Plans for the Day

Roch is getting more used to the nippy at night and he can take the mask off now by himself if he needs too. I find I can drop off to sleep with the noise, no problem, but if I wake in the night, it's hard to get back to sleep. The other night I had to take refuge upstairs on the futon in our old room. When this happens, I know I am just a text away. Last  night, my sleep was broken, but I dozed off again each time I woke up. We went to bed too late anyway, as Tom is home for a few days before term time lectures begin in earnest and we were all excited to have him back, even though he's only been gone just over a week! It's good to be all together again.

This morning I am somewhat bleary eyed but Jenny is coming for the day and Roch  is meeting an old friend for lunch. Kate and I are off now for a few hours' shopping and later  I will see my counsellor but already I'm looking forward to taking a nap when I get back...

"Be where you are"

We have been expecting a date from The Royal Brompton for Roch's PEG operation. The doctor indicated that it would be sooner rather than later and in fact suggested at the time (early December) that if we were given a date before Christmas we could ask that it be deferred until the New Year. So I was getting uneasy that we hadn't  heard anything yet. Well, good thing we thought to check. When we called the hospital today we discovered that although the doctor had referred Roch for surgery, the coordinator hadn't picked it up and scheduled it yet. I spoke to a member of the  medical team and we had a call not long after from the coordinator. We are told that he is going on the list today and his surgery should take place within the next few weeks. It's frustrating as we'd really like to plan ahead and it does feel as if we've been overlooked. 

He's still feeling fatigued during the day although he's using the nippy all night now and for part of the day. Today he felt quite breathless when he was sitting down on the shower seat and I was drying him off. The breathlessness dissipated once he was standing up in the hoist and after, when he was using the rollator to move to his chair. So that's a bit different. 

January is such a dull month and can make me feel melancholy but I'm trying to be positive and notice the beauty of winter, taking pleasure in the little things. The garden is absolutely sodden but I'm just going to enjoy looking out the window at it for the moment. No pressure to do much gardening in winter. Before Christmas I invested in a squirrel-proof bird feeder and it works! Every couple of days I replenish the supply knowing those pesky animals wont be able to poach any. The birds are hungry.

Today I made a pot of tea in my lovely Polish pottery teapot. It has such a pretty pouring spout, although the rim of the pot is chipped. Seeing the scented steam rise as I poured the tea was a real pleasure. 

Later I walked through the rain-soaked streets at dusk to do some grocery shopping and stopped to notice the pale moon in a patch of clear sky, framed by  bare wintry branches. 

“As you walk and eat and travel, be where you are. Otherwise you will miss most of your life.” ~ Buddha

“The longer we dwell on our misfortunes, the greater is their power to harm us.” ~ Voltaire

Community Matron comes up trumps

I may have mentioned that over the past six months or so, it's become increasingly difficult for Roch to pee standing up. We mentioned this to our Occupational Therapist and she asked Medequip  to fit a grab rail on the wall beside the bio bidet in the wet room. It seems that communication isn't their strong point. The first guy arrived, had a look and told us that it would be impossible to fit a grab rail there because the old kitchen pipes were behind that wall. He shook his head sadly and headed off. A number of his colleagues followed - six in all - and one day we were treated to three visits in total. At first, each time I thought 'Great, they're sending someone else with new tools and he'll be able to do it.' Eventually I just gave up and asked them to stop coming as each guy said exactly the same thing! To be fair there was one point where my hopes rose again as one of them carried a big bag of tools in and took a look at the wall behind the bio bidet - but no, it appears that it's a 'stud' wall so not possible.
Meanwhile attempting to pee standing up at the toilet was, in my view just becoming too risky. Roch was determined to continue to try but leaning forward, knees against the toilet bowl and one hand flailing out in an attempt to grab the windowsill did not strike me as a good way forward.
Our Community Matron, Jo Lambert to the rescue!
Roch can still make his way slowly round downstairs with 'Old Roll-ee' and so Jo fashioned (no other word will do) a stylish holder for a pee bottle. This is now suspended from the grab rail in the sitting room. She even - wait for it - designed it with our colour scheme in mind! This is innovative thinking at its best. Roch can hold onto the grab rail with both hands either side of the bottle holder and is perfectly secure.
She really should patent it - I had wanted to post some photos of the new pissing device, but 'blogger' has let me down and after several attempts, I give up. Maybe next time.
Anyway,  I swear that woman has an answer for every problem and if she doesn't she'll sit and listen to you anyway with great patience and empathy. A valuable member of Team Roch. Thanks Jo!

Just another Day

I had a really bad night last night while Roch slept like a baby downstairs! (Perhaps it's me keeping him awake?) At one point I woke from a nightmare where some old dude was stubbing his cigarette out on my neck. My friend and colleague LB wondered if it meant I was feeling overwhelmed and 'used'. Good theory. Not sure. Hope not. 

