Serve the Servants

The 11th to 17th of June is national carer’s week here in the UK. I’m not usually a fan of weeks for this and days for that as I think they can often provide a pinnacle of focus for that week’s highlighted charity or issue which then gets forgotten about until roughly the same time next year. They are horribly media centric – perfect for journalists and bloggers who need a prompt for something to write about that day (self obviously guilty here). The activities that surround them are usually very cheesy or horribly decadent, designed primarily to pull on heartstrings and generate direct debits from as many people as possible. However, then I start getting into my feelings about charities in general which I surely will another time but not now. For the time being I am going to take the sound bites I’ve heard on the news and Woman’s hour as bait and talk a little bit about carers and caregivers rights in this country.

I feel qualified to talk about this as it is a subject that is deeply, deeply close to my heart, even though I wish it wasn’t. In an ideal world it wouldn’t be me who was writing this blog at all, but Owen- he’s the expert on this subject and I would love for him to guest blog on this page. I’m sure he, circumstances permitting, would have gladly obliged. Like a lot of people in his position, he’d love to have time just to write articles about things for fun, too. However, for his sins Owen is my long term carer. As well as being an ambitious full time PhD student (sans funding) with a two hour commute to his University, he additionally has to look after me and work two jobs spread over thirty five hours a week to support us both enough just to scrape by. Today, Owen got out of bed at six am, started work at seven, and isn’t planning on stopping until midnight or so. It has been this way for a long time now; he barely even takes a day off. He usually falls asleep at the keyboard sometimes around one o’ clock and staggers to bed after I have spent ten minutes giving him a list of reasons why he will make himself sick if he doesn’t at least get some rest.

We don’t get any help from the government, nor have we ever done, for many complicated reasons, not least the fact that he is a student and financial help for those in higher education is pitifully hard to come by, even if your wife is so sick she can’t get out of bed and doesn’t know what day of the week it is. We don’t get any support, despite the fact that, as part of the army of unpaid carers, Owen and those like him are saving the government billions of pounds in labour costs – for the government to actually pay these carers the same as paid professionals the work they do would involve spending the same again as the annual NHS budget (57 billion). In terms of carers, Owen is one of the relatively lucky ones. Most of the time I am fairly high functioning, and can do things for myself, even if they are within a limited sphere. However, for the last five years I have been unable to work for more than a few weeks at a time and several times a year we will have a bad spell where Owen has to really take over.

During these times, which can last from a few days to a few months, Owen suddenly finds me incapacitated to the point that he has to do all my domestic jobs; the cooking, the shopping, the cleaning etc which are time consuming and annoying, but that’s only the tip of the iceberg. For twenty four hours a day, seven days a week, for long stretches of time I might go into ‘I want to die’ mode, which (as I guess the name gives away), means I am actively suicidal. So, not only does Owen have to do his studies, his teaching, papers and conferences, as well as everything around the house and his mundane paid employment in museums and cafes but he has to spend countless hours watching and caring for me. On the days he doesn’t call in sick at work because he’s too scared to leave me (I think most of his employers think Owen’s immune system is pathetic when in fact it is steely) he will phone me from his desk and we will talk in code every fifteen minutes to make sure I am still alive. It is embarrassing for me to admit, but during these times he becomes responsible for everything about me; from making sure I eat, sleep, wash, dress, brush my hair, and clean my teeth and all the other things that most couples don’t think about. It is not unusual for him to take hours in the morning just getting me out of bed and looking like a human being. At night time, he has stayed up all night, for days on end, just watching me, making sure I don’t do anything daft. He takes me to appointments, liaises with doctors, psychiatrists, nurses, he learns names of drugs and therapies, negotiates what medication I should be taking when and makes sure I take it, even though this can lead to some blinding rows. He sits with me whilst I cry, listens to me for hours moaning about what an ugly bitchy shithead I am. He eats microwave food with blunt cutlery because all the knives are locked away. He accompanies me on bus and train journeys because I can’t face them alone, he walks with me in town because all the people can trigger psychosis on a grand scale.

These are just a small selection of the daily sacrifices Owen will make to give me the best life he can. Our relationship turns, (sometimes overnight) from one of absolute equality to total dependency. My personality is transformed and my functioning is grossly impaired. Yet Owen just gives and gives and gives. He does all the above and more, and has never, ever complained. Sometimes he gets tired and down with it all, sometimes he can get very upset, but has he ever snapped at me or lost his patience? Never. Not only does he do all this but he tries to give me a good quality of life; despite being so tired that he needs twenty five cups of coffee just to get up in the morning, he tries to do this all with a laugh and a smile, a hug and a kiss, a joke, a giggle and lots and lots of sympathy. He tries, whenever possible, to keep me out of hospital. He cares for me with dignity and respect and makes sure my wishes as regards my treatment are upheld as much as is humanly possible. He slaves away to make an awful situation bearable, and every night before I go to sleep he says to me ‘I believe in you, this will get better and even if it didn’t I regret not one moment: I would do it every day for the rest of my life.’ And then he is asleep before his head hits the pillow.

