One evening Francesca left home and never came back. Alzheimer's had chosen an ordinary day, a routine errand she had run a thousand times before—down the street for bread and milk—to strike. It seized her mind and would not release it. That evening in 2000, Francesca could not find her way home. She could not remember it. The family had a doctor among them, and he was the first person Marta—her precious sister, as we will see—turned to for answers about this strange thing that had happened. At first the neurologist told them not to worry. Some time passed before he entrusted Francesca to the care of a colleague; the whole family agreed it would be unwise for a relative to treat her. What followed was the familiar, agonizing path that all Alzheimer's patients and their families walk: diagnosis, experimental therapies to adjust and modify and change, symptoms that never stop surprising, always some new shock. What was rare and tender in Francesca's story was her sister Marta's great love. "Almost every night, in the dead of night, my sister would wake up and get dressed completely—" Marta recalls. "She wanted to go to our mother's house, who had been dead for so long. I had to sleep, what little sleep I got, with my door locked and the shutters closed." For months, in the early stages of her illness, Francesca was fixed on one idea: returning to the house where she was born, just a few hundred meters away as the crow flies from where she lived. Once Marta tried to indulge her, and it was a disaster. They went out, wandered for a long time because Francesca could not grasp the phantom that tormented her, until Marta finally said: that's enough, I'm going home. And she left. Francesca caught up with her and slapped her in public. "No matter what happened, I would never have thought of abandoning her—" Marta says. "And in fact, even after living through what it means to care for someone with Alzheimer's until they die, what I can tell you is that they should stay at home with their own family. Because even at the end, when they no longer speak or move, they feel the love of those around them. They feel it even in the simple squeeze of a hand." Marta and Francesca were unmarried and had always lived together. One sister could care for the other because for five years she erased herself entirely. "I only went out for what was absolutely necessary: Mass and the pharmacy." Even so, devotion alone would not have been enough without two home aides. One came early in the morning and again in early afternoon; the other from late morning through after lunch. In a province in southern Italy, where Marta and Francesca lived, this meant about 300 euros a week, and support from the extended family was enough to cover the costs. Later came a companion allowance—more than two years after the diagnosis—and further help from a physical therapist. Manuela was sent to Francesca's home through the local health service under an agreement with a Matera-based association where she worked. We met with her to hear about her experience. "Our clinical goal is to prevent bedsores and joint stiffness in terminal patients—" Manuela says. "But the greater goal is to give some relief, especially psychological relief, to the families. In doing this, we often run up against the exhaustion and skepticism of those who care for the sick. Unfortunately, in rehabilitating neurological patients, the results are scarce and barely visible." The experience of Francesca's family with physical therapy, however, was positive—especially after two surgical procedures Francesca underwent during her illness: reduction of a femoral fracture and the implantation of a pacemaker.
The two sisters had always attended the same parish. At a certain point in Francesca's illness, when her mind was almost completely clouded, Marta, who is also an extraordinary minister of the Eucharist, asked herself whether she should continue to give the sacrament to her unconscious sister. She decided against it. One might agree or disagree. But for her it was a great pain to give up even this. It embodied in her life and her sister's life the words of Luke 22: "I have eagerly desired to eat this Passover with you before I suffer, for I tell you, I will not eat it again until it finds fulfillment in the kingdom of God."
Vito Giannulo, 2006