The first rule.

The first rule of (Not Being A) Dad Club is that you never talk about (Not Being A) Dad Club.

Did you know it was Father’s Day this weekend? Every shop you see has some Father’s Day angle or other. It’s on TV – adverts and programme spots -, in magazines, newspaper sites, all over social media. It’s everywhere. Tonight, MW said, apropos of not very much, that she’d like a child “even at 50”. Yeah, I’d have liked a family, too. It can’t happen though. And that hurts.

Long time readers here will know that my Dad died before MW was diagnosed with MS (Father’s Day is the same week as his birthday). MW’s Dad died earlier this year and we don’t have children. So, Father’s Day no longer applies in this house. It’s a closed shop – a club that I’m not a member of anymore. And won’t be. I might have written about this before and I might write about it again. Because it crops up every year, and I don’t remember what I’ve written before. And I’m not about to go trawling through to check.

One of the things that parenthood inspires is the thought of the future; that a) your family is continued, and b) gives you reason to look forward, with the assumption that you’ll have your children around you as you get older. That you won’t be alone in your advancing years – not necessarily from a practical perspective but from an emotional one. I can’t lie, the idea of being alone as I get older isn’t one I relish.

By alone, I mean absolutely alone. My mother is nearly 80 (don’t tell her I told you! She doesn’t know this exists.) and, as active as she is, I can’t assume that her health won’t deteriorate. I assume, as nature generally goes, I’ll outlive her. And the odds that MW and I will, at some point, no longer live in the same house seem to be getting shorter and shorter. I don’t begrudge others their happiness with their family. That’s not fair. I just feel wistful. Sad. Scared. Uncertain. A mind full of what if’s. And jealous. A real envy that my life has taken this path and not the one I’d set out for myself in my formative years. When I was actually thinking about the future and not busy obsessing over records or furiously obsessing over photos of Beatrice Dalle and Michelle Pfeiffer.

Actually, this time of obsession was the closest I’ve come to being a Dad. My first girlfriend unexpectedly fell pregnant and decided to have a termination. In the aftermath, I assumed that I’d have a family of my own “at the right time”. Obviously, I had no idea how things would pan out. I lost contact with her years ago but I do know that she went on to have a family of her own. I didn’t know whether to include this piece of information but I’ve written about it before, so I suppose there’s no real reason to leave it out. As I look back, I don’t really know what I’m supposed to feel about this now – shame? bitterness? regret? I don’t know. But it does hurt.

I guess it’s the same jealousy and wistfulness that seems to hit MW when she has a more responsive moment and says that she laments not being a mother. I used to think that Father’s Day card and gift buying was a bit of a bind. Because it coincided with his birthday, I’d have to do twice the spending. Our relationship wasn’t great (to massively understate the case), so I thought the cash could be better used on more exciting – and obsessive – stuff.

I get it now. I get what it’s supposed to be. It’s supposed to be a celebration of being part of a family. And the cards in the shops are a reminder of a club that I’ve joined against my will. (Not Being A) Dad Club. A reminder of a past that’s gone and a future that never will be. But if I have to be a member of this club, I’m bloody well going to talk about it. A bit.

Month to month

This is the hundredth post I’ve put up on this blog. In the run up to Carers Week, and the 5th anniversary of starting to document life as a carer, I’ve been posting pictures of items necessary for daily life here. Here, this is me lifting MW into a car so we can go shopping. I’ve done this hundreds of times but never seen myself do it. So I asked the carer accompanying us to take this video.

Yes, I know you can get Wheelchair Accessible Vehicles. But MW hates being “shoved into the back like cargo”. This is an argument that will have to be resolved soon.

This is the reality – a post written for Carer’s Week.

I was asked by the organisers of Carers Week 2013 to write a blog post for their site based on the subject of being “Prepared to Care”. I’ve reproduced it here (for no other reason than to keep the blog ticking over).

11 other carers wrote their stories about caring for the same site. Please take the time to go and have a read. Every carer’s experiences are different and it was educational for me to read their accounts of being a carer.

Meanwhile, here’s my post on the financial aspects of being a carer.

Over the 8 years I’ve been caring for my wife, I reckon I’ve lost over £175,000 in income (give or take a promotion or three) and as a couple, the figure reaches well over £250,000. When my wife was diagnosed with MS in 2005, there was no independent financial adviser tempting us with a glossy brochure illustrating the potential losses that disability and caring can bring. No presentation slides and projections for the following 5 to 10 years. In fact, we didn’t even think about finances that much other than ensuring we could scrape enough together to cover our monthly outgoings.

