Contemplating Dementia

Watching Susan’s battle with dementia has forced me into a sort of inner struggle about the whole thing. I have watched in wonder and asked “why” and “how” more times then I can count. My need to understand has carried me along a trail I would likely never have traveled if it weren’t for Susan. I have read books, met with strangers, spoken to doctors and nurses about dementia theories and care, hung out in hospitals, and searched my community for support.

Then there is the dreaded concern for my own husband and children since this disease is now in their family. My journey is not over, perhaps it is just beginning; but it has carried me to a place of personal conclusions. Conclusions that may (or not) be obvious when such a disease is starring us in the face, causing my lens into the future to appear to have gotten jarred along my way- jarred into an out of focus view. All that is clear is the step we are taking at this moment on this day of this journey of ours. This journey is a lonely one at times, but as I have lifted my eyes from my own steps, I have realized that there are others walking this trail- or a trail close by. There are unexpected persons who have come alongside, expected ones who are nowhere in sight. There is a God who carries me at times. All of us are moving along. We travel it together, Susan and I, this family, our readers joining in, you and you, this world, these people.

One thing about this journey that I want all of you to embrace is the clear fact that no two will suffer the same; each will have their own journey. Yours will not be ours; ours will not be yours. I have come to understand that every Alzheimer’s journey is unique. As peculiar as this might seem, I find myself extremely thankful to know that not every stage that Susan goes through is experienced by others suffering with this disease. In fact, I am happy to know (yes, even jealous!) that many persons with Alzheimer’s remain sweet and gentle and kind throughout their struggle. I have personally theorized that much of it depends on predisposition, even though I know this isn’t totally the case. I say this perhaps because it is true with Susan. In fact, much of what she portraits and projects into our path, frankly, is indicative of how Susan always was- long before any of us whispered the word Alzheimer.

Yes, I am saying what you think I am saying, however reluctantly. “Whew!” you might be thinking if you are a reader of my blog! “Thank God!” I understand your relief totally. Yes, much of what we suffer with Susan was, in lesser degrees, always present. I am trying hard here to not offend nor to be unfair to Susan. Certainly, (before Alzheimer)she had many good traits that I admired. She lived a fairly normal productive life, had a husband and five children, good jobs, was very fashionable in her own right and could grow beautiful flowers like no other!

I guess I am trying to say that we always knew there was something ‘not exactly right’ with Susan. Retrospect is always a clearer vision and from this view I may be tempted to label her lifelong behaviors with modern terms that we often throw around too easily, like: bi-polar, obsessive/compulsive, allusions of grandeur or self-absorbed. In fact, doctors have wanted to label her past with something; but what
good does it do now to psychoanalyze the old Susan? This is now. My only purpose is to give my readers deeper understanding into her behavior and to ultimately release some fears that my tales may create. Indeed, Susan seriously has Alzheimer’s. At the same time, Susan is just Susan! We love her that way.

(This photo, taken long ago, is of Susan and her husband. Those were the good days for her, I suppose.)