Alzheimer: So Close, So Far Away

Maria is 53—far too young—but Alzheimer's has robbed her of the ability to care for herself or her teenage daughter.
Alzheimer: So Close, So Far Away
Alzheimer: So Far Away and So Close - Shadows and Lights no. 96, 2006
Archival content: this article was published more than 20 years ago. The language and content reflect the sensitivities of the time.
"Good morning, Maria!" Like always, Maria looks at me for a moment, then without answering launches into a story—a story with no beginning, no end, something that clearly agitates her deeply. Maria is 53. She's far too young. But Alzheimer's has made it impossible for her to care for herself or her teenage daughter. I'm Manrica, the occupational therapist—the one who shows up every morning at eight and brings her to our unit, a small room with a simplified kitchen. When you have Alzheimer's, everyday tasks like making coffee become impossible. There's too much to remember. Our occupational therapy room has just two cupboards with pictures attached to show what's inside. My job is to break each task into tiny steps, laid out with diagrams or explained one piece at a time. My work with people who have this terrible disease is simple and complex all at once. When people ask me, "Can they recover?", I say yes—with confidence. But then I struggle to put it into words. For instance, after a couple of months of therapy, Maria recognizes me even though she can't remember my name—which is unusual and complicated, anyway. She knows me because our occupational therapy sessions happen in exactly the same place, at exactly the same time, every single day. That consistency is everything when your memory, your ability to organize yourself, your problem-solving skills have shrunk to almost nothing. I think of Paolo, an electrical engineer, who one day realized he couldn't navigate his own city anymore. He pulled over, asked for help, and used his phone to call his son. What he said was: "Hi, it's Dad. Come pick me up. It's happened—the moment the neurologist warned me about. I can't drive anymore. Maybe I can't even go out alone." In fact, Paolo's life stayed quite active for a good while longer. His family brought in specialists and learned how to simplify things for him—to keep him independent as long as possible. By the time I met the family, the first stage was already behind us. We were deep in what they call the second phase: when memory declines, especially short-term memory, and the personality shifts dramatically. Attention, judgment, problem-solving—all of it falls away fast. Work becomes impossible. Family members notice he withdraws from events, hesitates to make decisions, refuses to choose. Everything Paolo cared about seemed to collapse inward, toward himself and his own struggles—which he tried to minimize. He could tolerate frustration less and less. His emotional life was deteriorating. He slipped into depression, then into anxiety with irritability and mood swings, sometimes even violent outbursts. I started by assessing what Paolo could still do—his remaining abilities. Based on what I observed, I helped Paolo and his family focus on what he was still capable of. For example, Paolo had always shaved himself every morning. But that was becoming impossible. Even the electric razor didn't help because it lived in a drawer. We moved it to the shelf above the sink, and every morning when Paolo saw it, he remembered to shave. The point is this: yes, eventually he wouldn't be able to use that razor. But good occupational therapy planning means Paolo could still feed himself, cooperate with getting dressed, manage his own hygiene right up until near the end. The agitation, the anger, the anxiety—all of it diminished. A home aide helped him get out, which let us keep him physically active too. Then came the third phase, inevitably—the general decline. Paolo's family chose to care for him at home. It wasn't easy, but they had the resources: a full-time caregiver just for him, regular visits from the neurologist and geriatrician, a nurse to manage his clinical care, and an occupational therapist for rehabilitation. That work means choosing the right assistive devices, making hygiene and dressing easier, picking the right wheelchair so Paolo could still enjoy his walks. Now I work in a residential care facility. Rehabilitation there means something different: it means guiding our residents through the progression of this disease as gently as possible—through physiotherapy for the body, and occupational therapy for the mind, the self, the ability to sit and exist with dignity. Manrica Baldini, 2006

Occupational Therapist at the San Raffaele Residential Care Facility, Trevignano Romano

Manrica Baldini

Manrica Baldini

Author of articles published in Ombre e Luci.

In total 349 authors have contributed to Ombre e Luci.

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