If you can sense a little sarcasm in the above paragraph, you’re right. However, there is a kernel of seriousness in there as well. While there are a number of organisations who will help you with filling in forms for various benefits, none of them can adequately prepare you for not having anything like as much coming in as you might have had prior to taking on the caring role. Will you, the carer, be the ‘breadwinner’ where you might not have had this role before? Can you still ‘work’ while being a carer? The person you care for may have such extensive needs that ‘working’ is no longer possible. To suddenly go from not having to worry about bills to wondering if you’ll be able to get the shopping you need is a hell of a shock.

Why have I put quotation marks around the word “working”? Because, despite many speeches to the contrary from politicians of all flavours, caring isn’t viewed as real work. It’s just something you do that prevents you from doing real “work”, right? I can tell you from my experience that it’s bloody hard graft. Hard graft for little recompense. Carers are a conservative’s dream workforce. And, perhaps controversially, I’m not referring to care-workers. They’re different. While they may not be adequately recompensed for what they do, they’re entitled to minimum wage and health & safety protection. Carers have no employee rights, no health and safety enforcement, and all for £59.75 a week. If you provide care for a bare minimum 37 hours a week, this is £1.61 an hour. Obviously, that hourly rate reduces the more hours you care. I certainly do way more than 37 hours – and way more than the 48 hours specified in the European Working Time Directive. There’s no choice. Caring has to be done because the person you care for needs the help.

When you’re used to an income somewhere around average salary, a drop to Carer’s Allowance is a big shock. I was a Civil Servant. And it wasn’t just a job, it was a career. I’d been promoted a couple of times and was on the list for another. My wife was also ready for promotion. Then MS appeared out of nowhere. We’d spent the three years up to and including 2004 dealing with divorce, court cases, and helping with my Dad who had terminal cancer. 2005 was supposed to be the first year of our future. It turned out to be the first year of MS in our lives. And a pretty vicious, progressive form it is too. We were married in the January and by March the symptoms were really kicking in. Diagnosis came in May. Right from the off, my wife needed help to look after herself. We lived nowhere near family and couldn’t ask friends to do it. It was just us two. So I became her carer. Not a post I’d applied for. Not one she’d advertised. But that was the reality.

I had to stop “working” because I had to provide so much care for her. (The photo attached to this post is from 2006 – her MS has progressed considerably over the last 7 years.) Needless to say, my wife had to give up too. Overnight, our “earning” capacity dropped by over half. You learn pretty quickly to do without your disposable income. You learn, or at least I had to learn very quickly, that every penny has to be accounted for every month. That there’s no “fat” available. Your lifestyle has to change but, with disability and caring, your lifestyle is changed for you. Things like going out become a thing of the past, so you’re saving money there, right? You concentrate on keeping a roof over your head, putting food on the plate, and the home heated and lit. That’s it. The other stuff doesn’t exist any more.

Nothing and no-one can really prepare you for losing so much if disability should enter your life. Caring is the same. Your sense of worth is conditioned by society to be bound up in what your income is. You’re judged on it by the outside world, even if they’ve not met you – a cursory glance at today’s media will tell you that. And you certainly spend many a waking hour judging yourself on it. “Is this all I’m worth now?" Despite the occasional political speech or media article eulogising the work of carers whenever there’s an event like Carer’s Week, you can’t help but measure yourself against the bulk of the stuff you see in the media. Who’s got what? Who’s doing this and that? Where to go on holiday this summer? Etc, etc, etc. The Joneses are now a long way out of sight.

Think about your income. Think about what you might be doing with it over a weekend, over the summer. Then imagine over half of it gone. What would you do? This is the reality for a lot of carers. Would you be prepared to care?

Burbling blind

Friday night/Saturday morning – 00:35.

I usually take my time over these posts, making sure they make sense before letting them out “in the wild”. I’m pretty self-critical – no, actually, I’m extremely self-critical – and this extends to writing posts. I try not to depress the shit out of you, gentle reader – or me, for that matter. I also try and make sure I’ve got something vaguely interesting to write about before putting finger to keyboard. I haven’t got that vaguely-interesting-something tonight, that “hook” to hang the rest of the post on.

