In New York

In New York
Rochsmefeller

Sunday, 15 February 2015

"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.

 


 

Saturday, 14 February 2015

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 12th – 17th 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 17th 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 14th January. By 27th 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! 


Friday, 13 February 2015

In which I confess to feelings of guilt and resentment…

Blog post written 6th 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.
     

Wednesday, 21 January 2015

Dying Without a Voice





Dying Without a Voice

On the 27th January, the All-Party Parliamentary Group (APPG) on motor neurone disease (MND) will launch a new report into access to communication equipment for people living with MND. What the MND Association say:

“We expect the report to show the shocking truth: people with MND are dying without a voice.”

What they are asking us to do:

“Please join our online flash mob and help us make a lot of noise about this issue. This online flash mob will help us raise awareness of MND by harnessing the power of Twitter and Facebook, sharing the same message with lots of people, all at once.The more people who sign up, the louder our MND voice will be!”

I signed up today. This campaign has got me thinking. It’s not just about communication at home and in social situations. So many MND patients in hospital are being failed by the NHS, because when they are admitted, they don’t have access to the technology which will allow their thoughts, wishes and feelings to be communicated to staff. Think of when you are in hospital, perhaps unable to leave the bed unaided, all you have to do is press the bell for a nurse to come and you can tell him/her what the problem is, what help you need, how distressed you are feeling, that you need more pain relief or that you need to go to the toilet. The MND patient without a voice must rely on his/her carers for this and even then, they may get it wrong, or they may not be there. 

Please sign up and add your voice.

Roch's Voice

It’s got me thinking, too, about Roch’s voice. He can still speak after five years with MND. He may die and still have his voice at the end, but there are no guarantees. We both fear a day when he can no longer speak.  I have lost count of the number of family carers who have told me that the worst loss for them was when their relative lost the power of speech. One woman, whose partner is living with MND told me,

“We have to argue via email!” Another, five years after the loss of her husband to MND, had tears in her eyes when she said,

 “It was dreadful when I knew I would never hear his voice again.”

When I was pregnant, Roch got into the habit of reading aloud to me at bedtime. In the early hours of labour with both Kate and Tom, he read to me to distract me. We continued this reading habit for years and nothing delighted the children more than when Daddy read to them.  Sometimes his chosen reading material would be the book he was currently reading himself, which more often than not would send them off to sleep in minutes! However, he did read ‘The Lord of The Rings’ to Kate when she was nine, thus happily fostering a life-long passion for Tolkien. Tom, I remember was the lucky auditor of ‘Ender’s Game’ by Orson Scott Card (which recently made it onto the big screen). Beatrix Potter had had her day by then.

Recently, Roch has begun to read to me again a little at night, but only if his voice isn’t too tired. He doesn’t like anyone to read to him, although I have offered. I think it’s a bit of struggle for him to speak with the ventilator mask on but I’m usually asleep fairly soon (especially if it’s American Civil War memoirs). We’re just trying to make the most of his voice, while he can use it.
If he does lose his voice, we hope that he will have access to the new Eyegaze technology so that he will still be able to communicate. I know he fears an admission to hospital sometime in the future, bereft of communication devices, unable to speak. 

Timing is crucial in MND. There can be a six week delay in receiving communication equipment. That could mean dying without a voice. So this campaign means a lot to us.

Please sign up and add your voice, too. 




Tuesday, 30 December 2014

"The Times They are a-Changin'..."

"The line it is drawn
The curse it is cast
The slow one now
Will later be fast
As the present now
Will later be past
Your old road is
Rapidly fadin'.
And the first one now
Will later be last
For the times they are a changin'."

Bob Dylan

"The times they are a-changin". That's what the song says and it's a line I  find repeating in my head.

No more attempts to walk in the hoist. The plate, which for so long lay in wait underneath the bed has been dusted off and attached at last and now he is wheeled around in state. The walking is over. It's dispiriting for him. It's a big change. I'm finding the adjustment difficult myself. Like feeding him. That's a big adjustment too.

Telephone conversations for him are increasingly stressful. I find it frustrating on his behalf. People don't understand how it is for him.  So I have decided to set out some handy guidelines. Before I start, please don't be offended. You weren't to know, but having read this, you will:

1. He needs to pause for breath. Don't rush to fill the silence. He may not have finished expressing his thought.

2. Please, please don't interrupt him or talk over him. He will just give up. You will never hear what he wanted to say and he will never get to say it.

3. It's tiring for him. If its not too much trouble for you, plan a little. Don't fill the conversation with meaningless small talk. He doesn't have the time or the energy. What do you want to say to him? Say it. If it happens to be meaningless small talk - fine - but don't start with it if you really called to say something important. You won't get to that. 

