page into time for you. is there ever a death of a loved one (perhaps more so if they’re hated as well?) that doesn’t incur feeling guilty?

    Like

    • What a wise question, Daal. I’ll have to think about that, though I suspect many people feel guilty about what they’ve done and what they didn’t. We second guess ourselves all the time. I hope I didn’t give the impression that I hated my mother, because I didn’t. She and my dad had an incredible love story, one in which their love for each other took up so much space, there was very little room for anyone else. I felt so badly for her after my dad’s passing because though she couldn’t completely comprehend what had happened, she missed him terribly all the rest of her life.

      Liked by 1 person

  10. Thankfully, grief does come to you, Shari, regardless of when it got there. I still get a tear thinking of when I had my cat put to sleep a few weeks ago, knowing that I had the means to control the outcome. But to grieve both parents or to put off grieving, that is a whole other class. My mother in law and my mom are alive, both in nursing homes with dementia and other physical maladies, both far away (500 miles for mom, 700 for MIL). I can’t imagine you spent so much time with your mother and watched the slow decline of the disease. I’m sure they are in God’s eternity now and forever, whatever that looks like to you, and as someone commented, you are indeed free. A little birthday gift for yourself and us perhaps, to write and share this and help us to understand the eventuality of losing our parents. Happy birthday, dear Shari ❤

    Like

    • I didn’t see it this way, Terri, as a birthday gift to be free of the worries. Thank you for your insightful perspective. Yes, it is so hard to watch this decline but I do believe in the survival of the soul, and don’t much care about descriptions of it, scientific or literary. This kind of belief is meant to give us emotional relief and it does.

      So very sorry to hear that both your mother and MiL also suffer. Must make it difficult to turn your head – or to answer the phone. I wish them blessings of peace, and you as well.

      Liked by 1 person

  11. I wish I could say something deep and meaningful, but my throat is tight after reading this, tears brimming my eyes and all I can say is that I’m sending many gentle hugs and love, dear friend.I wish I could be there for you to help you through your grief by talking it just holding your hand. ❤

    Like

    • I’ve worried that this series of posts about Alzheimer’s is too depressing to read. Thank you for slogging your way through so much trauma. As for your support – Sarah, you send so much love and friendship this way, you have no idea how much it means to me that you’re here in spirit. Thank you.

      Liked by 1 person

  12. I pray you are taking the time you need and deserve. My heart goes out to you, my friend.

    Like

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