Back to the Brompton. A Christmas Ordeal.

On Tuesday 22nd December we had an appointment at the Respiratory Clinic at the Royal Brompton. In the months coming up to the date, it was tempting to rearrange as the thought of travelling there and back and being stuck in that hospital corridor all afternoon two days before Christmas was pretty dispiriting. But back in November the local Respiratory Nursing team advised me not to postpone. His cough reflex, they told me, is so weak now that we need to talk about cough assist machines. This caused the usual skipped heartbeat for me - which I notice is what happens when I recognise an MND landmark moment.

So we didn't postpone. I arranged time off work (once again, thanks to Paul and Amy) and arranged for hospital transport on the day. I alerted our friend and neighbour Michelle to the imminent arrival of an ambulance (to allay the fears its arrival would inevitably cause amongst concerned neighbours) and made the necessary preparations. The ambulance arrived early and off we went. They had left plenty of leeway in case of traffic, which meant we arrived 45 minutes ahead of our appointment time. And so the waiting commenced...

We have plenty of time to observe. There is tinsel everywhere and a rather nice Christmas tree at Outpatients, downstairs. Several female staff members sport jolly Christmas earrings.

The appointment is for 13:00 and the usual routine is followed today. First, but not until 13:30, Roch is called for the FVC (Forced Vital Capacity) test, where his lung capacity is measured by blowing into a tube ("Take a deep breath, now blow - keep going, keep going, keep going..."Lung capacity is measured on a chart, which is added to his file. Then we return to the corridor to wait for the blood test. Eventually he is called the the Blood Room (in my head I call it 'The Bloody Chamber' a la Angela Carter). As described in previous posts here, the patients are given a choice - wrist or ear? Roch usually chooses wrist as this tends to bleed less, although it's more painful. However, there are fewer nurses with the skill to extract from the wrist and we hadn't spotted the usual skilful individual so he chose ear. Mistake. It still hadn't stopped bleeding when I was putting him to bed that night.

Back in the corridor, ear sporting an enormous wad of cotton wool, held in place by a cartoonishly large clip in startlingly bright blue, we wait again, senses on the alert for any sign of an elusive Consultant. There are always two at the Clinic. We hope to see Professor Polkey but today there is no sign of his tall, genial presence. Instead we see the female Consultant we saw last visit and my eyes immediately meet Roch's in a mutual "Oh no!" We do not want to have come all this way, waited all this time and be met with well meant platitudes. Might as well have stayed away and wrapped some presents. More useful.

Then I spot a vaguely familiar figure striding past. I don't remember his name but I know we have met him before. There is something instantly likeable about the way he interacts with a patient who stops and addresses him in the corridor. His manner is friendly and respectful and he gives her all his attention, although given the growing line of waiting patients, he must be keen to start his clinic.

So now we wait and wonder which Consultant it will be who emerges to call Roch's name? We see both conversing at the end of the corridor and they disappear together into one of the consulting rooms, presumably to divide up the afternoon list.

The female Consultant is out first and to our relief, she calls a different name. As the patient and his companion follow her down the corridor we hear her explain loudly that she is one of the Consultants this afternoon and that she often takes this Clinic. Do  I imagine I see their shoulders droop in disappointment? The door closes behind them.

Next the gentleman I spotted earlier emerges and calls Roch's name. Relieved, I pick up the respirator bag and follow Roch as he drives the wheelchair down the corridor.

This is Dr. Matthew Hind and I am right, we met him when Roch had the PEG fitted, back in February 2014. Dr. Hind appears to remember Roch, too. This is a good start. After a preliminary chat, he gives us the test results, which are extraordinarily good. Blood gases are excellent and FVC is unchanged since last year. What? That can't be right. A whole year and no change? It means his respiratory function hasn't disimproved at all. Dr. Hind is surprised himself, but there is no doubt. He tells us that he has no explanation for this. Roch is unusual. This is not the way the disease usually progresses and he cautions Roch against advising in online forums based on his experience. Roch is aware of this, however. Roch, as usual, describes himself as a Freak. Dr. Hind smiles but does not agree.

