Caring for Mother

Published on 19/10/2020

On Friday nights, 41-year-old J.P. García goes dancing. From a working-class suburb of Madrid, Spain, he takes the Metro downtown where a friend deejays. “I escape by dancing,” he says. It is a precious getaway. J.P. García spends most of his waking hours caring for his 81-year-old mother, Antonina Hernández, who suffers from Alzheimer’s disease.

J.P. García, a fitness trainer, first noticed her decline four years ago. Every day on the phone she described eating identical meals. He checked her refrigerator and it was nearly empty. He saw that she was losing track of time and forgetting to eat. A neurologist soon diagnosed Alzheimer’s, a disease Antonina Hernández shares with an estimated 44 million others around the world.

In the early days, she could manage on her own, with steady prompts and visits from J.P. García, who lived next door. But two years ago, he saw that she needed help with the most basic tasks and so he moved into her two-bedroom apartment. He dropped most of the clients in his fitness classes and became a full-time caregiver, an activity he shares with a growing number of people worldwide. In the United States alone, according to a 2012 report by the Alzheimer’s Association, there are about 15 million family caregivers who are supporting one of their relatives suffering from Alzheimer’s or another form of dementia.

Like many other family caregivers, J.P. García relentlessly consults the internet for advice. The most important point, he says, is to build routines for his mother, to keep her engaged.

“If I’m cooking, I have her peel the vegetables, and when I wash the dishes, she dries them,” he says. “It takes much more time than it would to do it myself.” But the activities keep her busy and distract her from the growing gaps in her memory, which can produce frustration, anger and despair.

He creates daily worksheets for her, and has her circle words or draw a wavering line through a maze. He also leads her in exercises. She mirrors her son’s movements, lifting small pink weights in each hand.

Antonina Hernández is vaguely aware of her situation. She struggles to remember basic words and is aware and embarrassed that she forgets so much. She often hallucinates, returning in her mind to the farm where she grew up in the tiny town of Villatoro, northwest of Madrid. She worries if the chickens are fed, and even on sweltering summer days, she bundles up for the cold mountain nights of her childhood.

Like so many other caregivers, J.P. García feels terribly alone and vulnerable. “The worst part is the stress,” he says. He frets that his mother will slip out of the house when he is not looking and get lost or suffer an accident. “You’re on alert 24 hours a day,” he says.

The impact of this disease on people and society will likely increase, unless research now underway at Novartis and elsewhere yields a breakthrough in treatment options.

As the world’s population ages, Alzheimer’s cases are projected to grow rapidly, reaching 65 million by 2030. This will require more caregivers, who may face increasing stress and their own medical problems. Some 40 percent of caregivers, according to the Alzheimer’s Association, report suffering from depression. And there are financial concerns, as many of them forfeit paying jobs to care for loved ones. Indeed, this is one of J.P. García’s challenges. He scrapes together enough money to send his mother for a few hours every week to a therapeutic center run by the city. That frees him up to give a few fitness classes. He also makes some money by selling comic books on eBay. But for now, his full-time job is taking care of his mother. She stands by the sink with a dish towel in her hands and a far-away expression in her eyes. She is waiting for something, and it is up to him to give her tomatoes to wash or bowls to dry.