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
 

Out and About

Selfie!

Despite the fact that Roch tires easily now, we have managed to get out and about over the last couple of months.  It felt like quite an achievement when we made it to witness James marrying his beautiful Sabrina in September. Roch looked dashing and it was an excuse for me to dress up and get the hair done. We were both looking forward to such a special occasion but for me it was just vital to make sure Roch made it. I knew how good it would feel for him to be a part of that day. So when I woke on the morning with a stinking headache, my heart sank. Not a good start. But hey we took it slowly and got ourselves all dolled up, well I got ourselves all dolled up...and we left plenty of time for the drive to Stoke Newington.  The headache nagged away all day but never crossed into migraine territory and we managed to stay until just before the dancing started. Roch was okay with leaving then and we reached home without incident, in a rosy glow of triumph. May I just say for the record that we wouldn't have had such a stress free time without Terry's help (not to mention the pleasure of his company).

There’s always some difficulty to overcome – some disaster to be averted. But that’s just it, the difficulty is always overcome and the disaster is always averted and every time it happens, it just proves that it was worth the effort made.
Take James and Sabrina’s wedding – all went well, and with the beautiful ceremony over (not a dry eye in the house) we headed out of the council chamber to take the lift back down to the ground floor. Unfortunately it wouldn’t budge! Without the lift it meant that Roch was effectively stuck several floors up with no way to exit the building in his chair. So we just had to wait until it was fixed.

So we did, and to be fair, it didn’t take them too long. But it does go to show how vulnerable wheelchair users can be to the vagaries of machinery. It didn’t feel good to watch everyone trot downstairs ahead of us. But the rest of the day passed without incident. Although there were steps into the pub where the Reception was held, by means of brute strength, and the combined efforts of the manager and the redoubtable Terry, the wheelchair with its precious cargo was lifted inside. All good. After an absolutely delicious meal, the only thing to mar the day was the best man’s speech, but the less said about that, the better!

All dolled up

Roch with Terry

 

You know, people generally come up trumps and this was proved to us again when recently, we encountered a problem at Kew Gardens. Kew has always been special for us and we picked a gorgeous day in mid-October to visit. It’s my favourite time of year and to be surrounded by the lights, the colours, the scents of Autumn in such a wonderful setting – well, it lifted my spirits.

Towards the end of the day Roch had to use the toilet. Now this is the thing he dreads when he is out and the reason why it’s difficult to arrange outings without a second helper. I don’t know about you, but we find that in public disabled facilities, the toilets are very low.  Possibly this helps some disabled people, but not Roch. The height of the toilets, combined with the diminished strength in his arms, means that he cannot stand up without assistance. I am not strong enough to lift him by myself (at home I use the hoist) and Kew’s disabled toilet facilities proved no different. So there it was, the moment he had dreaded. Stuck on a public toilet. There was no help for it, we had to pull the emergency chord. This could have been a moment of crippling indignity. However, a knock on the door brought the friendly and capable Jan to our rescue. She asked how she could help and Roch directed operations. Between us, Jan and I helped him to his feet.  Jan followed instructions, held on firmly, offering assistance with such respect, that she transformed the incident into a mere blip on the radar.  Gold star for Kew then – also just to mention that there are ramps into the exhibitions and level access to the main restaurant and shop. Disabled adults £14.50 with essential Carer admitted free.

As I say, he gets very tired and no longer objects to early bedtimes. However, we’ve both noticed a difference in his energy levels when he’s had the nippy on for a few hours. So the new routine includes nippy for a few hours every day. He’s still not keen to use it at night time but we’ll come to that, no doubt. We’ve been to a few more Brentford matches – that’s becoming more of a routine, with a few pints afterwards to round off the trip. As long as we can make it home for Strictly Come Dancing, I’m happy. (It’s called give and take, people…)

Is Everybody Happy? Then let Everybody Sing...