Throughout the consultation Dr. Hind's manner is energetic, interested and engaged. He is careful to include me at all times. He has clearly read through Roch's file and his attention is fully focused on Roch, who he watches carefully.

I draw his attention to Roch's cough reflex and he agrees that this is weak. When I enquire about cough assist machines he asks if we have ever been shown how to use the ventilator as a cough assist? No? Well, then, let's get someone up to demonstrate that now, shall we? Immediately he picks up the phone and Adam is asked to come up from Victoria Ward to carry out the demonstration. We chat for a few minutes and as there is no sign of Adam, I suggest that we return to the corridor to wait as I am aware that there is a long list for the afternoon. Dr. Hind simply says "Would you? That would be great." But I note that the suggestion didn't come from him. We say our goodbyes and return to the corridor to wait for Adam from Victoria Ward. Thank goodness I brought the ventilator, I think.

At this point it's about 15:00 and I am starving. Roch says he's okay but he's only had a Fortisip for breakfast so I doubt this. I ask the nurse from the Bloody Chamber to check the ear and she removes the blue clip and cotton wool. As it's still bleeding steadily she puts two plasters on. Roch urges me to alert Hospital Transport for the trip home and I do this reluctantly as I'm afraid they will come to pick us up before we are done with Adam. Ha! I need not have worried about that.

Adam arrives within fifteen minutes (we have met Adam before, he supports Shrewsbury - football banter ensues) and we follow him down to Victoria Ward, where he explains that the ventilator aids by giving Roch more air (he holds it in) which then gives more strength to his cough. He shows me how to use the ventilator for this purpose and guides Roch through the breaths. He also shows Roch how to breathe in, close his mouth and sniff twice through his nose to build up enough air to fuel a stronger cough, without using the ventilator. It works. Let's hope it works when it matters. Both Dr. Hind and Adam think that at present, Roch doesn't need an actual Cough Assist machine. We are relieved as it means one less piece of equipment for the present.

Adam advises us to go straight to the Hospital Transport waiting area on the ground floor and we get there just before 16:00. At this point I am 'wall falling' with hunger (I imagine that means the stomach walls are actually on the point of collapsing inwards and sticking together. That is certainly what it feels like.) But I approach the rather cross gentleman on the phone and wait hopefully.

"Benfleet (?) I don't care where they are. Just get them back here NOW. What are they playing at?" Then he slams down the phone. I presume he is the Person In Charge. I give him Roch's name and he tells me he's waiting for the Crew to get back.

"He's down for collecting at five," he tells me with a glare that says 'Don't argue with me, love.' In my head I add the inappropriate endearment - he looks the type. He needn't have worried as I am so weak from hunger I would be incapable of forming another sentence. Any strength to resist has evaporated. Perhaps this is why they arrange lunchtime appointments. Mental note - next time bring food.

Hoping very much that Roch hasn't overheard this exchange, I return to him to tell him we may have to wait a while. I can tell by his face, which gets that set, angry look, that he is not pleased. I don't blame him. I ask if he wants a coffee or anything to eat. He refuses so I go in search of sustenance for myself, vaguely remembering that on a previous occasion, the small coffee dock was closed when I arrived on a similar errand. Happily, today the smiley lady is there and I grab a packet of crisps, a twix bar (no surprises there) and a hot tea. Why is it that hospital shops only seem to provide unhealthy food? However, I am not complaining and return to the dark alcove that is the Hospital Transport waiting area to devour my treats.

