Stigma

Contributed by Marianne Sciucco, author of Blue Hydrangeas

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 11 years to finish and publish that book, and a lot changed during those years. The US experienced an explosion of Alzheimer's cases, some five 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 that 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 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 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 and forgetting yourself and those you love is a subject best left in silence.

As an #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.