Years ago, when my siblings and I were teenagers, my mother sought to shield my father from our whining and complaints at the end of the day (or perhaps it was just from my whining and complaints…!) I think she felt he had a right to a bit of peace when he came home, at least until after dinner. I remember on occasions, home from school, presenting her with some problem, some upset from my day and she would listen. But if we were talking about it and his key was heard in the door, she would raise a finger to her lips and say, "Is everybody happy, then let everybody sing..."

This was my cue to shut up and present a happy smiling face and at least wait until after dinner to approach him, if ever. It was her way of protecting him, of setting the mood for a pleasant evening and I suppose, of making sure that he looked forward to coming home. He did like us all to be happy. But the reality was that we weren't always happy and it did sometimes make me feel like my feelings weren't so important.

I’ve been thinking about that recently. I’ve been thinking about how carers who are also spouses/partners/children sometimes have to put on the happy face to lift the mood of their loved one who is living with MND. It can feel difficult, it can feel like too much - a burden in itself, and it can make us feel like our feelings have to be hidden.

Don't you find, as a carer, that your mood sets the tone for the day? I remember one MND carer who told me how she made it her business to make her husband laugh before the first loo visit in the morning. I thought that was wonderful. I've probably mentioned it before. Her husband is dead now and I bet she's really glad that she was able to do that for him. That's real caring. I'm lucky if I can crack a smile myself before the first loo visit in the morning, never mind make Roch laugh. Here's the thing. If I'm feeling down, he feels down. The gloomier I get, the more he feels like a burden. I feel like I have no choice, I have to raise my game and set the mood. Sometimes it requires little or no effort, but sometimes it's a real struggle. I mean, carers have feelings too - right? Our feelings are important and we must be allowed to feel bad sometimes. But it's not too much to say that the carer has to maintain a certain level of positivity and cheeriness (as my mother felt she had to do, for her own reasons) in order to prove to their charge that they are not a burden. 

So I’ve realised that my mood is key. When I manage to get organised, make a joke, be cheery and positive, get us out for a trip somewhere - of course he feels better. It helps him to feel that life is still worth living. I do manage to do that, by the way - but it's definitely getting harder. Sure, I can talk to him about how I’m feeling, but it isn’t going to help him much to know I feel like shit. That’s hardly going to lift the mood for the day now, is it?

It hasn't been such a problem before so what has changed? Well, here's the thing. We've talked about this, he and I. It's been four years now and I guess it’s getting me down.  I don't want to jump the gun but it looks like we're in for the long haul (in MND terms, that is). More and more it looks like this is going to be our life together, perhaps for years to come.

He's getting worse, but slowly and yes, that's a good thing. But if we're in it for the long haul, I need to find a way to live this life without sinking into depression. Sorry but I've got to be honest about this. For his sake and for mine, I need to find a way to be happier in our life together, living with MND. We both deserve to be as happy as we can be in the circumstances. I have to find the strength from somewhere to carry us along, to have the emotional energy not just to look after him, but to make our life together worth living, for both of us. So what can I do to make myself feel better? There are times when I ask myself if I should perhaps be on anti-depressants? I know many carers are and it can be the answer.  Maybe, before the end, I'll have to be on anti –depressants but it seems early days to me. I don't want to go down that road just yet. So I have asked myself some questions.

I started out by asking this one:

Q. What makes me feel good?

A. Lots of things - a good book, the smell of freshly cut grass, a walk through Autumn leaves, crisp white sheets, being out in the fresh air, Strictly Come Dancing, a good box set, a twix bar with a cup of tea...Yes, yes, okay.  Stop now, that's all very well - so those are things I enjoy, but they are quick fixes and they don't last long (especially the twix bar and the cup of tea).  

So, I asked myself another question:

Q. What might help me in the longer term?

A. Meditation – well, I’ve tried it, I’m pretty hopeless but I can try again. Counselling. Yes, I do still go to my Counsellor (probably not often enough). Support from other sources, like the local MND group or the MND Carers group. Yes, although it’s not always possible to make the meetings and although it’s always worth going, and helps at the time, it doesn’t see me through in between.

