We thought it was time we wrote an update on life in the Mayston household, but then we thought there’s probably not a lot to tell this time as, like the rest of the country we are staying home, and life is pretty much cancelled.  So then I came up with the idea of it all being about me, Lesley, MND through my eyes so here goes.

Firstly I’m not an angel, I have never wanted to be a nurse or a carer I’d much rather be dealing with paperwork which is probably why the whole of my working life I have been sat behind a desk doing just that, a pen pusher for want of a better word.  These skills have come in handy though as admin is as much a part of being a full time carer as anything else.

It’s almost 2 years since Martins first symptoms appeared, when I think back the first thing I noticed was, what we called “his floppy foot”.  I’d take the mickey out of it whenever we walked, and we walked lots, it flopped on the floor louder than the other one.  I’d laugh and tell him he must need new shoes.  Fast forward 6 months sitting in the local hospice attending the MND clinic I recall a lady walking down the corridor, I heard the noise, the flopping foot banging on the floor when she walked.  This time I didn’t laugh I just watched and felt incredibly sad for her and her husband.

So what is it really like living with someone with a terminal illness, an illness that slowly takes over your whole body and renders you paralysed so that eventually you are unable to move anything but your eyelids.  Well if I thought too much about that last sentence then I would go crackers, so that’s one secret don’t think too much. 

The paralysis of your body is a gradual process, no two people are the same so you never really know what to expect.  Martin’s breathing was affected early hence the prognosis from his neurologist of a life expectancy of 6 months.  Normally your respiratory muscles are the last to be affected, with that in mind we didn’t think Martin would ever be in a wheelchair, basically his respiratory system would shut down before his leg muscles.  However this doesn’t seem to be the case, his breathing has stabilised, while the rest of his body declines.  My main objective at the moment is to prevent falls, if he falls then there’s a chance he will break something, keeping him mobile for as long as possible is my goal.  He can no longer walk unaided so every trip to the toilet is with my assistance, I’m trying to be totally honest in this blog but pausing to think about how I write it honestly while preserving Martin’s dignity and pride.  I’ll read it to him before I publish it.

My Martin 6ft 2”, now is bent over, he struggles to hold himself up straight, he wobbles, he can’t breathe with the exertion of the few steps to the toilet, I’m 5ft 4 he feels the same height as me as I manoeuvre him through the doors, he leans on me as I walk him back to his chair.  I have to hang on to him as he sits down as his arms can’t hold his weight so he ends up crashing down on his already sore from sitting down so long backside.
He’s fallen twice in the house, thankfully no injuries.  But think about it, how does he stand up from a fall?  It’s almost impossible to get him up on my own, I can’t lift 11 and a half stone.  I’ve made him crawl to the stairs or a chair and then gradually hoisted him up, it’s not easy, some carers have to call 999 for help which seems a mad waste of resources but they can get that desperate.  

Writing this down and reading it back is upsetting so that’s definitely my secret don’t think too much!

5 times a day the Peg Feed, a tube that goes directly into his stomach that enables him to have all the nutrition he needs to stay alive, this roughly breaks down into 3 hourly intervals, Martin always asks if I get bored doing it and hand on heart I don’t. The one thing that terrified me in the early days was his choking, that was just the worst thing, I honestly thought he was going to die in front of me every meal time.  It must be truly awful for him not being able to eat, I just can’t imagine, but for me it’s a relief and peg feeding will prolong his life.

I grieve every day for the life we have lost, Martin was so full of life, never sat still for more than 10 minutes.  He was so impulsive, I’ll tell you a story about that impulsiveness.  A few years ago when I was working at Sandy Police Station he text me and said “I’ll pick you up from work at 4pm, we’re going to the coast, to stay overnight, I’ve booked a hotel, it’s going to be a very high tide and we’re going to watch it”!  I sighed and said ok bring me a toothbrush and clean knickers.  All the way there they were advising people to stay away from the coasts, houses were being evacuated and there we were heading towards it, typical of us, I was just glad we weren’t on the motorbike lol.  Anyway we arrived in Cromer the tide was amazing we watched it battering the seafront and pier, stayed the night in a hotel and left at 5am the next morning and he dropped me back at work by 7:30am. 

The smell of BBQ’s makes Martin sad, we used to have them all year round, I close the doors and windows as soon as I smell one.  I fell asleep on the sofa the other day and immediately started dreaming that Martin was going out to do a driving lesson, he got up, he opened the front door and went to the car all on his own and I watched him from the window drive off.  I have to think hard to remember those days, when he could leave the house without me.

The qualities needed in a carer, I think, patience in abundance, and an easy going attitude to life, I think I definitely tick those boxes.  Martin will say I’ve never shouted at him until now and I would like to say I don’t shout now, just sometimes when I’ve had to get up for the 20th time in 10 minutes that patience can run a little thin and a “really Martin??” can slip out.

I’m incredibly lucky to be able to work from home, so 4 days a week I can be found in our home office tapping away on a laptop, I’m not sure how we would cope financially if I couldn’t do this, Martin can’t be left alone now for more than an hour, carers allowance (if I qualified) is £60 a week, that wouldn’t go far.

It is becoming obvious that very soon Martin will need an electric wheelchair, there is a waiting list for one of these so I have, I think persuaded him to let me contact the Occupational Therapist with a view to sourcing one. The lovely OT, I hope she doesn’t get to read this, well she can be a bit of a “can’t do that person”, you know like a builder that stands there assessing a job and takes a sharp intake of breath at every opportunity?   Martin told her once that I’d called her Mrs Frosty Knickers, of course I completely denied ever doing this…sometimes Martin, things are better left unsaid! Lol.

I sometimes think and this is quite hard to say, that Martin is now a shell of the person he once was, he was wickedly funny, he would say exactly what he thought to anyone, which would sometimes have me cringing in my shoes.  I look at him now and he’s far away lost in his own thoughts, we watch the TV together but I’m not sure he’s really watching it or taking it in if I comment on anything it’s pretty apparent he wasn’t listening. 

Martin is also very aware that his speech is quite bad now, not only does he struggle to form the words, he gets out of breath easily.  If you call him and don't understand what he is saying please don't pretend you do, keep asking him to repeat it, I do and we normally end up laughing if I still haven't got it after about 10 times of him repeating it.  He would honestly rather you said "what was that?" than pretending you understand him.

We talk about death quite often, not instigated by me I can assure you.  I know what he wants for his funeral, he once said to me “how do you think I’ll die?”  My reply “I don’t know but I hope you just go to sleep one night and don’t wake up in the morning” But I added “I don’t want that to be tonight, or tomorrow night, or the night after..”..

 Take care all in these weird times we are living..