Living With Dementia and Faith and Hope
I began to read Thomas DeBaggio's Losing My Mind, hoping to find what life with dementia might hold for me. Instead, it directed my whole line of thought in another direction. What role does faith play in my life with dementia?
In this book, written in 2002, Mr. DeBaggio describes his life as a fifty-seven year-old diagnosed with Alzheimer's. This dreaded disease was hidden in his genes. My dementia is vascular in nature. Both of us were struck with dementia at a similar time in our lives. I read on, thinking that I would identify with the author. But the further I read, the more I realized that the only thing we had in common was dementia. The ways in which we handle it and how we view the future could not be further apart. At this point of realization, I made a mind shift to the role my faith plays in my dealing with dementia.
I think the biggest difference between me and Mr. DeBaggio is our view of life. Mine is based on God; he is an atheist. His whole outlook is vastly more negative than mine, and I think my faith in God accounts for the difference. Mr. DeBaggio writes predominantly about dying and death and fear.
The following is a quote by Harrison Emerson Fosdick:
"Fear imprisons, faith liberates; fear paralyzes, faith empowers; fear disheartens, faith encourages; fear sickens, faith heals; fear makes useless, faith makes serviceable."
Between lamentations of death, Mr. DeBaggio describes episodes which are eerily similar to some I have experienced. He wrote about visions of light when he closed his eyes at night. These visions danced and swirled within his sight as sure as if he had his eyes wide open. I have seen these same types of things. I lay down to sleep. I close my eyes. The normal person will see darkness. Sometimes my mind uses that time to have a psychedelic parade of objects go across my line of vision (remember, my eyes are closed when this happens. I see it all in my mind)...like a slot machine whirling and slurring by, full of bright colors. Whole scenes can be captured and twisted about...faces whir by...a Queen of Spades bends, then dances past...At first, I was delighted with the intense brilliance of it all. Now, I know that I need to work at calming these visions down and eventually they begin to slow down...and finally diminish...and I can sleep. I had no idea that this was common for a person with dementia, Deaggio confirmed for me that it is, and I'm grateful. Knowing that I am not alone in my illusions is strangely comforting.
Mr. DeBaggio made little mention of what he did to try to hold onto whatever cognitive ability he had. At the point at which the book was written, he seemed to go on through life, working with his vegetable business as much as he could as if all was normal. I, on the other hand, am taking a pro-active approach to maintaining and improving the cognitive ability I still have. Numerous computer games challenge my mind and maintain my typing ability. I bought a Nintendo DS Lite and use Brain Age games to keep my mind as nimble as possible. (The swirling clocks are busting my butt, though!) I play Oregon Trail and Solitaire... I write this blog, which makes me use the dictionary and thesaurus. All these activities, with the help of medication, have given me the ability to focus for a little longer than I could just six months ago. I'm not normal, but I can at least read a little longer, type a little longer, focus a little better.
I am using my faith to look at life today, in the present. Unlike Mr. DeBaggio, I do not hold onto the thought of death as though it is imminent. I do not worry about death. It is something which will occur when it is meant to be... and I must live life now to my fullest. After reading this book, I realize that I am far better off psychologically than its author...I choose to go through life in this way, with God beside me and in my heart, with days full of hope. I know my dementia will not go away. I cannot hope for that. But I can hope for days of sunshine which I can see and feel. I can hope for times to volunteer my time helping others, to meet new people, to learn whatever new things I can, to visit places which delight me at the time but that I may not remember later. For family reunions and bundles of hugs and catching up on old times with friends...