Nearly 10 years ago I diagnosed my mother and now feel compelled to share what I’ve learned during this journey through Alzheimer’s disease. Through the years, I have been her advocate and caregiver. But most important I’ve made all the decisions guiding her care and quality of life. At the outset, I knew very little, had no idea what to expect and was naïve to believe that life would – or could – go on as normal. But I’ve become acutely aware of the emotional rollercoaster that throws normalcy to the wind.
Most people do not understand the impact of the disease as they have not been directly touched by it. Therefore, many believe that Alzheimer’s is simply a loss of memory and that the person suffering from it becomes repetitive in speech and behavior. While these are common, early symptoms, this disease is much more pervasive than forgetting names and places. Actually, I would describe Alzheimer’s disease as a slow, undignified march to complete mental vacancy accompanied by physical decline.
As expected, there is a lot written about the clinical aspect of Alzheimer’s and even the progression of the patient’s symptoms. We have all read the novels and seen the dramatic movies that seem to end comfortably. But from my experience, there is not a lot written about the emotional aspect of the disease meaning the angst felt by family and friends.
Why I’m writing
I’ve had moments when a phone call rocked my world while standing in the middle of a crowded store. I want to share the stuff no one wants to really talk about. Can this information help someone newly diagnosed while they can still plan? I want to write for the families and friends who want to love and support an Alzheimer’s patient. And I even want to write for healthcare workers who might not otherwise see things from the patient or family perspective. In the long run, the loved ones suffer, dare I quantify it, as much as the patient.
Finally, if I can let someone know that they are not alone in what they feel, then I have contributed something. While these are my stories about our journey through Alzheimer’s disease, we are not the first to experience them.
“To understand the devastation that is Alzheimer’s disease is not to intellectually understand the clinical decline of the patient, but to feel the emotional suffering of the patient’s loved ones.”
Nancy Peterson
Latest Posts: