"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.

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 1^st September 2015, we will have a special celebration. 31^st August 2015 will be our 25^th 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 30^th 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!

Wheelchair Candy

I said October was a good month for me. This is not just because of Boston, but also because I enjoyed some literary success! Carers UK ran a creative writing competition and announced the results in October. My story was highly commended. The theme of the competition was Caring with special emphasis on Friends and Family. That theme caught at my heart and it seemed to me that the story I wrote appeared on the page before me, almost fully formed. I wanted somehow to get across to my reader how being a carer to someone who is also a partner impacts on your relationship and how sometimes it’s easy to forget who you are and why you are together.

Here is a link to the competition results and I would urge you to read all the winning stories and poems as well as the highly commended entries. Many thanks to Carers UK for the opportunity to tell my story and for publishing ‘Wheelchair Candy’ on their website as a ‘highly commended’ entry.

http://www.carersuk.org/how-you-can-help/writing-competition

In which I travel alone to Boston, MA

Good Wives at 'Orchard House'

October was a good month for me. I travelled alone to Boston, MA to spend a week with my dear friend Carmel and her husband, Breandan. This was a carer’s break and a half, let me tell you. The best time of year to visit Massachusetts is the Fall and the beauty of the leaves did not disappoint. At the airport, I reflected on the trip to come: Sunday October 12 2014“So, the day is here and I am waiting for my Gate number to come up. I am on my way to Boston. I have to write that down to believe it’s true. I am alone and this is very different for me. I am feeling sad because I have left Roch behind and I wonder – will I regret spending this week away from him? The people who matter say it’s a good thing that I’m taking this break and for a long time I’ve thought about doing it. Going to see Carmel, exploring Boston. This is the best time of year to visit, they tell me. Not too cold and the leaves are beginning to turn. I am looking forward to lots of new, positive experiences but it’s also a glimpse of a future for me. A glimpse of what it might be like without Roch. I am thinking a lot of the old days and the young Roch. I feel so sorry for him and admire his bravery so much. His stoicism, his patience, how calm he is in the face of what awaits him.”

We talked about going together but he was adamant that I should go alone, that it wouldn’t be a break for me if he came along too. He was right and I will always be grateful that his big, generous heart urged me to go and I am proud of myself, too, because I did go and spent the most wonderful week there. Remember, my blog followers, in a very early blog post, I recorded the reactions of many on hearing the news of Roch’s diagnosis? Do you remember the person who simply told me “You’ve a hill to climb”? That was Carmel.

Carmel and Breandan – best of good company, best of friends – thank you.

Carmel – we’ll always have Concord and Orchard House – and the Isabella Stewart Gardner Museum! BFF
 

Of Football and Family.

With Alan McCormack. Many thanks to Christy (far left) for arranging this.

Time for a Catch-up Part II: The Family Visits

I’m rather proud of the fact that of all the home matches at Brentford FC this season, I have only missed one (I was working that day). Roch hasn’t missed any. The proud owner of a Carer’s Season ticket, I am following their progress in the Championship with interest. The more games I attend, the more I care. I haven’t quite reached the nail biting agony involved in watching Arsenal but I’m beginning to care about Brentford.* This is a good thing when they win. It was certainly a good thing on 27^th September, when Brentford beat Leeds at home 2-1. That was a special one.

This was a greatly anticipated weekend as all of Roch’s brothers, one brother in law and a cousin travelled from Ireland to attend the match with us. Amongst them were three Leeds fans! I’d say sorry guys but really I’m not. WHO ARE YA?

The highlight of the day was meeting right back and goal scorer Alan McCormack after the match. Many thanks to Christy for arranging this. Alan presented Roch with a shirt signed by the Brentford Team and patiently posed for photographs.

These days, although I look forward to family visits, I do experience a certain amount of anxiety in advance. Roch doesn’t have the stamina he used to have and tires easily. I need to know that visitors will listen and understand his needs – and mine – and accept the necessary restrictions we impose. Gone are the days when a long weekend of activity, talking and socialising (especially in a group) can be managed. I hope it doesn’t feel like we are being exclusive and unwelcoming, but truly we are just trying to make sure he can enjoy himself. So we have to pace the arrangements. I think the weekend went really well and I hope everyone had a good time. A big thank you to all for keeping to the arrangements and giving us space to prepare in advance and time to rest up afterwards. It means a great deal when people listen.
Smaller groups are best now. No more big parties. It’s too difficult for him to make himself heard. More and more in conversation he misses his ‘turn’ if there are a number of participants. Gatherings  have to be managed differently. He seems so like his old self, and I’m guessing that’s a relief to people who perhaps haven’t seen him in a while – not just family, but friends too. So when people see that he’s not as altered as they perhaps had feared, they assume that he’s unchanged in other ways, too and expect the old stamina. But it’s not the same and whilst he remains essentially Roch, his physical capabilities are reduced. Of course some days are better than others.

