A Most Meaningful Life, my dad and Alzheimer

By Trish Laub, Memory Cafe Directory, online directory, February 13, 2021

“I have a story to share. I am a daughter who took the walk through Alzheimer’s with my dad, a journey that did not come with a roadmap.” Those two sentences start my book, A Most Meaningful Life, my dad and Alzheimer’s.

“If it was possible for my dad…then it’s possible” is the title of the first chapter in book one of my three-book series offering actionable information about living with dementia and providing dignified care through end of life for anyone with a life-threatening diagnosis.

“I cannot speak to what anyone else’s experience with the disease will be,” I tell readers in that chapter. “But after 12 years of treatment, and likely eight more living with Alzheimer’s, the day on which my dad was last conscious he called me by name and spoke words of meaning only to me. He sat with my mom, held her hand, knew exactly who she was, and told her how much he loved her and that she was the love of his life. He was tired of living in the body that had carried him for 92 years, and it was time for him to go. That to me was the ultimate success!”

The book’s mission is revealed in the conclusion of the first chapter:

“Through the story of our journey,  I hope to inspire you to think, to know that even with Alzheimer’s Disease, the possibilities are limitless. With a clear philosophy and the creation of a strategy, you too can have a roadmap and navigate your loved one’s journey so that they have ‘a most meaningful life.'”

For two and one-half years, I managed the daily care and medical care of my parents, one living with Alzheimer’s and one with stage-four cancer. I also was an active caregiver on the weekly care schedule.  Caregiving was more challenging than the combined responsibility of all tasks or roles that I had assumed in my 54 years prior. But, it was the most rewarding and satisfying experience, as I was successful at fulfilling my goal of delivering the dignified care and end of life that my parents desired.

I had no roadmap and was unfamiliar with the medical system and caregiving industry. I didn’t know the lexicon specific to those communities in order to even search for help. I had to learn so much, so quickly and make decisions without enough information or time. I wish that I had had the Comfort in their Journey® book series.

Although my dad was diagnosed and had been treated for many years and my mom had been well, medical crisis hit both of them quickly. Forty-eight hours after my husband and I moved across the country to be near my parents and the Colorado Rocky Mountains, my dad had an unexpected surgery that threw him into full blown tilt for nearly 20 weeks requiring full-time care and oversight. About three months after getting my dad back on track, my mom was hospitalized for multiple life-threatening conditions. Thus, the journey began, and I was standing in the middle of a 5-alarm fire.

Fast forward to 2014, the year both of my parents peacefully passed away at home, surrounded by their loving family. I was exhausted. Despite continuing requests for me to publish the information that my family had meticulously gathered and documented, as well as the forms and procedures we had created, I was reluctant. I was being told that I was an expert on caregiving, but I didn’t feel that way. I knew that I was only an expert on what I had experienced and I wasn’t sure that it was enough.

The Desire to Walk Away
How I made the choice that led to a book series

My husband and I had decided to move 1,000 miles across the country because he had retired. And now I was being asked to start a brand new venture to help others. After three years of actively trying to walk away from the experience I had gained and the information my family had amassed, I found myself seated in my office writing books.

The books were carefully designed for those in care crisis. What I had thought would be two books quickly became three filled with bullet-pointed lists of things to do and questions to ask wrapped in just enough story to support the choices and decisions that worked for us. They are formatted with a larger character font for ease of reading and ample white space on the pages so the reader is not overwhelmed. Not necessarily designed to be read front to back, the table of contents is extremely detailed allowing the reader to quickly find the topic they need. Each chapter is broken down into several sub-chapters, which in most cases are very few pages.

The books were also designed to minimize the repetition of topics. For example, because of its importance, the topic of patient advocacy is addressed in each book but detailed in Through the Rabbit Hole. The bulk of the content is actionable information.

What resulted is the award-winning book series that consists of A Most Meaningful Life, my dad and Alzheimer’s: a guide to living with dementia; Peaceful Endings, guiding the walk to the end of life and beyond: steps to take before and after; and Through the Rabbit Hole, navigating the maze of providing care – a quick guide to care options and decisions. Through the Rabbit Hole and Peaceful Endings guide readers to provide dignified care through the end of life regardless of diagnosis. A Most Meaningful Life is specific to dementia and layers on top of the information in the other two books, identifying dementia specific considerations and tips.

The Basis for Much More

The writing of the book series resulted in the founding of Comfort in their Journey®, a business that offers practical guidance for families and caregivers who are taking the Alzheimer’s journey with a loved one or patient, and information applicable to individuals with any serious medical condition on how to ensure dignified care through end of life. I now lead presentations and workshops and offer consulting services on the subjects covered in the books.

Recently, I debuted a bi-monthly live radio show, A Cup of Comfort™, during which my guests and I discuss CareHero™ topics that nobody wants to talk about, sometimes uncomfortable topics ranging from specific care needs to the details of the end of life. Most recently a website membership option was created to allow for searchable access to the text of all three books, articles, and blogs that I’ve published, as well as discounts on book orders and other services. All of this is a result of writing the Comfort in their Journey® book series.