"Kids, Grandma has Alzheimer's disease." That announcement, late in the 1980s, brought my whole family face to face with an illness we had no name for, only fear. I chose the word "Alzheimer's" deliberately—it felt sharp, a jolt—but I preferred it to the alternative: "senile dementia," which I thought would terrify my two teenagers, fourteen and fifteen, who had spent their childhoods with a grandmother who gave them her undivided time after she had given it all to me, her only child.
I still don't know whether living long beside someone makes it easier or harder to notice when they change. I never found out. I lived with my mother—a widow since twenty-three—through every stage of my own life. After I married, she stayed with us, sharing our home, our friends, our vacations. She cooked for all of us. She walked the children to school. She cared for our dogs and cats. I should have known her completely. And yet her illness crept into our daily lives quietly, without drama or sudden collapse. At first, there was no certain diagnosis at all. The symptoms were light: a forgotten name here, a recent event gone there—small lapses we laughed off. Everything seemed normal. I should have noticed sooner. That's what I told myself when, during a routine checkup in the geriatric ward of a hospital in my city, a doctor suggested my mother might benefit from an experimental support program for early-stage senile dementia. That was when that dreadful word—"dementia"—finally had a name. Alzheimer's.
My mother was still independent then. She spent whole days alone at home managing the household. There was such normalcy about it all, apart from a few gaps in memory we dismissed as natural ("Who doesn't have them by seventy?") that it seemed absurd to accept that "senile dementia of the Alzheimer type" had seized hold of her. Yet the slow unraveling of her cognitive abilities, her memory, her speech had already begun—irreversibly. The behavioral recovery center where I took her three mornings a week showed no improvement. Neither did home. The real collapse came one afternoon when she was in the garden. She tripped—or perhaps had a moment of dizziness—and fell, fracturing her humerus. Emergency surgery followed, done under general anesthesia, and technically it went well. Surgically perfect. But neurologically, everything fell apart. After the operation, her condition deteriorated rapidly. The memory loss deepened. Past and present tangled in her mind. Words broke apart on her lips until we couldn't understand her, and this drove her to rage, to violence—she who had always been gentle, sweet, easygoing.
After that came escape attempts without number. Faucets left running. Gas valves open. The dog's food in the refrigerator, mistaken for something to eat. Salt for sugar and back again—the classic confusion. Complete incontinence, and refusal, fought with kicks and fists, to accept help with daily toileting. Objects vanished, real or imagined. She couldn't coordinate her movements to dress herself or walk. Her moods swung violently. Then came the isolation, the silence, the apathy, the loss of words—except sometimes a single phrase repeated obsessively for hours while she paced the house with the door locked, like an animal in a cage. And finally, the cruelest moment: the emptiness in her eyes. She no longer knew us. A wall of madness between us. That was when I felt it—a tearing, a sharp break. My mother was gone. Her absence was absolute. Everything she hadn't yet told me, she never would. All the advice, the affection, the complicity, the tenderness she might have shared—it was lost. What could we do? What could anyone do?
Somehow, the long, painful unfolding of this illness threaded itself into the ordinary rhythms of our days: work, friendships, small collisions with life, the useful banalities of grocery shopping, dry cleaning, bills, the children's school. But our life had changed completely. She could never be left alone. We were all working. So we created shifts. From seven in the morning until two in the afternoon, someone from outside the family stayed with her. At two, usually I arrived, or one of the kids—as we joked, "under house arrest"—until evening. My husband took Saturday or Sunday shifts when he could. It was during those three years that I understood what a neurologist had said at a seminar for families in the pilot behavioral recovery program, years before. Three lectures on the disease, its probable causes (never certain), the types of brain damage, the consequences, how to relate to the patient. Slides, charts, all of it. And at the end, when we asked our anguished question—"So what do we do?"—his parting words were: "You must learn to live with madness."
No one can truly teach you how to live with madness when it takes hold of someone you love, when it transforms them into a stranger. Only affection can—participation, the heart itself. But also reason, a cool clarity in making decisions. Panic, despair, anger, self-pity—these are human. They change nothing. There comes a moment in this illness when you realize that family alone cannot help, that you yourself are becoming sick from it, worn down, helpless, almost a source of harm. Then you must consider the possibility of placement in a facility with proper equipment and trained staff, where the patient finds safety and care, and the family finds some peace. "Consider the possibility" is not the same as "decide." Deciding means acting quickly, with certainty, with faith in your choice. But when you must separate from someone you've lived beside your whole life, it feels like amputation. You doubt whether it's necessary, whether it can wait, whether it's selfish. You live it as a tragedy.
At some point in my mother's illness, we did decide. First as a possibility. Then as a plan. Finally, we placed her name on the waiting list at a nursing home not far from us, recommended by the hospital and selected only after my husband and I had visited many others in person. The wait was long—about a year, they said. Strangely, this gave us comfort. My mother would stay with us at least another year, even though we had reached the point of total chaos: no activities, no response to anything, no sign of affection. Only emptiness, silence, the impossibility of managing daily life, especially toileting—with her double incontinence, it became a painful wrestling match, unbearable for us both. But there was still a year. Separation was still just a possibility. That possibility became certainty twenty days later with a phone call. They had a place. Given the severity of her condition, they said, she was already on the list. Would we come right away?
I cannot describe what went through my mind in that moment. I remember only the twenty kilometers to home, sobbing desperately in the car, crushed by sorrow but most of all by a creeping, suffocating guilt. I was a bad daughter. I was selfish, ungrateful, incapable of real compassion. I begged God to forgive me for these sins.
Now, two years after my mother's death and ten after that phone call, I am kinder to myself. I have, in some measure, forgiven myself. When she was with us, she was cared for not only by me but by an understanding son-in-law and two loving grandchildren. In the facility, she received care and humanity. I was able to be with her almost every day, even though she no longer knew me. I celebrated her birthdays and name days with her. I fed her, wheeled her onto the terrace on sunny days. When I wasn't there, my sons or my husband were. I held her hand through the night before the illness, which had left her nearly motionless, released her with a gentle tremor into the arms of the Father.
Alzheimer's had made her a slave. Death set her free. And I am grateful to her for letting me share even this final part of her life.
Mara Martelli, 2006
