NHS Continuing Care: An Angry Blogpost

Can anyone tell me why someone with MND has to endure a three hour NHS Continuing Care ‘Review of Eligibility’ interview? If his level of need rendered him eligible in September, do they actually believe his condition might have improved? The more I think about it, the angrier I become.

We had asked for his NHS Continuing Care budget to be reviewed, as the amount of money spent on his care at present, exceeds the budget agreed. This is largely because we have been trying to arrange more care at night. The only reason we can spend extra is because of the backdated payment they gave us after the fiasco of their first assessment (where the submission was never lodged and we waited from February 2015 to September of that year for the next assessment, where eligibility was finally agreed). 

So when the CHC Assessor arrived on Monday, we were expecting a review of the budget. When the dreaded Decision Support Tool was produced our hearts sank. If we had known he was being re-assessed for eligibility we would have arranged for one of his District Nursing team to be present. A social worker who had never met Roch before arrived after the Assessor. At least we had had the forethought to invite Paula B from Ruils in Richmond to attend. Paula has been an absolute Godsend throughout the whole Direct Payments/transition to Continuing Care process and in fact helped to draw up Roch’s first Support Plan for the Direct Payment scheme. 

The Assessor really did not seem to ‘get’ Motor Neurone Disease. The Decision Support Tool (I have spoken about this in previous blogposts and complained about it before the Parliamentary Select Committee in May) is dense, complicated and utterly unsuited to someone with Roch’s condition. 

As she left, she told Roch repeatedly ‘Not to worry,” but qualified this by saying that she could not guarantee the decision of the Panel. At times she would turn to the Social Worker and ask “Is that really more a ‘social’ than a ‘health’ need? She explained that the need has to be predominantly ‘health’ to qualify for NHS Continuing Care. 

IT’S A TERMINAL ILLNESS! 

IT’S PROGRESSIVE! 

He is under the care of three Consultants right now. Is THAT a ‘social need’? 

I am so mad right now.

So of course we will worry. Apart from the worry there is the fact that three hours of this interrogation left Roch utterly exhausted, not just from the effort of answering questions - obviously I helped with this - but emotionally drained, too. That’s because he is not a well man.

Did I mention that he has Motor Neurone Disease? Who ARE these people? 

The Monkey Makes Some Progress

Well, back down to earth and we have entered another phase in the MND journey. Pump feeding in earnest. For some time now there has been a concern that Roch is not getting enough nutrition but he was holding out against pump feeding (being attached to a device which pumps liquid nutrition continuously through the feeding tube in his stomach). His reluctance was understandable. Some months back, we tried it during the day at home and he felt it tied him to the house. In practical terms, it's possible to attach him to the pump and bring it with us when we leave the house but I think we both felt too anxious to do that and so we have ended up pump feeding at night. 

In fact, it's working out really well. He is definitely putting on weight and now we don't have to worry so much about whether he is getting enough nutrition during the day. He has one meal in the daytime, and he can decide to eat whatever he wants. It's still tiring for him to eat but he feels it's worth it - he can still eat and taste the food.
It means he has to have his meal earlier, as it's not a good idea to pump feed on a full stomach - but that's okay, we have just adjusted the routine. 

There have been other changes to the routine. We used to remove the ventilator mask in the morning, to give him a few hours sleep without the mask, but now he needs to keep it on for longer.  I won't lie, it was a bit of a relief, as it meant we wouldn't have to get up early on days off work, to take his mask off. But now of course, every morning, the feeding tube has to be detached from the pump and flushed through (before and after each feed) with 150ml cool, boiled water. One task is replaced by another. It's the reality of life with MND. 

I can't help feeling rather proud of myself for mastering all this pump feeding stuff. We did get training. In fact we had a rather supercilious and annoying Nutricia nurse who came to train us but I still felt quite intimidated by the whole business. I think his Carers would agree - but we've all learned how to do it and even done our fair share of troubleshooting...

The monthly delivery from Nutricia Homeward is growing (syringes, Fortisip drinks, Nutrison Protein feed for the pump). The bedroom downstairs is beginning to resemble Del Boy's flat...

