Introduction

From Chicken Soup for the Soul: Living with Alzheimer's & Other Dementias

Introduction

Stories can conquer fear, you know. They can make the heart bigger.

~Ben Okri

Alzheimer’s disease was first discovered in 1906, and in more than 100 years, a lot has changed. For too long, those facing the disease struggled in silence. Consequently, the misconceptions, misdiagnoses, myths, and stigmas around Alzheimer’s grew and grew, partially due to our own inability to find the words to share our experiences.

The stories inside this book reveal a new world for the Alzheimer’s community — a world where we’ve discovered the strength to speak up and work together to defeat Alzheimer’s disease and other dementias. This new world is one that the Alzheimer’s Association®, the leader in Alzheimer’s care, support and research, is proud to help grow and shape. More and more, Alzheimer’s is discussed among friends and family in the home, in workplaces, in places of worship, and beyond. People with Alzheimer’s participate in support groups and online forums and advocate for needed change. It is no longer assumed that Alzheimer’s is a normal part of aging — instead, it’s recognized as a fatal disease that demands better methods of diagnosis and treatment.

Indeed, the dialogue is increasing, but we still have a long way to go. Currently, at least 44 million people worldwide are living with Alzheimer’s or another dementia, and if trends continue, this number could triple by 2050 to 115 million. As the baby boom generation ages, Alzheimer’s will continue to escalate, threatening families, communities, and nations with economic, physical, and emotional devastation.

That’s why it’s so important that this collection of stories exists — so that while we press forward with care and support for affected families, and strive to advance research that will one day lead to a cure, we’re sharing information, compassion, and advice with one another. We’re speaking up about the realities of Alzheimer’s, and together, we’re breaking through the stigmas that exist.

Receiving an Alzheimer’s diagnosis — or learning that a friend or family member has the disease — is often a shock. In Chapter 1, “Accepting a New Reality,” our authors relate how they adjusted to life with Alzheimer’s. Ginny Dubose, who works in the senior housing industry, encourages people to “join the journey” and live in the moment alongside the person with dementia. Singer Joey McIntyre of New Kids on the Block describes how he acknowledges his mom’s sense of self, which is still strong despite her battle with Alzheimer’s.

In the second chapter, “What Does It Feel Like?”, some extremely brave authors living with dementia attempt to answer this all-too-common — and perplexing — question. These individuals express their intimate thoughts about the disease while describing the ways in which they work to live their best life. While their perspectives are unique, these courageous contributors share a sentiment aptly stated by Cynthia A. Guzman: “As this disease progresses, I won’t remember anyone, but I want to live my life so that people will remember me.”

Those impacted by Alzheimer’s know that coping strategies are critical to moving forward after a diagnosis. Chapter 3, “Strategies and Tips for Coping,” features insightful and useful tactics for life with the disease. Fred Kinsinger writes about how he created a special clock for his wife, one with only an hour hand — a gift that solves a practical challenge while also serving as a symbol of his love. Johanna Richardson tells us how she “learned to lie” in order to be a better caregiver, and Laura Suihkonen Jones encourages those affected to build a fellowship with others facing the disease.

As Alzheimer’s inevitably progresses, people facing the disease are confronted with difficult questions: How do I deal with what’s happening right now? How do I prepare for the future? In Chapter 4, “Next Steps and Tough Choices,” authors share how they tackled issues about home care, assisted living facilities, driving, and other challenges — and how they dealt with the conflicting emotions that came along with them. After moving her mother into a nursing home, Carolyn Mers tells us, “Did I have doubts about my decision? Almost every day. Did I think I could do a better job? Sometimes. Did I know that she was in a good place? Always.” The honesty of these authors will provide strength to anyone who has faced a similar situation.

Alzheimer’s disease often creates a heartbreaking role reversal: Spouses assume the other’s responsibilities, grandchildren “watch” their grandparents, and perhaps most difficult of all, children must care for their parents. Chapter 5, “Taking the Journey with Your Parent,” provides inspiration and coping techniques from those who’ve been there. But this experience, however painful, is not without its own reward, as Ann Napoletan relates. Describing her relationship with her mother after Alzheimer’s, Ann says, “Ultimately… our connection was strengthened exponentially, and I felt closer to her than ever before. It’s a testament to the fact that even immense loss and heartbreak can bring blessings.”

Our “Younger-Onset Alzheimer’s” chapter offers inspiration and support from a unique perspective. Currently, there are more than 200,000 people under the age of sixty-five living with Alzheimer’s; these individuals and their caregivers face a unique set of challenges at work and home. In “The Hardest Day,” Karen M. Henley describes her husband’s diagnosis at age thirty-six, his brave fight with the disease, and the pride she feels that her two young children, Courtney and Brandon, helped care for their father at home until his passing.

Marriage vows, and the ways in which they’re tested by Alzheimer’s, bring new light to their meaning. Chapter 7, “In Sickness and In Health,” details how the disease can change and deepen the relationship between spouses. Deborah Shouse learns a valuable lesson from her once-stoic father as he openly revels in her mother’s spirit and beauty, even as he loses her to Alzheimer’s: “I fully understood what my father had always known: Beauty is there, if you’re looking with your heart.”

While Alzheimer’s causes immeasurable pain, the disease also presents us with moments of laughter we learn to appreciate in order to get through the tough days. Chapter 8, “The Lighter Side,” includes some hilarious anecdotes from authors like Jean Salisbury Campbell, who tells a laugh-out-loud story about her mother’s insistence that a bird was loose in the house — and, when revealed to be true, what happens when the family cat finds it. This chapter demonstrates the power of laughter and the valuable lessons that can come with a smile.

Many of this book’s contributors share their experiences with art, music, dance, and other forms of therapy as a way to reach the person living with the disease. Our “New Ways to Make Connections” chapter describes how undiscovered abilities and long-ago melodies can spark moments of clarity and connection. In Robert Nussbaum’s story, “The Man in My Mother’s Room,” the sounds of Frank Sinatra bring his mother back to him, if only for a few minutes. In “Hidden Talents” Marjorie Hilkert connects with her father as he demonstrates his previously unknown gift for painting.

Alzheimer’s is a disease that no one can face alone. We draw strength from our family, friends, and sometimes even strangers — people who are walking the same path alongside us. In Chapter 10, “It Takes a Village,” authors convey stories of unexpected friendship and compassion. Louise Harris Berlin recounts how her brothers, Russ and Reed, embraced everyone in their dad’s memory care unit, making the entire group a new kind of family, and even continuing to visit the other residents after their father was gone.

We close the book with Chapter 11, “The Special Bond with Grandchildren,” highlighting this powerful relationship, which Alzheimer’s often heightens. Grandchildren learn how to be caregivers, take on responsibilities far beyond their years, and learn to value every moment with their grandparents. In “Understanding Nana,” actress Sarah Rafferty recounts the fierce protectiveness she felt as her grandmother battled Alzheimer’s, and the ways in which Nana will live on through the future generations of their family.

Anyone affected by Alzheimer’s or another dementia should feel a sense of ownership when they pick up this book. I hope that in these stories, you can see yourself, you can learn something, and that you are proud of this movement — of this caring and compassionate community — that you’ve helped build. I urge you to take action in the fight, whether by sharing your experience, speaking up, or spreading the word — so that someday, the only story we have left to write is about the end of Alzheimer’s disease.

~Angela Timashenka Geiger

Chief Strategy Officer, Alzheimer’s Association

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