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.

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.

Fuck Friday.

#FuckFriday

This isn’t a hashtag about having casual, uncomplicated sex with other users of social media (if that flicks your switch, I’m not judging you, but you’ll not find what you’re looking for on this post). It’s my description of today. Because today can get fucked. It’s been a giant, festering turd of a day.

It started at 0645 with MW wanting to go to the toilet. So, I dragged my half asleep arse out of bed, lifted her off the bed and onto her wheelchair (with the vac dressing machine attached), took her to the toilet, picked her up, struggled to take her pyjamas and undies down, and sat her on the toilet. Cue alarm from the vac machine saying there’s a leak in the vacuum – meaning the dressing has lifted. Once poo had occurred and finished with, I lifted MW off the seat, took all her weight on one arm while simultaneously smoothing down the dressing and pulling up her undies/pyjamas with the other. The alarm eventually stopped. I got her cleaned up, got *me* cleaned up, and took her back to bed. I managed to get a bit more sleep till the carer arrived.

The nurses called late morning, removed the vac dressing, and replaced it with dressings to be changed daily. They’re not saying that the vac dressing isn’t working, they’re just not saying that it *is* working. There’s still an inordinate amount of wet exudate being secreted by the wound and Tissue Viability (the wound specialists) want to look at it.

These two events haven’t completely ruined the day but they’ve not conspired to start it off on the right foot.

The day went sideways about 1230. The GP rang. MW had bloods taken yesterday and this was the follow-up call now the results are in. MW is anaemic. Seriously anaemic. Not quite serious enough to require an immediate blood transfusion but bad enough to warrant investigation into it rather than just prescribe iron tablets. He wasn’t sure how to proceed but would contact haematology at the hospital, get some advice, and ring back. It wasn’t a lot of information but enough to start alarm bells ringing. MW’s Dad has leukaemia, so we’re quite au-fait with the terms anaemia, blood-count, and so on. Surely lightning couldn’t strike twice, could it?

When the GP rang again, his first questions were about MW’s MS, How long had she had it? Is she wheelchair bound? Etc. He was particularly interested in her bowel movements. He said that the blood test results were such that the anaemia could be caused by a severe infection, which would be tested for again by repeat bloods to be taken today. Or, if not, it would mean MW going into hospital for an endoscopy/colonoscopy to look for signs of other things, including bowel cancer. “Is there any blood in her stool? Are you happy for her to have the tests done?” I’m not kidding, I nearly shit myself. Although I deal with affairs on MW’s behalf, I don’t make decisions for her. Especially decisions pertaining to her medical care. I told the GP that MW can, should, and does make those decisions herself. The GP asked me to tell MW what was going on and ask if they could do the camera tests, if they should become necessary following the repeat blood tests. He’d leave it with me and a nurse would call for the blood.

After the call, I was left not knowing what the hell was going on. This GP had rung twice and left a couple of grenades behind. I walked through to the bedroom where MW was, told her what was said and confirmed that she would have the camera tests done. After some time talking over what was said, I went back to the front room, still worrying over what was going to happen because he’d brought cancer into the equation. As if we’d not had enough to deal with and overcome. I was scared. I won’t gloss over it. I was very, very scared. What would the spectre of cancer mean for MW? How would she cope if it were confirmed? It’s one thing to say “if they should be necessary” but once you mention cancer, it sits there. Joining all the other neon-lit elephants in the room.

I lost it. I started a panic attack, shaking like hell and with a squeezing sensation at the top of my stomach. I didn’t know who to turn to for reassurance. I rang my Mum (as you do when the shit hits the fan) and gibbered at her for a few minutes. I tried the MS specialist nurse – she’s on annual leave. I rang the MS Society helpline. A kind woman there listened to me half in tears, half in panic trying to make sense of the information I’d got today. She advised me to get back in touch with the GP. First, for reassurance. Secondly, to tell him that I’d got an awful lot of responsibility on my shoulders, and this news had sent me into a panic attack. It was the final straw that broke my system.