We were worried that having 800ml of liquid feed overnight (soon to be 1,000ml), he would need the toilet more often at night time, but this hasn't proved the case - maybe one extra pee? Once or twice a visit to the loo has been necessary, but I think that's been when he's eaten later in the day and we've adjusted the timetable accordingly. The trusty urinal bottle is our friend at night, as he doesn't have to leave his bed. 

Another significant change for Roch is that he can no longer turn in bed. He was managing (with difficulty) to turn himself once when settling himself to sleep, but he can't do that anymore. So in general now I settle to sleep on the futon beside his bed (forward thinking - thank you Eoin Maher for getting it downstairs for me back in September) and when he needs to be turned I rise sleepily to assist. When the night time Carer is here (for the nights before my working days), they sleep on the sofa bed in the kitchen and perform the same task when called). 

Settling to sleep downstairs with him has been good for us. After his bedtime routine is complete (from chair to bed, attached to ventilator and pump, dressings on and creams applied etc.) and I am ready for bed, I plug us into his reading device and we lie beside each other, listening to a book together. It's an opportunity to talk about the day and how we are feeling, discuss plans and generally feel like a regular married couple for a time. Lately, because his ears have been blocked (wax build up? Ventilator use - have other users of Bi-pap machine experienced this?) conversation has been minimal, but just being there is nice. 

I usually fall asleep listening to the book and once awake for the turning and he is settled again, I take myself off to my bed upstairs, to enjoy uninterrupted repose until it's time to detach him from the pump in the morning, unless the relentless beeping of the alarm heralds a visit downstairs. But this rarely happens these days. It may change. I suspect I may find myself spending more time on the futon in future. My back will not be happy. 

Texting is becoming difficult for him, as no doubt some of you will have noticed. It's funny when I remember that when we first met and for many years after, this medium of communication didn't even exist. Now we rely heavily on it so I am beginning to really miss being able to text him directly. I can text whichever Carer is on duty for the practical things and they can confer with him and get back to me - but see how our personal communication becomes eroded? I can see how a distance could gradually form between us. This is why it's a good thing to keep one or two days a week, when it's just us and when I am the one here to look after him. I can't do it every day and I need my time but if I never do it? That doesn't work for me. 

The hot weather is a challenge for him. There's no doubt the bad air quality affects his breathing. The ankles tend to swell so it's feet up as much as possible and cold compresses at night. The trusty fan has been retrieved from the attic and is proving invaluable. We've had it for at least 14 years but as it only comes out for a few days every year (if we're lucky) it's lasting forever! However, the good weather has more than a few advantages, and sitting in the garden together enjoying the sunshine and having a cosy chat is definitely one of them. No texting required.

Clear blue Skies - July 2016

Graduation 2016

Three years ago Kate graduated from Exeter University. It was a hot July day and even then it was a challenge to make sure Roch made it but we did it and it was a memorable day. There we were, as I recall, sipping champagne and eating cupcakes (very Exeter), surrounded by blue balloons, when Roch turned to me with tears in his eyes.
"I won't live to see Tom graduate," he said. Feeling a bit like Samwise Gamgee encouraging Frodo (for all you LOTR fans), I duly replied,
"You never know, Roch, you never know, it may happen yet."

And it has...

On a hot July day last week, we watched our son graduate from Southampton University. Best moment of the day was when we turned and saw him emerge having been robed in preparation for the ceremony. The sudden sight of him with mortar board and robes took my breath away. Maybe that was my proudest moment.
Tom had been active in making sure all was prepared for his father's comfort. The wheelchair space in the lecture theatre was by an exit, but with a great view of the stage. Nearby was a room we could use if Roch needed the ventilator or a rest. He didn't need it during the ceremony, but later in the afternoon we took the opportunity to 'plug him in' for a while and he dozed.

Favourite Son

The Beauties!

Another good moment for me was when a young helper approached to ask if I needed directions (all very well organised) as I looked round vaguely, wondering where to pay for the official photographs. "Are you graduating today?" she asked.
I know, I know, she probably thought I was a mature student - but even so - that put a spring in my LK Bennet step! (Those shoes have accompanied me to every major event since 2011, by the way...)