So then a better question occurred to me, and here’s where I think I’ve made a breakthrough:

Q. What makes me feel good about myself?

A. Writing.

Want to know the last time I wrote anything or even tried to write anything? Well, I can't tell you because I don't remember and that makes me feel like shit.

Yesterday, I read an interesting blog post by a writer/blogger, who argues persuasively that being sad blocks creativity. Yes, he says, many successful writers have created from their own sad place in the world but, he says, sadness also blocks creativity. When we are sad or depressed, we start things, but we don't finish them, when we are low we don't have sufficient belief in ourselves to see the creative process through. I think he's right. In fact, I know he is.

I've said before that my default position is sadness. Well, that's not going to change, but I can take steps to help myself to raise my mood. I feel sad (bleats "...my husband has MND and life is so shit...") and so I don't write. I don't write so I still feel sad but now I feel bad about myself, and that makes me feel worse. So - I have made some new rules:

1. Get up earlier on my days off.

2. Back to my 'morning pages' and keeping a journal.

3. Write for an hour on every day off.

4. Write for half an hour on work days.

I hope that I will be a happier carer - a happier person if I can do some writing.  Maybe I'll discover that I need anti-depressants anyway. Maybe I'll find that I need them to get myself out of bed in the mornings to do some writing. If I do, I'll let you know. I hope that by doing this thing for myself, it will make a difference to the quality of our life together. I need to remind myself that being a carer is only a part of who I am.

All you MND carers out there - how do you do it? How do you stay positive for your MND partner?Do you feel it's up to you to set the mood for the day? Really, I'd love to know.

Q. What makes you feel good about yourself?

 

 

 

Do's and Don'ts for Neurologists

We recently attended a neurology appointment at the West Middlesex Hospital. Jenny came with us. The ‘West Mid’, as most people call it, still has the power to inspire fear in Roch and in me, on his behalf. Almost three years on from the death there of our friend, Gerry McDonagh (see blog post passim 03/11/10), Roch’s anxiety about being admitted to the West Mid persists. With each visit, we seek reassurance. Has the standard of nursing care for MND patients improved? Following Gerry's death, we had been told that an information leaflet about MND and the needs of MND patients was being prepared for nursing staff and at each of our visits we have enquired about this. The doctor we see there never has any answers.

Predictably, after our appointment we were no wiser and no less anxious about possible admission. Let me be clear - we are not talking about palliative care, as such. We are talking about basic nursing care. Gerry did not need palliative care on admission on a Friday, but he needed it by the end of the weekend because he did not receive the proper nursing care when he was admitted.

Roch calls it ‘Death by Hospital’.

As a result of our visit, I have prepared a list of ‘Do’s’ and ‘Don’ts’ for neurologists.

From this, you will gain a pretty accurate picture of how our consultation went.

 

Basic Do’s and Don’ts for Neurologists:

Don’t:

Interrupt your patient

Tell your MND patient that there are worse diseases to have.

Tell your MND patient that it would be worse to have bulbar symptoms first.
Tell your MND patient to ‘stay positive’.
Tell your MND patient that you might die before them.
Tell your MND patient that you have anxieties too.
Diminish your patient’s experience of their illness.
Tell your patient you have no power to change things.

 

Do’s:

 

Listen.
Acknowledge their fears.
Tell them you will do what you can to change things.
Do what you can to change things. For instance:

• Find out how you can ensure your MND patient will not die needlessly, due to inadequate nursing care at your hospital.
• Take action to start to change things.
• Get back to your patient to let him know what you have done.  

It’s not rocket science.

 

POSTSCRIPT:


Following the appointment Roch entered into email correspondence with Dr. Pearce, Consultant Neurologist at the West Mid, who has now sent us a copy of the information leaflet around the care of MND patients, prepared for nursing staff. Apparently this leaflet has been in existence for the last two years. As the doctor we spoke to was unaware of its existence, I suggest that Dr. Pearce lose no time in sharing it with the rest of his team.