4. Group calls can work, but only if one person speaks at a time and please don't all talk together or shout to him from the background. It's confusing and tiring for him and it makes him feel worse. It's different now. It's all different now. You've got to adjust to the changes too. 

Christmas

Christmas morning pancakes with Tom.

We did our best with Christmas, a valiant attempt to produce something more than the ghost of Christmas past. Oh we put a brave face on it and there were some fun moments.  But this year I fought constantly against a rising tide of sadness. The ghost of Christmas future rises to haunt me, all the more sinister for his nebulous form.

Roch sits in his riser/recliner in the midst of our lovely Christmas decorations, twinkling lights and sparkly baubles, the centre of our family celebrations.Christmas dinner (his favourite meal) was fed to him for the first time this year. The children are marvellous and feed their father with grace  and good humour. How can it not affect them? There have been some tears shed this Christmas as the shadows lengthen but always my magnificent, brave, beautiful children shoulder their burden again and like the good little pilgrims they are, continue their journey alongside us. 

We did wrap his presents although he cannot unwrap them without extreme difficulty. But he wanted to try to unwrap them himself. He tore feebly at each gift and with some assistance managed to open each one. It tired him out.

Kate and I made it to Christmas Day Mass and I was pleased. I haven't been to Mass in a while.  For the second year, Tom chose to stay with his Dad and we returned to find Roch showered, dressed and ready for the day.I couldn't help thinking of years gone by when we would both be busy in the kitchen preparing the food and toasting each other with the traditional sweet sherry, served in the Waterford crystal sherry glasses which were Wedding presents. The sherry was absent this year as I was hit with a migraine on Christmas Eve and my head was more than delicate on Christmas Day. But there were toasts aplenty.

Christmas Rose 'A Christmas Carol'.

The sun shone on my Christmas rose which bloomed beautifully for me, we were all four of us together and able to share our Christmas feast and the pile of presents on our Christmas table could not but gladden the heart! As Jo March famously remarked "Christmas won't be Christmas without any presents!"

Christmas wouldn't be Christmas without any presents...
Buck's Fizz!
Family S-Elfie!

St. Stephen's Day (Boxing Day to our UK cousins) brought its own excitement. Brentford played Ipswich Town at home and thus presented us with an unmissable opportunity to meet the great Mick McCarthy,  Tom's hero since the 2002 World Cup, when as The Republic of Ireland manager, he brought the lads to the last 16.I wrote to the club in October and they made contact with me last month. Yes, Mick would be delighted to meet Tom and Roch if at all possible, on the day of the match. The secret was kept until match day dawned.Well, Ipswich made short work of Brentford but I didn't begrudge them their win. The teams were on the pitch, the match about to begin, when the familiar tall  figure emerged from the tunnel. He walked along the side of the pitch by the disabled supporters' section, searching the crowd...I stood up and waved and over he came. A perfect gentleman, he greeted us with handshakes all round and I swear it made Tom's Christmas.Now there's a memory to cherish and I guess every MND family carer out there will relate to that, because we are the memory makers -  wives, partners, mothers, sons and daughters. Making what's left of it a life worth living and storing up a treasure trove of memories to glow for us in the dark days ahead. Thanks to Mick McCarthy and to Val at Ipswich Town FC, who did her best to make sure it happened.


Tuesday, 16 December 2014

November

Here I publish a post written last month. I thought about changing it, you know, updating it but then I thought - this is how it was last month and how I felt. I wasn't sure about publishing the post then, mainly because Tom was still at Uni and I hadn't had a chance to talk to him about the hospital visits. So it sat on the back burner until now. Roch and I travelled down to Southampton last Friday to bring Tom home for Christmas, One small update I will share with you - the antidepressants seem to have kicked in and Roch's mood is better. Anyway - here's November's post.


Happy Birthday to Roch!


A Busy Month

November is always a good month in our house, with my birthday at the beginning of the month and Roch’s at the end. It’s a month that begins with celebrations and presents and ends in the same way, but with the added anticipation of knowing Christmas is just around the corner. The year is dying and yet for me, there’s something lovely about watching the falling leaves swirl around our garden, even when the shrubs and birch are dripping and sodden. I love to go outside in the morning and fill the bird feeder, then when Roch is up and having his espresso and naughty cigar, we can watch the avian activity from the warmth and brightness of the kitchen. After the ritual of the first bolus flush, fortisip and tablets and before the Qufora and increasingly exhausting business of showering and dressing, this is a time when we can feel like a normal couple, enjoying our morning coffee together.This November has been especially busy. Apart from the birthdays, we have had two key appointments with our two favourite consultants.