Later in the day I had another surprise. As we waited for our meal to be served, the family presented me with a small (but very beautiful) gift, to recognise my part throughout the last six years in making sure it was possible for both our children to leave home to go to University, despite Roch's illness. I was taken completely unawares. In fact, they made it easy for me as when Kate was away, Tom was at home and when she graduated and came home, it was Tom's turn to go, so I always had the support at home of one of our children.
It was a very precious family moment.

Seven years ago, Kate was 17 and Tom was 14 and as we faced the reality of his diagnosis, we hoped that somehow Roch would live to see them both leave Secondary school. "If only we can get them past their A Levels", we said to one another.
Now they are all grown up and they still have their father. One in the eye for the monkey.

14 July 2016

Stick out Your Tush...

Some professionals just rub me up the wrong way. Today a member of our local district nursing team called in unexpectedly. We had never met her before. The loose arrangement is once a month to check the pressure areas. We have asked them to text or call in advance but there's never any notice.  He's usually on the toilet or in the shower. Today, for a change, he was in his chair.
She didn't introduce herself, she didn't smile, she rather testily asked "Who's the Carer?" As Amelia and I were both there, this clearly confused her.
I pointedly introduced us all by name and asked for her name (she seemed surprised to be asked). Business like I can understand and work with - but offhand bordering on rude is something else again.
I get that they're busy but something about the way it's just assumed Roch never goes anywhere and will be here to display his 'pressure sites' on demand - I was forcibly reminded of Blazing Saddles and that final scene "Stick out your tush..la la la la.."
Maybe she was just having a bad day. Well, she certainly didn't make mine any better.
Watching this again did though.

https://www.youtube.com/watch?v=JMK6lzmSk2o

There's nothing good about MND. An Anniversary Reflection

Yesterday it was seven years since diagnosis. I’ve been going through the blog, reading my posts for each anniversary. I notice that as each year passes the frequency of my blogposts diminishes. I have spoken before about hitting a wall with this, feeling too sad, tired and demotivated to blog. What is there to say? What acceptable words can I find to describe how I’m feeling? Nobody wants to read depressing blogposts. But that’s the reality of MND. As my mother said years ago, “There’s nothing good about MND."

2010 So tomorrow is 16th June. A full year since Professor Kaplan gave us the news. I remember sitting in a narrow hallway outside his room. I stared at a sign on the opposite wall which said'Apologies for the inconvenience caused by the refurburbishment' (sic) and watched another couple nearby who looked just as small and scared as I felt. I think Roch and I both knew it wasn't going to be good news but we were stunned anyway. It was a really hot day and afterwards we went for lunch in Twickenham. Both of us cried a bit. And now a year later, we've had a good year, like I said in my last post. Maybe what we're feeling is the knowledge that each year now will be not quite so good as the one before. And I keep telling myself that I need to live in the moment and I know it's true, but somehow I'm finding it more difficult than ever. There is one thing that is guaranteed to cheer me up. Guess what it is? Today I drove round the corner of our road and the first person I saw was Roch. I immediately felt better, lighter. He can drive me crazy sometimes, but no-one is there for me like him. He's my man.

2011 It's an anniversary today. Two years now since the diagnosis. That's pretty good. It's reason enough to celebrate. He's just beginning to need the wheelchair, he's still working, still able to enjoy food and drink. We're lucky I guess. I had a look at my post of a year ago. Roch was using the two sticks, and getting used to the rollator. It was just before our Venice trip. There's no doubt that the monkey is getting stronger but we're not done yet, not by a long shot.

2012 “This is not the end, it is not even the beginning of the end, but it is perhaps the end of the beginning." Churchill 

So here we are, three years on and so much has changed. From the word go, our strategy has been to maintain normality as much as we could and we succeeded, I think. It was the best approach, especially for the children. But in recent weeks we have had to accept a new approach. Phase one is over.

