Author: husbandforacarer

Promises, promises….

In my last syrupy offering, I wrote about the importance of a social network – including but not limited to online networks.  I also said I’d expand on the feelings of isolations that can be felt by carers.  Here goes…

Today, for the first time, I spoke on the phone with a friend that I’ve only communicated with online.  This friend has MS.  This friend is also a carer.  This friend has just suffered the bereavement of somebody vitally important to them.  The loving relationship between my friend and the person they lost was the most important connection between them.  But the death also meant my friend lost a big piece of the small network of support they have which helps them cope with their many daily struggles.  My friend is so good at managing their own condition plus managing another condition as a carer.  However, today’s conversation gave me the over-riding feeling that my friend feels incredibly isolated while trying to contend with everything on a daily basis.  Their bereavement has knocked them out of kilter and they’re struggling to re-gain the strength they’ve shown in dealing with the hardships that life has brought them for some years.  I hope I was able to give some kind of comfort.  I’ll return to my friend later.

After listening to my friend, I couldn’t help but remember my own experiences of isolation.  Our conversation revealed many parallels in our lives.  Prior to my wife being diagnosed with MS, we both worked for the same department in the Civil Service.  We had a circle of friends (albeit they’d known my wife longer than me) with whom we’d socialise on a regular basis.  When we gave them the news of a diagnosis of MS, they were initially supportive.  A lot of them told us the same thing, “If you need anything, just ask us – even if it’s just a chat”.  Disabled people and carers all over the world will have heard this statement or something similar.  And I’m sure you know which of your friends you can rely on for that kind of help.  What I wasn’t prepared for were the people who I thought were good friends who sank without trace.  One particular couple from this circle worked in the same building as we did.  They’d park their car near our home, which was only 10 minutes’ walk from the office.  We’d have a drink, have a laugh, etc. – the usual things you do with friends.  After we told them of my wife’s diagnosis, this couple would still park their car near our home.  Yet they’d pass our home twice a day and never knock.  They came in to see my wife only once.  And that was because they’d passed the house while I was standing on the step waiting for a supermarket shopping delivery.  I think they felt shamed into asking to see her.  We saw more instances of this kind of boycott during the first year after my wife’s diagnosis.  I can’t tell you how angry I’d get.  I wasn’t bothered about them coming to see me but my wife was suffering greatly after her diagnosis.  How could they do this to her?  What sort of friends were they anyway?  To abandon her at the first sign of adversity?  As the years have passed, I’ve learned to recognised who can and can’t be relied on.

But this behaviour isn’t limited only to “friends”.  I was telling the story of the boycotting friends to my family during a get-together.  Amid much head-shaking and tutting, I was encouraged to move back to where I’d grown up.  I remember vividly the words said to me by one in particular, “Don’t worry, we’ll support you."  Support.  We were desperate for support.  During the three years we lived near them, we saw my family……… twice.  Twice.  Three times if you include bumping into them in a town centre.  You can choose your friends, but you expect more from family surely?  I was tired of being let down.  I felt very responsible because it was my family who’d promised much and delivered little.  This did nothing to improve my increasingly cynical view of people in general.  My wife and I were both pretty miserable living there despite the fact that the house we lived in was ideal and that we had breathtaking views from the windows.  We decided that we’d move somewhere that would suit us as we’re both "city” people.

Which brings me to the importance of social interaction.  I won’t repeat everything from my last post – you can read here the effect that Twitter and the internet in general have had on my life.  I want to say this to my friend (who I’m sure will recognise themselves from the first paragraph) : you have so much to confront every day and you cope with it with smiles and love.  You face down indescribable challenges with smiles and love.  YOU are one of those inspirational people that you spoke about.  But you must look after yourself too.  Every once in a while, you must be selfish because, if you’re not, you’ll damage yourself.  I’m going to tell you something that you’ve heard before – if you need anything, even a chat, just ask.  And, because I know what you face, I mean it.

I ran this post past my friend prior to releasing it and she’s happy for me to tell you about her website for her son’s condition – Ring 14.

EDIT: 15.55 25/06 – I feel it’s important to point out that the one family member that was outstanding was my Mother.  But, as she’s in her 70s, there is a limit to what she can do.  Besides, not being near her now means she can live her life as she sees fit.

Schmaltzy but heart-felt.

I seem to spend an inordinate amount of time on Twitter.  You could say that I’m addicted to it.  There.  I’ve said it.  But I don’t feel a sense of catharsis or guilt.  I want to revel in my Twittericity – to wallow in it indulgently.  Twitter allows me to talk to people, and I like talking to people.  It doesn’t have to be a long conversation with one person.  It can be the odd quip here and there.  Twitter is perfect for me because I can have lots of little chats with lots of people at the same time.  I can dip in and out of conversations as and when I like.  So, although I use Twitter a lot, I LIKE Twitter a lot.  But I really, REALLY like everybody who talks to me on Twitter – yes, including you!

This post isn’t designed to be an advert for Twitter, it can do its own promotion far more effectively than me.  It’s an appreciation and thank you to everyone who’s spoken to me there and elsewhere on the internet.  Because, like 50% of all carers in the UK, I can feel isolated.  Isolation has pretty much been a running theme since my wife was diagnosed – since May ‘05 we’ve pretty much spent every hour of every day together.  And that’s not a healthy state of affairs.  Friends and family alike have also fallen by the wayside.  But these are points that I’ll expand on in other posts.  I don’t want to focus entirely on the negative aspects of my life here.  I want to write something positive ( if only avoid ruining every reader’s day ).  Whilst the number of positives caring has afforded me is small, each one is precious.  One such positive is the opportunity that the internet gives me to talk to people around the world: other people in similar circumstances as me, people affected by MS, or – in the case of Twitter – just a bunch of people with interests similar to mine.

Through Twitter, I’ve been able to talk to lots of lovely new people and I’ve even met one of them ( take a bow @lindylou120 ).  I’d like to meet more followers and followed.  I’ll have to find a way to make that happen.  Even if I don’t get to meet them, I enjoy the way that the Internet gives me an unlimited scope for contacting people.  You might say “Well, that’s pretty obvious as that’s what the internet was designed for”.  I agree.  But we take it for granted now, and I want to pause to reflect on its profound effect on my life.  As I say, it’s precious to me.

I’ve also had the good fortune to talk to a group of Italian people who are all affected by MS.  I was looking around for an international viewpoint of how MS is treated and found the website for the Italian association devoted to MS and those affected by it.  Despite not speaking a word of Italian, I signed up to their forum and started talking to a few people there.  And when some of them opened their own live chat room, I went with them.  They’ve helped me teach myself Italian over the past two years and they’re firm friends now.  We’ve been to Italy twice now and met one particular couple each time.  Later this year, they’re coming to stay with us.  Great, huh?

Well, now.  Having read and re-read this post, I realise it’s starting to sound schmaltzy.  I hate being schmaltzy ( however, I do like the word “schmaltz” but I digress ) so I’ll knock it on the head.  I guess I’m saying thank you to anyone and everyone who chats to me.  And I hope you don’t mind my enthusiastic tweet-feed ( I get this confused with timeline ) but it helps me feel a little more “normal” ( a hateful phrase but one that fits most precisely ).

End of schmaltz.

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.

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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.