In New York

In New York

Sunday, 16 August 2015

Running on Empty

We are adjusting to more changes. Everyone is feeling the strain. As time goes on, and his illness progresses, Roch is becoming more helpless and dependent. It’s been six years and this disease is relentless. It affects everything, including our relationship and his relationship with the kids. It’s easy to see the tasks involved in his care as chores, added to my list of duties and responsibilities. In the evening if the kids are around, we divide the chores between us – who fills the dishwasher and tidies the kitchen and who gives Dad his bolus flush and night time meds and helps him to bed.  Roch sits patiently waiting. Nobody really wants to do any of it. It would be so much easier to leave everything (including the dishwasher) and just go to bed. Some people can do that. Just go to bed at the end of the evening. Sure, we can leave the dishwasher, but we can’t leave Roch.  So there are times when it all seems too much; times when it’s hard to go cheerfully about the myriad tasks involved in his care 24 hours a day. Sometimes it’s all I can do to get through them. At those times there is nothing left over to fuel a smile, a laugh. I can’t make light of it.  There are other times when we fly through the routine, joking together, having a laugh – so deep in conversation that I hardly notice the time going by until he is safely settled in bed. Fatigue plays a big part for me and of course, like every relationship, there are times when we are annoyed with each other and that makes things complicated.

A Man, his Wife and the Monkey

A good friend of mine remarked once, “It must be so difficult now – you can’t be cross with him anymore.”  Well, she was right and she was wrong.  I still feel cross with him sometimes, and we do still have arguments  - as every couple does – but she's right, it's not the same and it doesn't feel right. The balance of power has shifted and we are no longer equal participants. Even if I’m mad with him, I still have to look after him (with very bad grace) and if he’s mad with me I can see how tortured he feels, having to submit to my ministrations, wishing he could dispense with the necessity and do as he used to do during our rows of the past – walk away. So now, if there’s a row, neither of us can walk away from the other. He can’t because – well, he can’t walk. I can’t because I still have to make sure everything is done for him and he is cared for. Our rows never last long but it’s unrealistic to think they never happen. In two weeks we will have been married for 25 years. You can’t live with someone for that long and not have an argument now and then. But they are more likely to happen when I’m running on empty.

Recent Changes

The first major change happened a few weeks ago, with the advent of the hospital bed. We held out against it for a long time, but we have said goodbye to the old marital couch now and it is gone. He was dreading the hospital bed, but it’s working out well. It’s helping with the pressure sites (I won’t call them ‘sores’ as the skin hasn’t broken). It has a special mattress with a motor which emits a weird humming noise. It creates a kind of rippling, adjusting the surface of the mattress so that the pressure points change constantly. It’s on a low setting at the moment. The fact that we can adjust the bed to different positions is helpful when we’re getting him up and putting him to bed. The great thing is that he can adjust the bed positions himself and he can still use the bars on either side to turn himself. So that’s all good. But it’s still a hospital bed. Another line in the sand.

Change number two is the Feeding Regime. It’s getting more difficult for Roch to eat. He can swallow but he has to think about it and it’s so tiring for him. I don’t even mean that it’s tiring for him to feed himself. He can’t do that anymore. It’s tiring for him to chew his food. Sometimes it’s too much. He always has a dinner in the evening, but often during the day he can’t face lunch. We’re relying more and more on Fortisip and Calogen. So partly to plan ahead and partly because we need to make sure he’s getting enough calories, the time of the Pump has arrived.

I’ve been dreading it, dreading it. Anyway, a couple of weeks ago the dietitian came and helped me set it up. We had discussed it at a meeting in advance and I was sure I’d said we didn’t need the high fibre feed, but they delivered four boxes of it. So we started him on 50ml per hour for 5 hours. I was nervously checking the level of liquid as it went down. We weren’t even sure it was going in properly that first day. But hey, it was because that night he had an upset tummy and diarrhoea. So we stopped the feeding and I asked the dietitian to change the type of feed. I was kicking myself – I knew I shouldn’t have been persuaded. I must learn to trust myself more. I know him. It took us a while to get over that whole episode and considering how long we’ve worked to build up his confidence for outings – with the whole Qufora thing and managing the bowel movements – well that was some setback.