It was a good day in October when we had a lovely visit from Marianne and Laura, Roch’s sisters. They came for the day and it was a wonderful opportunity for Roch to catch up with them and for them to spend quality time with their little brother. He is so happy that he has had time this Autumn with all his brothers and sisters.

Supported (quite literally) by three of the strong women in his life! 

* Brentford's recent winning goal against Derby County in the 94th minute produced a display of spontaneous exuberance on my part which almost went undocumented but was captured on TV camera to my great delight and amusement! 

Plums, Persuasion and ‘Puga does Everything…’

September brings a holiday and a family visit

Time for a Catch up - Part I - We Holiday in Dorset

I think the holiday in Dorset was a success. For a while there it was touch and go, and there were definitely some hairy moments in the beginning, but it turned out well. We were pretty much in the middle of the countryside and basically right next door to a farm so the quiet was broken only by the whinnying of horses and the gentle lowing of cattle. At night we could actually see the stars. Roch and I sat in the garden and watched swallows soar and once we saw a sparrow hawk glide. A neighbour brought us succulent Victoria plums just off the tree. It felt a long way from busy London. 

In the evenings we heated up one of the freshly prepared organic frozen meals supplied by Manna Kitchens and settled down to watch an episode of Orange is the New Black. Tom and Kate showed me the YouTube phenomenon known as ‘Puga Does Everything’, which records the adventures of a pug dog called Puga/Maya (who actually can’t really do much at all) in their continuing campaign to persuade me to adopt a pug into the household. These YouTube videos are accompanied by a catchy tune which is still ringing in my brain. ‘Puga does everything’ sings - er - Puga. Much hilarity generally ensued as we observed Puga attempting to stir a cake mixture or make a horror movie (my personal favourite).
I blame myself for #hairymoment1. Tom and I had crossed the courtyard to the building which housed the heated splash pool. Bliss. Just the two of us, horsing around, racing (he won every time), playing pool volleyball…Kate had stayed in the cottage with Roch. Tom and I called a halt to the frolics reluctantly when we remembered there was no mobile phone signal and headed back across the cobbled courtyard through the sunshine. We entered the cottage in the nick of time.

Now, I should have mentioned that the hoist provided was, indeed an ‘Oxford’ hoist but what I failed to realise was the importance of having an Oxford standing hoist. I thought we could use just about any hoist. Rookie error. Don’t judge me. When I saw it first, I saw that it was different but I thought we could make do. So Kate had tried to make do in my absence and had manfully done her best with our sling and their hoist but it took the three of us to literally grab him and manoeuvre him safely onto the toilet. The hoist was seconds away from toppling over with Roch still attached, in the sling. It only took one use of the hoist to show me what a potentially serious mistake I had made. It shook us all and I really regretted it. I felt I had put Kate in a terrible position, and I had certainly put Roch at risk. Happily, no harm was done and with the help of the proprietors of the cottages and the wonderful Jane at Pluss, a standing hoist was in the cottage by 9am next day, Sunday.

Kate and me on The Cobb

So Sunday started well. This was the day we chose to visit Lyme Regis.  I myself was keen to visit Lyme and walk on the Cobb. For all you Jane Austen fans out there – which of you could resist seeing the mediaeval steps from which Louisa Musgrove jumped and fell upon the Cobb? Looking in the guide books under ‘access’ it is clear that Lyme is a very hilly place but the fact that the seafront has level access gave me confidence. Unfortunately we couldn’t have picked a worse day to visit. 
There was a music festival and the only parking to be had was in a car park outside the town, at the top of a hill. We had been driving round the town for ages and were all hungry and stressed but we parked up and attempted to enter the town on foot. I say attempted as it soon became clear that it was going to be a dangerous business getting Roch’s wheelchair down to the seafront. In fact, we had to call a halt to the procedure. We then realised that the hill was too steep to allow for the wheelchair to return to the car safely. 
 #Hairymoment2. Well and truly stuck. Off I went, toiling up the hill in the heat, to retrieve the car. We decided to make one more attempt to find parking down by the seafront. I drove into a tiny car park, which was full. My heart sank. How on earth was this making Roch feel? I couldn’t believe that we might just have to drive away from a town because he couldn’t enter it in his wheelchair! How much easier would it have been if he could have walked along with us, through the town and down to the Cobb? Out of the corner of my eye I spotted the solitary ‘disabled’ parking space in a corner, occupied by a small passenger van. The back of the van was open and I could see a young man inside. With a fervent prayer I asked Tom to hop out and ask if he was parking or leaving. Yes! He was preparing to leave. What a lucky break. It wasn’t long before we were sitting at the edge of the beach, eating delicious fish ‘n chips. With a cold beer for Roch, in no time the day had been retrieved. I don’t think anyone who isn’t disabled themselves or who doesn’t have some experience of caring for a person in a motorised wheelchair, can possibly understand the difficulties and frustrations involved in simply trying to do what everyone else takes for granted.
By the way, in spite of all, Lyme was lovely – a real seaside feel to it. Strolling along the seafront in the evening sunshine with our Mr. Whippys – what a treat. By the way, when I saw how steep and treacherous those steps are, I had to shake my head. What a foolish, headstrong girl Louisa Musgrove was.

