In New York

In New York

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 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


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.


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!