In 2013 and 2014  I did not record my feelings on the anniversary. 

2015 Coming up to the sixth anniversary since Roch’s diagnosis, it feels like a time for reflection. Neither of us thought that he would last this long and to my surprise I’m finding that reaching this stage requires a change of mind-set on my part. In fact, our reactions to the reality of his survival well beyond initial prognosis appear to me to be quite different and I find this interesting. On my part I realise that I no longer view my husband as someone with a terminal illness. It’s true - his deterioration has been so slow and I am so used to his level of disability that although I find it trying at times and struggle with the limitations it imposes on both our lives, I don’t see him as a dying person. To me, he’s just Roch. I have ceased thinking about his death and this means I need to focus more on acceptance of Life as it is now and for the foreseeable future. 

2016

Well, reading through the above entries, I'm not sure I'm following my own advice. The longer this goes on, the worse Roch’s condition gets and the more I grieve for a life together lost. It's hard to accept Life as it is now. 

Last night I went outside in the dark to bring clothes in off the line. In the beautiful scented summer air of our garden, I watched the moonshadows cast on the grass and wondered how I will feel about it all when he is gone. About the garden, the house - everything. I think on some level I keep it all going for him, for us. Our home, our garden. The place we created for our family. Without him, it won’t feel the same. I try to focus on the now but the Monkey’s strength is growing and it’s hard to ignore it. Elsewhere in the blog I speak about the Wisdom of Uncertainty and how each moment, even if full of pain, will pass, the moment endlessly renewing itself. We never know where the next moment of joy will come from. Each moment that passes brings us closer to the final moment and then that, too, will pass. What then? Live through it, I guess. There are still moments of joy but the Monkey’s shadow is long.

People ask how things are, how we are. Most people don’t want to know the truth. Today I found myself answering someone as honestly as I could. I said that his condition continues to head downhill, that we have begun pump feeding at night as we are worried about his nutrition levels, that he is tired all the time, that it is seven years since diagnosis. That really, we are not feeling too great. This was met with dismay. So I rescued them and assured them that he could still enjoy a pint. Relief was palpable. We focused on the positive.
“There’s got to be some nutrition in a pint!” they remarked cheerily. 

It’s all very difficult, isn’t it? People mean well and they are fond of us and wish us well. I do know that. And I am conscious in writing this honest blogpost that people will worry and that is why I hesitated before I began. But really I can’t protect you. He’s worse than he was, but that’s to be expected. It’s harder than it was, but that’s not surprising. It’s all getting tougher, but I think you knew that.
All I can say is, there’s nothing good about MND so if you ask me how things are, be prepared for an honest answer.
Oh and if you do ask, and I tell you,  please don’t try to give me advice or tell me to be grateful for the little things. I don't expect you to solve it for me. You can't. Just acknowledge that there’s nothing good about MND and be brave enough to listen. 

All Party Parliamentary Group on Carers - The Carer's Strategy

Back from Clare I had to shift my focus sharpish. Before my holiday I had been asked by the MND Association to speak at Parliament before a joint meeting of the APPG on MND and the APPG on Carers about my experience of caring for Roch. Rt Hon Alistair Burt MP was to be in attendance and the purpose of the meeting was to discuss the Governments Carers strategy. It was a chance to put forward concerns and highlight the issues. On the flight home I began to think about what to say. I knew I had five minutes to speak and both the MND Association and CarersUK had requested that if possible, I include a number of points they felt it was important to stress to the Minister, both points of information and issues of concern. I decided that I would try to weave our experience around these points.

For an excellent report on the meeting I can do no better than refer you to the following link from the CarersUK blog. I hope I presented, in the time allowed, at least some of the universal concerns shared by my fellow carers, and not just those caring for someone with MND.

https://www.carersuk.org/for-professionals/policy/expert-comment/5200-the-carers-strategy-at-the-appg-on-carers

An impressive number of MPs attended and the meeting was chaired by Baroness Gill Pitkeathley.

