No Secrets Please – Our Dementia Story

Dementia Story, , , , ,

No Secrets Please – Our Dementia Story. My mother was mentally ill. Her dis-ease displayed itself in many ways. Rage and violence at one end of her emotional spectrum. Fear and brooding at the other. Everyone could see her tortured extremes. No one said a word about them.

I Remember our Family Doctor Visiting my Father. Doctor Benny was a man who could be harsh in his pronouncements, but that day he was a gentle mentor. He told my father that my mother needed help and what kind of help that should be. My father flew into one of his own rages and sent Doctor Benny away.

The Family Secret was Saved but My Mother was not. She remained imprisoned in the fearful darkness of her affliction. She remained shut away from possible relief as surely as if she were locked up in a backroom and the key had been thrown away. We remained imprisoned with her – all afflicted by secrets and silence – all denying the truth in front of our eyes..

Openness would have Released Us from Our Prison. Openness would have allowed light into our mutually occupied backroom. Instead, we suffered in the dark, our mouths sealed by shame, our hearts clutched by fear. Secrets held us captive – my mother most mercilessly of all. What a gift it would have been if someone had spoken the truth.

Jonathan and I have Chosen an Open Road. We make no secret of his dementia. Our families know. Our friends know. We know. You know. There are no secrets here. No locked rooms. No silence. No shame or embarrassment or even sheepishness. We have freed ourselves from all of that. Jonathan most fully of all. No Secrets Please – Our Dementia Story.

Not Everyone is Comfortable with Our Openness. When the subject of dementia arises, some people quickly change the subject. They are discomforted. Sometimes they fawn over Jonathan as if he were a wounded bird. Sometimes they turn away. Sometimes they disappear altogether.

Those who Turn Away are Themselves Afflicted. They are afflicted by fear. They are afflicted by the images broadcast on television. Images designed to create a panic and sell outrageously expensive pharmaceuticals. Those who turn away are more comfortable with the secret. We are more comfortable in the light.

I Remember that My Mother Almost Never Smiled. I never saw the smile in the above photo in real life – not that I can recall. I think about how alone and lonely the mother I did see must have been. I remember how alone and lonely we all were. We were isolated in the darkness – the dark backroom closet of our silence and our shame.

The Only Antidote for Darkness is the Light. In light we experience the dawn. In light a smile breaks through our fears. In light shines the love that frees us all. In the light my mother might have embraced the dawn – regained her smile – been at least a bit more free. No Secrets Please – Our Dementia Story.

LESSON LEARNED – LET THERE BE LIGHT.

You possess storytelling magic. Keep on writing whatever may occur. AliceOrr  https://www.aliceorrbooks.com

Alice Orr is a number of things. Teacher. Storyteller. Former Editor and Literary Agent. Author of 15 novels, 2 novellas, a memoir, and No More Rejections: 50 Secrets to Writing a Manuscript that Sells. She also blogs for writers and readers at https://www.aliceorrbooks.com.

Alice’s Memoir is titled Lifted to the Light: A Story of Struggle and Kindness. At the beating heart of this moving story a woman fights her own disease disaster. All her life she has taken care of herself. Now she faces an adversary too formidable to battle alone. An inspiring read available HERE.

Praise for Lifted to the Light: A Story of Struggle and Kindness: “I was lifted. I highly recommend this book as a can’t-put-down roadmap for anyone.” “Outstanding read. Very, very well written. Alice Orr is an amazing author.” “Honest, funny, and consoling.” “Ms. Orr is a fine, sensitive author and woman. I have read other books by her and am glad I haven’t missed this one.” “Couldn’t put it down.”

All of Alice’s Books are available HERE .

Ask Alice Your Crucial Questions. What are you most eager to know? About Alice and Jonathan’s experience? About telling your own stories? Ask your questions in the Comments section at the end of this post. Or email Alice at aliceorrbooks@gmail.com. She would love to hear from you.

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Speaking Falsehoods to Power – Our Dementia Story

Dementia Story, ,

Speaking Falsehoods to Power – Our Dementia Story. My husband is a charming man. I had no intention of remarrying before I met him. Tried it. Was miserable. My late Grandma’s wisdom spoke to me as it has so often. “Not for you” she said. Then there was Jonathan. The rest is a fifty-three-year story that began with his blue-eyed smile in 1972.

Grandma and Alice at Two and a Half

Nobody Wants a Dementia Diagnosis. Any of us would most likely use just about any means necessary to avoid hearing those words or reading those test results or facing those prospects. Jonathan’s means of avoidance was his charm.

My Wife Says I Forget Things. Do you know a single wife who does not contend that her husband forgets things? “My wife says I forget things.” That is what Jonathan told his young doctor. Then he smiled. Then they shared a chuckle.

We Needed a Referral for Testing. Jonathan’s charm target was our gateway to a world class neurology staff a half-dozen blocks from our home. We already had strong connections there. Jon would be treated as an individual instead of a case file there.

