Tag: carers

Dogma breeds hate

dogma. noun.  A principle or set of principles laid down by an authority as incontrovertibly true.

hate. noun.  [as modifier] denoting hostile actions motivated by intense dislike or prejudice.

Given the lessons we have been taught by history, surely it’s unthinkable that any government would marginalise a section of people to such an extent that its citizens would openly attack that section of people in public?

Right?  Wrong.

I didn’t know whether to blog this or not but there’s too much in my head for a series of tweets.  I’d flood my timeline on just this one subject.  This week, I’ve come across the tweets of Thomas Hemingford.  Mr Hemingford is a man who cares for his disabled wife.  I know nothing more about his personal circumstances than what’s written in his Twitter bio but I have read his tweets with a mixture of emotions and thoughts – incredulity, sadness, anger, empathy.  Mr Hemingford was out for a meal with his wife and a friend when he and his wife were subjected to a diatribe from a man who Mr Hemingford describes as a “Tory”.  He described this verbal attack on both him and his wife in great detail in his tweets which have since been collated via Storify.  I urge you to go and read them.  For one individual to behave in such a despicable manner doesn’t shock me as much as it should.  I’m a realist and am resigned to admit that there will always be people who will attack disabled people – mostly through ignorance or a desire to disguise their own inadequacies as humans.  What shocked me more while reading this is the attitudes of the other diners around them.  I won’t relay the entire incident here – you can read that in the links above – but attitudes veered from open support to tacit approval signalled by doing nothing during this ‘15 minute’ attack on a disabled woman and her husband and friends.   

I wrote above that the attacker was described as a “Tory”.  Mr Hemingford’s tweets go on to say that the attacker said he “supported Cameron” and that the onslaught was like listening to the Daily Mail.  I talk to a few people who are affected by disability and there are two things that make them angry.  One is the current government, and the other is the Daily Mail.  The present UK government is bent on cutting huge swathes from the amount spent on public welfare.  On the face of it, the thrust behind these welfare cuts is to weed out fraudulent claims but what’s happening is more of an ideologically driven push against the welfare state.  To assist in this aim, the Govt. has sought to cast aspersions on the character of those who take money from the welfare state.  One phrase from a ministerial speech reads, “where is the fairness…for the shift-worker, leaving home in the dark hours of the early morning, who looks up at the closed blinds of their next-door neighbour sleeping off a life on benefits?”, whilst the Prime Minister speaks of generations languishing “on the dole and dependency”.  This is the official line from politicians.  Their right-wing supporters in the press will go even further using words like “lazy” and “scrounger” as part of their anti-welfare rhetoric.  

This harassment has been extended to disabled people.  [quick aside, the phrase “disabled people” feels a bit awkward to me but I don’t have an alternative at present]  Disabled people have been portrayed as being freeloaders off the state in the press, in getting “free” cars at taxpayers’ expense**, being more capable than they’d have you believe.  The comments sections of any UK paper or periodical that writes about the economy will include responses on how the disabled are a burden to the taxpayer, regardless of the editorial line of the original article.  The New Statesman recently published an article about how media coverage of disability and disabled people has become more negative over the last decade and more.  It makes interesting but very frustrating reading.  Particularly as the coverage seems to have made some people feel “empowered” to openly harangue the disabled, with the relentless stream of invective from parts of the media shaping their opinion.  It’s in the papers so it must be true, right?

As MW’s carer, I’m fortunate in that I’ve never witnessed any attack on her.  And she’s not reported anything happening whilst she’s been out with anyone else.  That’s not to say I’m not paranoid about it.  Whenever we’re out I’m always watching the reactions of others towards MW, and us both.  On the whole, people are understanding and kind.  I have seen some facial expressions which might have belied a less neighbourly attitude but nothing has been said.  And certainly nothing on the scale of that suffered by Mr Hemingford and his wife.  From his tweets, both he and the friend that accompanied them displayed enormous dignity during and after this attack.  I cannot say that I would do the same.  I’d rather not have to find out.  I’m sure the Hemingfords would have wanted to avoid it too.

