AlzAuthors: Secrets, Stigma, Silence, Reticence

June is Alzheimer's and Brain Awareness Month. Once again I am teamed with AlzAuthors to help raise awareness of this disease. More than five million Americans are living with Alzheimer's and all of them have loved ones and caregivers also affected. It's the sixth leading cause of death in the United States. Every 66 seconds someone develops it. Yet as a society we have difficulty talking about it. Sometimes fear stops the conversation, Sometimes shame. Sometimes grief. AlzAuthors exists to start a conversation about the experiences of those living with dementia. To provide caregivers with knowledge, support, and an outlet to express their own stories. Here we each discuss how secrets, stigma, silence, and/or reticence have affected our own experiences.

Secrets, by Jean Lee

If you have not been a caregiver–if you’re not living with the disease, you may not understand the concept of secrets when dealing with Alzheimer’s. If I had been an observer I would have thought, why would anyone keep a diagnosis a secret?

But, I was not an observer. Alzheimer’s invaded and took over my parents’ lives as well as my own when they were both diagnosed on the same day. I was working full time as an elementary teacher, living in the same small town in which I’d grown up, when I assumed the primary caregiving, decision-making role with my 86-year-old parents. They were small business owners, my father still drove, and they lived independently in their own home.

On the day of their diagnosis my dad struggled to his feet shouting, “How dare you use the A. word with me.” as Mom wagged her finger at the doctor scolding, “Shame on you.”

We came home from that appointment and conversation about the diagnosis stopped, unless I brought it up. They denied, saying they didn’t want anyone to know, to think they were crazy, or start gossip.

To respect the parents who had given me everything, I propped them up, protected them and their dignity, while I felt immense guilt whittling everything away piece by piece: their independence, their driving, forcing my dad to retire, moving them eventually to a locked memory unit.

I did not write, Alzheimer’s Daughter, to come clean, be honest, or tell secrets. Through the journey Isought support by reading about personal experiences. Each time I found a similar situation, I thought, If this person survived, so will I. Keep breathing. One week after my mother’s death, when I realized my father had no memory of her or their 66-year marriage, my secrets could no longer be contained, so I wrote the book I needed to read all along. Reviewers say it is written with wincing honesty about the cruel affects of the disease, but a WWII love story held together by faith and family is contained within the pages.

I see a new openness about the disease, especially in those touched by early onset, through books like Greg O’Brien’s On Pluto, B.Smith and Dad Gasby’s Before I Forget as well as Kimberly Williams Paisley’s Where the Light Gets In. When each of us tell our stories and combine our voices, we form a large pool of collaborators offering resources, support, understanding, and empathy.

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Stigma, by Marianne Sciucco

As a young, naïve, inexperienced nurse in 1990, I accepted a job in a long-term care facility and took

on the task of caring for dozens of patients with Alzheimer’s and dementia. The disease was not new to me. A beloved aunt succumbed to Alzheimer’s, and I experienced the pain of her forgetting me, a niece she loved, and witnessed her decline. However, that personal experience did little to prepare me for the hard work and dedication required to care for the helpless and often forgotten individuals with dementia.

My experience with Alzheimer’s patients and their families continued over the next 17 years, throughout my career as a hospital nurse and case manager. Many times, I encountered families in crisis, when serious decisions had to be made by members often unschooled in the disease and lacking adequate knowledge of available resources.

Outside of my work, few people discussed Alzheimer’s or dementia, and it felt like I spent my days in some sort of warped reality.

As a child, I dreamed I’d someday write a book, and in 2002, I settled down to do so. But I couldn’t come up with a story or characters that inspired me to complete a project. Not until a lovely couple in their 80’s crossed my path one day at work. She was a beautiful woman who had Alzheimer’s. Her husband, though quite frail, was devoted to her. They inspired the characters of Jack and Sara in my novel Blue Hydrangeas, an Alzheimer’s love story.

It took eleven years to finish and publish that book and a lot changed during those years. The US experienced an explosion of Alzheimer’s cases, some 5 million-plus families now affected. When I mention it today, I rarely do so to someone with no familiarity. For example, at a recent writer’s conference, I sat at a table with three other writers, two of them strangers, and all of us revealed we had a loved one with the disease. Scary, isn’t it?

I wrote my novel from the perspective of a health care professional with hundreds of patient interactions behind me. My personal experience grew to three aunts, none of whom I was intimately involved in caring for, nor was I a decision maker in their care.

Flash forward 26 years – a loved one whom I am very close to and responsible for as Health Care Proxy and Power of Attorney was recently diagnosed with mixed dementia: frontotemporal vs. vascular vs. Alzheimer’s.

Suddenly I am thrust into the role of caregiver, the decision maker, the one to whom all others consult regarding doctors, diagnosis, hospitalization, and discharge plans. Caregiver collapse forced him into the hospital. He does not understand why he is there. “I’m not sick,” he says. “I want to go home.” I applied for Medicaid on his behalf. I researched and toured several nursing facilities. He knows nothing about any of this.

I wrote a book about Alzheimer’s and I thought I knew what I was writing about. Many people

affirmed I did. Readers, caregivers, wrote reviews and said I got the story “right,” and the novel is “spot on!” Yet what I knew was just a fraction of what I need to know now to complete this journey. I am tasked with stripping this person of everything he acquired in his life, of finding him a safe place where he will be cared for the rest of his days. The frustration, confusion, and exhaustion are overwhelming. There are days of tears, sleepless nights, and feelings of hopelessness and inadequacy. Sometimes I just want to run away. I want to get back to my “real” life. But once dementia hits, there’s no going back. We can only push on, praying we make the right choices, the proper decisions. It’s a long trip without a road map.