I think so many MPs came along because so many have been affected by a caring role. One MP referred to the 'Army of carers out there' and it was generally agreed that more and more people are unexpectedly faced with the prospect of caring for a family member. I was happy to hear that there was understanding about how at the moment of diagnosis, life changes forever for the person who is about to be catapulted into a life as a Carer and MPs agreed that speed is of the essence in offering support and information at this early stage.
Afterwards I had the pleasure and privilege of meeting with Barbara Keeley MP, Shadow Minister for Carers, who spoke so eloquently during the meeting about Carers' needs.

With Barbara Keeley MP and Richard Arkless MP

 

With our Tom, who supported me throughout the day. 

In the Shadow of Big Ben

 

The Minister speaks

I spoke also with Richard Arkless MP for Dumfries & Galloway, who recently lost his mother to MND. There is a shared understanding and mutual compassion between people whose loved ones have MND. After the meeting we hugged. He told me that my speech had resonated with him in all respects. All around me I saw the human face of Parliament and indeed Alistair Burt made this very point. We think of Westminster perhaps as a place very removed from us but the reality is that MPs and Peers are human too and the issue of caring touches so many - some disclosed their own personal experiences around caring. For all of us Carers out there this is a good thing, because it means it is an issue close to their hearts and they will want to make sure the new Strategy on Caring does right by Carers. 

The Minister announced that the public consultation was to be extended by a month, so there is still time to have your say and a chance to influence the Government's strategy on Carers. 

https://consultations.dh.gov.uk/carers/how-can-we-improve-support-for-carers

A Carer's Break

It's been busy lately and I've been lucky. In mid May I had a break from caring when Roch's long awaited respite stay at Princess Alice Hospice came round. For months those with my best interests at heart (and Roch's) had been encouraging me to take a break and get away, to do something just for me. I wanted to, but it took me a long time to get it sorted. The hospice stay was arranged well in advance (before Christmas) and I found what I thought would be the perfect holiday for me - a painting course in one of my favourite places in the world.

The course was called 'Abstracting the Landscape' and was set in County Clare, in the West of Ireland at The Burren College of Art, an extraordinary place which blends in perfectly with the limestone landscape of the Burren.
I can't describe how beautiful this place is and how much it means to me. For years our parents brought us as children on holiday to Ballyvaughan, a small village on the shore and when our children were young teenagers, Roch and I brought them there, to clamber over the rock and swim at the beach in Fanore.
In fact, the last time we were there was in 2010, the year after Roch's diagnosis. There was a strong current at Fanore and he struggled to bring himself ashore - the weakness in his legs and arms meant it was no longer safe for him. I remember that he fell on the wooden walkway, on the way back to the car. It was the beginning of the end of that kind of family life.

Fanore

So I guess everywhere there were memories for me, happy and sad. Perhaps it shouldn't have come as a surprise to find myself overcome on Day Two. I seldom cry but something in me seemed to break and I found myself unable to stop. I hardly knew why or what had caused it. Our teacher told me later that she thought I was abstracting the landscape from within as well as without. I was unprepared for the intensity of the experience. I think almost without realising it, I had tapped into something deep inside and out it came. The studio was open 24 hours a day and so although I took myself off on Tuesday afternoon, back I went with Maura in the evening to make up for lost time and managed to produce some work.

Abstracting from Within

The level of dedication, skill and hard work in our group of Abstract painters was impressive and I was proud to be a part of it.

I cannot praise our teacher highly enough. Her skill as a painter is phenomenal. I found some of her work breathtaking. She makes it look so easy! We could not have had a more encouraging or approachable teacher - or one with more knowledge of her craft.

Last Day Selfie with Maura and teacher Cora

http://www.coramurphy.com

Surrounded by the beauty of the Burren landscape and the support and friendship of the group (not to mention the loving presence of my sister, Maura) I couldn't have had a better break.

https://www.burrencollege.ie

Back to Blog

For the last few months I have been avoiding the blog. I have been struggling with new medications to control the migraines. Fatigue levels have been high, mood has been low. Could it be the medication, is it the menopause, or is it simply that life with MND is so shit? I've been here before - in the sense that I have been reluctant to share on the blog. If it's not real, I don't write about it here because I have to be honest. On the one hand, I don't want these pages to be simply a boring moanfest - on the other hand, this is meant to be about the reality of living with MND and that's where I've been at.I put finger to keyboard early this month and was not happy with the result, but I publish it below to give you a flavour of the mood.

