“Many people I have come to know reminded me that they lived almost in isolation also before the Covid-19 emergency”
Emilia-Romagna, Italy, 20 March – 29 June 2020
I phoned Mariagrazia to continue our telephonic interview on her relationship with her aged mother. As usual, we have begun to discuss how people are experiencing the present situation. She told me that nothing has changed in her relationship with her mother, they still can’t stand each other. I first met Mariagrazia and her 80-year-old mother, Donata, at the Alzheimer’s café which I have been frequenting since last year. Donata had been living next door in the same condominium as Mariagrazia and her husband since Mariagrazia asked her to move there 8 years ago, when it seemed to her that her mother was no longer able to live alone in her house in another city. Mariagrazia brought Donata to the local Alzheimer’s Café after her geriatrician had told her that her mother “was cognitively ok” but needed to be in the company of and socialize with other people of her own age to alleviate the depression and loneliness that comes in old age. “You know, in the Alzheimer Café my mother is in better shape than the others, she has a little bit of depression and her legs are not good as they were in the past, but she doesn’t have dementia and can still take care of herself alone… Despite this, she always complains about everything […] Yesterday, a man was singing on the balcony – you know, all this kind of things like singing and playing music on the balconies that makes you happier. It was very nice, but she said he sucked, and then we had an argument”. Mariagrazia was missing her nephews – she is a 50-year-old young grandmother – and she was worried for her daughter and her husband because he worked as a sound technician for public events which were all suspended until an unknown date.
“I hope that the situation will change in due times but I’m afraid this won’t happen, and a lot of people are going to lose their job. It will be a disaster. Someone says it is all political, but I think it can’t be just a fabrication of the government”. Then we talked about the situation of the other visitors to the Alzheimer café. “Do you know that the adult daily living centre is closed now? Alessandro has told me that he can’t rely on the domestic worker anymore (donna delle pulizie), and he is stuck with her wife at home, and it is the same for all the others. And the problem is that he is not able to cook and all the restaurants are closed now, so it is a good opportunity to learn! (laughing). I miss him and Raimondo so much, our jokes and jabs at the Cafè”.
Many of the domestic care workers I know are losing their jobs, and the Italian government has not planned any form of support and sustainment for them yet. A home care worker explained to me that in many cases families are taking care of the elderly without them, and she is not sure she will be paid this month. Family visits are interrupted in nursing homes, and in some cases, the workers allow their guests to talk to their families through smart phones or tablets. A friend of mine told me yesterday that she felt happy because she managed to talk with her mother who lives in a nursing home: “They (the people who work there) are so gentle! My mom has realized that I can’t visit her for the moment and she has accepted it”. Mariagrazia told me the sad story of Adriano, who used to visit her wife in a nursing home every day. “But since they stopped the visits, he is worried that her wife won’t be able to recognize him in the future. He confessed to me that sometimes he is not able to wake up from the bed in the morning”.
Why Italy? Why have we so many deaths, so much suffering? I’m wondering about this question that Leana asked me yesterday on the telephone: “Because you know, you have studied and you are an anthropologist”. “I don’t know Leana, honestly. Maybe it is fate. There are many other places in which the virus could have spread first. You can’t control everything; you can’t find an answer to everything. We are not so accustomed to epidemics since many years but now we are experiencing one, I hope it will not destroy us”.
This morning, Fabrizia was very worried for her grandpa: “He is used to go out every single day, and I’m sure that his wife tells him to continue to do it because she doesn’t want to hear his complaints. He told me yesterday that he can’t stand watching the television all day and hearing all the advice of ‘washing hands properly’ and so on! He misses going to the bar with his friend playing cards. He is stubborn and he can’t understand it can be very dangerous to go out for a walk, the virus is spreading in the town. I missed them so much, I don’t think it will be possible to visit them for Easter holidays this year. ” Her grandmother is used to visit her mother every day because she lives just in front of her – in the same condominium – and Fabriza believes that it is not possible to forbid at all an old person to chat with her daughter in law. Yesterday, she was offered a job for nurses in the local Nhs unit, but she refused because it was only for six months. “They are asking all fresh graduates. But shall I work for only a few months? I don’t think so. I know myself, I can’t work in the reanimation unit. You need to have a cool head and I’m not a hero. I always said to the other people who said that it is cool to work in the reanimation that they were crazy.” She is also worried because she thinks that the clinic will fire her in the next days. There are different voices, and the owners are not sure about what to do. I remember that in the last weeks she told us that, despite the news on infected people coming from the near Venetian region, the surgeons didn’t want to cut the appointments because they were afraid of losing money. “They are crazy, they don’t have a conscience”.
Fabrizia doesn’t go to work today, and she doesn’t know if they will ask her to go to work tomorrow. The clinic has closed some units, including the one where she works. The owners haven’t managed to find the safety masks of their workers, and the safety devices ordered now are stuck at the border between Emilia-Romagna and the Venetian region. The local hospital has been reorganized for the patients affected by COVID-19, and she is afraid that some of them will come from the hospital to the clinic. She is not sure if the owners will give her unpaid vacations or if she will benefit from the extraordinary layoff set by the government. Some of her colleagues discussed this in the morning, and they reported the case of a surgeon who was the first to cut his scheduled surgical treatments because he said that he wanted to sleep soundly, without regretting to have provoked avoidable contagion. The majority of the patients are aged people, and in the past days, one of them has decided to pay almost 5,000 euro to have a single room. The other surgeons blamed the surgeon and accused him of causing them damages because they thought that they will be obliged to do the same. “How much money do they need? It is incredible I don’t know how they can sleep at night”. She still struggles with the decision to accept the job at the public hospital. On the one hand, she thinks that it is a little paid and precarious job [taxes are very high because it is a sort of freelance employment], on the other hand she believes that she should make her own contribution. “I studied as a nurse, and now I feel very selfish because the situation is terrible and I ‘m thinking about myself and the money. My father [who is a carabiniere, a military police officer] told me that we will make history fighting the coronavirus and I will tell this to my nephews. I’m not like him, I don’t feel a hero”. This ethical conflict reminds me of a discussion with my colleagues that I had yesterday evening. I was telling them about the problems that many elderly affected by dementia, as well as their families, have to face in this period due to the closure of senior daily centres and the interruption of the activities of many home care workers. For example, this morning, one of the regular visitors of the Alzheimer Café I attended for my research texted to me that he can’t rely on the local adult day-care center and the woman who had hired for helping him assisting his wife with a serious dementia condition anymore. “And I can guarantee you that it is a problem much stronger for who is in the worst health condition, and there is no adaptation strategy as you wrote on the article you sent us [the online post about the impact of Covid-19 on care labor that I made for the online blog run by my University, the Università of Milano-Bicocca, on this period of isolation and quarantine]”. One of my colleagues, Gabriele, believed that elderly care has to stop in this period because aged people are at risk subjects. I replied that people affected by serious illness need assistance somehow, but I agreed with him that we have to face complex ethical tensions and many people have to take important and difficult decisions in this period. I remember also the articles of care-activists who are reporting the situation of many family carers who are stuck at their home with their relatives (https://www.huffingtonpost.it/entry/famiglie-con-disabili-lasciate-sole-nellisolamento-per-loro-solo-buone-intenzioni_it_5e6cabc1c5b6dda30fc9bdaf?fbclid=IwAR339AyVJBGS8FDMVLLjkEhQXKAxXKFRCMTAMiPNSUO80UZ_W9_PNHL4Z30 22/03/2020; https://espresso.repubblica.it/attualita/2020/03/18/news/coronavirus-l-urlo-delle-famiglie-con-disabili-ci-state-seppellendo-vivi-1.345740?fbclid=IwAR2FcaLC9WG0xFrNvLLgAdRcURnZCLxsM-H3W2VarzXFh933nRCzOIN1gtg 22/03/2020; https://www.ilfattoquotidiano.it/2020/03/11/coronavirus-noi-caregiver-siamo-sfinite-e-questa-volta-non-sappiamo-cosa-farcene-dei-grazie/5732690/?fbclid=IwAR1ibHUIX0R76v1ZXn-d8bvi5jy8kGMSQflSnLG9pZNlDBDgAFF7BchYHOo 22/03/2020).
