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.

 

 

 

 

 

 

The Empty Chair

What to do at the holidays when there’s an empty place at your table.

It was the opening statement in a letter offering coping advice when you’re grieving the absence of someone you love. A list of practical strategies meant to give relief to the ache of facing that empty chair and missing the person who’s supposed to sit in it. Who used to be there at all the holidays.

Thing was, I didn’t need the advice. Not this year at least – I needed it ten years ago when my dad died and left me with the responsibility of caring for my mom. When I found she was not in early stages of Alzheimer’s disease, but well enmeshed in the illness that was destroying her brain. When I had to have her declared mentally incompetent to make lucid decisions and remove her from her home for her safety. When I had to delve into her finances, her medical needs, her social obligations, and supervise every aspect of her life, all while hiding out in the guise of her little girl because she was – the Mom.

That first year after my dad died was the Year of No Celebrations. I missed every single holiday – federal, religious, personal, greeting-card-nonsense event. I got sick – pneumonia, bouts of cold, flu, bronchitis – as well as being the default contact for crises and emergencies. I slept with two phones next to me, frequently jolted awake by a call from the nurses at the residence where Mom lived. Every holiday was a calamity to endure, leaving not a flick of a second to celebrate. Leaving me tense and exhausted, afraid to see the dawn, fearful of the night. Nine years of dealing with the effects of Alzheimer’s, but I am no hero. Millions of other family members live this way, trying to find a safe route through a maze with only one outcome for the ill person they love.

My mom died nine months ago, in an assisted living residence devoted to caring for people with progressive and unrecoverable memory lapses. After my dad’s death, I frequently took her to our home for the usual holidays, and she participated in the family gatherings. She read to her great-grandchildren, laughed at the stories and jokes, ate momentous amounts of food because that’s what we do at family gatherings. But the changes were obvious and painful to watch. She could answer questions, sometimes just to acknowledge that she couldn’t remember a detail, but she could no longer initiate conversation. She could react but not act.

Over those years, Mom’s memory fractured and fizzled as we knew it would. Bringing her to family celebrations at my home became more and more difficult. To discuss why would betray Mom’s privacy, and I’d vowed not to do that. Four or five years ago, the situation declined into impossible. I couldn’t watch her every second as she turned my house into tumultuous residue from her condition. She didn’t act with malice but with mindless energy. This is what Alzheimer’s does.

After dad’s death I felt like a battleship trying to barge through a pinhole. More accurately, a sob soaked wad of tissues attempting to dry up the desert. For the first three years, driving up and down the California freeways to the residence where Mom lived, to her attorney’s or accountant’s offices, to the mall to shop for her clothes, I cried and raged at the injustice of so much to do and no past experience from which I could draw. Every encounter was a new one, every crisis unpredictable, every visit with Mom another failure to communicate.

Friday evenings at our temple I said the Mourner’s Kaddish for my dad, tears streaming. Synagogue was a safe place to cry – the other congregants understood. They surrounded me with their arms and their comfort. Kaddish is an ancient, exquisite prayer in the Jewish tradition. It’s recited while remembering those we’ve lost in the past year, but not one word has anything to do with death or human beings. It’s a prayer that extols God’s virtues and greatness, reminding us that after life, there is the World to Come.

Crying, screaming, driving, reciting Kaddish. This was how I spent my three years of grieving.

I didn’t have time to indulge in a grief support group though I participated erratically in an Alzheimer’s support group. Erratic not because the dissolution of keeping to a schedule is my nature but because it’s the nature of the disease to flummox every situation. Don’t plan ahead except for the advent of chaos, the world shaken like an abused child – and with the same ultimate effect of unimaginable damage.

Our table has been reduced these last ten months and the ten years previous. My parents are missing. But our home is surrounded by photos of those we love. It is saturated with their presence. My sorrow ebbs day by day, but capriciously – a reminder here of how my mom cooked spaghetti that was better than mine, there of how my dad spoke wisely about how to better parent my sons . The lacy blouse I nearly bought Mom a month after her death, the scent of a flower recalling the rose garden Dad lovingly tended. The dream when they stood by my side and we watched the sun set over the Pacific, all of us at peace, seeing future.

I won’t refer to the coping advice generously offered by the grief support group when my family celebrates the seventh night of Chanukah this coming Saturday. As I look at the chairs where my parents used to sit, I will not mourn the vacancy. Their places are filled with my memories of them and always will be.