It's complicated having Carers here. Roch copes with it a lot better than I do. My room has become my sanctuary but although I have more time to write, I have hit a brick wall. I seem to have lost my motivation and my confidence has plummeted. The only way up and out is through and I know this but no matter how much I tell myself to get on with it, just do it, write ANYTHING, I stare at the blank page or at best produce a paragraph of rubbish and I don't know where I'm going with it.

So, welcome to the moanfest.

Blogpost 6th April 2016

Seven Years On - Does it get easier?

The word for me at the moment is Intrusion. For so long I looked forward to a time when the day to day caring tasks could be shared, giving me more time for myself, resulting in a less exhausted Deirdre. Now we have what might be called a team of Carers (or Personal Assistants) and I’m still not happy. I tell you now I did not anticipate how difficult I would find the constant intrusion into our home, our space. It’s not that they are not lovely people or that they don’t look after Roch well but essentially they are strangers in our home. I thought I would get used to it but having someone here every day - although this was the plan, the plan for ME - I find incredibly difficult at times. 

I mentioned this to an old friend recently, and I found her response very helpful. Maybe some of you will too. She reminded me of a time in her own life when she had to accept help in her home. It made her angry, she told me, and she resented the intrusion so much that she sometimes found it difficult to hide her feelings from the people who came to help her. She said she felt so bad about this that she spoke to her priest about it and he told her “You don’t have to be grateful, you just have to be civil.” She said that helped her enormously. 

It can be hard work, too - there are lots of issues to deal with, both personal and practical. We have a lot of help from RUILS but employing a bunch of Personal Assistants brings its own challenges in many ways. Rota, training and induction, insurance, payroll (Roch and RUILS deal with this) - simple human interaction feels beyond me sometimes. Their presence, welcome though it is on a practical level, is a constant reminder of how much further this disease has ravaged him physically. It’s hard for him of course. He’s not an old man. He’s only 54 and who wants to be wholly dependent at that age? I know it’s hard for the kids, too. It’s been seven years and the last four years have been gruelling. Our kids are marvellous. They are, quite simply, the Blessings of my life. People tell you to count my blessings and I have.

Count Your Blessings

The weight of her head on my shoulder,

the warmth of his fingers in mine;

these are the blessings I treasure,

their hearts beat the measure of life.

DM 2016

                           

Oddfellows

After a long absence, I recently attended an MND Carer’s Meeting. My situation was very different from that of the other Carers present. Both had partners recently diagnosed. I feel for them but how can they support me? My needs are very different from theirs. I mentioned that now we had Carers to help.

“What do they do?”

“Well, they get him up in the morning and shower and dress him…” I began.

“Oh I don’t mind doing that for my partner.”

I know the remark was less a comment on me and more a personal reflection on their own situation, perhaps checking in with themselves about where they were with that task - but it was difficult to hear and inside my immediate response was defensive and angry.

“You wait until you’ve been living with it for seven years, mate, and showering your partner for four of them.” 

Of course I didn’t say that. 

Roch calls himself a freak. His Neurologist calls him an Outlier. I felt like an Outsider, a Veteran, if you will, somewhat jaded by experience, careworn and still struggling with feelings of guilt, anger, resentment, grief. But I didn’t feel I wanted to express any of those feelings there. Our Seven years brings others hope but the reality is that the longer it goes on the harder it gets.

News from January

The new year began with a chest infection for Roch. Lucky we had our emergency supply of antibiotics on standby and once again, we nipped it in the bud before he could get really ill, although he was quite unwell for some days and it took a while for him to recover fully. I didn’t want to diagnose and dose him myself so as advised at the time the tablets were prescribed, I called our District Nursing Team. It was just after the New Year and they were very busy and told me to call the GP, but the line was busy and I couldn’t get through, so I called NHS 111. I spoke to a clinician who asked lots of questions and eventually advised me not to give him the antibiotics as Roch had said the cough was dry, although he had a slight temperature.