There is also the story of a nurse who escaped the quarantine to visit and assist her aged father. The local health authorities replied to media that they were optimistic about the judge’s mercy, and that it is not possible to question “the professional ethics and moral conduct of nurses and physicians fighting coronovirus with an incredible spirit of self-sacrifice” (https://firenze.repubblica.it/cronaca/2020/03/21/news/siena_l_infermiera_evade_dalla_quarantena_si_ma_per_soccorrere_suo_padre_-251877568/?fbclid=IwAR27gtQgndTWwd0tzV6yj40gjHpsokWmqWt2a_B8PL_q5l-pvk5EIotstcg 22/03/2020).
Maria, an experienced home care worker, phoned me later and explained to me the story of her uncle, a very active person who had a stroke almost one year ago and is getting worse by the day due to the limitation of physical and social activities and the interruption of rehabilitation therapy. ” Maybe you should write this on your notes because the isolation is worse for these people who can’t understand the laws and have to adapt to all these sudden changes. His partner says that it is not clear if it they are allowed to go out for a walk. She uses to walk near their house for 30 minutes bringing the certificate of hospital demission because she can’t go to her doctor, who is far from where they live, to obtain a certificate for going for a walk. She hopes to do the right thing and says that she doesn’t care to pay the fine “. Maria asked me about my girlfriend (who is studying nursing): “I would have thought that they would have called her to work even if she is still a student. I think that many people should refuse it because they are treating them as cannon fodder. People need to work in safe conditions”.
Sandro phoned me today. I met him and his wife at a Parkinson Café where they enjoyed going to meet other people, to sing and dance together. In the past weeks, they still used to go walking as Sandro told me: “We often go walking because Gianfranca is always ‘stuck’ when she gets up in the morning and then she gets unstuck little by little [she has the Parkinson’s disease]. 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 hospitalized she will have problems following her therapy – she takes about twenty-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 around. I think that the most irresponsible persons 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 uses to buy groceries two times a day, he said he has always done it this way. What does it mean ‘I’ve always done it this way’? He is crazy. We made cutbacks in universities, healthcare, and culture and now we are seeing the results! We should recognize that every government acted this way, Berlusconi started but even the left party did it! It is a shame!”
Fabrizia is still not going to work, but she doesn’t want to talk about it. In the morning, I emailed with Graziano (home care worker): he thinks that we will face the virus for years and it will cause millions of victims around the world (especially poor and immunosupressed elderly people).”I can’t escape from a sense of depression and anxiety. I hope that this will give humanity a new awareness that we are not invincible even if we reach the Moon or Mars. I hope that the sense of solidarity and compassion among humans and populations will prevail in the end. I’m helping a widowed man with groceries and medicines and I still care for my mom. Many home care workers will lose their job, and the government seems to not care. But I think I’m more concerned about the possibility to lose my loved ones. I hope that my prevision will reveal themselves as too apocalyptic. It will be up to your generations to change the future.”
Here it is the whole e-mail exchange (In Italian):
Ciao Francesco. Sono contento che mi hai scritto. Così ti posso salutare on-line, anche se spero tu non sia tornato in Lombardia. Qui è stato diramato l’ordine perentorio di sospendere tutte le attività dei vari gruppi di auto mutuo aiuto. Si io sto lavorando (ma come sai vado da mia madre ogni giorno, il mio lavoro è quello e nessuno mi chiederebbe, nel caso, di sospenderlo). Non ho la più pallida idea di quali siano e come siano vissute le quotidianità lavorative dei miei colleghi, conosciuti o meno, anche se non faccio fatica ad immaginare quanto tutto sia diventato e diventerà infinitamente più complicato. Per quanto mi riguarda esco solo per recarmi da lei dalle 7.30 alle 14.30 circa, e non ho saputo dir di no ad un caro amico di famiglia 88N vedovo e senza figli che aiuto per la spesa, i rapporti col medico di base e gli approvvigionamenti di medicinali (e ci macherebbe che non lo facessi). Ma è già troppo, almeno per quanto concerne l’umore ed il senso di pessimismo che mi attanaglia, soprattutto per mia madre. Prego di sbagliarmi, ma ho la netta sensazione che questo virus mieterà milioni di vittime, particolarmente anziani e immunodepressi passeggiando qua e là per i cinque continenti, migrando magari col cambio delle stagioni e dov’è stato potrà tornare a piacimento, almeno finchè non sarà trovato e distribuito un vaccino, cioè tra circa un anno e mezzo o forse più. Nel frattempo si assisterà al peggio ed al meglio che il genere umano saprà…generare. Mi auguro che ne possa scaturire una diversa consapevolezza dei nostri limiti, perchè anche se possiamo andare sulla Luna o su Marte restiamo sempre dei bersagli, temo, da ora più che mai e spero che alla fine prevalgano il senso di solidarietà e di compassione tra gli uomini ed i popoli. Si dovranno destinare entità di fondi per la salute fino ad oggi impensabili a livello mondiale perchè altri virus si sprigioneranno nell’aria. Non potranno più esistere tanto accentuate differenze di qualità di vita tra i popoli e nelle società e spero si dedicherà veramente ancheal rispetto dell’ambiente l’attenzione necessaria. Scusami se mi sono dilungato in temi sui quali non ho alcuna competenza. Spero che Tu non abbia avuto a patire lutti tra i tuoi affetti e che ciò non capiti mai, come lo spero per me e che un giorno, quando tutto sarà più chiaro ci si possa ancora incontrare. Per ora ti saluto e ti auguro un buon lavoro. Speriamo che le mie previsioni siano eccessivamente catastrofiche e che tutto ciò passi in fretta. Sarà cosi, se Dio vuole.
È sempre un grande piacere ascoltarti e sentirti. Io sto bene, mi trovo a […] da quando è iniziato l’isolamento. Sino a tratti molto preoccupato, ma anche speranzoso che si riesca a evitare il più possibile una catastrofe globale, e che questi giorni ci faranno acquistare una consapevolezza maggiore per problemi come la salute di tutti e i cambiamenti climatici.
Un carissimo saluto,
Grazie. Dopo avere ascoltato il tuo intervento del 16 dicembre a Zola Predosa, considero il tuo un grosso complimento. Per la categoria dei badanti si prospettano tempi bui nell’immediato. Molti perderanno il lavoro e qualcuno la residenza. Il governo ha decretato che non si potrà procedere a licenziamenti nel breve termine, ma per la nostra categoria non vale. il decesso di tante persone anziane, se assistite, porterà inevitabilmente a questa soluzione, così come una maggior disponibilità di tempo da parte dei famigliari se conviventi, per non parlare della diffidenza verso il prossimo, che per un certo periodo risulterà amplificata. Ma credo che per ciascuno di noi l’interogativo più angosciante riguardi la possibilità di perdere qualcuno che ci è caro, fosse anche una persona alla quale siamo legati da tempo per il lavoro che svolgiamo, più ancora che l’angoscia per noi stessi e certo, i nostri famigliari anziani sono i primi ai quali siamo interessati. Coltiviamo tutti la speranza che il futuro, passata la tempesta, potrà sorriderci più di quanto non l’abbia fatto il passato. Poi toccherà ai giovani come te prendere in mano la faccenda. A presto
This morning, Giulia went to the tobacco shop to pay the electric bill. The owner cried in front of her complaining about the situation. The fact is that rentals are very expensive in the city centre and many shopkeepers won’t be able to start selling again after the crisis. Giulia is confused because of the nursing internship programs. Some professors want them to start again in April while others believe it is too dangerous and tutors are already overloaded. Many students are pissed-off: Giulia has a WhatsApp group with her colleagues of the third year (which is the last one of Bachelor degree in Italy), and they have been complaining all day because they don’t want to come back to the hospital. They’re afraid of the virus. Giulia’s parents are worried. The problem is that it is often voiced that the shutdown will continue ‘till the end of April – even May.
I’ve seen on Facebook the images of stationery (diaries, notebooks, pencils, pens, etc.) tied with ribbons to keep people from buying it because they are not ‘essential good’. It is a shame that kids can’t use it to write, paint and draw as well as students (even me because I need notebooks too). It makes me pissed-off. Many people buy beauty products at supermarkets: are they essential goods?