We are, on the whole, pleased with Dr. Pearce's speedy response and it has gone some way towards alleviating our fears although we remain anxious.

He also drew Roch's attention to the CMC database:

"There is now a national data base for patients with life-limiting conditions known as Coordinate My Care (CMC).  You are eligible to join the registry (and I would urge you to do so) and this will alert care givers down to an ambulance level, so that all parties are informed, as much as possible, of your individual circumstances and preferences."

                                                  http://www.coordinatemycare.co.uk/
So we need to make sure Roch is registered on this database (and hope it functions as it is designed to do), that he is happy with his End of Life Directive and that the hospital and GP have copies of this on file. I can't say I'm filled with confidence.
I do know I have strong, supportive professionals on side, like Donna, our Hospice Nurse and Jenny, Roch's new PA but as his wife and main Carer I anticipate that it will be me in an emergency situation standing between the nursing and medical staff and my husband. Funny to put it like that, but that's how I see it at the moment - a 'them' and 'us' situation. That's not good. I clearly need more reassurance.

I do not want to be in a situation where a remark like "Wife claims husband has MND" appears on Roch's admission notes. True story.
 

 

 

 

 

Holiday snaps

Summer 2013

Shopping

Family Time in the garden

Richmond Green picnic

Look Out Kavos!

A Venezia...



                                                  And there was the  Graduation

Proud father






O'Neill's in Dublin "Mine's a pint, Dad..."

Bushy Park Walk in July



Football season begins...

"Come on the Bees!"



Post Holiday Blues

Roch is back in the Hospice for a respite stay. He wasn't looking forward to it, but the Princess Alice is such a lovely place and they do take such good care of him. Tom and I spent the afternoon there with him yesterday to help him settle in. Kate is in Spain for a week (booked before she knew the Hospice dates).

The last few weeks, since our return from Dublin, have been up and down for me. For both of us. We've had more than a touch of the ‘home from holiday’ blues. Maybe a week's respite will help.

It's been difficult, adjusting to the home routine again.

 

Picture the scene: A kitchen in West London. Mid- morning in late summer…

Man in  wheelchair, looking up from his I-Pad: “What are we up to today?”

Dejected looking woman at the kitchen table, listlessly turning the pages of last Saturday’s newspaper: “Nothing planned.”

“Oh,” man in wheelchair replies, “Back to slowly dying again then.”

 “I guess so,” she replies, stares out the window for a moment, then goes back to the newspaper.

 You get the picture.

We’re managing to drag ourselves out of it, but it’s hard. A new phase is beginning for the family. Back to reality after our holiday. Kate home from university, finding her feet again, Tom preparing to leave for his time away. We have a lot to be thankful for, I do know that, but sometimes when I watch Roch struggle to eat, when I winch him up from the toilet seat or the shower chair, when I look at him in his recliner, bony ankles sticking out, breathing through the nippy machine and trying at the same time to sip from a straw in his beer can, held to his lips by one of his children, it’s hard to feel that we’re lucky.

When I got back from the Hospice yesterday I felt stressed and sad. It cheered me to read a text from a neighbour, who wondered how I was feeling, home from dropping 'hubby' off to the Hospice. I was honest and told her that I felt stressed and sad, and she sent me some good night hugs. That meant a lot. Little things really help.
So what are the plans for the week? Well, today I was working. Yes, I know but I don't have enough annual leave left to take time this week. I have managed to swap two shifts, however. So I have the rest of the week off. I am beginning to regret arranging for work to be done in the house while he and Kate are away - but it was difficult to think of a better time. It'll be worth it, even though it means it won't be too peaceful around here for a few days. Can't sleep on, but plenty of early nights on the cards. Get this, I set my alarm for six today and slept right through it! Woke up at 7.31am. That has never happened to me since I began working for Missing People. Mad dash to work but what a great sleep! Uninterrupted. I am such a light sleeper and lately I've been waking early, even on my days off, and just getting up because I can't get back to sleep. I've gone back to filling my days with chores (believe me, there are plenty). Is this because my mind at rest can't block out unwelcome thoughts? Roch is often wakeful and I drift in and out of sleep. Sometimes he needs me to help him get out of bed, but not always. I don't feel my sleep is always restful. I feel 'on alert'. 
Having said that, bedtime is quite definitely our favourite time of day. Roch says that when we go to bed, he feels 'normal'. The DVD box-set currently on the go is 'The Sopranos' and most nights I tuck us in and we watch an episode before reading for a while. 