Roch enjoys some real ale at the wonderful Udder Farm Shop restaurant

Check out the following if you are thinking of taking a break in beautiful Dorset:

https://www.EllwoodCottages.co.uk  Accessible accommodation in beautiful, peaceful surroundings, run by the charming and helpful Ann and John Heath

https//mannakitchen.co.uk  Delicious pre-cooked, frozen organic meals and desserts

https://www.theudderfarmshop.co.uk/  Just - 'Yummy...'

https://pluss.org.uk/  Equipment hire in Devon and Dorset. Excellent, friendly and professional service.

The Wisdom of Uncertainty

There have been a number of small changes in Roch’s condition. Taken together, they bring him closer to the state of helplessness which he dreads. Every day on the internet I see the courage and hope of people living with MND. I see how Carers and families strive to be positive. 

I think “I used to be like that.” I don’t wish to discourage but I truly believe that the farther into the hell of this illness you get, whether Carer or Sufferer (and I use that word deliberately) the more difficult it is to be positive and upbeat about it. Roch lives with MND but as the disease progresses, let’s not sugar coat it, he suffers. As a Carer I also feel that there are times when it’s ok to sit with sadness and grief and to face the fact that the Monkey kills.  In my very first blog post, written on 24^th March 2010 I wrote:

“Ok so now I've started. I'm a blogger! I've decided to blog about my life, specifically since my husband was diagnosed with MND last June. For those of you who don't know, MND stands for Motor Neurone Disease. It's a progressive degenerative neurological condition (what a mouthful) and at present he is 'living with it' but we all know it'll get him in the end. He calls it 'The monkey on his back'.”

“We all know it’ll get him in the end.”

Of course, if you stayed in a mindset of sadness and grief, you wouldn’t be able to function, but it’s important to give yourself permission to feel sad and face the truth of it and not to feel guilty if you can’t feel positive and upbeat all the time. I’ve been at Carers meetings in the past where I’ve felt something of a fraud, with Roch relatively well and functioning. I’ve listened to family members who have broken down, speaking of their loved one’s suffering and how they are watching the rapid degeneration of that person’s body. They’ve spoken not just of their grief, but of their fear and feelings of helplessness. For them it was a case of trying to deal, not just with the practical problems presented by the rapid onset of symptoms, but with the overwhelming emotions which accompanied these changes. I recognise that we’ve been luckier than that. We have faced a slower progression and have been granted the time to plan ahead, organise strategies – prepare…

Now, as I say, there have been a number of changes. You know his breathing has been compromised for some time – the use of an inhaler and increased use of his ventilator helps this, but he gets very breathless at times, especially when eating. As he says himself, breathing and eating at the same time is a major undertaking. Thank goodness for the PEG. But he still wants to eat and why not, if we can manage it? Now the swallowing is becoming an issue. It’s what I’ve been dreading. The speech therapist, Cate, came to visit last week. It was a very positive meeting and Cate could not have been more pleasant or sympathetic. All her advice was very helpful. And yet I sat there fighting the strongest urge to get up and run away. The words ‘I don’t want to be here’ scrawled themselves across the inside of my brain and with an effort, I erased them, bringing myself back to the practicalities of the moment.  

I’ve been there before – anyone who thinks I take it all in my stride is mistaken. I have to carefully process each change. What exactly does this change mean? What can I expect? What is required of me? What must I do/obtain/learn to deal with it?  What will help me to cope with this? Eventually, I settle down to the ‘new normal’ and hope that nothing else changes too soon.

I’m aware that this post may sound negative but I make no apologies for this. Instead, I offer you my thoughts on answering the question I pose above, a question every Carer must ask themselves:

“What will help me to cope with this?”

I know I’ve mentioned living in the moment before but now I’m going to talk about it again because I believe this is the key to survival for me, as the Monkey gains in strength and momentum.

You know that I have tried to meditate. I’ve told you that I’m not very good at it and that my counsellor feels it would help. I know that she’s right and every so often I try again. So the other day I signed up for a free 21 day meditation package with Deepak Chopra. Sometimes things just seem to fit together. Call it Karma. This morning I listened to Deepak’s guidance for the Day’s meditation and it spoke to me as the Carer of a Person with MND. I remembered a previous blog post about living in the moment. Deepak spoke of ‘The Wisdom of Uncertainty’.

