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I don’t want to write about a being a carer. There, I said it. I wrote about it once briefly in 2000 in a piece called Behind the Walls, to tie in with the passing of the Carers (Recognition and Services) Act – and frankly that required the distance of fifteen years from the original events for me to put pen to paper: pens incidentally, are presently available in all good antique shops. And since that brief revisiting, I have barely spoken – and certainly not written – about it again. It is dark, difficult territory to which I do not particularly wish to travel.
So why now? As in 2000, there is a motivator. Firstly, carers are back on the agenda that they should never have been off, primarily for the negative reason of government cuts and the effects of those upon them. Secondly, following the publication of the Law Commission Report on Adult Social Care in May last year the Coalition government does seems minded to deliver some improvements for carers: however, going back to the first point, whilst welcoming anything that improves the lot of carers, what about the harm to carers that the Coalition expenditure cuts have already caused, and who precisely will be paying for these new services for carers in these austerity-measured times? (New rights and services for carers that cannot then be afforded or provided by local authorities are not really worth the paper they are printed on: and please do not get me started on mean-testing and carers: that would require a very long article.) And thirdly, on a very positive note, it is Carers Week: a very good moment to celebrate and show immense public respect and support for carers for their incredible work and commitment, and, on a far wider canvas, what they bring to society as a whole. It was long since identified that if the approximately six million UK carers (no one knows the exact total, but that is the 2001 census figure) ceased their caring role, NHS and social care services would quite literally collapse.
So, back to the short piece I wrote in 2000 for Community Care about my experiences as a carer in the early 1980’s. Here it is in full:
I was 20, Deb was 21. We were carers to my parents: John, who was in his eleventh year of multiple sclerosis, by then completely paralysed apart from some movement of his head, and Miriam, in the terminal stages of a long battle with cancer.
I hadn’t slept for weeks. After a while you get used to the exhausted, skewed, blurred, edgy reality it creates. The sleeplessness was because John hardly ever slept. Why should he? He didn’t use energy, and no doubt his mind was racing, too.
I don’t think he wanted to deprive Deb or me of sleep, but unable to find any oblivion himself, every waking itch, scratch, blowing of his nose, desire for a drink, or emptying of the urine bag required the assistance of another. Before, it had always been Miriam, but she was now bedridden. Not that this had stopped him asking and her trying to attend to him on occasions – it was too much part of their lives.
Sometimes, particularly at night, I wanted to scream at him. On one occasion, I did. I went in to check on them both and discovered that Miriam, who was at death’s door, had crawled under his orthopaedic bed. He had asked her to change the air flow on his ripple mattress. In exhausted, apoplectic disbelief, I screamed and swore at him. It hurt him, there were tears in his eyes, but it never happened again. I now realise it was part of his denial that she was so ill.
Getting John on and off his bed was a massive task, requiring a ceiling-mounted electric hoist. Once on the bed, there followed a series of complex activities to prepare him for his rest involving catheters, ripple mattresses, wrist splints, massage, and the putting on of callipers, requiring brute force to push the knee joints down until the calliper locked the knee joint straight – and all, if you got it right, timed perfectly to avoid bringing on a chronic, body-shaking muscle spasm that would then put you back to square one.
Nobody taught me how to do all this. I just seemed to know, perhaps having seen Miriam do it over the years. Deb then learned from me. Should we have been doing this skilled mixture of primary nursing and physiotherapy at all, considering we didn’t know what we were doing? None of the district nurses, or doctors – rare though their visits were – ever raised any objections. But, then, who else was going to do it?
I tried to talk to Miriam about dying and how much I wanted to help her through it. She tried to talk about carrying on living. It was hard for us both. Waiting for somebody that ill to die is an ambivalent experience: to want so much for them to be released and so much for them not to go.
Miriam and John shared a bedroom, their beds separated by a central gap. On the night Miriam died, the nurses had put John to bed facing the wall, his back to her. He was asleep when she died. I could not tell him at first, I was too upset, so Deb woke him up and told him. He would not believe it. I tried to turn him over so he could see her, but he was too heavy. Throughout he kept calling her. I tried to convince him, but he would not accept what he could not see.
Finally, the duty doctor arrived. She did not know any of us well but she was wonderful. She talked to John, she organised us, she telephoned the undertakers, and together, the three of us got John into his wheelchair and gave him the chance to say goodbye to Miriam. I would have given anything to give him the power of touch.
Later that night, with John in assisted sleep, we finally had the opportunity to sit down and cry.
It felt like an ending, which is how it should be when someone dies. But by 6.30am, the caring had to resume once more. The desire to grieve was replaced by the necessities and demands of another day.
(Behind the Walls – Berbiers, N, Community Care, 26.05.00)
I have not read that piece for twelve years, and my first reaction on reading it again was how much self-editing I had done to the narrative. Community Care had not given me a word limit, and so I could have said much more. The piece as written evokes whatever it evokes for you, but re-reading it let me assure you it was so much more difficult than I described. I actually do not think I went anywhere near far enough in giving a sense of what being a carer in those circumstances, that young, facing such profound levels of disability and illness day to day is actually like. Let me put it this way. There is a part of me that is still tired: and that is not a metaphor. It was so demanding, and so exhausting, that thirty years later I can quite easily locate a part of myself that is genuinely still worn out and still recovering. Whatever it is in us that is rather like a battery – some part of ourselves that we have to call upon to face extreme demands and challenges – I am very clear that being a carer puts a very heavy drain on it. That is one of the numerous reasons why we have to care for carers. It is just indescribably demanding to be one.