Anyway when my alarm went off at 6am I was in no mood for rising but work is work so off I went. There was no traffic so I got there by 7.15am for my 7.30am shift. The morning gradually got busier and my head got heavier. I greeted lunchbreak like a long lost friend but back at my desk at 2.00pm I was definitely lagging and my head was in protest again. But I made it through to the end of my shift, bade farewell to my lovely colleagues and stopped off in Tesco on my way home. I emerged from the store (clutching two Erdinger for you know who) and then spent ten minutes looking for the car. Not good to mislay the car. Eventually found it by chance (Really? Really? So did not remember parking it there...) and so back home to the welcoming smiles of the man himself and our Kate, tea and toast and nap time. I can now lie down in the knowledge that Kate can take care of Roch's needs in my absence.

She has recently been initiated into the mysteries of assisting her Dad to go to the toilet. This has not been easy for either of them I would guess but I am so proud of them both. She goes about the job with a practicality and tenderness that does her credit and he accepts her help with dignity and good humoured grace. 

Tom has been performing this personal task for some time now (and all credit to the lad) but since his departure for the heady delights of third level education, Roch has had to overcome the very natural reluctance of a father in accepting his daughter's help in the bathroom. It's another obstacle overcome and a personal challenge met, although one which I'm sure he would not have chosen to face. 

I take some advice from Hemingway

2014 has seen the introduction of the nippy at night. From my point of view, it’s pretty noisy but I’ve managed to sleep pretty well most nights so far, thanks for asking! Poor Roch dreaded having it on at night.  He didn’t keep it on all night at first, bearing it up to 4am or 5am, when he would ask me to remove it. Last night we tried something different, as I had had a migraine and needed a good night’s sleep to see it off completely. Kate and I set the nippy up on the hospital table over the bed within easy reach. Roch made sure he could press the button to turn it off – he can take the mask off by himself. Armed with Kindle, I-Phone, I-Pad and environmental control I-Phone, we left him alone. Kate was on call but Roch slept right through until 7.30am, nippy on. He reports that although he still felt tired, his mood was better during the day. Time will tell. The important thing is for him to get used to having it on at night. I slept like a baby upstairs. We are going to try the same thing tonight, as I have an early start for work tomorrow, but then I’ll go back to the marital bed and see if I can sleep through when he doesn’t need the mask to be removed during the night.

That bed has been moved downstairs, raised, shifted into a different position in the room, had a bedrail and extra mattress added (after several different types were trialled) with the addition of a sliding sheet – we are trying everything to hang onto it for as long as we can. The monkey has so far failed to dislodge me, although I now occupy a smaller space due to the smaller extra mattress on top of our own mattress and frequently wake up to find myself sliding out onto the floor!

So, 2014 – who would have thought we’d make it this far? So many milestones have been passed, so many losses mourned since June 2009. We don’t have a date yet for the PEG operation but I’ll keep you posted.

As time goes on I find I am less accepting of what has happened to Roch and feeling angrier. Less tolerant and more impatient with people who really don’t ‘get it’. More fragile, but more empathic to other people’s suffering and loss. I find it more difficult to come to the blog page and guiltier about my absence.

I thought I would share with you an unedited extract from my daily writing journal (unedited apart from insert in bold) – a peek into the stuff that doesn't make it into the blog. But maybe it should.

As Hemingway said, "Write hard and fast about what hurts."

“Why do I half do things? And spend so much time on stuff that doesn’t matter? Or well now maybe it matters to me. Here I am trying, trying to get some stuff out of my head and down on the page so that ‘ideas flood in’. Have spent so much time reading about writing, too much time on twitter today – my eyes hurt. How to motivate myself and get through writer’s block; I could – let’s see, clear the clutter, go for a walk, have a shower (I need one), put on some lipstick, make a big pot of tea and pretend to be Virgina Woolf or Ernest Hemingway and write (actually that’s great advice courtesy of @LauraPepWu and I intend to follow it). If it was Ernest Hemingway it would probably be more like a bottle of whiskey, but I get the idea. Am I wasting time up here while Roch is downstairs with Jenny to look after him? Probably should have been trying to write hours ago. I need some space in my head! Of course now I haven’t eaten too much in the past two days so my digestive system will be out of kilter. Moan groan shout roar scream kick up and make merry hell. Feeling like shouting or destroying something, smashing a plate or yelling at the top of my voice. I’m such a good girl, always doing the right thing, in control of myself. What would it feel like to let go? Lamp someone, (see, I like the word but I wouldn’t want to actually hurt anyone deliberately – why? Because there would be consequences? Or because I wouldn’t actually want to hurt anyone? Hmm…)

Knuckles connecting with bone and flesh – crrrunch!! Beat the monkey to death maybe – there’s a fantasy worth having. Fur and blood flying, sticking to the surface of the wooden bat. Fucking monkey, taking my life away (and Roch’s of course). Fed up trying to list all the things in my life to be grateful for – that’s what they tell you to do. I know there are so many things to be grateful for but such a lot sucks! I am allowed to rail against it!! Now, if I could blog every day for 15 minutes – would that help? That couldn’t be too hard, right? HA! HA HA HA HA HA HA HA HA HAAAAAAAA FUCK IT! YOU’LL NEVER DO IT! No? Who sez? Me, I say. Me, your inner voice of truth and despair. Listen and weep. For you will never amount to anything in this world --------------Oh shut the fuck up I’ll give it a try.”

