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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Dearest Alice . My heart breaks for you. I hold you both up to God’s light and support you with my love and admiration for your amazing talent.
Dearest Linda. Thank you for your compassion. That certainly means a lot to me. Jonathan is actually fine at this stage. Engaged in lots of cognitively powerful activities. He writes original memoir pieces that are very good and says this is the result of sitting in on so many of my writing workshops over the past forty-five years. He now finds more joy in writing than the drawing and music that were his usual creative pursuits in the past. This is good because portraying characters and composing scenes require a deep level of focus and detail concentration which is very beneficial for him. He also loves jigsaw puzzling – the 1500-piece variety. Again much concentration is required plus he has fond memory associations of doing puzzles with his mom when he was a boy. He also reads a lot – challenging books as well as his favorite New York Times articles. He has also begun gardening at our church which has a large planted space in sore need of attention. Medically he is taking a basic drug that has disappeared his brain fog. Dementia is not like the tv commercials portray it to be. Their purpose is to ramp up fear and sell proposterously expensive and dangerous drugs. There is a long and gradual period before extreme changes begin and the aggressiveness they emphasize can often be mitigated with simple mood medications that are harmless and affordable. Meanwhile there is a real-life story to be told here of real-life experience. I hope you will continue to read it and pass it on to others. Dementia is a reality in all of our lives and futures in one way or another. Truth is our best armor against being cast into despair by the prospect. I hope to add a little to that reassuring truth. Dementia is one of the many ways all of us will evolve from this life into whatever may lay beyond. Passing on is our universal destiny. Some of those passages involve discomfort and unpleasantness. We can perhaps be a bit better prepared if we understand realistically what to expect. That is what our story – Jonathan’s and mine – is meant to do. Help others – in an honest and caring fashion – to be prepared. Love and Blessings. Alice
Alice,
So very sorry that you and Jonathan are going through all of this. Sending you hugs and hoping that the care you both need is available to you.
Monica
Thank you Monica for your compassion. That certainly means a lot to me.
Jonathan is actually fine at this stage. Engaged in lots of cognitively powerful activities. He writes original memoir pieces that are very good and says this is the result of sitting in on so many of my writing workshops over the past forty-five years. He now finds more joy in writing than the drawing and music that were his usual creative pursuits in the past. This is good because portraying characters and composing scenes require a deep level of focus and detail concentration which is very beneficial for him. He also loves jigsaw puzzling – the 1500-piece variety. Again much concentration is required plus he has fond memory associations of doing puzzles with his mom when he was a boy. He also reads a lot – challenging books as well as his favorite New York Times articles. He has also begun gardening at our church which has a large planted space in sore need of attention. Medically he is taking a basic drug that has disappeared his brain fog.
Dementia is not like the tv commercials portray it to be. Their purpose is to ramp up fear and sell very expensive, very dangerous drugs. There is a long and gradual period before extreme changes begin and the aggressiveness these ads emphasize can often be mitigated with simple mood medications that are harmless and affordable.
Meanwhile there is a real-life story to be told here of real-life experience. I hope you will continue to read it and pass it on to others. Dementia is a reality in all of our lives and futures in one way or another. Truth is our best armor against being cast into despair by the prospect. I hope to add a little to that reassuring truth. Dementia is one of the many ways all of us will evolve from this life into whatever may lay beyond. Passing on is our universal destiny. Some of those passages involve discomfort and unpleasantness. We can perhaps be a bit better prepared if we understand realistically what to expect.
That is what our story – Jonathan’s and mine – is meant to do. Help others – in an honest and caring fashion – to be prepared. Love and Blessings. Alice
Oh, Alice. You write so beautifully and honestly about this heartbreak. I hope there is more to come – love you lots.
My dearest Mary. You are my precious friend and have been for a very long time. I well remember how you and Rick were my go-to saviors so many times during my last challenging months on Vashon Island. I was alone there, but you made me feel I had caring hearts to turn to when I needed them. I will never forget your kindness. Thank you for praising my writing. That means a lot to me because you are one of the best editors I have every known. In fact you are the person who taught me to write short pieces when I thought my writing style was only suited to book-length stories. What I attempt to do in this blog and all the rest began with your tutelage. I am forever grateful for that also. So you see how much I owe you dear Mary. I am forever in your debt. We are forever sisters of the heart. And you know me. I plan for there to be many more chapters of my caregiver story to come. Feel free to pass them on if you are so inclined. Love and Prayers and Blessings to You Always. Alice
Alice, I’m very sorry to hear this. My brilliant mother had dementia, as did her brilliant father before her. The warning sign with Mom was not calling things by their exact names. Other than that, no other warnings until she was at the stage of repeating questions and forgetting the answers. She was cute. Aricept and Namenda did provide some stabilizing, but honestly I don’t know of any med that staves off the unhappy end. Also there is the issue that some people can’t be cared for at home because they are or become obstreperous. Mom didn’t; she became a sweet five-year-old. But an in-law turned accusing and miserable and was safer in a nursing home. There’s a huge range in the behavior of someone with dementia and do not be afraid or ashamed of having to seek relief from the burden of being the caregiver.
My best wishes.
Irene
I have friends in this same predicament. And after 50 years of marriage myself, I can attest to things not looking the same on the outside as they are on the inside. Sending you cyber hugs.
Dear Irene. You speak from a place of clear, forthright vision. I have always appreciated that in you and depended upon it for wise direction many times. Your description of your mother is beautifully heartfelt. I am glad you had such a benign experience of her dementia. I am also well aware of experiences like that of your in-law. They are heartbreaking for sure. My concern is that most of what we hear are stories from the later, more severe stages of this disease. There is another story to tell. Of the early times and their particulars. That is the story I will attempt to relate because I believe some balance is needed.
Jonathan is actually fine at this stage. Engaged in lots of cognitively powerful activities. He writes original memoir pieces that are very good and says this is the result of sitting in on so many of my writing workshops over the past forty-five years. He now finds more joy in writing than the drawing and music that were his usual creative pursuits in the past. This is good because, as you well know, portraying characters and composing scenes require a deep level of focus and detail concentration. This is very beneficial for him. He also loves jigsaw puzzling – the 1500-piece variety. Again much concentration is required plus he has fond memory associations of doing puzzles with his mom when he was a boy. He also reads a lot – challenging books as well as his favorite New York Times articles. He does regular physical exercise and has also begun gardening at our church which has a large planted space in sore need of attention. Medically he is taking Aricept and that has disappeared his brain fog for the timebeing.
I have no doubt you have noted that dementia is not like the tv commercials portray it to be. Their purpose is to ramp up fear and sell very expensive, very dangerous drugs. There is a long and gradual period before extreme changes begin and the aggressiveness these ads emphasize can often be mitigated with simple mood medications that are harmless and affordable.
Meanwhile there is a real-life story to be told here of real-life experience – not just over the long run but one episode at a time. I hope you will continue to read my personal version of that story and pass it on to others. Dementia, as you have unfortunately had to discover, is a reality in all of our lives and futures in one way or another. Truth is our best armor against being cast into despair by the prospect. I hope to add a little to that truth. Dementia is one of the many ways all of us will evolve from this life into whatever may lay beyond. Passing on is our universal destiny. Some of those passages involve discomfort and unpleasantness. We can perhaps be a bit better prepared if we understand realistically what to expect.
That is what our story – Jonathan’s and mine – is meant to do. Help others – in an honest and caring fashion – to be prepared. Love and Blessings. Alice