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The Story Behind the Title "he used to be Somebody, A journey into Alzheimer's through the eyes of a caregiver." |
Numbers of caregivers have approached me, some of them outwardly angry at the title of this book.
I was completely caught off guard with those comments. It was as if I had somehow dismissed Tom's essence as a human being by those words, a reaction that had never occurred to me or my publisher. Considering that everything I'm about belies that assumption, I truly feel an explanation of how the title came about is absolutely necessary. The title of the book was non-negotiable. The title, the cover, the scope of what this book was to be about all happened in split second and the book itself was a fete complie as far as I was concerned. Tom and I were at a holistic clinic in Phoenix Arizona for 6 weeks in an attempt to improve his cognitive functioning. I devoted an entire chapter to that experience in the book so I'm not going to go into all the particulars here. Prior to leaving to attend the program Tom was unable to hold even a simple conversation, he was horribly confused about everything, depressed, dismayed and wishing he could die. After six weeks his demeanor, his speech, his concentration, his ability to engage the world around him had improved so much that his neurologist at home in Chicago had to rethink his diagnosis. Perhaps it wasn't Alzheimer's after all. However, once we were out of the rarified air of the accepting climate of the clinic community, he slowly began to deteriorate again. Even so, we recovered at least another year of laughter and love that probably wouldn't have happened had it not been for that Phoenix experience. My sister spoke of 'a cure,' when we returned, but in reality I believe that Tom's improvement had more to do with alleviating the stress that surrounded us at home. He was accepted as a whole human being in Phoenix, he was given exercises to do, tasks to accomplish every day and in essence was given the choice of taking charge of his life and his illness. Tom being who he was grabbed it and ran with it. His depression lifted and he was able to function at the highest level his illness allowed at the time. During our stay our diet was monitored, we had daily massage, Tom also opting for acupuncture, treatments we continued after our return home. There was a marked difference in the clarity of Tom's ability to speak immediately after these treatments which would abate as the days passed between treatments. Call it hocus pocus, call it whatever you like but it worked for us and it gave us more time than we might have had without it. God knows, the doctors had nothing to offer us and the present drugs available today weren't available to us at the time. We also took a stress reduction program, entered into couples therapy and individual session, we examined our fear of dying and we examined our dreams. The time the money and the effort were worth the months we regained. It was Tom who encouraged me to write this book when we returned from Phoenix and it was Tom, who unwittingly, gave me the title. The words "he used to be Somebody,' emerged out of the symbolic language of a dream he had while there and they embodied the mourning he felt for his lost life. The Dream
As he spoke those words I knew "he used to be somebody," was going to be the title of a book I hadn't even considered writing at that point. I also envisioned the cover which is just as it is today and I knew somehow the book was going to be a reality. With those words Tom not only recognized his grief over his lost life, but he also took his life back. The change in his functioning began that moment and I have the video tapes to prove it. It was one of those bright moments in his illness, when communication found an outlet in a way so unappreciated by those outside that community. The richness of the symbolic language of that dream spoke volumes. The imagery not only expressed his deep feelings about what this disease was doing to him, but it spoke of the demise of his relationship with the world around him. How he longed for the respect that so eluded him after the symptoms became noticeable. To see him dismissed as viable by others was the most difficult part of being with him throughout his illness and it haunts me to this day and he has been gone almost 6 years now. The point to be made is this: Even when Tom was bed-ridden, unable to speak, incontinent and emaciated from what this disease did to him, his basic human essence was not compromised by this disease process, because I refused to let it, something I reiterate over and over throughout this book.
My experience with Tom ultimately belied the rhetoric that exists about this illness. It wasn't all doom and gloom. It was hard, but then losing my father to Cancer wasn't any picnic either. In both experiences, there were moments worth hanging on to and through it all, there was the peace that followed the experience of unconditional love, which is what caregiving is all about in the first place. I refused to see myself as a patsy and I refused to let a disease process determine the human worth of my husband. I decided to write the book I wish I could have read when Tom and I started on this journey. The feed-back I've received from caregivers who've read it has been positive on that note. And speaking of notes. I hope you will check out the segment titled "The Songs," in this part of my web page. I collected the lyrics of 15 of the old standard love songs and began each chapter with one of them. These songs were chosen for a reason: We also share a commonality, a history with these songs which speak to a time when commitment, unconditional love, and sacrifice were thought to be positive qualities. My experience proved to me that those qualities still have a place in our lives and their power to strengthen in times of great need should not be underestimated or dismissed.
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