We found the paper with Mom’s scribbled writing. She had been trying one last time, I imagine, to write something intelligible. But she couldn’t even get through the first sentence.
It must be excruciating to realize you have Alzheimer’s disease.
Think about what it takes to cook a big meal for seven people each night. Timing is everything. The pot roast, turkey or ham has to be in the oven the right amount of time. The vegetables need to be done at the same moment. In families like ours back then, people were ready to sit down to eat precisely at 6 o’clock. Any later, and we’d start to wonder, “Where’s dinner? What’s wrong?”
For decades, Mom gave us the grandest meals she could, while staying within her budget. She never took shortcuts. She baked a cake practically every day, giving us each a slice for dessert after supper, then another for a bedtime snack. That’s the kind of mom she was.
So when you lose the ability to do all this—to perfectly prepare and time an elaborate meal each evening—you know you’re losing something vital, something of yourself. When Mom began to show symptoms of Alzheimer’s, that’s exactly what happened. She couldn’t prepare a meal anymore—because, to her distress, she just couldn’t tell time.
“Your mom’s not what she was,” Dad said to me one day.
That was how it began for our family—the decade-long decline that went pretty much by the book. Mom was behaving in ways that followed the usual course for someone with the disease.
“Classic,” Dad would say, having read up on the clinical descriptions of Alzheimer’s. It’s good that he did, otherwise he might have taken it personally when Mom, in her confusion, blamed him. He knew it was the disease. He knew he was sharing the experience of Alzheimer caregivers everywhere.
“Classic.” That was his way of coping. If you asked him how Mom was doing, that would be his answer every time.
My mother had always been a fighter. She fought to get us everything: the best schools, piano lessons, a house at the shore in summer, college, everything. Our hopes were her pride.
“With each passing visit, children return home to see their parent changed. And the changes are so great, they can forget the parent they once knew so well.”
But by the time all our hopes and dreams had come true and she could have enjoyed the success of her kids, she had lost even the ability to tell time.
Alzheimer’s is indeed the long goodbye. With each passing visit, children return home to see their parent changed. And the changes are so great, they can forget the parent they once knew so well. Old memories can get wiped away in the presence of one who has no memory. As the warmth and joy of the past recedes and fades, the tragedy looms and grows. Only by reading the hopeful, caring letters she wrote to me in college and later in the Peace Corps, can I still find the Mom I remember.
When our mother died, all of us were too devastated to speak—all but my brother, Bruce. He gathered himself, stood up and went to the altar on behalf of his brothers and Dad to speak for Mom.
With a strong voice overpowering his emotion, he said, “Mom would speak for us.”
Today, I know we all need to speak out. We need to do all we can to end this disease. Mom would have done it for us.