Anyway, tomorrow I'm all set for a real treat. A pedicure. There's luxury. I am not going to fill my day with chores. I am going to treat myself. I'll let you know how I get on...

A Change in Personnel

We were sorry to have to say goodbye to one of Roch’s PAs, Christian.  This is due in part to Roch’s increasing medical needs and in part to Christian’s ill health earlier this summer, which meant we had to seek a substitute perhaps sooner than anticipated. Having Christian on Roch’s team for the past year (yes, it is a year now) has meant that I have been able to continue to work part time and his punctuality, reliability – not to mention his availability at short notice – has given me extra free time and Roch companionship and help on numerous occasions. Christian stays in our lives as our dear friend and neighbour. We will always be grateful for his cheering and positive presence.

 

It was during my trip to Venice when Christian first became ill. At that time, Roch’s brothers were here to help in my absence but we were fortunate that by the time they returned to Dublin, the wonderful Mandy Garnett had come to our rescue. It was Mandy who brought Jenny into our lives.

Jenny is Roch’s new PA and I regard her as a Gift from God. No, Jenny, I will not spare your blushes. It’s not just that she is a nurse so that at one stroke all concern about dealing with medical needs disappears…or that she is capable, young, strong, learns fast…or that she is an excellent companion for Roch (she doesn’t take any nonsense), down to earth about the practical stuff and also sensitive to his feelings…or that she has a sense of humour and a sunny nature…or that she insists on going the extra mile to help me out with shopping, cooking, putting out the recycling, bringing in the washing…seeing to little tasks while I am at work. No, it’s because in an amazingly short space of time, Jenny has become part of our family. For the kids, she’s like a big sister, for me, an understanding friend. I know what you’re thinking. Nobody is that perfect. Well, maybe Jenny’s not perfect (I’ll let you know) but the important thing is, she is perfect for us.

A Busy August

The Trip Home


Members of the Maher Clan and friends gather at Mairt's house 

It’s been a busy August and I guess you could call it successful on most counts. Since we spoke last, we’ve been to Dublin and back, Tom has been accepted to Southampton University (loud cheers and clapping – ‘For he’s a jolly good fellow’…etc.) and we’ve had a change in personnel here. We also celebrated our 23^rd Wedding Anniversary by attending a League One football match!

Now if you’d said to me on my Wedding Day that for my 23^rd Wedding anniversary I’d be going to a local football match, I would have said ‘Forget the whole thing.’ But you know what? I had a good time. How things change in 23 years.

The Dublin trip went well, with everything slotting perfectly into place. The Irish MND Association came up trumps again. Back at the planning stages, I called our contact there, Tracy, to arrange for equipment loan (this year we needed more help than last, predictably). She it was who suggested I contact Muscular Dystrophy Ireland to enquire about the availability of their specially adapted apartment in Dublin’s pretty Chapelizod area. Unbelievably, they had a room with PA room attached vacant for seven nights in early August. They ask a nominal fee per night, per room. Each room is equipped with ceiling hoists, profiling beds and ensuite wet room. They do their best to make the rooms less ‘hospital’ and more ‘holiday’. The lift can be operated by a wheelchair user and the kitchen stove can be lowered for those who can cook. Kitchen and living room area are communal and we shared the facilities with a couple and their small daughter for the first few days. After that, we had the place to ourselves due to some cancellations. The place was a Godsend. Originally intended for people with muscular dystrophy only, it took them 20 years of fundraising to build. Now it is open to anyone with a neurological condition. For us it means we know we have a place to stay in Dublin for the foreseeable future. Chapelizod is an ideal location for us, situated more or less between the North and South sides of the river Liffey, so equidistant from Maher and Malone sides of the family.