Another couple wait there, he is in a wheelchair, she sits with her head resting wearily on her hand.Having eaten something, I am sufficiently restored to take notice. She asks where I got my drink and I tell her although I fear that by the time she gets there, Smiley Lady will have closed up shop. Moments later she returns, empty handed. I smile in sympathy and a conversation ensues. Her husband tells me that he has MND and I share the fact that Roch also has MND. At this point I can see Roch is growing very impatient and is in no mood to converse with strangers. I don't blame him one bit - in fact the area is not conducive to his repositioning the wheelchair for conversation. I am happy to be distracted while I wait and the couple are very interesting. Out of the corner of my eye I see Roch manoeuvre his wheelchair so that he can approach the desk to complain. The Person In Charge having left, he argues with someone less belligerent in manner but equally unhelpful. I am even happier now that I am engaged elsewhere, although I guess being stuck in that chair since 11:30 this morning with no food and having to wait around constantly cannot be easy.

I don't think I can share all that couple told me here, as it wouldn't be right.  But to my amusement, they too say they had noticed the Lady Consultant and their hearts sank as last time they saw her -"All she did was blab, blab, blab," the woman confides. Just as with us. Sadly, the news they had been given was not as good as the news we had received. My heart sinks for them but they have  already agreed to seek a second opinion. They have not been in touch with the MND Association although like Roch, he was diagnosed in 2009 and I suggest they make contact. They smile politely. He also has lower limb progression. I liked them both very much and truly wish them well.

As we wait, a driver attempts to chat and passes round some chocolates in an attempt at Christmas cheer. Nobody takes one. "They're Belgian," he urges. He can't believe anybody would refuse a free chocolate.

At 16:30 Roch's name is called and we leave the hospital. We get home around 17:20 and although I am glad we endured it, as we saw Dr. Hind and had a good report of Roch's respiratory condition, Roch is adamant he is never going back. I have to agree, it is something of an ordeal.

He will have to go back, of course - Respiratory care is essential - but Dr. Hind says he doesn't have to go back for a year, unless something drastic happens.
"Let's make it Christmas Eve next time," Roch says, with uncharacteristic sarcasm.
"I'll be here," Dr. Hind replies, unfazed.

When we get into the house, Roch heads straight for the back door, and cigars and beer must be produced, in that order. The only man in medical history whose respiratory condition improves with cigars. I ask you.

The mood is black.

"I'm sick of it," he says. "Sometimes I wish they'd tell me I'm worse, so I could just get it all over with. How long is this going to go on?"

I cannot lie and say I never ask myself the same question, in darker moments.

I know he is tired and hungry. I know with food and cigars and beer, the mood will improve. Or at least, he will be able to put those thoughts away for the present. He has always been good at distracting himself. He is a man with resources - his reading, his music. Years ago, when he left Dublin for London, his mother told me,

"I don't worry about Roch too much. He can be alone. He has the inner resources." Mary knew her son well.

I think of the couple I met in the waiting area. I wonder how we would feel now, if the positions were reversed. If we were talking about a second opinion because the news was bad, and they were at home, she lighting his cigar, he declaring he would never go back. It's an interesting question, because I am not quite sure of the answer.

More Highs than Lows

Roch goes back to the training room 

On 3rd December, Roch held court at one of the sessions on a Study Day Programme for Health Professionals at Princess Alice Hospice. He was there at the invitation of Gill Thomas, (Professional Practice/Therapies Educator). The subject of the study day was ‘Supporting People with a Diagnosis of MND’ and Roch was there to talk about MND from the viewpoint of a Person Living with MND. Many thanks to Gill who made it easy for both of us, ensuring that everything possible was done for Roch’s comfort. Rock's segment of the training day was presented by Gill as a series of questions and answers. Gill had spent time with Roch in advance to talk through his experience and on the day the questions she posed were around those areas of his life with MND which she knew would interest and at the same time instruct her course participants. The session went extremely well and Roch was in fine form - as eloquent and charming as always. I’m sure those present found it very useful. I was relieved that he didn’t run out of ‘puff’ as he says himself. 

Roch with Gill

West London & Middlesex Branch MND Association 20th Anniversary Dinner

With Mandy Garnett, Branch Contact - "A Force of Nature..."

