End of an era…

Finding a carer that’s good to work with is difficult. Not that there aren’t good careworkers out there – there are loads of them. But it comes down to personality in the end. Sadly, Maureen, the carer that’s worked with MW and me has decided to move on to pastures new. I’m not going to say that it’s all been smiles and good times with Maureen. Like all relationships, both personal and professional, there have been some arguments and spats, but we’ve worked through them.

I’ve already written about Maureen and how she’s helped us every morning. She’ll probably not see this but I hope she’s happy in whatever she moves on to. We’ll still see her occasionally – we may have lost a good carer but we’ve gained a friend, which is far more important!!

On a similar subject, a friend of mine on Twitter is delivering a eulogy at the funeral of a woman she cared for until her recent passing. To have been given this honour speaks of the close relationship she had with the person she cared for. I suspect it will be difficult but I hope there are more smiles than tears.

The internet – judge, jury and executioner.

It’s been a quite week for judging people, hasn’t it? It’s been judged that the News of the World is no longer worthy of publication and the 200 mostly innocent people now out of jobs are somewhere beneath amoeba in the grand scheme of life. Journalists give their judgements on celebrities’ private lives, while those same journalists have their choice of writing subject judged as being too trivial for intelligent consideration ( e.g. Sali Hughes on Cheryl Cole ). The world seems to be permanently wearing its collective wigs and robes in readiness for passing judgement on some subject or other.

One such subject of intense judgement was brought to my attention over the last week courtesy of @BrokenOfBritain on Twitter. The story of Shana Williams, a woman whose husband was severely disabled in a car crash, was published by the Daily Mail’s Femail section. The story appears to me to centre around two of her decisions:

i ) not to be her husband’s full time carer, and

ii ) to begin a relationship with another man whilst still married to her husband.

I have a great deal of sympathy for Shana. The life she looked forward to when she married has been denied her. She’s dealt with it all in the way she’s thought to be most appropriate to her and now, with this article, her decisions are very much in The Court of Public Opinion. I have a great deal of sympathy with Shana because of the things that I’ve previously touched upon in this blog and other things I’ve not let out into the public domain.

The article states that Shana has some professional experience of caring as a nurse and has decided that being a full-time carer, a mother to two sons and continuing full-time employment was beyond her. She arranged for her husband to be placed in a care home. I don’t envy the decision she’s made but I do respect it. And I will not judge her. Being a full-time carer is a demanding role – both physically and mentally. I didn’t choose to do it. By which I mean I didn’t apply for it and I didn’t study any specific qualifications to do it. I do it by dint of the fact that the person to be cared for is my wife. The woman I fell in love with and married. Don’t assume that I care for her with a smile on my face and lightness in my heart every day. That’s not true. There are an increasing number of times when the exact opposite is true. I chose freely to do this and it’s a decision I make every day – hell, sometimes every minute. Shana chose differently and has my respect for that.

The paper then goes on to touch upon the fact that Shana has recently begun a relationship with a man other than her husband. This second decision seems to have exorcised those people who love nothing more than to spray their bile on comment sections. Let’s make this clear, Shana didn’t start this relationship with another man immediately after her husband went into care. I’m not going to try and guess what she was thinking. She may have lay awake for many nights contemplating the possibility before beginning the relationship. It might have been an instant attraction that took her by surprise. I don’t know and the article doesn’t make it clear. I’ve read many similar stories on carers’ forums from people who care for their husbands/wives/partners. Some writers have their own solutions to being in an extremely difficult position, i.e. being in an unfulfilling relationship – from escorts to affairs to accepted celibacy. Others have no idea how to deal with this most personal and intimate of subjects. The one common denominator seems to be the anguish they put themselves through . Many, many weeks, months or years of frustration. As I’ve written, Shana may well have been through this too. But, however her new relationship began, she did not deserve the raging torrent of enmity poured on her personal life from malicious commenters.

