Shot and Produced by Almudena Toral
Jack Agüeros, 76, is a New York poet with Puerto Rican roots entering the advanced stage of Alzheimer’s disease. One of the first things he lost was the ability to read and write. Jack currently has to be taken care of but still has moments of conscience and lucidity.
Jack Agüeros, 76, a native of East Harlem and a renowned poet within the Puerto Rican diaspora, has now lived with an Alzheimer’s disease diagnosis for six and a half years. Slices of his prolific life –dedicated to poetry, translation of Puerto Rican literature into English, social justice and Latino art curation- disappeared early on. Soon after the diagnosis he was unable to read and write. In the early stages, he went through a period of serious depression. As the disease progressed, his son and daughter also struggled to adapt to the situation, physically and emotionally.
Now entering the advanced stage of the disease, Jack needs to be taken care of and forgets many fundamental things, but mainly keeps a positive spirit. Sometimes he has moments of awareness and lucidity.
Jack is one of the 5.4 million Americans who have Alzheimer’s disease in the U.S. The most common type of dementia, it is incurable and it slowly ravages a person’s ability to remember, communicate and go through life independently. Alzheimer’s is the sixth-leading cause of death across all ages in the United States, according to the National Alzheimer’s Association –and the fifth for those aged 65 and older. Numbers are expected to escalate rapidly in coming years as the baby boom generation ages.
Marcel (M): You’d be surprised at how much memory matters.
My father neither reads nor writes anymore.
Sometimes he remembers that he’s written books
And that he would like to write more.
Natalia (N): Yeah…there’s nothing sadder than a poet without words.
N: I remember when you used to write.
You’d be up all night like a crazy maniac,
writing into the midnight hours,
burning the midnight oil.
Jack (J): I don’t remember any of that
N: you don’t?
J: It’s bumped out of my head
N: Lucia used to be very worried about you
J: who is Lucia?
N: she would come in the morning to come clean the house.
N: And she would find you zoncked out or still, you know, under a pile of books
N: and shed be very worried about you know your well being, staying up all night with those books
J: She was a wonderful lady, huh? She still is
J: you see her at all?
N: yes, now and then. I know you see her every day, over at the house.
J: I don’t see her every day
J: I do?
N: she comes over, she takes care of la niki
J: la Nicaria…
N: Yeah, no, you used to do a lot of writing, papi
J: I should be doing it again. Its good for the heart
N: its good for the heart?
N: what would you write about?
J: who knows, things that may come in my head
N: Would you write about alzheimer’s?
J: No I don’t really know much about alzheimer’s, what is alzheimer’s? Is this disease that affects people?
N: It affects memory
N: It affects memory
J: Memory? So they’ve forgotten what they…
J: oh boy, that’s gruesome.
N: it is gruesome
N: you wrote some beautiful poems
J: see I don’t remember my poems
N: you don’t remember your poems?
N: do you want me to read one to you?
J: yeah, please do!
N: do you remember a book called correspondence between the stonehaulers?
N: yeah, yes you do… Whats the matter papi? What’s the matter?
J: (he cries)
M: We’ve been mourning him 6 or 7 years now, that’s a long time.
I think what alzheimers teaches you is to love a person as they are
not as you remember them,
or as you want them to be,
or maybe as they should be.
But just who they are.
N: And maybe that’s the important thing about alzheimers,
It’s not to think abt outlook,
to think more about the attitude that you have right now.
Because it’s a today kind of disease.
What you have today may be lost tomorrow,
and if you’re too worried thinking about tomorrow
you’re not going to be able to enjoy the song that he remembers today,
the story that he remembers today,
or the surprise that a story that he didn’t remember yesterday
suddenly today is there.
Puerto Rican poetry
Correspondence between the stonehaulers
Museo del Barrio
Sonnets for the Puerto Rican
Jack Agueros & his poetry:
National Alzheimer’s Association:
World Alzheimer report by Alzheimer’s Disease International:
2008 NYT article about Jack and a fundraising event for his Alzheimer’s:
“The voices of Alzheimer’s” series in the NYT:
Alzheimer’s Disease International (based in the UK):
I’ve always felt a profound curiosity towards Alzheimer’s, in the social and identity aspects of it. Are we not made of memory after memory, year after year?
Who do we become if we lose our memory? The fact that the cause of the disease is unknown, the fact that it is so common and that it is non-curable makes it even more disturbing.
So when I heard about Jack Agüeros story I felt really compelled –for the mere fact that he is a poet, and his memories not only live in those whom he met, but also in his verses and books.
One thing I found really interesting (and soothing) in Jack’s case is what his daughter would call “his unconscious happiness.” He is, despite all the ghosts and sensitivities that haunted him in life, and the early stages of the disease, a (mostly) happy person nowadays. Jack sings and smiles all the time and has not lost his natural charm. I saw him, for example, thanking his caregiver every day.