Tag: caregiver

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.

Self esteem

Isn’t it great when your self esteem is so borked – I mean, truly fucked – that you spend your time secretly trying to alter yourself so that your attributes match that list of attributes that others seem to find attractive or likeable or popular?  Better looking, more intelligent, more empathetic, better dressed, etc.  Wondering why Person X is fawned over while, no matter what you do, you feel like…how is it described in the film ‘The Equalizer’?  “When you look at me, what do you see?  The answer’s nothing.  …like a bottle cap or a piece of lint…just a thing to remove”

Where’s my self esteem?  In the toilet, where it belongs.

Maybe that’s the missing attribute.

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.

We took MW to see her family again.  When I say ‘we’, I mean my Mum and I. It was MW’s Dad’s birthday while we were there.  He’s been fighting leukaemia for a while, now.  To tell you the truth, we’re surprised that his fight is still on-going.  We were given a prognosis for him that included a finite amount of time. Therefore, each celebration – birthday, Christmas, etc. – always carried the possibility of being his last.

This is not to say that MW didn’t enjoy seeing her Mum and brother, too.  She misses all of her family.  Her Mum does all the caring for her Dad, and can’t come to see us.

Although I may have said the same after the last visit, this may well be the last time we do this trip.  Five days’ of travelling and care with only the most basic of equipment have left their mark.  My Mum is in her late seventies and her health is deteriorating, too.  I can’t ask her to keep running around as my assistant whenever I get the urge to do this.

Also, I’m afraid that, as MW gets weaker and weaker, I won’t be able to lift her in the same way as I’ve been able to do.  As she’s losing core strength, I’m losing the ability to control each lift.  I don’t want there to be an accident that could be avoided.

It was good for them all to see each other.  There were a few tears, both on arrival and when leaving.  But, for five days, MW felt like she was part of her family again.  And I’m glad she did.