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

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

Missing the bigger picture.

I’ve written before that, because I’m with MW pretty much all of the time, I tend not to recognise the major changes in her until there’s a catalyst event to make it obvious to me. By major changes, I mean things like no longer being able to walk, needing to be fed, moving from being singly to doubly incontinent, etc. This isn’t an exhaustive list but I hope you get what I mean.

MW had been pencilled in for an electric wheelchair test in early 2014. That had to be continually postponed because she was confined to bed with a horrific pressure sore. The sore has healed to the point where the test could go ahead. MW was using the prospect of an electric wheelchair as something to look forward to whilst in bed. So, this March, we went along to the test centre. MW couldn’t use any of the demonstration chairs as there were none with enough body/head support. The Occupational Therapist (OT) asked questions and took notes on MW’s condition, symptoms, and (dis)abilities, while the rep from the chair supplier talked to us (that is, to me) about the chair’s capabilities.

During these conversations, it became apparent that MW now has serious issues with arm movement. She has practically zero movement in her right arm – thus couldn’t control an electric wheelchair with this hand. She has slightly more movement in her left arm but, again, it’s severely limited. I don’t think MW could control an electric wheelchair. The supplier rep showed me the attendant control and took me through a test, which I went along with. However, I couldn’t help but think it was pointless. If MW can’t use an electric wheelchair independently, it becomes a useless exercise. The possibility of some independence is the whole point of using an electric wheelchair, isn’t it? A further test would take place in 12 weeks with a properly supported chair.

A couple of weeks ago, the chair was delivered and we had the second trial. The controls were moved, I lifted MW into the chair, and the supports were adjusted. The trial was on. Only, MW’s left arm wasn’t going to be up to the task. We got it to reach the control but all that happened was that her arm clenched (due to spasm) and pulled the control to the right, moving the chair in a circle. There were some looks shared between the OT (a different OT, this time), the (same) supplier rep, and me. We all knew the truth of the situation – that MW was past the stage where an electric wheelchair would be suitable – but who was going to be the one to say anything? The OT gave an option for moving the controls to a more central position and suggested a further trial. Fair enough. Might as well exhaust everything before acknowledging the inevitable.

I haven’t actually got a point to this, other than realising that MW can’t move her arms at all any more. She can no longer hug me as her arms are usually crossed in front of her torso- all hugs are one way affairs. As I say, it takes a catalyst event for me to realise the extent of changes to MW’s body and abilities. And not only for me. MW’s been pretty quiet since this second wheelchair test. I ask if she’s OK or if anything’s wrong, and all I get is a reflex response of “Yes, I’m fine. Are you alright?”. Which doesn’t help.

Her quietness could also be a result of getting sick of me refusing to believe her when she tells me there are ‘creatures’ that cause her pain in various areas of her pelvic region. There are no creatures. This is ‘formication’ or ‘parasthesia’ – call it what you will – and, according to the MS specialist nurse, “there’s nothing we can do”. I’m going to wait until the neurologist appointment later this month to confirm that.

Or her quietness could just be due to the summer. The heat is making her lethargic and wanting to sleep more. What I do know is that we’re both realising that she’s losing more and more of herself to MS. We expect this. Nevertheless, you get so caught up in micro-managing the symptoms that the effects of the disease get missed, and it needs a prompt to realise just what the full picture is.

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.

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.

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.