Fifteen minutes every day, it can’t be that hard, can it?

An MND Milestone

Our visit to Westminster was exciting and you will read in future blog posts about further adventures to come, but closer to home, we are facing some changes.

Those of you who meet me on facebook will know that we recently attended an appointment at the Royal Brompton Hospital. Here we meet members of the team who monitor his breathing closely. At each visit, they check Roch’s blood gases to see if the oxygen level in his blood is okay and they check his breathing. The results last Tuesday held no surprises for us. His FVC (Forced Vital
Capacity) is lower now and measured at around 58%. Many factors can affect a reading and if taken again now or tomorrow – the reading could be higher or lower. But it gives them an idea of the rate at which it is decreasing. Oxygen levels are still good.

They have advised that now is the time to begin using the nippy (non-invasive ventilator) at night. The idea is to improve quality of life during the day, as Roch is feeling more fatigued in the daytime now. We haven’t started this yet and yes there is a reluctance to make this change – it’s a bit noisy and having a mask on your face all night isn’t going to be too conducive to sleep, but they say he’ll get used to it. I hope I can sleep through it. We’ll see. I’ll let you know.

We have also come to another MND milestone – the dreaded PEG (Percutaneous Endoscopic gastrostomy). I’ve mentioned it in these pages before. We don’t have a date yet, but sometime in the New Year, Roch will be going into the Royal Brompton to have a PEG fitted. It’s important that the procedure is carried out whilst he is still relatively fit. They don’t like to carry out the procedure in people with a FVC of less than 50%.

Roch isn’t experiencing bulbar symptoms (problems with swallowing etc.) but as his breathing is compromised and he is losing strength in his arms, it is becoming more difficult for him to eat. Lifting the food to his mouth is tiring for him – he doesn’t really like being fed by me or anyone else, although occasionally I help him to finish a meal. His appetite has diminished somewhat and his weight fluctuates. He weighed 12st 7lbs when he was diagnosed – now he weighs 10st 5lbs. It’s been a gradual decline, and some of it is muscle wasting but I’m sure other carers will sympathise when I say it’s a constant worry to me – am I feeding him enough? Is he having enough nutrition?

So the idea of the PEG is to introduce nutrition in some other way than through the mouth. This usually involves passing liquid nutrition, which has been specially formulated, through a tube into the stomach. This tube is inserted directly into the stomach through the abdomen.

Tube feeding doesn’t necessarily eliminate oral feeding. Roch will probably go on eating his favourite foods by mouth. He may not even need to use the tube for some time. He will have to stay in hospital for a few days, they told us – so that they can monitor him. It’s because they are extra careful and that’s got to be a good thing.

I’ve been reading up on it on the MND Association website and they say swimming is possible after a PEG is inserted. This is great, as Roch hasn’t been able to swim for about three years now. (Groan  – I think I’ve made that joke before but I felt the need to inject some humour).

 Here is a helpful diagram, which comes from MND Association Information Sheet 11, about PEG feeding. If you would like to read more about gastrostomy and MND, follow the link below:

 

 

http://www.mndassociation.org/Resources/MNDA/Life%20with%20MND/Information%20Sheet%2011%20-%20PEG%20and%20alternative%20feeding%20-%20making%20the%20decision.pdf

A Photo shoot, the Thatcher Room and an Old Friend

We were back at Westminster last Wednesday. This time at Portcullis House. Roch was asked by the MND Association to speak at the All Party Parliamentary Group meeting to launch the findings of their audited Report on Specialist Palliative Care in the UK. One of the main findings from the Report is that MND is a 'hidden' disease with few health trusts even knowing how many people with MND live in their area. Of course Roch's experience has been different. His job was to bring his positive experience of palliative care to the meeting - how it could be for everyone, throughout the country. At present it is a matter of chance and to coin the over-used phrase - a postcode lottery.