In the evening, I phoned Tommaso. Tommaso is a middle-aged man who participated in self-help groups for family carers because he had cared for both his parents affected by dementia. His father died last year, and his mother was admitted in a nursing home in the same period. He told me that now he is living with his mother-in-law and his ex wife. “They were restructuring the house but now it is all interrupted due to coronavirus so they came here with me and I’m living the same odyssey again…”. “You are a lucky man”, “Oh yes (laughing), she’s one of those who says ‘I would like to die’, and my ex wife hasn’t got patience with her so in the evening I’m exhausted. The group is interrupted now, and no, I don’t know anything about the others. I’ve tried to phone my mom because yesterday was her birthday and I’m a bit sad we didn’t celebrate together. They (at the nursing home, it is a private one) call you only if something bad has happened. I hope the virus won’t spread here as I heard happened in Piacenza [40 km from there] because it is like an atomic bomb!”. Then he said we need to change this individualistic society ruled by finance, we have to transform the Europe in a real United Europe (“Stop with the spread. What does it mean that my euro it’s better than yours??”). He concluded by saying that my generation has the duty to clean up this mess. “It’s a huge duty, it seems to me that it is better not to have been born: climate change, economic crisis, now a pandemic …”, “Yes (laughing), I’m part of the middle, wealthy generation between that of my parents, (the boomers) who lived the war distresses, and yours, who need to change all this shit”.
Today it was a quiet day. Nothing to write except from a call received from a home care worker, Anna and another decree of the Prime Minister. I have felt nausea all day, I didn’t want to read the news, check the media, the television. The decree was just a decree that tried to reassume all the previous ones. The Prime Minister rhetoric was full of numbers that lack meaning. Because we all know that no one is sure about a possible end of the lockdown, no one knows the real dimension of the economic impact even if we all know that vulnerable people (home care workers, disabled persons affected by mental illness, homeless) will lose most together with the middle-class (shoppers, artisan, etc). I hoped that the situation would lead to measures such the patrimonial tax or the end of European debt, but now I am not sure anymore.
Anna told me that social services (that employ her as a private professional) send all the home care workers a questionnaire to ask for a sort of reimbursement. In the next days, I will call one of the social workers responsible for the project. Anna’s employer, who is a post office employee, has benefited from a leave to assist her disabled son, but has decided to pay anyway Anna the whole salary for March and even April. Anna assured me that she trusted her employer because she is a respectable person, but I would like to hear from a state measure that will not leave home care work again on the shoulders of ‘kind-hearted’ people. There is still no state measure for them, and many associations and media are condemning that.
I woke up and I saw a text message from Ryanair: they cancelled my flight from Milan to Copenhagen on the 22nd of April, that I bought to come to a conference on social studies on chronic illnesses – ‘Chronic Living’ – which had been postponed to next year.
One of my Italian colleagues managed to arrange his travel to Italy from Indonesia, where he was spending some months doing his ethnographic fieldwork among Buddhist communities. He believes Indonesian government is hiding coronavirus cases. Yesterday, he talked with the Italian embassy, and they informed him of a flight which leaves next week, but it is not an easy travel because he will need to rent a car from Bergamo to South Italy, and then he will be obliged to stay in quarantine for two weeks. Alessia, another colleague, returned last weeks from Morocco after a sort of odyssey in which she stayed for two hours at the airstrip because police officers didn’t want passengers to get off the plane. She almost argued in the Italian embassy in Marrakesh because some people asked her why she had not returned before. Giovanni is the only one of my PhD year who is actually on fieldwork, in Senegal, and does not want to come back to Italy even if police officers officially stopped his research. Today, he told us that Senegal is in a better position than Lombardy, where he should spend the quarantine period, and so he prefers to stay there because he can still go out and chat with people. But I’m wondering what will happen if contagion starts spreading there also because he lives in an area that is far from hospital and medical equipments, and I think that we should stop thinking that this one is a disease of the West.
I usually spend the morning with my girlfriend in her room, and when we come to the kitchen to have lunch with her flatmates there was Fabrizia talking with her mother. She was telling she agreed with the idea of the Italian Foreign Minister, Luigi di Maio, that we should limit the possibility to return from abroad. I didn’t say anything.
I try to go ahead with my phone interviews, so I decided to call Marisa, who is married with an ex politician (Giorgio) affected by dementia. As usual, I asked her how she is experiencing this period and she replied that she is frustrated that her husband can’t understand what is happening even if they watched the news together every day. Giorgio and she used to watch and comment the news almost three-for times a day before the illness.
Today Giulia received an email with a seemingly official starting date of her nursing internship program (the second week of April), but the email didn’t say how this will be arranged. Fabrizia told her that she is in the third year now, so she should be autonomous and they need staff (as usual) but Gabriella and Giulia’s sister – who is a doctor – think that student insurance does not cover the risk of contracting the coronavirus. I don’t know how all these students will be able to start the program, there also many people who should came from different regions and cities. The train and bus services are restricted.
In the afternoon, I called Lucrezia, the psychologist of the Alzheimer’s café I had been attending for my research. She told that the situation in the nursing home where she works is better than others, where the contagion spread between workers and patients –“fingers crossed”, she said. They isolated only two potential cases that involved two workers who are in sick leave at the moment. The same agency holds the local adult day-centre and the nursing home, and they started mapping the most vulnerable situations of family caregivers or elderly who have no family network to rely on. One of the worst situation is that of a man that I know, Alessandro, who is stuck at home with his wife with a serious dementia condition. Lucrezia told me that they are using tablets to let the patients communicate with their relatives but it is an ambivalent tool: ““These are ambivalent tools; sometimes they only increase anxiety and fear, and also people with a serious cognitive deficit can’t use video calling appropriately, and they are of interest only to relatives, not to patients. I realized also that my mediation is fundamental, because I saw that people, whom I know had not previously accepted it and had felt guilty for having their loved ones in a residential facility, are now very worried: ‘Why does he look so pale? Oh my God he is sick, is dying!’. And I try to bring everyone back to reality”.
She asked about me and Giulia, I told her of the internship program and she said: “They are crazy. It is incredible. Why don’t postpone the program? Why arrange online exams now and do not postpone the program? I think we need to avoid all large gatherings of people, I’m sure they won’t do it… I think that Emilia-Romagna is doing good, and now it doesn’t matter if you vote left or right we need to collaborate together. But there also many jackals – the ones we know very well [she refers to Matteo Salvini, the leader of the nationalist party la Lega], who try to gain consent and votes in an opportunistic manner”.
Fabrizia has started to work again in the clinic. She told us that managers isolated the second floor of the clinic where she works because there are two patients affected by coronavirus. She said that, in theory, workers of the second floor do not have contacts with workers of other floor, but Gabriella said: “What do you mean by ‘in theory’? You must work in safe conditions for you and also for us.” Fabrizia tried to reply that she needs to work so she has got no choices, but I think she would have said that Gabriella visits her boyfriend almost every day – who lives about five minutes by walking from us – because she complained about it with me and Giulia in the past days.
It seems that in Italy there is a decreasing trend of coronavirus cases, but the national lockdown will probably go on.
Today, a civil rights activist shared on Facebook the request made by a Not-for-profit Parkinson’s association for a special unit for the management of chronic diseases (https://www.ilmessaggero.it/salute/storie/coornavirus_parkinson_speranza-5142373.html?fbclid=IwAR0jMDD1RWVUzpceFk6t3pfhDIZ58d7MEst5d5bcY1wpxJezVmYuWlWBDhA 01/04/2020).
The leader of this Not-for-profit association is a Bolognese neurologist (Emilia-Romagna) who is very popular with my interlocutors – and also widely celebrated. In the article, the physician calls for a special unit on chronic diseases in the Ministry of Health which should be able to make homogeneous decisions for the whole Italian territory, and then repeats his mantra that physical activity is essential for this illness and there are many exercises that can be done at home. His association started an online chat for patients.