On the evening of 4th December, Roch, Kate, her boyfriend Will and I went along to the West London & Middlesex branch 20th Anniversary Dinner. Chairperson Janis Parks had asked me to give a speech on the night, just before the auction. I spoke about what the Branch has meant for us as the family of a person living with MND. I was flattered and amazed at how well my speech was received and I can certainly record here that the entire night was a resounding success. I was too nervous to eat much, so I can’t really comment on the food (except - Mick Stone did you work out what the flavour of the green sorbet was in the end?) but the company was great, so was the music - and the decorations were very festive. Best of all, I believe quite a lot of money was raised. 

Will, Kate, Me, Roch and Janis Parks (Branch Chairperson)

"And another thing..."

So many people came up to me after my speech and told me that what I had said resonated with them - usually their comments were prefaced by “My husband/wife/partner/brother/sister/uncle…died twenty years ago of MND - or ten years ago - or six years or two years ago” - so many people affected, having gone through what we are going through now. It’s a disease that leaves its mark, even after many years. It creates a feeling of fellowship and understanding, yes - but I notice that amongst carers and relatives, even many years after their loved ones death - the healing must continue, because the scars it leaves are deep. In my speech I mentioned, for the benefit of those present who may not have been aware, that MND comes in different forms and that each person with MND experiences symptoms differently - this is one of the reasons I think, that it is so difficult to find a cure. But although patients’ experiences differ, I believe that the family caregivers’ experience is similar. We all have to watch as our loved one is physically devastated by this cruel disease. Our family is lucky as the progress of MND in Roch has been slow. In its most common form we know it proceeds with a stunning rapidity, which, for family, must be overwhelming to witness. 

I talked about my experience of the first Open Meeting we attended (pretty overwhelming) and contrasted it with the latest, which took place on the Sunday before the dinner (amazing). Both were Christmas gatherings. The dinner and the most recent Christmas Open meeting reinforced for me the feeling of being part of another, bigger family. Like family should, the members of this family welcome us, value us and wish us well and I know they will do whatever is in their power, to make living with MND easier, more bearable - not just for Roch, but for me and the kids too. That evening was one hell of a ‘high’ for me. 

Mother and Daughter

I cannot end this ‘Highs’ and ‘Lows' blogpost without mentioning one other High - at the Christmas Open meeting we met Branch Patron Jeremy Vine. The usual welcome treats were present, including Santa, a massage for me and plenty of delicious cake but the highlight of the evening for me was meeting Jeremy, who brought his talk to a close by wishing Roch a Happy Birthday and introducing the Birthday cake! 

Happy Birthday Roch!

Updates - Highs and Lows: Tax and Team Roch

There have been highs and lows since my last post and I will tell all in the next few blogposts, not necessarily in chronological order.

But first, thank you to everyone who contacted me with messages of support. I tweeted ‘The Taxman Cometh’ and was fortunate in that my tweet was noticed by Jim M, who offered great support and advice and signposted us to TaxAid, a Charity which helped us out of our tax hell. Caroline there advised us not to answer the door unless we knew for certain it wasn’t the Bailiffs! This was helpful although slightly embarrassing as I had to call through the door to ask who was there - thank you for that HMRC - but it was good to get practical help on this. 

Caroline worked out that HMRC had estimated an amount of PAYE Employer contributions owed by Roch based on the amount paid in respect of Jenny’s employment last year. However, Amelia is self employed and so no PAYE employer contributions were owed. The payroll company should have notified HMRC that the PAYE Schedule should be closed and they also should have filed the appropriate Notices of No Return. They had failed to do this. As you already know, their failure to act left us in an extremely stressful and anxious situation, not to mention embarrassing. Roch had sent them copies of every demand letter asking them to deal with it but they never had. In fact, they told us that they couldn’t speak to HMRC and that we would have to sort it out ourselves. When we eventually managed to speak to someone at HMRC (not an easy task), he told us that this was ‘nonsense’ as the payroll company were clearly marked down as Roch’s agents, as they dealt with payroll on his behalf and he told us to ask them to call HMRC themselves. 
As far as we know, they have now filed the necessary notices but they have yet to confirm that they have spoken to HMRC. I feel safe enough to have taken down my notice from the inside of the front door, which reminded everyone in the household not to open the door, without politely enquiring who it was outside. The postman, the amazon delivery man, a few neighbours and a number of people who called to the door in the evening and did not answer my question - were all treated to the “Who goes there?” treatment, the latter few being denied entry as I could not be sure it was not the Bailiffs. So, sorry if that was you out there on the doorstep. You should have answered!

