In New York

In New York

Wednesday, 25 March 2015

NHS Choices filming

NHS Choices Filming

We had another afternoon’s filming last week. This time it was all about the Carer, which I found refreshing. The NHS has commissioned a number of short films about Carers for the NHS Choices website - in advance of the new Care Act, which is due to become law in April.  A few weeks ago I was asked by the MND Association if I would help NHS Choices by agreeing to be interviewed for one of these films. I said yes. Each film deals with a different aspect of caring but what they wanted to speak to me and Roch about was Forward Planning after diagnosis with a terminal illness. I had a long chat on the phone with Producer/Director Shiroma and agreed a date for filming. Knowing they would want to ask Roch some questions too, Amelia and I were concerned, as last time he seemed to struggle for breath during filming. This time he did his part with the ventilator on, which helped, but he tires easily so we were careful about breaks.  

It took them about 45 minutes to set up – I find it very interesting to see how they discuss lighting and angle – and move things about. I am always fascinated by the amount of equipment they need. This time we didn’t have a crowd – just Shiroma and cameraman Tom.  We ended up seated at the kitchen table, (they always like the kitchen for interviews, the lighting is good and the colour scheme is cheery) and the interview began.  I launched into what I thought was a great first answer – only to be told that we had to do it all again, at which point I stumbled uselessly through, completely forgetting what I had said before! But despite aeroplane noise and a cheeky interruption by Oscar the cat, meowing loudly to get my attention at one point, we got through it all. I did most of the talking this time, which saved Roch’s voice. Afterwards, my relief at having got through it was tempered by the realisation that filming was not over as they wanted some shots of us during a typical day at home. So we watched a bit of Judge Judy (!), read together side by side and looked through our Wedding album with Kate (of course we do that every day, as you know…) Then we went outside to the garden together, which we often do. I did ask if they wanted me to bring in the washing, but was told it looked ‘more natural’ to have it there.  So we left it, tee shirts blowing in the breeze.

Shiroma took us through our feelings on Roch’s diagnosis, that devastating news which shattered our planned future together, our fears for our children at that time and how and why we tried to plan ahead. It felt odd, thinking about how we were then, shocked and scared, and how we didn’t think Roch would still be around in 2015. We talked about the kinds of conversations we had and who helped us then (the Hospice Nurse, the MND Association), about the house and mortgage and financial planning, me continuing to work and how important that felt to me (and still does), making our ‘to-do’ lists – Wills, Insurance, bank accounts, title deeds. Sure, we had our ‘bucket list’ but we had to be sensible. We couldn’t afford to spend money travelling – we didn’t know how many years we had left together and we tried to be sensible – in case we he did live longer and we ended up spending too much too soon.  Just as well we were sensible.  Sometimes all we could do on a day was agree to add something else to the list, but we both felt a sense of urgency, given the timescale. As the years passed, that sense of urgency lifted and I guess to a certain extent we let things drift.

We did do nice things, of course we did. Roch wanted to go back to places we’d been before – New York, Venice.  We treated ourselves to a week in the sun in February 2010, a thing we’d never done before.

So we talked to Shiroma about how important it is to feel some control and how it helps to make plans – for me as the Carer, who faces being the one left behind (but who knows what will happen?) and for Roch as the person given the terminal diagnosis, to know that he has made provision for his family and looked after all his affairs in advance.

Shiroma was interested to hear that I keep another list in my phone. Every now and then Roch will mention a song that he likes or a poem he feels he would like at his funeral service. Yes, I know it sounds morbid but why not get it right? In fact I began the list a long time ago, when he told me he didn’t like daffodils. He tells me they smell of piss. That was the first item on the list. No daffodils in his room or at the funeral.

I recalled a time when Roch could still drive, and he was giving me a lift into work one morning. There I was, busy thinking about work, mentally preparing for my shift and suddenly Roch starts talking about the cemetery where he wants to be buried. Boy, was I not ready for that conversation. It’s important to pick the right time for both of you. We talked about it later – and it went onto the list.

Shiroma asked me questions, too, about what it is like to be the Main Carer – and we talked about how important it is to ask for help and how difficult that was for me at first. Guilt is part of the Carer’s portion I think. I used to feel I was letting him down if I didn’t do it myself – that I wasn’t coping if I had to ask for help but now I know the opposite is true. Part of looking after him is looking after myself. Certainly these days I couldn’t cope without help.