Anyway, the new feed (I feel like I’m talking about a farm animal here) arrived and we started again yesterday. I think I’ve got the hang of it now and there’s been no upset tummy as yet. The idea is to get his system used to it gradually so that he can have the pump feed overnight, thus freeing him up for the day, with more energy and able to eat whatever he likes whenever he feels like it – no pressure to eat because he knows he must. But it’s another line in the sand. I think I’ve been feeling pretty shit about it really. Bolus feeds were one thing but I got used to it. Second nature now. But there’s something for me that’s psychologically very challenging about the pump feeding. I am not finding this easy and I’m sure he isn’t either.

I am hoping it will help with his energy levels. At the moment he sleeps through most mornings, and yesterday this meant the pump feed started late in the day. He ended up having his dinner too late. So today we are changing things round. A late lunch (plenty of Irish sausages, egg, waffles and cherry tomatoes from our own garden), then starting the pump feed later on, when he’s happy to watch Super Sunday football. We’ll see how that goes.

Feeding Roch is becoming a full time job in itself.

I was hoping we could arrange respite stay at the Hospice, but they don’t have a space for respite until late November. That seems too near Christmas to me and I don’t want him there in winter, and especially not for his birthday. So we will have to look at something else. Amelia has offered to stay so that I can get away. Bless her, she sees that I need a break.

The Hospice did offer me some complimentary therapies though, and I had a really lovely relaxing massage last week, courtesy of Sharon. That helped, and there are more to come. Speaking to my counsellor always helps too and I saw her last week. I also did something I’ve been meaning to do for ages. I bought myself a proper desk, for my writing. Amelia and I put it together the other day. I am rapidly coming to rely rather heavily on that woman…

The Ripple Effect

When I worked for Victim Support, we talked about ‘the Ripple Effect’ of crime. The victim is directly affected, but like a stone cast into the water, causing ripples outwards, the effects of the crime ripple outwards, affecting not just the victim, but their family, friends, work colleagues…

The Monkey causes a ripple effect, too. It sucks the life from the person trying to live with it, but over time it affects everyone close to him/her too. I watch families newly affected by MND and their determination to fight it, to raise funds and awareness. I admire them so much but I wonder how long it will be before the Monkey begins to take its toll on them, too. Maybe I’m just an old MND cynic. Maybe soon a cure will be found and then we will meet the first family to beat the Monkey.

Won’t that be something?

In other News, I received a present the other day. My neighbour came back from her holiday in Spain. She had spread the word about my Blog to some friends and I guess they must have liked it, because they gave her something to bring back for me. Now, you know how I hate monkeys, but these three have pride of place near my new writing desk. 

Many thanks to my unknown benefactors…

Monday, 3 August 2015

The Power of Love

My sister, Maura has a theory. She shared it with me recently and it makes sense. She believes in a force she calls ‘The Spoiler'. Destroyer of Good. Bringer of misery and decay. Not Death, which comes in the Natural Order of Things, but the epitome of Evil, which seeks out the very Best in order to despoil. Some know the Spoiler as the Devil. I don’t believe in the Devil, but I agree with my sister and I, too believe that there is a force for Evil in the world. Let’s call it The Spoiler.

I recently returned from Dublin, where I attended the funeral of an old and dear friend. He and Roch had been good friends since student days. I asked myself as others did who knew both Fachtna and Roch – why them? Why both of them? But from there another question is raised for me  – why were they both afflicted with terminal diseases which eerily targeted strong personality traits, particular to each? One might say defining characteristics.

