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Poignant

So, we’ve just been to see MW’s parents.  In particular, her Dad.  He’s been fighting leukaemia for the past couple of years and can’t get up to see her.  MW’s Mum looks after him as I do their daughter.  They’ve not seen each other for over 18 months.  I hope this is not the last time they see each other.  We don’t know whether MW’s Dad will take a sudden turn for the worse – as has happened before.  I do know that MW’s MS will deteriorate further.  She coped as best she could while we were away, with only me and my Mum to care for her, with no equipment, but there’s a limit to what she can endure.  It’s not easy for her to put up with 9/10 hour drives and not having the correct kit to keep her safe.

It was tough for her to endure and hard work to make happen.

But worth it.

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The Fear

The Fear.  I hate The Fear.  I have The Fear now and I don’t know what to do about it.  More accurately, I don’t know what to do about what’s causing The Fear.  So, as famous people take to Twitter, I’m taking to Tumblr in a bid to make sense of it all in my head.  You can have a read, if you like.

MW is in hospital.  She was taken in on Friday with a temperature of 39.8, rapid breathing, and a lot of confusion.  The district nurse who saw her said she’d be better off in hospital where she could be given IV antibiotics.  Tests showed another UTI, and two patches of what appeared, to the doctor, like cellulitis (which is new to MW).  I’ve seen her in some states thanks to MS but this seems different.  She seems more distant, more disorientated.  As I’ve written before, MW has shown signs of dementia-like cognitive impairment – memory lapses, confusion, and so on.  I know that infections will exacerbate any pre-existing cognitive impairing.  It’s just that she seems so frail along with it.  I was feeding her a bun and a drink tonight and had to remind her to swallow.  She didn’t seem to know that I was trying to give her some food/drink, even though she’d agreed to have them.  I don’t know what part of this is due to the infection (presumably reversible with medication and care), what is caused by the MS (more damaging and potentially more permanent), or whether it’s a mixture of the two (and will that part caused by the temporary infection become a more permanent part of her MS).  Frustration leads to attempted rationalisation of what’s going on, which leads to The Fear.

MW was asking about her Mum coming to visit her, so I explained why she couldn’t.  We live at the opposite end of the country from her parents, but it’s mostly due to her Dad being ill and that her Mum cares for him.  This is not news to MW but tonight she seemed to get quite upset by it, which is very unlike her.  She normally understands the situation surrounding her Dad, yet it was as though she’d forgotten all about it.  I told her that her Dad’s very ill, which seemed to upset her.  I tried as best I could to put a positive slant on things, telling her that they’re doing their best and that they’re winning but she still looked quite teary.  I was telling her that she was winning too and that we’d get her right, and back home – trying to instil a spark of determination in her – which seemed to work.  In truth, I was trying to blink back my own tears.

Which brings me to The Fear.  I have the fear of losing her.  Not just in the sense of her not being the same person as she once was – mentally, I mean.  But also losing her physically, really losing her.  Dying.  A feeling not helped by the nurses performing ECGs on her due to a raised heart rate.  With it being Easter, and staffing levels being low, there was no doctor around tonight to ask for an opinion or to ask to expand on their reasoning behind the tests.  The nurses are asked to do the tests, not to evaluate the results and explain them to an anxious husband.  I came away from the hospital at end of visiting time feeling very uneasy.

So, I’m lying here at gone 2 a.m., watching fuck-knows-what on TV, trying to make sense of it all (getting more frustrated by the minute that I can’t contact the MS specialist nurse for another 36 hours at the earliest – thanks a bunch, Easter), and trying to keep The Fear away.  I know where The Fear leads if unchecked – panic attacks, anxiety, deep depression.  And I really have The Fear of The Fear.

Confession.

Forgive me, Tumblr, for I have sinned.  It’s been two months since my last post session.  And woe betide any Tumblr that isn’t updated regularly.

