Today marks the beginning of a monthly column by Richard Taylor. He has been living with the diagnosis of Dementia of the Alzheimer's Type (DAT) for almost five years. Many of you know him from his thoughtful responses to articles in The Alzheimer's Daily News. His column reflects only his feelings and thoughts. He does not claim to represent anyone else with the disease nor how they may think or feel. However, we do believe his words resonate with deep wisdom and inform all of us, whether we are caring for a loved one, living first hand with the disease or trying to learn more about Alzheimer's disease. We encourage you to respond to Richard's views.
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About a year and a half ago, I gave up hope. I gave up hoping tomorrow would be better than today. I gave up hoping a cure would be found for Alzheimer's disease that would cure me. I gave up hoping my disease would abruptly stop its progress between my ears. I gave up hoping my life would improve. I even gave up hoping my life would return to how relatively much better it was than it is today, or tomorrow, or all the tomorrows I have left to experience.
Finally, I decided hoping was a waste of time, and time was something I especially could not afford to waste. Hope was a waste of energy, because I was hoping for things to happen over which I had no, or increasingly little control. Hope was for those who could afford the time and energy to spend hoping, and definitely not for us, especially me, who could not afford to spend minutes, hours, even days hoping, wishing, asking, waiting for something to happen over which I had no control.
I know that many of my care takers spend lots of time hoping. They hope I will get better, and if that does not happen, they hope I will not get worse. They hope that the time they spend taking care of me will at least occasionally be lifted from their shoulders and they can be who they were. They hope others in the family would share in the caregiving. They hope they were richer, smarter, more tolerant, had more time for me and their own families and for themselves. One even told me that they hoped they had the disease instead of me, because they thought I could take better care of them, than they of me.
My point being where does all this hope get us, or anyone when hope comes up against Alzheimer's disease?
From my perspective, observing the people who love me, hope seems a waste of time and energy, squandering today's valuable moments, hoping something will happen tomorrow. Moments are all that I have, they have, and you have.
I have not abandoned hope. I have not stopped hoping. Depression did not drive hope from my thoughts. I consciously decided not to spend time engaged in thought related to hope. I acknowledge I still have a future. I acknowledge I am still responsible for making as much of life as the disease will allow me. But, I can only do it one moment, one day at a time. Each day it is harder for me to remember and understand those moments and days. But, still I am in charge of myself and my world - I see it, as I think about it and as I feel it.
When I first joined a group of people living with the diagnosis of DAT, most of them were further along in the disease process than I. None of them was struggling with the disease, with themselves, or with their carers. They too seemed to have given up hope, and yet seem pleased with their lives. Of course, they did not want the disease. Of course, they had problems in and with their lives. But no one other than yours truly was hoping tomorrow would be better than today. They all seemed to have accepted the inevitability of the disease - I had not. They all seemed to be living with a deeper, inner peace, no one giving up on life and living. But I wanted more, I wanted the past in the present, and the present in the future.
I think I am now closer to their peace than I am to my previous unrest.
What do you think about your situation? Is it a good or bad idea (not to abandon hope) to stop hoping and spend more time and energy living in the present?
Richard
