Conversation with Emanuela Castelli from Italy

Kasia - Alberto, your brother, died at the beginning of the pandemic. Due to the worsening situation in Italy, you had a chance to spend a lot of time with him at the end of his life. What do you remember the most from that period and how did it feel to accompany Alberto throughout his last weeks?

Emanuela - For me, being with him was very special, precious and important. In any other situation, I couldn’t have been there with him because I would have never left my children and my husband for such a long period of time. That month and a half that I spent in Genova with him, however foolish it may sound, was very beautiful to me. I have incredible memories from that period and I recall every moment of that month and a half with so much love and warmth.

I lived with my brother in his house for all that time together with his childhood friend Veronica. When Alberto was sleeping during the day, because he was under morphine, I had time to visit my parents’ house and talk to my mom, dad and aunt. They are all in their 80s. The rest of the time, I was with my brother cooking and talking to him. I had a really lovely time with him. He was such a good man. We laughed a lot. For example, when I was preparing a morphine injection for him, he played the music from Pulp Fiction, from the scene in which they were taking drugs. We were laughing like crazy.

Every evening, although it was not allowed due to some restrictions, a couple of his friends came over and we had dinner together. Also, my sister Federica, who lived in a flat above Alberto, often came to help with physiotherapy and she was always with us. The house was full of people and it was extremely important for Alberto to have them over.

Being with him was an incredible gift. I was calm because I knew that my children did not have to go to school and my husband could be with them because he was working from home. Thanks to that, I could focus fully on being in Genova, with Alberto and my elderly parents.

I feel bad and sad sometimes, because I know that during that period so many people in Italy died alone due to COVID-19 and at the same time, I had an opportunity to be with my brother.

Kasia - You said that you laughed a lot during that time. Did you also have a chance to ask Alberto whether he was aware that he was dying?

Emanuela- It's the question I ask myself almost every day. I think when you are near to death, you know it but something in your mind tries to tell you it's not true.

For example, he was so afraid of COVID-19 that he ordered some facemasks for us and in that period they could not be found anywhere. He was saying to me ‘Please wash your hands before you come here and be careful because I have to do more immunotherapy treatment when I get better’. So I really don’t know whether he knew he was dying but I assume he was.

Emanuela - So you didn't have a conversation about it?

Manu - My brother always in his life was very hermetic. It was hard to talk to him about his personal life and he never asked me anything about mine. Every day, most of all during the last weeks, I was asking myself ‘Do I have to tell him?’ but I think that if you really want to know and if you are ready to know you just ask. If you don’t want to face the truth, you don’t ask. This was the explanation I was giving myself.

On various occasions I told him: ‘You know I am here for whatever you need’. For me it was clear that I wanted to say that I was strong enough if he wanted to ask me anything. He was always responding that he knew that. That’s it.

Kasia - But he never brought it up.

Emanuela - No. There were moments in which he looked at me seriously and asked: ‘Why am I getting worse?’. I was always responding: ‘You are not undergoing immunotherapy treatment at the moment and you are full of morphine so obviously you are not getting better. We have to be patient because the pandemic has stopped many services and now you are eating better’.

When they told me that there was nothing more to be offered to him, it had already been a month since he was not eating anything because of the medicines he was taking. When they changed his medicine regime to the intravenous one, his appetite improved so much. Everyday he had a different craving. To see a person who ate so willingly was very pleasant. So during the last month and a half in reality he felt better than during the month before in which he was not eating.

Kasia - You are a mother of two teenagers and you also have elderly parents who have been deeply affected by your brother’s death. How was it for you to manage and observe their emotions?

Emanuela - I couldn’t say anything to my children while I was with Alberto. They knew that their uncle was very ill and I had to stay with him till he got better. We had a video call with them everyday but I didn’t want them to cry looking at him.

It was very difficult with my parents. I think that losing someone who you brought up to the world, is the worst thing that can happen to you.

I remember well the evening when I had to go to my parents to tell them that there was no more treatment to be offered to him. Telling my parents that it was over was the most difficult thing I have ever done in my life. My parents had two different reactions. My mum, who is very religious, didn’t believe that this could happen to her son and was completely shocked. My father had an angry reaction towards me and he started saying: ‘What are you talking about? What are you saying to me?’. Then he began to cry and my mom came closer to hug him. It was all very hard.

Kasia - Wasn’t Alberto with you at that time?