“Openness is Here and Now,” he tells us. “We are not facing the Unknown as something to fear. The present moment is eternal,” he says, “Because it endlessly renews itself. What is the next thing that will bring you joy? You don’t know. It’s unpredictable. The next thing you see may be a source of innocent joy. This is the Wisdom of Uncertainty.”

The Wisdom of Uncertainty. We know that the path of every person living with MND, every person who feels they are suffering through MND is uncertain.  But by living in the moment, fully experiencing the small and unexpected joys and beauties of this life as they happen, as Carers we can embrace that uncertainty and not worry about the future. Yes, we all know it will get him in the end but we don’t know exactly how that will happen.  I don’t have to face that now. Everything else but the present moment is uncertain.

Likewise, it occurs to me that if the present moment is a moment of fear, of panic, of grief, of sadness, I can know that this moment, too, will pass. “The present moment is eternal because it endlessly renews itself.”

Of course, there can be other certainties. Here is the rest of the blogpost I wrote on 24^th March 2010:

“If anyone ever asks me 'Which living person do you most admire?' I will tell them 'My husband, Roch.' He knows this. I've told him. He is the bravest person I know.”

Go on, ask me again. The answer remains the same.

July: Successes, set-backs and looking ahead

A month off

July has been a busy month for us. I’ve had a months’ unpaid leave to spend more time at home with Roch, Kate and Tom and to take more time for myself. It’s been lovely that the weather has been hot and sunny, with a real summertime feel about it. I’d like to report that we’ve been out and about a lot but in reality, the hot weather isn’t great for Roch. He loves to sit out and bake in it but the bad air quality does affect his breathing. So we haven't gone far, we’ve spent time in the garden, relaxing together and catching up with friends. We managed to get to a Birthday party – it was like old times, getting dressed up, staying out late and having a laugh.  Old friends Joe and Louis came from Dublin to visit – that’s always fun and relaxing. When I say old friends, Roch first met Louis in ‘Low Babies’ class at school in Dublin in September 1966. They ‘graduated’ together into ‘High Babies’ and thence into First Class. We met Joe when we were at University and he was Best Man at our wedding, almost 24 years ago.  When the lads get together it’s non-stop reminiscence and banter. We never get tired of the old jokes – ‘the leg of salmon’ and ‘the cross eyed judge’. Don't ask. With every visit, there’s a new story and a new gag to go with it.

I've had time to see my counsellor, get my hair done and catch up with some of my mates, enjoying lunches and coffee out. Jenny and Dave have been continuing with their shifts, looking after Roch on the days when I would have been at work, so I've had that time for myself. I've been lucky this month.

Doing our bit

We did our bit this month too for the MND Association and for Dignity in Dying.

Early in the month I went with Roch and the Chair of our local branch of the MND Association to an outlet of a major supermarket chain (which shall for the moment remain nameless). The Branch had been invited, along with two other local charities, to make a pitch to be Charity partner for the year ahead. I really have to say that it was an unbelievably disheartening experience. My understanding is that there is some follow up action taking place, but I would just like to record my own disappointment at the way in which we were treated on the day.

The three Charities were all told to arrive at the same time.  This meant two Charities had to wait their turn. Guess what? The Charity with the terminally ill, disabled person, was left waiting until last to make their pitch. Yes! That was us. We waited an hour. We had been told that each Charity would be given the same limited amount of time to be heard, but the other Charities went way over. By the time we entered the room, it was lunch time and I can bet you those present were pretty hungry. I know I was. We sat at the end of a board room type table. There were ten staff members present. There was no greeting, no welcome, just silence as Roch tried to manoeuvre his wheelchair into position. The man at the head of the table lounged in an attitude of complete disinterest, chewing his pen for the duration of the meeting. Very few of those present dared to raise their eyes and actually look at Roch when he was speaking.
I had to ask myself – Is the disease too frightening? Is the idea of it so intimidating that it is difficult to face a person living with it? This may be true. It is an awful disease, it is scary…If they found it too intimidating, then why invite a person living with MND to come in and pitch? If the Charity is not suitable for your organization, choose a more suitable charity – something less scary and threatening perhaps? You’ve guessed, of course, that the pitch was unsuccessful, but we knew it almost the minute we walked into the room. It felt like they had already made a decision. If felt like a waste of everybody’s time.

A more successful venture was the Branch’s annual Bushy Park Walk, which took place this year on 20^th July. Tom and I walked the walk and raised £520 for the Branch – thanks to the amazing generosity of our friends (you know who you are).

