Tag: Multiple Sclerosis

D-Notice on the D-word

There’s been an elephant in the room for the majority of this year.  A subject I brought up in Taboos and touched upon in Loss.  It’s something I know I have to prepare for but I don’t know how to.  I can’t even say it out loud very often – or, in this case, type it.  I’m not one of those people who relies on euphemisms to describe it.  I know what it is.  I’ve dealt with it before.  But this is different.  To be able to think about it in terms of what’s going on here, I have to ‘switch off’ my emotions.  Not an easy thing to do.

I’ve not raised the subject with MW.  Nor has she mentioned it.  I don’t know if MW has ever thought about it.  If she has, then I suspect it was some time ago, before her cognitive skills were starting to impair.  She has a certain sense of ‘not being with it’.  I don’t know if that’s the meds or the disease that’s caused it.  I’m not saying that she’s not aware of anything that’s going on around her but it all seems to go over her head.  She smiles a lot but it’s the smile of someone who doesn’t really understand everything that’s being said or done.  So I don’t go there.  I don’t want to be the one to introduce this into her train of thought.

I say that this has been hanging around this year, but, if I’m being honest, the subject’s occurred to me over the last couple of years.  It’s always in the background because MW’s MS is constantly deteriorating.  That’s a fact.  Right now, there’s nothing that can be given that will arrest the decline of the disease.  Symptoms are merely managed.  People have said to me “oh, but you’re years away from that, yet”.  They don’t know that.  I don’t know that.  The healthcare professionals who have spoken to me about the subject can’t make any predictions regarding time.  All I know, deep down, is that there is an inevitability.  The practical part of me knows I have to deal with it; I have to be prepared not only for the event itself but what happens leading up to and after it.  I know I’m not prepared for it.  Either emotionally or practically.  I know I’m burying my head in the sand, and I’m not the slightest bit embarrassed to admit it.

Today, a friend made comments about honesty, and how, when things are less than perfect in life, we shy away from the harshness of reality and mask it with the shine of things that are, relatively speaking, superfluous.  We can apply this shine either outwardly or inwardly.  Sometimes, it’s just as important to fool ourselves into thinking that everything’s alright.  And this is what I do.  Because, if I don’t, I’m afraid it’ll be the death of me.

Another regurgitation/choking/coughing fit this morning from MW left me in bits.  Again.  I’m starting to hear occasional wheezing, too.  I can’t do anything about it save lift her torso up for a few minutes and try and rub her back at the same time.  Not an easy feat, I can tell you.

I try not to let her see me upset.  I try to reassure her and not let her see that I feel like I’m helpless.  She’s deteriorating, and it always seems like she’s one coughing/choking episode from pneumonia.  All I keep being told is “there’s nothing we can do about it”.  And I’m not OK with that.

Totally unrelated: where the hell did this broody feeling come from?  And can it please sod off, I’m busy.

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.

Responsibility

Healthcare worker/careworker/social worker/anybody: “What do you want us to do re: YW?”

What do I want you to do?  HOW THE FUCK DO I KNOW WHAT TO DO?!?!  This is what I’m looking at you for.  A bit of guidance, share some of the load.  Not bounce the issue back to me.

I’m tired of all the responsibility.

Taboos

Following on from the last post, and those fears I touched upon, I had a conversation with my GP.  He’s not just *my* GP.

Out of the blue, he asked me a question that made me freeze a bit.  He wasn’t being cruel.  Just realistic.  He said he recognised the bluntness of what he was saying.  The conversation was vague but it’s out there now.

Loss.

I’m finding it hard to write this without making someone else’s grief about things here.  I know it’s not right but I hope they’ll forgive me, and that anyone reading this will understand why I feel this way.

Last week, we said goodbye to a friend – S.  S was only 32, and had fought MS for half her life.  I know her family more than I knew her.  They cared for her throughout her battle with progressive MS and were with her at the end.  To say that her passing was a shock is an understatement.  Like many diseases of this nature, MS didn’t provide the final blow.  That was left to pneumonia – a dangerous threat on its own, without having a compromised immune system.

I saw S twice in the three weeks before her passing.  First, when I took MW to look round a respite home, she was a resident for that particular week while her parents took a break.  She was asleep in front of the TV in the home’s common room.  She looked peaceful, relaxed, and rested.  And well cared for.  The home’s very good and seeing S so relaxed helped put MW’s mind at ease about staying there.  That’s important for any respite break – but I digress.

The second time was the day before she left.  In a hospital side room, in a scene that could have come from any TV show or film.  Machinery, tubes, cables – I’m sure you’ve seen something similar, either on a screen or in real life.  Her mother had told me a few days before that she was in hospital and was extremely poorly.  We visited her while MW was in hospital for an appointment.  Spent a little of what we now know was precious time with her.  S had been given some glass butterflies.  Her mother gave one to MW while S had another in her hand.  They were linked.  Like two wings of the same butterfly, I guess.

