Piece By Piece

Alzheimer’s disease came into my life in January of 2001, and at the time, it seemed like the lesser of two evils.

“It’s either a brain tumor or Alzheimer’s disease,” the neurologist said, describing what he thought was wrong with my mother.

“Can you get Alzheimer’s in your fifties?” I immediately asked.

The answer was yes. You can get Alzheimer’s disease in your fifties, in your forties, in your thirties. The earliest reported case might have developed in the brain of a 27-year-old. That doesn’t matter. What matters is that it happened to my mother when she was 54 and was a vibrant, young, energetic woman. It happened to my mother when she was in the prime of her life. In an instant, she was old. In an instant, she was sick. In an instant, she was dying.

“She has about three to five years,” the doctor told us.

I used to think it was called Old Timer’s disease, but have come to master the pronunciation of the scientist who discovered this condition. He discovered the more rare form of the disease, the early-onset Alzheimer’s that my mother has lived with for the past four years. In that time, she has lost many of her cognitive abilities, each falling slowly from her consciousness, piece by piece like tiny snowflakes that collect on the barren grass. She stopped driving, stopped cooking, stopped cleaning the house. She forgot how to dress herself, do the laundry, cook dinner. Now she is having problems remembering what to do after she goes to the bathroom. With each change in my mother, my family and I adapt – trying to accommodate for everything she is losing, while working to keep her spirits up, her lips smiling. My father is her caregiver, and so am I, and so are my brothers, and so is her sister. We have formed a circle of love and support around my mother and around ourselves to provide the best care that we can. This is not easy for any of us.

I think of my father who is 62 years old, a dentist who still holds regular hours in his private practice, and of the life that he planned with my mother when they reached this part of their lives. Those plans would have included travel, buying a vacation home in Myrtle Beach, time with friends and grandchildren; not dressing his wife every morning, pulling her sixteen pills from their bottles and then putting them in pudding so that she can swallow them. Not arranging for her to attend an adult daycare center three times a week and then carting her around on the other days so that she does not get bored staying home alone with only the television to entertain her. And then I think of something that he told me shortly after my mother was diagnosed, something that he repeats to me time and time again when we discuss any change in her condition – “Whatever is, is.”

For my family and me, Alzheimer’s disease is what is. It is what now defines my mother and her life. It is what has forever altered our family structure, the way we relate, the way we live. Caring for her is filled with challenges and struggles, sad moments that water my eyes with tears and days that leave me wondering why. Caring for her is also filled with infinite joy, surprising gratitude, and an insight that only individuals in similar situations can share.

She was just a mom to me before she got sick. Not a person, not a friend, not another woman, just a mom. I was comfortable with her in that motherly role, giving advice, baking bread, helping with homework.

Now, Mom is becoming a person for me. I am learning who Paula Kassolis is. And I am learning how much I like her. With Alzheimer’s disease, I cannot expect anything from her. She cannot disappoint me or embarrass me. She is what she is. The more time we have together, the more I appreciate her life and her love and her laugh. Her laugh is the best, a steady chuckle that begins with a roaring “Ah ha” and repeatedly peaks and plateaus, up and down, her hand on her stomach to control the giggles and her face red with delight. Her eyes tear when she laughs and I think crying and laughing might be one and the same because our bodies go through the same motions: short breath, erratic facial expressions, red face, tears.

I cycle through so many phases of coping with her disease. Anger passed quickly, but sadness resonates above my head. And today I realize how much I will miss her, not as a mother, but as a person. And I think I will miss her laugh the most.

Her three to five years are dwindling quickly. It’s been four years since her diagnosis, and now I am just waiting. She is almost living on borrowed time, and I am never sure of when I will become a nameless face she cannot identify. Time is a vacuum to her. It exists and she knows it exists, but it has no meaning. She wears a digital watch and can read the time back to me if I ask.

“Let’s see…eight, four,…seven,” she says. “It’s eight forty-seven. Yep, eight, four, seven.” But ask her what most people are doing at 8:47 in the evening and she won’t know. Ask her what time she wakes up in the morning and she will tell you noon.

Eastern philosophy speaks of time – of breath time, not clock time. We can measure time by the ticks of a clock or we can measure time with the breaths we take to fill our lungs with oxygen. I like to think that Mom is on breath time where the eight, the four, and the seven are just numbers that don’t have to mean anything at all.

A metal plate hangs on her bedroom wall. The copper was intricately cut to emulate both the sun and the moon and painted in a bleed of colors — teal, purple, orange and yellow. The sun’s exterior has twelve rays shapely carved to look like flames of fire. Inside the core sits a crescent moon with a face etched onto its surface. The plate is a sundial, an archaic way of calculating time. The sun and moon, working in tandem, depicted through metal that draws no distinction between when one ends and the other begins.