Take our friend, Fachtna. Fachtna, of the ‘fierce intellect’. A gentle man with a towering intelligence. A man who could happily relax reading a book on quantum physics. So what does the Spoiler do? It attacks his brain. Fachtna died of a brain tumour, which slowly consumed and destroyed him. Is there some twisted ironic sense of humour at work here?  Destroyer of Good.

I view the Monkey as an Agent of the Spoiler. Anyone who knew Roch before his illness will remember that restless energy, the way he could not keep still for one minute. Always on the move, spontaneous and energised. Even at rest, a finger tapped on the table, a foot jigged up and down. He was always the one to jump up and go out – to the gym, to the shops, to meet friends. So what does the Spoiler do? It attacks Roch’s neurons, slowly stripping him of his physical strength and capabilities. Bringer of Misery and Decay.

And yet, although we cannot cheat Death, we may vanquish The Spoiler and his agents. His ultimate goal is to crush our spirit, to demean and de-humanise. Maura and I believe that the antidote is Love, the power of which the Spoiler will never understand. And so it was for Fachtna, surrounded throughout his illness by the love and courage of his wife Joyce and their three children. 

Roch, too has foiled the Spoiler and his agent. He says “If anyone had told me, six years ago, that I would someday be content to sit still all day, I would never have believed them.”He has adjusted to each cruel loss. Confined to his wheelchair he says the world is at his fingertips; I-Phone, I-Pad, Fire Tablet. One foot still moves, a sign of a restless energy contained. The Monkey will take away the power in his hands and fingers and the next level of technology will be reached. I know he will master it with his customary determination and humour (there may be some swearing along the way). The Monkey has not conquered his spirit.

A team of professionals stand at the ready to assist. But perhaps more importantly, he is surrounded by the love of his family and friends, all determined to soften each blow as it falls, to stand with him in defiance of The Spoiler.

No, none of us can cheat Death, but like Joyce and Fachtna, we can create something beautiful from the twisted cruelty that would see the Bright and Beautiful brought low and have us watch in helpless despair. We can surround the afflicted with the protection of love and friendship, shielding them from the humiliations and indignities their illnesses visit upon them, learning ourselves from their fortitude.With courage and love we too can vanquish the Spoiler.

RIP Fachtna Mylod (1963-2015) 


Sunday, 28 June 2015

Dorset Diary or How a Fall Broke the Spell

Back from Dorset

I can’t believe we are back from Dorset already. It doesn’t seem like a week has passed. Ellwood Cottages did not disappoint and it’s hard to describe what a calm and relaxing place it is. The kids forgot to bring raincoats but the weather was so good that they didn’t need them. It was all going so well…let me share some diary entries with you:

June 20th

So here we are again at Ellwood Cottages. Arrived safely in beautiful hot sunny weather. Bit of a   delay getting down as queuing traffic at Stonehenge. Listening at this moment to an absolute explosion of birdsong.  John and Anne as lovely and helpful as last time, the cottage is absolutely spotless – such a pleasure. Crisp, clean white cotton sheets and fresh towels. The hoist, although a standing hoist, is not exactly like our own. Perhaps we haven’t quite got the sling right? Seemed better going to bed so looks like we have it right. So far haven’t forgotten anything vital. All ventilator parts present and correct. Lovely first evening sitting out in the little rose garden watching the birds with Roch –swallows, sparrows, finches, crows and jackdaws  – as the horses grazed beyond the fence against a background of rolling green hills. The perfect setting for Roch’s beer and cigars!

June 21st

Longest day of the year. Yesterday was overcast but muggy and warm. We made the much anticipated return visit to the Udder Farm Shop – such a success last trip and no different this time round. Delicious food in the restaurant served by lovely people and then shopped for fresh organic local produce. Kids frolicked in the playground for a while. Getting used to driving on the little twisty roads again. Felt very tired in the evening so had a rest and then played Cluedo with the kids. Did R feel excluded? Hard to know – he said he was okay reading. Kate even came up with a plan for him to play using his I-pad as he can’t hold the cards but he gave it a miss. A couple of episodes of ‘Orange is the New Black’ – something of a Dorset tradition for us.  Still getting used to the hoist but no mishaps and all settling down here. Can’t get him out of bed by myself and he can’t turn in bed by himself. Last night he asked me to turn him at 2:45am and I had to get Tom to help. Luckily those two had only just gone to bed and were still awake.