I’m not clearing the path for an announcement that I’ve suddenly had a conversion to faith.  I haven’t.  I’m a quiet atheist.  Which is to say, if you have a faith, good for you.  I don’t share it but I won’t have a dig at you about it.  I don’t believe in spirits, ghosts, fairies, etc. either.  Which is a good thing because MW has had more ‘sightings’ of things/beings that has unnerved me a bit.  Not in the sense of “what might there be in the house?” but in the sense of “what effect is MS having on her?”.  When you’re asked to “stop the dead people from moving me and picking at my sore”, it’s hard to know how to react.  I don’t want to make her feel stupid or humiliate her – these things are evidently very real to her.  But I can’t help her with what is plainly not there.  All I can do is reassure her that she’s not being moved, there’s no-one picking at her sore, and there’s no-one/nothing in the house that has any intent to harm her.  So far, she’s believed me.  What’s caused her to see these things?  I have no idea.  She does have a susceptibility to urinary tract infections, and she had one earlier this year.  But the frequency and repetitiveness of the sightings can’t be down to just that.  My next guess is that they are either side effects of the interstellar array of pain medication she’s taking or there are MS lesions affecting some part of her brain that is responsible for governing her perception of reality.  I had a chat with the MS nurse.  She reckons that side effects would be a likely explanation.  Right now, the benefits of the medication outweigh the risks of the side effects, so we carry on.

Other issues include: an overzealous care company employee who looked to impose a hospital bed on MW.  Apparently, the bed’s too high and is causing problems for one of the carers.  None of the carers had mentioned this to me, nor had they written about it in the daily log.  My insistence that current sleeping arrangements are more than adequate was met with, “I’ll have to take this to social services as a ‘safeguard’ issue”.  This sent me into a bit of a spin.  The idea that, out of the blue, someone can, de facto, impose a change on your living arrangements with little or no regard for how it would affect you is pretty frustrating.  I suggested a compromise but that was refused by said minion.  A compromise that was accepted following lengthy consultation with social services and an occupational therapy visit.  In future, I’ll be extra careful of the influence of care companies.

Right, I’m off to do my Tumblr penance.  Go in peace.

Visions.

Well, the last half an hour has just freaked me the fuck out.  MW is currently in bed.  I went in to check that she was alright before making a night-time drink.  She said, “Don’t think I’m stupid but what would you say if I said I told you I’d been talking to your Dad?  And that he’s all around us?”.  My Dad’s been dead for ten years now.  She grabbed my hand and said that he would have to “show himself”.  She continued to talk to thin air for a minute or two.  I had no idea what to say or how to react.

MW has NEVER shown any interest in the occult or in mediums.  The opposite is true, she was always very sceptical about it.  I remember she once went to see a fortune teller as part of a group but her demeanour towards it was very sceptical.  I know people change over time but this is the first time she’s behaved like this.  It’s really scaring me.  Not the subject matter, I don’t suddenly believe she’s developed a ‘gift’.  I assume she’s either reacting to her medication, or her lesions are affecting whichever part of her brain is responsible for hallucinations and other related symptoms.

We celebrated our tenth wedding anniversary on Sunday.  I look at how she was then, and compare that with how she is today.  It’s frightening, and very upsetting.  Tonight’s incident is another in a long list of examples of how MS has changed her.  I’m scared.  I’m scared of losing her completely.  I’m scared of the future.  And I’m tired of being scared.

Displacement

MW has taken to having a stuffed toy dog lying on the bed next to her.  This is a substitute of sorts, for a real dog.  She’s wanted a dog for a while but I’m uncertain.  Not because I don’t like dogs or anything, quite the opposite.  It’s just that I know I’ll be the one that would have to look after a dog.  Do the walking, cleaning up, training, etc.  I feel selfish writing that.  I know that MW loves dogs and has had one before.  But that was long before MS.  She’s still confined to bed for long periods because of this bastard pressure sore, so everything is sort of on hold anyway until she’s able to be got up and seated in her chair for longer periods.  I know I shouldn’t try and psychoanalyse her from a distance but when I see her with this toy dog, I can’t help myself.  I’ve known MW for 14 years now and this is new to me.  Does she see a dog as a surrogate child?  We don’t have a family, and I’d understand how a pet would act as that surrogate, no matter how clichéd that seems.  Or does she feel starved of affection?  Is it something I’m doing wrong?  I try to ensure that I do show her affection because, after all, she is still my wife.  Her having MS is not her doing and I do love her, even if our relationship stretches the definition of a typical husband/wife marriage to its very limit.