Those of you who watched ITV’s Tonight Programme on 17^th July will have seen Roch on screen helping to make the case for Assisted Dying. ITN spent a day filming with us in June. It was truly exhausting, although an interesting experience. We were pleased with the programme in the end. Roch came across really well, although those who don’t know me may have wondered who the strange woman was who walked along beside the wheelchair or gazed adoringly from the sidelines. The good news is that the Bill has gone on to the Committee stage in the House of Lords so ‘A lot done, more to do’, to borrow a phrase from a former Irish Taoiseach (thanks, Bertie).

My Literary Success!

Having a month off has given me the opportunity to concentrate more on writing fiction. This is one of the reasons I have strayed from the blog. One of my stories has found its way into an anthology which is going to be published in 2015 and I am very excited about this. I’ve had some modest success in the past with my stories but this is the best yet for me. So I want to devote more time to fiction. It also provides me with the great escape…I once wrote a note in a journal, quite early on in the life of the monkey which read ‘Whole seconds go by when I don’t even think about it.’ Well, when I’m really into my writing an hour or more can go by when I don’t even think about the monkey.  

'Frogs', planks and 'dirty dogs'

I had a lucky break this month, as Integrated Neurological Services in Richmond offered a brilliant opportunity for Carers - a block of 5 sessions with a personal trainer for a nominal charge of £5 per session. I had my final session just the other day and I now have a personalised exercise regime which I hope to maintain. Already my arms are stronger. I can feel it when I help Roch to stand or sit up. I wanted a set of exercises that would help me in my caring role but also give me more confidence to cycle. I was feeling very nervous about this  – now I’m not saying there’s been a huge transformation but there’s definitely been an improvement over the month so the bike is about to come out again. Thanks to Chris, who encouraged my feeble attempts at push ups, planks, squats, 'frogs' and 'dirty dogs' with professionalism and humour!

Looking forward

I go back to work on Monday so I have a few days left to enjoy at home. Roch has requested that I go straight in and ask when I can have another month off to stay at home so I guess that's a good sign. After twenty four years married, he still wants me at home!
We have a lot to look forward to - our Brentford Season tickets have arrived...
At the end of next month we are off to Dorset for a week with Tom and Kate. Late September will see the arrival of Roch's brothers and cousins for a weekend, to take in Brentford v Leeds and generally cause mayhem in the house - in a good way!


Life continues in spite of the Monkey.

 

Lekshmi Krishnan RIP

Lekshmi Krishnan lost her battle with Motor Neurone Disease on 9^th July. She was diagnosed with MND in 2007. I only met her once, at the first Bushy Park Walk Roch and I attended, so I can’t say I ever knew her personally, but I do know Jai, her devoted husband and Carer. Jai is a stalwart of our Carer Support meetings, always ready to share his considerable knowledge and experience and to provide advice and support to other Carers.

As always, news of the death of a member of our local Branch comes as a shock and both Roch and I were shocked and saddened to hear of Lekshmi’s death. More and more I find that it doesn’t matter how long a person has lived with the disease, nothing prepares you for their death at the end.

Our deepest and heartfelt condolences go to Jai and to the rest of Lekshmi’s family.

#untiltheend

So you know that Roch and I support a change in the law for Assisted Dying.  I refer you to my blog post (21/01/14) written on the occasion of the death of the beloved but fictional Hayley Cropper of Coronation Street. 

Roch was featured in an interview around that time in the Independent and I included a link to that article in my post at that time.

Recently, Dignity in Dying asked us if we would lend our assistance to the making of a YouTube video designed to raise public awareness and support the campaign for a change in the law. We agreed to help.

Roch and I believe that adults who are terminally ill should be able to choose the manner and time of their death. I speak of those who are of sound mind and able to make that informed choice. They should be permitted to have real conversations with their health professionals about end of life issues. I believe that this  would provide enormous comfort to those who are facing death. 

Public support is growing for a change in the law and my own view is that a lot of the opposition is based on fears that have no basis in the reality of the proposed changes and an ignorance of the safeguards which would be put in place. 

If you're not sure and want to learn more please visit the Dignity in Dying website here:

Https://dignityindying.org.uk 

If you do, you will see a familiar face on their home page.

Roch is in no hurry to die. For me the thought of being without him is to imagine a future that is almost too bleak to contemplate. I try not to think about 'afterwards'. 

We have been married for 24 years and together for longer. You think I want him to die? 

I don't want to lose him but I don't want to see him clinging to what for him I know would be an intolerable existence, unable to move, speak, eat or drink, able to communicate only by blinking, connected to an artificial breathing machine.  For those  who choose this path, I absolutely respect that choice. Everyone is different. This is about making sure everyone has the right to choose. 