4:30pm Father’s Day today. 
Father's Day 2015

Cards and Game of Thrones tee-shirt from the kids.
Loving the rose garden.
Noticed nesting boxes today – one has a sparrow family inside. There is one rose which smells of lemon. Exquisite. 
A most delicate lemony scent

 Swim today with Kate. 30 minutes in the pool, practising our strokes. Really loving the exercise. She looks like a mermaid in the water –all that lovely long red hair. What a beauty our girl is.
This is such a restful place.  Note: Roch does seem more frail. Only when he is ensconced in the recliner or in his wheelchair does he seem confident and relaxed.  Sitting on the bed this morning he fell sideways. He was still in the sling but when I detached the sling to move the hoist, to put on his tee shirt (The House that Jack built) he keeled over and I had to call Tom to help me set him upright again.
I am developing a great love of birds and must clean out our bird feeders and buy a birdbath when we get home.

June 25th

Well, it’s happened. I guess we’ve been pretty lucky that we haven’t had to call for an ambulance before now. Last night we did. He fell and we followed the accepted professional advice and called emergency services. Unfortunately it happened at about 12:45am which somehow made it that much scarier. He had been, as I thought, secure in the hoist. I was steering it into the bedroom, a journey of a few short steps from the recliner. He was in the doorway when his knees gave way and before my horror-struck gaze, he slipped out of the sling and fell backwards onto the floor, his head hitting the (thankfully carpeted) floor with a thud. The kids came running from different directions. He lay still for a time to recover and assess any damage as their poor shocked faces looked on. Options were discussed. There was no bleeding and he hadn’t broken anything. He didn’t want an ambulance called and we were all reluctant to disturb John and Anne. Eventually we compromised. 

We had to call for an ambulance because we would never have been able to get him up ourselves, and we had to make sure there was no injury we couldn’t see; but after a while, at his request we moved him to a sitting position, leaning up against one of the seating cushions from the sofa. Tom sat beside him on the floor, alert to keep him from slipping sideways. Kate and I prepared to venture into the darkness in an attempt to find a phone signal. 

We made for the very back of the garden. I could feel the coolness of the damp grass through my sandals as we moved through the pitch black, the only light coming from the little emergency lantern I carried. Kate called John and Anne to let them know what was happening and I called 999. My heart sank as my calls failed a number of times but eventually my call was answered. Back to the cottage and on the way I saw that there were lights on at the main house. I felt bad that we had disturbed them. Sure enough, they emerged into the courtyard and I hurried over to explain. As we talked, the sound of laughter carried across from the open window of the cottage. Tom was distracting Roch with Youtube videos.

Kate and I had opened the gate to the courtyard and she was waiting there with the lantern. John, Anne and I joined her there to keep an eye out for the ambulance.  It was a balmy night and quite dry. We waited for 30-40 minutes under a starry sky and eventually we saw the lights of the ambulance.  John and Anne went back to the house and we brought the ambulance crew to the cottage. Liz and Jessica had come from Dorchester and they managed to get Roch sitting on the side of the bed, using the hoist. Liz explained that they couldn’t put Roch in the sling and that we would have to do that in case he fell again, as if he did, it would technically be their fault. So Tom put the sling on him. Liz examined him while the children looked on and I answered Jessica’s questions as she filled in some paperwork. Roch’s head and backside were sore and he was shaken but otherwise okay. They stayed while we settled Roch to bed. Kate was dead on her feet as she’d been up that morning at 6am so she went off to bed too, but Tom wasn’t ready for sleep so we stayed up watching RuPaul's Drag Race – don’t even ask! We 'Sashayed Away' at 3.3am but I don’t think I got to sleep before 4 and woke at 8. I think we are all a bit fragile today.

