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?

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

Blog post Sunday March 8^th

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.

"Writing from the Heart"

Deirdre Maher, whose husband Roch has been living with MND for over five years, tells us about the message behind her recently commended short story and the importance of her writing to her.

Our local Branch of the MND Association, the West London and Middlesex Branch, have been good enough to publish an article about me and my writing in their latest newsletter. Many thanks for the press coverage folks!  

To read the newsletter, including my article, just click on the link below. 

Cheers!

http://www.mndassociation.org/Resources/MNDA/West%20London%20and%20Middlesex%20Branch/february.pdf

Losing Jenny

We are entering a time of transition. Many of you know Jenny, Roch’s Personal Assistant and Caregiver. Well, Jenny will be leaving us at the end of this month. She is moving back home to Australia. I think we’ve all been in denial a bit around here. We’ve been very down to earth and practical about it, lining up possible candidates for interview, drafting interview questions and discussing hours and logistics and arranging suitable dates for the successful candidates (we think we need to engage the services of more than one person) to shadow Jenny before she leaves.  For some time now I have been feeling stressed about it, waking at night and feeling anxious about the future. My workplace has been very understanding and I will be on unpaid leave for the month of March, to help and support the new people at home, as well as spending more time with Roch.

So we ARE dealing with the practicalities. We don’t know who will replace Jenny yet – we have to make our decision within the next few days. We’ve met with and interviewed four people now, and they all seem very nice.

But when I say ‘replace Jenny’ – well, nobody can do that. My Mother often says to me “There’s nothing good about MND.”  She’s right of course, but good things have happened to us since Roch’s diagnosis and one of those good things is Jenny. Jenny doesn’t just look after Roch. When she walks in the door, she brings a special energy all her own – a vitality and positivity which energises all of us. I walk past the door of the wet room at shower time and hear her singing – sometimes I hear them both belting out a tune – followed by a burst of laughter, as they enjoy a joke together. It always makes me smile and my heart actually lightens a little. He’s happy. She makes him happy. She takes no nonsense from him, mind you, but he likes that, too.

But Jenny doesn’t only look after Roch, I suspect she looks after all of us, me included. In fact, especially me. She knows when I come in tired from work and there’s always a twix and a cup of tea ready. She knows when the recycling needs to be done and when Oscar The Cat’s paws need to be wiped before he can be permitted the run of the house. She knows how I like things in the kitchen. Jenny makes my life as an MND wife easier in lots of ways.

We will miss Jenny not just because of all she does for us but because of all she is to us. I try to have faith in the future. Who knows what joys and blessings the next Person will bring into our lives? 

But they will never replace Jenny.

 

 

If you want something done, TWEET!

Seriously, I want to pass on a very useful piece of advice: 

“If you want something done, tweet about it!”

Back in November, some nuts and bolts on Roch’s recliner chair worked themselves loose and rolled onto the floor.  The mechanism of the chair was unaffected but the loss of the bolt made the whole structure pretty unstable, so we called Medequip. Sometime around 12^th – 17^th November, they sent somebody to carry out repairs. The repair man put the nuts and bolts back in place but explained that he didn’t have the proper tools or fixative to do a permanent job. He promised to ‘put the paperwork through’ and send someone else to carry out a permanent repair job. 

Weeks passed and eventually, the nuts and bolts worked themselves loose again and rolled across the floor, hotly pursued by our cat. I spoke again to someone from Medequip and also emailed our OT, and Medequip sent a second guy out to do the repairs I think around 17^th December. When I asked him if he had the fixative and the correct tools for the job he was puzzled and told me nobody had mentioned this to him. So once again, a temporary job was done and he explained that his colleague had most likely not put the correct paperwork through. He told me that the nuts and bolts would eventually work themselves loose again…well, we knew that. He said we needed a specialist engineer.

Well, we got through Christmas before the nuts and bolts worked themselves loose again and this time I emailed our OT to say that if the next person from Medequip arrived without the means to carry out a permanent repair I wasn’t even going to let him in! I should mention that calls had been made to Medequip on at least two occasions where vague, puzzled voices informed us that there was nothing on the system about further repairs.

