Sparked by Words

Posts tagged ‘Alzheimer’s disease’

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

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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

 

 

 

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

 

To Grandmother’s House We Go

We’re trying to get to Grandmother’s House. We’re trying to take her home, even though she’s lost.

Those of us who love and care for our family members who suffer with Alzheimer’s disease know that when they say they want to go home, it’s unlikely to be the last place they lived. Because they probably can no longer remember that more recent place, and taking them there may instigate even more despair for everyone. Grasping their desires is a moon shot from making them content. They want to go back to when they were seven and felt safe with their parents; to when they were sixteen and flirting with independence; to when they were twenty-four and exploring young adulthood; to when they were thirty-two and involved with marriage, children, and mortgages; to when they were fifty-eight and celebrating the birth of a first grandchild, a  child’s marriage, another’s college graduation; to when they were sixty-four and enduring their final career years; to when they were seventy-eight and Alzheimer’s knocked down all the retirement ideas they ever thought possible. All of their life collapsed like a block tower that can’t be rebuilt.

The holiday season arrives wrought with expectations and memories that tangle our celebrations by not meeting our high hopes. No matter how much we declare not wanting presents, parties to attend, and over-the-top fashions, if we’re caring for someone who is ill, we’re likely to have our plans changed, our hopes derailed, and at least one event cut short by a crisis. Tears, anger, aggression, bathroom accidents, bathroom refusals, eating problems, repetitive motions and comments, sleepiness, anxiety, total confusion – they all show up like a beggar at our feet. It isn’t Grandmother’s fault. It can’t be, because someone ill with Alzheimer’s is no longer in charge. The disease is in charge – peculiar and heavy handed, blistering with fever and glittering with promises that can’t be kept. I hate you, they say, I love you. You must not love me or you wouldn’t leave me here. I want to go home. And we, the accused, we cringe and cry and dig our nails into our hearts. We have to leave you here at this assisted living residence because we no longer have the strength or skills to care for you “at home.” Their home, our home, someplace other than the residence where they reside – we can’t.

My friends and I discuss whether or not we’re bringing mom (or dad or our spouse) home for the Christmas Day gift exchange or lighting the Chanukah menorah. If we’ll instead replicate the event at the residence where they are cared for by professionals, then abide the guilt of the empty place at the table, the missing voice of the blessings. Can we enjoy the home celebration when they aren’t there, the absence painfully obvious but so much more sane because they aren’t? Will the rest of the family blame us for their inclusion or exclusion? Will extended family support our decision, knowing we’re crying either way?

We do what we can to reconstruct the holidays and celebrations of the times when we were younger and our loved ones were healthy. Some create second weddings so dad can be present because he couldn’t attend his daughter’s nuptials in Arizona. Others arrange for a caregiver to bring grandma to three hours on Christmas morning so she can see her great-grandchildren unwrap gifts. I’m facilitating a Chanukah dessert party at the place where my mom lives, for her, the other Jewish residents, and anyone who wants to stop by for a cookie.

We put together albums with name tags on the photos so our loved ones whose minds are drifting in and out of reality can identify their spouses, their kids, their closest friends. We collect mementos for the shelf in their room, things they can hold and turn in their hands – the carved shell from the anniversary trip to Hawaii, the bronze award for signing the most contracts twenty years ago, the lifetime membership pin for the service organization to which they’d devoted so many years of altruistic fervor.  We coax them to recall names even when they forget them ten seconds later. Even when they are our names. Even when it’s hopeless.

These are the waning years when their moon has left its natural orbit and traverses an alternate route through space. We try to fill their mutilated minds with lifelines and safety nets and touchstones, hoping for memories to be lastingly imprinted. But it is only on our memories they’ll survive, and we wearily know that too, the failures of all our efforts. My mom’s brain will continue to retract, to default to a younger and younger self as she seeks familiarity.

And I’ll find solace in my memories of the occasions when we all gathered to light candles and say blessings for the wealth of our lives. When Mom was well a very long time ago, when my dad was with us. We take our ill loved ones to Grandmother’s House wherever it might be, and there we wait, praying for a few moments of shared joy and the flicker of recognition that makes all the work worthwhile. See you at home, Mom, see you at home.

 

 

Note: I’ve written a novel about the devastation Alzheimer’s forces 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.

 

Image courtesy Pixabay

Five Across, Four Down

That which we encounter everyday should be that which we celebrate. That which we celebrate can be that which teaches us how better to do what we love. And that which we love can inspire us to write, even when we think our inspiration took off with the last Mongol invasion of Central Asia.