Such an existence is not what Roch wants.   But under the current law he doesn't have a choice. 

The YouTube video and link to Roch's story have been posted on Facebook and twitter but for those of you who haven't seen them, you can watch and listen by going to the Dignity in Dying website or tuning in on YouTube.




YouTube Roch's story - #untiltheend


You can find out more at www.yesuntiltheend.co.uk




Please do watch and take the time to register your vote. Ask our politicians to change the law.

It's unlikely that a change will come in time for Roch, but wouldn't you like to have a choice, when you face your own death? I know I would.

Changes...Reflexes...Adjustments...Planning

He is beginning to have to think about swallowing now. He tells me that he finds this disturbing.  He is still eating, he can still swallow, he just has to think about it, the way he has to think about breathing and eating at the same time. For years he has been drinking through a straw and he already has a PEG in place. Bolus feeds are part of our daily routine and yet the news that his swallow reflex is beginning to be affected fills me with dread in a way that no other change has done so far.  

He developed a cough on Tuesday. By the evening, Kate and I were exchanging worried glances. His cough reflex is not as good as it used to be. My head was filled with thoughts of ‘cough assist machines’ and ‘suction pumps’ but we don’t need those yet. Next day we decided to call the GP. Roch himself made the call, asking for an urgent appointment. He told the receptionist that he had motor neurone disease, had a cough and that this was beginning to affect his breathing. He was told that there were no appointments and to call back after 3pm. (Note: I have since spoken to the Practice Manager and they are taking this very seriously). At the time we decided that we could not wait and I made contact with our District Nursing Team. Once again, Community Matron Jo came to our rescue. A message was passed to her and she called me back. By lunchtime she was here to examine Roch (beginnings of a chest infection) and she had written a prescription for antibiotic suspension. I ran off to the chemist and he had his first dose within the hour. He has been feeling really lousy but today is much improved. I won’t lie to you, the experience was a bit scary and I think I’m right in saying he felt more secure with me around to look after him, so I took a couple of days off work. Truth is I wouldn’t have been happy anywhere else.

We are missing our Jenny, who has gone home to Australia for a few weeks. That’s right Jenny, no sooner have you left the country than he goes down with a chest infection. See? If there was any more proof that we needed you..! Jenny recently stayed over for a few nights while I visited my family in Dublin. She and Kate ably held the fort in my absence.  My Girls Friday (and Thursday and Saturday and Sunday..!)

We have a new addition to the ventilator – a humidifier has been supplied. This is necessary because after a night on the machine, Roch’s nose had a tendency to bleed. Apparently the delicate membranes in his nostrils were being adversely affected by the cold air. Now the air is warm and another part of the bedtime routine is filling the humidifier with clean, cool boiled water and turning it on before he comes to bed.

In other developments, he is finding it very difficult to lower himself onto the toilet safely now and so we must use the hoist not just to raise him from a sitting position on the toilet, but to lower him onto the toilet also. Standing at the wash hand basin, leaning against it for stability, is a thing of the past and he has begun to wash his teeth sitting down in his recliner, spitting into a beaker. Well, the good news is, he can still spit.

We have been busy over the past few weeks, working with Dignity in Dying to help with their campaign for Assisted Dying in the UK. You will see more about this in later posts and hopefully I will be able to update you next week.

I know that I have been absent from these pages and this has been commented upon. I can only say in my defence that often, when my mind is full of MND (see 'cough assist machines' above for reference) I try to take refuge in writing.  Sometimes the last thing I want to think about is our situation and so I try to lose myself in fiction.  On a good writing day, an hour can go by without me even noticing – and not one MND thought to the fore. I find that when I’m working on a story, I am thinking about it a lot of the time, so as I’m doing the routine caring tasks, like preparing the medication, the syringes for the bolus feeds; or carrying out household jobs like emptying the dishwasher, chopping vegetables, I’ll be working out whether my story ‘works’, how to finish or maybe deciding I need to change something. First opportunity it’s back to the notebook to jot down an idea, and then I move on to the next task. It occupies my mind. In a good way.

Despite the recent changes in his condition Roch and I are still planning ahead. We would like to reassure everyone that we have no intention of giving up. Roch plans to buy a Season Ticket for Brentford. Come on The Bees! We’ve decided not to do the whole journey thing to Ireland this year, as it ends up not really being much of a holiday, although lovely to see everybody! (Hint: You can come to see us.) Instead, I have booked a holiday for the four of us in Dorset for the first week in September. Many thanks to Mandy Garnett for her recommendation! It sounds just the ticket, and I look forward to some family time in a beautiful part of the world (Thomas Hardy country). We will stay in one of three specially adapted cottages, with all the equipment we need, a treatment room and splash pool. You can even order organic, pre-cooked frozen meals in advance. I ask you, what more can we ask?