It was strange to find ourselves leafing through our Wedding album after our interview. Shiroma suggested that we look at photographs while they filmed us and as most of our family photos are loose and in boxes, I just thought an album would be easier to manage.  I looked carefully at the young couple we were then, full of hope and happiness, no idea of what lay ahead.  Yes, I felt sad, but not overwhelmed with sadness.  It’s a beautiful album. I think we should take a look more often and remind ourselves of how far we’ve both come since that day and what a great marriage we have.  I’m not saying our life together has been perfect, but it’s been good and it’s not over yet.
The Happy Couple

Wednesday, 18 March 2015

A World Free of MND

Sunday 15th March brought the AGM for our local branch of the MND Association, the West London and Middlesex Branch. It was a typical March day, bleak, cold and spitting with rain as we arrived. But inside all was warmth, light and friendly greetings - not to mention tea, coffee and cake. As always there were some new faces and it was good to feel that our experience might be helpful for those new to our MND Family. It's beginning to feel like we are 'old hands' now although still with every change in Roch's condition there is more to learn and there are more adjustments to make. I understand the need to compare, to find out if someone has a similar onset and progression - and how their journey has been. They tell you that everyone with MND is different and at first I didn't believe it but it's true - everyone with MND experiences it differently and that very difference can feel isolating. It's one reason why the Open Meetings are so useful, although it's not always easy to meet other people living with MND. It takes courage to show up there, especially the first time round. As always, we shared a moment's silence to remember the friends lost to MND in the past year. 

After the AGM business, which was handled with customary efficiency by Janis Parks (Chair) and other members of the Committee, we had the pleasure and privilege of meeting Sally Light, the Chief Executive of the MND Association. She gave an excellent talk and presentation, which was I found informative and uplifting - reminding us of the fantastic awareness raising with the Ice Bucket Challenge and as a result of the film The Theory of Everything, which has done so much to bring the reality of ALS/MND to public attention. It was good to hear how the money raised will be used by the Association. Members were consulted about this and I remember completing the questionnaire myself. Turns out that over 80% of the membership wanted money spent on research.  A good point was raised with regard to research money being spent on improving the lives of those living with MND as well as research into a cure and I understand that there are research projects looking at improving different aspects of life with MND now, too. In their talks, both Sally and Janis reiterated the goal of the Association - A World Free of MND. 

It is the 20th anniversary of our local branch this year and this meeting was also an opportunity for the Chief Executive to award Long Service Certificates to some of the Founding Members and also to our Branch Contact, Mandy Garnett, for ten years service to the Branch.  

On a personal level, I was flattered and pleased that so many people had read my story and are reading the blog. My writer's ego is a fragile thing, and to be asked if I was a journalist/professional writer and to receive so many compliments about my writing has given me renewed confidence. Many thanks to everyone who took the time to read the story and to those who visit these pages.  

Roch with MND Association Chief Executive Sally Light

Monday, 16 March 2015

In which we meet The Prince of Darkness

Last Thursday Roch had his NHS Continuing Care Assessment. At present the Local Authority pays for 35 hours of care a week through the Direct Payments scheme (with a sizeable contribution from us).  This is regularly reviewed and if the Local Authority feels that proper nursing care is required and that the NHS should be picking up the bill, then the NHS carry out an Assessment for what they call ‘Continuing Care’.  So this is where we’re at. 

After a two and a half hour interview which involved examining how his condition impacts on every aspect of his life, a process both physically and mentally exhausting  for Roch, the gentleman conducting the interview (let’s call him the Assessor) announced that he did not think Roch was eligible for Continuing Care. I found that I was unable to take my leave of him with my customary civility. Not because of the decision he made (although I am not convinced that he has reached the correct conclusion) but because of the unsympathetic way in which the process was carried out.  As always in situations where I am experiencing an unidentified, but strong emotion, I withdraw. Once I knew that this would be his recommendation following the lengthy interview, I took refuge in administering Roch’s bolus flush and feed, barely acknowledging the man’s departure.  I knew I was feeling unsettled and upset, later I knew I was angry.  I certainly felt confused - the process is complicated and the language is dense and difficult to understand. I wish now that I’d clarified my thoughts and distilled them into a question for the Assessor. I imagine that my question would have sounded something like this:

“Okay, so I know I am not part of this decision making process (here I would have indicated with a wave of my hand the Community Matron and Social Worker, also present, who form part of the Panel who will submit a recommendation), as I am only Roch’s Carer, but if I understand correctly – what you’re saying is that although Roch has Motor Neurone Disease, a progressive, degenerative neurological condition, which is fatal – and he cannot mobilise at all by himself, is on a ventilator 18 hours a day and takes part of his calorific intake via the PEG, is on medication and has to have his continence managed carefully – he is not someone who needs nursing care? Is that what you’re saying?”

Now, if I’d asked that question, I have no doubt that the Assessor would have replied impassively with something like:
“Yes. We have gone through all the questions and on the basis of the multiple choice answers chosen, it will be my recommendation that your husband is not eligible for NHS Continuing Care.”

