Guest Author: Gincy Heins

Before the Diagnosis: Stories of Life and Love Before Dementia

By Gincy Heins

On the surface, Before the Diagnosis: Stories of Life and Love Before Dementia is an anthology of 36 essays about people before they had dementia but it is so much more. Each story was written by a family member and tells about the person before their diagnosis. A person who people have forgotten about and many do not see when they look at that person today.

In His Prime

My husband was diagnosed with mild cognitive impairment when he was in his prime, at 55-years-old. Medical personnel did not look at him as the brilliant person he still was, but rather as a person in the room who could not hold up his end of a conversation.

Most doctors did not try to find out anything about him personally, and instead looked at him as his diagnosis. To be honest, there were a few doctors who were wonderful at interacting with my husband, asking him about the work he had done before his forced retirement due to MCI, or talking to him about his current activities.

Those people are still part of what I consider our team.

Support Group Perspectives

My husband and I attended a support group where there was a separate group for each of us. I would listen as people would talk about their spouse with some form of dementia. Like my husband, they had vibrant, amazing lives!

There was an opera-loving doctor, a TV producer, a JAG officer, a petite black belt who was always impeccably dressed, an attorney who was ahead of his time in the world of private party adoptions, and so many more impressive individuals.

Each person had an amazing history they could no longer share. I realized they probably had the same problem in life that my husband had, with a diagnosis that made them virtually invisible.

Becoming Visible

I believe people should be known for who they are and what they’ve accomplished and not just their dementia diagnosis. So, I came up with the idea of creating a book of stories about people and what they were like prior to their diagnosis.

Yes, every person is an amazing and unique individual, but most of us can tell our own story when we meet people. We can tell them what we do and what interests us. We can let people know that we are “somebody.”

But when someone has any type of dementia, they can’t do that.

Others look at them as they are today, and that is not an accurate representation of who they are and what they’ve accomplished so far in life. For example, my husband used to be very gregarious. While he has not declined much and still talks, it’s nothing like in the past.

Before, he would talk to anyone at length about his job, which he loved, or just about anything else. Now I work to draw him out and include him in conversations with others and try to encourage him to participate by asking him questions which he answers with just a few words.

Stories to Tell

After thinking about all the stories that existed, I spread the word on social media, by word of mouth, and through local Alzheimer’s organizations. I told them I was looking for people to share a story about their loved one before their diagnosis.

I crossed my fingers and hoped a dozen people would be interested in participating. I was shocked and thrilled to end up with three times that number!

The majority of the 36 authors had no professional writing experience. Many were nervous about it, but everyone who responded did so excitedly. Although I edited the essays with the help of a friend, we worked hard to keep the essays in the voice of the author.

They are all in different styles. For example:

• One man interspersed his essay with his wife’s poetry
• Another woman broke up her essay with titles of Frank Sinatra songs
• Some essays are short, a few are rather long, but most fall in the middle
• Some people submitted their loved one’s eulogy but most started with a blank piece of paper

Everyone had the final say in their essay before it was published.

Love and Labor

You can describe Before the Diagnosis: Stories of Life and Love Before Dementia as both a love story and a labor of love. You can also describe it as a love letter to the subjects of the essays because each essay was written by a relative who has known and loved the person since before the diagnosis.

The book is divided into four parts:

1. Mothers and Fathers
2. Husbands and Wives
3. Extended Family
4. Family Relationships

Essays in the Extended Family section are about a son, a daughter, grandparents, and an aunt. Some families had more than one person who wanted to write an essay about the same person. Those essays are in the Family Relationships section with one person being written about by the wife and son, another by the wife, son, and granddaughter, and both my brother-in-law and me writing about my husband. With essays written from different perspectives, and sometimes different generations, they show different sides of the individuals.

After the title of each essay is the author’s name. Following that is a short introduction, anywhere from a sentence to a paragraph, introducing us to their loved one. At the end of the essay, the author introduced themselves.

In addition to the Table of Contents, the book has an Index by Author to make it easier for people to find a particular essay or author.

The Who and Why

I’ve been asked many times who I thought would – or should – read the book. Obviously, family members and family friends are likely to be interested in it. I also think medical students and medical staff would benefit from this book. It is a nice reminder to people that there is more to their patient than their diagnosis, and this applies whether the diagnosis is a type of dementia, cancer, Parkinson’s or something else.

“I actually think this book should be assigned reading for all medical students, especially those going into neurology.”

Good Stories Doing Good

There’s one more thing that makes this book unique. Over 94% of the revenue from the sales of the book are donated to four different Alzheimer’s related organizations with neither myself nor the publisher receiving any payment for the book. The benefitting organizations are:

• Alzheimer’s Orange County
• Lewy Body Dementia Association
• Alzheimer’s Association
• Alzheimer’s Research and Prevention Foundation

Be Part of Next Project

I am currently taking names of people who are interested in writing a story about their loved one to be included in Before the Diagnosis: Stories of Life and Love, Volume 2. Before the Diagnosis: Stories of Life and Love Before Dementia is available on Amazon.com in print and e-book formats.

Thank you.

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Gincy Heins

Gincy Heins is the creator and editor of Before the Diagnosis: Stories of Life and Love Before Dementia and one of the co-authors of the 365 Caregiving Tips series of books.

She is also a teacher, speaker, city commissioner, and volunteer. Gincy is also a caregiver and advocate for her husband who was diagnosed with mild cognitive impairment when he was 55-years-old.

Connect with Gincy

Email: Gincy@365CaregivingTips.com
Twitter: GincyHeins
Facebook: G-J.Heins
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Website: www.365CargivingTips.com