By Trish Laub
I made a promise to myself that reflected the love of a youngest daughter for the dad that was always there for her. I was told that my dad had been diagnosed with Alzheimer’s in 2002. My mom didn’t tell my two sisters and me for several years. She was trying to protect us and protect her husband and best friend to whom she was married for 69 years. When I finally learned that dad was living with Alzheimer’s, I vowed to maintain his dignity, quality of life and safety until the end. I always knew that I wanted to take care of my parents should they ever need it, but the Alzheimer’s diagnosis added an unanticipated complexity. Just 48 hours after my husband and I moved across the country to be near my parents, my father experienced a medical crisis, setting into motion a two and one-half year journey of care during which my mom was diagnosed with stage-four cancer. I managed the care team and my parents’ medical care, and was a hands-on caregiver on the weekly schedule. My sisters and I delivered the dignified care and end of life our parents desired.
After both of my parents passed in 2014, I was exhausted. At first I needed some time to re-energize and regroup. Although I had many requests and much encouragement to write about my experience, for the next three years I tried to talk myself out of doing it. I knew that I had amassed an abundance of knowledge from my experience and could help others go through the process thriving instead of surviving. During that time, I was presented more opportunities to both provide care and to teach others how to care for their loved ones. In the end, I could not make myself walk away from the personal mandate to write the books and offer the services that so many caregivers need.
The result was the Comfort in their Journey three-book series that I wish had been available to me during my journey. Rather than narratives, the books weave my story into the quickly accessed nuts-and-bolts caregiving information, tips and resources. The books offer caregivers the opportunity to thrive throughout a process that is often traumatic and stressful and allows little time to research before making critical decisions. The books enable family members and other caregivers the opportunity to know the options and to make informed decisions -- to think and then to take action.
A Most Meaningful Life, my dad and Alzheimer’s is the story of my family’s commitment to ensure a life of quality, dignity and potential for my dad. It was written to replace the unfounded stigma around Alzheimer’s with facts and an understanding of the disease, and to help others see that even with Alzheimer’s, the possibilities are limitless and a meaningful life is possible. Additionally, this book offers my family’s philosophy, goal and strategy; our successes and failures; and special considerations necessary for successful caregiving.
Understanding the nuances of providing dignified care, and the necessary preparation for and process of the end of life is important for all caregivers, it is even more so for those caring for a loved one living with dementia as their loved one’s ability to self-advocate is diminished over the course of the disease.
I have found peace knowing that sharing my experience is helping others thrive on their caregiving journey. Readers have found comfort in having these guides to create a plan for providing dignified care, for carrying out a loved one’s end of life wishes, and in having easily accessible answers to the many questions that may arise during the journey. Most important to me has been feedback from readers who say that A Most Meaningful Life has helped to allay their fears and dispel the stigma regarding Alzheimer’s, allowing them to understand the possibilities and empowering them to be more present and successful caregivers.
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