The Prime Minister Giuseppe Conte postponed the national lockdown until the 13th April, but no one really believed that it would have ended before. https://www.repubblica.it/politica/2020/04/01/news/la_bozza_del_dpcm_sospsesi_gli_allenamenti_-252899965/ 02/04/2020)
He said he was sorry for cancelling Easter Holyday –“ which are very dear to Italian people”, and claimed that we are almost entering the phase two, “living and coexisting with the coronavirus”, then we will have phase three, “re-launching”. If the data on the decreasing trend of coronavirus will be confirmed after Easter Holiday, they will begin to reduce the limitations.
I remember what my uncle said one or two weeks ago, that in Italy we are very able in facing an emergency but very less in managing the reconstruction. At that point, corruption and bad governance usually spread.
Today I made a phone interview with Sandro and Granfranca. Sandro said that they still go walking around the house and he doesn’t want to leave Gianfranca alone. “If I meet a police officer, I’ll say that my wife has a precarious balance and is likely to fall often. Moreover, there are many rubbers and criminals who attack elderly people, so it is better not leave her alone – even if I know that probably I can’t make a difference”. They gave me news about Anita, a Moldavian home care worker who frequented Alzheimer’s café with her assisted one, Carmine, a retired engineer in a wheelchair with a serious Parkinson’s condition – he nearly couldn’t speak and move. Carmine’s ex-wife decided to put him in a nursing home and fired Anita one month ago. Now Anita is living with other colleagues and is seeking a job, Carmine’s ex wife refuses to give her news about Carmine. I liked Anita, she is a very pragmatic, ironic person who was rude and gentle with Carmine at the same time. I remember when I asked her “What do you think about home care training programs?”, she replied with a smile that: “You don’t need a certification to clean asses, Francesco”.
Many colleagues believe that it is difficult to make phone interviews, but I don’t think so. You can understand people’s emotions listening to the tone of their voices even if you can’t see them properly ( I don’t like very much video calls).
Today I talked with Ester, who is another frequenters of the local Alzheimer’s café together with her husband, Giuseppe, affected by dementia. She told me that her father died two weeks ago. He was affected by BPCO (Bronco Chronic Obstructive Pulmonary Disease Pattern) and had had his leg amputated. Before he died, the emergency unit went to Ester’s house and visited him. They told her that they suspected a coronavirus case because he had a little fever and respiratory problems. Ester asked them if he would have been able to come back home given the fact that he was very debilitated, and they answered that they couldn’t promise her. So she replied that she was against the recovery, “now more than two weeks have passed, so it was not a coronavirus case because I had not been sick and I used to be in close contact with him, washing and dressing him”.
She had to ask a special permission to police officers for attending the funeral because it took place outside her town. She was given the permission along with her brothers, but the ceremony was very short and police escorted them to control they were not going to other places. “But I do not complain, because many people didn’t even have that possibility. I feel sorry for them… Now I don’t have to care for my father so I have more free time, I wish to go to the senior centre because it has been a long time that I haven’t done anything for me. I hope that this situation will end soon… we live next to my daughter and her husband but we don’t meet each other because my daughter has to work and we’re afraid of the virus.”
Today I received an email from a colleague, a senior researcher who has been working on migrant care workers for more then ten years. I asked him to share some experiences on the effects of COVID-19 on care labour for elderly people:
Caso vuole che negli ultimi giorni anch’io stia vivendo un nuovo incontro ravvicinato con il mondo del lavoro di cura. Domenica scorsa, infatti, mia nonna (ebbene sì, ho ancora una nonna 92enne) che fino a quel momento viveva da sola in casa senza aiuti (vecchia tempra contadina) è caduta rompendosi femore e bacino. Portata d’urgenza in ospedale a Rivoli (provincia di Torino) è stata abbastanza incredibilmente dimessa il giorno seguente perchè l’intero ospedale era riservato ai casi di Covid-19…. quindi ora è a casa, seguita da un’infermiera, da mio padre e da un’assistente familiare cercata affannosamente dalla mia famiglia per tre giorni tramite un’infinita serie di agenzie, intermediari, ecc. ecc. Si tratta di una lavoratrice ucraina che è stata letteralmente trasferita in modo semi-clandestino da Novara dove si trovava perchè in tutta la provincia di Torino in questo momento complicato non si trovava nessuna persona disponibile per un lavoro d’urgenza… dico semi-clandestinamente perchè non si è riusciti a fare il contratto in tempo causa impallamento del sito dell’Inps il 1 aprile… quindi lei ha cominciato a lavorare e solo stamattina sembra stiano riuscendo a chiudere la pratica.
Ecco, questa è la mia piccola testimonianza in merito : )
Ciao, alla prossima!!
(It happens that in the last few days I too have been experiencing a new close encounter with the world of care work. Last Sunday, in fact, my grandmother (yes, I still have got a 92-year-old grandmother), who until then lived alone in the house without help (old peasant temper), fell and broke her femur and pelvis. Emergency rush to hospital in Rivoli (Turin province) was quite incredibly discharged the following day because the entire hospital was reserved for Covid-19 cases … So now she is at home, followed by a nurse, by my father and a family assistant who was frantically sought after by my family for three days through an infinite series of agencies, intermediaries, etc. etc. It is a Ukrainian worker who was literally transferred in a semi-clandestine way from Novara where she was because in the whole province of Turin at this complicated moment there was no person available for emergency work … I say semi- clandestinely because it was not possible to make the contract in time due to the INPS [Istituto Nazionale Previdenza Sociale – National Social Welfare Institution] site failing on April 1st … so she started working and only this morning it seems they are managing to close the file.
Here, this is my little testimony about it:)
Goodbye see you soon!!)
In the past days, the INPS website (Italian National Social Welfare Institution) wasn’t able to face all the online demands (which includes also the demands for the extraordinary economic benefits) and the Italian government has promised to solve these technical problems.
In the afternoon I called Carla, the social worker I’ve been working with for my research project on eldercare. She is the main responsible of a regional project that aims to qualify the private home-care work for elderly people. This project prescribes that social services provide training courses to home-care workers (that includes teaching by nurses, psychologists, psychiatrists, and employment agencies on age-related diseases, hygiene practises, use of mobility and daily living aids, and employer’s rights and duties); the trained workers are not directly employed by municipalities but they are indicated to the families by the social services, which manage and mediate the relationship between workers and families organizing also counselling office and self-help groups for both home care workers and family carers.
Carla told me that she has been overwhelmed by users’ demands. The situation is critical because many care workers who work by the hour are losing their job, while the live-in ones are isolated because they cannot go outside. “And the situation is worst with the dementia cases because it is hard (si fa fatica) to make people [with dementia] understanding the new rules. In many cases families have suspended their jobs or care workers [assistenti familiari] don’t go anymore because they are afraid of contagion. I’ve made a survey to have an overlook on the phenomena and to obtain a reimbursement for them, I hope. Among the 120 people who work with me, 48 responded. I’ve been asking everyone if they use masks and gloves, but in many cases the elderly families don’t give them or they couldn’t find them. Many workers are afraid of travelling because of police officers’ controls. I’ve shared the survey results to the labour unions and employment agencies I work with… There is this case: a worker stopped by the police. She is very accurate, so she took with her self-certification and also the employment contract, but the police officers complained because they said she needed also a special authorization of the municipality for travelling from a city to another one. I discussed with the travel unions and it is not true, so we have got also these abuses [smiling]”. She has got a widowed father-in-law who needs some daily assistance, and she had to renounce to a care worker who helped her and her husband for 5-6 hours at day. “We can go to him only one or two times a week, so he is alone”.
I called also Tommaso, (the middle-aged man who participated in self-help groups for family carers because he had cared for both his parents affected by dementia). He told me that they had just finished having a meeting with the help group on an application but they were few. It was a bit difficult because we are old people and we aren’t really able to adapt to all this technology … like people disconnecting, weak connection … But Carla [the social worker] didn’t say anything to you? The virus entered my mother’s nursing home”. “Oh, I’m sorry! “, “I told you that if the virus enters it is like putting a bomb in the train station … I don’t know much because I haven’t visited her since a month. I went on Tuesday after the first decree because I could smell that the situation would have changed soon but they didn’t let me in. I heard about the virus from the manager who called me, he told me there are three housekeepers at home on sick leave as a precaution, but I don’t know if all three have the virus. The director says he is struggling to have every employee done the swab but they can do it only to those who already have symptoms”. “Really? With all these asymptomatics around!”. “Exactly! Then an asymptomatic will infect you 50”. I ask him how it is going with his mother-in-law (she and her ex-wife have come with him since the beginning of lockdown) and she replies that it is very, very hard. “Because she is one of those people who always complains. Before this situation, we had applied to the day care center for some relief”.
