Carers and the burden of Expectations.
I want to normally write in reference to my work as a children’s writer, but I have been awake in the night after reading a tweet by a highly influential academic urging relatives of those with dementia to take responsibility for their feeding in hospital. I have even read the comment that this would free up nursing staff to look after those who have no relatives.
I understand the context of this. I was a carer for my mum for 5 years until her recent death in 2014. I understand the horrific reports of abuse and neglect. I understand the financial demands on the NHS. I understand the frustration and fear that comes with leaving a relative with dementia in hospital, and why some carers seem to be welcoming this idea. But I strongly disagree with this proposal, and now that I am no longer a carer for someone with dementia, I want to talk up for those who still are.
I was a carer for my mum, who had many medical problems in her old age, one of which was vascular dementia. I was a carer for five years before her death whilst at the same time bringing up four children with my husband. She lived directly across the road from us with my dad. In the week before she died she said to me that I was the best daughter she could have hoped for. I say this feeling rather a fraud, and not to boast, but as a sort of reference for myself, to give me a defence or authority for what I am about to say. I shouldn’t really have to, but I fear that only those who were ‘the best daughter or son’ are being listened to – those who are NOT coping are not having the input they should have into the formulation of policy. And they are carers too.
I found the day to day demands of being a carer a real struggle. I did not enjoy it. Actually, even with the support of my lovely husband, the Age UK dementia outreach nurse, and a therapist, it nearly broke me, physically and emotionally. I am still dealing with the aftermath. I am not even a hundred percent sure I did the best thing taking on the role of a full time carer, but, as with many people, I felt I had no choice. I did my best. I’m still not sure it was good enough, but my elderly parents were utterly unable to cope, and my siblings were not in the position to take on the role. In many ways I felt I had no choice, but even with the most supportive husband in the world and four lovely children, the experience was often awful.
The experience of being a carer was often awful for me because of exhausting bureaucracy, because of non-dementia, non-elderly- people – friendly encounters with professionals and systems. I spent many hours fighting for my mum. I fought for her in hospitals when she was admitted, asking for assessments for her, fighting for her to have the right medication, the right attention. I remember arguing for hours with one doctor who, after she was admitted to hospital after a fall, took her off her heart medication and only listened to me when she was literally at the point of death. I keep telling him that if he did not give her the medication she would die, but he kept insisting that he had to monitor her without it – and it was only when she became very ill and I was told she might not even survive the night that he gave in.
But it was also awful because I was socially isolated, I was worried sick about money, because I had left my job, that because I found it overwhelming trying to look after my four children and my mother and the needs of my father too – who whilst living with mum was also struggling with cancer and recurrent chest infections, who always had relied on my mum for the every day transactions, and who was often in denial about her capacity.
The experience was also awful because of the nature of dementia and the depression that my mother suffered from. Most days during those five years, nothing was good enough. I used to steel myself to go over to her, as many, many days I would be told how miserable she felt, how I didn’t understand that she was dying, that I was heartless. I was distressed by her distress, and not able to distance myself. At times my mum thought I was stealing her money, lying to her. I remember feeling desperate when she point blank refused to pay me money for a month’s amount of groceries. For those who ask – ‘why didn’t you have power of attorney – why didn’t you use her cheque book to pay for the food?’ – you have no idea. I did have the power of attorney but I couldn’t have used it without causing utter meltdown. Even before my mother’s dementia she was a fearful person. My parents avidly watched Jeremy Kyle and any programmes with ‘…..from hell’ in the title. My mother was terrified by stories of daughters cheating their parents, taking all their money, and then banning them to some hellish care home, and the fact that I had always tried to be a kind loving daughter and was doing exactly the opposite to the people on TV made no difference. Any mention from me of cheque books or cards and all the years I had tried to be the perfect daughter were wiped out – I was the daughter from hell, stealing from her. My father didn’t want to upset her, so I would pay for all shopping from my own money, and then my mum would take her cheque book from her handbag, and I would write a cheque for the amount in front of her. My mum would suspiciously scan it in case I had added money, and then sign it. She would not let my father near the cheque book, as she didn’t trust him either, and as he had never written a cheque in his life, he was happy to go along with this.
I am a practicing Christian, and I have found myself wondering why God gave me enough strength to be a carer, without the satisfaction of believing and feeling (even if others told me) that I was a good one, without the selfless joy or sense of vocation and fulfilment that I see documented in so many carers’ blogs. In case this lessens the impact of my words – I would like to say that doctors, nurses, psychiatrists and my own family and friends, all commented on me being a good carer, so on the surface, at least, I succeeded. I try to be a good person. I didn’t run away from my responsibilities. I was there when I was needed. But only just.
And now I think that the reason why God gave me just enough strength to get through these years and to enable my mum and dad to feel cared for, but not the strength or personality to feel inspired or energised by my caring, is so that I can stick up for those carers who aren’t coping now. Because they need help. And I fear it is not economically or politically convenient to acknowledge this.
There are important, inspiring and influential people speaking on behalf of carers now – one person looked after her father who had dementia for many years – and whilst they do a vitally important job pointing out any problems in the system, many people speaking about caring are often quoted as saying they don’t personally regret a single moment spent looking after their family member, that they loved it and cherished the experience and would do it again in a heart beat. This is great and inspiring – but please PLEASE don’t formulate policy – like the one proposed about family being responsible for feeding – based only on lovely people’s experience of loving their relatives and not regretting a single moment helping them. Everyone has a different history. Carers are often not given a choice about caring – and they have no control about what they bring to the table – their past history with their relative – their own emotional resilience and self-confidence, their personality. Please don’t only listen to carers who loved caring – who are good at it – who get awards for their inspirational work and writings about their experience. Please can you listen to the ones who feel or felt they were – or are indeed rubbish at it – who are shamed into silence – who aren’t coping or only just – who are trying their best but don’t feel good enough – who really shouldn’t be left to carry the burden alone – or even carry the burden at all. And for whom, being responsible for feeding their families in hospital would be the last straw.
Because in these days of austerity, for many carers there just isn’t a large network of other family members who can take turns to help feed a relative in hospital. Many people are struggling on zero-hours contracts, or working for agencies or on temporary contracts. Such is the awful nature of our benefits system that those who are unemployed could often, in practice, not commit to taking turns at feeding their relatives for fear of being sanctioned. If you make it part of the expectations of a hospital that relatives are responsible for feeding patients with dementia, in effect it will be the same care-giving relative that has to carry the burden, regardless of the other demands on their lives, regardless of how they are coping with being a carer full stop. If I had had to feed my mum on one of her hospital admissions as well as travel to the blooming hospital every day, fight for Mum’s care, AND look after my family, I would have had to have been admitted myself.
I felt I had to write this for the sake of those relatives who are expected to be like saints when they are struggling to just get by as decent humans, but even writing this today and re-living my recent experience has made me feel awful. I am so very glad my mum felt loved by me and I cared for her until the end – that she only had her last fortnight in hospital and had a good, gentle death, but I am so, so glad I am not caring for my mum any more, and I strongly oppose any further (and economically convenient) idealisation of the role of relatives in the caring process – this puts intolerable burdens on those already stretched to the limit. Carers need more help, not less, and hospitals need more caring, trained staff, not relatives plugging the gaps.