I know. I know. If there ever was such a thing, I am one lucky manic depressive.

But, as special as he is, Owen is not the only one.

Up and down the country there are friends, relatives, neighbours all caring for people they love not for monetary value or job satisfaction but because they feel it is the right thing to do. Many have given up well paid jobs to do so, and have to eke a living out of the pittance that the government provides for the ‘lucky’ few carers it deems eligible for financial help. At the moment, the maximum weekly carer’s budget is around £48.68, (for a minimum of 35 hours a week- equivalent to £1.39 an hour) which is significantly less than many of the other benefits going and many carers find themselves in financial dire straits. These are real people with real lives every day losing their houses, jobs, cars, and possessions in order to give their sick loved ones a life away from institutions and the slow decay they bring. The support they generally get from the system is laughable. Their hard work is often unrecognised or treated as a nuisance, their relationship with the patient undervalued. When they ask for vital support, for respite care, for some kind of state provided home help in addition to their unpaid labour, for some much needed money or equipment, it is usually an uphill struggle all the way. Forms are piled upon forms for even the most basic means of assistance and the lists of excuses soon mount up as to why you are not eligible for this or that. Many carers feel like the authorities are entities they have to constantly fight, rather than vehicles they can turn to for support. The strain is enormous, the pressure huge. Yet many of these carers are themselves are vulnerable people. A huge percentage of them are elderly, often hardly able to move properly or fully function themselves. On the other end of the spectrum, some are mere children who find themselves looking after their parents and siblings instead of concentrating on their schoolwork or social life; terrified that if they, as a ten year old child, don’t keep the family functioning then social services will get involved and split the family up. These are truly the unsung heroes of our society, for those people who have never had to care for someone day in day out then all I can say is you have no idea what it is like. I have no idea what it is like and I’m a lot closer to the action than most.

I sometimes ask Owen; ‘what do you get out of this?’ After all when we met he was just turned eighteen. He was barely an adult with patchy facial hair and a passion for computer games. He is not a super stud but he is not a bad looking bloke and he has a great personality. I think at university even if he couldn’t have pulled the Julianne Moore look-alike that he dreamt of, he could have at least chosen someone whose idea of an evening in wasn’t drinking a bottle of whiskey and locking herself in the toilet with a razor blade for three hours. To this day it mystifies me why he didn’t go running for the hills. I would have done. I have asked him this question a number of times. Sometimes I am genuinely curious, sometimes I do it when I beat myself up. He has only ever responded with these four words: ‘Jen, I love you.’ and refuses to be drawn any more on the matter.

It is, clearly, not all one way. I support Owen in many of the things he does and bring happiness into his life in many capacities other than the ones I have mentioned. Most people who care for someone deeply love the person involved and find caring for them rewarding and fulfilling, even if it is sometimes a soul-destroyingly exhausting and strenuous process. But it seems to me that it is precisely this love and devotion that the government are exploiting. They know that Owen and the six million others like him are not going to just turn their backs on their loved ones. It basically boils down to this, why pay someone for something when they are willing to do it for free? They know that Owen means it when he says ‘Jen I will do anything for you’. Even if that means year upon year of little sleep, no money, overwork and battle after battle with the authorities. When the alternative is to see their loved ones go into hospital or residential care, out of their lives and control, often putting them at risk of abuse and exploitation many carers simply say ‘over my dead body’, and battle on. That is what Owen and the rest of my family have done for me and I owe them my life several times over.

Carers, in my experience, are not asking for much.

They are asking for:

a) Enough money to provide them and the person they are caring for with a basic standard of living where crippling financial worries do not make an already fraught situation 1000 times worse.

b) Recognition of their efforts and respect of their own wishes and needs as well as the patients.

c) Respite care and more short term intensive inpatient services for when times get really tough. When they judge the situation to be unmanageable, that is, not some government crisis team’s checklist.

d) Specialist help for the things they cannot afford to provide themselves, or are not trained to do.

There are other things, but these are the main complaints I find most carers have. Of course, as a patient myself, I do realise there is a debate around giving carers too much power, in that I believe as a patient it is me who should always have the final word, if I am able to do so. Some carers may have ulterior motives and it is the authority’s job to ensure abuses do not happen. However, the truth of the matter is ‘what’s the alternative?’ If, as a patient you are not supported by those around you then there might be some limited care in the community stuff, but if you have a time of crisis or get too ill to cope, you will end up in an institution. Enter a hospital or a residential environment and you relinquish all control anyway, to people who are much more likely to abuse and neglect you than your own friends and families. Ask most patients who’d they’d rather have the power over them and I’d hedge a bet it wasn’t the syringe wielding electro-shocking multidisciplinary team at the hospital, but their loving husband, or their mum or dad or their grandparents. In most cases, patient’s rights are the one and the same as carer’s rights. These devoted caregivers are sacrificing so much and getting so little in return. That’s why we, (especially those of us who are on the receiving end of their love and attention) should be fighting together to get these unsung heroes the rights and privileges they deserve.