Anyway, at this point, in mid-January, our OT forwarded me an email she had sent to Medequip explaining how cross I was and their response assured her that if they hadn’t been out already, they would be out the next day. Well, they hadn’t been out already and we stayed in all day next day, but nobody arrived. 

That email exchange took place on 14^th January. By 27^th we had heard nothing, so I took to Twitter. 

@MedequipUK still waiting for your guys to fix riser/recliner for my husband who has #MND. 2 months on after 2 visits. Not good enough. H&S

I had an apology and response on the same day from @MedequipUK and within two days a pleasant and capable young engineer arrived and fixed the recliner properly. Now when we lower Roch into the chair using the hoist, it no longer rocks precariously and is perfectly stable.

So the moral of the story is, if you want something done, TWEET! 

In which I confess to feelings of guilt and resentment…

Blog post written 6^th February 2015 

It’s hard to believe that a year has passed since the PEG was fitted.  I read over my February 2014 posts the other day and reflected on those dismal days: 

“One Man and His PEG”, “Twist and Shout”, “Leaky PEG”.  

Well, one year later and Roch is still eating, although now we feed his meals to him. He can still eat a lunch and a dinner although in smaller portions and the food has to be cut into bite-size pieces. More and more I find myself becoming preoccupied with his nutritional intake.  I’m very conscious that he won’t always be able to eat so I want to make sure he gets the food he likes, the meals he enjoys.  He can’t stand up anymore so we haven’t weighed him lately. It’s hard to tell if he’s lost weight, just looking at him. The last time the nutritionist came to visit she told me that she thought he should be having 30ml calogen (concentrated protein) bolus fed 3 times a day. I felt guilty as he only ever has one calogen feed a day. It makes him feel full and he wants to eat real food for as long as he can.

He starts off the day with a fortisip for breakfast.  We usually get some lunch into him – sausages, tomatoes, white pudding and egg or spicy noodles with a fried egg on top – these are the current favourites.  Recently he’s even had a buttered crumpet for a snack in the afternoon. Then, later, it’s the calogen feed – but not too late in the afternoon or it takes away his appetite for dinner. He usually has a good dinner, although the portion is smaller. So it’s about gauging how much he’s had – has he eaten enough, should we be giving him another fortisip? More calogen?  He says swallowing isn’t a problem but to my eyes it looks like he has to put more effort into it.

Sometimes it seems that my whole day revolves around feeding him and I feel bad because I can feel myself resenting it. I think of my parents, and how my mother spent so much time in the kitchen, preparing meals. How, when we were on holiday, so much of her time seemed to me to be wasted on food preparation. Why couldn’t we just have had a picnic? Thrown some snacks in a bag and headed off into the sunshine? Instead, we sat together in hot stuffy kitchens in various beauty spots around Ireland, eating chops and gravy with mashed potatoes in the middle of the day, or dragging our heels with my father in the local butcher’s shop, while he chose the best cut. It was the way they wanted to do things, I guess, two hearty meals a day. She probably wasn’t unhappy in the kitchen – I hope – and my father did his share too, but I hated the thought of being stuck in the kitchen when there were so many other things to do. Even as a child I viewed it as a waste of their time. I vowed that when I was grown up, I would do things differently. 

So on the days when I am tied to the kitchen cooking sausages at lunchtime, through my frustration the irony is not lost on me. And of course, it’s the usual Carer’s package of conflict and guilt. Because I know that when the day comes when Roch can no longer eat a sausage, I will look back on these days, and weep for their loss.
     

Dying Without a Voice

http://www.mndassociation.org/news-and-events/Latest+News/join-our-online-flash-mob

Dying Without a Voice

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

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

What they are asking us to do:

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

http://www.mndassociation.org/news-and-events/Latest+News/join-our-online-flash-mob

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

Please sign up and add your voice.

Roch's Voice

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

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

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

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

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

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

Please sign up and add your voice, too. 

http://www.mndassociation.org/news-and-events/Latest+News/join-our-online-flash-mob