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  • Antonio was ill for a long time. He had Hepatitis C in the advanced stage which meant having also, as a consequence, liver cirrhosis, complicated by liver cancer. Contrary to what would seem blindingly common sense, the cancers he had, plus the underlying disease, were factors against him getting a transplant, not for.
    I
    ndeed, as his condition worsened, as it was bound to (the virus is just that, virulent; the liver tried to regenerate, but did this in the form of more cancerous cells) the chances of transplant became ever more remote.

    Three months before he died (in Padova chasing yet again the hope of transplant) all his symptoms revved up in intensity. One of these symptoms, hepatic encephalopy was particulary awful for us all, friend included but particularly for our Sons 1 and 2. Seeing their father conversing intently with people or things that no one else could see, and not recognizing them, his own sons, was very difficult to bear.

    So in those bad times I would try to ‘imprison’ Antonio. Confine him to our room. At least, for the time necessary for the boys to be able to do what they had to do in some sort of peace. I cannot emphasize too much how awful it is to see one's father, one's husband, intermittently and with little warning suddenly become a prisoner in his own mind, a sometimes terrified hostage.

    I had great help in these times. Not family, because both our families are far away from Sardinia where we live. Friends of ours here. These were people that had to be acceptable to Antonio. Even in his least lucid moments he was still strong-willed enough to demand a say in who was to be around him. These basically boiled down to two: Hannah, a Polish friend, and Virginia, a Sassarese.

    Male friends – and I say this without casting aspersion in any way – were pretty hopeless at meeting the challenge of this ‘new’ Antonio. They were good at other things, ‘though. Ricky, to give just one example, was great at taking the boys out bowling, or whatever, just to distract them a bit from what was happening at home.

    In his bad times, he would not recognize the boys, as I’ve said, but he would definitely recognize me. I was the Wicked Witch of the Wild West (click on About for a photo). I was the one who would peremptorily interrupt those one-sided dialogues in order to perform procedures - one in particular and which I shall not go into detail about: enough to say that no wife should have to do such things because you become a wife no more.

    And again, I was the one who was responsible for him having to come to himself on a ward, with no memory of what he'd been doing or what had happened to him. And his shock and confusion at these times will always remain in my memory. I will always, so long as I live, feel guilt at having to take him away from our home where at least he could move around freely, with me beside him. he could come to rest on the sofa and cuddle up to Star. But often, all too often, he was at risk of doing harm to himself. And that is when I would have to call the Emergency Services and deep inside him there was hatred of me for that.

    You are probably asking yourselves, "Why this reluctance to go hospital"

    As I had cause to say to the personnel at the Padova University College Hospital, the majority of doctors, nurses, and auxiliary staff in the two main hospitals here in Sassari do miracles, with resources as stretched as they are.

    Then there's the little point of administering a national health service. It’s just not right that a doctor, practicing his profession, has also to be an administrator. The two just don’t mix. When a doctor has to give priority to a workshop on fire drill safety measures over a meeting with a concerned family member (me in this case) it's just not right. Then there's the fighting against the sad fact that a lot of lower level appointments – the people who serve meals, for example – are jobs granted for votes at election times and these people have no love for the job, and seem at times to do all they can, out of sheer cussedness, to make life hell for patients and doctors alike. And finally, and to top it all is the chronic shortage of beds for the two main hospitals serving an extremely large part of northern Sardinia.

    To a patient of Antonio’s type, going to hospital through the Emergency Services meant he could not be guaranteed a bed in the Clinic that had him in its care, under the doctor who was following him. It meant the possibility of ending up in wards elsewhere, not suitable for a person in his condition, or in others, like this one:-

    -- calm down dear we're in hospital oh fuck stomach cramps oh fuck I can feel blood coming out of me oh fuck my period shit shit shit no pads no tampax "Excuse me, I have to leave my husband now just for a moment I've got to find some pads, my period has started" running out colliding with The Director "Oh no, you can't leave the patient we don't have the staff to take care of him, we'll immobilize him" "nonononononono....I'm just going to the lavatory, I'll be just a moment" and I'm running down the corridor asking everyone I see if they've got a sanitary pad 'cos in Italian lavatories there are no tampax dispensers and an auxiliary pops her head out of the staff kitchens and I ask her and she gives me something I cobble together with the tissues in my bag and I run back and holy shit there are two people done up in something out of X-Files' Station Area 51 in anticontamination overalls and masks and gauntlets and my love is trembling and getting more agitated and trying to speak but the words oh the words won't come and struggling against them "The patient is not collaborating" and two old people in the neighbouring beds are terrified and they've got ropes fucking ropes "What are you doing?!'?!" "We're immobilizing the patient because he is not collaborating" and they're starting to tie him down tie him down and he's struggling and I'm screaming and screamingandscreamingandscreaming and "You're frightening all the patients, get a grip on yourself we're calling for The Director" "What do you mean I AM frightening the patients you evil bitches, get your fucking hands off him, get those fucking ropes off him stopstopstopstop" and doesn't The Director come with a little entourage of fawners and tries to hussle me out and I'm hissing at him "I told you not to tie him down. I told you. I told you." "We have to immobilize if the patient is unaccompanied." "But he IS accompanied." "We have to immobilize..." like some stuck record and the two Area 51s are still working on the ropes and I grab a plastic knife off a bedsidetable and I start sawing at the ropes on his wrists and " He IS accompanied. He IS accompanied." so The Director calls them off and he is quiet now and just to get them away so I leave the rope around his chest in place and a nurse on a later shift "What were they thinking of? The rope is too high up, it's constricting his breathing for God's sake." and whyohwhyohwhy didn't I see that...whyohwhyohwhy------