I call what happened to Mr & Mrs Hemingford “an attack” and the person who perpetrated it “an attacker” because that exactly what it and he were.  They’re as offensive as any other assault on an individual of a discriminatory nature – just because there’s not yet a crime of disability hate doesn’t mean it’s any less of an injustice.  If we were discussing a similar attack of a racist or homophobic nature, for example, the attacker would have been dealt with far more harshly by those around him.  Since no-one else (bar their friend) made any attempt to defend the Hemingfords, I can only surmise that discrimination against disabled people is acceptable to a significant section of society.  That this individual seemed to assume he had implicit support for his views, and his attack, from both the popular press and from the Government of the day makes it more revolting still.

History teaches us that economic difficulty has been a catalyst for authority to behave in an abhorrent manner towards minorities and weaker groups within society for its own end – with appalling results.  George Santayana was right, “Those who cannot remember the past are condemned to repeat it”.

We have learned nothing.

** From the Daily Mail – http://www.dailymail.co.uk/news/article-2005576/BMWs-thousands-friends-relatives-disabled-use-luxury-Motability-cars.html – sorry, I won’t link directly to the Daily Mail.

Still going. I don’t know about strong.

Before I carry on I want to clarify something about this blog.  Apropos of nothing at all other than something that came to mind which burrowed its way in and won’t go.  This is my space to vent – this is my outlet, if you will.  I don’t have a wide circle of people that I can talk to at the drop of a hat about what I’m thinking/feeling, etc., so this is my way of letting some of it out.  If you’re looking for witty, inspirational writing on how caring is a challenge to conquer, to face with a smile and overcome head-on, and how life is a big bag of love and roses then you’ve come to the wrong blog.  I try not to be overly pessimistic but I am realistic.  I’m aware that what appears in this blog is pretty dark, even miserable at times.  I’m not sorry for that.  What’s happening is a struggle and I will reflect that.

I’m feeling a bit stressed at the minute.  Which is to say more so than usual.  I had another panic attack the other week.  Cue thinking I’m having a heart attack; cue frantic call to paramedic then ECG and blood pressure tests; cue calling neighbour to come round to sit with MW if should need to go to hospital; cue feeling utterly ridiculous, hopeless and pathetic, especially when the physical diagnostic tests came back all clear.  I have high self standards.  Those standards tell me that I ought to be able to cope with everything thrown at both of us because, outwardly, I’m the healthier of the two of us.  Even using the word “stressed” makes me feel feeble.  My mind and body tells me that isn’t true.  When I say I’m a “bit stressed” I must admit that I’m more than a “bit” stressed.  I’m stressed to the point of my body giving me messages to rein it in a bit and calm the fuck down.  But it’s easier said (or thought) than done.  When I list it all, I guess I’ve got a fair bit to worry about.  

I’m stressed about MW’s constant deterioration.  She can’t move her legs voluntarily at all now.  The only movement comes with spasm – so her legs have to be manipulated to ensure proper blood flow.  Her arms are losing strength but gaining ever more tremor – sorry, fasciculation (must be accurate).  Independent feeding and drinking are becoming more difficult.  She’s allergic to the morphine patches she’s just started – not to the morphine but to the adhesive patch.  They make her skin blister.  The MS nurse tells me that it’s important to maintain skin integrity because sores and patches of skin inflammation will make her MS symptoms worse.  And then there’s the blood clot.  The injections are nearly at an end but we’re in contact with so many medical people that I’ve asked if they do a health equivalent of frequent flyer miles.  Or at the very least Nectar points.