Emanuela - No. When we went to Milan for a follow up visit, his leading doctor was not there because her mother had died the other day. There was a different doctor, who I had met before, but I did not like her at all. She seemed very cold and tactless. So when I saw her I approached her outside the consultation room and asked: ‘You are not going to continue with the immunotherapy, are you?’. She said: ‘No, I am sorry’. I replied: ‘You won’t say it to my brother today. Please tell him that you cannot carry on for now because he is too weak as he has not been eating for weeks’. And so she did. He was really worried that day and wanted to know when he could have the next session of immunotherapy. I told him: ‘Albi, you are so weak now because you haven't eaten for a month. Now they will change your medicines and you will see that you will get better’. And as a matter of fact he did.

Kasia - Was there anything that brought you comfort when he died?

Emanuela - It comforted me that he died and did not suffer anymore because in the last week he deteriorated so much. Last night was very hard for me because the doctor said he wasn’t there anymore. On that day he began to gasp, it was not a real breath anymore. It seemed to me that he was choking and it was terrible to see and hear that. I was really out of my mind at 4 o’clock in the morning and I called the doctor. She was really empathetic and said: ‘I know what you are trying to find out. I don’t know how long it will last, half an hour or couple of hours but it is like when you arrive in the world. You see a woman who is giving birth to a baby and she is suffering. And you don’t know how much longer it will take. It is a natural passage but I can reassure you that he is not suffering anymore.’

My mum called at 7:20am to check on him. I told her to stay at home as he was sleeping. I really did not want her to come and hear that sound. When I hung up, I realised there was no noise anymore. I went to his room and I found peace and beautiful silence. I was very grateful that morning. Grateful that my parents did not hear that sound.

Kasia - How is your relationship with your parents now? How has it changed since Alberto's death?

Emanuela - After his death, it was very difficult for me to get back home. I felt guilty because I felt I did not want to go back to my children and my husband. I did not want to go back but at the same time I could not stay there. Now, if I could I would go to visit them every weekend but I don’t do it because I see that they have started to live again. My father plays golf and is very involved in the development of our charity and my mum plays piano in churches. I don’t know how our relationship has changed but the bond we have is now even stronger than before.

Kasia - Do you talk about Alberto often with them?

Emanuela - It is probably easier for me to talk about his death with his friends than with my parents. For my parents it is probably too difficult. But we often talk about how he was before he got ill or how he was as a child.

Kasia - Tell me more about the charity which you set up after his death. Why did you decide to do it and whose idea was it?

Emanuela - So it was my idea at first because I thought that he was too special not to remember him as he was. But when I brought this up, my father probably did not hear what I said. It was probably too early. Almost one month later, my father’s good friend said: ‘But why don’t we create something to commemorate him?’. And it is how it all started. The thing is that running a charity is very complicated but this is the reason my 82-year-old father gets up every morning and goes on his moped to work. So we are doing our best, every day moving forward just a little bit. For how long? I don’t know.

Currently, we are in the process of preparing another melanoma prevention day which will take place on the 9th of April 2022, close to Alberto’s death anniversary. The worst day for us can become a very important day for many people. On that day, 5 or 6 doctors, including Alberto’s oncologist, will offer free mole mapping checks in one of the squares in Genova.

Kasia - Not many families would have motivation to create something so meaningful after the death of someone they loved. For me it is a sign of your strength.

Emanuela - I don't really know. I think that first of all it's a cure for us. It is something that helps us cure our own pain.

Kasia - As you know, I speak to people from different countries to find out how their culture or religion has shaped the way they grieve and perceive death. Did your culture and religion have any impact on how you have been experiencing your brother’s death? I am aware that your family is very religious.

Emanuela - It’s a big question and so individual. My mother who has had an intimate relationship with God felt betrayed at the beginning. I was very worried because her faith has always helped her carry on. I was afraid that she might lose it. I noticed that my brother died on Good Friday, just like Jesus, the God’s son and I tried to make her think about it as a sign of closeness from him. This gave my mum her faith back.

For me, it is different. When Alberto died, I began to think so much about death and dying. What does it mean? Who are we? Where do we go? My belief is not really catholic, rather more buddhist although I don’t want to use terms I am not very much familiar with.

I don't know if Alberto is close to us, that's what we hope for. However, to think that life after this life means being close to the people who remain and guide them reduces what the afterlife might be. Therefore I hope that there is something much bigger and more beautiful than this, something that we cannot understand right now and that I will discover in a moment when I can hug my brother again.

---

After the death of her brother, Emanuela Castelli with her family founded the charity Fondazione Alberto Castelli, which main task is to raise awareness around skin cancer. More information can be found on the charity's website http://fondazionealbertocastelli.it/ and on Facebook https://www.facebook.com/FondazioneAlbertoCastelli