Early Detection was Crucial. The faster the professionals identify a disease the better it is for the patient. This is definitely true of dementia. Brain scan. Blood tests. Whatever they have in their diagnostic kitbag as ASAP as possible. Too bad Jon’s lifelong characteristic deployment of the dimples did his trick. His doc deemed no follow-up necessary. So much for ASAP at our nearby facility.

Finding a New Facility was Crucial. We live across the East River from Manhattan. I would have to search there. Lots of world class places. Huge. Formidable. Complex places. I was duly intimidated but waded in anyway. Across the river and into the medical bureaucracy.

Getting their Attention was Crucial. I faced a wall that seemed impregnable to me. A cheek-by-jowl array of massive structures and impersonal systems. These were the adversaries I was about to confront. I stared at that wall and felt myself shrink in significance by the second. Would they even notice me – much less hear my story?

Frustration Maximized my Motivation. It took hard-fought months to get into one of those massive facilities. On appointment day a waiting line overflowed the reception area into the lobby. It took nerve racking hours to get a brain scan scheduled. Too bad they could not fit us in for several weeks more. We needed a reroute back to the human dimensions of our neighborhood.

Sling Shot Time. I was no match for the powerful arm of the big city medical establishment. I could feel the fist at the end of that arm clenched above me. I could foresee that fist pounding my insignificant self and our predicament to bits. David had a sling and some pebbles to wield against Goliath. I had my will and some wiliness.

I Began to Obfuscate. I cannot say I lied. Grandma is up there listening. She would return from her resting place and rebuke me for a lie. Obfuscate is a safer term for what I did from then on with almost every gatekeeper I encountered. Never in person. They could not see my trembling limbs and terrified eyes as I was Speaking Falsehoods to Power – Our Dementia Story.

I Obfuscated Creatively. First I only faked a doctor referral – or maybe two. Next I pretended to be a doctor’s assistant. Altered my voice to sound medical. I guessed my ruses might be most effective at the end of the day when folks were tired. I did what I believed I had to do and it worked. Jonathan’s brain scan happened ASAP and where we needed it to happen. A half-dozen blocks from home.

I Never Got Over Being Terrified of Goliath. I was certain the powers that be would discover what I was doing. I told myself my motives were right and righteous. My beloved husband needed help as fast as we could get it. Nothing must stop that. Not my own trepidation. Certainly not the possibility of sanctions by my bureaucratic betters.

Jon’s Brain Scan Diagnosed Dementia. Treatment began and has proceeded positively so far. We focus on the hopefulness of that and on how much we love each other. Grandma is with us. She kisses the top of my head like she did when I was a little girl. She understands why – when necessary – her bigger girl will be Speaking Falsehoods to Power – Our Dementia Story.

LESSON LEARNED – GET YOUR LOVED ONES WHAT THEY NEED AND DESERVE. Remember David. Find yourself a sling. Drop your determination into it. Steady your knocking knees. Take your shot.

**********

You possess storytelling magic. Keep on writing whatever may occur. AliceOrr  https://www.aliceorrbooks.com

Alice Orr is a number of things. Teacher. Storyteller. Former Editor and Literary Agent. Author of 15 novels, 2 novellas, a memoir, and No More Rejections: 50 Secrets to Writing a Manuscript that Sells. She also blogs for writers and readers at https://www.aliceorrbooks.com.

Alice’s Memoir is titled Lifted to the Light: A Story of Struggle and Kindness. At the beating heart of this moving story a woman fights her own disease disaster. All her life she has taken care of herself. Now she faces an adversary too formidable to battle alone. An inspiring read available HERE.

Praise for Lifted to the Light: A Story of Struggle and Kindness: “I was lifted. I highly recommend this book as a can’t-put-down roadmap for anyone.” “Outstanding read. Very, very well written. Alice Orr is an amazing author.” “Honest, funny, and consoling.” “Ms. Orr is a fine, sensitive author and woman. I have read other books by her and am glad I haven’t missed this one.” “Couldn’t put it down.”

All of Alice’s Books are available HERE .

Ask Alice Your Crucial Questions. What are you most eager to know? About Alice and Jonathan’s experience? About telling your own stories? Ask your questions in the Comments section at the end of this post. Or email Alice at aliceorrbooks@gmail.com. She would love to hear from you.

http://facebook.com/aliceorrwriter/
http://twitter.com/AliceOrrBooks/
http://goodreads.com/aliceorr/
http://pinterest.com/aliceorrwriter/

 

 

 

Oh No I’m a Caregiver – Our Dementia Story Begins

Dementia Story, ,

Oh No I’m a Caregiver – Our Dementia Story Begins. I have long written and taught and talked about how others can discover the best stories they have to tell. Stories from the center of their beating hearts. Now I have such a story myself. This is a cautionary tale. I will tell it here.

I Cannot Recall the Moment of my First Inkling that Something Terrible was Happening. I know it was long before the day my husband Jonathan walked blithely out the door to what should have been a pivotal medical appointment. I also now know I should have questioned his insistence on going alone. I should have been more cautious. I should have gone with him.