The carer had come back for her regular Friday afternoon appointment with MW, and very kindly made me a sweet tea. She could see I was struggling and stayed with MW to keep her occupied. MW was relatively calm, although she’d later admit to being confused by the whole affair. I rang the GP’s surgery, still in tears/shaking, and spoke to the GP again. He agreed to see me later in the afternoon. In the meantime, I tried to calm down enough to help the carer to shower MW. I spent over an hour shaking and crying.

The GP had more information at the appointment. He’d conferred with the district nurses and they’d agreed that there was a greater possibility of some interference between the pressure sore and MW’s bowel. This might explain the anaemia, the continued exudate in the sore, and might also explain why MW had needed two batches of antibiotics recently. The GP has spoken to a surgeon at the hospital and explained the situation with MW’s MS and the sore. They’ve agreed that MW will go into hospital and have a CT scan to start with. They’re hoping that a scan will reveal all they need to deal with the cause of the anaemia but can’t rule out further tests, including camera tests. To have MW in hospital would also give me a little bit of a break while her anaemia’s being investigated. GP also said that cancer was less likely because of the infrequency of MW’s bowel movement and the solidity of her stool.

So, the spectre of cancer looms a little less large now. I understand that GPs are duty-bound to be honest in their dealings with patients. I know that our GPs have a large workload and might handle things differently if their workload was less. I also know that I was wound up tighter than a bow-string BEFORE the first phone call informing us of serious levels of anaemia. The potential of cancer investigations in top of that was something I couldn’t deal with. I’m loathe to criticise medical staff without good cause, just to take frustration out on them. That’s not fair. This blog post is too long now for me to go into specifics but I think this could’ve been handled better. For MW. For me.

I try, as far as I can, to hold it together for MW. I not only have to deal with the logistics of medical service provision – sorting appointments, picking up prescriptions, making sure that enough medications/dressings are available at any one time – but I also have to explain to MW what’s going on. I need to comfort her too because she gets scared, gets confused. I can’t do any of that if I’m in pieces. I’m not in the same state as I was this afternoon, nor do I want to be. Because today’s been bad enough. Fuck it.

What is a man?

What does it mean to be a man? A pointed question. One that’s likely provoked many an hour of chin-stroking in people far more learned than me. It feels pertinent to me as a carer. Whether other male carers feel the same, I can’t say. I can only say that the question lodges itself in my head from time to time and provokes a good deal of self-analysis.

Recently, I found myself listening to Woman’s Hour on BBC Radio 4. I’m not so narrow-minded as to assume “Ugh, women’s stuff – not for me.”, or that I couldn’t find it interesting, so I didn’t tune out. After a few segments, the programme featured an interview with Jody Day. Ms. Day has founded Gateway Women, and written a book, Rocking The Life Unexpected, both of which were inspired by her search for support whilst grieving at the realisation that she will never have children. I listened to her story and how she described her feelings and experiences as a woman at the time her peers were becoming mothers. She recalled feeling at odds with people around her, as though she was viewed with a little suspicion. Perhaps she wasn’t fulfilling the stereotypical role of “woman as nurturer/carer”. This caused my pointed question to lodge itself once again.

Ms. Day’s story touched a couple of raw nerves. 1. I am a carer. 2. I have no children and won’t be having any.

If a woman’s role in life is to be nurturer/carer (I don’t believe this to be true, by the way, but please bear with me for the sake of this post), then what role does a man have? What’s the male stereotype? Provider? Hunter/gatherer? And do I fulfil that role? While I see this stereotype to be as outmoded as the idea of a woman’s sole role to be a nurturer/carer, it doesn’t stop me from questioning my place in the world. A feeling similar to that described by Ms. Day. I sometimes wonder how people view me because of what I do for MW. I suppose it shouldn’t matter but it does. It’s important to me to feel like I fit in somewhere.

I grew up in a shipbuilding area during the 70s/80s. The “hunter/gatherer” stereotype was everywhere you looked; originating at home, and reinforced at school or with friends. Add the same messages from the media and you have a powerful influence around you. When I was a kid, I assumed this was the stereotype to follow. When I began my working life (albeit not in industry) and started having relationships, I still assumed that I would be the ‘hunter/gatherer’ – especially when I thought about marriage and a family in my future (more on this later). I didn’t foresee that the ‘role’ I would have in my 40s would be so different from that stereotype.