Well, we could ask for Arsenal to win the FA Cup Final, I suppose.  For God’s Sake, bring home some Silver can’t you lads, for Roch’s sake!

Off to watch the match with him now…

 

 

 

 

NICE and the Qufora System (no, it's not a new solar system)

It’s time I updated you.  Roch is once more gainfully employed, albeit on a part time basis. Back in January, he was selected by the National Institute for Health and Care Excellence as a member of the Guideline Development Group (GDG) for Motor Neurone Disease. He was recruited following open advertising and he is very pleased with his appointment. A GDG is a group of about 15 healthcare professionals, researchers and patients and carers, convened to develop a clinical guideline on a particular topic. Proceedings, discussions and findings are confidential so we will have to wait until the resultant full clinical guideline is published to know more.

So far, he has attended one full meeting in Central London and one day of training. The training day took place after the meeting so that wasn’t particularly helpful, but you know Roch, he takes all these things in his stride (so to speak). He gets paid for his work and time, and also receives expenses, so he’s feeling “useful” again. His word, not mine.

There are mountains of paperwork and he goes through all of this on his i-Pad and laptop, but it’s a lot of work. On meeting days he gets up at 6.30am. Jenny stays over the night before and is up bright and early to start Roch’s personal preparation regime. For the first meeting, Jenny and Kate accompanied him, as he needs two helpers now to assist when he’s out. Yesterday, for the training day, Jenny and David went along.

Roch had two major concerns regarding the NICE Days. One was whether the day would prove too much in terms of physical exertion. Would he be able to do it? He has proved that he can.

The second concerned his obsession with being, as he calls it, “handcuffed to the toilet”. Unable to predict when he may need to empty his bowels and subject to the occasional urgent bowel movement, how could he contemplate a whole day out in Central London? The old way involved taking two Imodium before leaving, followed by a couple of days uncomfortable constipation before the system cleared again. Following discussion and consultation with different health care professionals, one of whom having pointed out that this method of control could actually impede his breathing (pressure on the already weakened diaphragm), Roch decided to consult the experts again. Back we went to the Continence Clinic at Teddington Hospital, where we saw the wonderful Tizzy, Continence Nurse, who came up with a plan.  I sat there in Tizzy’s office, listening to talk of rectal irrigation and it slowly dawned on me that this would be another nursing task falling within my remit as carer. I admit to feeling pretty overwhelmed at that point. It’s not what you envisage when you fall in love or when you take your marriage vows (that stuff about ‘in sickness and in health’ – it’s not very specific, maybe they should work on that?) I’m sure the last thing Roch wanted to hear was a plan to have something regularly shoved up his rectum so it’s not that I’m without sympathy for the patient. But I’d just got used to bolus feeding so I felt a bit sorry for myself. However, we have been amazed at how effective the new rectal irrigation regime is and I have to say, I’m feeling pretty proud of myself. Someday I intend to write about what MND does to a relationship, but that time has not yet come.

The new system is called Qufora, and it’s a very simple idea. It’s basically about training the bowel to empty at more or less the same time every day. Warm water is sent up the rectum to irrigate and empty the system at the same time every day for a couple of weeks, then perhaps three times a week, until the bowel is trained to know what is expected of it.  Useful as it is for us now, how much more useful when mobility is a thing of the past and bowel evacuation itself (not just predictable evacuation) becomes a problem? Results have been most satisfactory. It’s added about twenty minutes on to the morning ablution time, but that’s not bad. It means Roch can be confident of a clear-out before he leaves the house for his NICE meeting – or for any other reason. So far, the Qufora system is working well, although he doesn’t feel confident enough yet to eat when he’s out.  Jenny brings along some Fortisip feeds and the flush equipment for the bolus feeding. Roch gets a separate room for his exclusive use at the NICE venues, which is extremely helpful.

The morning ritual thus begins with removal of the ventilator mask, then a pee, next the essential espresso followed by a PEG flush and a feed. After that it’s the tablets. Proceeding into the wet room, the hoist is set in place and Roch is raised into the opitimum position over the toilet bowl for rectal irrigation! Lowered again, he is left to enjoy at least a modicum of privacy. The evacuation is followed by his shower and stoma site inspection, possibly some extra cleaning necessary there – but not always. If it’s Twist and Shout day, then that takes place, if not, we proceed with towelling and dressing.

Jenny has seen to the ritual for the two NICE days, allowing me to simply wish them well, before taking myself off to the futon upstairs for further snoozing. That’s the deal. If I’m not working, NICE days are my days off. Yesterday, I spent most of the day doing nothing. For the first time in – I can’t remember when – I slept late, had a bath, watched TV and went for a walk. When I got back I prepared dinner at my leisure and waited for the working man to return.

