Tuesday, January 08, 2013

The Truth Will Set You Free

January is Alzheimer Awareness Month and this is a disease that is of particular, personal importance to me. So my column in tomorrow's paper became an outpouring of thoughts and emotions regarding the stigma attached to Alzheimer, how deep our fear of this disease runs, and how that fear, and our ignorance about the disease, keeps those afflicted from being treated as kindly and as humanly as they deserve.
It's a heavier column than I often write because it's such an emotional topic for me. I speak from experience, as someone who helped take care of her father while he was at home and then, every day, when he was in the nursing home, and finally, was there for the ten days when he was in the palliative stage and dying.
All of that changed me profoundly.
I used to think, "People must get sick of me talking about Alzheimer disease all the time, about my time spent taking care of my father," but now it doesn't matter. My job now is to be the squeaky wheel, to make sure my fear and ignorance and what my father's suffering ended up teaching me are shared. It is important for me to speak out, to be heard, to say on behalf of my father: People with Alzheimer disease deserve to be treated better than they are. When I remember how few people came to visit my father , I realize how much education needs to be provided on the affects of this disease.
But let me also add what gives me hope: the devotion of my mother to her husband, and the three long-time friends of my father's who insisted on taking him for coffee and to Rotary Club then continued to visit with him in the nursing home. No matter how disconnected he may have seemed, I know my father was aware of who was visiting.
And also why.
Here is the one-and-only bottom-line truth that everyone needs to know about this disease. From this place, all our fear and ignorance can be banished: Regardless of the memory loss and the changes in ability and behaviour, the person still exists. Even if it's buried deep under the plaques and tangles taking over the brain, that person is still there. If we care for each person living with Alzheimer disease from that place of acceptance and love, we will care for them better.

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