MW’s father is ill as well.  Her parents live at the other end of the country from us so we can’t see how he is at first hand.  MW hasn’t seen her Dad for almost two years.  Not that they don’t get on – they do.  It’s just that the distance between them and their respective health difficulties has made it pretty much impossible for them to see each other.  Her Dad has a form of leukaemia and he’s been suffering with some symptoms recently which has laid him pretty low.  These may or may not be connected to the leukaemia but her Mum is worried enough to not feel confident enough to come up and see us.  It’s been almost six months since she visited us.  MW’s parents are both in their 70s now so their good health can’t be taken for granted.  The thought is always in the back of her mind that her parents won’t be around forever.  It’s a struggle trying to keep MW from worrying because it will make her MS symptoms worse.  

I’m also worried whether the money we have coming in will stretch far enough.  I know I’m not alone in this.  But MW has developed a penchant for buying clothes that she doesn’t need just because they’re pretty.  Thing is, her memory and mental acuity are worsening and she forgets what she’s bought.  She goes out with a carer a couple of times a week and when she gets back she’s laden with little carrier bags.  None of the items are expensive individually but it all adds up.  It falls to me to ensure that what we have coming in will cover everything going out plus be able to eat.  We don’t have a hedonistic lifestyle, neither of us drink or smoke, but we want to be able to live rather than exist.  Frankly, it’s a struggle.  I’ve asked her repeatedly not to do it.  I’ve got angry.  I’ve pleaded.  I’ve spoken to her rationally because she’s not a child.  Yet she forgets.  I’m having to slowly realise that she’s losing these abilities, and that she is, in a way, becoming more child-like.  I don’t want to treat her like she’s six and give her “pocket money”.  Maybe I’m just waking up to the fact that this is another irreversible change in her personality caused by those damn sheep in her brain (on an MRI scan MS lesions are little white blobs which MW called “sheep”).  Whatever the “cause”, it’s another tiny chink in the relationship.

In short, I feel like I’m being closed in from all sides and struggling to keep my head above water.  I spend a lot of time inside my own head – if that makes any kind of sense – trying to make sense of everything and remain sane throughout.  I try to second guess MW’s MS so its effects are managed as best as possible.  I try to ensure that we both are as comfortable as we can be given the circumstances we’re in.  I feel myself getting angry and frustrated on a more frequent basis.  Somebody used the word “inspirational” to me the other day but I genuinely, genuinely cannot fathom why.  I know it was meant as a compliment, and I am flattered.  But when I look at what’s happening to me and how I’m dealing with everything, that is the last word I would use about me.  I’m just trying to do the best I can and it ain’t easy.

As I wrote in the first paragraph, I know this blog can be a bit grim.  I’m not going to apologise for that.  I don’t spill all this out on Twitter because people would soon get sick of it.  I’d rather get it all out on here – this is my blog, for my own benefit because, without it, I’d be in a much worse place.

Dodging bullets

I’ve got to tell you, last week was pretty scary.  I’d noticed MW’s leg to be a little swollen for a couple of weeks – actually, it was much longer than that but they’ve swollen before and was told it was just benign swelling.  I must admit to rarely thinking it’s *just* anything considering the severity of MW’s symptoms.  So, when the District Nurse called to look at yet another pressure sore, I asked her to check the swelling.  “Oooh, it is swollen, isn’t it?  It’s about 2cms bigger than the other leg and it’s not hot or anything but when I go to the GP’s surgery later this morning, I’ll chat to her about it.  It could be a DVT.”

Fucking hell!  A DVT.

In a previous life, I worked in the Civil Service.  An environment that loves to abbreviate words and phrases wherever possible – thus giving those phrases an implied importance way beyond their actual significance.  I guess the health services do the same for speed in time-critical situations.  But a DVT – or Deep Vein Thrombosis to give it its Sunday name – is a pretty frightening prospect and one that belies its otherwise harmless abbreviation.  I felt a bit of a chill when she said it.  Partly because I knew how serious it could be and partly out of guilt at letting this swelling go unchecked.  Truth is, as a carer, I never know when to push the “panic button” or when to let something take its natural course and see what happens.  I panic at the slightest change in MW’s symptoms but I can’t go shouting to the nurses or the GP for the smallest thing, can I?  That’d be ridiculous.  It’s tempting though.  I’m no professional at dealing with this and there’s no training to help a carer cope with what gets chucked at them.