A lot has changed since that wide-eyed young nurse walked into that nursing home and encountered Alzheimer’s care for the first time. As millions of baby boomers enter their retirement years, dementia is at the forefront of a national discussion on healthcare, aging, and resources. Most people are familiar with these diseases, but misconceptions and inaccuracies about signs and symptoms, treatment, research, and its future remain. Shame and stigma still surround it. Caregivers and loved ones are often reluctant to reveal a diagnosis, keeping it secret. Losing one’s mind, forgetting yourself and those you love, is a subject best left in silence.

As a #AlzAuthor, I am an active advocate for Alzheimer’s patients, their caregivers, and their families. I believe in opening dialogues, and sharing stories and solutions. In spite of this, I am not willing to reveal the name of my loved one in public. This is another way to protect him, to preserve his privacy and dignity. I may be responsible for him, but I don’t believe I have the right to disclose his “secret,” a secret he does not understand. I am here to help, not hurt. Invading his privacy at this stage helps no one, and may hurt him.

Much work must be done before we can speak of Alzheimer’s and dementia freely, without stigma, without secrets. Silence and shame, even for good reasons, cannot be acceptable.

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Silence is Not Golden When it Comes to Alzheimer’s, by Shannon Weirsbitzky

Silence is golden. We’ve all heard that phrase. In the midst of a world that is loud and hard to

understand at times, we often crave silence. Whether at home or at the beach with only the sound of the waves as company. Perhaps at a spa or in the woods, walking along a tree-lined path.

There are times though when silence isn’t golden. This is particularly true with Alzheimer’s. Too often, as it steals memories, it also steals voices. There is a certain stigma with the disease. As if there is shame in forgetting, or being forgotten.

Poet and teacher Clint Smith said something in a TED talk that resonated with me in a profound way. “We spend so much time listening to things people are saying that we rarely pay attention to the things they don’t.” I wrote it down. I replayed his words. I read them out loud to myself. Each time, I could hear the message thrum in my heart.

When he spoke, Mr. Smith was referencing ignorance and injustice, but for me, the statement is equally applicable for Alzheimer’s. It is a disease that is spoken about in hushed tones if it is spoken about at all. I’ve heard too many stories of families who told no one about a diagnosis.

When I wrote WHAT FLOWERS REMEMBER, I was shocked to learn that it was one of only a

handful of novels for children ages nine to thirteen that dealt with Alzheimer’s. Even more surprising were the conversations I began having with friends. It was as if a secret password had been spoken. I’ve been forgotten too. And that was all we needed to kick start the dialogue.

People I’d known for years suddenly spoke up, sharing their experiences with the disease. We traded stories, and fears, funny moments and terrible endings. But why hadn’t we talked about it earlier? When we might have helped each other cope?

I’m not sure.

I lost my Grandfather when I was in my early thirties. And he lost me. I’ve written about it before. And I keep writing about. Why? Because it is impossible to understand how someone you love, who loves you so much in return, can forget you.

Reading helps. Talking helps. Community helps.

Through all of those things we begin to heal. We laugh and cry, realizing that we aren’t the only one who has experienced the pain. Our conversations put an end to the isolation and stigma that Alzheimer’s can bring.

So let this be the month we begin to share. Let’s start creating that new language. Together, our voices can stamp out the stigma of Alzheimer’s. Shout it from the rooftops. Sing from the rafters. Talk with those you know. Someone will thank you for it. And you may find yourself healing too.

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Reticence, by Vicki Tapia

An unexplained inner drive compelled me to document a multi-year sojourn that I took with my

parents. It was the last journey we took together…a journey down the rabbit hole of dementia. Within months of each other, Dad received a diagnosis of Parkinson’s-related dementia and shortly thereafter, Mom, with Alzheimer’s disease. During the first year, I began a diary to record our odyssey. Journaling every evening helped me unwind and release some of the turbulent emotions involved with the day-to-day challenges we faced. This journal became my confidante to whom I could “say” anything without fear of reprisal and it asked for nothing in return. It simply listened.

As time passed, an idea quietly germinated in my subconscious, leading to a growing awareness that my experience might be helpful to others walking the same road. With that realization, my diary morphed into a manuscript and I began to consider pursuing publication. With a bit of wariness, I shared the manuscript with a few close friends, who offered positive feedback and encouragement. Then something unexpected happened. I developed a severe case of reticence. How could I expose our family to the public’s scrutiny, unveiling all the foibles and missteps? How could I expose the frightful truth about Mom’s precipitous decline? Even worse, if I moved forward with publication, I risked alienating my only sibling and perhaps his family, in my honesty about his lack of involvement and emotional support. When my best friend from childhood intimated that I would be “dishonoring” my parents if I were audacious enough to seek publication, her comment completely knocked the wind out of my sails. That did it. I chastised myself for even considering unmasking our family in such a callous way. The story was simply too private and I certainly did not want to dishonor my parents’ memory in any way, shape or form.

The manuscript languished on my computer hard drive for nearly 3 years. A tiny inner voice,

however, refused to leave me alone. Now and then, it spoke to me, in various iterations: This narrative might be able to offer hope to others! Or: You know you learned a lot of lessons along the way that might help others from making the same mistakes. Why won’t you share them? Or: This story has so many ideas for coping, plus you could add information from experts to make it even more useful. Or: What if you lightened another’s load, letting them know that they’re not alone on a difficult road?

Eventually, I could no longer deny that voice, so I listened. I moved forward with editing, found a publisher and shared my story. Nine long years after I began my diary to cope, my diary of hope, Somebody Stole My Iron: A Family Memoir of Dementia was born.

Let’s not keep secrets any longer. Join us during June, Alzheimer’s and Brain Awareness Month. Speak out.