It had been such a lovely day, too; a swim in the morning for me and the usual coffee and cigars for Roch, sitting in the sunshine. After lunch we drove to Sherborne, a very pretty town, and went to see Sherborne New Castle, once the home of Sir Walter Raleigh. The guides were anxious to make sure we all got the most we could out of the visit. We had arrived late but they gave us a whistle stop tour. We saw the pipe Sir Walter reputedly smoked on the scaffold and Tom and I had a quick gallop round the shop, while Roch was treated to a slide show (access only on the ground floor so the slide show brings the disabled visitor through a tour of the upper rooms). Then we trotted round part of the grounds and garden (designed by Capability Brown) and back into Sherborne for a pint for Roch. 

Yes, it was all going so well before the Fall.  We are restricting transfers to short distances only – no wheeling him around in the hoist. Two people on the job and on high alert during transfers. Glancing through my diary entries, I think I am guilty of complacency. His condition has seemed relatively stable for so long and we have had no disasters. I was clearly uneasy about the hoist from Day One but I managed to convince myself that it would be ok.
Roch, as always, takes a philosophical view. It could have been worse, he says. He wasn’t hurt and we all worked together as a team. That man can see the positives in anything. That’s why I need him.

Home now and facing a week of appointments. He had trouble turning last night but thankfully no problems with the hoist here. We are being extra vigilant. I have emailed the OT as I think we may have to think again about transfers. His legs are weaker – the right leg may be giving up. 

It’s hard on the kids.

Will we go back to Ellwood Cottages? We hope so. 

Wednesday, 17 June 2015

The Will to Write

 “Get it down. Take chances. It may be bad, but it’s the only way you can do anything really good-  William Faulkner

 I blogged the other day about how my mind-set has changed, how I no longer regard Roch as a dying man. When I began this blog on 24th  March 2010 I wrote:

“Ok so now I've started. I'm a blogger! I've decided to blog about my life, specifically since my husband was diagnosed with MND last June. For those of you who don't know, MND stands for Motor Neurone Disease. It's a progressive degenerative neurological condition (what a mouthful) and at present he is 'living with it' but we all know it'll get him in the end. He calls it 'The monkey on his back'. If anyone ever asks me 'Which living person do you most admire?' I will tell them 'My husband, Roch.' He knows this. I've told him. He is the bravest person I know.”

Well, he’s still the bravest person I know, so that hasn’t changed, and it’s going to get him in the end, all right. But that was six years ago and we went into this thing thinking we had very little time left together. You know what? We were wrong. I don’t want to get complacent but I realise that I need to stop telling myself that my stuff can wait. In my head there’s a date, a time I call ‘l-a-R’ time. That’s ‘life after Roch’ time. I told myself that when the worst happened, I would be able to concentrate on my writing, that it would be my consolation, something all my own to hang onto for dear life. Now I realise that I can’t put it off and use Roch’s illness as an excuse any more. I need to get on with it, rejoice that he is still here, very much alive and accept that I must weave my writing through and around our life with MND with purpose and intent.  After all, as my mother once told me, “Cheer up, you might die before him, and then you wouldn’t have to worry about it.” Ah,  there’s nothing like a mother’s comfort.

The Will to Write

There are days when I wake early and Roch doesn’t need me yet. I lie in bed and allow inertia to take over. I feel exhausted but sometimes I do get up early. Sometimes on those days I stare at the blank page, bleary eyed and with an aching head. The pages of my notebook are full of self-pitying entries, negative thoughts where I berate myself, interspersed with attempts at self-encouragement:

March 24th 2015 Five years from First post

"Feeling low today. I never dream about flying anymore. I feel like I have little direction, just emptiness and sadness. I feel like I could be more to him. The worse he gets, the more distant I feel from him. I wish I could get down to more writing. Wishing isn’t doing, I guess. Same old, same old. What changes do people see in him? Neck brace, struggling for breath at times when speaking. I feel like I don’t help when he lacks motivation. I’m busy, busy, busy all the time. I need to sit quietly with him more. Ah well, at least I can say I bring him to football. And meanwhile where is my life going?"