So, back to the swelling.  The nurse rings from the GP’s surgery later that morning and said that the Dr wanted to see MW later that day.  Appointment booked.  We turn up and MW gets examined.  The swelling is a cause for concern and the GP refers MW as an emergency admission to the DVT clinic at the hospital with a letter explaining her findings during the examination.  Half an hour later (as it begins to snow like hell!) we’re at the DVT clinic waiting for a blood test.  More examinations and bloods drawn, and an hour or so wait for the results.  The possibility of a DVT is still there but they won’t know without a scan.  MW is given a clot-busting injection and a scan is booked for the following morning.

Back at hospital for an ultrasound scan.  Not easily accomplished given MW’s lack of mobility but we get there.  They find a small clot in her calf but it’s not in a deep vein area, and there’s nothing above the knee – which would give greater cause for concern.  Dodged a clot-sized bullet.  A DVT can travel up the body and can be dangerous if it reaches the lungs.  Fatally so.  I’m no expert and I ain’t going to Google the damn thing but I’m content with what the Dr said.  Actually, the Dr was very soothing when delivering the news to us.

I’d noticed that MW was very, very nervous about it all.  I comforted her (well, I think I did) by saying that it’d been caught before anything dangerous occurred, she’d not displayed any of the symptoms that would tell us that the clot had moved, etc, etc.  Although I don’t know who I was trying to convince.  Her, looking pretty scared at the whole thing?  And who could blame her?  Or me, who was chewing himself up for not acting sooner.  It’s hard work trying to give practical care and emotional support at the same time, while you’re shitting yourself at the responsibility of it all.  Fuck knows how MW copes with it all in her head.  She’s the one experiencing all these symptoms, and relying on me and others to make sure she’s not at risk.  I know she relies on me and trusts me.  I guess I’m scared of making a mistake and putting her in danger.

Anyhow, MW’s to have daily injections of a clot-busting drug for 6 weeks.  She decided against taking Warfarin orally.  That was a scary prospect too far, I guess.  Plus she didn’t fancy having regular blood tests at hospital.

It’s made me think that I’m treading a fine line between being alert and being on-edge.  There’s no way around it.  I’ve just got to learn which to be and when.

Overcoming weakness

What was I saying about thresholds?  I’ve just spoon-fed MW her entire evening meal tonight.  For a 46 year-old adult who would ordinarily be in the prime of her life, that has got to be one of the most ignominious things to have to happen to you.  In addition to the tremor that already exists in MW’s arms, she is now losing strength and movement in them.  Tonight she couldn’t hold a teaspoon so she allowed me to feed her.  I’ve done this before but only for one or two forkfuls/spoonfuls where necessary.  This was the first time I’ve done it for the whole meal.  She’s being stoic about it but I can see in her eyes that it’s upsetting.

In addition, MW told her mother about the loss of function in her arms.  Cue tears and self-blame from her mother for not living nearer – her parents live some distance away.  Upset all round.

There have been better days.

First foot.

Threshold.  I’ve heard or seen this word a few times this week.  It’s New Year and my Mother belongs to a generation for whom the tradition of ‘first footing’ is still alive – crossing the threshold with items to bring good luck for the year ahead.  

The same word cropped up in a couple of other conversations over Christmas/New Year.  I was talking about MW’s condition with friends who I’ve not seen or spoken to for a while.  It struck me that a progressive condition like MS* can be looked at as a series of thresholds that have been crossed.  That is, each new symptoms felt or each lost ability to do something independently is viewed as a threshold crossed.  Or, in the most recent case: each new, more powerful medication required to alleviate the effects of symptoms on her body.

This year has already seen MW cross another threshold.  The neuropathic pain she feels has been so bad that she’s exhausted what the specialist nurse considers her first line of attack for pain relief, i.e. a combination of tramadol and pregabalin.  MW has now been prescribed buprenorphine patches – a very strong opioid analgesic.  In essence – morphine.