I phoned Maria, the home care worker, who told me that this morning she went to her uncle. “Because apart from the coronavirus, assistance must be guaranteed for some pathologies. My uncle is accustomed to stay with me besides his partner, and he has a cognitive decline so he doesn’t understand the situation. Now it seems that with the new self-certification you can also move between the municipalities to assist an elderly relative, so last week I saw him more often. I see he is getting worse. This morning I managed to get a walker from a lady because I have many contacts with people I have worked with and helped, so now I can ask for help. A walker seems nonsense but it helps those who have mobility difficulties to walk more. And it’s good for him to walk and see other people. We also had the problem of being left without aids, we had to make an online demand but often the website is overloaded… At the moment I do not work, I’m thinking about those two ladies [she had taken care together with another living-in caregiver of two elderly sisters with dementia], the daughter is still stuck (she is in Paraguay and cannot go back). I have to get supplies for them because the home care worker cannot leave them alone even for one hour. And when she has to go out she must lock them in because there is a risk that they go out alone. So once a week I go shopping at the big supermarket that costs less, and the home care worker just goes to buy a few things at the shops near the house. It is a dramatic situation…Also because many families are afraid, the thing is that by the hourly job you go to many houses and many families and it is risky, and masks are difficult to find. I’m afraid for my uncle because coronavirus would definitely kill him. And we too are afraid to do this job… Civil protection and voluntary work cannot do everything, also because not everyone trusts them to enter their homes during this period because they come into contact with many people”. Then she talks about Alessandro’s situation: “I spoke to Mariagrazia who is a very good person, and we are worried about him. Because I know that he isn’t doing well, because Maria (his wife) is seriously ill, and I know he can’t do housework. He had a girl who came in the morning, woke up and dressed his wife, did the cleaning and then cooked something for lunch. I know they often went out to dinner because they are wealthy, but now everything is closed. Mariagrazia told me that she brought him food a week ago, so I thought that since he lives near me I can bring him some stuff sometimes and give him some advices. I hope he will be pleased because I am not very confident with him, and I don’t want that this turns into a full obligation because I must also take care of my uncle”.
I asked her about Carla and the questionnaire. “Carla knows that I don’t have a regular contract, but she insisted to put also my name, we hope for a refund for everyone. Do you know that I have been enrolled in the Employment Center since 2013 and they have never called me? Two days ago they asked me to go to work in an RSA [the Italian residential facility for people who are completely not self-sufficient]. Domestic care workers can’t work in an RSA. I replied: ‘Are you crazy? You never called me and now you ask me to go to an RSA without training, without preparation. I have always worked at home and it’s different, I’m not cannon fodder’! In the RSA you must be able to move fast and work in a unit. I told him not to contact me again for these jobs”.
Today, I decided to make a report on the situation of nursing homes, also because many of my interlocutors have got a parent or a spouse recovered there. The situation of Lombardy has been a great scandal, where the regional government proposed to send the Covid cases in nursing home. In many of them, there are many cases and many deaths among patients and workers. (https://bologna.repubblica.it/cronaca/2020/04/05/news/_le_case_di_riposo_sono_una_polveriera_50_morti_170_contagi-253179732/?fbclid=IwAR0Rcwr5gq4zHWBMuS1inFR1vLx0xMeKPoZy2JIJ6TlM8KSXR0ncpso2pPM 10/04/2020). I managed to spoke to an educator who works in a nursing home in Lombardy, because he is married with a colleague of mine in the PhD. Program. He confirmed the perception that elderly people have been put aside, and coronavirus hasn’t been detected seriously in nursing home. I realized that many adult day-care centres are trying to map the situations of their clients, making some phone calls as some nursing home are doing with elderly relatives (including the one of that educator), but many people said to me that it is something that can benefit relatives more than elderly themselves, and the psychologist Laura ( who works in a residential care facility and holds the Alzheimer’s café I had been attending before the lockdown) believed that it is an ambivalent tool, sometimes increasing anxiety and fear, and also that people with serious cognitive deficit can’t use video calls appropriately. “So people who previously hadn’t accepted that their loved one was in a facility are now very worried: ‘God is dying, he’s sick’. And I try to bring everything back to reality”. The residential care facility where she works has got only one case so far because the managers succeeded in taken preventive measures (such as using vacancy leave for people with suspected symptoms). Laura confessed that they are living a good situations compared to what she heard from other places.
The nursing home managers publishes daily videos on the Facebook page documenting conversations between relatives and patients (I do not report it to protect my informants). The interest thing is that these videos are sponsored as a way to hold ties and relationships between relatives and patients: beyond rhetoric neither managers or Laura herself mentioned her doubts and reflections on those practices.
Giulia received an email from the university: the nursing internship program is officially suspended at the moment, probably until the end of May, she has more time for preparing her online exams. I remember that at the beginning of the crisis some of her professors didn’t want to suspend the programs even if the university had officially suspended the activities for students. This is probably due to the fact that nursing students served as free workforce for understaffed hospital units. I spoke with Lucrezia, who is another care worker employed in the social services’ program for home care services to elderly people. She suspended her work in March. She was paid for the first week, in the second one she benefited from paid vacancies, in the third she lost salaries. She said she is not going to search other job also because she is afraid for her mother, who needs some assistance from her. After the call, I decided to check how private home care work has been discussed in the media. National newspapers have dealt little with this subject. ll Messaggero reported the declarations of the leaders of some associations of domestic care work : the president of FIDALDO (Federazioni Italiana delle associazioni di datori di lavoro domestic Italian Federations of domestic care work employees) claimed with satisfaction that many families are turning their once irregular employment into a regular one, while the president of ACLI-COLF, which represent the workers, complained that around the 60 percent of domestic care workers lost their job. The undersecretary of the Economic Minister promised that a new decree in April will solve the situation of many workers left without any help from the government.(https://www.ilmessaggero.it/economia/news/coronavirus_italia_colf_badanti_contributi_cig_inps-5155826.html 10/04/2020) At the beginning of the crisis, the most important Italian economic newspaper, Il Sole 24 ore, reported that the leader of ACLI-colf specified that the national lockdown didn’t stop the domestic care work, and hoped to guarantee assistance only for non-self-sufficient elderly people(https://www.ilsole24ore.com/art/non-si-ferma-lavoro-domestico-ADpFvGF?refresh_ce=1 10/04/2020). More recently, the journal criticized the government measures taken to face the crisis, judging them insufficient to solve the situation of rents, mortgages rates, and also domestic care work: only a small percentage of families (13%) decided to pay the entire salary for the suspension period, more frequently they choose to give them vacancies (35%) or an unpaid permission (9%). (https://www.ilsole24ore.com/art/dal-cura-italia-primi-aiuti-famiglie-misure-ancora-deboli-giovani-e-anziani-ADpsHvH?fromSearch 10/04/2020)
Easter is coming. Fabrizia, Gabriella, and Giulia decided the lunch menu for Sunday, and Gabriella went to buy groceries. She said that the supermarket was crowded like the street around. We finally got the masks my mother gave to me and Giulia because she was worried about us – as usual; so we went from having none to having plenty of these. She worked as a cook in a restaurant that is closed now. Today she explained to me that she received a deposit of her salary for March. In past days she complained about her employer who did not answer her messages and requests (for being paid), but just yesterday she ( her employer) said that she can pay only a deposit for the moment because she needs to pay the suppliers and loan instalment. She said that she received threatening messages from her employees, something that my mother disapproved and also I felt little compassion for her – after having spoken bad about how she behaves as an employer: “She told me that firstly she had been seriously affected by the situation and felt she could not be able to handle the situation, but then she started reacting. Maybe she did wrong because she should have told us the situation immediately, but you cannot send threat messages, and for what? “. I agreed with her, and I think also that we need government aid soon. Very soon. I’ve always considered myself as belonging to the left wing like my mother, my father, and my brother, but her employer is not the manager of a great company, she is just the owner of a restaurant-bar in a mall. My older brother spoke badly of her too, considering the employer as an exploiter for delaying the payments. He works as a financial agent and my father too. Both have been working in this period and sometimes I was worried for my father (He is 65 years old), as my brother said: “Financial capitalism never stops”. He would have preferred staying at home.