Roch and the kids made the annual Maher family trip to the ancestral home in Tullarone, Co. Kilkenny, the Dublin Maher family get-together was held in brother Mairt’s house in Clontarf – even the famous poker game took place – Roch cleaned them out, I’m happy to report! The womenfolk made themselves scarce on poker night. Kate, Maura and I took the opportunity to go to the theatre. We chose Tennessee Williams’ ‘A Streetcar named Desire’ at the Gate theatre. Not a barrel of laughs, it’s true (what can you expect from Tennessee Williams?) but we couldn’t help identifying with Blanche and her sister, who were also refugees from the menfolks’ poker game – although our return to Mairt’s house was a little less dramatic!

 

The menfolk gather for the big game

 

The IMNDA had provided a ramp and also a commode chair for Roch to use in Mairt’s house. Another anxiety removed and something of a milestone passed (no pun intended…)

When our time with the lovely MDI people came to an end (and we could not have felt more welcomed by them), we moved house to the Gibson Hotel once again, where the IMNDA had once again come up trumps – a standing hoist was waiting for us in the room. We didn’t need this piece of equipment  there last year but this time around, we really could not have managed without it. Roch needed it to get off the bed, the toilet and the shower seat. Just for the record, the Gibson room for disabled? Perfect.

We stayed there for three nights and on night two, they kindly sectioned off part of the bar area for a ‘Gathering’ of our own with friends and family.

As Roch’s carer, I found our time in the Gibson most relaxing, but overall, just to get away was refreshing and profounding satisfying to prove that four years after diagnosis, we are still going back to Dublin in the summer, as we always did.

Many, many thanks to the IMNDA and MDI for making it possible – and thanks too, to Paudie, who shared the driving with me on the way over (we made it by the skin of our teeth onto the ferry!) and Mairt, who was co-driver on the journey back. Thanks guys, couldn’t have done it in one day without you.

A Thing of Wonder and a Joy Forever

Graduation Day!

It’s been a busy July and today I am completing final preparations for our annual trip to Ireland. This year we have even more stuff to bring with us and as space is limited in the WAV, Kate and Tom have travelled ahead. They flew into Dublin last Wednesday. Roch and I follow tomorrow with brother Paudie to help with the driving. Unlike the past two years, we intend to undertake the whole journey in one day. That way there’s only one unloading of the kit and caboodle and I think both Roch and I are just anxious to get there really. It used to feel very much like part of the family holiday, the drive to Holyhead and the ferry crossing. Now the journey ahead seems quite daunting.

However, we have had something of a trial run, as I drove the new WAV down to Exeter for Kate’s graduation on July 18th. What a wonderful day. We are so proud of her and I was pleased as punch to have managed the trip. A thing of wonder and a joy forever, for us all to be together at Kate’s graduation. It is one of those precious days which will live in all our memories. I don’t think we would have dared to have dreamt it possible back when he was first diagnosed.

 

Cheers! At the champagne and cupcake reception! Very Exeter...

 

The trip was not without its difficulties but I think Roch would agree that these were worth it to be there.

