and every solid rock longs for flying with the wind.”
– Mehmet Murat Ildan
I am not an award-winning doctor; I am not an investigative reporter; and I am not a celebrity. I am a dementia caregiving survivor, ready to share my personal experiences and reflections about the disease that ravaged my mother before her death.
I have been a transformation and change champion working with senior leaders of businesses, government agencies and non-profit organizations for years. I have worked across five continents meeting with thousands of people focused on change. They wanted to change their vision, their business strategy, their business results and their very place in the world. Although I could help them, it was much more difficult to help myself on the journey of transformation my mother and I shared as dementia absorbed her life. The story of this journey has been stirring in my soul, driving me to connect with others who have taken or are currently on the path with a loved one.
My Mother’s Illness
“The day the wheels fell off” refers to the day that my family was left with only one option – to involuntarily commit my otherwise healthy mother to a locked psychiatric ward so that professionals might stabilize the psychotic delusions and hallucinations that plagued the onset of her dementia. My mother’s case presented little evidence of the more traditional memory loss and confusion that people expect with the onset of the dementia diseases. Through research I learned that 10-15% of dementia patients experience significant delusions and hallucinations in the early stages of their illness. That’s more than half a million people with the disease.
I didn’t ask for the role of caregiver. I didn’t want the role. But as with many, it fell to me. My family was steeped in the Italian-American tradition of cross-generational care. There were ongoing expectations, compounded by a feeling of falling short, wrapped around a perpetual sense of guilt and conflict. My family, like so many others, was beset by long-term strains, but as her illness deepened, we unified in the dedication to our mother’s care.