It’s not for lack of anything in the news. Jack Osbourne has recently been diagnosed with MS, presumably Relapsing Remitting MS. I’ve got something swirling about in my head about this but I just can’t get it out. I wish him and his family well for the future. It’s also the end of Carers’ Week in the UK. I’ve not followed enough of the goings-on, even locally, to use it as a subject. I can’t even summon the vitriol to wade into Jimmy Carr, tax avoidance schemes and their knock on effect to welfare services. I’m too preoccupied with what’s going on here.

No, it’s just me burbling tonight. Frankly, I’m trying to find something that’ll make me smile. Because this week has been hard. After taking MW to the dentist, it’s come to light that she’s been struggling to clean her teeth for a while now. One of the first things you’re taught as a child is to clean yourself. Brushing your teeth is one of the basic planks of personal hygiene and now I’m going to start to do this for her. Since MW already has to be assisted to shower, this really shouldn’t come a shock. I mean, it’s a natural progression of the difficulties she has. But assisting is one thing, actually taking over doing a thing entirely is another. I’ve noticed a real difference in her upper body strength for some time now. It’s harder to get MW dressed because she can’t move her body as freely as she could even up to about 4/5 months ago. I know she can tell there’s been a change for the worse recently. I don’t know how she’s going to take to having this done for her. I don’t know how *I’M* going to take to doing it. There’s no manual to cleaning someone else’s teeth, is there? Fuck.

The week started pretty crappily too. Last week, MW had a routine eye-test. She’d realised that her eyesight was deteriorating and thought it was something that could be improved by stronger lenses in her glasses. So, off to the opticians. Half an hour later we’d been told that the optic nerve in her left eye is very, very pale. Her eyesight in that eye has deteriorated to 6/120 when aided with lenses. This scoring puts her at legally blind in that eye (at least, according to information I’ve looked at online). The sight in her right eye is compromised too but not to the same extent. The optician’s advice was to contact the specialist MS nurse with a view to being referred to an ophthalmologist for further tests and remedial action. I rang the MS nurse on Monday. Sadly, she told us that there’d be no referral. The optician’s default setting when they can’t remedy eyesight issues is to refer the client to their GP for further action. In MW’s case, the paleness of the optic nerve is due to nerve damage cause by MS. The damage is untreatable and irreparable. The only thing to do is note the optician’s findings. Double fuck.

So, after all this news, what do I do? Spend tonight looking at Richard Pryor documentaries on YouTube. Breaking my cardinal rule of not Googling this shit because it will fuck with your head. I’ve spent most of tonight crying. Probably because the crap news has kept coming this week and seeing Richard Pryor struggling at the end of his life in a wheelchair made me think of the future. And all I could see was bleak. Another cardinal rule broken. Double teary fuck with bells on.

Jack Osbourne tweeted to the news organisations which have started printing all kinds of horror stories in the wake of his diagnosis. His tweet reads, “Dear journalists…will you please stop sensationalizing my situation to sell ur poorly written magazines and papers. I AM NOT DYING!”. In his case, he’s right – even though worst-case scenarios make for much better stories and paper sales – Jack Osbourne is not dying with MS. But fuck me when MS is progressive, it’s hard to look at the disease and not see darkness.

Don’t panic!!! (contains strong language)

I remember my first vividly. It was sometime during the summer of 2005 and I was on the back seat of a friend’s car. And it gave me a feeling that I will never forget until my dying day.

Now, given the fact that I’m 40, I think you can surmise that I’m not talking about sex ( I wasn’t a 34 year old virgin! ). I am talking about panic attacks. My first diagnosed panic attack. There was nothing special about this day from any other after my wife’s diagnosis with MS at the end of May 2005. She, I, and everyone in her circle were trying to come to terms with it all so a friend offered to take us out for the afternoon as we’d effectively been housebound after my wife’s hospitalisation. We got my wife in the passenger seat and belted her in, and I made myself comfortable on the back seat. If my memory serves me right, 2005 was a pretty hot summer. For some reason, our friend had some aversion to having the blowers going in her car and didn’t fancy having the window open… anyhow, cut to the chase…. I’m sitting in the back of a Ford Ka and I felt I couldn’t breathe properly. Fair enough, take a few deep breaths and you’ll be fine. No. I felt like I was knackered. My fingers began to tingle, then my lips. A few seconds later, I had the worst cramp running up my arms and neck. My lips were screwed up with cramp. Shit!! I’m having a heart attack!! In panic I shouted for help and got our friend to take me to the nearest place that had medical staff in it. A GP’s surgery. Within minutes he’d told me that I was having a panic attack and to try breathing into a paper bag along with some breathing exercises. “A panic attack? Is that it?”