The search for new Carers to add to Team Roch continues…

I was very low about this last month but things seemed to be looking up in the first weeks of December when two people were recommended to us. We arranged shadowing sessions for each of them for the morning routine and Roch gamely consented to be showered and dressed in front of strangers (on separate occasions). I had to admire him for attempting small talk whilst having his morning piss in a bottle. Both women were lovely and we all got on really well, which made it particularly disheartening when neither of them accepted the position. I know they had their reasons but I must admit to a day of darkness when I realised neither was coming on board. All my optimism evaporated and my mood crashed. It was one of those days when tears were never far away and the knot in my stomach got tighter and even more tangled than usual. 

Whenever I feel that my life is spiralling out of control - that’s when I need to control the little things.  I wake early but cannot rest, my mind full of negative thoughts. I have to get up and I find myself constantly on the move, doing things, ticking tasks off a mental list. It’s only when I’ve tackled most of the items on the list that I feel like I’m regaining some kind of control, but by then I am worn out. I can barely eat when I feel like this so I am probably ‘weak from inanition’ to quote Jane Eyre. As you may have guessed, this was one of the low points.

(Monika, it was at this point that the Daily Energy Routine took a hit after two weeks straight without missing a session. In what felt like a bitter twist I didn't have enough energy for the daily energy routine. However, I am back on track now, hoping to be energised and have clarity of mind coming up to Christmas!)

In better news, and to record a definite high point, someone who has shadowed me twice (clearly unfazed by conversing with Roch as he pees) has agreed to come on board and help us and you will be hearing more about her in later posts when I will make an official announcement. You know who you are and we are thrilled to have you! 

The Taxman Cometh

So the newest anxiety has been provided by the Tax Office and we have received a series of demands for unpaid PAYE. Well the thing is we don’t owe them anything as Roch does not employ Amelia, she is self employed. Because our lovely Jenny was employed by Roch, and he did pay PAYE on her behalf, they have presumably made a calculation for this year based on this amount. You’d think it would be easy to sort out, yes? Well, think again folks, because they never answer the telephone and give no email address for a response. After numerous attempts to contact them, Roch made the payroll people at Hestia aware of the problem and they have also failed to respond to him. 

It appears that the only way to contact the Tax Office is to pay up. 

We have now received a demand for £1800 from the tax office and apparently if they don’t receive the money before the deadline of 25th November (letter received on 25th November), they are threatening to send the bailiffs round.
So any day now. What on earth are we to do?

Roch has written to our MP - who has not yet responded. 

Am I the Only One?

How many times have I sat myself down over the past few months, intending to blog? Only to close my laptop and come away, defeated. Countless times. Only once have I managed to put words to paper and I didn’t publish it. It felt too raw. I sounded too angry. Now I think, why bother with this blog if I don’t write and publish? I must be honest about how I’ve been feeling. 

My doctor doesn’t think I’m depressed. She feels that if we can get the migraines under control I will feel a lot better. She is trying me on different preventative medication. Last week I had the worst migraine for years. It took me out for two days. Thank Goodness for Amelia, Roch’s PA. But maybe it will take more time for this medication to kick in. I feel sleepy in the mornings now. I lack motivation to write.