May 13th 2015

"Desperate to write something good, something successful. I long for those sessions of writing clarity, when the words flow and you know what you’re doing! I cast around for ideas. I spend more time reading about writing than I do writing. I keep telling myself to stick to a schedule. Do a few hours every morning. In the meantime I write horrendous poetry (but is it horrendous? Is it?) and FAFF ABOUT!Fact: I have had SUCCESSES!!Fact: People like my writing!Fact: Spending too much time on twitter and Facebook.Note to self: Put phone away when writing." 

June 4th 2015

"No writing, that’s right, begin with a negative. Hospice Nurse came today. I miss D. Felt under pressure to respond as the dutiful wife (Inside I’m screaming). So, not possible to be completely honest. Note to self: explore this with Monika. Where is he to die? Hospice or Home? His use of the word “burden”. Do I make him feel like a burden? Shifting the mind-set…I am very much in my own version of MND world today."

Here’s a good one:

21st January 2015

"I’m excited that after my entry here yesterday, I opened up the laptop and wrote a story for a competition. It feels good. It made me cry (how very self-indulgent of me). It was C---- at the door which was just as well, as he wouldn’t have noticed a thing! I sent him away as Roch was still sleeping. My story is about a quilt. It has elements of truth all wrapped up in some pretty strong fiction. I’m very happy with it.”

That story didn’t get anywhere in that competition, so I’ve recently entered it into another. It would be lovely if it was longlisted, shortlisted – won! But even if it doesn’t appear on a list anywhere, I love it and I loved writing it.I ask myself the question: What do I need to be happier in this life? I know the answer to my question. Set time aside to write.

“Folks are usually about as happy as they make their minds up to be.” - Abraham Lincoln

I do find the 'twittersphere' great for picking up motivational quotes. But time to put the phone away now...

Monday, 15 June 2015

Six years since diagnosis: Tennyson, Assisted Dying and Living Life

Six Years of MND

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. It means living in the moment not just as a couple, but for me as an individual, too and not postponing life until some future uncertain l-a-r* date. But this is for a separate blogpost.

A Young Man's Fancy

I think Roch’s feelings are different. Alfred, Lord Tennyson once wrote:“In the Spring, a young man’s fancy lightly turns to thoughts of love.”This quote shot into my mind as I began this post, but I amend it here to match our circumstances:

“In the Spring, a brave man’s fancy grimly turns to thoughts of death.” 

Doesn’t have the same ring to it, does it? And yet, it’s true. I have no doubt that thoughts of death are often in his mind, but June is a special time for us. This June especially, death is very much in our thoughts, as an old and dear friend is dying, not from MND but from cancer. Roch feels it acutely. Six years ago he expected to be dead long before anyone else of our acquaintance. Once again, I know his thoughts are occupied with questions about how his own end will come. What form will it take? How ‘decrepit’ will be be? (His word, not mine.) The internet is a wonderful thing and yet it can also be a frightening thing. We read about other men and women living with MND as they and their loved ones document their experience. Some of what we read scares us. He dreads a long and lingering death, immobile, unable to communicate freely. He often speaks of suffocating, choking etc.  His doctors cannot tell him how the end will be for him, because they don’t know. They can’t answer his question because everyone with MND is different. Of course not everyone with MND will die a lingering and distressing death, but the best I can say to him when we read of someone else’s struggle and misery, as they battle against distressing symptoms at the end of life is:

“It may not be like that for you.” It’s little comfort. How do we know?