There are things I don’t even put in the blog because they’re too personal but I will say that this disease has robbed us of almost every ingredient that you’d expect to find in a marriage.  I’d expand on what’s been lost and how I feel about it but that’s not what this post is about.  Maybe I’m not ready to write about some things just yet.

My point is that seeing MW with this dog is a shock.  She’s never been one for large amounts of cuddly toys.  When we met, she even described herself as being a bit of a cold fish.  This latest example of change in her is the complete antithesis of the woman I met and married.  It feels like she’s undergoing (or undergone) an infantilisation of sorts.  I feel more and more like a parent than I am a husband.  Yet, my immediate response to seeing this change is guilt.  Am I responsible for her behaviour through the way I’ve acted and reacted to all the challenges her MS has presented?  Could I/should I have acted differently as a carer?  Would this change have happened anyway as a result of the increased lesions on her brain?  She already shows symptoms of altered cognitive and memory states, including hallucinations, so it wouldn’t be beyond the realms of possibility.  I don’t treat her like a child.  One or two of the carers do occasionally and it grates on me because the MW I know, the MW I married, would have *hated* that.  However, she seems to tolerate it – no, more than tolerate, she seems to enjoy it.  I don’t say anything because, if she does enjoy it, who am I to jump in and berate them for it?  I keep expecting the old MW to pull them up on it.  But she doesn’t.

I know I get wound up by the worry of all the things that have happened to her.  I can’t help but show that by my reactions to things like her choking, or when she sleeps so heavily, it takes some effort to wake her up.  I keep saying this but I am doing my best.  I haven’t got a manual to follow or anything.  I keep telling myself that the dog is a child surrogate.  But only because that stops me from going into a spiral of self reprimand alternated with guilt.  It’s a valid enough reason and I can buy it.  Hell, I can even share the feeling.

None of this is made any easier by the news I received over the last week of two MS sufferers I knew – rather, one I spoke to on Twitter, the other I knew of through his wife and carer.  Both of them passed away during the latter end of 2014, one on Christmas Eve – both of them shocks.  I’ve not told MW about them because of her being around the same age as they were.  She’s already concerned about her age and what MS has done to her by this age.  I don’t want to add to that by giving her this news.  Besides, she didn’t really know them, only through things I’d said.  Meanwhile, I see any change in her as being something else to mourn.  I try harder than anything to keep it hidden but I can’t help but be scared of what will happen next.  Am I looking at a finite amount of time with her?  Because I have no idea how to start to cope with it if it’s true.  And I don’t think a dog would make it easier.

The blues.

I keep saying that this account is a means for me to occasionally rid my head of all the shite that infests it.  But what if the shite in my head isn’t really coherent?  Or just plain fucking miserable?  Do I self censor?  Keep quiet?  Or just say ‘fuck it’ and let go, come what may?

I’ve spent most of this past weekend either in bits or moping.  It’s hit me that MW is now fecally incontinent.  In reality, I’ve known this for a few months but I figured that instances of it were just anomalies that could be explained and it would all right itself in time.  No.  They weren’t.  It won’t.  There have also been moments where MW has displayed symptoms that I imagine have parallels with Alzheimer’s disease.  An insistence that something exists where it doesn’t.  A memory that seems vivid but has no basis in reality.  Disagreements follow.  Tears.  Reassurances.  More tears.

Imagine a grieving process that is like death by a thousand cuts.  This is how I feel.  Like the life I once had, and the life I thought would be a given, is being taken away very slowly, one cut at a time.  That MW is being taken away one piece at a time.  And it hurts like fuck.  There’s always something new/different to grieve and I don’t know how to deal with it.  I wouldn’t know where to start, or if I have the right to ask anyone to listen to me try.  Would I if my circumstances were reversed with someone else?  I don’t know.  I like to think so but we all would like to think so.  The net result is isolation.  Loneliness.

“Are you alright?”