This week I am taking time off work, trying to take control. Back to recruiting another Personal Assistant. Do some writing, do some blogging, start the Christmas planning. Maybe I’ll get my hair done. 

We have just emerged from a weekend family visit. All Roch’s brothers, brother in law and cousin. How Roch enjoyed it. Football, pints and plenty of banter. How can I explain their presence in our lives? A blessing, truly. It’s a bit like being in the middle of a whirlwind - there is a furious energy about them which fills our house. Roch relishes it. Sometimes I feel a bit like a spinning top when they are all here together, spinning from one to the other - delicately balancing, lifted by their energy. When the door closes behind them, I come to a stop, slightly dizzy perhaps, but grateful. Each brother brings something different to our lives but they all bring their love for Roch and their fabulous goodwill towards me and the children. I want to thank each one of them. You all make a difference to our lives. And thank you, too, for listening and doing your best to make the visit work for us. 

So, below I publish a blogpost written earlier this month. Make of it what you will. I am not asking for your sympathy, I just need you to know. If you like me less for it, so be it. 

“Blogpost 15 November

What a struggle it is at times. Relentless and all consuming. Impossible to continue kidding myself that we can carry on as a normal family. We can’t. If our relationship and our family unit is to survive, we must have more help. For six years we have managed very well. Why now? Why after six years do I feel that i just can’t continue like this? First of all I guess his condition is worse. Visitors see him in his recliner or wheelchair and thank goodness, he can still talk to them, although it’s more tiring for him and generally more difficult. He drinks his beers and his spirits rise when he’s in company. He seems relatively unchanged, perhaps? In himself he is. He remains much the same Roch. Surprisingly cheerful, considering. Do they realise the effort it took to get him from bed to chair? The physical and emotional toll the last six years have taken on us all? 
The good news is that he has been reassessed for NHS Continuing Care and he qualifies. So the responsibility for funding his care will pass from the Local Authority to the NHS. You may not know the best bit. Remember the Prince of Darkness? He came to assess Roch in March. We heard nothing for months and so in September we chased them. After several phone calls and attempts to get an answer we were informed not only that the Prince of Darkness had left his post, but that he had never submitted any paperwork for Roch so his application wasn’t even in the system. They apologised and arranged a date for a new assessment to take place. 

Now we are in the happy position of having more hours funded by the NHS but so far we have had no luck in our attempts to recruit. A combination of exhaustion, migraines and lack of motivation has meant that I have not been as active as I perhaps should have been in recruiting. At the same time the situation here has been getting me down to such an extent that recruiting someone should have been my first priority, but I felt stuck, depressed and yes I’ll admit to it - resentful. Not towards Roch - after all, it’s not his fault - just angry that my life has been taken over by caring. What sentient human being would not be? Sad, so sad that this is what it’s come to for us. Here we are in the prime of our lives and I spend two-three hours in the morning, when I’m not working and when Amelia isn’t able to cover, getting my husband up, helping him to pee, hoisting him into his wheelchair, giving him his PEG flush and meds, lighting his cigars, holding his coffee cup with straw up to his lips, hoisting him onto the toilet, administering the qufora, transferring him to his shower seat, showering, washing, shaving, cleaning the stoma site, drying, applying various creams, drying him, dressing him, transferring him to his recliner, cooking food then feeding him…

That’s the morning routine. He’s so tired after the shower that he needs his ventilator again. Ipad, mobile phone, slippers, water/coke, more coffee and then the food preparation. Try doing all that with an incipient migraine and see how you get on. 
Some days I carry my duties as caregiver lightly, my spirits are lifted and I can see the difference it makes to him. I’m not stupid. 

I’d love to say that every day I am loving and gentle and giving. But you know what? I’m human. Most of the time I don’t feel like his wife anymore. I feel like his nurse and carer. I read about other wives/partners who are also caregivers and I think “How do they do it? How is everyone else so consistently gentle, kind and loving? Is that so? Am I the only one to sink, exhausted into a chair and hold my aching head in my hands, grieving for a life together lost. For my life lost. And yet I don’t want it to be over, I don’t want it to end, because when it ends, that is the end of him and what will I do then?”