So Roch ponders the manner of his death and worries, feeling that he has no control and not enough information.  Aware that Assisted Dying is illegal in the UK, Roch feels his options are limited. He would like to choose the manner and time of his death but presently feels that to exercise control he may decide to refuse food and drink. What would the physical symptoms be? What would the level of pain/discomfort be? If he didn’t accept nutrition, but was kept hydrated – how long then before the end? 

The hospice nurse is unable to answer these questions and as the law currently stands, we can’t expect that he will. He really cannot discuss issues around end of life in any context which might be construed, however tenuously, with Assisted Dying and so tries valiantly instead to offer reassurance to Roch; that his death is not imminent, that the palliative care at the hospice is excellent, that his family are more than willing to continue to care for him as long as it takes. We know these things, Roch knows these things, but knowing them doesn’t help him.  Roch remains in a state of constant anxiety and will continue to wake at night on occasion, with ‘the horrors’ as he describes it, facing an uncertainty about his end with no control over the outcome. He doesn’t want to die. We don’t want him to die, but if he is to enjoy the rest of his life at all, he needs to have control over the end of it.

Assisted Dying Legislation in the House of Commons

So earlier this month we were delighted to learn that MPs are to debate Assisted Dying legislation on 11th September. Labour MP Rob Marris, who is introducing the bill, said,

“Alongside the vast majority of the public, I am in favour of terminally ill people who are of sound mind having choice at the end of life. It is a choice that I would want for myself and I do not think we should be denying this to people who are facing imminent death.”

This will be an opportunity for Members of Parliament to debate the best law which will not only give dying people choice but also protect the vulnerable.

So here we are, on the eve of 16th June, six years since diagnosis and we are still making plans and trying to enjoy as much as we can together, as a couple and as a family. Wouldn’t it be nice if Roch could relax and make the most of what’s left to him, untroubled by thoughts of his death, knowing he would have some control at the end? 82% of the public would agree. Do you?


Monday, 27 April 2015

Is Everybody Happy? Then let Everybody Sing.

So a couple of people have told me that they worry when there are no updates on the blog. I’m sorry if you have been feeling worried by my silence. You know what it’s like when you’re feeling low or sad – it’s hard to motivate yourself to do anything. Sometimes all you can manage are the essentials and believe me, there are plenty of essentials to manage. If anything major was happening, please be assured that I would let you know – even a short post to update you all.

So, yes, I have been feeling low and sad lately and I haven’t felt like coming to these pages because I haven’t wanted to share those feelings and not to mention it would have felt dishonest. But I’ve decided now to tell you that I’m feeling sadder these days, but that’s okay. I don’t expect any of you to do anything about it – there isn’t anything you can do, after all. It’s enough for me to tell you, and get it out. All I want you to do is read this. Really.

Six years in June. It feels like a long time and lately I’ve been feeling tired. Maybe it’s taking its toll now and yet I can’t afford to be tired at this point, there’s a way to go yet. I’ve been feeling anxious. Every day I wake up and ask myself the question “Will I be able to manage today?” All I can do is get up and try. There hasn’t been a day yet when I haven’t managed but there have been plenty of days when I’ve felt exceptionally sad.  I know there are those of you out there who are living through a lot worse and I know there is worse to come for us. But sometimes I can’t help thinking that it’s pretty bad, after all.  It helps to acknowledge that. Sometimes positivity eludes me.

