Author: husbandforacarer

Christmas adverts and events are springing up all over the place.  They only serve to remind me how I’m supposed to be all smiley and excited about Christmas.

And how, secretly, I’m not.  Only because my Christmas doesn’t resemble the image you see in newspaper/magazine articles, TV ads, other people’s social media, etc.  I’d dearly love my Christmas to be like all those images but, for various reasons, it isn’t.

And expressing how I feel only brings shaming and accusations of “Scrooge”, “miserable shit”, etc.  So, I’ve learned not to express it.  Thanks for that.

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.

I’ve realised that I have to be careful about how often I vent on social media and how much information I include when I do.  I’m not talking about personal information, I’m naturally guarded about that.  I mean, how gory and specific do I get when I vent?  E.g. I have to fight the urge not to reply to a tweet or a post about snoring.  See, I can happily go to sleep with MW snoring.  It means I know she’s breathing.

MW has a moisture lesion that’s eaten through the skin in the crook of her elbow.  You can see the ligaments through the hole.  I could write about this on social media but who wants to know?  Who wants to read about that, right?  I’m comfortable about putting it here, that’s what I started this blog for – a place to let it out.

I guess my life – our lives – isn’t what you’d describe as normal.  Because I don’t know anything else, I forget that, sometimes.

Where’s your head at?

I made tonight’s evening meal and brought it through to the bedroom, ready to feed MW (she spends 18+ hours a day in bed so, inevitably, some meals are taken in the bedroom).  As I walked into the room, I called MW’s name and told that her meal was ready.  No reply.  I called again, louder.  No reply.  MW was lying there, eyes closed, unresponsive.  No word of a lie, reader, I almost shit.  I thought the worst.

MW has MS.  A common symptom of MS is fatigue.  MW was merely asleep.

But that’s where my head’s at.  All the time.

One thing that MW is known for among her family, her friends, her carers, etc. is her hair. Despite being older than me, her hair is still naturally very dark. It’s one of the traits that leads people to believe that she’s younger than she is.

This morning, I’ve noticed she seems to have more grey hair than usual. I don’t know if the way the morning light was shining on her gave the impression of more grey or if it’s a real change. Either way, it seemed to make her appear more fragile. And she looks fragile enough without losing this last bit of her youthfulness.

A couple of thousand things whirling around in my head at the moment, including: Is it churlish to begrudge the carers their holidays when you’re not likely to get one? Even though you know they deserve them?

Answers on a postcard, please.

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.