The Mail article states that “…only those who have made such a self-sacrificing choice have, ( Shana ) believes, the right to judge her." I disagree. She deserves the right not to be judged AT ALL. The right not to have her character assassinated by those who are full-time carers OR those who have no semblance of idea what she’s gone through to reach her decisions. I’ve written about being judged as a carer before. I’m not looking to be cast as a paragon of virtue or an icon of immorality because I’m neither. I’m just me. I face many of the same inner struggles as Shana but our circumstances are different. I don’t know what lays around the corner with my wife’s MS. I don’t know if I’ll reach a breaking point and want to run a mile, never to return. All I do know is that, like Shana Williams found, my life – and, yes, that of my wife – is not what I envisaged when we met 9 years ago. Our relationship is radically different from when we met too. And IF my outlook to caring changes in the future, I reserve the right to have my decisions respected and not to be judged either. You can shove your wig and robe up your arse.

Love? Or break point?

Following on from my first post, and the responses to it, the prickly subject of relationships is in my thoughts. I’m not going to gush about mine and seem all sanctimonious because that would give you a false image. Let me give you two examples of relationships I’ve encountered or heard about.

A bloke I know, let’s call him W, looked after his wife, who had MS, until her untimely death a few years ago. The actions of a man deeply in love with his wife and devoted to her throughout. W now lives with his daughter trying to be as good a parent as he can, and does an incredible amount of good work for a local MS charity.

Another man I’ve heard of, who I’ll call J, cared for his wife, who has MS, for 10 years or so. I know little more about him, save to say that it all got too much for him and he left his wife. He took their children and left to be with another woman who he’d met on the internet. J arranged for his wife to be accepted into a care home where she remained until quite recently. She now lives in her own home with carers helping her.

At first glance, you can judge each of these two people. W is a noble man, the kind of man who gets lauded as a role model, the man that makes women turn to their partners and say “why can’t you be more like him?”. On the other hand, J is the worst kind of rat bastard who deserves ten kinds of pestilence to fall upon him. Easy, right? I disagree.

W is a good man, BUT… the man I see has been deeply affected by what’s happened to him. He looks tired and stressed whenever I see him yet he maintains that he’s happy. He’s happy with his very long distance relationship, he’s happy with his daughter now at college, he’s happy. I don’t know W very well at all so he may well be as happy as he says he is. But, to my eye, he looks like a man who’s seen and experienced too much and is trying to cope with it all. Only he and those close to him can say with any certainty just how well he is coping. To me, J started out with good intentions – you’re not a carer for 10 years if you’re an innate bastard. He reached a point where he couldn’t take any more. Could he have made his exit differently? Maybe. Who knows.

I’ve met or heard of many people who fit into both of these categories, one who stays with MS or one that runs away from MS. Every person has a breaking point. J reached his and nobody but him knows what it was that took him there. I think that J saw himself as living with MS first and with his wife second, and that he left MS since MS wouldn’t leave his marriage. Perhaps W didn’t reach his because destiny, nature, call it what you will, got there first. Maybe his breaking point is occurring now and has been since his wife died. All I know is that I think of both of these people in connection to my own relationships – both with my wife and with MS. I’ve not reached my breaking point but living with MS is bloody hard. As a carer it’s easy to find yourself increasingly living with the disease rather than living with your partner. Did J leave his wife too early? Should he not have recognised his breaking point? Was he being selfish? Why should he not have thought of himself and his own life? Did W stay too long? Is he aware of the effect that his experiences have had on him and his life and family? Would he have been happier leaving and letting someone else deal with his wife’s MS?

A carer’s feelings and suffering are generally considered as secondary to those of the person they care for. Illnesses, diseases and disabilities have names and recognised symptoms. A carer’s suffering remains unrecognised yet I see it as neither easier nor worse than that of the person cared for. It is equal but very different. I find that I can’t judge either of the men I’ve written about here because I don’t know if or when I’ll reach a breaking point. And I don’t know that I want to either.