"Writing from the Heart"

Deirdre Maher, whose husband Roch has been living with MND for over five years, tells us about the message behind her recently commended short story and the importance of her writing to her.

Our local Branch of the MND Association, the West London and Middlesex Branch, have been good enough to publish an article about me and my writing in their latest newsletter. Many thanks for the press coverage folks!  

To read the newsletter, including my article, just click on the link below. 

Cheers!

http://www.mndassociation.org/Resources/MNDA/West%20London%20and%20Middlesex%20Branch/february.pdf

Losing Jenny

We are entering a time of transition. Many of you know Jenny, Roch’s Personal Assistant and Caregiver. Well, Jenny will be leaving us at the end of this month. She is moving back home to Australia. I think we’ve all been in denial a bit around here. We’ve been very down to earth and practical about it, lining up possible candidates for interview, drafting interview questions and discussing hours and logistics and arranging suitable dates for the successful candidates (we think we need to engage the services of more than one person) to shadow Jenny before she leaves.  For some time now I have been feeling stressed about it, waking at night and feeling anxious about the future. My workplace has been very understanding and I will be on unpaid leave for the month of March, to help and support the new people at home, as well as spending more time with Roch.

So we ARE dealing with the practicalities. We don’t know who will replace Jenny yet – we have to make our decision within the next few days. We’ve met with and interviewed four people now, and they all seem very nice.

But when I say ‘replace Jenny’ – well, nobody can do that. My Mother often says to me “There’s nothing good about MND.”  She’s right of course, but good things have happened to us since Roch’s diagnosis and one of those good things is Jenny. Jenny doesn’t just look after Roch. When she walks in the door, she brings a special energy all her own – a vitality and positivity which energises all of us. I walk past the door of the wet room at shower time and hear her singing – sometimes I hear them both belting out a tune – followed by a burst of laughter, as they enjoy a joke together. It always makes me smile and my heart actually lightens a little. He’s happy. She makes him happy. She takes no nonsense from him, mind you, but he likes that, too.

But Jenny doesn’t only look after Roch, I suspect she looks after all of us, me included. In fact, especially me. She knows when I come in tired from work and there’s always a twix and a cup of tea ready. She knows when the recycling needs to be done and when Oscar The Cat’s paws need to be wiped before he can be permitted the run of the house. She knows how I like things in the kitchen. Jenny makes my life as an MND wife easier in lots of ways.

We will miss Jenny not just because of all she does for us but because of all she is to us. I try to have faith in the future. Who knows what joys and blessings the next Person will bring into our lives? 

But they will never replace Jenny.

 

 

If you want something done, TWEET!

Seriously, I want to pass on a very useful piece of advice: 

“If you want something done, tweet about it!”

Back in November, some nuts and bolts on Roch’s recliner chair worked themselves loose and rolled onto the floor.  The mechanism of the chair was unaffected but the loss of the bolt made the whole structure pretty unstable, so we called Medequip. Sometime around 12^th – 17^th November, they sent somebody to carry out repairs. The repair man put the nuts and bolts back in place but explained that he didn’t have the proper tools or fixative to do a permanent job. He promised to ‘put the paperwork through’ and send someone else to carry out a permanent repair job. 

Weeks passed and eventually, the nuts and bolts worked themselves loose again and rolled across the floor, hotly pursued by our cat. I spoke again to someone from Medequip and also emailed our OT, and Medequip sent a second guy out to do the repairs I think around 17^th December. When I asked him if he had the fixative and the correct tools for the job he was puzzled and told me nobody had mentioned this to him. So once again, a temporary job was done and he explained that his colleague had most likely not put the correct paperwork through. He told me that the nuts and bolts would eventually work themselves loose again…well, we knew that. He said we needed a specialist engineer.

Well, we got through Christmas before the nuts and bolts worked themselves loose again and this time I emailed our OT to say that if the next person from Medequip arrived without the means to carry out a permanent repair I wasn’t even going to let him in! I should mention that calls had been made to Medequip on at least two occasions where vague, puzzled voices informed us that there was nothing on the system about further repairs.

Anyway, at this point, in mid-January, our OT forwarded me an email she had sent to Medequip explaining how cross I was and their response assured her that if they hadn’t been out already, they would be out the next day. Well, they hadn’t been out already and we stayed in all day next day, but nobody arrived. 

That email exchange took place on 14^th January. By 27^th we had heard nothing, so I took to Twitter. 

@MedequipUK still waiting for your guys to fix riser/recliner for my husband who has #MND. 2 months on after 2 visits. Not good enough. H&S

I had an apology and response on the same day from @MedequipUK and within two days a pleasant and capable young engineer arrived and fixed the recliner properly. Now when we lower Roch into the chair using the hoist, it no longer rocks precariously and is perfectly stable.

So the moral of the story is, if you want something done, TWEET! 

In which I confess to feelings of guilt and resentment…

Blog post written 6^th February 2015 

It’s hard to believe that a year has passed since the PEG was fitted.  I read over my February 2014 posts the other day and reflected on those dismal days: 

“One Man and His PEG”, “Twist and Shout”, “Leaky PEG”.  

Well, one year later and Roch is still eating, although now we feed his meals to him. He can still eat a lunch and a dinner although in smaller portions and the food has to be cut into bite-size pieces. More and more I find myself becoming preoccupied with his nutritional intake.  I’m very conscious that he won’t always be able to eat so I want to make sure he gets the food he likes, the meals he enjoys.  He can’t stand up anymore so we haven’t weighed him lately. It’s hard to tell if he’s lost weight, just looking at him. The last time the nutritionist came to visit she told me that she thought he should be having 30ml calogen (concentrated protein) bolus fed 3 times a day. I felt guilty as he only ever has one calogen feed a day. It makes him feel full and he wants to eat real food for as long as he can.

He starts off the day with a fortisip for breakfast.  We usually get some lunch into him – sausages, tomatoes, white pudding and egg or spicy noodles with a fried egg on top – these are the current favourites.  Recently he’s even had a buttered crumpet for a snack in the afternoon. Then, later, it’s the calogen feed – but not too late in the afternoon or it takes away his appetite for dinner. He usually has a good dinner, although the portion is smaller. So it’s about gauging how much he’s had – has he eaten enough, should we be giving him another fortisip? More calogen?  He says swallowing isn’t a problem but to my eyes it looks like he has to put more effort into it.

Sometimes it seems that my whole day revolves around feeding him and I feel bad because I can feel myself resenting it. I think of my parents, and how my mother spent so much time in the kitchen, preparing meals. How, when we were on holiday, so much of her time seemed to me to be wasted on food preparation. Why couldn’t we just have had a picnic? Thrown some snacks in a bag and headed off into the sunshine? Instead, we sat together in hot stuffy kitchens in various beauty spots around Ireland, eating chops and gravy with mashed potatoes in the middle of the day, or dragging our heels with my father in the local butcher’s shop, while he chose the best cut. It was the way they wanted to do things, I guess, two hearty meals a day. She probably wasn’t unhappy in the kitchen – I hope – and my father did his share too, but I hated the thought of being stuck in the kitchen when there were so many other things to do. Even as a child I viewed it as a waste of their time. I vowed that when I was grown up, I would do things differently. 

So on the days when I am tied to the kitchen cooking sausages at lunchtime, through my frustration the irony is not lost on me. And of course, it’s the usual Carer’s package of conflict and guilt. Because I know that when the day comes when Roch can no longer eat a sausage, I will look back on these days, and weep for their loss.