Don’t get me wrong, I have a lot to be thankful for and good things have happened lately – I’ll get to those in a minute – but first let’s just talk about what’s not so good. I want to be honest. Well, it’s just relentless, as every Carer of a person living with MND knows. It’s definitely more tiring now and physically demanding. The trusty hoist is in constant use. It’s a great piece of kit and yet I deplore the necessity for it. Up and down and swing about…

We said goodbye to ‘Old Rollie’ last week. I well remember recording the arrival of the dreaded rollator, years back. (See blog post 26 March 2010). Tom’s look of horror when he clapped eyes on it, Roch moving painfully along the street, stopping to rest every now and then. It became his most trusted companion and gave him some limited independence in the house for a long time – but the time of the rollator is over, the time of the wheelchair has come. No more walking now, or even standing, without the hoist.
Roch and Rollie in better days
The hands are becoming a problem. For the first time ever, the right thumb refuses to budge. No movement at all. The little finger on that hand has also given up and the fingers on both hands are slow, clumsy, the hands claw-like.  It’s difficult now for him to text or type.

His breathing seems improved since March, however. Perhaps he had some kind of undetected virus then, as he doesn’t seem to be struggling as much. We haven’t been in to the Royal Brompton – all projected dates for the sleep study have been cancelled, as no high dependency beds have been available. Today we proactively cancelled as his tummy hasn’t been well. But we’re not desperate to get in, especially since his breathing seems improved since March. Listen, a funny thing happened when I called the hospital this morning. I explained that he wasn’t feeling too good and might have a ‘bug’. They agreed that it would be inadvisable for him to go in. “I know what it’s like,” the lady said, “When you’re feeling ill the last place you want to be is in hospital.” We had a laugh over that one. To be fair to the woman, I know exactly what she means.

I've been feeling under the weather lately, too – lots of headaches and aches and pains. I guess much of it is stress related and I haven’t had the motivation to do much about it. It all wears you down and I guess it’s not much fun for Roch when his main Carer is doleful and unwell. It sometimes feels like a heavy responsibility, constant cheerfulness. As my mother used to say to us children before my father got home from work: “Is everybody happy? Then let everybody sing!”  This was the signal for us to stop complaining and give the man the illusion that all was well with his family, at least until after he had his dinner. Then we could line up with our little problems and troubles. He could take it better on a full stomach.

Some days are better than others and I had a great day last Friday. I will say, I love my job and I love the people I work with (you know who you are). Sometimes I go in there and I do wonder, “Will I be up to it today?” You know what? I always am. Last Friday I had my annual appraisal and I was overwhelmed by all the positive feedback.  I mention it because it reminded me of how lucky I am to be doing a job I love, a job I know I do well. I get tremendous support there, from colleagues and from management. Missing People, I salute you.

I was also thrilled to find out on Friday that the Chawton House anthology of short stories will be published in August and I will be attending the launch in September! The book will be called ‘Beguiling Miss Bennett’ and my story ‘Gorgeous George’ will be in there.  Yay!  I recently received a draft agreement from the publishers and I suspect that I will be signing my life away but hey who cares! Proper published at last. Autographs later folks…

A piece on ‘Wheelchair Candy’ found its way into the Spring edition of ‘Thumbprint’ (The magazine of the Motor Neurone Disease Association).

Fame at last!

Those of you on facebook will have seen my post. I feel very privileged to be in the same edition as the wonderful Maria Moo Watton, who sadly passed away recently. Her beautiful smile and tireless optimism will not soon be forgotten. The pages are packed with  MND champions, like Sarah Ezekiel, Liam Dwyer, Greg Broadhurst, Tony Bray, Sarah Lannie, Sandra Smith and so I am in very good company…HRH The Princess Royal also gets a mention in there somewhere…


This is what will save me. My job and my writing.

It’s not all miserable. We can still have a laugh. We have lovely evenings here, with Kate and with our Tom when he’s home. I have great friends and neighbours, a lovely sister and supportive brother, an excellent Counsellor and support from our local branch of the MND Association. Roch’s family are all there for me, I know it. I don’t forget these things, it’s just sometimes hard to beat down the sadness/anger/fear and remember the good things. See how I feel the need to reassure you? It’s because all I want you to do is read this. Really, that’s all I need from you right now. Thanks.

Wednesday, 25 March 2015

NHS Choices filming

NHS Choices Filming

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

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

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

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

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

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

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

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

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