Crossword puzzles occupy a lot of my time, especially true in the last eight years. I don’t have an obsessive love of crosswords, but my mom always did. A pop-in visit to see my folks was as likely to be met with the urgently asked, “What’s a seven letter word for something important?” (gravity) as a heartfelt, “Glad you came by.” Right there, the beginning of a story for NaNoWriMo. Whose mom wants the right puzzle word more than a visit from her progeny? Yours, course. (Well, mine, but you know what I mean.) You thought you were empty headed, completely bereft of words to fill a book, and yet right in front of you, there they are: words a-plenty. Just have to pluck them from her puzzle and plop them into your 50,000 word story.

After my father’s death, crossword puzzles became a link between mom and me, one of the essential strategies for keeping her Alzheimer’s diseased brain as highly functioning as possible. We work them together, and I’m still amazed that she often knows answers I don’t. (Clue: Precedes while. “Erst,” she said. Oh yeah, erstwhile. Now I get it.) These clever word games have taught me a lot in eight years, skills I didn’t know I needed but now seek to augment as much as possible. The more I sit beside my mom, helping her focus on crossword clues and answers, the more I learn about writing. There’s another NaNoWriMo story waiting for a keyboard, should I want to use it: cross word puzzling through mom’s illness. Sort of a mental travelogue.

Patience, spelling prowess, trivia knowledge, peculiar humor, vocabulary building, archaic words, unusual context, flash fiction, courage, tenacity, personal relationships – all these are benefits of doing crosswords. All are applicable skills for writing.

I’ve developed the patience to work at solving a puzzle even when I know the answer is in the back of the book. There’s a certain satisfaction when mom and I complete an entire puzzle and we haven’t cheated once. She contributes about one tenth of the answers, an amazing fact given her condition. The rest is up to me and I’m often stumped. I lean over the book, staring at clues and wondering what could have possibly been on the puzzle creator’s mind to have written such an obscure clue. Kiln: oast. She knew the answer and spelled it correctly. I didn’t. (By the way, beer lovers, did you know that the hops were dried in an oast? What interesting trivia we gather in puzzles.) By the time we’ve finally completed the challenge, I’m thoroughly pleased for having stuck it out. Mom beams. I write a personal note across the top of each puzzle to its creator: Harry, can’t you find any modern words, or, You’ve got a sense of humor, Martha, a wicked one, but humor all the same. Mom loves reading the notes later in the week so I make sure to write one every time. My silly comments make her smile.  My writing has an appreciative audience. I value whatever readers I have.

Puzzle solving teaches about unexpected humor. Most crosswords incorporate several clues related to the title. “Rare Gems” clues included 20 across: Unpolished. No spaces between words, no hint about how many words needed, and the answer: diamondintherough. The clue for 30 across: Had an appetite for Lillian Russell: DiamondJimBrady. The last clue in the gem category, 40 across: Faceted field: baseballdiamond. I groaned that it wasn’t a fair clue, but mom reminded me, “It’s just crosswords.” I grinned. She was right, and it was funny to think about diamonds in so many ways. Rare gems indeed.

A writer needs a broad vocabulary, an internal thesaurus stuffed with words to suit every occasion. Especially useful for me was the reminder that rectos are “right hand pages” (the answer to 14 down,) and then I remembered that left hand pages are verso, which brought me to recall that a leaf is paper with two sides. Yes, all paper has front and back, but a leaf has writing on both sides. Now I’m on to leaf with all its meanings and applications. Every tot learns to gather leaves as soon as she can toddle outside, but leafing through a book has more to do with recto and verso than biology. Leaf sounds poetic to my ear while bract is emphatic, frond drifts in the breeze, pad sunbathes, and petiole and stipule put me back in seventh grade science class. The puzzle proved a useful meandering through related words as a leaf is a major player in one of my books. At my next revision, I’ll check for variety and intent of its synonymous words.  At the moment, mom wants to know what clue I’m reading, and we move on. Alzheimer’s doesn’t make her want to wait for me.

The puzzle entitled “Cut Me a Deal” provided a mini course in flash fiction. The answers included (I’m making it easy on you by separating the words, though the puzzle didn’t) Shuffle the deck, Shuffle off to Buffalo, Stacking the deck, and Deal me in. That’s a pretty generous prompt for writing flash fiction. The story is nearly there; all you need is a main character. So, Ronald Rucinski, you thought you were just a puzzle crafter, cribbed in your corner with naught but the computer light fending the darkness of the room. Now you’re also a high stakes player in a grimy casino off the main drag in Las Vegas, trying to bolster your flagging bank account with a poker faced attempt at betting the bank, working the room, and raking it in. “Deal me in,” Ronald Rucinski said, sliding his toothpick between the amber ivories in his mouth and narrowing his eyes as the dealer shuffled the deck. He hoped the slick bastard didn’t stack the deck like the last chiseler. As a story, it needs work, but all work needs more work. Still, it’s a start, and all stories must start someplace. “Cut Me a Deal” is even a decent working title.