To me, morphine brings with it connotations of palliative care.  Not the kind of phrase that instils positivity, despite the fact that palliative care is something that is intended to help pain relief in a wide range of chronic conditions, not just those towards end of life.  The morphine is helping but the pain is tolerable rather than eradicated.  No-one’s actually said as such but the demeanours of both the nurse and GP, and the way the drug is handled by pharmacists, tell me that this is a fairly major development in MW’s condition and medication history.

Other “thresholds” have been crossed in the last few weeks.  MW is suffering more from weakness and tremor in her hands/arms.  Increasingly, there are times where she can’t hold/control cutlery and cups – particularly when tired – and I have to feed food and liquids to her.  I also have to “feed” meeds to her as she can’t hold and control anything as small as each tablet she has to take.  And MW’s inability to move is causing new pressure sores on her legs/feet.  Inflatable “boots” have been ordered to try and alleviate them thanks to a fortuitous surprise visit from a district nurse.

So, we first foot into another year of MS.  With a bit of luck there won’t be too many thresholds to cross during the year ahead.  

*Disclaimer:  Yes, I know that MS isn’t an automatically progressive condition but this blog pertains to MW’s condition which *is* progressive.  Why didn’t I clarify it?  I am doing.  This is the clarification!

Hiding in a plain site.

Recently I was approached to take part in a radio programme on MS and caring which is planned to be broadcast on a regional station sometime in the near future.

A producer had come across this blog and had wondered if I’d like to give my account of having MS in my life and being a carer.  I must admit that it was a tempting offer.  Perhaps I might get the opportunity to debunk a few myths about MS and disability?  I might also get to tell the story of being a carer.  About how, for me, they are full time responsibilities – more than full time.  Maybe I could redress the iniquity felt by carers when faced with the dreadful press we get from various corners of the media.  It was an appealing idea but it didn’t take me long to decline it.

Why?  Because while I’m happy to write about how being a carer affects me – and that’s what this blog is – I’m not prepared to concede control over what comes out about MW.  If she decides to say something herself, that’s fine.  But it won’t come from me.

While I’ve given a little information out about me – and us – I like being able to hide behind the anonymity an on-line blog gives me.  I may change my mind in the future but this is how I feel now.  If I was going to participate meaningfully in a radio programme, it would have been ludicrous to say “I’m not going to answer such and such a question” or “I’m not prepared to tell you that about me”.  Particularly if I wanted to give a full and honest account of life as a carer, which it merits.

I’m also wary of people’s reaction to what I write.  It’s a little scary putting your head above the parapet and opening yourself up to the opinions of others.  I’m not going to pretend that everything’s a bed of roses in life, and sometimes I’ll want to write something that’s critical of the life I find myself/ourselves in, or even critical of MW.  I have a lot of thoughts born of frustration and this blog allows me to vent those thoughts.  And sometimes the subjects I don’t write about are the ones that affect me most deeply.

I’ve also become aware that, very occasionally, people will project their perceptions or assumptions of my character onto me, which have been mostly positive but don’t take into account that this blog describes what happens to me.  It doesn’t give the full picture of who I am.  I’m not naïve, I can imagine the stick I’d get if those people were to think that the real me doesn’t stack up to their perceptions.  I’m as sensitive to criticism as anyone.  More so – I don’t have a very thick skin.  Right now, I don’t think I could handle the grief that might come from exposing everything about me and my life on a radio programme.

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.

Dear blog, Happy 1st Birthday!

I’ve just realised (at 21:09 BST) that this little window on my personal world is exactly a year old today.  In that first year I’ve made some new friends, met some lovely people, and had some of the most kind messages of support and encouragement.

I’d do individual thanks but there are lots of people to mention and, a) I’d be frightened to leave anyone out and, b) this post would get all Gwyneth Paltrow and no-one wants that.

I will say thank you to anyone and everyone who’s taken the time to read anything on here.  It does mean a lot.

I’m not done blogging yet though…..