Later on that day, the Prime Minister postponed the end of the lockdown till the beginning of May, specifying that some activities (e.g. libraries, shops for children) will be able to open again in next weeks. All these decisions seem very weird and casual (the decision to close or not close and what). He also criticized the opposition right-wing leaders, Giorgia Meloni and Matteo Salvini, because they spread fake news about Italy signing the MES pact, and then as usual he made appeal to the spirit of community and self-sacrifice. He said we’re entering the phase two, living with the virus, because the contagion is decreasing.
My mom called me today. She has discovered that Fabrizia works in a private clinic: “I feel sorry for her… but you know she is at risk! If I had known I would have said to both of you (me and Giulia) to rather stay in Bologna [in my room – my flatmates had come back home]”. We discussed a lot about this, in the end I managed to calm her. “Ok dear, but try to stay away from her! From the kitchen, the bathroom”. “Mom, how can I stay away from her? We live in the same house. We go to the same bathroom, we use the same kitchen”, “ok but you better watch out!”, “yes, mom. I do”. As usual, she asked me when we will meet again.
There have been many controversies about the Prime Minister’s attack of the opposition. A famous Italian journalist, Enrico Mentana, criticized the Prime Minister for having used the institutional discourse to move a personal attack to his political rivals (https://www.liberoquotidiano.it/news/personaggi/21947225/enrico_mentana_giuseppe_conte_discorso_se_l_avessimo_saputo_non_avremmo_mandato_onda.html 11/04/2020). The opposition leaders spoke about “dictatorial and socialist control”, promising to speak with the President of the Republic https://www.ilmessaggero.it/politica/coronavirus_salvini_melone_conte_regime_tracotante-5164813.html 11/04/2020). A lot of friends of mine (left-oriented) believe that the oppositions’ leaders are just hypocritical because they have dominated the media with their speech and their liars. It seems that the consensus of the oppositions is decreasing, but at the same time the central government is weak in respect of the power of the regions. Many Italian intellectuals, as well as anthropologists, talk about a “state of emergency” and criticize the way the central state is gaining power and limiting individual freedom with the rhetoric of “doing what is necessary” to face the emergence. The philosopher Giorgio Agamben is one of these, one that also neglected for a long time the pandemic – even if many anthropologists do not recognize this negation, but their argumentations are based more on his intellectual reputation than on the logic. It is certainly true that saying that a phenomenon is a social construction doesn’t mean that it is false and illusory, even if the boundaries between the two things have always been a matter of concern for the social sciences applied to health. But if you compare a pandemic to a normal flue, I ask: where are the differences? (http://www.treccani.it/magazine/atlante/cultura/Storie_Virali_Sul_contagio_di_Agamben.html 12/04/2020). Quandoque bonus dormitat Homerus, (sometimes even the good Homerus is wrong), I would say. I’m among those who believe that, at least in Italy, this central state is just an illusion, and we are witnessing on the contrary a weak state that is not able to rule over the regional governments, which have acted in very different ways so far, and it is also not able to control all the national territory. Even Giuseppe Conte himself (the Prime Minister) admitted that he couldn’t advocate all the regional responsibilities because regions have a rich information heritage that central state doesn’t have. I also believe that I do not care about the way the government and the oppositions are contending for consensus, appearing as much as they could on televisions and newspapers (as they have ever acted); I care more about government aids and economic measures for workers and families. A lot of promises and many decrees, but we haven’t received aids so far.
Today, I made another interview with Marcella, who is the wife of a person affected by dementia and one of the people that frequented the Alzheimer’s Café that I had been visiting for my research. Her husband was a local politician, member of the Italian Communist Party which no longer exists, but she still reads Il Manifesto, that ones was the newspaper of that party and where Agamben usually writes. She read the famous interview with Giorgio Agamben on the Covid-19 and the “State of Emergence”, where the philosopher claimed that the Covid-19 was just more of a normal flue and that it affected only elderly people (https://ilmanifesto.it/lo-stato-deccezione-provocato-da-unemergenza-immotivata/12/04/2020). He received many critics for that words, also on Il Manifesto itself. After the interview, Agamben said that the journalist misunderstood his words (https://www.quodlibet.it/giorgio-agamben-chiarimenti 11/04/2020) , but he continued with the same line of thought: State is sacrificing individual freedom of mobility with the excuse of protecting nuda vita (naked life) of citizens, bio-politics and medicalization triumphed over all other politics stripping life of its social and cultural meanings, so remedies are worst than the disease itself https://www.quodlibet.it/giorgio-agamben-una-domanda 11/04/2020). Me and Marcella discussed about Giorgio Agamben’s thought, and Marcella said: “It is said that we all stand by philosophers and thinkers for revealing worlds and thoughts, and then they say things like that”. Maybe she didn’t like the way he spoke about elderly sick people because her husband is one of those and she is the one who cares for him. It is not about avoiding critical thinking, it is about having the sensation that he is just another member of the élite who does not care about peoples’ safety in the end, who does not care about people at all. Quoting the Greek tragedy, Antigone, or Manzoni’s and Boccacio’s stories on plague does not change the state of things, that is, a too easy way of seeing. The only freedom he stood for is that of mobility, he didn’t spend a single word on vulnerable people, for their economic and social rights, neither he recognized that a pandemic is a serious problem and not a mystification of the medical power. And for this reason, he has lost the contact with many of the ordinary people as many other Italian intellectuals. Maybe it is the time that Italian Academy should stop celebrating Foucault and start reading other things – also try to select articles not by (their) name.
There is also cautious optimism that the situation is getting better, I can hear it in the media discourses and sometimes in my friends’ messages, but also a huge fear about how to deal with the economic crisis after the emergence will pass away.
Easter has come. We have celebrated with a traditional Italian lunch, consisting in ragù, involtini, and Easter eggs we bought at the supermarket. In past days media have launched alarms on police controls for Easter holidays, with mayors worried about violation of the national and regional decrees. Gabriella’s boyfriend has joined us “clandestinely” today. He has been living alone because all of his flatmates went away two months ago when universities closed for the first time in Emilia-Romagna, before the first national lockdown. He is from Veneto, and he thought of coming home at the beginning, but before he came up with a decision a new decree prevented people from returning to their residences. And that because in Italy we distinguish between the house where you live (domicilio) and the house of your fiscal belonging (residenza).
Many media reported the “escape” of students from Northern Regions to Southern ones, but the reality is that this “escape” started long before the national lockdown in March because many decrees closed universities and schools in Northern Regions at the end of February. For example, my flatmates in Bologna went back to Puglia (where they come from) at the end of February. I’m also thinking about how this isolation has paradoxically strengthened the relationships with Giulia’s flatmates. They couldn’t stand much my presence in their house before this period (also because they wanted Giulia to spend more time with them), but now I feel that things are changed, and we live together without too many problems.
Today I was contacted by a representative of a mixed PhD course that include Anthropology and Urban studies. And that because I have got the bad luck of being the representative of my PhD course in Anthropology. He wanted to discuss the way my department has been dealing with this emergency. He thought about using department funds (research grant increase for visiting periods, reimbursements for conference taxes, travels, exc.) to cover the extension of PhD. programs in Italy. In the Italian Educational System the PhD lasts three years and is probably one of the shortest in Europe, if not the shortest at all. And that is part of the problem because many people had to interrupt their research activities – which are usually done in the second year and at the beginning of the third for many of the few anthropological PhD programs remained. It seems that the Departments decided to give the possibility to postpone the thesis delivery, but without any economic coverage, of course. As usual, there is nothing we can do and because PhD students do not have great political power in the Department – as the Italian PhD students’ association (ADI) in the Educational Ministry. It seems we can only wait for a Ministry decision.