The main problem was pretty basic: washing. A couple of months ago, I booked two rooms at a Premier Inn outside Exeter.  I could have sworn that the last Premier Inn we stayed in had shower facilities attached to the ‘disabled’ room  – anyway to our great disappointment, this ensuite was equipped with a bath.  We asked to be moved to a ‘disabled’ room with a shower seat and appropriate washing facilities – but none of the disabled rooms could provide this. We were there for two days, in really, really hot weather. The least the proud father could expect was to be able to shower for the big day. A sponge bath and hair wash at the sink was hardly a substitute but we made do (as you do). Happily, having made a complaint about this – and also about the fact that the room had very little space in which he could manoeuvre his chair – and filled in an online feedback form which Premier Inn was foolish enough to send us a day or so later – we were given a refund for both nights for the disabled room. They have promised that our feedback has been fed back to Head Office and that hopefully, changes will be made.  We move on.

I had a few problems with the WAV – Exeter is very hilly and it really seemed to struggle on steep slopes. It may be the weight of the wheelchair but there were a few hairy moments as I crashed through gears and we crawled along.

However, it was all worth it in the end.

July began with Tom’s trip to Kavos (every mother’s nightmare). But he returned safely, just before I headed off to Venice, where I met my sister Maura for a six day break. In case you’re thinking that I abandoned my husband – I did not! I left him to the tender care of not one, not two, but three of his brothers (not to mention Tom, keeping a weather eye on Dad).  I knew that at any given time two brothers would be on hand and was dimly aware that there would be shenanigans and chaos in my absence. Frankly, my dear, I didn’t give a damn. Venice, as always, was enchanting , and I left it behind with many a backward glance of love and longing.

There are lots of memories for me there. I have been lucky enough to travel to Venice on a number of occasions over the years, but it is almost exactly three years this July since Roch and I went there together. It was on our bucket list. On that trip he needed wheelchair assistance at the airport, but managed with two sticks throughout our stay. Everywhere I was reminded of our time there together, but it didn’t make me sad. His generosity of spirit and loving heart made it easy for me to go back to Venice without him. He never made me feel guilty about it – I kept in touch via text and facebook and back in the London heatwave with brothers, friends and neighbours, he assured me that he was having a good time and looking forward to the cigars I had been charged with purchasing for him. He is truly one in a million.

 

Dignity in Dying

Last week we had a meeting with two people from Dignity in Dying www.dignityindying.org.uk

We met with their Senior Policy Advisor Davina Hehir and Press and Campaigns Manager Jo Cartwright.   Roch had made contact with their organisation, expressing an interest in becoming actively involved in their campaign for a change to the law around assisted dying in the UK. Both Roch and I are aware that this is a divisive issue and that feelings run high. However, I believe that a lot of the objections to changing the law are based on a lack of information about and understanding of the proposed changes and a very understandable reaction to scaremongering in the tabloids.

So, why does this organisation exist? Here I quote from the Dignity in Dying website, where they answer that question themselves:

“Why are we here?

We believe that high-quality end-of-life care should be complemented by the choice of an assisted death for terminally ill, mentally competent adults who meet strict safeguards and feel their suffering has become unbearable.

Without a change in the law, terminally ill people will suffer against their wishes at the end of life and will continue to make decisions without the advice of medical or social care professionals.

Those who can afford to will travel abroad for an assisted death, others will attempt suicide behind closed doors, some will refuse food and water to bring about their death, and far too many will ask family members and loved ones to help them die. All will be denied the choice of safe assisted death, in their own home, at a time of their choosing.

None of these options offer open and honest conversations with health and social care professionals and the only deterrent against abuse is the threat of prosecution after somebody has died. Assisted dying legislation would introduce up-front safeguards to check for abuse and coercion before somebody dies. In short, we want greater choice and greater protection for people at the end of life.”

Let me state here that Roch does not wish to die just yet and has no plans either to take his own life, or to request assistance to do so. But he would like to think that when the time comes, he might have a choice about how, when and where he dies and so he intends to get involved in the campaign to change the law to allow assisted dying (within the proposed strict safeguards) for terminally ill adults, who have the mental capacity to make such a choice. It is unlikely that the law will be changed in time for Roch to avail of it, should he wish to do so, but he hopes to be part of the movement for change for the benefit of others. 