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.

Photo courtesy Bonin-Pratt family archives: Sharon at 3 with both of her parents.

The Broken Brain, the Healing Heart

My mother suffered with Alzheimer’s for the last years of her life. She lived in a residence with hundreds of other folks who had memory loss. One was a wonderful man I’ll call Ben. Ben had been an artist before he became ill with Alzheimer’s. An intelligent, talented man who worked in various media, he pursued art as a passionate avocation all his life. He continued to create beautiful watercolor paintings all the years he lived at the residence.

As an art teacher for many decades, I explained to my students that creating art was an experience of Head, Hand, Heart – our class motto.  The Head is what we know or see of our world, the Hand is the education about color, composition, and holding a paintbrush.

The Heart is the most important element. This is where a master artist transports the viewer beyond the canvas or marble into his vision, where his creative impact lifts an ordinary entity into something luminous. Who doesn’t stand with their mouth open at the sight of Michelangelo’s Pieta, of Vermeer’s Girl with a Pearl Earring, of Georgia O’Keeffe’s Oriental Poppies? The allure of the intuited essence of life emanating from these masterpieces resonates with viewers. We hold our breath for a moment of sacred transcendence.

Who doesn’t stand with their mouth open at the sight of a toddler’s first drawing of a person, a wobbly roundish shape with eyes and mouth, arms and legs sticking out from the face like misplaced star rays because the body is missing. It isn’t that the body is actually missing, but what’s most striking about people to the youngest child are the very features she’s drawn. She’s skipped the unessential – the corpus – and gotten right to the crux of what informs her world – a face with its multitude of expressions, the limbs with their ability to move. Her Head and Hand are still learning but her Heart is in full mastery of its skills. We hold our breath for a moment of sacred transcendence.

You must understand this in order to grasp the following story about an artist betrayed by mental infirmities.

My mom and I frequently participated in the art programs, where we often worked beside Ben. I especially enjoyed watching him paint as every move was deliberate. He contemplated each stroke, color, and detail. I wondered if he’d worked with such thoughtful resolve even before he became ill with Alzheimer’s, or if the disease imposed a handicap that was a new challenge to his creative outlet. Maybe when younger and healthier, he’d painted quickly, though I suspect a precise focus had always informed his art.

As Ben’s physical health declined and the Alzheimer’s tortured his brain, painting became more arduous for him. He had a harder time concentrating and sometimes couldn’t make a decision about what color to use or what area to paint next. Even choosing a brush and lifting his hand demanded attention his brain didn’t willingly allow. Each move became an exercise in willpower over limitation.

His very last painting was of Monument Valley, the iconic desert in Utah. He used a photo as a reference and started with realistic images of the familiar tall buttes and the flat topped mesas in burnished shades of gold, orange, and brown. Over the weeks, as he became more ill and confused, the layered sandstone structures mutated into city skyscrapers with windows, doorways, and rooftops. Even his colors changed to ruby, emerald, and sapphire. The painting looked like two disparate images randomly assembled: a sublime southwest desert vista on the left, a garish and frenetic eastern megalopolis on the right.

Ben died only a few days after he’d completed the painting. His family disliked it and nearly didn’t take it with them. I explained how Ben had struggled to interpret the desert photo and finally decided he was looking at modern city skyscrapers. Advanced Alzheimer’s made a mockery of the man but the artist fought back with his will to create. They realized that the painting was less an anomaly of artistic expression and more a visual demonstration of how the brain declines but also re-imagines the corporeal world. With tears dampening their cheeks, they took home the painting that graphically displayed Ben’s deteriorated brain, knowing his Heart had been intact until the end.

We hold our breath for a moment of sacred transcendence.

 

Monument Valley photo courtesy of Pixabay

My thanks to Peggy Bright of Australia who writes Where to next? blog, for the memory and inspiration for this article.

 

 

 

 

 

The Minefield of Alzheimer’s

No one steps into the world of Alzheimer’s with aplomb and grace, knowing just what to do. We lurch into the minefield of a war without possibility of victory or truce, pleading for an advocate to help us avoid stepping on bombs. Then we find that only surrender is possible, only blood on the sleeve. Yet on the battlefield of this disease there is a way to dismantle the bombs.

