This project is an invitation to break the taboo. An inspiration and information channel for the ones who go through the grieving process and the ones who want to help

There’s a time we are soaking wet and we give up running under the rain

We are talking about daily goodbyes, small deaths and farewells. This way, the journalist and writer, Jorge Tarquini, describes his journey with his father, a victim of Parkinson's and Alzheimer's, for the eight years he lived with these degenerative diseases. In this opened and brave testimony he speaks of pain, love, funny moments but also of the guilt that society imposes on families who have their rights to continue to live, laugh and be happy, denied

Insensitive“, “Selfish.” “They should be thanking God he died.” I could read it in the eyes of some relatives and friends. I do not blame them. My father, there, dead, and the family (meaning my mother, my sisters and nieces and my brother in law), despite the sadness, felt something close to a certain relief. Eight years have passed from the diagnosis of Parkinson, to the effects of drugs and Alzheimer. Eight years of daily goodbyes. Small deaths. Small farewells. Small pains. Even this was stolen from us with these diseases: the great suffering of loss. My father died every day: with each lost memory, and each impossible movement. And our grieving was also like this: daily, slow, cruel as a torturing tap that drips all the time … In the eyes of “others” it was a crime to show some joy and, as my father always liked, we still received our friends, gave parties. What “others” have never understood – nor need to understand – is that the daily sadness creates an individual way each one of us to deal with that “homeopathic” grieving. I confess: I have also come to think, before my father, about what would be like to have an incurable disease and to live with it.

Jorge with his father , Roberto and the mother , Dirce
Jorge with his father , Roberto and the mother , Dirce

To my surprise (and experience), survival depends on maintaining some degree of normality in the middle of the storm. There comes a time that we are so wet, we give up running under the rain. But the uncomfort, the cold, the weakness and fear of rain are still there: you just understand that it is a fact. And you must keep it light in order to face all this – no one can face the dismay that we can only stand for one or two hours. We want to find some normality in the middle of all that forgetfulness, that lack of coordination, real conversations. And we were very lucky: we learned, even in suffering, to laugh. Like the day that in the baptism of a friend’s son, him and me sat side by side with my mother between us, my father looked at me and laughed. I laughed back. It was like this three or four times. – You’re so silly … – he said, out of nowhere, bursting into a laugh that we no longer heard.

It was a moment of redemption. The rest of the family heard and laughed. Or when, in our last family trip, we spent a week in a ranch in Cantareira. As we loaded the cars, he was siting on the porch, staring at me as if I was an enemy. Is it all set… – Let’s go? – I will just get out of here when you pay me the 40 million you owe me. I – 40 million??? – Okay dad, I will refund your money. I pick up the phone, pretend to call the bank, make the money transfer. – Ready! – Do you think I’m stupid? The mess was huge … My mother and the rest of the family confirmed the transfer and he didn’t believe it. – Call Cesar I want to talk to him! It was my brother who worked at the bank where my father had an account and should, promptly, confirm the “transfer”. As he lived daily with these situations, we had no trouble to confirm the “transaction”. And there were so many: I’ve been a lover of my mother (“are you bringing men to our house?”), my sister became the maid (“will She sleep here”) and the painter became our lender. But I can not laugh at everything … It was exhausting when despair hit to “go to my house” or wake up in the middle of the night to “go to work” – or attempts to escape and the one that worked – and he was gone for 10 minutes until he was found. There were moments when he regained the memory somehow. But recovering the memory could be the worst punishment for him and for all of us. A contradiction, I know. But that’s how I remember those increasingly rare moments. And I felt ashamed of myself; I hoped that they would get increasingly rare. For him. And for all of us. One day at the beach house, he, my niece and I were sitting by the pool with him, playing and swinging our legs in the water. – Do you forgive me? He said in a weeping voice. – Forgive what? – I swear I did not want to be like this … These flashes of consciousness did not last more than seconds. But they were times when the suffering of grieving came up harder. That’s why, when my father finally died, most of him was already dead or had died long ago. I do not need to defend my family, or myself but we didn’t feel relief (as much as I think it would be fair to him and my mother and to all of us, after eight years). Anyway, I can’t talk about death and what it was… More than sadness, what we felt was a huge nostalgia, a huge idealized nostalgia for all that he could have been as a father, brother, husband, grandfather and friend in those eight years or more and he wasn’t.