A Son's Handbook

As with all things to do with MOM, there was music. The anecdotes, stories and lessons learned, contained herein would best make mom happy if put to music and in some fashion it has. My mother was born Bertha Ethel Bever, December 23, 1914 in Fitchburg, Massachusetts, the second youngest of eight sisters and one older brother. She was known to her friends and family as “Bokie” or “Bert”. To me she was just “mom”.

I am Stephen; Bertha’s youngest of two sons, “Stevie” as mom called me. Bertha’s oldest son is “Tommy”, my brother, a quiet, honest guy who is retarded and often emotionally fragile. Bertha’s husband of 52 years, my father, was “Joe”, a difficult man both to cope with and understand. Dad was often violent, usually intimidating, but like mom, very musically talented.

When I was a child my mom was my best friend, my teacher, my confidant. As I stepped out of our home into the world to achieve some victories and absorb some failures, mom and I grew distant as some parents and children do.

When dad died, both mom and Tommy became my responsibility. In the cyclical fashion of life, mom was mine to love and care for, almost as she had done for me as a young boy. You see, mother lived those last dozen years of her life with Alzheimer’s disease/dementia. I shared the last ten years with mom meeting the challenges of this disease with her.

Despite the endless string of pamphlets, medical journals, websites and bookstore offerings, there was no handbook for sons on how to take care of a mother with Alzheimer’s/dementia. Generally speaking, there is no “how-to” manual or operations manual for SONS. There are “how-to” texts for gardening, home repairs, hitting a baseball and for virtually every topic one can name. How is it that no one ever wrote a “how-to” book on how to be a son?

However, there is an implied “How-to” manual for sons. It isn't written down anywhere, but it is the fusion of all the rules and routines that parents impart to us. Generally included are such standards as brush your teeth, wash your face and hands, kiss you aunt, shake hands with your uncle, don’t fight with your brother, do all your homework, take out the trash and walk the dog.

Yes, there is an unwritten handbook for sons, but nowhere in that implied son’s handbook is there a chapter on what to do when your mother or father is stricken with Alzheimer’s disease/dementia and you as the son must take care of them.

This narrative represents the synthesis of ten years and thousands of pages of a daily chronicle I wrote when mom became the most important responsibility in my life. With great prayer, my writing allowed me to navigate the mental, emotional and physical challenges of this disease on my mother and me. These brief chapters offer no clinical or medical advice. That remains the domain of trained medical professionals. Rather, this narrative focuses on common issues relative to Alzheimer’/dementia that we as sons and daughters are compelled to address every moment of every day, armed with nothing more than what our parents and God have given us … our love.

With each entry into my daily chronicle I asked God to impart a lesson to me. With all of the tug and pull on my heart and the greater damage that dementia was bringing to bear on my mother, I needed to learn how to meet all her needs. To be sure I didn't care for my mother alone, but standing in the decision-making chair was just …. me. Each day in a quiet moment I would write down what I saw … how I responded … what worked … and what didn't. I sure made a lot of mistakes. There were many evenings when I sat at mom’s beside with my pad on my lap and wrote every word she uttered. I recorded her expressions and my feelings as clearly as I could. My chronicle sometimes looked like an exercise in the Cornell note-taking system because I wanted to be a better son, a better man than I was.

With the “suddenly moment” with mother, the first salvo of Alzheimer’s/dementia against my limited frame of reference, I understood that I wasn't prepared. The reality that I was inadequate to correctly address the needs of my mom with uncontrollable bodily functions, dramatic mood swings, fantasy melodramas, mixed with the basics of daily care, sometimes overwhelmed me. The only constant, my bastion of strength was that God had this whole situation in control. I was exactly where God wanted me, doing precisely what HE required me to do. My daily writing was my way of connecting all the pieces of my life that were changed due to mother’s Alzheimer’s/dementia.

At the end of most of these chapters there is a “Son’s Rule”. Each of these represents a lesson learned each day, so I might approach the next hour or the next dementia generated challenge, a better son for my mother. God is always talking to us, especially in times of great tribulation.