 I had Felt the Terrible Thing Looming for as Long as a Year Before that Day. A quirk in the corner of my awareness. Something off. A ping of the antenna that usually urges me to pay attention to details. Unfortunately my entirely full attention would not become engaged until later – when the quirk in the corner turned into an alert and the alert status intensified toward bright red.

 I Cannot Tell You What Exactly to Look as the Onset of Dementia. A small signal. Then another. Then another. My signals emerged from the experience of fifty-plus years with my husband. Our life together had not been an easy passage. I have never broadcast that before. I have portrayed us – Jonathan and me and our marriage – as very easy indeed.

“Couple Number One.” Somebody declared us that once as we swept into some social event or other. Dolled up and delightful as was our habit in those days. Scripted to present precisely the intended image. An old friend recently told me this. “The two of you embody the kind of relationship that I would have liked to have.” Neither description actually applies.

The Intention of This Story is to be Authentic. What use is it to you otherwise? Our story is about a real dilemma confronting real human beings with real human problems. Most dementia stories reveal the details of the disease but not the details of the flawed lives the disease most often interrupts. Our lives and our story are as flawed as we are ourselves.

Back to My First inklings. Moments of confusion I brushed aside. Contemporary life can be confusing to anyone after all. Sometimes I find it difficult to discern what is up from what is down myself. Jonathan’s memory lapses caught my notice first. Their increasing occurrence set my alarm pinging too insistently to ignore. Oh No I’m a Caregiver – Our Dementia Story Begins

“Let’s Find Out about This.” I repeated that plea several times. The response was always the same. A sneer. A scoff. A burst of outrage. I backed off then. I had veered too close to Jonathan’s anxiety triggers before and was not about to risk the result again. Not yet anyway.

 I Have My Own Temper – Fierce and Angry – then Gone. Jonathan’s temper is different. Usually repressed. More rage than anger when let loose. Building from the floor of him in a rush to explosion force with shrapnel flying everywhere. Better not to be in that blast zone. Best not to trigger an explosion in the first place.

 But I Had to Do Something. His annual primary care physician checkup was pending. I made my plea more specific. “Talk about your memory problems. Get a referral to a neurologist.” Jon agreed. I should have remembered he does that when he wants to shut me up.

 I Wish I could Recall the Details of Jon’s Return from his Doctor Visit. Where I stood. The quality of light in our apartment that afternoon. A vivid image to record in my journal. A picture peg on which to hang the statement that signaled the first battle of the war to come. The battle I would have to wage.

“I Told Her My Wife Thinks I Forget Things.” Jonathan smirked as he said that to me. I imagined his cute smile as he said it to her. Jon can be a charmer when it suits his purpose. His young physician did not take me seriously. That closed the door to further testing at our conveniently local medical facility. And plunged me into a chasm of conflict with the medical system. Oh No I’m a Caregiver – Our Dementia Story Begins.

LESSONS LEARNED – FEEL FREE TO BENEFIT FROM THEM YOURSELF

Never Underestimate the Power of Denial – Nobody wants dementia. Not for yourself. Not for someone you love. It is a truth you do not wish to admit. Now or ever. Not to anyone. Do not tell yourself the warning signs are nothing to worry about.

Never Underestimate the Power of Self-Deception. You may truly be blind to dementia’s presence and believe your blindness to be light. Do not overlook the warning signs. Do not tell yourself they are something other than what they could actually be.

Never Underestimate the Absolutely Crucial Advantage of Early Detection. This is the real reason to see and recognize and admit the possibility of Dementia where you wish/hope/pray it is not. The quality of your future life depends on it. Do not lose the advantage of early diagnosis and treatment.

**********

You possess storytelling magic. Keep on writing whatever may occur. AliceOrr  https://www.aliceorrbooks.com

Alice Orr is a number of things. Teacher. Storyteller. Former Editor and Literary Agent. Author of 15 novels, 2 novellas, a memoir, and No More Rejections: 50 Secrets to Writing a Manuscript that Sells. She also blogs for writers and readers at https://www.aliceorrbooks.com.

Alice’s Memoir is titled Lifted to the Light: A Story of Struggle and Kindness. At the beating heart of this moving story a woman fights her own disease disaster. All her life she has taken care of herself. Now she faces an adversary too formidable to battle alone. An inspiring read available HERE.

Praise for Lifted to the Light: A Story of Struggle and Kindness: “I was lifted. I highly recommend this book as a can’t-put-down roadmap for anyone.” “Outstanding read. Very, very well written. Alice Orr is an amazing author.” “Honest, funny, and consoling.” “Ms. Orr is a fine, sensitive author and woman. I have read other books by her and am glad I haven’t missed this one.” “Couldn’t put it down.”

All of Alice’s Books are available HERE .

Ask Alice Your Crucial Storytelling Questions. What are you most eager to know about how to discover the strongest stories you have in you? Ask your questions in the Comments section at the end of this post. Alice will answer.

 http://facebook.com/aliceorrwriter/
http://twitter.com/AliceOrrBooks/
http://goodreads.com/aliceorr/
http://pinterest.com/aliceorrwriter/