“I have a wife with MS and I have a panic attack?? What’s wrong with me? Have I no sense of priority? My wife’s just been discharged from hospital with walking sticks, a walking frame and a wheelchair, and I can’t cope? I have to cope!!! I’m her husband for fuck’s sake." My inner dialogue gave me a right bollocking. Must try harder. Get on with it.

That’s the problem. In trying to just "get on with it” in the 6 years since my wife’s diagnosis, panic attacks and depression have taken me to casualty numerous times with what feels like a heart attack. My poor wife has been dragged to hospital more times than I can remember with me “wigging out” as it was dubbed. I have had my mother living with us to help me cope with it all. And what 30-something doesn’t enjoy living with his mother and his wife, right? One such panic attack ended up with me on an A&E stretcher, hooked up to an ECG machine, and crying like a small child. My wife, understandably, was pretty fed up with me calling for a taxi to take us to hospital on a frequent basis. I was lying there in pieces emotionally, thinking she was going to leave me and how my life, our lives, was a total mess. An on-call mental health doctor (psychologist/psychiatrist – I can’t remember) was summoned to talk to me. She was the first to use the words “depression”, “stress” and “anxiety” to describe what I was going through. She also told me that any psychological help in the area we lived in came with a 3 year waiting list. Helpful. It’s now 2011 and I’m 4 years into taking anti-depressants on a daily basis. The trigger for my stress, anxiety and depression is around me all the time, and isn’t going anywhere. I get by day-to-day because I have to but it’s an epic struggle at times.

I’ve been thinking about my experiences recently after seeing media articles about similar things happening to public figures. Sussex and England cricketer, Michael Yardy is battling with depression ( and it is a battle ) and his illness seems to have prompted some less than helpful comments *. Today, Caitlin Moran has used her column in today’s The Times Magazine to talk about her experiences with panic. Both Michael’s and Caitlin’s triggers would have been different from mine but the effects will have been no less frightening and intense. I’ve heard many other carers describe their experiences with stress, anxiety and depression – some have had help, others haven’t. A number of them attempt to “try harder” and “get on with it”. It’s not that easy. And I wish some people would stop assuming that it is.

* In the interests of balance, I accept that Mr. Boycott has spoken further on Michael Yardy’s situation.

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.

Thank you and hello.

Erm…..it seems that my initial post has touched a nerve. When I drafted it, I didn’t know that it would be taken notice of at all – there are lots of blogs on the internet and social media sites are full of people highlighting weighty causes of their own. I thought mine would be lost in the ether. I have lots of people to thank from Twitter for passing my message on including (but not limited to) @HLNdevon , @TwistedJamie , @ThePaulDaniels and @charltonbrooker to name a few. If you’ve read this, re-blogged it, re-tweeted it, commented on it, or anything-ed it, thank you very much indeed. It means a lot that you’ve taken notice. People have said some very kind things to me or about me. I am truly touched ( and a bit embarrassed – I blush easily! ) . I wanted to write this post to clarify/expand on a few things.

1. My wife and I have had some intense ( i.e. tearful ) discussions about the subject of assisted suicide since I showed her what I’d written. She assures me that she has no thoughts of ending her own life and nor will she. She says she has people around her that she doesn’t want to leave and things in life that she looks forward to. I’m happy to accept this because it suits me to hear it. Despite this, I can’t help but have the issue nagging away in a small corner of the back of my mind because neither of us knows what the future holds, good or bad. Which brings me to…

2. I’ve spoken to a couple of people who have re-tweeted or re-blogged my post. They have MS in their families and the subject of my first post is largely theoretical for them but they have some concerns for the future. My golden rule for dealing with my wife’s MS has always been to trust her neurologist. This is the person who will have the best idea of how an MS sufferer’s condition will progress ( apologies to specialist MS nurses ). I can understand that people will want to know with some certainty how their particular MS will develop. I do feel a little sorry for neurologists where MS is concerned because it’s notoriously difficult to diagnose with 100% accuracy and each individual’s MS will be different. As much as they might want to give the information that a sufferer looks for, they can only be reactive to MS and its symptoms, not proactive. You can’t look at one person’s MS and think that another’s will be the same. We deal with my wife’s symptoms as they arise and get on with life as best we can.