And that would have been that. But at least I would have been clear in my mind that he knew what he was doing. The fact that the disease is progressive apparently doesn’t matter – another assessment will have to be done in the future and we will have to undergo the whole humiliating process all over again. Roch was exhausted and upset afterwards. The guy had no idea. It’s not as if we asked for this, but I felt insulted that we had been put through the process and then turned down. It was as if he was saying (well, he was saying) you’re not sick enough yet, to Roch and to me – you don’t need our help. And we are managing well on Direct Payments and with all the help and support we receive from Roch’s healthcare team.  

For instance, there have been no hospital admissions because we have been successful trouble shooters in conjunction with the Community Nursing Team. In fact it seems to me that we are being penalised for managing Roch’s condition well. We were asked how often we saw the health professionals. If we said often, he seemed to take this as meaning we had adequate support at home – if we said intermittently, he seemed to take this as meaning that we didn’t need regular input from health professionals. He was constantly looking for ways to minimise Roch’s needs. In the section covering ‘mobility’ Roch mentioned that he could lift his left foot slightly to assist with dressing. This was taken as instant proof that Roch can help with dressing and transfers. Well, I’d like the Assessor to try to dress Roch and see how much assistance he can give.

 Meanwhile, the whole exercise made Roch feel like a ‘Bag of Cost’, in his own words.  The NHS batting him back to the Local Authority to continue to pay for his care through the Direct Payments Scheme (as I say, with a sizeable contribution from us).  But for me, it’s not about the money. What really makes me mad is the attitude that we invited this discussion, as if we were fighting for the right to free care from the NHS. You know what? I don’t care who looks after him, as long as it’s skilled and adequate care – but I don’t understand how a layman (who I am not convinced even understands MND properly and certainly made no effort to do so on Thursday) can make that assessment. He wasn’t even listening to the Community Matron – or the Social Worker. He did say that they can email him with their recommendations and that he will include these in his report to ‘the Ratifier’.  Neither agrees with his assessment.

So next we wait to see what the Ratifier says. Roch has christened the Assessor ‘The Prince of Darkness’. Now, he’s not really suggesting that he is the embodiment of evil, but it clearly illustrates how Roch felt about the way the Assessment process was handled.  Need I say more?

Monday, 9 March 2015

Crumpets, Joe Dolan and a Young Man cries...

Blog post Sunday March 8th

High Tea

So the first week of my unpaid leave is almost over and we have been busy.  If I had hoped for a rest or time to myself, well, that will have to wait.
Our lovely Jenny worked her last shift with us over last weekend. It was one of my work days of course, so I didn’t see her, but Roch and I hosted a small get together in her honour on Tuesday and I saw her then.  On Wednesday we spent time with Jenny and her mum Elizabeth – I thought a ‘high tea’ might be in order and served cucumber sandwiches, hot buttered crumpets and lemon drizzle cake. I’d tell you it was civilized but that would be lying – it was far too enjoyable to be civilized. ‘Getting to know you’ took all of ten minutes and after that it was nonstop chatter all round and plenty of laughter. We’ll see Jenny again before she goes home, so no goodbyes just yet.
King’s College Visit: some anxieties allayed

Thursday we were off to Denmark Hill to see Professor Al-Chalabi again.  I had a list of questions this time. Jenny had shared some concerns with me so I was anxious to speak to him. The strain of the journey has been completely lifted from me by our good friend Gerry C, our ‘chauffeur’ on these occasions. He tells us that he enjoys the journey and I like to think that’s so, because we certainly enjoy our time with him – he is such good company. Great Joe Dolan banter. By the way, it was Big Tom and the Mainliners with 'Four Roads to Glenamaddy' (this was a question under discussion).  Don’t forget the Joe Dolan CD next time, Gerry…"More and more and more..."

When we arrived at the Neurology clinic, I went to report our arrival at the reception desk and Roch wheeled himself off to wait. When I turned, he was in conversation with a gentleman whose arms hung loosely by his sides in that tell-tale MND way. His attention had been drawn by Roch’s neck support – a soft and pliable yet effective device supplied by Amber, Roch’s physiotherapist.  A conversation ensued with this man and the family members who accompanied him.  As ever, symptoms presenting in a very different way to Roch,  but what struck me most was how ill equipped that family seemed to be, facing the journey ahead. I don’t know if it had to do with the area they lived in and lack of services there (they told us they had recently been in touch with the MND Association, which had been the first thing we urged them to do) or their bewilderment in general. He seemed to have given up and his loved ones were clearly stricken with anguish. Their situation caught at my heart. They were called for his appointment and we didn’t see them again. I wish them well.

While we were waiting we were approached by the Clinic Coordinator who asked if we would consider taking part in some ongoing research projects. We have agreed to be involved and I was especially interested in one of these. But more of that in a later post.