“Well, it’s like this… [opens hitherto well-barriered floodgates of emotions and experiences.  Watches enquirer’s expression alter irrevocably.]  erm…so, anyway, how are you?”

It’s like a very long blues song. And that’s a lot to shove on to someone.  I don’t know if I can, or should, do it.

An open letter to the Labour Party.

I’m not a politically active person normally.  I didn’t start this blog with any particular stump to thump.  Despite my long-standing cynicism about politics and politicians, the referendum on Scottish independence made me think.  And, in the time-honoured tradition of people wanting to air their thoughts on a subject, I’ve written an open letter.

To the Labour Party:

I’m not going to begin this by introducing myself and explaining about me.  It doesn’t really matter who I am, or what my background is, or what I do, or what particular issue I have close to my heart at present.  All that’s relevant is that I care about what happens in this country, politically.  And I would like you to do the same.

For the last four and a half years you’ve been cajoled and cudgelled into following the prevailing ‘austerity agenda’ by various groups.  The fall-out of the Scottish referendum gives you one opportunity to shake yourselves free of your apparent compulsion to pander to those who drive that agenda.  To assume that the independence referendum in Scotland is purely about the amount of power transferred away from Westminster is to have paid little attention to the debate over the past two years.  The ‘Yes’ campaign was so strong because it recognised that people think politicians have stopped listening to them, stopped representing them.  Time and time again, ‘Yes’ campaigners highlighted the issues that they care about deeply: poverty, social justice, the privatisation of the NHS, to name a few.  Issues that affect the people they know, people they see about them.  Not the issues that Westminster politicians assume are important and need to be ‘sold’ to the electorate.  Don’t assume that every ’No’ voter feels differently from the ‘Yes’ lobby about those issues.  The fear of the fiscal consequences of independence was very powerful.

England doesn’t have a nationalist party in the way that Scotland has in the SNP, or an equivalent of Plaid Cymru in Wales.  Nationalism in England means those ragtag alliances of groups displaying barely concealed bigotry, and have little or no real interest in policies other than those that look to shape a society which only conforms to their prejudices.  Any organisation in England labelling itself as nationalist is not one I wish to be associated with.  It’s too late to attempt to begin a new, socially just political movement from scratch in time to make a difference in the next general election.  In my opinion, there’s only one shot at stopping the UK’s inexorable slide into becoming a country where people matter less than money.  That’s you.  Or, at least, it’s the thought of what you could be.

Do NOT waste the next eight months on arguments over the “West Lothian question” or the possibility of an “English parliament”.  These are potential black holes into which precious time and energy will get pulled while the real issues that affect people on a daily basis are ignored.  You’re being watched and judged, not only by Scottish voters – who may well prevent you from ever reaching Government again – but by those of us who stood outside the debate for Scottish independence but agree with the ‘Yes’ campaign’s assertion that politicians don’t seem to want to fight for the kind of country they want to see.  To accept that even one food bank is tolerable is wrong.  To do nothing while people suffer, even die, as a result of sustained cuts to services is wrong.  To allow the health service that belongs to every single citizen to wither and be sold for private profit is wrong.  This slice of realism written by Linda Tirado gives some insight into the dystopian future awaiting the UK in the event of another Government like the one we’ve endured for the last five years.  Or a more conservative one, whether a coalition or a single, governing party.

YOU are the only political organisation that has a realistic opportunity to return a sense of social justice to this country in 2015.  Otherwise, the chance will be lost in a frenzy of fragmentation; both in terms of disaffection among voters who will desert you for parties who they feel represent them better, and of potential devolution of government – which would lead to the dilution of any cohesive effort to avoid a future that looks like that set out in Ms Tirado’s book extract, if not for the whole of the UK then at least for part of it.

While ultimately unsuccessful, the ‘Yes’ campaign was as strong as it was because it was able to take people with it.  It gave people something to believe in.  The passion with which its supporters showed their support and galvanised others left me feeling envious.  I envied their belief.  I want a political party I can believe in.  Not one with empty promises.  Not one that betrays its principles and uses political expediency as an excuse for doing so.  