Mom and I exhibit courage when doing puzzles. We write in pen. Pencils dull too fast and I have the courage of my convictions, though evidence suggests I’m often wrong. A writer must be courageous as she faces that blank page each day, grasping at flitting words and forcing them to her tome. Commit to the pen and you’re halfway there. OK, maybe a hundredth of the way there, a thousandth, but still, have pen, will write, and there you are, off on your book’s journey, wherever it may take you, down the occasional false path, but writing all the time. Writing quickly, as NaNoWriMo demands, because 50,000 words can be wrought from crossword books, but you still have to arrange them in a story order of some kind.

The more I’ve worked crosswords with my mom, the more I’ve learned about life. The more I learn about life, the better I write. It’s been an odd place to glean an education and a peculiar way of building a relationship with an ill person. Thank you, Mom, for all you’ve given me, 50,000 words and more. May God protect you and keep you as long as possible from the worst ravages of your disease.

 

 

Crossword puzzle image courtesy: Wikimedia.Commons

 

 

Alzheimer’s Pledge

I got you, Mom. If you fall, I will be there to catch you. You have Alzheimer’s disease, and you need someone on your side all the time. I promise to protect your physical presence in the world, even if you have no idea that’s what I’m doing, even if you get angry with me, even if you’re fed up with the whole damned thing. Which you are much of the time. Which I am much of the time.

I am your durable power of attorney for healthcare, your POA. It’s not a position I asked for but I’m happy to do this because you need someone. Every person who suffers from Alzheimer’s needs a POA because that person’s mental and physical health will never improve. It will decline forever until they die. During this term – long, short, agonizing, foreign – someone with the best interests of the ill person must make decisions about medical care. By this I mean all medical care and overall health care strategies: dental, vision, podiatry, bones, hearing, emergencies, daily pharmaceutical regimen, routine examinations, emotional well being, yearly vaccines, food and liquid needs, haircuts, X-rays when indicated, injuries – every aspect of body function. It’s a titan of a job, because caring for another human being is a titanic responsibility.

There’s no remuneration. It’s a freebie, like you were a freebie mom to me when I was little. Except of course, I got older and learned to do more and more on my own, and as all Alzheimer’s victims, you are less and less capable of doing anything, or learning anything new, or becoming more independent. You and Dad probably chose me because I’m the oldest and the one who lives closest. I’d like to think I also proved other noble and noteworthy qualities for the position, but likely, it was just the first two: oldest and nearest. Of course, you never thought you’d need me. You thought you’d both maintain your mental and physical capacities to care for yourselves without interference from anyone else. Still, thank heaven you chose someone, because who knew, right? Who knew you would one day need an advocate?

And this is where it has brought us. You struggling with the daily failures and disorientation that mark your illness, me wrangling with the daily tasks and quandaries of making your life easier, safer, as healthy as possible.

You don’t know that I’ve written a novel about a family trying to find a safe haven for their mother who has Alzheimer’s disease. It’s being edited while I write this, and I hope to submit to an agent I hope will love it and submit it to an editor. It’s a story that needs to be told because other people need to read about the difficulty of finding just the right place for their loved one to live. I started writing it about three years ago. You were long past the time when I could ask your opinion, consult on the accuracy of the plot, discuss the characters.

And I know the first thing you would have said to me, were you able. “You’re not writing about me, are you? Because my life is private and you have no right to tell anyone else about my troubles. It’s not their damned business.”

So here is my pledge as your oldest daughter and your POA, as the person who advocates in your best interest.

 

Dear Mom,

Nearly everyone already knows you have Alzheimer’s disease. Most people spot it the moment they see you, it’s that visible, like a tree floating rootless above the ground. You couldn’t miss it. And that’s the sum of what everyone knows, because you are right. Your life and health are not their damned business. I promise not to tell anything about your personal life.

Tales about “what my mama told me” are all fabrications, far from the truth and employed only as tropes. They are a way to describe situations that are far from the asymmetric orbit of your life. They are not about you.

The book I’ve written is not about you, our family, or the place where you live.

The articles in this series about Alzheimer’s on my blog, Ink Flare, are not about you, our family, or the place where you live.

You are hanging by the slimmest filament to life here on Earth, but I respect you, and all that you’ve always stood for: a sense of dignity, a right to privacy, a demand to keep your own secrets.

I will not betray you. I will not answer questions. I will not speak in asides. I will not reveal your quirks or problems. Your life still belongs to you, no matter how alien your current experience may feel.

That’s my promise to you, Mom. What I write and what I tell is not about you, and never will be.

Not because I’m your POA.

But because I’m your daughter, and I care, and I got you.

All my love,

Shari

 

 

Photo portrait of woman courtesy Max Pixel

 

 

 

 

Don’t Know Much about Alzheimer’s

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