THE MADNESS OF GRIEF

When people ask me how I am, and want to know, I find it harder and harder to answer.  “I am standing up and facing forward” which is true and socially palatable, but it is not always true to say that motion follows.  Sometimes I am stuck, and not a day goes by when I think of nothing but something I said, or did, which I wish were different.  This induces a sort of paralysis.
Written by The Reverend Richard Coles, but resonates with me completely.

 
I thought I would update Martins page with a final blog, I don’t think it was ever a secret that I wrote his personal blog posts, Martin never would have had the patience to do it, he used to tell me what to write though and he always approved it before it was published.  That was Martin all over, full of good ideas, when he was well he used to call me and say “I want to do, blah blah blah, make it happen Lesley” I was his personal assistant, a job role he regularly said he would sack me from if I ever voiced a slight sigh of ‘I can’t be bothered, or I’m a bit busy at the moment’ in his ear shot.  I always used to reply ‘You would struggle to recruit as the pay is crap’.  And so I kept the job…

I dislike the word ‘journey’ when describing a life event but it is the best word to describe the way that MND engulfed our lives.  The deep depression of the early days pre-diagnosis, coaxing Martin up and out of bed every morning, trying to keep his spirits up, trying to carry out our normal daily routines, going to work, babysitting, telling him he might not have this dreadful illness, all while a voice telling me deep inside that yes he really did have it. Then comes the diagnosis, the actual reality, for me that’s when the grieving process started.  I recall being told not to waste time chasing a cure, there isn’t one.  Martin had a slight limp and a weak hand how on earth does this escalate into anything else, how long does it take, so many questions, so many statistics, so much thrown at you when all you can think about is the life that you once had and enjoyed is going to change beyond all recognition.  Martin continually watching you tube videos of MND patients on the TV, so there was no escape, both of us crying every day, what was to come was so very scary.  

The first visit to the MND clinic held at the Local Hospice, when we were sat in the waiting room surrounded by MND patients in wheelchairs, locked into their bodies with only the ability to move their eyeballs. it was truly awful and I remember sitting opposite him and shaking my head and mouthing ‘we shouldn’t be here’.  I sometimes think you can know too much, it was all too soon, ignorance is bliss and all that.

Anyway to bring you up to date, in February we were at last allowed 10 hours care package a week, this involved 2 carers for 45 mins in the morning and 30 mins at night 7 days a week.  It was so difficult to adjust to having the intrusion of strangers coming into your home every day.  They did very little, my fault as I am a complete control freak and didn’t think they could do it as well as me.  We did relax into it, we got to know the small team, and gradually got used to the daily visits.  Around this time Martin lost the ability to stand up, another stage we didn’t want.  Not being able to stand didn’t help with his secretions on his chest, and the practical stuff of getting trousers up and down when you can’t stand up is not easy!

 It was night carers I desperately wanted though, Martin wasn’t sleeping well at all and all I really wanted was someone to sit with him overnight, to adjust his mask, move his legs, adjust the duvet which for the last 6 weeks or so he wanted doing hourly, sometimes 6 times an hour, it was relentless and I will quite readily admit I was running on empty.  By now I was sleeping on the sofa next to him as even being in bed in the next room was proving pointless and more tiring getting in and out of it many, many times during the night.  He was also scared of being alone, sometimes to just lie and hold his hand made him relax more,  On days I had to leave the house, I would always leave him in the safe care of one of his sisters and it was never more than a couple of hours, but his eyes would plead with me to not be long, like somehow I could make him better, stop him from dying even..

Also around this time Martin was having days where he would struggle to breathe, I can’t imagine how terrifying this must have been for him.  One particular night I rang 999 as he was really struggling, by the time the paramedics arrived he had calmed a bit and his oxygen levels were slowly increasing, they wanted to take him to hospital to be checked out but that was something he didn’t want.  There were 4 paramedics in our living room and we were all avoiding telling him that he was taking a chance by choosing to stay home until one of them said ‘I’ll put this bluntly Martin you could be choosing death by staying home’.  He shrugged his shoulders, he at no point wanted to die but he knew he was dying and certainly didn’t want it to be in a hospital bed alone, when realistically he knew they couldn’t make him better.

Martin always made an impression with the medical team, they’re unlikely to ever forget him, in fact a few of them have contacted me since he passed away stating that fact!  He would always laugh and joke with them, when they visited our home, he would happily tell them when he’d had enough and they could leave.

It’s strange writing this knowing that I can’t run it past Martin first, he was always more open than me and didn’t really care what he told people.  I will choose to not document some stuff as it feels quite personal and I am in some way betraying his dignity.   
 Martin lost his fight with MND in the early hours of Friday 19th March, 27 months, or 819 days after his official diagnosis.  he got his final wish to die at home with just me present, it was sudden but expected, as stated by the paramedics that attended. 
I didn’t and still don’t feel relief that he is no longer suffering from this dreadful illness.  I was not prepared.  The only thing that does bring a small amount of comfort is that Martin wasn’t locked into his body, he still had some core strength meaning he could sit upright, he could still hold his head straight with some support, he could nod and shake his head, he could move his arms and still had some dexterity left in his hands, enough to be able to use the TV remote.

Martin planned his own funeral completely, his song choices would be played most days, blaring out so loud the house would vibrate.   The only bit we couldn’t adhere to was the wake afterwards, something we are hoping to hold around his birthday in the summer, this will also enable all the extended family and friends who couldn’t attend the funeral due to restrictions to get together and remember him.  

So life goes on and gradually Martin is deleted from the system, the one number you’re given to call after a death informs all the authorities and gradually that person is eliminated and forgotten by all but those that truly loved him.   The letter from the DWP received 6 weeks after his death, a letter of condolence, how nice of them, but also a letter saying that as Martin had died mid- week on their system I would need to re-pay half of his benefit from that week.  It made me smile as I knew exactly what Martin would say to that with a few swear words thrown in for good measure.

And I guess that’s how to cope with this grief lark, every time something happens or someone annoys me, I think what he would say, that always makes me smile.  

We will continue as a family to raise funds in Martin’s name, every day I read of new cases, families reaching out for support and advice as they are propelled into the true horror that a diagnosis of MND brings, I’m confident a cure will be found one day.