I will take this opportunity to add a postscript to the original piece. My father, John, died five months after the events I described. He went into hospital in the final few weeks of his life. However, that took the District Nurses actually refusing to provide services to him at home anymore because they deemed his level of medical and physical care to have far exceeded what we or even they could provide. Even after they advised his consultant of that, it was many weeks before a hospital offered him a bed, and that was in a geriatric ward, though he was not geriatric. It was a quite dreadful end for him in entirely the wrong setting.
I can observe that in those days there was not the hospice infrastructure that there is now, and I would like to think that if those events were occurring today that is where he would go. I can also observe that back then there was what I can only term an extreme wariness and reluctance about providing respite or phased care, or hospital beds, to MS patients. We saw that phenomena endlessly and the nurses involved in my dad’s home care confirmed – very off the record – that that were indeed issues in that regard within the sector. I do not really understand precisely what that was about other than my sense that it related to MS patients supposedly being ‘very difficult’ (a phrase I heard used) whilst also often long lived, and thus extremely resource-intensive: I heard that muttered too. I have absolutely no idea whether that issue pertains these days or not. Whatever those highly negative perceptions or attitudes were that existed covertly three decades ago, I sincerely hope they are long since gone.
I never made it clear in the original piece exactly who Deb is: which was poor writing rather than deliberate omission! We were in fact young newlyweds. These days we are neither young nor weds, though it’s not all doom and gloom as we are very good friends. Something I should have done in the first piece, and will rectify now, is to publically thank her for being a carer to my parents with me. In speaking to her whilst writing this, she said she does not ‘need’ thanking. No, but she most certainly deserves to be thanked. The fact that she was willing to be a carer to unrelated people whom she barely knew really, and worked so hard, and gave so much commitment to it – and stuck it out in the face or incredible adversity – deserves if not some sort of medal then immeasurable lifelong respect. She most certainly has mine. Thank you Deb, from me and for my parents.
I asked Deb if she wanted to write a piece to go alongside mine, which she declined on the basis that she felt I would be describing for us both how it was. I did ask her if she wanted me to make any particular point on her behalf, and she said that for her the two biggest facets of being a carer were firstly the isolation, and secondly the way in which she experienced ‘such a hugely destructive effect on self-confidence, becoming more and more ‘a carer’ and more and more losing yourself’. She recalled how after being a carer ‘it took a long time to know who I was, to be confident to be me again.’
Thirty years ago, there was not the carer support that has developed since. There were no groups or support networks at all in our neck of the woods. Would we have benefited had they existed? Yes, unequivocally. To have had someone else to talk to who understood and could relate to our experiences would have been hugely positive.
Something I had not given any thought to previously is whether there is any significance or ‘meaning’ to being an adoptee and a carer within the caring dynamics: which only arises as a question in my mind as adoption is such a sector issue at present and I was thinking about adoption generally. I do not know how many adoptees become young carers or adult carers to their adoptive parents – I very much doubt there are figures on that – but there is no particular reason to think it has any different a proportionality than that of non-adoptees.
I cannot speak for anyone else, but from my point of view being an adoptee was entirely irrelevant to the actual experience day to day of being a carer. They were my mum and dad. So what if I was adopted? But I suppose it is interesting phenomenologically – trying to bring an objectivity to this – that an obverse occurs where the substitute parents (the adopters) end up being substitute parented by the adoptee (the carer): many carers to parents have written and spoken about a parenting role reversal. But unless I am missing something – which I may be – it does not seem to me that there is any difference at all being a birth child or adoptee carer to one’s parents. I can only say that I did not experience being an adoptee having any relevance day to day.
However, I raise the adoption issue, as one aspect where I do think it is relevant – or was at least for me – is in relation to grief. With the best will in the world, however well adjusted one might be, I do think there is something of a triple whammy which strikes following being a adoptee carer to one’s adopted parents. First, there is the exhaustion if not trauma of having been a carer. Second, there is the grief at one’s adopted parent’s death. And thirdly, there is a triggering of a whole other level of loss and grief in relation to one’s birth parents. It is very hard to describe, but basically feels like – Bang! – ‘now you really have lost everyone’.
I found that very, very tough. It took me quite a long time to adjust and stabilise to that, and I felt very lost and depressed for quite a long period afterwards.
So all I would say on that, in an attempt to extrapolate my own experiences to some positive end, is to say to those who assess and support carers young and old, please do factor in that when the carer is fostered, or subject to special guardianship, or adopted, there may be additional support needs following the death of the people being cared for, that may arise.
In conclusion, I am glad that we were carers to my parents – and Deb still feels that too. I am glad we were there for them. I am glad we did our best for them. And as the parent of three wonderful children, two of whom are now actually older than I was when I was a carer, I feel I should also be honest enough to say that I would never, ever allow them to be a carer to me. I may get criticised for saying that, but I speak only for myself. I do not for one millisecond seek to criticise or imply a negation of anyone else’s caring situation.
Carers deserve immense respect and support, every second of every day. It is Carers Week. Please support and advocate for them this week and every week of every year.
Join @SWSCmedia debate Today (19-June-2012) at 8:00 PM UK. / 3:00 PM (New York) & share your views on Caring for Carers.