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.