Professor Al-Chalabi then appeared and called us in – asking Roch’s permission for two others to be present. One, a visiting doctor, the other an Association Visitor. Of course Roch was fine with this.
For his part, I guess Professor Al-Chalabi  is monitoring Roch’s condition and so he completed the ALS functional rating scale again – a series of multiple choice questions around physical capabilities, charting the decline. Roch scored 14 out of a possible 48, which is pretty low but not a huge decrease from three months ago. He scores on speech and swallowing mostly. Everything else is in freefall.

Of course, I had my questions. Jenny had mentioned that Roch had felt faint a couple of times. One occasion I think, really worried her and occurred when he had been sitting quietly in his recliner for some time. So it did not occur after exertion. He had eaten, so she didn’t think it was a nutritional thing. She told me his face drained of colour and he felt very weak and dizzy. It passed off, but it worried her. She wondered if his heart was affected.  Now this is what I love about Professor Al-Chalabi – he never dismisses your fears.  He reassured us and said the simplest and most probable explanation was some dehydration combined with being in a sitting position after eating, which could result in a feeling of faintness, as the blood travels to the muscle extremities. But to be on the safe side he asked for an ECG to be done, there and then. Before we left the clinic, he was able to get a message to us confirming that Roch’s heart was fine.

Jenny had also expressed some concern about Roch’s seeming memory loss. Now I had some reservations about this as let’s face it, his memory has never been great (and there is a certain amount of selective memory loss in there somewhere) but he does forget things. There is a lack of motivation in there too, so whilst it may seem like he’s forgotten to do something, actually he may just be blocking it and I totally get that, however annoying it is to have to keep reminding him. However, these could both be symptoms of depression (perhaps the low dose of antidepressants isn’t working) or a result of lack of ventilation: Is he using the ventilator enough? Are the settings on the machine correct? Throw in the increase in fatigue lately – maybe it’s the breathing getting worse?

What I did not want to hear was any mention of Frontal Lobe Dementia, which affects 5% of MND patients and results in distressing personality changes. Personally, I did not think this was in the mix at all for Roch, and Professor Al-Chalabi confirmed this. First of all, he was quick to set me right. Memory loss, he stressed, is NOT a symptom of FLD. The patient becomes stubborn and difficult to live with - here I could not resist a joke, in my defence, maybe it was the relief – “So,” I interject, “If he did have it, how would we know?” Hahaha

In fact, all present enjoyed a laugh – even Roch. I don’t think it’s the first time Professor Al Chalabi has heard that joke.

We suspect that the increase in fatigue, memory loss and lack of motivation could be down to a decline in respiratory function but this will need to be confirmed at the Royal Brompton. Happily, we are off there tomorrow for an overnight sleep study and they will do the necessary tests and readings so we should know more by Tuesday. Professor Al Chalabi was keen that the appointment was kept.

On our way out we spotted a familiar face. What a joy to meet Liam Dwyer @liampdwyer again and his wife Anna. Liam is something of a celebrity now in MND circles, a tireless campaigner for MND awareness and disability rights, ably assisted by Anna who is always by his side.  Being with Liam just makes me smile. His own smile is infectious and his positivity, cheerfulness and humour are a joy. Meeting him on Thursday quite simply made my day brighter. I should mention that Liam was nominated this week for Charity Campaigner of the Year – he was one of three finalists. Although he didn’t win, he did win MND Campaigner of the Year status – well deserved.

Dignity in Dying: Tears are shed

Friday brought the first shift for one of Roch’s new Personal Assistants, who turned not a hair when informed that we were expecting a film crew that afternoon, to do some work with us on behalf of the Dignity in Dying campaign.  I had popped out to do some shopping and returned to find mountains of equipment outside the house and our small sitting room full of smart, fashionable looking young people (aside to my children: of course when you and your friends are home, this is a common sight).

As always, Roch and I were well looked after by Dignity in Dying Press Officer Mickey and although it felt like a long and tiring afternoon, I think I can say that it was worth it. Roch did really well and it was his new PA who noticed first the signs of fatigue, suggesting to me that it might be time for a break. She remained totally focused on her charge throughout and even agreed to be filmed assisting him! Full marks on the first shift Amelia.

I did have to have a word with Roch afterwards, however, as only one member of the crew cried during his interview. You can do better, I told him. Last time, the whole crew were in tears. For the record, though, I was very impressed by the Silverfish film crew, including the young gentleman who shed a tear. I found his genuine sympathy and concern very touching. Thanks to Nathan, director and interviewer for his focus and insightful questioning. By the way guys, moving the table for filming turns out to give me more space near the dishwasher so thanks for that! ;) 

You will have to wait until the film is complete before seeing Roch’s input and for an update on the campaign. Mickey and the Silverfish film crew are travelling round the country this coming week to interview other supporters.