Prior to being a carer, I didn’t know a single male carer. None whatever. Of course, I do now. I’ve met quite a few, either in person or via Twitter. But prior to 2005, I had no concept of what it entailed to be a man who is a carer. It was a cultural role that never existed for me to learn about. It’s very rarely, if ever, covered in the media. I know there are occasional media references to men who are carers but their role in the cultural world around us is never explained. It’s as though they’ve just beamed down and started caring. I didn’t get beamed down. I’ve been through (and am still going through) a self-examination in terms of who I am as a man, similar to Ms. Day’s self-examination as a woman. I’m not the “provider” that I expected to be. I’m not going to go into detail about our financial affairs but our circumstances dictate that MW’s share of the household income is higher than mine. I am a full-time carer. A role that doesn’t appear to be valued too highly, regardless of gender. I am a male, full-time carer. I have assumed the nurturer/carer role that society appears to deem only suitable to women. Even anthropologists are making inferences to the size of caring males’ testicles!! (Don’t believe everything you read!) When I tell someone I’m a full-time carer, the reply tends to start with, “Oh…..”, followed by a pregnant pause. They’ve no frame of reference for meeting someone who has that role by circumstance rather than by choice, as a care-worker might. It’s as though what I do – and by extension, who I am – isn’t “natural”. I might as well be an alien, or a talking animal. So, what does this make me in the eyes of other people?

The second raw nerve was about children. The Women’s Hour interview continued, and referred to women who find themselves childless by circumstance. (That is, they’ve not actively chosen to be child-free.) This is a truth I’ve had to come to terms with myself. I don’t have any children, and I’m not going to have any. Both Ms. Day and the interviewer acknowledged that there are a number of men who find themselves childless but their experiences are different. She’s right. But it’s no less hard to come to terms with. Just as I’m not a carer through choice but by circumstance, so I’m childless in the same way. MW and I wanted to have a family. We tried for ages but it didn’t happen. Abortion has been part of both our lives so we assumed that there was no biological issue. We considered IVF. However, at that time, our energy was taken up coping with my Dad’s illness. MW’s symptoms began very soon after Dad died. The severity of MW’s initial MS relapse put a stop to our dreams at the time, and its ever-debilitating progressiveness has done the rest. Although we both know what the reality of the situation is, we don’t discuss it often, save for brief “I wish we could have been parents” conversations, prompted by a TV programme or seeing a cute child when we’re out. But these conversations never last long. Rationally, I realise that caring for MW is too demanding to consider adoption or fostering. But I feel very much unfulfilled as a man – a propagator of my species. The prospect of my genes dying with me leaves a visceral scar.

Meanwhile, all my friends have gone on to become parents. (MW’s friends have tended to be a bit older than her so the dynamic is a little different) Ms Day spoke about how she felt a greater distance from her peers as they all had a common thread that maintains their interaction – i.e. having children. I guess it comes naturally for parents to talk about their children: schooling, growth spurts, etc., even to strangers. Becoming a carer is a great way to lose friends. Not becoming a parent is another. I sometimes sense people my age struggling to talk to me once they ascertain that I don’t have children. It’s as though their entire catalogue of conversation is geared towards their children – either as a conversation starter or as a specialist subject to the exclusion of everything else. Since I don’t have children, it’s assumed I won’t have anything in common with them – which I find strange – so conversation stops. Perhaps I should turn the tables and act awkwardly towards non-carers? No, maybe not.

You might read this and say, “what does it matter what other people think?”. And you would probably make a very valid point. The thing is, I look at myself in the mirror sometimes and wonder how I match up against the archetypal male ideal (which may or may not exist) that society/media would have me measure myself against. I also wonder how other people score me against that same ideal. Not enough to keep me awake nights but I do think about it.

So, what does it mean to be a man? Maybe it’s all just bollocks.

Life’s hard.

I’ve not blogged for a while as I’ve been moving house and crashing the car. In the same week. No injuries though and MW wasn’t in the car at the time. Maybe I’ll explain more in a future post – this post is really meant to keep the blog ticking over.