    Let's get back to the symptoms of hepatic encephalopathy. Another important symptom is disturbance in the Circadian rhythms of sleep where: daytime = awake, and night-time= slumber.

    In Antonio, this disturbance progressively worsened, in parallel to the progressive worsening in his general state. For the month and a half before his death, he was practically bed-ridden (although independent enough, at home, to go the bathroom alone, and it being without a lock because we'd never got round to putting one on on account of the children I knew I could get to him if he needed me). Most of the time he slipped in and out of sleep, over the course of the 24 hours. But when he came to, he needed company. Then there were the times I had to get him conscious enough to take his various pills, laxatives, and do those procedures I mentioned before.

    Night-time though was the worst for him. As the sun went down, he would get more agitated, even in his doze. Reading, for him at this time, was out of the question. Being read to was abhorrent to him. It made him feel like a not-51 year-old-sentient adult, like a not-my-husband. TV became a source of irritation: he completely lost interest in the political debates that had been his gristo.

    So, we were left with the computer. And this was when I took up Facebook again. We’d laugh at the idiocies of some contributions, seriously consider others, chat to far away friends, or just take a look, secretly, at what everyone was getting up to.

    When he fell asleep, however, during those long, long nights, were the worst times for me. My eye-lids would become leaden. The desire for sleep would become overwhelming. But I knew I must not, I could not, fall asleep. If I did, it was very likely that I would come to, with a start, to find Antonio no longer by my side. I’d find him in the kitchen maybe. Sweeping the floor. Not with a broom, no, but with his bare hands, and on his hands and knees.

    You are probably wondering how I managed then. The effects of sleep deprivation are well-known.

    The answer is that I managed on catnaps. For example, when the nurse came to hook Antonio up to his drip medication, and the drip would take about 45 minutes, I would crash out on the sofa in the living room. Nobody would bother me. Not even Star – she would absolutely refuse to leave Antonio, in any case, at these times, to the nurse’s initial disgust (although she soon came round to the idea). When the nurse had finished, she’d come and nudge me awake, before letting herself out.

    Then, Hannah and Virginia (I will be eternally grateful to them, who in this story represent an amalgam of so many of my girl-friends who really came up trumps in this difficult time) would make space in their busy lives to grant me catnap time. Virginia, for example, would come in the early afternoon, an hour or two before I had to start work at the University, so that I could get out, find a parking space, and catnap before starting work.

    This is not to say that I was immune to the effects of sleep deprivation. There were entire lessons, for exampe, that I had no memory of. But then, judging from some students’ exam scripts that I saw in the summer after Antonio died. neither had they.

    Another is with Antonio gone getting on for four months now, I’m seeing plants lilium, gladioli, irises, all starting to flower on our balcony. Now, these are plants from bulbs. Bulbs need buying. They can’t be my usual fridge relics. And not only. Once you’ve bought them, they need cosseting: snugly wrapped first in cotton-wool, with then a light layer of mulchy soil, in a dark room, with a little weak tea every so often. When did I do all that? I have no memory of it.

    Then another. This one came out while Antonio was still with us. I started receiving emails via the University server to the effect that I had won an XYZ® ebook reader, and would I mind the story being published as part of a collection with the other prizewinners. As the uniss server has a cobweb for a Firewall, we naturally assumed it was the usual spam - “You have won zillions of euros! Click here!” “Yeahyeah” and delete. Over the space of a month these messages became ever more insistent. Antonio had a good time, and felt useful, finally managing to stop the flow for good, doing some mild hacking on the uniss server.

    So, just imagine our surprise when one day the XYZ® ebook reader turned up at the door. I remember very clearly he asking me “But DID you write a story?” to which my answer was a categorical “No!”. We came to the conclusion that it was some mistake, and a fortunate one at that as Antonio quite liked it. And it came in very handy on our last trip to Padova, for the boys, who were with us on that trip.

    I’d forgotten entirely about it until, in May, I finally got round to having a look at Antonio’s laptops – he was quite an aficionado in the good times, taking them apart, putting them back together again. I had to check what needed saving, what to delete, prior to sharing them out among our friends. And what do you know. There it was. In a Dell. And, not just the story. A neat little file containing story, submission form, email response back accepting submission… the whole caboodle!

    I have no memory, none whatsoever, of ever having done this. This particular laptop must have been one we were using on one of those long, terribly long nights.

    A word about the title I have given to this. It would not be right to put a specific subject to 'care' because that 'care' came from so many very good people.
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