My name is Susan Miller and, I believe, you have found me for a reason. In fact, I think we share a similar circumstance… one that is unfortunate, isolating at times, and often misunderstood and feared by those frightened by Alzheimer’s and Related Dementias. This is a diagnosis that calls for an ever evolving set of caregiving skills as it proceeds from one stage to the next. I want you to know that you will not be alone on your journey, and there are many moments of joy, connection and love that you will find along the way to sustain you. Myself, and thousands of others, have been on this journey before you, traversing its path, and although we may not know each other, we are kindred spirits. By sharing my journey with you, I hope you will not feel so alone and will find support and validation.
My late husband and I met briefly when we were just children. Years later we met again, fell in love, married, and created a loving family and many wonderful memories. After our two grown children graduated from college, we were excited about the next phase of our lives; a life we had been eagerly anticipating and planning for a long time. It would be a time for just the two of us to relax, travel and enjoy life, while slowing down the pace of our careers, in preparation for full-time retirement.
But as our plan was beginning to take shape, something else was occurring; something that I could not understand or really describe, and that caused an uneasiness to stir inside of me. My husband, once a man of intelligence, composure, and tact, was changing ever so subtly. It was as if he was slowly slipping away from his former self, and from me. At first, it was small things like, forgetting important dates, and directions to places, which were easy to ignore or find a reason for.
At that time, I did not know what I know today – that he was in the initial beginning stage of Alzheimer’s. At this juncture, unbeknownst to us, our lives began the process of being altered or, as I like to say, rearranged. In our mutual fear and denial, we thought it was just part of getting older, until it could no longer assumed to be that. Many trips were made to a variety of doctors before my husband received a diagnosis of early-onset Alzheimer’s; a diagnosis which totally shocked us and raised a barrage of questions, for which we had no answers. We were shattered and felt as if the world had fallen out from underneath us, as we wondered and worried about how we would cope. We spent the next few weeks sharing the news with family and close friends, who just like us, had many questions. I am sure you have questions and, hopefully, you will find some of those answers in MY LIFE REARRANGED.
Vows taken long ago, when we were young and full of dreams.
When they were just words, part of a ceremony.
When the future loomed bright.
When Alzheimer’s was referred to as senile dementia, and just for the elderly.
When surely nothing would befall us, and when love was the answer to all of life’s problems.
Now thirty-eight years later, with a diagnosis of Alzheimer’s, we have become a grim statistic; some 6.8 million strong.
Our life together fast forwarded and condensed; both at the same time, giving it a surreal quality.
And the belief that nothing bad would befall us, shattered like our dream,
along with the knowledge that love is not the answer, only a part.