 

We who are the family of those who suffer try to placate and offer solace, but we are also victims. There is no manual with step by step procedures. Yes, there is information, and you should avail yourself of all you can find. But it is likely to show a huge blank in just the area where you need advice, because the person we love is not a perfectly fitting cube in a bin.

 

If we are very, very lucky, one person steps up and says, “Let me help you find a safe way forward.” I had the comfort of that person’s presence, someone who showed me strategies for dealing with behaviors I didn’t understand and a parent I didn’t recognize, one who didn’t recognize me. Now I strive to be that person for others. I am no expert, not a professional in the field, but am good at directing. If you have questions, ask, please. I can show you the way.

 

You will still sob and raise your fists, you still won’t sleep at night. But you will bring joy to the person you love and sometimes you will both laugh. It will be those moments you live for.

The end is tragically assured but the journey is everything.

 

 

Just a thought 53

 

 

Image of aged woman courtesy Max Pixel

Image of aged man courtesy of Pixabay

 

The Calm after the Storm

I broke down in the supermarket the other day, in the greeting card aisle, looking at Rosh Hashanah cards. This will be the first year I observe Jewish High Holy Days without either of my parents. Just seeing the cards wishing peace and a healthy year to come tore me apart.

Other things unexpectedly lance my gut – the scent of coffee as both my parents could not face the day without a cup or two. The sight of the ocean as we’d lived near the Atlantic on the New Jersey shore or the Pacific in both Hawaii and California. The chirping, twittering sounds of birds as my dad ushered us through rain forests and woods, identifying avian species. The feel of hot wind against my skin, recalling the clutch of Alabama’s unforgiving broiling weather when I lived there as a kindergartner. Pierced constantly, I bleed all over the place.

I look at a pink blouse in Macy’s, thinking how much my mom would like it, maybe I should… then it comes back to me – no need to buy it for her. The same effect on spotting a new crossword puzzle book at CVS, solving puzzles together a favorite pastime when she was alive. The Alzheimer’s that held her in its long noose for so many years is finally over – she passed in late March. Still my emotional pain is ebbing – mom is no longer in the horrific physical pain that stalked the last year of her life, and that’s a good thing. My blood stanches.

I dreamed of my parents standing next to each other, gazing at the Pacific. Their last home was a condo that overlooked the ocean, nothing in front of their window but train rails along the beach and the swelling turquoise sea. My dad had one arm around my mom, the other around me, united again at last.

I know our dreams are personal manifestations of the world as we experience it, filtered through our sleeping subconscious mind. Still, I felt tranquil in that moment, knowing I had done everything I could to care for my ill mom in a way my dad could accept after he died nearly ten years ago. I believe in the survival of the soul – my dream might be a message from the world to come, from the sacred essence that survived the deaths of their corporeality.

Over the last decade, I’ve had a loving, supportive family holding me up. A son and daughter-in-law moved aside like cars in the way of a fire truck, allowing me respite with their two children. My grandchildren, who loved their great-grandmother, not realizing she was ill. She was their Gigi, and they accepted her quixotic inability to remember their names, always knowing she would shower them with kisses and hugs. My grandchildren softened the shredded edge of my worries with play, stories, and antics that allowed me serenity.

Another son and daughter-in-law, living far from us, knew when I needed a phone call. The cell tower network (we are so very fortunate to live in an era of global communication access) leap frogs hundreds of miles so I could contact our two youngest grandchildren. I listened to their baby talk until their babbling chatter over the years became words, then sentences, and finally full throttled conversations about dinosaurs, gymnastics class, and the funny bugs in the yard. To be immersed in such presence is a holy moment.

My husband put up with my despair and commiserated about the injustice of a disease that dismantled my mother’s social and logic skills. He endured me fuming about the legal, health, and financial worries that woke me in the middle of the night like lions hunting on African grasslands, the threat of attack imminent. A husband who visited his mother-in-law without a prompt from me, always with a fresh bouquet of blooms to remind her that she was someone important to him, even when she no longer had any idea who he was. He soothed me back to sleep.

Friends inflated a flotation jacket around me, keeping me from drowning. Some are people I’ve known forever, living near enough for a hug fest, others only close enough for a sobbing phone call late at night. My friends are a bulwark of ears and shoulders, one limb to turn my verbal outrage into sense, the other a net to catch my emotional free fall. Many are family members of other sufferers of Alzheimer’s. We are an alliance of wisdom and folk stories about how to limit the devastation of the disease, both the physical impact on those who are ill and the emotional toll that forces family into no man’s land. All of it is about loss, confusion, and righting a leaky craft. They remain steadfast for me as I do for them.

Alzheimer’s is a shipwreck foundered on alien shoals. But I am learning to jump ship, skip the waves, and wade in the shallows. To smile. To sleep through the night. To feel the consolation that my parents’ long journeys are over, that mine will be an easier trek each new day. There is laughter again, friendship, love, family, and calm after the storm.

 

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.

 

Image of California coastline courtesy of Pixabay

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

 

 

 

From Art Caves to Alzheimer’s

 

This is the story of how a book about World War II sealed the friendship between me and the woman who gave me the courage to write Where Did Mama Go?

It begins with The Caves of Perigord by Martin Walker. I read it because it describes some of the prehistoric cave art discovered in France, a topic this artist and art teacher has always found fascinating. The exquisite shard of ancient art is only a part of the story, as the novel reveals the dangerous work of the French Resistance during World War II. When I finished the book I gave it to my friend, Madeleine Nussen.

I was a novice Hebrew teacher, barely two weeks ahead of the kids in skills. Madeleine was experienced and fluent at the same temple school, and she graciously mentored me when I got stuck, which was about once a class. After she read the book, she told me something I hadn’t known.

The book tells in part how the Nazis forced French citizens to sit on the front and top of reinforcement and supply trains in order to deter the French Resistance from bombing them as the invaders subjugated France. Allowing the trains to pass meant a more likely victory for the Nazis, but sabotaging the trains meant certain death for those who rode the trains as hostages.

Madeleine quietly relayed her personal story when she returned the book. She was a Holocaust survivor, her father a fighter with the Resistance. At least once, teenage Madeleine sat on the actual train, exposed and vulnerable. Her father saw her and did not bomb the train.

I knew of course the historical foundation of the book. But that moment when she described her part as a hostage, the enemy trains stormed around us. The wind roared like a cyclone, the acrid steam burned my face. A story that would have made me screech in fury, she relayed with her trademark composed dignity.

A few years later the temple held a dinner my husband and I attended with my parents. My father had quietly told me a family secret I was forbidden to share. I kept the promise. My mother, always a gregarious showstopper, made instant friends with the four other guests at our table, which included Madeleine. My mom loved the limelight and the event gave her the chance to perform. Mom chattered as deftly as if holding court, the other guests enchanted by her. My father expressed irritation after a while, and mom quieted down.

Months later, I noticed Madeleine looking weary, an emotion she rarely conveyed. When I asked if everything was OK, she told me about her beloved husband, also a Holocaust survivor and a renowned cantor. Now he was living in a facility for those who suffer from Alzheimer’s disease, losing more and more of his identity and sense of presence every day. Madeleine was devastated because his most recent decline meant he no longer knew who she was – nor who he was. The Nazis had not defeated him, but his illness had.

It must have been because of Madeleine’s dignity that I felt comfortable enough to tell her my secret, despite my promise. “My mom has Alzheimer’s.”

“I know,” Madeleine said.

In the hallowed quiet between us, I realized she had spotted my mom’s illness at the dinner party. What my father and I thought was hidden as long as we told no one, was easily detected by Madeleine with her long experience in dealing with her husband’s disease.

Over the next years, Madeleine was a willing listener to my concerns and worries. Sometimes she gave great advice. Sometimes she just listened and let me vent my frustration, confusion, and rage. Always, she was a friend who kept my confidence and my mother’s secret.

My dad died nine years ago, my mom’s disease still so well hidden that some family members didn’t detect it. At his death, it became obvious that mom could not live at home, and I made the heartbreaking decision to place her in a memory care residence.

I regret my action every day of my life because it forced my mother out of her home overlooking the Pacific Ocean into a locked facility. There was no other way to keep her safe, to have her needs met 24-7 by a compassionate, professional staff.

I was already writing novels long before my dad passed, but my stories had nothing to do with Alzheimer’s. It took all my strength to deal with my mom’s mutable and fractured condition. I often drove to the residence in tears, knowing the woman I headed to visit was losing parts of herself as if she were a pillow ripped open, feathers strewn to the heavens. I often drove home sobbing about how the disease attacked my mom and left her tattered. I was too close to the volatile situation to be able to write about it, so I never tried.

Madeleine passed away about three years ago. Her death was painful for her family and friends, her loss palpable as a burn on flesh.

About two years ago I realized I knew more than many other people who needed, sometimes desperately, to find a safe place for mom or dad or husband or wife to live. Their loved ones who suffered with Alzheimer’s. I consoled, gave advice, and listened to the newbies, all of them wondering if they had made the right and the best decision.

Eventually I thought of Madeleine’s courage. A survivor of the Holocaust who had started her life again in a new country, a loving daughter, wife, and mother, a talented musician, a gifted teacher, and a compassionate confidante, she modeled for me that not only could I tell this story, I could show that living with this disease is miserable but possible. That being an involved advocate for the one you love is more important than making the perfect choice because there is no perfect choice.

Madeleine never knew I wrote a story about Alzheimer’s, but without her friendship I might not have done so.

Madeleine Nussen, zt’l. May the memory of this righteous person be a blessing. Thank you for giving me the courage to write Where Did Mama Go? I miss you but I carry you in my heart.

 

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. 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.

 

Prehistoric art, Bison, Altamira Cave in Spain, courtesy CCO Creative Commons

 

Coming Back to You

I’ve been away from this blog far longer than intended and was not sure how to return. Still sitting here in my house working at the computer, but not here on the blog. What do I say to those of you who’ve stayed in touch and sent notes of encouragement while maintaining the respect not to ask what’s taking me so long? How much do I reveal, how much do I keep private, even secret?

A long list of topics and partial articles waits to be written or completed. My anemic advice about writing, my head-over-heels book reviews, the Just a Thought series, and the longer articles that peek into my own history or divulge my current interests and run parallel to the subjects of my books. Same-same as what’s been on this blog in past, just more of.

I had a mom who suffered Alzheimer’s disease but my promise to her was to not write about her, her dignity and pride to remain private. “My Mom” in all my articles was someone else’s mom – or dad, husband, wife – in disguise. You don’t know my mom because she wouldn’t have wanted you to see her like that. So I promised her you wouldn’t, even though she was unaware of the promise.

I really wanted to write more on what I’ve learned about Alzheimer’s disease as an observer, as an anecdotist. My studies are personal and also lies. Personal because I sat by her side, watched, listened, interacted, cried, and pondered. Lies because when I told you stories about Mom, I made them up.

You might have figured out that Mom is deceased. Yes. All I’m going to say. Except…

This was not what I imagined when I first announced my Quiet Time. I thought I’d actually have an extended period to contemplate and reconsider, to rewrite my direction, to refocus Mom’s attention.

Death has its own way of reorganizing priorities. Instead of planning new activities geared to Mom’s newest state of presence, I planned a funeral, a shiva, a way to say good-bye, a propensity for getting lost, a need to be forgiven, and a means of going forward.

Today Mom would be 90 years old. A good gift for a 90-year-old might be a coupon book good for snuggles and kisses and walks in the park. A new blouse and a fragrant bouquet of pink peonies. A candlelit cake to defy dietary restrictions.

In Mom’s case a perfect gift would be a memory she could hold on to. Something from her childhood, like the day she glowed in the class spotlight for the story she’d written. Her first kiss, tasted years before she met my Dad. A new dress purchased with money she earned at her teenage job at the five and dime store. Any memory would do, even something I exaggerated or made up. Just to give a memory to someone with Alzheimer’s is the most incredible gift one can imagine.

Pay attention to that word incredible. Its weight throws the scale into panic, its force throws the dike wide open. Memory is the first lost cause of Alzheimer’s disease. Victims make up their lives anew and family members learn to play along because arguing in favor of truth never aligns with reality.

The ninetieth birthday party wasn’t necessary. Mom almost but in the end didn’t get that far. There will be no cake or gifts or photos. Mom was buried in the white lace blouse she would have worn to her party. She looked beautiful, and this I’m not making up. She looked ready to get up and blow out those 90 candles.

I’m coming back now. Back to writing on this blog. Back to writing books, querying agents, pleading for mercy, and all the other mishegoss on the potholed path to publication.

Back, to see Mom in a new light. Happy Birthday to you, Mom. I’m celebrating your life today.

