Magui, 65, with Alzheimer's: "My man is my boss"

PalmThe testimony of a person with Alzheimer's disease involves a paradox. For it to be trustworthy, it takes two. The person telling the story and the person caring for it nuance, correct, and complete it. Magui is 65 years old. Two years ago, her primary care doctor referred her to a neurologist. "She didn't tell me why I needed these tests, and I didn't ask for it either," she explains. Her mother suffered from "very severe" Alzheimer's disease just two years before dying from a fall. And she has learned that her great-grandmothers also suffered from the disease. "Even with this history, I couldn't even imagine that I could have it," she confesses. At the hospital, the specialist simply handed her a report while continuing to type. "I read: 'Alzheimer's diagnosis' and I couldn't stop crying. When I asked if I could ask him a question, he told me he had a lot of patients. They didn't even say goodbye to us," she recounts. Together with Magui, her husband (71 years old) makes pancakes and confirms this. Xavier is an observant man; he leaves sentences open-ended, demanding ellipses. He, and his intact memory, qualifies, corrects, and completes Magui's story.

She is convinced that she was never worried about suffering from small, everyday lapses. Today it could be a date; tomorrow, a birthday, which had always naturally ended in a congratulation. Xavier does remember: "She was obsessed with the fact that she was losing her memory. I told her that it happens with age and that, from using cell phones so much, we stop learning things, that we no longer do mental exercises, and that she should be calm. But she, with her mother's experience, was obsessed. And, in the end, she converted it." Into Alzheimer's, a progressive brain disorder that slowly destroys memory, thinking, and the ability to complete daily tasks.

"It's the first time I've heard anyone say it. Maybe...", Magui confesses, surprised by Xavier's revelation, and this time it's her, outgoing and talkative, who leaves the sentence with an ellipsis, before adding: "Now I think she's outlived me for two years. Alzheimer's, but with a deterioration that turns people into a patch that they move from one side to the other. Other illnesses are physical, but this one affects the head... Now I've started to have a bit of a tremor," she continues.

'Don't worry, you're young'

With the diagnosis in hand, her family doctor told her three things: "Stay calm, you're very young and no one else progresses the same." It left her with an uncertainty she must live with: not knowing what will happen tomorrow, how the disease, which is degenerative and irreversible, will progress. "You have to go in the dark. I only think about today," reveals Magui, who has agreed to receive an experimental treatment in the hope of slowing the disease's progress. "There's no need to be careful. It's about containing it," she says.

From having "a very normal life" and retirement in three years, Magui found herself at home, with "automatic" sick leave. It was an abrupt end to 42 years of working in a photography studio. With no possibility of return. A court has denied her disability "because she didn't have the necessary points." While she appeals the decision, she has found herself home alone—Xavier still runs her business—"doing Sudoku puzzles and word searches." She doesn't remember how she told her two children about the illness, but she does remember that her husband and I arranged for her to attend therapy at Mente, a private cognitive stimulation center, with therapy that focuses on oral and written exercises related to language and math, complemented by psychomotor skills. "They did it without consulting me, and now I'm delighted," she confesses.

Natàlia Raxach, a psychologist at Mente, confirms that Magui arrived "very reluctant and very polite" and that, after a few months, "she feels part of the group." "Now she's more aware of her situation, but we encounter cases of patients and family members in a phase of denial who tell you: 'I don't know why we're here, if I'm fine,'" she continues. "Magui has the disease and works to stay stimulated. By not staying home watching TV, she prevents it from progressing more quickly. It has nothing to do with the association people make with a completely dependent patient. Awareness is working and promoting early diagnosis. Before, a person could experience memory loss at 67, and it wasn't until 67 that someone who could experience memory loss acted on it. It will be more effective the sooner it starts." In addition to memory loss, some of the telltale symptoms of Alzheimer's include language disorders, disorientation, and mood or personality changes.

Each year, 800 cases of Alzheimer's are diagnosed in the Balearic Islands, according to data from the Son Espases Neurology Department. In total, the disease is estimated to affect between 5,000 and 10,000 people in the islands. The prevalence is between 2.5% and 5% of the population over 65. In Spain, there are more than 800,000 people suffering from the disease.

While waiting for the experimental treatment, Magui takes a pill for Alzheimer's, but Xavier has organized the rest (hypertension and cholesterol, for example) in a systematic pillbox. Strategies to contain the disease have begun. That's why, next to the coffee machine, it's common to find signs that Magui herself leaves the night before. Today's order was "reserve a football table": she had to remember to stop by the bar to be seated the night of the Barça game. And if not, she has a corkboard on which to pin what she shouldn't forget. Faced with Magui's imperturbable optimism, Xavier shyly slips in: "He needs cheat sheets..." And she's happy because he remembered a doctor's appointment on his own. Even the time. He acknowledges it with a repeated smack. Xavier is that shadow, linked to Magui, who suggested putting a joint account holder on the bank account and activating the tracking feature on her phone. "They have me under surveillance at all times!" she admits, quite naturally, now that she walks everywhere. "I didn't feel safe and stopped driving. A year later, with the car stopped, we sold it," she reveals.

Magui has reserved a table at the bar without resorting to the slip of paper, but afterward, she can't remember the names of the clients she's greeted for 40 years or feel that the photos of trips with Xavier to Italy and Portugal last year could have been created by artificial intelligence. "I look at them. I see it's the two of us, in a place I don't know. He tells me it's Naples and me: 'Okay,' but I don't know if I went by plane or by car. I don't remember a thing. I can look at them as many times as I want, but nothing," she explains naturally. "It's no use explaining the trips to him. He saw some gondolas and thought we'd gone to Venice, but it was Portugal. I think the patterns are becoming simpler," Xavier notes, before addressing Magui: "You can have very detailed memories, and others are increasingly simpler..." She looks astonished: "I didn't realize." It's Xavier who talks about the "bad days." "It feels like he's lost, and it takes a while to recover," he explains, referring to the hour-long periods that "need to pass" before he returns to normal. "Do you agree?" he asks, attentively, very delicately. "Yes, probably. Anyone can have a bad day. I live very much in the present. In the here and now. It's not because I set my mind to it. This is how I think I do it well," Magui replies.

Xavier cared for his mother, who suffered from Alzheimer's, and also tries to live day by day. "As things get more complicated, we'll see what support we have. The needs keep growing. We'll have to come up with more strategies. What will happen? If we have two, three, five years to enjoy..." and she leaves, again, a sentence open, before looking tenderly at Magui. "Now he's my head and my walking stick," she says. "And you're mine," he replies, this time with a firm grip on the sentence. "Yeah, man! I'd trade my head for yours. Although I'd probably retire!" Magui replies, laughing.