I didn’t argue with her although her advice to me at the end of the call was so patronising and demonstrated clearly that she did not have a clue about MND.

From my recollection: “What you’ll do now with the antibiotics you have is - you’ll give them back to your pharmacist and call your GP as and when you need an appointment.” You stupid woman, I thought. Now I don’t trust any of your advice. Later that night, when Roch tried to cough and (hurray!) managed to bring up some suspicious matter, I decided to give him the antibiotic. Next day I called the GP to let her know I had started him on antibiotics as he had a chest infection. She was fine with it. Some days later our lovely District Nurse Fiona advised that next time - if there’s a temperature and a cough, just do it. I will.

All the Consultants we have seen recently - Dr. Matthew Hind at the Brompton, Professor Al Chalabi at King’s College and Dr. Burman at King’s College - have asked if we have an emergency supply of antibiotics on hand. 

Parnika, Roch’s dietitian visited last week and brought a weighing contraption with her. This was fixed to the hoist and together we weighed him. Not sure how accurate it was, but he has certainly lost weight. He was 68.3kg in July and now he’s 63.3kg. This means more regular supplemental feeding and careful calorie counting. We’ve got to build him up. I think it’s been a gradual loss - he often has little appetite and stubbornly refuses the supplements. But he probably lost some weight when he had the chest infection. We are all busy stuffing him now.

January saw Team Roch grow and now, by George, I think we’ve got it! Marianna (who worked with us for a time when Jenny left) is back with us and will do two nights a week, Amelia will do her three days when I am at work and the wonderful Agnieszka has joined us - she and our good friend Carolyn will pick up the rest of the shifts. 
Both Roch and I were delighted when Carolyn offered to help. She saved my sanity before Christmas when she said she would come in for a day here and there to give me (and Amelia) a break as Amelia was trying very hard to be there for us - not just when I was at work, but on other days, too, so that I would have an opportunity to be 'off duty'.

Welcome to Carolyn!

It’s always lovely to see Carolyn at the door - her presence is so bright and cheerful and she has such a lovely sense of fun. As some of you know, Roch worked with Carolyn back in the day and it’s great for him to chat to her about work and catch up on news and the world of housing. 

A Little about Agnieszka

Agnieszka - the newest member of Team Roch

Amelia kept telling me the right person would come along but I was beginning to lose faith. Then, out of the blue we were contacted by Agnieszka, who through a series of personal circumstances, finds herself looking for a position where she can work flexible hours. She and Amelia worked together in the past and that's how she knew we were looking for someone. There was an immediate connection. Cheerful, gentle and with a great sense of humour, Agnieszka is a nurse, registered in Poland but working in the UK in the Caring profession; she lives near us, she drives - and she likes football! If she isn't an answer to prayer, I don't know what is.

So Amelia, you were right and the right person has come along. So I give thanks for Agnes. Folks, we may be able to settle into a life where we are a family again and Roch and I can enjoy just being together. 

An Interesting Meeting with The Professor (no, Roch not that Professor)

In fact we talked about being a family again at Roch’s appointment with Professor Al Chalabi last Thursday. He asked me if I had had recent respite and then reminded us that 2016 is the Year of the Carer. I told him how important it was for us to organise carers for Roch so that we could simply be a family again and Roch and I could enjoy our relationship as husband and wife. We agreed that the whole dynamic of the relationship changes when your partner becomes your carer and I mentioned something Kate said to me recently. She said she felt that it had been unfair (although nobody’s fault) to have told us to view Roch’s illness as terminal and make preparations for the end. Given the slow progression of the illness for Roch, over the past few years we have had to shift our focus from “Goodbye” and begin to live and plan for a future where Roch is still with us, but severely disabled. It’s a completely different ball game. Back at diagnosis they had no way of knowing that he would survive this long and MND is always fatal so it’s hard to see how their advice could have been different. 