I could get used to it.

   

 

 

Twist and Shout

So where are we now? Well, the wound or 'stoma site' is looking great and there's minimal leakage, which is such a relief. No more stains on tee shirts. Roch is not feeling as tired and we've started to get out and about again. Last weigh-in, he'd put on a pound. Pretty good as I'd say he'd lost a few pounds over the hospital stay. Kate and I are becoming quite expert in the art of bolus feeding and gradually the kitchen has returned to something approaching normality. 

Ten to fourteen days after the procedure, it is necessary for the 'advance and rotate' ritual to take place. This is to prevent the tissue of the stomach lining from growing round the plastic plate and performs much the same function as turning an earring in a newly pierced ear. 

The 'advance and rotate' was carried out for the first time by the Nutritia nurse. Nutritia is the company who provide the feeding equipment and fortisips. Roch has another name for this ritual. he calls it 'twist and shout'. Actually, he says it didn't hurt but he felt nauseous for the rest of the afternoon. From now on, it's twist and shout once a week.

The goal has been to achieve a new normal, as we've had to do so many times before. I think we're almost there now, and although it feels like something of an achievement, don't expect me to be happy about our situation.  

I'm still dealing with my anger, remember?

Leaky Peg

Things have settled down nicely here since the introduction of the PEG. All praise to the District Nursing team who made sure we knew they were available day or night. We were glad of them over the first few days, indeed the first week. In fact, the first few days were pretty overwhelming. It felt like we had crossed some invisible line - my role felt more like nursing care than Carer and I think neither of us had anticipated that. 

Day One at home introduced us to the concept of the leaking peg. I'm almost sure there's a character in a Georgian novel I once read called 'Leaky Peg' (she gave her infant strong gin) and for some days the name came to mind as I went through the ritual of cleaning around the 'stoma site'. That first morning we thought perhaps the exertion of being brought to a sitting position in bed and being helped to stand, had caused the fluid to leak. Nobody had mentioned this as a possibility so we had no idea what to think. We called Careline to request a visit from the District Nursing team. Community Matron Clare arrived around midday and was very reassuring. She told us that it looked okay to her, that this sometimes happens and just to continue to clean it regularly. Over the next few days the leaking got worse and it was beginning to make Roch feel bad. Stains were visible on his tee shirts and there was an odour. The shirts were changed and washed and we began to put gauze over the stoma site although we knew the nurses felt it was better to leave it uncovered. But it was making Roch feel self conscious. In fact Roch was feeling pretty rough all round. We had definitely underestimated the effect the general anaesthetic would have. For the first time, he confided to me, since the Day of Diagnosis, he felt like a person who was terminally ill. 

On the Monday, we had a visit from Jo Lambert, our Community Matron. She explained that the fluid was produced naturally by the body, which was attempting to heal itself. This made perfect sense to us and over the days that followed, we realised that when the fluid caked on the skin, it resembled scab material. I just wish someone had told us this before the procedure. A PLM friend of Roch's had told him that he also experienced leakage after his PEG insertion and this did help to reassure us. Thank you Bob.

We were supplied with wound dressing packs and sterile solution to clean the wound. The small hospital table in our bedroom came to resemble a nurse's station whilst our kitchen table was strewn with bolus syringes, sterile water, latex gloves and boxes of fortisip. 

The nurses in the hospital had advised against showers for at least ten days but to Roch's immense relief, Clare introduced us to 'Tegaderm' sterile adhesive film dressings, which meant the stoma site could be protected whilst showering. A Godsend.

For a time after we came home, I felt angry and bitter. Valentine's Day came and went and Roch and I agreed to postpone any kind of celebration. I forbore to post a bitter observation on Facebook but I quote it here to give you some idea of how I was feeling.

"Happy Valentine's Day, and for all you lovers out there, here's a thought. As you lean across that romantic candlelit table to feed a delicious morsel to the man/woman in your life - make the most of it - someday you could be feeding him/her through a tube in their stomach."

Impossible for me to imagine being in the company of 'normal' couples, listening to tales of holidays spent together, experiences shared, without feeling bitterly resentful. 

My counsellor is currently abroad but I have been the lucky recipient of what we like to call 'transatlantic therapy' and over the telephone we discussed ways of dealing with my feelings of anger. So if you see me in my car, mouth open and with a no doubt contorted expression on my face, you'll know I am following expert advice and yelling at the top of my voice in a controlled environment. I don't, of course, indulge in this exercise whilst driving.

I have also found that a good belly laugh offers similar relief. Recently a neighbour popped in and we swapped stories of our recent struggles and family crises. Surprisingly, given the subject matter of our conversation, we ended up bent double, eyes streaming as we howled with laughter over really the silliest thing. I mean, what else can you do? It helped so much.