The New Dark Age

1 July 2011 — NYTimes.com

[Preamble: I worked with Jack for six years designing and building the first Hispanic museum in the USA, El Museo del Barrio and I was heartbroken when I met up with him in 2008 in NYC to discover that he had Alzheimer’s. Please do visit the Website his son Marcel has set up: http://www.jackagueros.com/ WB.]

The memory of the New York poet Jack Agüeros is capricious nowadays. He remembers the lyrics of certain Puerto Rican folk songs and the name of his petite, growling dog: Nikki. He does not remember collecting the old radios, locks and cast-iron pieces that once decorated his bright Manhattan apartment on West 14th Street.

Mr. Agüeros, 76, a community advocate who directed El Museo del Barrio for almost a decade starting in the mid-’70s, has also forgotten that he is the author of four books and a handful of plays. He wrote sonnets and satiric psalms about immigration, poverty and social inequality. He also compiled and translated the complete poems of the renowned
Puerto Rican writer Julia de Burgos.

‘I don’t remember any of that,’ Mr. Agüeros admitted to his daughter on a recent Sunday morning.

Mr. Agüeros was found to have Alzheimer’s disease six and a half years ago. After the diagnosis, according to his daughter, Natalia Agüeros, 31, he felt useless and frequently wondered if life was worth living. Later, he was medicated for depression.

He kept an irregular diary — ‘the Alzheimer’s chronicle’ — but over time lost the ability to read and write.

‘I think the heartbreak is that when he does sense the loss, he senses it strongly and he expresses it,’ his son Marcel, 38, said. ‘It’s hard for us because we are also witnesses to the loss in a way he isn’t.’

As the disease progresses, so do the elder Agüeros’s moments of confusion.

But unlike many Alzheimer’s patients, Mr. Agüeros has so far been spared the bouts of aggression or nonresponsiveness that can accompany the disease. He sings constantly. He cracks jokes. He chats with enthusiasm with whoever is around. His awareness seems gently to come and go, like a car radio tuning in and out of a faraway station.

‘What is Alzheimer’s?’ he asked his daughter recently in a lucid conversation about how he missed writing. ‘This is a disease of the people?’

‘Yeah,’ Natalia said. ‘It affects memory.’

‘It affects memory. Memory, so they come out and they’ve forgotten what they. …’ His words became a mumble.

‘Mm-hmm,’ Natalia nodded.

‘Oh, boy,’ Mr. Agüeros said. ‘That’s gruesome.’