Caregiver, who takes care of whoever cares?

This entry is posted on number 21 of Vanity Fair on newsstands until May 20, 2025.

Maria Rosa was a siren: if you looked at her like this, how to look at people, you saw a beautiful lady and that’s it. His secret, his fish tail hidden under the hair of the water, was the dementia that no one sensed. Tiziana, on the other hand, tells herself as a woman with four hands, twenty fingers of the feet, two heads: half is her stuff, the other half of her daughter Morgana, twenty years old, with severe autistic spectrum. This story, a story of care, tells of fantastic creatures in every meaning of the term. Maria Rosa, called Mary Pink, has been there for almost two years and her daughter Elena still manages to hear that for her, now, “everything is possible: taking a plane, going out in the evening”. For thirty years he took care of his family: he was sixteen when his brother died and everything began to slip.
«My mother had five tumors before Alzheimer. My father only one, the definitive one, “he says. Since Maria Rosa passed what she passed, her neurological disease has long been underestimated by doctors, considered a side effect of everything else. The doctor who made the diagnosis communicated him to Elena with these words: “Lady, at most he will ask her several times if it’s Sunday, she always tells yes”. It was 2016, the same year in which her father died and Elena found herself alone to manage everything. “My mother had behavioral disorders, she no longer had a stomach and ate every half hour, and every half hour she went to hypoglycaemia: no caregiver returned a second time. So I did, even if I didn’t know anything ».

Elena knows that in that taking charge there has always been an extra piece: the desire to compensate, with her constant presence, the price of a difficult life. «I saw his friendships first disappear gradually, the doctors irritate because I asked too many questions, the closed doors, the possibilities denied. The closest people remained with us, but for the rest there was a cosmic void. I understood that if you have a problem, society helps you, if you have too many people stop listening to you ».

To be with Mary Pink, Elena has changed the city, work, she never came out for dinner again, she has no longer entered a cinema, she never took a shower or pee on her own. «But the biggest renunciation was the children. I have a partner who has patiently waited for me for fifteen years, but time has made that unrealizable desire ».

In recent times of his life the siren had no longer managed to hide the tail: the wheelchair had also arrived, which Elena had decorated with rose. They went around together and gave, to those who crossed them, pink feathers they meant: do not be afraid. Now that her mother is no longer Elena has returned full time to her work as a municipal librarian in the Gallaratese district, the suburbs of Milan. The isolation he tried, the distrust he saw in the eyes of those who met, have pushed him to make the library “dementia friendly”, that is, friend of people with dementia and those who take care of it. There are activities (readings, vegetable garden, music, theater) for fragile people and theirs caregiver But they are open to everyone, “because everything becomes normal if we mix,” says Elena. There is an orientation desk for services and rights and, at the entrance, there is a shelf with books on the topic, practical manuals not to feel remotely, as happened to her. The day after we talked about Elena sent me a message: «I always say that I do it because nobody lives what I lived. But it is also, perhaps, my way, at this point the only possible, of being a mother: taking care of people, leaving something inheritance that can help them cross the hard moments without losing the desire to live and smile. Despite it all”.

QThe arms, twenty fingers: to make her daughter of her daughter work, Tiziana must put her own. Four feet, four legs and the day of Morgana – “Twenty years but in reality three due to a very serious form of autism and mental retardation”, says his mother – begins. Shower, breakfast, school. You enter the door after making several laps around the building: the laps around are one of its stereotypies, the repetitive behaviors of people in the autistic spectrum. «He likes the school a lot: he has an educator and a support teacher. And he has wonderful companions who have always made her feel welcomed ». The four, five hours of the school are the only ones in which Tiziana manages to do something for itself and for the home. He was a worker but, after the diagnosis arrived when Morgana was two and a half years old, he had to leave the work in the factory that he loved a lot and then also the part-cleaning part-time one, incompatible with the needs of his daughter.

Her husband Roberto, a worker too, gives great help, but does the shifts and Morgana’s load weighs mainly on his mother. Once the school is finished, it has lunch: sixty -four teeth, and food only in colorful and round containers because she eats only like that. «Then I take her to the parks to run. Running her feel good, but I have to run with her because she doesn’t have the perception of danger, I have to look at her on sight. If we do not run, we turn by car: it makes her happy. But I’m getting used to buses too. Why will we not always be there: afterwards, who will bring it by car? ».

What will be after them is the greatest anguish of Tiziana, who has already started the “life project” with the municipality of Brembate di Sopra. «The municipal administration has always been close to us: the educator has given Morgana, the opportunity to go to the summer camp in the summer, to play sports once a week. Hours here and there, small Solievi for me who are always tired because it is as if I lived not one, but two lives, mine and his ».

To tell her double life, Tiziana uses a religious image, says that it is like “the ascent to Golgotha”, the ordeal of Jesus, but touched by a family like many others, in the Bergamo area. One of the group’s mothers In the dorothy housethat Tiziana founded and which collects parents of children with autism, wrote “will end only when I die”. «The chat is the place where we show off, we console ourselves, we make strength between us. If one does not try, he cannot understand ».

In Italy, they say the most recent data, there are almost 8 million caregiverof which 7 million are caregiver Family, 60 percent are women, more than half of whom she was forced to leave your job to devote themselves to care, which is a job in all respects. There is still no national law that protects the figure and the rights of caregiverbut in 2024 the Ministry for Disabilities and the Ministry of Labor and Social Policies started a table to make up for the legislative void; The result was a draft bill which has yet to be approved by the Council of Ministers.
Caregiver It is a definition that contains many different realities, but with common traits, first of all the need that there is someone who takes care of those who take care.

In Italy, 60% of the caregiver are women, but there is no law that protect them

Maskot

THEphysical and emotional load, social isolation, difficulty in reconciling one’s life with the care activity make the caregiver fragile from different points of view. «Both of them must be taken over: the patient and his own caregiver“, explains Antonella Pelittamanager of Geriatra Manager at the Complex Operations Unit of Cognitive Disorders Ausl Modena. The professional figures involved in the care path are many and different: from Case Manager to the psychologist, from doctors to employment therapists. Modena and the Emilia-Romagna region are an excellence in the matter of approach to care. As well as the Lombardy Region, even if the Lombard stories of Elena and Tiziana tell two very different realities. «In the end I believe that I count so much luck: if you meet the right doctor he changes everything. In my experience, the people who have been able to help me more, open my doors, to tell me the roads are the ones that, in some way, had already passed from what I was experiencing », explains Elena.

Tiziana, in her small town of eight thousand souls, has found listening and support. «Now Morgana is making the insertion to the disabled day center. For now a day only the week, then we will increase, “he says. When I ask her what she would do if she had everything for itself, Tiziana talks to me about the sea of ​​Naples, which she has seen sometimes and that she would like to see again. Don’t swim, but walk in front of us. With only two legs and two feet, at least for a day.

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