The MS that S battled was similar to that which MW has.  She was the only person I know or know of in a similar position.  I know what her family had to do on a daily basis.  Which is why I wished with every fibre that S would recover.  That life wouldn’t be so cruel to someone so young who didn’t deserve to leave so early, or to a family who shouldn’t have to face the prospect of losing a daughter or a sister in her prime.  I also know that S didn’t deserve to suffer as she did, nor did her family who saw the effects every day.  She’s no longer suffering or in pain.

I’m no altruist in this regard.  It didn’t take long for her family to realise what was going to happen.  But I wished and willed S to recover, partly for selfish reasons.  Not to prolong any suffering but for reasons of hope.  Because her passing plays on my fears of inevitability.  Of a taboo subject and thoughts that we can’t – daren’t – articulate.

Meanwhile, we fondly remember a beautiful butterfly who has now spread her wings.  And, if the music at her funeral is anything to go by, is head-banging to her heart’s content.

My heart, laid bare.

(Warning: long read.  If you’re a TL;DR type, now’s your chance to quietly fuck off.)

I originally put a version of this post out in a quiet part of the internet that nobody ever sees, and certainly isn’t connected to this blog.  That’s because the subject is so personal – even a bit shameful – and I was scared that someone who knew me would read it.  I’ve become adept at keeping a bit of a shield between me and this blog.  I’ll occasionally link to here from Twitter but never the other way round.  It’s safer that way.

So, why am I posting this here now?  It’s not going to change anything, is it?  It’s that, frankly, I’ve had enough of hiding it.  Of holding it in and trying to swallow the hurt.  Because I’m hoping that catharsis will bring some kind of relief.  This is what you get told by counsellors, talk about it.  I can’t talk to MW about it.  I just can’t.  Primarily, the pain.  Secondly, MS has slowly taken, and continues to take, her mind and her memory.  Often, talking to her is like explaining things to a child.  Reason enough.  This would be a pain too far.

But I still feel this way.  I have cared for MW since her diagnosis over ten years ago.  This blog has gone a little way to allow me to express my feelings and thoughts.  You might argue that this post is long overdue.  You might be right.  I hope you understand why I’ve kept it to myself for so long.  Despite the fact that MW and I spend almost 24 hours a day together, I feel so, so lonely.

MW is predominantly immobile, can’t feed herself, can’t control her bodily functions, is partially blind; this disease has robbed her of almost everything.  This is pain enough for her.  To raise this subject with her would be too much.  She’d feel like what’s left of her world is being taken away.  I know I would.  I know she would, too.  You get to know this about a person.  The disease and its effects scare me and make me feel like I’m in permanent mourning.

However, I’m only 44.  I’m not so old as to be content being more a carer than a husband – despite the title of this blog.  I’m still a man, a human being.  I’m not a machine.  I still want…no, I still need real love, sex, intimacy, kisses, the touch of a woman who is in love with me as I with her.  A lovers’ relationship rather than one as carer and patient, brother and sister, father/daughter, the closest of friends, you choose which term is appropriate.  I still have fantasies.  Trust me, I’m no prude, I have an imagination.  I’m not easily shockable.  But those fantasies might as well be just a silent film in my head.  There’s no outlet.

So, what does someone in this position do?  Leave?  “Yeah, I know it’s not your fault.  I know you’re all vulnerable and stuff, and reliant on me, but I’ll be away now.  It’s not you, it’s me”  I know MW would be devastated to hear that.  No matter how ‘right’ that might be.  It would push her to do something stupid.  I know.  She told me once in an unrelated conversation.  Plus, what kind of arsehole would do that to someone so vulnerable?  This isn’t her fault.  She never wanted this shit in her life.  Neither of us did.  She can’t do anything about it.  How can I make her feel like less than a person?  It’s not fair.  There is still a love between us, even if it’s not the same kind of love as ten years ago.  That love has changed irrevocably.  I have my memories.  Memories of laughter, those glances between lovers, walking hand in hand, weekends cuddled up together.  I remember all those things.

But today, it’s all just history.  Memories that seem like the yellowing pages of an old storybook.  I know fine well that the same thing is happening to MW.  She misses the touch of a husband, of a man who loves her in a way that she wants to be loved.  Only it’s not possible now.  It’s not a psychosomatic thing, it’s no longer physically possible.  And neither of us can change anything.  No matter how much we want to.  What can I do?  Let me turn this around.  What would you do in this position?

Meanwhile, my tears are getting bigger.  Hidden, obviously.  Like I hide a lot of things.  Anyway, I’ve written it now.  Wade in to me if you want to.  Go for your life.  I don’t care anymore.  I can’t hold it in any longer.