Tag: fear

Crossroads

As often happens with this blog, I don’t really know what to write. I just feel the need to get something out of my head. Sometimes, it’s something that I’ve seen or heard that’s touched a nerve. Others are me trying to make some kind of sense out of the jumble of thoughts and feelings that swirl about me. This post is a result of the latter. I’ll warn you now, a lot’s happened in a short space of time. This is likely to be a very long read. Give it a while and it’ll be serialised over a week on Radio 4, read by an actor whose voice you recognise, but whose name you can’t quite place.

MW is in hospital with an infection. At least the fourth or fifth in a row. She’s been diagnosed as having a urinary tract infection (UTI). This is the risk you run with a suprapubic catheter – one that’s permanently inserted through your skin into your bladder. She’s needed a catheter for a few years now. UTIs come and go with, now nonchalant, regularity. These infections vary in severity – sometimes to the point of requiring an emergency ambulance. This was one of those times.

As I have been informed, MW is a sepsis risk and any time she passes little or no urine either through the catheter or by bypassing the catheter and urinating normally is a real cause for concern. Medical treatment is required immediately. We’d been giving MW oral antibiotics by the bucket recently but she didn’t seem to improve. Confusion and delirium, along with being overly sleepy and/or unresponsive, were the signs that something was definitely amiss.

What I wasn’t prepared for was the conversation I had with a specialist. The specialist. I’ve written before about how I don’t really notice deteriorations in MW’s condition – I see her all the time, so changes are too small to take in – it’s only when there’s a catalyst event that it all makes sense. This was one hell of a catalyst event. The conversation was stark and I wasn’t prepared for it. “We ought to discuss what happens when MW has an infection that they can’t bring round? Do we want them to resuscitate?” Sorry, what?

MW has deteriorated a lot since the specialist last saw her. Swallowing and breathing have both been compromised to a degree. That’s due in part to the morphine patches being administered. But taking away the patch would bring back the pain. It’s a shitty trade off. Also, the MS is making her weaker. Her nerves are increasingly damaged. It would be a good idea to have a PEG feeding tube inserted into her stomach. But only if it’s assessed that she can withstand the surgery.

A PEG would give better access, long term, for administering meds and fluids/nutrition. Explaining this to MW is easy. She’s already agreed that it would be a good idea. She was quite animated when she agreed, but I don’t know how much of that was independent thought and how much was her just going along with the explanation given by the specialist. Explaining something that has obvious benefits is much easier than trying to get her thoughts on whether she wants to be resuscitated or not if she arrests.

Do Not Resuscitate. DNR. I sometimes hate the way that abbreviations can, on the surface, trivialise very important matters. A DNR order. Fucking hell!! Am I prepared to just allow her to ‘slip away’? “I’m not saying it’s going to happen tomorrow, next week or next month…”. No, but we’re no longer playing with hypotheticals, are we? This is a when and not if. This isn’t life insurance for the ‘just in case’. It’s planning for an eventuality expected in the not-too-distant future that I’m perfectly happy to stick my head in the sand over.

This brings with it a ton of questions. Is staying at home in her best interests? Particularly as I can’t watch over her 24/7. What if I miss something? I’m not medically trained. I panic at the slightest thing as it is. I can’t – and don’t want to – make an arbitrary decision about a care home but I’m not sure I’m emotionally equipped to continue what I’ve been doing. I’m fucking scared!!!! I don’t know what to do. What I do know is that people are looking at me for answers. This isn’t a conversation that MW has ever been willing to instigate and, now, I doubt she’s able to.

So, to the crossroads – own home or care home? I’m at a point where I know a decision needs to be made or, at least, a timetable needs to be drawn up for making sure MW gets the best care. Every attempt at drawing a conclusion only brings more questions. And in the middle of it all is a 50 year-old woman who didn’t ask for any of this. A woman who is incredibly vulnerable. A woman who, in her more lucid moments, is probably very scared. A woman who still smiles despite all the pain, all the infections, all the being pushed and pulled about, and never complains. And I don’t know how to have these conversations with her. I just don’t know what to do.

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.