One day at work my mother called me to tell me my dad was “lost.” This is how I found out that my father had Alzheimer’s. My father finally made his way back home on this particular day, but after this, everything was different. I understood immediately that my parents’ home life had changed and that my mother was not prepared for the changes still to come. I decided to leave the job I had at the time and move into my parents house to help care for my father.
As my father’s health deteriorated, his disease became the family’s disease. Everyone was affected. I was caring for both my father and my mother, who was brought to the brink of exhaustion and frustration by her designated role as caregiver. When the neurologist told us that there was nothing else he could do for my father, we were devastated and desperate for other possibilities. We searched for answers the way many families in this position search. And thankfully, we were fortunate enough to find some. My mom discovered a doctor who was doing a clinical trial for a new Alzheimer’s drug years after our journey with Alzheimer’s began. We visited Dr. David Watson from the Alzheimer’s Research and Treatment Center and this experience, although short-lived for our family, was encouraging and, I think, can give hope to others.
I was my father’s secondary caregiver for years before my filmmaking senses kicked in. I knew I had to pick up a camera and start filming. I just sensed that something was happening that needed to be documented. The access I had gave me something that has never been captured on camera. Ever. And because I was, and had been, a primary caregiver, the community surrounding my father trusted me. The camera just became an extension of my arm — I documented the heartbreaks and challenges that a caregiver faces every day. I was a caretaker and a “fly on the wall” during the heartbreaks, setbacks, and moments of shared tenderness and small victories that make up the life of a family caring for someone living with Alzheimer’s. I didn’t realize the importance of what I was filming until years later when I finally logged the footage.
An epidemic of unprecedented proportions is headed our way as our population continues to age. Most of us are ill prepared for the realities of what dimentia-related illness means for our families. I hope that my film can shed light and bring understanding to caregivers of Alzheimer’s patients in order to ensure that, collectively, we are better prepared for the challenges of this overwhelming and life-changing experience.