Royal Brompton Visit 18/11/14


“I saw you on the telly!” Said one nurse, as she accompanied Roch for his lung capacity test. Quite the celebrity then. Professor Polkey explained that he had missed the programme himself, but had heard about Roch’s television appearance and described Roch as ‘an inspiration’. Always nice to hear.Blood gases were good but lung capacity is down since last time. A not unexpected result, but what Roch was keen to discuss with the Professor was his constant fatigue and frequent episodes of breathlessness, which occur when not on the ventilator. Did the ventilator settings need to be changed? Professor Polkey was clear about this. No, he explained. The settings are okay – but the symptoms of the disease are worse and now it’s about managing those symptoms. The lungs are fine but the muscles are letting Roch down. It’s getting more and more difficult for him to breathe unaided. He suggested a sleep study but Roch said no, not at the moment – he just felt he couldn’t face it. I watched as Professor Polkey placed a hand gently over Roch’s hand, where it rested on the arm of his wheelchair and said,“If I may say – when time is limited – you must do the things that you wish to do."He suggested a sleep study in March but I don’t think it will tell us anything we don’t already know.We were lucky that Roch had an appointment the following week with Professor Al Chalabi at King’s College Hospital. There were two issues Roch was keen to discuss with him. One was the issue of fatigue, the other – predicting his prognosis – or in other words, life expectancy.


King’s College Hospital 27/11/14


Roch explained that he is much more tired than he used to be and that he also has reduced concentration at times. Professor Al Chalabi was unsurprised by his level of fatigue.“Sometimes I just sit in my chair doing nothing and I’m still exhausted,” Roch told him.The effort of simply holding his trunk upright in the chair, of lifting a hand for a handshake – of every voluntary movement in fact – is tremendous for Roch now, explained Professor Al Chalabi. Roch may feel like he’s not doing anything to induce fatigue, but the remaining active muscles are working overtime to compensate for the loss of their fellows and to allow even the reduced movement he has left. It’s very tiring.He also said that another cause of fatigue and reduced concentration is low mood and he asked Roch about this. He suggested that depression might be an issue and Roch agreed.


Prognosis


Having established that this was a conversation Roch wanted to have and that we both understood the limitations of the methods of calculation; that they would not give anything other than an idea of projected timescales and possible life expectancy, Professor Al-Chalabi then turned to the task with a kind of boyish enthusiasm which I found most engaging.He used three different methods to calculate, based on factors such as onset of symptoms,  ventilator use, peg insertion and first appointment at King’s College.The results of two of these methods revealed the news that Roch should, in fact, already be dead! The third has him dead by August 2015. Professor Al Chalabi told us that he feels this is most unlikely. Roch has been outside the normal parameters all along. He also said that he has known patients at Roch’s stage (and at other and later stages of the illness) to ‘plateau’, meaning that they remain in their current state for some years, without symptoms worsening. I think this is unusual but then, so is the way MND has presented for Roch. On the flip side of this, clearly as Professor Polkey remarked, time is limited and of course it’s not impossible that Professor Al Chalabi’s third prediction will come to pass. After all, that will make it seven years. Roch and I are agreed that if he beats these odds and he wakes up on 1st September 2015, we will have a special celebration. 31st August 2015 will be our 25th Wedding Anniversary so let’s hope he makes it. I’m holding out for the silver.

In the meantime, following Professor Al Chalabi’s recommendation for anti-depressant medication and visits with the Hospice Nurse and the Community Matron, the GP has duly prescribed and we hope that this will help to lift the mood and lessen the fatigue. Unfortunately an initial side effect is...fatigue, so once this passes…let’s hope for a Merry Christmas (sounds of faint cheers in the background).


We did have a cheery time at the West London & Middlesex MND Association Christmas party on 30th November.  As always, it was wonderful to arrive to the warm greetings of our friends there. Such a lovely atmosphere of care and support surrounded us. I wouldn’t have said that five Christmases ago. That day, our very first meeting, I just wanted to run away. Greeted by other MND wives, some of whom had lost their partners, others struggling and clearly in need of support, I felt overwhelmed. I remember thinking “I don’t want to be here!” Afterwards, as Roch drove us home (still driving then, walking with a stick) I burst into tears, clutching the small box of chocolates bestowed upon me by Santa at the party.
Since that dark and wintry Sunday night, we have made friends there, amongst them people living with MND and their Carers and we have come to appreciate the small group of dedicated volunteers who run the branch.  Their emotional and practical support has helped us both enormously.Each year there are absences, some people have died, some too unwell now to attend. There are new faces too, new people with MND and their Carers. I think of how I felt the first time I went along, and wonder if they feel the same. That night I didn’t want to go back but I’m very glad I did.This year I went home clutching my Santa present (small box of chocolates!) and feeling rather more relaxed after a complimentary shoulder and neck massage. I drove us home as I always do now, securely fastening the wheelchair in place, manoeuvring the WAV through the traffic with a confidence I couldn’t have dreamed of five years ago.  

Proving that even the naughty ones get presents!