There were nerves, of course, but he had written his speech himself, so knew exactly what he was to say. This had been vetted by the Association (and checked and timed by me, his editor!). His principle concern was that his voice would hold out for the duration.  A slight complicating factor was his busy schedule on the day itself.
A telephone interview with a journalist from the Independent took place in the morning and we then waited for the arrival of their photographer. In the meantime we carried on as normal with shower and dressing - extra attention had to be paid to the grooming process, of course. Our cab was due to arrive at 3.00pm and time marched on, with no sign of the photographer arriving. He arrived with less than an hour to spare but wasted no time in producing a range of what I can only describe as 'pop-up' lighting equipment from a small case, rather in the style of Mary Poppins. He was pleasant but professional and in no time he had transformed our sitting room into a photographic studio with Roch as his model.
 "Look into the distance Roch", "Now to the right," "Now to the left," "Again, into the distance Roch," "Straight at the camera now..." The taxi arrived as he was setting up outside for shots at the front door but the driver waited patiently until eventually the 'shoot' was over.
The final picture appeared in the Independent's sister paper, the 'I' on Thursday 21st November. Roch looks set, determined and a little bit wide eyed and scary. But I guess that must have been what the guy was going for...as he chose it from about 500 shots.
The journalist who interviewed Roch was Sarah Morrison and she used him as a case study to back up her article on the launch of the Report. The article was accurate and well written.

"To the right, to the left, now into the distance..."

Anyway, I tried my best to encourage Roch to save his voice for Westminster. But he's such a friendly, chatty person - it was difficult. First the photographer and then the taxi driver!
Eventually we made it to Portcullis House with time to spare and met with Alison Railton, Public Affairs Manager at the MND Association. We had met before, in 2010, at the original APPG inquiry, in which Roch also took part. As always, Alison made us both feel comfortable instantly. We walked with her along corridors lined with original artwork - paintings of individual politicians past and present and huge canvases depicting Parliament in session. I could have spent longer examining the details but duty called and after a short briefing in one of the public coffee areas, it was time to make our way to the Thatcher Room - much to Roch's amusement. Had he known, he remarked, that the meeting was to take place there - well, he might have reconsidered...
 Personally, I think the Iron Lady looks equally perturbed to find herself in a photograph with Mr. Roch Maher...
 


"True Blue" meets The Main Man

Once inside, we were introduced to Chris James, Director of External Affairs at the MND Association and Dr. David Bateman, National Clinical Director for Neurology. Greg Mulholland MP, Vice-Chair of the APPG on motor neurone disease was there to chair the meeting - but warned us all that the Division bell was due to be rung at any minute - which of course would herald the departure of every MP in the room - and so it proved. Happily, the bell did not interrupt Roch's speech, which went off without a hitch. He made us all proud.
To read a report of the meeting and see some of what Roch said, use the link below, which will bring you to the appropriate MND Association website page.

With Roch, Chris James to the left of the picture, Dr. David Bateman on the right.

 

Friends, Old and New

 
The departure of the MPs (boy that bell is LOUD) left a smattering of individuals in the room present for the remainder of the meeting. I found myself taking notice of one woman in particular. She seemed familiar. There was something about her confident, decisive manner and the passion with which she spoke...
After the meeting closed, we were approached by a woman whose husband had died of MND just last February and who works in the office of one of the MPs. We spoke together for some time. It was good to talk to her but such meetings leave me with a strange mixture of feelings - MND wife meets yet another MND widow.
As we spoke, the woman I had noticed earlier came over with her companion and work colleague. I was overwhelmed with such a strong feeling of familiarity. I knew her first name was Liz - her second name? Garrood, she told me. Immediately I turned to Roch and rather rudely interrupted him in my excitement,
"Roch, it's our Liz!"
That will live in my memory as one of those golden moments, as we renewed our acquaintance with Liz Garrood.
Roch had begun his speech earlier by recounting how, after the shock of diagnosis, he had called the MND Association and within a week, they had sought him out. Their then Regional Coordinator arrived at the house to meet with us within days of his call. We will never forget her. In a time of shock and confusion, misery and grief, she brought a positivity, an energy and an empathy to our house that day. She talked to us frankly, answered all our questions directly and discussed with us the burning question of the day - how to tell our 14yr old and 17yr old that their father had MND. I remember her walking round the house with encouraging words about how much space there was to adapt. She told Roch that she was more worried about his cholesterol levels than his MND! She was the first person to make me feel that we just might be able to live with The Monkey. We never met her again, and she moved on about six months later. But we never forgot Liz Garrood. She calls herself  'The One Hit Wonder'. She now works as Care Coordinator in Hertfordshire. All I can say is, Lucky Hertfordshire!

 

Liz Garrood, left. Her colleague Anna is on the right of the picture.

 
It had been a full but tiring day for Roch but as we made our way past the oddly jovial police officers guarding the entrance to Portucullis House into the cold night air at Westminster Bridge, we had to agree - it had been an interesting day and a successful one. Well done Roch, we are so proud of you.
 

Big Ben looms behind the façade of Portcullis house

http://www.mndassociation.org/news-and-events/Features/Westminster+Launch+For+Palliative+Care+Report