The Last Post: Free of the Monkey

It’s a long time since I added to the Blog. My heart just wasn’t in it and over the past year perhaps I was reluctant to share the intimacies of our life together, as it came to a close. I was ill over Christmas, and even then I think I knew it was the last Christmas together. His breathing had become much worse and he could not do without his ventilator for very long. He grew fatigued quickly and had lost the ability to lift his arms or move at all in bed. He had had enough and knew that his reliance on artificial non-invasive ventilation gave him a choice about when to bring things to an end. 

February 4th saw the climax of some months’ filming with Channel 4 for the coming series of programmes with Grayson Perry in which he sets out to explore Rites of Passage in Life. We were privileged to spend time filming with Grayson on a number of occasions for one of these programmes and Roch was grateful for the opportunity offered through participation in the programme to share his thoughts and feelings about facing his own death. 

On February 4th friends and family came together for a ceremony, led by Grayson, which celebrated Roch’s life and gave everyone close to him the chance to tell him how much he meant to them and let him know the impact he had had on their lives. It was a momentous day for us as a family and precious indeed are the memories for us now. The programmes will air in the autumn.

It was then that Roch spoke in public about his decision to request the withdrawal of ventilation. He wanted some control over the end of his life, he said. It was, he said, no reflection on the care he had received throughout his illness, from professionals, Carers and family alike. We had to respect his decision. 
On 23rd April, Kate, Tom and I went with him to the Hospice and spent two days and nights with him there. 
On 25th April, at his request, at 10:30am, ventilation was withdrawn and Kate, Tom and I were with him through every moment until the end. The end came, sooner than expected, at 12pm and was a peaceful passing. A shaft of sunlight shone directly on his face as he breathed his last. Moments later, the skies darkened and the rain came. 

I cannot praise the Hospice staff enough for the care Roch received and the support given to us all - at home, in the weeks preceding his admission and in the hospice at every single stage. At every meeting, up to the final moment before his ventilation was withdrawn, they asked him if it was still his wish. His answer at the very end: “Absolutely.”

The monkey took him from us so I guess you can say the monkey won, but in the end, Roch faced death on his own terms. I often longed for the monkey to leave Roch, and now he is free of it forever. Be careful what you wish for. 

“He is not here; but far away
    The noise of life begins again,
    And ghastly thro’ the drizzling rain
On the bald street breaks the blank day.”

                                               Alfred, Lord Tennyson

A Post for Mental Health Awareness Week

It's Time to Talk

Well, hello there. It’s been a long time, hasn’t it? Sorry we lost touch but I haven’t felt much like sharing. I’d like to be honest with you. Over the past few months it’s felt like a slog. If you’d like to hear about it, take a seat and share a cuppa with me. It’s Mental Health Awareness week and we’re all being encouraged to talk about how we’re feeling. Are you in the mood to listen? Or are you going to judge me, pity me or offer me platitudes? Because if so, maybe we shouldn’t do this.

I’ll give you time to decide and if you stick around, I’ll go on.

So - La la la la - here’s a picture of a pug in a swing. It’s pretty cute and maybe you’ll feel your visit has been worthwhile. Enjoy.

Pugtastic

 Have a good look and I won’t judge you for moving on now if you choose not to stick around to listen. No hard feelings. Thanks, just close the door gently behind you?

Ok, so, where was I? Ah yes, my feelings. Have I mentioned the Black Blog? It’s this little black book I keep by my bed and when I feel really bad I write in there. Some of the stuff in there is black. But hey, they say it’s good to get it down. Someday maybe I’ll show it to you, but not today. 

My problem with sharing my darker thoughts and feelings with you here, as a Carer - and as a Carer whose husband has his own paid carers/Personal Assistants for some of the time - is that I want you to think I am amazing. In fact, some of you have told me you think I’m amazing and I really don’t want to disappoint you. 
Some of you have told me you view me and Roch as this amazing love story of suffering and self sacrifice. I guess, in a way that’s true. We are both suffering but my self sacrifice is becoming more and more grudging and resentful. Wow! A Truth. Deep breath. 
Are you still with me? What are you thinking now?

Is it because it’s been almost eight years? I feel so tired literally all the time, despite the truly amazing efforts of Roch’s Personal Assistants. I feel worn down. There are days when it is difficult to get out of bed, when I stumble through the day and any extra task seems like too much. I frequently wonder if I am depressed. Sometimes I think I am, but then somehow I pull it out of the  bag, manage my work days and find myself at home again. I find sunglasses very useful. It's easy to pretend that you're fine and that everything's ok when people can't see your eyes. Easier to hide the anxiety. 

That’s the problem with this bloody disease. I was genuinely the devoted, caring and grief stricken wife for a long time. But nobody told me it was going to be like this. That I would feel exhausted and cheated and resentful and that there are days when I feel quite distant from him. It’s not his fault, it’s not my fault. He’s got his own coping strategies but they are not mine. 
Sorry, is this too much? Would you like me to stop now? Just a bit more, then, and I’ll let you go.

There are many positives in my life and I don’t need you to remind me about them, so please don’t. I’m aware of them but they’re not making a difference to me today. If someone asks me to make a ‘gratitude’ list I won’t answer for the consequences.

So back to coping strategies…he has his, I have to rediscover mine. 
How many times have I said I must go back to my writing? Why is this so difficult for me? When I say ‘go back’ I mean drag myself through the mire of my thoughts, disentangle, go deep and face the feelings. Produce something on that most terrifying of surfaces, the blank page. See, that does sound scary. I can’t just sit and write about what doesn’t matter. The words are lifeless on the page. Crippling boredom sets in.

“Write long and hard about what hurts.” Hemingway
Perhaps I should drink while writing.

And Joyce Carol Oates:
“I have forced myself to begin writing when I’ve been utterly exhausted, when I’ve felt my soul as thin as a playing card, when nothing has seemed worth enduring for another five minutes…and somehow the activity of writing changes everything.”
Ah how I can relate to this. Write, write, write. Well, I’m writing now, so that’s a start. 

Our lives have been hijacked. My life has been hijacked, but it doesn’t do to complain. People get nervous - I can see you look shocked and disappointed, shifting edgily in your seat, looking at your watch. Are you hoping I’ll stop and tell you a funny story? Sorry, I don’t have one for you today.

You may feel you have suggestions to make. If so, please don’t, not today.  I’ve asked you to listen, and you have. So thank you. That’s all I need from you at this time.
Remember, it’s Mental Health Awareness Week. Hey, you’ve done your bit.

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.