3. Some other people have expressed an interest in reading more about how life is for us. I once considered doing a daily or weekly blog as a form of catharsis but I’m not diligent enough to do it. Plus I suspect it would get very dull, very quickly. I will post when something pops into my head.

4. Lastly, I want to give you a little more information about me. My name is Simon. Although I care for my wife and love her dearly, I am by no means a saint – my history is as chequered as that of any footballer. I self-analyse far too much and can be as neurotic and as shallow as the next person. I guess I’m just scared of being judged now that I’ve put my head above the parapet. Welcome to my little part of the world.

A painful post.

I must warn you that I have written this through blurred vision caused by a lot of tears. It’s upset me a lot to write it because the subject matter means so much to me. I’m not naive, I realise that other people might be upset by the subject as well. This is your “look away now” warning.

I should also say that I don’t have a illness, disease or disability. I am, however, the primary carer for my wife who has progressive Multiple Sclerosis. I make this disclaimer to make clear that I have no first hand experience of what a disabled person goes through. No matter what I witness, I don’t feel what a disabled person feels.

That said, I do have firm views on the issues surrounding disability and disabled people. One of which is the issue I fear most – death. More specifically, the prospect that my wife will feel so defeated by MS, in such despair and pain, that she wishes to end her life. I am prompted to write this by two events: i) Monday 13th June marks the start of Carer’s Week 2011 and ii) as I write this, the BBC documentary on assisted suicide, made by Sir Terry Pratchett, has yet to be broadcast.

The publicity for this documentary has hit me very hard because one of the case studies to be featured in it concerns an MS sufferer who was roughly the same age as my wife when he chose to end his life at the Swiss Dignitas centre. For those who haven’t seen the press coverage ( I don’t intend to repeat entire newspaper/magazine articles but here’s an example from the Daily Telegraph ), a 42 year-old MS sufferer, Andrew Colgan, chose to travel to Switzerland’s Dignitas centre with his mother and drink the poison that would end his life, and therefore his suffering.

My wife was diagnosed with MS in 2005. Four months after we were married. So far this disease has robbed her of her mobility, control over various body functions, her livelihood, in fact most of the things that the majority of people take for granted every day. We’re both in our early forties and our friends have children of various ages. This is another part of ‘normal’ life that is denied us. It’s reported that Mr. Colgan had to “fall” out of bed in a morning and crawl around to move independently. My wife can do neither of these things. I must lift my wife out of bed onto a wheelchair, shower her, help her go to the toilet, lift her into a chair, off the chair, in and out of a wheelchair, into a car, out of a car, you get the idea. She gets tremendous nerve pain in most of her body (although not at the same time) and painful spasms in her legs. I must dress her, undress her, change soiled clothes, do all laundry, make her meals, get her drinks, feed her when she lacks the strength, prompt medication, take care of all affairs; and, when all this is done, I am also her husband.

I watch her face screw up with pain and hear her scream when I lift her. ( Please don’t ask, “why don’t you have a hoist?” – this would provoke a diatribe that I don’t have the energy for right now ) Despite taking handfuls of painkillers and anti-spasm medication of varying hues, sizes and strengths, she still feels a lot of pain. And every time I witness her in pain or lose control of a bodily function, I think to myself “is this the one?”. Is this the occasion that flicks a switch in her mind to begin to feel that the struggle isn’t worth it. Because I imagine that’s how it starts – that one instance of pain too far, that one loss of control that makes a sufferer think “That’s it. Enough.” albeit briefly. And that thought intensifies with every subsequent episode until the sufferer starts to envision the practicalities of making it happen. I have the utmost respect and admiration for Mr. Colgan’s mother who, not only accepted his decision to end his life, but travelled to Zurich with him to be there at the end. To watch her son die voluntarily. The bravery which she must have displayed to go with him to Switzerland is something I can only aspire to achieve every day. I cannot, CANNOT countenance the idea of my wife wanting to kill herself. And yet, despite my gut reaction, when I consider it rationally, I can only come to the conclusion that anyone who despairs of feeling intense pain and suffering must have the right to make this choice.

I don’t intend to watch the BBC documentary because, as I hope you can imagine, it covers a topic which is far too close to home. As Carer’s Week begins on 13th June, my thoughts go to Mr. Colgan’s mother, the carers of the other people featured in Sir Terry Pratchett’s documentary, and carers everywhere who witness the person they care for in pain and suffering, and think “Is this the one?” with the same feeling of dread as me.