I asked him if he was doing telephone interviews, he said that he prefers to stay on the field, but if the situation continues he will adapt himself to this method – the same answer as many of my colleagues whom I asked the same question. I think that for many people interested in visual ethnography it is a serious issue, but I also think that in my situation, like many others, a telephone interview is just an interview: I ask people to share with me life stories about caring for an aged person. They told these stories on the telephone instead of speaking in front of me. In many cases, caring for a family member – or working as a domestic care worker – does not leave much free time to spend with an unknown researcher. For example, many people have done their research on care labour using emails, and that long before Covid-19 spread. Many people I have come to know reminded me that they lived almost in isolation also before the Covid-19 emergency, and also because their relatives and friends mysteriously disappeared after illness had come. Using the telephone is an option for saving precious time, and in this isolation period a phone conversation can also become a ritualized practise that helps to spend some time in moments of pause – for example, when the person is sleeping in the afternoon or is with the domestic care worker in the morning. It is also an option to keep in contact with the people among whom we study. It is the way we use the research tools we can rely on to define what ethnography is and not the other way round.
Today I managed to talk with Gregorio, 70 years old, who is the coordinator of a Parkinson’s Associations of Emilia-Romagna. Gregorio is the example of what an ‘expert patient’ is and the manifested symbol of ‘active aging’: he attends several webinars of the Michael J. Fox Foundation for medical research on Parkinson’s disease, he collaborates with local neurological research institutes, he is well informed on the benefits of physical activities and good alimentation on Parkinson’ diseases, he founded and manages a Facebook group that aims to share informational and personal stories on the disease.
He told me that he has always been convinced of the necessity to develop a culture of technology and digitalization among elderly, and now believes that the pandemic has made even more visible that necessity. He is not worried about police officers control because he always brings a medical certification that prescribes physical activity and movement. As usual, he stated that he fights against depression and anxiety keeping his mind trained (he follows online courses of Japanese language, reads several books…) and he does not suffer so much the isolation period. But he recognizes also that he can be “lucid and objective” because he is a pensioner and does not have to worry about economic problems in this crisis. We discussed if someone can do special physical exercises for Parkinson at home without a professional expert: he believed that you can do something to some extent, but depend also on the severity of the disease and on the capacity to use technology for following some online demonstrations. Also because doing wrong exercise can cause harm as well as not considering body limits, or “acting as if you were a superhero”, as Gregorio says. it also depends on your individual willingness. He is a strong supporter of individual willingness and responsibility (as well as to empower patient knowledge and perspective) as the best way to act and intervene on the disease. I’ve come to respect his belief and his activism in the course of my research.
He confessed me that Parkinson’s associations are considering to ask local healthcare units to open ambulatories and home-care services at least for the non-self sufficient people. “But you know, they always quarrel among themselves”. Associations have tried to support their patients answering their requests and questions by phone or online, “but solidarity and support have been done in a non-institutional level, as always in an…” “informal level, so it depends if you have a friend, relative or if you know someone you can ask him a favour”, “yes”.
I called Riccardo who is another person dealing with the Alzheimer’s disease of his wife. He told me he can’t get used to the new laws of isolation. “I’m like a fighter and I usually try to react to the difficulties and troubles, but this is an invisible enemy… you can’t fight with it neither find a sort of compromise how it should be in the human nature. I can’t stand the idea that I have to walk away if I meet another person, that we can’t shake our hands”. He is bothered by some police officers: “I heard at the television that a man was fined because he was walking around his house even as he brought with him medical certification for rehabilitation therapies… I do not trust those who say that they get used to the isolation”.
Last week the Prime Minister announced Italy has begun to deal with “Phase 2”: living with the virus”. This means that the Country has reduced the limitations on mobility and some commercial activities will be given the possibility to open again. There has been numerous critics and ironic commentaries on the social media for the attribution of the word “stable relationship” that the government used in the decree that allows people to travel and meet their boyfriends or girlfriends.
I discussed it with Tommaso today. He was still worried about his mother who lives in a residential facility affected by the contagion. The staff has kept him informed about the situation on a regular basis. He was also worried about the situation of his ex-wife and her mother because they didn’t know when they would be able to come back home: there was still many uncertainties about the start and end of renovation work. “My friends also ask me about going out for a walk as we used to in the past, but it is forbidden to meet friends, I don’t know why because friends are more important than girlfriends, boyfriends or even relatives [laughing]”.
I’m worried about Adriana. Adriana has been her husband’s carer since he was diagnosed with early-onset Alzheimer’s four years ago. Like many others whom I spoke to in these days, she believed that forced isolation worsened the health conditions of her husband:
“It is not that we used to go out a lot but we used to do little things such as going for a car ride. Once his crises were rare but now I see they are frequent. This morning was very hard, now he is with the assistente famigliare [home care worker]: she was very good, she handled the situation making him doing some works in the garden. Maybe I will go for a car ride again and I want to speak with Laura [the psychologist of the Alzheimer’s Café], ask her if she has some advice because I miss the Café. Do you think I can call her? I don’t want to look for another psychologist because I should start again telling our story from the beginning [laughing nervously]”.
This issue has been addressed also in the national media. For example, La Stampa, one of the most popular Italian newspaper, reported the effect of dementia on patients stressing the importance to provide support for family carers). The article quoted from an interview with the director of a neurogenetics center in the South of the country:
“I am concerned about Alzheimer’s patients for whom not being able to go out for the usual walk can mean an increase in anxiety and therefore a worsening of their health. In addition, the closure of health and social care places, such as medical clinics, Alzheimer cafes and daycare centers, means that the care of patients seriously affects their families who, without those few hours of relaxation, cannot recover the physical and emotional energies to support patients, with the risk of increasing behavioral disorders not only in the patient but also in the family members themselves. A vicious circle that must be avoided by helping caregivers: numerous health structures and voluntary associations have expanded assistance via the web or by telephone and some have lines dedicated to the psychological support of family members. It is a disease that affects the whole family and impacts the lives of all family members. In these quarantine days, patients forced to stay at home can become more agitated, aggressive and therefore more demanding” (https://www.lastampa.it/salute/2020/04/29/news/coronavirus-le-difficolta-dei-malati-e-dei-caregiver-durante-l-isolamento-1.38745276 04/05/2020. There is also a local newspaper in Emilia-Romagna, Bologna Today, which reported an interview with a psychologist who worked in a residential facility. She stressed the idea the elderly people and their carers, especially in the case of those affected by neurological diseases, are among the most vulnerable subjects in the period of forced isolation; she gave also advise for carers such trying to be empathic with them, avoiding reading news several times a day, trying to maintain a normal routine of day and night, making video calls with relatives and friends, asking help to health professionals:
“Working online was a new challenge for me, and also for the patients. The main differences are the change of setting and perspective: I see people in their homes and not in my studio; I mainly see their face instead of the whole body. The online mode has advantages and disadvantages . Listening to the stories of my patients, I noticed that almost everyone talked about the way they were concerned for the health of their dear elderly, grandparents or parents. A concern often reported to me was the low perception of risk by the elderly, with consequent difficulty in communicating to them the correct behaviors to be taken to limit the risk of contagion. Because? They often have less access to sources or less understanding of such a complex phenomenon due, for example, to low schooling. Furthermore, the coronavirus is an invisible enemy and for this reason it can lead to a perception of risk that is too low or too high. It is important to try to explain this situation to the elderly, trying to maintain an empathic attitude and using simple language and repeat if it has not been understood. In emergency situations, everyone puts in place their own resources and ways of dealing with stress, however there are more vulnerable sections of the population, such as people of a certain age. In this pandemic, it was immediately clear how older people were the most at risk of getting sick, but it is important to remember also, in addition to physical health, the pandemic can have a strong psychological impact on the elderly or can exacerbate psychological disorders or pre-existing psychiatric conditions”
In contrast with these representations, there is also some thoughts and reflections shared by a local carer association in Emilia-Romagna. In the text there is the voice of a family carer who talks about the capacity to endure and deal with serious difficulties that family carers learn to practice in everyday life:
“We caregivers are used to living in the absence of the essentials, and to living daily conditioned by physical and environmental limits, including wheelchairs, breathing and / or power supply machinery and architectural barriers of all kinds. Not to mention the thousand struggles for the essentials (prescription of aids, booking of medical visits, drug treatments, support at school, etc.), and the connected thousand unnerving bureaucratic files. I like to imagine that they can be useful to all these laws, at this moment in which we find ourselves disarmed against the coronavirus. Not because our problems outweigh the problems of others! I absolutely abhor this kind of comparison. Instead, I say this because our problems make us understand that human resources are far higher than we think we have. And where sometimes many stop, there is an alternative road next to it, that road that we caregivers use to travel practically every day. Caregiver becomes by chance, and in a very short time this role pushes a family member (or more than one) to become an expert on the problem that lies ahead, on the management and care at 360 degrees of the loved one. Not by choice, but simply because the family bond pushes you viscerally to do it. All of us, individuals of the Italian people, in this moment of our life are experiencing a similar situation from north to south, from east to west, it is an emergency situation, unexpected and on which none of us have previous knowledge. We all find ourselves fragile and subject to events caused by force majeure. What is happening is something that has imposed itself, and that nobody has prepared us for. A situation which we must face finding in some way the resources to react. Exactly what we caregivers have experienced since disability has broken into our lives, and accompanies us along the way alongside our beloved family members. Unfortunately, we know that negative things do not concern us until they touch us closely. In fact, becoming a caregiver shows you a world that you did not know, or that you had only seen to a small extent if you are a particularly empathetic or sensitive person” (http://www.informareunh.it/le-tre-leggi-dei-caregiver-che-sono-daiuto-nellepoca-del-coronavirus/?fbclid=IwAR345EMPMcaYipp6X-9c3jsoH386-BjJnJ-9TXXFzcorL8RbaUemUxkynUc 04/05/2020).
