The question in 2006 that changed our path that night, “who are they?” in response to a comment I made about seeing old friends, began a journey that continues today. My immediate thought was to make a doctor's appointment with our family physician believing and hoping we would receive a diagnosis of 'overworked,' 'stressed,' etc. but it was not. The look of concern on the doctor's face spoke volumes to me, although I don't think Randy caught on at all. The doctor suggested that our next step was to make an appointment with a neurologist that he recommending.
I quickly contacted this neurologist and the appointment was set. The day of the appointment was busy like any other day and I just wanted to get in and out with an easy diagnosis of anything that was fixable. We went and sat in the waiting room with a sense of anxiousness and irritation permeating the entire atmosphere. A short meeting with a less than compassionate neurologist ended with a diagnosis of early onset Alzheimer's. He was 57 years old. Funny, I thought, I was hoping she would say it was a tumor or something, anything that could be removed or fixed! We left that office stunned, and angry, “it's a lie,” I said, "that's not what you have." So began a series of personal tests and trials all pointing to the reality that something was definitely wrong.
The phone calls were what I initially dreaded the most, “I ran in to Randy today, what's wrong with him?” “Did he have a stroke?” “He's acting funny, using bad judgment etc.,” “Susan, I hate to say this, but something is wrong with Randy.” and on and on and on they came. The more I attempted to tell him that something was wrong and other people were worried too, the angrier he got. I felt trapped and alone.
Someone recommended a medical facility specializing in dementia with a research program that I might be able to get Randy into. I made yet another appointment grasping for some hope, help, clarity, or answers...none were coming. The doctor examined Randy and came up with a more detailed diagnosis, Frontotemporal Degeneration; basically, the front, right, part of Randy's brain had begun to atrophy. The reality of what was being said sunk in as I stepped out into the hallway and cried. “What in the world am I going to do?” In no short order they had him signed up for a research program dedicated to this disease. I had a moment of hope but it was quickly dashed when I realized the doctor was viewing Randy more like a lab rat than a human with a debilitating disease...I didn't take him back.
The personality changes were acute and worsening day by day. I had to get help. I finally got him to a kind, compassionate, neurologist, that was recommended to me by an acquaintance that was also struggling with her husband and the same diagnosis. This doctor was also involved in research but the difference was notable from the beginning. He looked right at Randy and said, “You are my patient, yes, we will be giving you tests etc. that once the results are in, will help a lot of people, but I will be caring for you.”
The lie turned out to be true and we made weekly visits to this office for months of treatment and tests which always included blood work, MRI’s and what seemed like hours of questions and interviews...it was exhausting mentally and physically. These weekly visits continued until he could no longer answer questions like, “Can you name a farm animal?” “How many children or grandchildren do you have?” “Who is the President of the United States?”
The research for Randy was over. I was now embarking on the next level of this dreaded disease with the path I had to walk looking like a dark, scary, unfamiliar, route that was taking me into uncharted territory. Knowing the diagnosis did not make the path ahead any clearer.
Three things I learned that could help you: