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A Story of Love and Learning

When my mother had cancer close to 15 years ago, my sister-in-law, brother, or I took her to every appointment. We were there with her for every chemotherapy treatment. We worked together as a family, with Mom at the center, battling against the non-Hodgkins lymphoma that invaded her body. Up until that point, it seemed like that was the fight of our lives.

Mom survived non-Hodgkins lymphoma and lived a decade free of that disease.

She won that battle, but not the war.

On March 6, 2013, not even ten years after she was diagnosed with cancer, Mom was diagnosed with Alzheimer’s disease.

This disease was different. It took Mom’s mind so slowly at first, and then it took her body. Bit by bit, every human ability to function was gone until it stopped her breath.

Mom passed away on June 29, 2017, four years and four months after her diagnosis.

During most of that time, my husband and I lived with her, and I was her primary caregiver. I knew, as did my mother, that Alzheimer’s disease was fatal. Years prior, we watched my mother’s mother and two of her brothers die with the disease. It was my mother’s worst fear.

And I felt helpless.

All I knew to do was to love and to learn.

So, I strove to bring Mom as much joy as possible each day, and to never let her feel like a burden.

I also studied, read everything I could find on the topic, documented every doctor’s visit, took notes, listened, and learned. When your loved one is going through Alzheimer’s or another dementia, there is so much to learn at every stage of the disease that will inform so many actions and decisions. All of the information may be new to you. You may not know what your loved one might go through throughout the course of the disease, where to look for help, or how to decide on the best help. And, in many cases, you are solely responsible for making the decisions for your loved one, as this disease prevents them from participating in decisions when they are made.

This book is my effort to take what I learned—both about loving someone through this disease and about the knowledge that is important for people impacted by this disease—and share it.

Every chapter of the book represents a stage in dealing with the disease and begins with our very personal story. The personal experiences shared are not meant to imply that everyone will undergo the same, as I have been told by many medical professionals that no two instances of Alzheimer’s disease are identical. But I believe that sharing the personal experiences throughout the book as honestly as possible is critically important, as fully honest depictions of the disease were lacking for me. In general, people who have not yet dealt with the disease do not seem to understand its true impact. Movies often romanticize the disease and leave people thinking that it has only to do with losing one’s memory. Books often take a purely medical perspective, and do not address the personal and emotional journey.

The personal story that begins each chapter is mostly focused on the experience my mother and I had together with this illness. I have purposely not included a great deal of information about other family members, such as my brother, my sister, and their families. This is because I do not want to invade their privacy or speak for anyone else. I have shared everything that I am comfortable sharing and that I am fairly certain my mother would be comfortable with me sharing.

While every chapter begins with a personal story, it continues with a summary of the knowledge that is important for people who are dealing with this disease. The chapters end with a section titled “What Next?” with ideas for steps to take if you or your loved one is impacted by the disease. There is so much to know and so little time to learn it when you are caring for someone who has Alzheimer’s. I hope this book will make this learning easier. While not meant to provide definitive or comprehensive medical information, it highlights information that I learned along the way from solid sources. At times, this book may suggest a bleak picture in terms of the support and options available for those impacted by the disease. To be sure, everyone will not have the same challenges as we did in areas such as finding the right caregiver, the right doctor, or the right experimental trial. I am conveying our specific challenges, but trying to do so honestly and being as vulnerable and open as I can in doing so.

This is a disease of losing one’s mind, one’s identity, and, eventually, every bodily function because as the brain goes, so does the body. Just think of that. What can possibly be more devastating?

My hope is that this book will help caregivers face this devastation with knowledge, compassion, confidence, and resilience.

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