Dopo di noi
Maria's bedroom - Tonina is a woman in her 50s. At the age of three she was diagnosed with muscular dystrophy.
Tonina’s father died when she was just six months old. Since then her mother, Maria, has been taking care of her.
Tonina is a woman in her 50s. At the age of three she was diagnosed with muscular dystrophy.
Her daily life is mostly made possible by her elderly mother.
Even something seemingly easy, like going to the toilet, takes many minutes of preparation.
After lunch, Maria prepares the toothpaste already on the toothbrush for her daughter as she doesn’t manage to do it by herself.
Maria is very worried about her daughter’s future. “I’m worried ‘cause I don’t know who will take care of my daughter when I’ll be gone”
Before sleeping Maria massages Tonina's feet to help the blood circulation.
To get out of the bed, Tonina needs a tool called “giraffe” or “horse”, that literally lifts her up in the air.
All the operation is possible only with the help of her mother.
During the night Tonina calls her mother many times, as she needs to be helped in rolling from one side to the other. To make this operation easier, a sheet under her is pulled in one or the other direction of the bed.
Since few years Tonina has a boyfriend, who’s slowly learning to take care of her needs.
Sean is 19 years old and he’s autistic. Autism is still a relatively unknown disorder, and the treatment for it remains, for the most part, experimental.
Even after divorcing, Nando and Grazia together continue to contribute very much to Sean’s quality of life. Walks, trips, and activities keep Sean busy and help him to avoid isolation and solitude, things that make him feel worse and harder to control.
Sean doesn’t feel the need of going out or doing something other than being on his own. As an autistic person he has many difficulties in dealing with feelings and emotions. For example, when he watches cartoons on the iPad, he often laughs out loud for no apparent reason, gesturing with his hands and head while imitating the noises of the cartoon.
Sean lives in Bergamo with his mother and sister during the week, where he attend the artistic school. Walks, trips, and activities keep Sean busy and help him to avoid isolation and solitude, things that make him feel worse and harder to control.
Together with his father Nando, Sean attends karate lessons. This kind of sport activity is really helpful for controlling better his body and more is a way to socialize with other teenagers.
Flavio lives with his mother, Vanna. His father died a few years ago. Together the two parents were able to take care of their “big boy”. Flavio is indeed almost two meters tall.
Since the loss of his father, there was a necessity to have someone help him in his everyday activities, going to bed, waking up, showering, going to toilet, so they hired a caregiver who’s there for Flavio day and night.
Flavio is a man in his 40s. His life was like anyone else’s, until the age of 27, when he was diagnosed with muscular dystrophy.
Only a small part of the expenses for Flavio’s healthcare are being paid by the Italian welfare system.
When the weather is nice, Flavio likes to spend some time in the open air in the garden. He requires a respirator that helps preserve the muscles in his lungs, severely affected by the disease.
Because of the early stage of the disease, Flavio still manages to drive his truck, specially modified for him. So almost every day he takes his elderly mother to the city center to run errands.
Vanna is worried about her son’s future: “I hope that someone will take care of him when I won’t be able to, if not in the way I do, at least in the way to give him a decent life”.
Living in a familiar environment can be a big help for people with disabilities. Staying in contact with friends and loved ones is as important for the mind as the therapies are for the body.
Filippo is a young man on his 30s. He’s affected by a rare disease called fragile x syndrome. Filippo is like a baby in an adult’s body.
Mariarosa and Mariano care for their son since his birth. Their respective families have left them practically alone to deal with their son’s disease. Mariarosa tells that, despite living next to relatives, none of them has ever offered to take care of Filippo. Not even for a few hours, to give the parents the freedom to have a night out as husband and wife.
A disable child needs many more attentions than a normal child and for a longer period. All this can affect the relationship between the two parents leaving no time for them as husband and wife.
Filippo spends many hours a day lost in his thoughts, doing things that keep him calm. One of these is to watch the washing machine spinning.
Filippo spends many hours a day lost in his thoughts, doing things that keep him calm. One of this is to listen at the voicemail in a loop.
In the morning, Filippo and Mariano have breakfast together, before he gets ready to leave and spend some hours in a center, where he gets to perform some manual activities that keep him busy.
Filippo’s personal hygiene is something that his parents take care of regularly. Filippo showers daily with his dad, who also brushes his teeth and washes his hands.
In case of a dental problem even a small cavity, Filippo would have to undergo a complete anaesthesia, as he wouldn’t be able to stay still even for a few minutes.
Mariarosa often talks about the difficulties they had to face as a family. Mariano had to give up his career as a policeman, refusing to move far from the family. Mariarosa has dedicated all her life to look after her son.
Their relationship has suffered a lot from Filippo’s condition, because he needs their full attention. The lack of State‘s help on the issue make it impossible for them to have any alone time.
“Filippo sleeps in bed with me since few years ago, otherwise he would be waking up every hour, so my husband sleeps on the couch” says Mariarosa.