Love you, Mom.

Miss you.

Shari

 

Photo from Bonin-Pratt family archives: Mom, Dad, me at 4, baby brother, Hawaii 1953

 

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.

Rage and Reason

Candace asks for another cookie and when denied because it’s so close to dinner time, she wails the annoying cry recognized the world over as brat syndrome. She’s two and a half years old, and her self-centered demands come with the territory of preschoolers.

James also asks for another cookie and when denied because it’s so close to dinner time, he lets off with a string of foul language demands. He’s eighty-seven years old and his unfiltered anger comes with the territory of one who suffers from Alzheimer’s disease.

Candace will grow up to become an engineer or a software developer or an astronaut. James* was a Major General in the United States military, and worked at NASA developing critical rocket defense systems. I sobbed at his memorial because I’d never gotten to know the brilliant man in his prime and only met him when the disease that eventually killed him had reduced him to behaving like a toddler.

You may think that Alzheimer’s only affects those with a low IQ, or who eat like sumo wrestlers, or who lie around on the sofa all day clicking the remote and guzzling diet sodas. It doesn’t. It’s an equal opportunity monster that drags victims from every demographic and forces them into the pit of loss of executive function. Loss of every human function. When we discuss the disease, we’re talking about traumatic brain dysfunction moving people backwards. We forget their achievements and focus on the bathroom problems, the odd clothing choice problems, the inability to communicate effectively problems. We focus on the problems because they are always front and center.

Pearl walks out of the dining room, her purse stuffed with essentials like socks, a scarf, comb and brush, and bedroom slippers. She has only taken a bite of her lunch but now stands at the reception desk of the community residence where she lives insisting that her daughter is coming to take her home. The receptionist reminds Pearl, for the fourth time (the seventh, the fourteenth) that her daughter went home after visiting in the morning. Pearl curses the receptionist, declares her daughter doesn’t love her, and wants to phone the police to complain about the service at this awful place. I ask if she’s had dessert yet. When her eyes open wide at that word, I lead her back to her seat and encourage her to take a bite of her meal, promising that she’ll have ice cream soon. She’ll be up in another minute or so, back at the front desk demanding to phone her daughter and insisting she doesn’t live at this place. I know she does – she’s my mom’s roommate.

Gladys’ hair is coiffed in a silver cap of curls, her jacket and slacks are highlighted with a string of glass art beads, her pedicured toes peak out from open front silver flats. She was a model when younger and walks with grace. A few days ago she mumbled unintelligible speech to me and I answered with pleasantries suited for any occasion. I wasn’t prepared when she quickly got up from her chair, cast me a look of fury, grabbed my coffee mug, and tried to throw it at me. I managed to hold on to the mug so only a tiny bit of the hot brew splashed on another resident. Her husband has told me she owned her own business for more than two decades and made decisions that her employees complied with.

Melvin wants to go to the bank. He’s concerned about his taxes and shows me his briefcase. Inside are a blank yellow legal pad and two pens. He asks if I know the bus schedule so he can be on time. I take his arm and lead him to the table where a jigsaw puzzle is half put together. We sit down and find a corner piece and two other pieces that fit together. When I leave five minutes later, he’s peering intently at the puzzle and holding pieces in each hand, trying to figure out where they fit. His briefcase sits on the chair next to him, his taxes forgotten. He used to be a high school math teacher much beloved by his students.

This is the everyday world of Alzheimer’s sufferers. It’s a realm of behavioral inconsistencies – from intelligence to gibberish, from reason to meltdown, from joy to confusion, anger, and rage. Those of us who love them, family members and caregivers, struggle to engage and care for them. We try not to raise hackles, to antagonize, to remind them that they should “know better.” It’s we who must know better. We sons and daughters, husbands and wives, have become their parents and bosses. We hate the job.

I will always remember James, the man who was involved in our space program at NASA. The man who had become a child by the time I met him but who always greeted me with a smile. I remember all of the men and women who once were someone else.

 

*James, like all the residents whose lives I’ve presented here, is based on a real person whose true identity I will not reveal.

 

Note: I’ve written a novel, Where Did Mama Go? about the devastation Alzheimer’s 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 sixteen years of assisting my mom through the labyrinth of this illness.

 

 

Photo of pier and ocean courtesy CCO Creative Commons, not requiring attribution