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.

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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.

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