The Terrain of the Long Road

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

 

 

 

For Those We Love

We begin by wailing and sobbing, harrowed with grief over our loss.

We pray for the one who is gone, for we who are left behind, for those who will acquaint only in story.

We beg answers to questions never resolved except in metaphor, thoughts that weigh more than the sum of their words.

We make fists, then open palms, hold hands, and grasp shoulders, swaying as a group so that none fall.

We share memories. One is spellbinding. One is provocative. One is a revelation. One is tender. One makes us laugh.

Our tears dry while the sorrow rises with our amens and we step forward. The first step hesitates, the next holds ground, then we lose count.

We will never forget but we move on but we will never forget.

There is an order to paying tribute to those who have passed. The order controls the bedlam that otherwise imprisons us.

It allows a semblance of freedom from unrelenting despair so we can return to order.

Today, though, I am harrowed with grief.

 

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Photo of girl courtesy of CC0 Creative Commons

 

This is the Wrong Post

I planned to write about the majestic launch of the SpaceX Falcon Heavy. I didn’t want to write this story.

I’m mad. Angry and insane with grief. I want to throw the computer across the room, tear out the plastic cartridges that hold the ink, drag the printer down the street till it shatters into a thousand pieces. Then I wouldn’t be able to tell this story.

This is a story of death. Four people died this past week. Four people I know and love. The doctor, the mother, the judge, and the animal rescuer.

The doctor was the father of my friend. I taught my friend’s children at our temple. She proved to be a parent on whom I could count to bring cookies, to call other parents, to compliment me on the lesson. She made sure her son and daughter were well prepared. We shared confidences. I looked up to her as someone whose low key demeanor belied her inner strength. We spoke often about our dads, each of us proud of these two men who were family physicians – heroes to us. I don’t know about her genetic inheritance but it is evident her father impressed on her a strong work and community ethic. He raised a good person who became a good friend to me. My hero has been gone nearly ten years. Now hers is gone also, a tragic catch-up of circumstances.

The mother lived at the memory care residence where my mother lives. Her daughter is my friend. My friend’s mother bequeathed her remarkable beauty to her daughter, also her grace and composure. My friend’s mother did not speak often but she always looked at me with a smile and sparkling eyes. She and my mom shared meals together, afternoons of music, discussions, or games, and casual walks around the gardens, happy to be in each other’s presence. I’m not certain my mom will realize she’s lost another friend. When you have Alzheimer’s, it’s the blessing of the disease that you cannot remember who your friends are or when they are gone. I’ve been holding my friend’s hand as she remembers her mother before the disease.

The judge was a family friend. Forty years ago, his mother- and father-in-law danced with my parents every week. Thirty years ago I drove his older daughter to Hebrew school with my son. Fifteen years ago he married my older son to the loving woman who bore our two older grandchildren. Ten years ago, his younger daughter became friends with my nephew at the party we threw for my parent’s sixtieth anniversary. Two years later my father, the doctor, died. The calendar marched in step with the moments that annotated our families’ lives. Important moments in three generations were shared as if we were family. In a few days we will bury the judge only a few yards from the doctor’s grave.

It is the final death, of the animal rescuer, K, that is killing me. She died last night after a nearly five year battle with very aggressive cancer. My younger son’s wife, our daughter-in-law, has lost her mother. She treated my son as her son. My younger grandchildren have lost the woman who watched them every Wednesday so my daughter-in-law could work. She got to know our shared grandson, now four, and our shared granddaughter, only two. She underwent surgeries, chemotherapy rounds, and traditional and experimental drug protocols, trying to find a cure, or at least gain more time.

When K was well she ran a wild creature rescue service. She was respected in her community as a fiercely independent spirit with an intellect as bright as lightning. She had many, many friends. She and her husband were active in their church, and lifelong advocates for social justice. I only got to meet her a half dozen times as they live more than a ten hour drive away from us. Not the kind of situation where you can drop in on someone frequently. But I enjoyed every moment I got to be with her.

She struggled. We prayed. I wish she’d had more time – for all of the family, more time. I grieve for my children and grandchildren whose grief is unbearable.

At the end of the evening, a few hours after hearing of the deaths of the judge and the animal rescuer, when I thought I’d shed all the tears my body could muster, we watched NBC’s  This Is Us. It was the episode about the funeral of the father. A TV show, reminding me of four actual upcoming funerals. From the launch of a rocket to the funeral of a television character, the day has collapsed from elation to sorrow. I really didn’t want to write this story. Please imagine something majestic.

 

A Hopeless Dawn by Frank Bramley, image courtesy Wikimedia Commons.

Prayer

At the beginning and the end of all the grief of loss of someone we love, whether to death or to Alzheimer’s, is a need to figure out how to go on living for those of us left behind.

First to rage.

Next to pray.

Then to forgive.

Finally to turn the earth for a garden.

 

 

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Memory of the Garden at Etten by Vincent Van Gogh, 1888, courtesy Wikimedia Commons.org