When Dementia (and its Stigma) Comes Home

Marianne Sciucco - January 22, 2018 12:11 PM

As a young, naïve, inexperienced nurse’s aide 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 had succumbed to it, 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 registered 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. I’d learned there was a stigma attached to these diseases, as though somehow it was better not to speak of them, not to share our stories. In this way, perhaps we could insulate ourselves from the horror of the reality, while at the same time we isolated ourselves from finding very real help and hope.

In 2002, I decided to fulfill a lifelong dream to write a novel, and chose Alzheimer’s as its subject.  Through my work as a rehabilitation case manager I met a lovely couple in their 80’s who inspired my characters, Jack and Sara. She was a beautiful woman who had Alzheimer’s, and her husband was devoted to her. They’d recently driven back to upstate New York from their winter home in Florida on their own, without any mishap. Until they arrived home. A fall and a broken pelvis brought them into the hospital, and my world.

It took eleven years to write and publish Blue Hydrangeas, an Alzheimer's love story, and during that time the US experienced an explosion of Alzheimer’s and dementia cases, some 5.4 million families affected. When I mention the disease today, I rarely do so to someone whose life hasn’t been touched by it in some way.

Still, a stigma remains.

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.

In 2015, dementia came home and hit hard. A family member whom I am responsible for as Health Care Proxy and Power of Attorney was diagnosed with mixed dementia: frontotemporal, vascular, and Alzheimer’s. Suddenly, I was thrust into the role of decision maker, the one to whom all others consulted regarding doctors, diagnostic workup, medications, and the long-range plan.

From the first doctor visit, we knew he was ready for a locked memory care unit. I researched and toured several facilities and found a safe place for him to live out the rest of his days. I applied for Medicaid on his behalf, stripping him of his assets and all he had worked for in the process, assigning them to his wife. If he understood what has happened to him, he would be more than angry. Perhaps he is angry, in his own silent way, as he refuses to acknowledge me, or anyone else, who visits, including his wife of 30 years. A man who once spoke incessantly and nonsensically is now uncommunicative, sleeping most of the day, trapped in his own world.

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 to me 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 to complete this journey. The frustration, confusion, and exhaustion are overwhelming. There are days of tears, sleepless nights, and feelings of hopelessness and inadequacy. Sometimes I 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 a 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 crisis 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. Caregivers and loved ones are still reluctant to reveal a loved one’s diagnosis, keeping shame and stigma alive.  Losing one’s mind, forgetting yourself and those you love, continues to be a subject best kept in silence.

I am now an active advocate for Alzheimer’s patients, their caregivers, and their families as a co-founder of AlzAuthors, the blog for authors writing about the dementias. I believe in opening dialogues, and sharing stories and solutions.

Much work must be done before we can speak of Alzheimer’s and dementia freely, without stigma, without shame.

Marianne Sciucco is not a nurse who writes but a writer who happens to be a nurse. A lover of words and books, she dreamed of becoming an author when she grew up but became a nurse to avoid poverty. She later brought her two passions together and writes about the intricate lives of people struggling with health and family issues. Her debut novel, Blue Hydrangeas, an Alzheimer’s love story, is a Kindle bestseller, IndieReader Approved, a BookWorks featured book, a Library Journal Self-e Selection, and a 5-star Readers Favorite. It’s available in Kindle, paperback, and audiobook on Amazon.
Marianne is one of the founders of the blog, AlzAuthors.com : Writing, sharing, inspiring, caring.

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