Mourning my mother

My mother died of Alzheimer’s about ten months before my wife Jane died of NET cancer in 2010. When my mother died Jane had already begun the steep decline that would lead to her death and there was little time for me to mourn her passing.

I am in a horrible and lonely race…

And Jane’s death has so overwhelmed me that I have allowed it to obscure my mother’s death and the grief I should feel about it. The truth is, I try not to think about my mother’s death because Alzheimer’s terrifies me–and I saw just enough of how it destroyed my mother to be far more frightened of it than of death itself.

Alzheimer’s beginnings

My mother loved to read, she was a powerful writer, and a woman who enjoyed creating art, whether on stage or on canvas. She kept the checkbook balanced and enjoyed playing with numbers in all their forms. She was a fan of cooking shows because they gave her new recipes to try to new foods to experiment with. There was nothing passive about her—any more than there was anything passive about Jane.

I can imagine no greater torture…

She began her battle with Alzheimer’s in her early 60s—only a year or two older than I am now. Jane noticed something was off about her during my parent’s first visit to our new house, but my father managed to keep us all in the dark until my youngest brother got him drunk enough one night to confess what was going on with mom. Even then, my father worked to keep her at home—until she pulled a knife on him.

Alzheimer’s power

The last time I saw my mother she still knew who I was. My parents had come out to visit my aunt and uncle in New Castle, PA and Jane and I drove down there to visit. But much of the woman I knew had already disappeared. She’d lost her understanding of numbers by then—and with it a substantial chunk of her independence. Cooking requires numbers—as does handling any kind of money. Her patience with anything was long gone.

I understand genetics well enough…

The written word was also beginning to slip away. She no longer wrote and reading was becoming increasingly difficult. Eventually, it all became squiggles on a page—and finally, not even that.

The long knowledge

When he finally was convinced he could no longer take care of her, my father searched out the best Alzheimer’s facility he could find. He visited her virtually every day—except for the periods he was hospitalized because of his kidneys and heart by-pass surgery. People comment sometimes on how much I loved Jane and how well I took care of her. Compared to my father’s treatment of my mother in her last days, I am a miserable failure.

…she knew precisely what was happening to her.

My mother’s battle with the disease was so long and so drawn out that she knew precisely what was happening to her. I can’t imagine not being able to understand numbers—to watch my ability to add, subtract, multiply and divide slowly slip away—and knowing those vital skills were vanishing before my knowing eyes.

The written word

And I expect that it was far worse to lose the power to write and the power to read—and to know those things were going away every bit as inexorably as the numbers had.

Eventually, it all became squiggles on a page…

I don’t want to deal with my mother’s death because it is more than likely my own. I understand genetics well enough to know there is a good chance I carry the same genes that sparked her Alzheimer’s. I know she did crosswords and jigsaw puzzles and number puzzles—all the things that are supposed to hold that nastiness at bay. But it destroyed her, just as it did one of her sisters and one—or more—of my great aunts.

My Alzheimer’s terror

There are a handful of things I am good at: I can analyze, I can think logically, I can learn, I can write, I can speak, I can teach. Those are the tools I have built my life with. Take them away and I can do nothing. Take them away and I am nothing. And the cruelty of Alzheimer’s is that you have to knowingly watch them disappearing—fully aware for years what is happening and completely unable to stop it from happening. I can imagine no greater torture for someone like my mother—for someone like me.

There was nothing passive about her…

I remember visiting my grandparents back in the mid-1970s. They had a next-door neighbor who had lost his wife some years before. He had recently developed full-blown Alzheimer’s but continued to live alone in the house he and his wife had shared. I remember his plaintive howls in the night that no one could comfort. And I worry those will be my howls.

My personal race

There is increasing terror in that memory just as there is increasing terror in the thought of my mother’s death. I am in a horrible and lonely race: will my mind stay powerful enough long enough to help find the answer to the NET cancer that killed my wife—or at least to put together something capable of doing that after I am gone?

My mother died of Alzheimer’s…

I have no answer to that—only the certainty that I have to keep running the race for as long as my body and mind will let me.