Reportage
Family caregivers are hanging by a thread while a law meant to help them languishes
There are more than 7 million relatives who care for the disabled, sick and elderly in Italy. These are the stories of some of them.
In a residential area to the north of the historic centre of Finale Emilia, a small town in the province of Modena that will make some recall the image of its clock tower broken in half by the 2012 earthquake, in a red apartment block, Giovanni Terruzzi looks after his mother, as he does every day.
The flat is on the ground floor. In the kitchen, which is clean and tidy, there is a table and a sofa covered by an orange cloth with an anti-bedsore cushion. Maddalena, the mother, is 80 years old and suffers from Alzheimer’s. Terruzzi, 61, a former employee of a financial company, helps her with everything: he is a family caregiver, a person who voluntarily takes care of a dependent relative. According to 2015 ISTAT data, there are more than 7 million people like him who care for the disabled, sick and elderly in Italy. They represent 14% of the population aged 15 and over: 15.4% of women and 12.5% of men. The age group most involved in caring for family members is between 45-64 years old.
“During the day, I am always here,” Terruzzi explains. “I get her up, take her to the bathroom, then accompany her to the kitchen. If I hold her up from behind, she can walk slowly. She sits on the pillow, watches TV for hours and then falls asleep. Every two and a half hours, I take her to pee, and at 7 o’clock I give her food. I make her a milkshake because she has no teeth. I need help to wash her, otherwise I risk hurting her: she’s very delicate.”
In the evenings, Giovanni goes home to his partner, as he can count on a friend being there for the night, whom he’s allowed to live for free in a room in the flat he bought to look after his mother and her partner, who fell ill with cancer and whom Giovanni also cared for until his death in 2018. In 2015, Giovanni lost his job and decided not to look for another one, in order to be able to guarantee continuous care for his loved ones.
Giovanni’s role is not yet protected in Italy, but in July, the Senate Labor Commission resumed the discussion on Bill 1461: “Provisions for the recognition and support of family caregivers,” with M5S Senator Simona Nocerino as first signatory. Among the measures envisaged are the recognition of three years of social security contributions, the possibility to reschedule working hours according to the care activity, the recognition of skills acquired by assisting a family member in order to facilitate reintegration into the labor market and a 50% deduction in healthcare expenses. By July 22, 131 amendments were tabled, but the text is still under consideration.
For some, this is an important step forward, while for others it is an insufficient measure. According to Alessandro Chiarini, president of the National Coordination of Families with Disabilities (CONFAD), this is inadequate: “It is essential to identify ways of economic support, social security and insurance protection.”
Oriana Magagnoli, who is playing cards with her 79-year-old mother Gina, who suffers from dementia, is not aware of the debate on the law. “She was suffering from depression. When my father died in an accident it got worse, then in 1997 my brother died, and she was never the same again.” Her mother interrupts her and points to a family photo: “Luca.”
Oriana is 58 years old, lives in Bondeno, in the province of Ferrara, and receives an ordinary disability allowance. She is in Finale almost every day to assist her mother and her brother Graziano, who is developmentally challenged. In the mornings, Gina attends a day center for elderly people, while in the afternoons she is helped by her daughter and a domestic worker who cleans and keeps her company for an hour. At 5:30 p.m. a home care worker from the Home Care Service (SAD) washes and changes her and delivers her meal. In the meantime, Graziano returns from work. His presence is essential during the night.
“There’s little time left for private life: I come here, I go shopping, I go to the pharmacy, then I come back here to keep her company, and when evening comes, I go home, because I also have my own family. When I was still working it was very difficult,” Oriana reflects.
Chiarini, the president of CONFAD, focuses on those who are working or who are forced to abandon their job: “It is difficult for caregivers to reconcile this activity with work,“ she explains, referring to those who live with a relative with severe disabilities. “They are often at risk of poverty.”
Giovanni is managing to make ends meet, but admits: “To help my mother and her partner, I sold everything that was unnecessary, like their cars.” Then he gets up. He picks up a ledger in which he writes down his income and expenditure: “Last year I was €300 short, but in 2019 I was €1,000 short.” He laughs nervously and confesses: “Just think, I managed to get a €30 discount on the electricity bill for electronic medical aids.”
Public services have a cost too, explains Letizia Piccinini, a social worker for the municipality of Finale: “The home assistance service, the SAD, which can include, for example, bathing, help with personal hygiene, going shopping or delivering meals at home, has an hourly rate of €14.” The day center is also for payment: “For a full day, it costs a minimum of €29.50, or €18 for part-time attendance.” To cover such expenses, it is possible to apply for the care allowance provided by the Region, the first to approve a law recognizing caregivers in 2014.
In addition to the economic aspects, health is also at stake. According to Andrea Fabbo, director of the Complex Facility for Geriatrics – Cognitive Disorders and Dementia at the Modena AUSL, “there are studies showing that there can be repercussions, not only psychological, but also on the health of caregivers. They fall ill more easily.”
While we wait for a law on caregivers, the fund set up in 2017 to finance legislative interventions in this area has remained unused. It was thus decided to reallocate the resources for the three-year period of 2018-2020 (about €68 million), which will be allocated to the regions for support and relief interventions in favor of family caregivers. The 2021 Budget Law will replenish the fund by €30 million per year until 2023, and also provides for a monthly allowance for unemployed single mothers or single-income mothers with disabled children: a bonus worth a maximum of €500, available for the next three years.
“A caregiver law could be a positive thing,” reflects Giovanni before going back home from his mother, “but I’ve been laid off years ago and nothing has happened yet.”
Oriana would be happy to receive any kind of help, but she knows she has to deal with real problems: “When my mother stops walking, I will have to take her to a care home, because I would not be able to take care of her, and at that point I don’t know how long she will go on. She and my brother have a symbiotic relationship, what am I going to do with him? I can’t leave him alone.”
“Come on!” Gina interrupts, pointing to the cards. There is time for another round of briscola.
This reportage was conducted as part of the reporting workshop held by G. Battiston and M. Loche for Collettiva.org.
Originally published at https://ilmanifesto.it/le-cure-in-casa-i-caregiver-familiari/ on 2021-02-14