If you should lay down a set of socially just principles to which you’re committed.  If you give people like me something to believe in, a reason to inspire and energise a real groundswell of support, any attempt to ridicule or obstruct you can only be in vain.  But it’s up to you.  It’s up to you to decide how important people are to you, and what you want to stand for and be remembered for.  Time is running out.  Please don’t disappoint me.

It’s a 24 hour thing.

This caring malarkey is a 24 hour thing, and the last 24 hours have been…challenging.

19:15 – I notice MW’s catheter isn’t draining, which is not unusual but it’s happened three times this month, which *is* unusual – so, I start doing what I can to help.  By this I mean I changed the bag to get rid of any blockages there, rolled MW a couple of times to see if a positional change would make a difference, and gave the tube a gentle wiggle at its entry point into her abdomen to see if that helped.  No change.

20:00 – I ring district nurse (DN) overnight team.  They arrive about 15 mins later and try (not that hard, it has to be said) to change the catheter.  They can’t do it.  MW must go to hospital.  As she has this grade 4 pressure sore on her bum, she needs an ambulance to be able to transport her safely – besides, the DNs had left the catheter in but had left it unstable.  Apparently, this meant that there could be an eruption at any point, given the right circumstances.  Lovely.  So, they call a non-emergency ambulance – it’ll be with us “within the hour”.

02:00 – Following three phone calls assuring us we’d not been forgotten, the ambulance arrives.  I carry MW off the bed and place her onto the stretcher, and she is taken to hospital.

By 05:10, an on call urology Dr had changed catheter twice (!) and MW had had two bladder scans performed.  The catheter had been changed but wasn’t draining.  Actually, this isn’t so unusual directly after insertion.  I especially didn’t think anything untoward had happened given the time of night and the fact that MW had only had a small amount of liquid to drink.  Dr gave the choice of staying until drainage begins or go home and if regular DN notices anything odd, back to hospital.  MW says she wants to go home and an ambulance is arranged to bring MW home.

My Mum (who insisted on coming with us to the hospital because she “wouldn’t be able to sleep anyway”) was shattered so I brought her back home then drove back to hospital, ready to wait with MW until the ambulance is ready.  When I get back to the room in A&E, MW has changed her mind and just wants to get back home to sleep.  I get a nurse to bring a wheelchair.  I lift MW off the stretcher onto the chair.  While MW’s in my arms, the nurse notices that MW has messed and cleans her up.  I get MW into the chair and the nurse takes her to the front of A&E while I get the car.  I lift MW off the chair and struggle like hell to get her into the car.  Nurse accompanying us to the door asks me “Do you do that every day?”  "Erm… yes.“  "Oh my God, I’m filling up here watching you”.  I have no idea what else to say.  So, I thank her and drive home, doing all the lifts in reverse on arriving home.  By now, it’s 0630, and I’m exhausted.

So, we’re at home and, after about 90 mins sleep, the regular DN calls with specialist wound nurse (TVN) for a scheduled visit to look at the sore.  There’s still no catheter drainage.  I explain to the nurses what happened overnight.  I roll MW onto her side so the TVN can inspect the pressure sore and change the dressing and…

WE CAN SEE THE BALLOON END OF THE CATHETER STICKING OUT BETWEEN MW’s LEGS!

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(Image from: http//www.registerednursern.com/wp-content/uploads/2008/10/supra-pubic-catheter.jpg)

The hospital Dr has inserted the catheter into the hole in her abdomen, kept pushing until the balloon on the end has come out of MW’s body, between her legs. (I’m sure you don’t need me to be any more graphic than that).  The nurses are aghast.  One of them had heard of this happening but had never seen it.  The other was appalled.  Fortunately, they were able to change the catheter properly with minimum fuss, and were kind enough to help me clean MW and the bed after it drained about a litre of liquid straight away.

Each of our gasts are well and truly flabbered at what happened.  I am more relieved than angry (and tired) about it all.  As of right now (01:06, 29/08), everything is still working well, and we’re all trying to catch up on sleep.  I’ve napped through the day and hope to get a good 7-8 hours now.

There’s no 9-5 with being a carer – it’s truly a 24 hours a day job.