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ALzheimer's: Black and White
posted Sunday, 12 April 2009
Last week (April 12 today), my mother was 85 years old. Mom has late-stage Alzheimer’s. She can’t understand or speak; she is completely incontinent; she needs to be hand-fed. Yesterday, I was in a bookstore, flipping through a book on weddings and came across a mothers ceremony. My eyes filled with tears and the grief just poured out of me in gasping gulps. People were all around me – I could not howl out my feelings, so I shoved them back into the box that I did not even know I was carrying around. Today, at church, on Easter Sunday, the minister was talking about how we respond to bad things and I was overcome again. Once again, public place, can’t cry, but I let the tears slide down my face nonetheless. When the time for spoken Joys and Concerns to be shared, I stood up. Without any notion what I wanted to say, I took the mike and the words found their way. “Last week, “I told them, “my mother was 85 years old. She is in the late stages of Alzheimer’s. I feel great joy for the woman I have known. A peace activist for a half-century, who met Archbishop Tutu, walked all the way around the world in 1995, had a Christmas in Sarajevo, supporting the peacemakers there. She was a wonderful mother, not just to the two children she bore, but the four she adopted as well. All I feel is joy when I think of her life. All I feel is sadness when I think of what this disease has done to her.
“And I know why I had a certainty that I had to wear this white scarf with this black dress. In the faith-culture in my heart, white is the color of funerals and black is the color of sincerity, commitment and purpose. When I dressed this morning, I created my mother.” I thought that I had cried myself dry when I first realized what was wrong with her. I thought I had cried myself dry every time I visited her during the early and middle stages of this disease. Now I am living far away and my sister is visiting her in her very high-quality dementia facility, and I thought that I had cried myself out. I was wrong. Mother’s Day is coming around again next month and I will cry again as I do every year. I will cry for the future wedding that she will not see. I remind myself that she did a lot of the arrangements for my first wedding and proudly walked me down the aisle, and I smile, am glad and pull out the photo albums to admire her lovely complexion and smile. I cry for the new son-in-law that she will never meet. I cry for the adventures I cannot relate to her. I cry for the wise crone insights that she tried to explain to me, decades before I could understand them. I wish I could tell her: “Mama, I understand it now. Thank you.” I cry because in 1970, she told me that someday Nelson Mandela would be President of a color-integrated South Africa, and I laughed. I cry because I don’t want my mother to be gone in this terrible way. I cry because this dynamic caring crusader should have died in bed of old age, or from something like cancer, diabetes or heart disease. To destroy her mind and her humanity is too cruel. I cry because of all the well-intentioned “research” telling us that we can dodge this hideous bullet if we just eat vegetables, exercise and do crosswords. My mother walked 3 miles a day until she lost her neurons, always ate healthy and started every day with crosswords – just before she sped off to start her rabble-rousing and getting-arrested for the day. My mom, and aunt, and grandmother, were felled by an aberrant gene that they could do nothing about. I want some real research to come up with a cure for the motor proteins in my sister’s brain, and thank every god ever born that I am one of the adopted ones. For me, maybe the vegetables, the exercise and the crosswords will really work. I doubt it. [Vegetables and exercise will help prevent vascular dementia, not Alzheimer’s; it’s more likely that people who are affected by early dementia stay away from mentally taxing tasks like crosswords, than that doing the crosswords prevents dementia.]
“And I know why I had a certainty that I had to wear this white scarf with this black dress. In the faith-culture in my heart, white is the color of funerals and black is the color of sincerity, commitment and purpose. When I dressed this morning, I created my mother.” I thought that I had cried myself dry when I first realized what was wrong with her. I thought I had cried myself dry every time I visited her during the early and middle stages of this disease. Now I am living far away and my sister is visiting her in her very high-quality dementia facility, and I thought that I had cried myself out. I was wrong. Mother’s Day is coming around again next month and I will cry again as I do every year. I will cry for the future wedding that she will not see. I remind myself that she did a lot of the arrangements for my first wedding and proudly walked me down the aisle, and I smile, am glad and pull out the photo albums to admire her lovely complexion and smile. I cry for the new son-in-law that she will never meet. I cry for the adventures I cannot relate to her. I cry for the wise crone insights that she tried to explain to me, decades before I could understand them. I wish I could tell her: “Mama, I understand it now. Thank you.” I cry because in 1970, she told me that someday Nelson Mandela would be President of a color-integrated South Africa, and I laughed. I cry because I don’t want my mother to be gone in this terrible way. I cry because this dynamic caring crusader should have died in bed of old age, or from something like cancer, diabetes or heart disease. To destroy her mind and her humanity is too cruel. I cry because of all the well-intentioned “research” telling us that we can dodge this hideous bullet if we just eat vegetables, exercise and do crosswords. My mother walked 3 miles a day until she lost her neurons, always ate healthy and started every day with crosswords – just before she sped off to start her rabble-rousing and getting-arrested for the day. My mom, and aunt, and grandmother, were felled by an aberrant gene that they could do nothing about. I want some real research to come up with a cure for the motor proteins in my sister’s brain, and thank every god ever born that I am one of the adopted ones. For me, maybe the vegetables, the exercise and the crosswords will really work. I doubt it. [Vegetables and exercise will help prevent vascular dementia, not Alzheimer’s; it’s more likely that people who are affected by early dementia stay away from mentally taxing tasks like crosswords, than that doing the crosswords prevents dementia.]
In between the tears, I will celebrate her life. I feel my half-completed book stirring back to life. However poor the quality (and I have been told that my books are better written than I give myself credit for), she deserves for me to try. And so I will.
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