In the last post, I wrote about the effects of the COVID-19 emergency on elderly care in Italy and the new ethical challenges that emerged in one of the most aged countries in the world under the current crisis. I discussed how the main issue has become how to balance the risk of contagion with the rights of care workers and the demands of care and assistance, which concern not only sick elderly people but also their ʻfamily carersʼ.
The COVID-19 virus has met a National Healthcare System in Italy that has already suffered from the neoliberal programs of cost-containment, as well as from the fragmentation of regions and municipalities in the central government.
In the last thirty years, Italy has developed a welfare mix-model that has relied mainly on home care-workers, mostly recruited from amongst the migrant population, to attend directly to the needs of aged people. And more recently, renewed public attention has been given to the economic difficulties, emotional exhaustion, and fatigue experienced in providing intensive assistance to those affected by neurological diseases, thanks also to the advocacy actions undertaken by the newly created ʼItalian carers associationsʼ. In their attempts to favour recognition of the problems experienced by family carers, associations and institutions have insisted on the social and communitarian value of the spirit of self-sacrifice in caring for family members.
In this post I continue my reflections in focusing on how aged people with neurological diseases and their family carers are experiencing the current phenomena in one of the most affected regions, Emilia-Romagna.
People widely recognized the COVID-19 as affecting only elderly people or those who already have a serious illness, even if there is evidence that the virus can potentially be deadly for young and healthy people also.
Initially, the media campaign to ʻ stay home and stay safe ʼ was directed mainly to elderly people, inviting them to wash their hands often, reduce long walks and limit their social life at senior centre. To me, this campaign seemed strange, because until now doctors and institutions have insisted that sociality and physical activity are the way to have a happy old age. This is especially true for Emilia-Romagna, where there is plenty of activities such as tango therapy and music therapy for Parkinson’s patients, widely promoted by local neurologists. All these activities and many other rehabilitation therapies are now interrupted.
Sandro used to go out for a walk every morning with his wife, Gianfranca, who is affected by Parkinson’s disease. I met them together at a ʻ Parkinson Café ʼ where they enjoyed going to meet other people and to sing and dance together. In the past weeks, they still used to go out walking, as Sandro told me:
“We go walking because Gianfranca is always ‘stuck’ when she gets up in the morning, and then she gets unstuck little by little. We had to stop doing it because there were too many people and it became too dangerous, and now we go only around our house. We need to avoid contagion because if Gianfranca is hospitalised she will have problems following her therapy – she takes about twenty to thirty pills a day – and I will not be able to visit her. I’ve seen incredible things: five people taking the dog out, teenagers sitting and chatting with their smartphones. We have got a good reason to go out, but there is too much irresponsibility. I think that the most irresponsible people are teenagers and the old-old… I’m old, but I’m only seventy-four years old… For example, a friend of mine is ninety-two years old and still goes to buy groceries two times a day because he says that he has always done it this way. What does it mean “I’ve always done it this way?”He is crazy“.
Public and media discourses have often insisted on “irresponsible” elderly people going around without caring about themselves and others, reproducing in part the representation of aged persons as a burden for the economy, the community, and the healthcare system. However, the focus has been less on how to balance the risk of contagion with the demand for essential care needs.
Sara is an Italian care worker who has recently phoned me and told me the story of her uncle, a very active person who had a stroke almost one year ago, and who is getting worse and worse due to the limitation of physical and social activity and the interruption of rehabilitation therapy:
“Maybe you should write this in your notes because the situation is worst for these people who can’t understand the new laws and have to adapt to all these sudden changes. His partner has tried to convince him to use an exercise bike, but he refuses to do it. He had to interrupt his speech therapy, and I see his decline has accelerated rapidly. I used to visit him three to four times a week because she [his wife] hasn’t got the patience and this is my job, so she relied heavily on me. I can perceive that he is sorry for the fact that I don’t visit him often and we don’t have lunch together. His wife says that it is not clear if it is allowed to go out for a walk. They go walking around the house for thirty minutes bringing the ʻcertificate of hospital demissionʼ because she can’t go to her doctor – who is far from where they live – to obtain a medical certificate to go for a walk. She says she hopes to meet an understating police officer, and she doesn’t wish to pay the fine”.
Before the COVID-19 pandemic, in Italy, as everywhere in the so-called Euro-American Area, the public conviction has been that medical advances have succeeded in defeating the infectious diseases of the past, reassuring people that they have a possibility of living a longer life. The issue has thus become finding ways to face the ironic consequences of having reached longevity, namely chronic disorders, and disabilities. Maybe COVID-19 will help to put in crisis all of these assumptions, consequently visibilising all the labour that is needed to make a “long life” possible.
ABOUT THE AUTHOR:
Francesco Diodati is a PhD student in Cultural and Social Anthropology at the University of Milano-Bicocca. His research project is entitled “The recognition of the fatigue of caring. Aging, Caregiver, and prendersi cura in Emilia-Romagna, Northern Italy”.
(Photo by Cristina Gottardi on Upsplash)
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