Professor Al Chalabi paid us a beautiful compliment about the strength of our relationship and commended the way in which Roch and I had adapted to the changes throughout Roch’s illness. It meant a lot to us.

To update you in terms of Roch and the progress of the disease - Professor Al Chalabi says that Roch is now in the 2% of patients with MND who live beyond eight years. He counts the years from onset of symptoms. There is no reason to suppose that the progress of the disease will hasten - it’s likely that it will continue at the same pace - a gradual, slow decline. The good news, he added, is that given Roch’s longevity, he may well live to see a treatment emerge - a treatment which would not cure the disease but could very well halt its progress. Now folks don’t get too excited about this. He wasn’t promising anything and it’s important to understand that. Roch has mixed feelings about the possibility of any future treatment - the worse his condition, the less welcome a treatment would be which would keep him in a ‘state of decrepitude’ as he says himself. Professor Al Chalabi will make no more predictions - Roch is an outlier and we will just have to wait and see.

Roch also had an appointment with Dr. Rachel Burman, who is a Palliative Care Consultant, specialising in MND. In the past he has spoken to her of intrusive thoughts of death and how the end will be for him (Roch has given permission for me to speak of this here). Without being patronising, Dr. Burman encouraged Roch to think about his day to day life and consider whether he had enjoyed his day - yesterday, the day before - was he looking forward to anything? She suggested that he try to put away thoughts of the end (nobody knows when it will be) and concentrate on his life now. She prefaced her suggestion by saying that she recognised how annoying it might sound coming from someone who was not living with MND and inviting him to wheel forward and give her a punch if he felt annoyed by it! She also told him that she felt inspired by him and that she thought he was amazing and had grown as a person throughout his illness. 

You and I know this is true  - how good that the Consultants recognise it. 

As always, the faithful Gerry was chauffeur for the occasion. He makes an otherwise onerous expedition enjoyable. The journey flies by. This time we got to see the Queen’s Horse Guard at Hyde Park Corner. It was such an archaic sight and felt so weird to see the sun glinting on their silver helmets. I imagined them galloping towards ranks of infantrymen, enemies of the Crown, brandishing their swords. We agreed that the horses looked in better shape than any of us!

Christmas Charades

Present time - sharing memories

Christmas Table!

We had a good Christmas Day. Roch enjoyed his meal (that's seven Christmas meals since diagnosis, although now we feed him) and joined in a game of charades afterwards, to our great delight! This is not an easy thing to do, when you have to use one hand to lift the fingers of the other, offering spasticated clues as to the number of words or syllables involved. I think he would agree that the whole enterprise was pretty hilarious and he had us in stitches (mostly deliberately).

"Five Words!"

I failed to anticipate just how tiring Christmas preparations would be, combined with the demands of the caring role and less help for us over the holiday period so found myself in bed for much of Boxing Day (St. Stephen's Day to my Irish friends). Roch, Kate and Tom went to Griffin Park for the Brentford match. (Brentford drew to Brighton and Hove). Evening festivities recommenced when they got back and I once more rose to the occasion.

 Magnificent pudding provided as always by our Mauri

At Griffin Park

Christmas Day selfie!

I have resolved that next year I will have to let some things go and accept that I can't produce Christmas in all its perceived perfection unless we have a lot more help in terms of Care next year. I have got to admit that I cannot do it all - well, I can, with help from the kids, but then I collapse. I've come to realise that I carry on my own private Christmas charade each year. It's a world of make believe where I try to convince myself that if I can just reproduce our Maher Family Christmas...I can prove nothing much has changed for us. But it's an illusion. Everything has changed.
I made a promise to myself on Christmas morning when I woke up feeling more exhausted than I ever have before at Christmas: new family tradition will be Christmas Eve takeaway. So far, that's my only concession to MND but I suspect there will have to be more. It's a shame, because I love it all. I'm thinking the Christmas cookies have to stay...

Still, despite fatigue and the occasional tearful moment (many thanks to my wonderful children for all their help over Christmas and for providing the occasional shoulder), there were lots of happy moments together and new memories to treasure.

"It's a song!"