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I was 20 when my mother had a brain stoke while riding her bicycle, broke her hip and was blood transfused, during an orthopaedic surgery,  with infected blood. She got Hepatitis C, which was the cause of her death, 19 years after the day of the brain stroke.

I was informed about the stroke while phoning home from a public telephone (there were no mob phones at that time) to tell my parents that I would go home very late. I was at the University, attending a BA in philosophy, and I wanted to stay out for some screenings at the University’s theatre. I was very fond of cinema, as well,  and I thought it would have become my job soon or late. I was just come back to Italy after a long journey in the States following the steps of Kerouac and the  beatnik  generation. I was 20, in love with the cult of freedom, with great expectations for my future and, while at the phone I was feeling as if I was death sentenced. Of course, selfish as I was at that age I was thinking about myself, not about my mother.

I did not know how to react. I went to the hospital. After she was sent home, I tried to be as present as possible, I was not counting on my father or brother. I felt I had to be there, as if I was the only one able to take care of her. I isolated myself and my mother from relatives.  I slowed down with university, passing exams, but not attending. When my mum felt better and could take care of the house I found a job I loved, as an assistant photographer, and started building my career. From time to time I passed some exams. Then at a certain point I had to quit university., which I finished after my mother’s death.

I was travelling for work, spending weekends at home for helping my mother keeping the house.  But what killed me the most was the depression which my mother was slightly slipping into for a while. I wanted to see her happy again. That was my only wish.

The neurologic condition consequent to the stroke was worsening but slowly preventing my mother to be depressed. Hepatitis C was literally killing her liver, her blood values were terrible, but the good news was that she was not depressed anymore.

On the one hand her condition was worsening, on the other there was an improvement. She was smiling, enjoying my care, again very sweet and funny, despite not autonomous. The brain stroke left her a bit aphasic. We got closer. We forgot to use words and learnt how to use our body to communicate our love to each other.

Things seemed to be fine but I felt different from my peers and I felt a lot of angst. Panic attacks, which broke out starting one year after my mother’s  stroke, were more and more frequent, but I had strategies. I always had water with me, I tried to do more sport, running mostly, and I forced myself to think that I could not die because of attacks. I only had to wait for them to leave. It was like when a very unpleasant relative passes by. I only had to wait for her to leave.  My mum had frequent exams. I did not allow anyone else to take her to do exams, but before leaving home I had to lie down in bed for 30 minutes and think about the way to the hospital, where I would park the car, how I would find the shortest way with her at my side, being afraid for her to fall down. I felt paralyzed. We did not use a wheelchair, we did not accept it. As a matter of fact, she could walk and I took her around on every Saturday and Sunday, but fear never abandoned me.

She was my first thought of the morning and my last thought at night. I locked ourselves in a bubble. I avoided to have friends at home, to attend relatives. I hated how they felt pity for her, how they talked about her pretending that she was not in the room.  She was there and nobody talked to her. They could not get she was still as beautiful as she was before and as sweet, social and kind as she used to be, so I just let them out of our lives. I was getting more and more in love with my mum and when I was with her I was discovering some beauty inside myself, as well. I liked myself better when I was with her. But it was not that easy anyway. Sometimes I felt sudden rage that had to come out. I did not have the life of an average 30 year old person.  I could not spend carefree weekends at the seaside or on the snow, despite my job was very well paid. I had responsibilities which clashed with my urge of freedom and I was living in the constant fear that she would fall down or got worse or feel sad.  On weekends I was cooking fine traditional food for the family for creating the atmosphere I used to enjoy before her stroke, but things were so, so different. My father and brother were helpful but I was not sharing responsibilities with them. I did not open my heart to them and I never asked about what they felt regarding the sudden change that affected our family.

My mother seemed to get older very fast. She needed more and more help. Then she had another surgery at the hip and many hospitalization because of the liver. 12 years after the stroke, I faced for the first time the threat of her death. Since then, for 7 years, every second day doctors used to say that it was a matter of days.  But they did not know her and our lifestyle. They could not believe that she had a regular life with walks, grocery shopping on Saturday and that she was not lying on a bed all day long, but only to sleep at night.

Nevertheless, she needed someone home full time. We tried to avoid that as much as possible, but after she fell down at home, while she was alone, we decided to hire a professional caregiver. I was still very present, despite travelling a lot. At the beginning I did not trust the 2 caregivers who used to shift, but then they became part of the family.

In the meantime, I became a filmmaker, so I was travelling for shootings and festivals, but I could not wait to be back home, with her, having control on the situation and making her laugh. Wherever I was, my day could not start without a phone call home to see how she woke up. If she was ok, my day was gorgeous, if she was weak and could hardly walk I felt angst all day long. Being home was much better, at least I could have her next to me and I could have control. After professional caregivers entered our lives, many things changed. I also opened the house to friends and our life was much more joyful and easier. I was accepting other people’s help, but, of course, I was also much older and more mature. Now, when I think of those 19 years I remember mostly beautiful memories than sad memories. I remember every laugh, our dancing on the balcony, my friends giving her drops of coffee, despite forbidden to her, behind my back, or to our luxurious breakfasts after blood exams or an echography, as a reward for her braveness. I remember our marathons making homemade pasta during weekends and holidays. I certainly felt very confrontational feelings during those 19 years but I felt I was surrounded by beauty, as well. Those who say that taking care is pure love, they say a lie. To take care means also to hate, to feel rage, to be in denial, to be depressed, to feel the same psychological states of mourning, or grief. At the beginning I was pretending I accepted my mother’s condition and taking care of her was not a burden. It took a while, some years, to turn care into an experience of love, of growth, of feeling home. I don’t know how it happened, but it did. While driving home I used to feel lighter and lighter, until I opened the door and saw her refreshing smile and smelled her perfume of fine body creams. I felt happy. I still have very strong sensorial memories.  Organisation of the house, help of others, honesty with myself and my feelings, not forgetting my project of life was what kept me sane and maybe turned me into a good caregiver. I never stopped writing projects, studying or sowing while I was taking care of my mum. Whereas she had her power nap, I was working next to her, enjoying her relaxed expression. I also moved to my parents’ place for a while and instead of going out at night with friends I used to write. Most of that material was the starting point for my future projects, documentary films.  Sometimes I feel as if when I was a teenager I had some hole in my soul, which I filled up while I was taking care of my mother. It was hard to let her go, but I am happy she lived at least 5 years more than doctors expected. “It seems that Antonietta does not want to leave, that she is enjoying what surrounds her”.  I want to believe that it is true, that I made her happy and that she felt loved. I miss the caregiver in me. It was my best side. So now I only make films I really care about, since now I know how I feel when I care. I need that kind of engagement. I won’t waste not even one minute of this life my mother gave me for things that do not matter. I feel stronger. I know I can cope with anything and that I can see beauty where most people cannot see it.  I consider it the present she gave me. On her grave I wrote a couple of lines from a poem of John Donne: “Thy firmness makes my circle just, And makes me end where I begun”. She is my fix foot and gives me a direction.

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