Also Laura (The psychologist who works in the local residential facility and in the Alzheimer cafè) released some thoughts about her experience aiming to speak against the dramatization of the effect of the virus among the elderly people, as she told me after sharing the interview published in a local newspaper (which I do not report entirely to protect her identity):
“The fact of having identified a majority of positive effects compared to the negative ones denies one of the most widespread stereotypes about seniors, that of a lesser ability to cope with changes. This is a scientific fact. Our ability to cope with events and adapt to new conditions can improve over the years and it is as if we become increasingly resilient, contrary to what we imagined. A psychological force and creativity that exist but which we often do not consider. There is a greater awareness of everyone’s individual role, responsibility for collective well-being, for example also in compliance with the rules of hygiene and protection that this pandemic has imposed on us. The elderly in the structure are not obliged to wear masks but someone asked us to wear it hearing the news on TV. One of the positive aspects found is that this quarantine is seen as an opportunity to reflect and dedicate oneself to things to live from now on, such as family relationships. In general, we do not tend to attribute this attitude to an elderly person. Yet … “Even on this stereotype one must repent, the elderly are generally attributed a certain resistance and almost rejection of the technological medium, while I guarantee myself apart from the initial amazement of seeing loved ones on video, a great capacity for adaptation and satisfaction. Even two ladies equipped with smartphones have independently enhanced their use through video calls and social networks. Therefore, older people are more connected and happier “.
Her idea was that of giving positive thoughts about elderly people, stressing the fact that old-age is not necessary an age of anxiety and giving up. Rather, old-age can also be a life-stage of resilience and positive attitude.
This my last diary entry. Corona diaries are coming to an end. I wasn’t able to respect the short deadlines and I’m writing this for the first time since two months. Other businesses and commitments obliged me to do so. I also don’t know if I wrote a diary that the editors expected. I tried to provide my account of my own environment but I also refuse to call it something like “auto ethnography”. I share Ingold’s (2015) idea about auto ethnography: it is not ethnography. I think it is very simple to say but the truth sometimes resists polite languages and democratic balancing between opposite sides.
I tried to investigate how other people were experiencing the same phenomena and temporality I was living from different angles, and I tried to understand what I was experiencing thanks to others’ experiences. For me – and more important, for other people more experienced than me – this is ethnography. In these months, we have witnessed the flows of personal accounts on the pandemic everywhere. Maybe too personal. Pandemic should not be a reason for everyone to provide personal master explanations of social theory that lack empirical data and references from other studies, but that is just how it was in many cases, unfortunately. There is one reason for what we should not rely totally on one’s experience without connecting it with others – whether the researcher’s one or someone else’s: it is never so important, it is never so unique. I believe that the pandemic has taught us another lesson, even if I’m not one of those who are optimistic about the way this pandemic will ameliorate our social life, reduce the historical inequalities and give a better future to mankind and the global environment. I’m thinking about the Italian academy, and the way many of those have tried to defend a prestigious thinker, Giorgio Agamben, who recently spoke against the totalising power of digitalization from an online blog. The same scholar has been saying that the measures to contrast the pandemic were worst than the pandemic itself. Some would say that this is being a “radical thinker”, and the elite of Italian medical anthropology would say that we need to defend Agamben from criticism and attacks if we want to defend social scientists’ rights to have some authority in the scientific knowledge on the body and health against the totalising power of bio-politics. But it is interesting to see the similarities between what the Italian philosopher said and the claims of political leaders, as Johnson, Bolsonaro and Trump, who negate – or at least, try to dismiss – the virus. So it is rather a question of interest, political and economic interests than a question of “radical thinking” and freedom of speech, and too often we pass off issues that are of anthropologists’ interest – or to put it better, that are of interest to an anthropological academic elite – with issues that are of public, global interest, such as social justice, climate change, etc. We need to give up this rhetoric and engage in making serious ethical reflections on the methodological consequences of the pandemic for anthropological work. This concerns not only how to spend the works on the pandemic, but also how works on the pandemic have effectively been produced in anthropology. We need an ethics of disenchantment that allows us to investigate life without being too fascinated by its “dark side” (Ortner 2018), too obsessed by the “applied side”, or just without cultivating all these ambivalences that we seem to like too much (Kierans, Bell 2017).
Coming back to “diary in a strict sense of term”, I have some things that I would like to report before this diary ends. I moved to my parents’ house: Italy opened again its internal borders, and I was able to move to another region to pay a long visit to my family one month ago. Then I came to visit my girlfriend, one week ago: She came back home from the South of Italy from her family, too. At the beginning, I thought that people seemed to care less about the contagion and the safety measures – wearing a mask, keep the social distancing – because the Northern Regions have been the most affected by contagion in Italy – and among the most affected ones in the World. Then I realized that people were just less scared about the virus and maybe more tired of it. I’ve also struggled with my family because sometimes they believed that I wasn’t giving enough attention: maybe it is also me who was less scared of contagion. And also my older brother reminded me that they were “old” and we need to care about their health.
Apart from these, this story is very close to many others I heard about: also Giulia’s older sister has been very strict with her father and her mother, and Giulia – whose parents are of the same age as mine, around sixty years old – and sometimes she complained about inattention to safety measures.
Last week, I called Lisa the psychologist of the Alzheimer’s Café: she said that maybe she will not be able to organize an online Café due to economic and bureaucratic constraints but she asked me to keep the secret from the others. She also told me that she had to thank me for all these calls and attention that I had with the members of the Café; it seemed that they appreciated it: “it was a cute and kind act, apart from your research interests”. Honestly, I don’t know how much it was an disinterested act but I’m sure that ethnography is quite similar to what happened during meetings at the Café: it is about sharing private experiences, finding unexpected similarities and trying to make sense of feelings and perceptions. And this is good for wellbeing in the end, even if it is a struggling paradoxical process and maybe it will not solve the overall problem – just like an Alzheimer’s Café –: it still can give us the ability to endure the problems and sorrows of daily life (Kleinman 2013).
In the meantime, news flow in about new cases of contagion registered in all parts of Italy, https://www.tgcom24.mediaset.it/cronaca/coronavirus-contagi_15721188-202002a.shtml 29/06/) , https://www.repubblica.it/cronaca/2020/06/27/news/coronavirus_8_decessi_in_24_ore_e_il_dato_piu_basso-260358952/ 29/06/2020). The articles oscillate between apocalyptic vision and optimisms and we still don’t know what the future will reserve to us. There are still many questions and issues to be explored. Maybe it is a good and right thing that this diary stops here: it was born amidst the uncertainties and it will close amidst the uncertainties.