I learned to communicate with him through skin and through the heart
Más de dos décadas después de que el expresidente catalán Pasqual Maragall eligiera hacer pública su diagnosis de alzhéimer —un gesto de transparencia poco común entre figuras políticas de su talla—, su hija Cristina ofrece testimonio de lo que significa acompañar a alguien en ese viaje. La enfermedad fue despojando a Maragall de su memoria y de su identidad pública, pero su familia descubrió que la conexión humana puede sobrevivir incluso cuando las palabras y el reconocimiento ya no son posibles. En la historia de esta familia late una pregunta que la humanidad lleva siglos formulándose: ¿qué queda de una persona cuando la memoria se desvanece?
- Pasqual Maragall recibió el diagnóstico de alzhéimer cuando acudió al médico por estrés, y decidió anunciarlo públicamente en un momento en que los políticos raramente exponían sus vulnerabilidades.
- Su hija Cristina describe a un hombre que se negó a rendirse ante la enfermedad, resistiendo con obstinación los límites que esta le imponía, como si ceder fuera una derrota inaceptable.
- Con el paso de los años, el deterioro cognitivo fue borrando al hombre que había sido —el líder político, la mente brillante— dejando a su familia ante un extraño que habitaba un cuerpo conocido.
- Cristina y su madre aprendieron a comunicarse con él más allá del lenguaje, a través del tacto y la presencia física, descubriendo una forma de intimidad que no dependía del reconocimiento.
- La familia de Maragall encarna una realidad que millones de familias afrontan en silencio: el alzhéimer no solo afecta a quien lo padece, sino que transforma profundamente a quienes cuidan y acompañan.
Hace más de veinte años, Pasqual Maragall acudió al médico aquejado de estrés. Lo que encontraron los análisis nadie lo esperaba: alzhéimer. Lejos de ocultarlo, el expresidente de la Generalitat de Cataluña optó por hacerlo público, una decisión inusual para un político de su relevancia en aquella época.
Su hija Cristina lo recuerda enfrentando la noticia con una mezcla de rabia y determinación. No era negación exactamente, sino una insistencia terca en seguir siendo él mismo el mayor tiempo posible. Se resistía a abandonar actividades, a aceptar los límites que la enfermedad le exigía.
Los años que siguieron fueron duros. Cristina y su madre se convirtieron en sus compañeras constantes, navegando un terreno que cambiaba bajo sus pies cada día. La memoria de Maragall fue retrocediendo poco a poco, y con ella, el hombre que había sido —el político agudo, la figura pública— parecía alejarse cada vez más.
Sin embargo, en esa erosión ocurrió algo inesperado. Cristina descubrió que perder la memoria no significaba perder el vínculo. Su padre ya no la reconocía, no podía situarla en su historia ni nombrar su relación. Pero cuando ella estaba cerca, algo en él respondía. Había calidez. Había presencia. "Aprendí a comunicarme con él a través de la piel y del corazón", explicaría Cristina.
Lo que más le dolía no era el olvido en sí, sino el contraste entre el hombre que había conocido y lo que quedaba. Y sin embargo, en ese espacio de pérdida encontró una intimidad diferente: una que no dependía de que él recordara quién era ella, sino únicamente de estar juntos. La enfermedad se había llevado mucho. No se lo había llevado todo.
More than twenty years ago, Pasqual Maragall, who had served as president of Catalonia's regional government, walked into a doctor's office complaining of stress. No one suspected what the tests would reveal. He had Alzheimer's disease. Rather than hide behind closed doors, as many prominent figures might have done, Maragall chose to announce his diagnosis publicly—an unusual act of transparency for a politician of his stature at that time.
His daughter Cristina watched her father confront the news with something between anger and determination. He refused to accept the limitations the disease demanded. He would not simply step back from life as others told him he must. "He managed it with defiance," Cristina would later say, describing how her father resisted the idea that certain activities were no longer his to pursue. It was not denial exactly, but a kind of stubborn insistence on remaining himself for as long as possible.
The years that followed were difficult for everyone. Cristina and her mother became his constant companions, learning to navigate a landscape that shifted beneath them day by day. As Maragall's memory deteriorated, the woman he had been—the sharp political mind, the public figure—seemed to recede further away. What remained was a person increasingly unfamiliar with his own life, his own family.
Yet something unexpected happened in that erosion. Cristina discovered that the loss of memory did not mean the loss of connection. Her father no longer recognized who she was. He could not place her in his past or name her relationship to him. But when she was near him, something in him responded. There was warmth. There was presence. "I learned to communicate with him through skin and through the heart," Cristina explained. The words that once defined their relationship had become less important than touch, than proximity, than the simple fact of being together.
What struck Cristina most painfully was not the forgetting itself, but the contrast—the gap between the man her father had been and what remained. She had known him as a brilliant, accomplished person. She had watched him lead. Now she watched him fade. Yet in that fading, she found a different kind of intimacy, one that did not depend on him remembering who she was, only on her presence beside him. The disease had taken much. It had not taken everything.
Notable Quotes
He managed it with defiance—he didn't accept that he had to stop doing certain things— Cristina Maragall, on her father's response to his Alzheimer's diagnosis
I learned to communicate with him through skin and through the heart— Cristina Maragall, describing how she connected with her father as the disease progressed
The Hearth Conversation Another angle on the story
When did you first notice something was wrong with your father?
He was under tremendous stress, and he went to the doctor about it. No one expected what they would find. It was Alzheimer's, but he decided immediately to tell people. He wouldn't hide it.
That must have been shocking—both the diagnosis and his choice to go public.
It was. But that was who he was. He didn't accept limits easily. He fought the disease, refused to believe he had to stop doing things. It was defiance, really.
How did that defiance change things for you and your mother?
We became his anchors. We were with him constantly as he lost more and more. The hardest part wasn't watching him forget—it was seeing the gap between the brilliant man he'd been and what was left.
But you found a way through it.
Yes. Words stopped working. Memory stopped working. But touch didn't. When I was near him, something in him knew me, even if his mind couldn't place me. I learned to reach him through the body, through presence. That became our language.
Do you think his openness about the disease changed anything for others?
I think it mattered that he didn't pretend. He let people see what Alzheimer's actually does. He didn't hide from it, and neither did we.