A couple of numbers

Four thousand five hundred and seventy-two. That’s the number of days I’ve been providing care for MW in some form or other. Right from the first symptoms of her MS: a bit of a limp and eyesight problems. Back then, it was just guiding her around as much as I could. There have been many stages of gradual progression of symptoms.

The first year following diagnosis: coping with blackouts and begging her to eat because she stopped eating, thinking she’d get fat from being immobile. Dealing with her continence issues, including stopping a London – Edinburgh train at Doncaster so I could take MW to the disabled toilet and change her clothes, as there was no disabled toilet on the train and she’d had hot coffee spilt on her. Her gradual loss of mobility: lifting her in and out of cars, on and off beds, chairs, etc. Feeding her for the first time: an unsaid but mutually acknowledged sense of a loss of dignity.

There have been good times post-MS. My 40th birthday year. The year we went on holiday to Europe. We met friends and had fun gadding about the continent’s fashion capitals. Getting giddy because we were ushered past the velvet rope in the Louvre to get that bit closer to the Mona Lisa (one of the few advantages of being a wheelchair user). Having a private tour guide to show us around the Vatican and Sistine Chapel. Shopping together in Milan and the hotel’s delicious chicken sandwiches. My eyes get a little more misty each time I look at the photos. Of how things were.

One. The first. Today was the first day I told someone official that I can’t cope any more: I can’t keep going to the well of strength because it’s almost dry. MW is in hospital after her swallow became compromised. I couldn’t tell if fluids were going down properly or not. There was no evident deliberate swallow. She’s due to have a PEG tube fitted and that operation has been brought forward. The risks involved are scary: more so given MW’s progression.

This hospital admission has been the most upsetting because she seems so weak now. I think I’ve cried every day bar one. Tonight was rough. Her breathing rate was a real cause for concern as it had got so low. Every conversation seems to have that sombre tone – do you want us to resuscitate in the event of…?; do you want us to ring you during the night if her breathing rate falls below…? I can’t even bring myself to type the words.

Those of you who know me already know that I lost my Dad to cancer two months before MW and I were married and five months before her symptoms began. What you may not know is what happened when he died. I was all set to go across from where we lived to my parents because the Macmillan nurse had said things were getting towards the end and I’d said I wanted to be there. I’d also started with panic and anxiety symptoms and had a doctor’s appointment that same day. I’d travel across the next morning.

You’re probably way ahead of me already. I did travel across the following morning, thanks to a lift from a friend of my Dad’s (now no longer with us. Brian was one of the kindest, most selfless men I’ve ever had the privilege of knowing). A journey of 110 miles, give or take a mile or six. Twelve miles from their home, my mobile rang. He’d gone. I’d not seen him at the end. I got to their house to see his body lying in a hospital bed in their front room. Shock, sweet tea, grief.

Looking back, I preferred it happen that way. I couldn’t watch him take his final breath and go. I know I will have to be there when MW takes hers, whenever that will be. I know she needs the comfort. I know she needs the reassurance and love that we – her family and I – will provide. I’m just not ready for this to happen now. This deterioration just seems so sudden. There seems to have been no time at all between listening to her giggle with her Mum and a carer and seeing her in hospital, reduced to being made up of hourly observations, fluid balance chart, IV fluid intake rate…

This pretty much all boils down to me saying that it’s not fair. She doesn’t deserve this. Why her? Why does this thing keep making her worse? Why is it going to take her from me? Screaming won’t change anything, I know that. I’m scared. I’m struggling. People keep telling me that if I wasn’t this way, I’d not be human. It means I care. That being with her despite this also means I have strength. Somewhere, I know this – I just wish that strength didn’t hurt so much.

Dear Dad, 

When I was
small, you held my hand.

When I was
growing up and needed you, you held my hand.

I left home
and started my own life, you were holding my hand.

When my
life took me further away from you and Mum, you were holding my hand. 

My life
changed, and I started afresh. There you were, holding my hand.

Time and
again, you led me around the Railway Museum…..by the hand!

When I got
ill and grew weaker, you were holding my hand.

Then.

Illness
came for you. So, I held your hand.

When distance
came between us, I held your hand.

As I heard
your voice on the phone, I held your hand.

When all I
can do is think of you, I’m holding your hand.

For the
rest of my life, Dad, I’ll hold your hand.

And I’ll
never let go.

I love
you.  Your daughter.