The new house is an adapted bungalow with the facilities MW needs to live day-to-day. It’s very good and we’re just getting to grips with everything it has to offer.

I now live in a community that has a few residents with disabilities. My immediate neighbour is a man who suffered a stroke and is now reliant on his wife to care for him. He uses an electric wheelchair to get about. He can’t be more than 5 years older than me.

Another neighbour, who’s lived here for 10 years or so, had an accident. I say accident, he was pushed off a bridge onto concrete. He broke just about everything and was in a coma for 9 months. He told me that he’s still determined to walk. He, too, uses an electric wheelchair to transport himself around and I’d say he’s younger than me.

There’s no inspirational motive for this post – no ‘moral to this story’. I merely observe that life’s bastard hard on some people.

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?

Epiphanies

It’s been a time of epiphany. Certainly for MW. Progressive MS affects MW in a way whereby we know things are deteriorating, which is to say that we deal with the deteriorations on a day-to-day basis, but don’t really notice how things have worsened. The times we notice the deteriorations are:

when we see someone who we’ve not seen for a while (and is honest enough not to resort to the catch-all “ooh, you look well” in the absence of anything else to say), and

when MW can no longer do something that she could previously do.

Recently, there have been quite a few times like those at number two. I’ve written in previous posts that MW’s legs only move through spasm but I’ve not made a point of highlighting this to her. Due to the fact that I have a fair idea what reaction will follow. Besides, I’d feel a proper shit for ultimately saying, “hey, your legs don’t work now”. No matter how delicately you try to phrase it, you’re pointing out something very distressing.

There was no need for me, or anyone, to point this out to MW this month. She’s taken to trying to move her legs because she now realises that she can’t. And she gets upset and frustrated. Which makes her try harder, which makes her more upset and frustrated when she can’t, which makes her try harder….. And so on, and so on. As I wrote right at the beginning of this blog, I have no idea how it feels to have MS or any other disability. I don’t know how it feels to lose the ability to do those things that most take for granted – walking, eating, writing, etc. I’m not going to try to guess how it feels because I don’t feel it. I can tell you how I feel to witness someone going through it or how I feel dealing with things as a carer. And I can write about how MW reacts to the realisation that these things are taken from her. But I don’t know how MW feels.

When I say she gets “upset and frustrated”, I’m really skimming over a wide range of emotions. First, there was mild amusement. Like when you try any challenge for the first time. This quickly passed into more determination. I could see the effort and determination she was putting into trying to move her legs. I saw that any response on their behalf would have satisfied her – a challenge passed. But the more the cycle continued – re-doubled effort to no avail – the less animated the response was. The more resigned the tone of speech. The quieter the report of realisation.

It’s one thing to try and get a handle on your own feelings. It’s another to try to be a support to someone else when you know that, “it’ll be alright”, are pretty much the most hollow and useless words you’ve got, yet they’re the first that spring to mind. What the hell do I say? What do you want to hear when you’re in that situation? Each epiphany is like a bereavement insofar as they are realisations of something lost. MW deals with it in the best way she can. She’s remarkably stoic. I don’t know if I could deal with it all with the same spirit.

There have been other epiphanies this month. MW’s Dad is pretty ill. He has leukaemia and his blood count has dipped very low recently. He has also been diagnosed with shingles which may or may not have a basis on or connection to his leukaemia. MW hasn’t seen her Dad for two years and she’s getting more concerned that she won’t see him again. He’s in his 70s, which isn’t the oldest parent you’ve heard of, but combine his age with his condition and you can understand her fears. We’re trying to organise a trip to the other end of the country to visit her parents. This feels like positive action so isn’t quite so sombre.

It was my birthday this month and MW got me a card. But when it came to writing it, she couldn’t. Her arm strength and control have now deteriorated to the point where she can’t write legibly. I’d have thought that this would have upset her more than it did. She apologised for having to get help with her message in the card and for her inability to sign it legibly. It didn’t matter to me but she was still very apologetic. Despite her apology, she didn’t seem quite as upset as she does with her legs. I guess dealing with one epiphany at a time is enough to be going on with.

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.