"What do We Want?" "Choice!"

Outside Parliament yesterday the mood in the supporters camp was optimistic and determined. We arrived to a sea of pink, delighted to see that Roch featured on a number of placards, borne by enthusiastic fellow supporters of a change in the law. After greeting our Dignity in Dying friends, we donned our pink campaign tee shirts and chose placards before joining the throng. Across the way opponents gathered. An enormous and ludicrous inflated effigy towered above them, depicting a Judge wielding a syringe. If anything could underline for me the ignorance and scare mongering of their campaign, well, that was it. Poor, crude and, unsurprisingly inaccurate. Again, depressingly, it seems the opposition are there to demonstrate against a law which is not being proposed. Have they even read the Assisted Dying Bill? If you oppose it, fine, but at least know what you’re arguing against.

It’s simple. It’s about the right for terminally ill adults (that’s right, adults who are DYING not people who are healthy and want to end their lives, not disabled people – unless they are also terminally ill)  who are judged to be mentally competent (this is to protect vulnerable people) to have a CHOICE about the manner and time of their death.

Palliative care in this country is excellent but it is not enough in every case, as the families of people who have died a lingering death in agony will attest. Why do we need a change in the law? Ask the families of those who have been forced to travel abroad (not everyone can afford this) for an assisted death, while they are physically able to make the journey and therefore forced to die too soon; or the families of the dying adults who decide to take their own lives, alone, for fear of the consequences for their loved ones. How any thinking, feeling human being can oppose this is beyond me.

"The LAW is broken. FIX IT!"

Our chant was simple:

“What do we want?”           

“Choice!”

“When do we want it?”

“Now!”

But it was not to be. Still there will be no Choice. Although 82% of the public support a change in the law on assisted dying for terminally ill adults, our MPs (not my MP) voted overwhelmingly against a change in the law. We are gutted by the result of the Commons vote, but the campaign will continue and we will continue to support it.

Tom, me, Roch and fellow supporter with a 'Roch' placard.

Me and Amelia. News of the vote soon wiped the smiles off our faces. 

Many thanks to all who came out on the day to support a change in the law and to those at Dignity in Dying who looked after us so well and continue to support us. If you feel you don’t know enough and would like to know and understand the issue more fully, please visit the Dignity in Dying website at: http://www.dignityindying.org.uk/

Postscript:

Our journey to Westminster was thankfully almost completely stress free. Bus first (where the bus driver insisted I pay, although I had Roch’s Disabled travel pass and should travel free as his carer). Then arrival at Hounslow East tube station where two friendly staff members arranged for a ramp onto the train and called ahead to Green Park station. While we waited with them on the platform, we were treated to a rare piece of comedy, as we observed them very carefully remove a poster on the platform wall. We then watched, stunned as they proceeded to replace it with  – another poster identical to the first! Very Stan and Ollie...

Arriving at Green Park we expected to be met by staff but the platform where our carriage stopped was level with the train so Roch disembarked without incident. Mental note: no staff assistance needed at Green Park as long as you are disembarking from the correct carriage.

We joined the crowds making their way through the subway to the Jubilee line and after two lift journeys, arrived on the blissfully disabled friendly Jubilee line platform. Roll on, roll off. One stop to Westminster.

Nearly there!

The journey back was similarly stress free (apart from one hairy moment when Roch’s chair got stuck between the door of the train and the pole inside the carriage).  Thanks to station staff at Westminster, Green Park and Hounslow East who were on point with guidance and practical help every step of the way.

It really makes you grateful to have two working legs.

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…

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) 

                                                         

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 20^th

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 21^st

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 25^th

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. 

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 24^th  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 24^th 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 13^th 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 4^th 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:

21^st 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...

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 16^th 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?

https://www.yesuntiltheend.co.uk/

  

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.