Milestones

This year has brought milestones into MW’s life.  She’s recently turned 50.  The day itself was fun.  Some friends came to visit and made her day and she had cake and balloons.  It was good for her – and for me – to have a house full of people and laughter.

MW hadn’t really had time to get used to being 50 when we learned that her father passed away the other week.  They’d not been able to see each other for over a year – MW can’t travel such a distance because her MS is too advanced, her Dad had leukaemia and had deteriorated significantly since we last saw him.  This meant that neither he nor MW’s Mum, his main carer, could come and see us.

It’s been a challenging time since we learned of his death.  MW has cognitive and memory issues, and I thought she’d need to be reminded what had happened.  There are moments where she seems to forget and others when it’s obvious that she’s thinking of him.  There’s a deep sadness in her demeanour, a real low mood.

Given that she couldn’t get to see him while he was still with us, she can’t get to today’s funeral.  Which is a mixed blessing, I suppose.  She can’t say goodbye to him but she’s not surrounded by reminders that he’s gone, which avoids provoking more low mood.

We’ve written something to be read out on her behalf, to make sure that she’s involved in a small way.

Movement – or lack thereof

They don’t teach you about this in carer school – how best to manage an acute, chronic condition on a weekend when frontline health services are either unavailable or greatly reduced?

If you’re eating, you may wish to look away now.

MW has an issue with her bowel, i.e. it doesn’t function properly at all.  Her MS-affected nervous system causes her intestine and bowel not to move correctly and the medication she takes to counteract pain – opioids, etc – list constipation as a side effect.  It’s touching cloth…sorry, touch and go as to whether I enrol her into Constipates Anonymous, where she can say “Hello, my name is [redacted] and it’s been 14 days since my last significant stool”.

I’m not taking this lightly.  I’m trying to make light of a situation that, frankly, is making me fucking seethe.

You see, she takes a lot of medication to deal with her bowel problem.  Oral softeners and laxatives by the shovelful.  None of which seem to have made any difference at all.  In the last few days, community nurses have given an enema and a suppository.  No effect.  Last Friday, the nurse team asked for a stronger enema to be prescribed.  I had to go out, leaving MW in the capable hands of the carers, expecting to return home to a card from the chemist asking me to pick up the item the following morning.  Got home.  No card.  Hmmm…..fair enough.  I’ll just go to the chemist in the morning and see if they’ve had a prescription faxed through.

Later that night, I get a message from the carers telling me that the GP rang while I was out and spoke to MW.  Bear in mind that this is MW’s named GP and that MW has little understanding of conversations or memory.  And that this GP – who has access to her full medical history – should be fully aware of this.  I ask MW about the call and, sure enough, I was met with a blank look.  From what the carers know, a prescription was sent to a chemist which I should pick up.  So I did.  Yet another oral laxative.

Long story short – I’m sitting here on a Sunday night, waiting for an ambulance to take MW to hospital on the recommendation of an out of hours GP.  MW still hasn’t shit.  It’s making her extremely sleepy – more so than usual.  I rang 111 (non-emergency out-of-hours NHS line) at 3pm.  I’ve been triaged twice, explained the situation to a nurse for half an hour, gone through the whole bloody thing again for a further half hour to a doctor and told that MW should be taken to hospital for an X-ray to see if there’s a blockage.  An ambulance has been requested.  MW has been waiting in her wheelchair for five hours.  Not as comfortable as she’d be in her recliner chair or bed.  I’m expecting a third call apologising for the delay and telling me that the ambulance service is under extreme pressure due to emergency calls.  Fair enough.  I get that they’re underfunded and overstretched.  But my main concern is that even if the ambulance arrives right this second, MW is going to have to wait for another 2-3 hours in A&E before being seen by a doctor.  There’s little prospect of an X-ray being carried out tonight.  The GP already told me that there’s no bed available for her to be admitted.  So, in effect, she’s going to go into a 15th day of no bowel movement.

The thing about this is that it’s not trivial.  Any exacerbation of one symptom has a knock-on effect on everything else MS-related.  Particularly fatigue.  That’s the beauty of a condition that affects the entire nervous system.  Something seemingly innocuous can have a severe knock-on effect on everything else MS-related, e.g. fatigue, breathing, regurgitation of food/liquid and subsequent choking/aspiration.

There’s no guidance for carers on what to do in these situations.  We make it up as we go along and hope to fuck that we don’t make a mess of things.  It’s a matter of trust.  And I’m running low on healthcare professionals that I *can* trust.

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.

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.