I include a link to the Consultation document produced by the All Party Parliamentary Group on Choice at the End of Life, in partnership with Dignity in Dying. This sets out clearly both the present law, the proposed changes and reasons for the proposed changes, and the draft Bill. I can do no better than to refer you to this and ask that you read it before you make up your mind about the issue.

http://www.appg-endoflifechoice.org.uk/pdf/appg-safeguarding-choice.pdf

On 15^th May this year, Lord Falconer’s Assisted Dying Bill was introduced to the House of Lords. This is only the first step in the Parliamentary process.  At this stage, there is no debate. The long title of the Bill (indicating its content) is read out by the Member of the Lords in charge of the Bill. After this formal introduction, the Bill is printed. The next stage will be the Second Reading, which is the first opportunity for Members of the Lords to debate the main principles and purpose of the Bill.

As for Roch – don’t be surprised if you see an interview with him in one of the newspapers or hear him on radio – perhaps even TV. He intends to work closely with the Press and Campaigns Office at Dignity, to tell his story and explain why he wants to get involved.

 

 

Roch The Outlier

We had what I think of as ‘the biggie’ the week following The Brompton visit – his appointment with Professor Al-Chalabi at King’s College Hospital. For the second time, friend Gerry took time off work to drive us there. I really can’t put into words what an enormous help this is. It means I can relax and concentrate on the matter in hand and I’m not completely shattered by the time I get Roch home. Roch has the pleasure of spending time with one of his best pals on what can be a stressful day. Gerry is  very good company and I hope I’m right in saying that we all enjoy the journey there – and back again.  As we don’t have the WAV yet, someone has to accompany us, as I can no longer get Roch in or out of the Berlingo by myself. Gerry’s pragmatic approach and willingness to listen to Roch’s instructions make him an ideal companion and helper. The old manual wheelchair came into its own again. Man that ramp is steep! The days when Roch could get in and out of that wheelchair unaided are gone, fading into memory.  Anyway, not to dwell on that – when we arrived at the Neurology clinic I was disappointed to see that Professor Al-Chalabi’s name was not on the board. In fact, I later learned that he was attending the ENCALS (European Network for the Cure of ALS) meeting in Sheffield so I think we can let him off.

Professor Shaw did the honours. We have seen him once before and he makes a satisfactory substitute. Both are expert, professional and direct in their approach. Perhaps Professor Al-Chalabi’s manner suits me better. It’s hard to explain. He seems interested in an animated way – as if he might learn something new himself from Roch. It’s not that he gives me reason to hope but somehow I always feel more positive afterwards.  

Professor Shaw asked Roch if he objected to the presence of two students for the consultation. Roch never has any objections to this, as students have to learn I guess.  So we had two onlookers for the duration of the proceedings. Professor Shaw gave us a goodly piece of his time and was very willing to answer any questions. There really is very little they can do but answer questions and monitor his condition, which the Professor did with interest, given the slow progression of Roch’s ALS/MND, calling him an ‘Outlier’ meaning I suppose that he falls outside even the limits of their non-too predictable parameters,  making prognosis even less certain than with other, more ‘typical’ cases.   Roch again asked the burning question “Am I likely to die still able to speak?”   He had asked Professor Al-Chalabi the same question last time. Professor Shaw was perhaps more clinical in his response. “No,” he said, “Statistically, 95% of patients die having lost the ability to speak. But then, you are an outlier.”

Roch talked about the recent shoulder pain and resulting problems with transfers and he referred us to the physiotherapy team at King’s. We saw a physio there afterwards (more anon).

At the end of the consultation, he turned to me and asked me how I was. Even our hero Professor Al-Chalabi doesn’t do that. Admittedly I would have found it difficult to confess to a lowness of spirit or discuss anti-depressant medication in front of the student audience but it was nice that he asked. I was honest enough to say “It’s very hard.” After that, he asked if I still worked and I told him yes, and a little about the job, which effectively headed off any further probing. Sometimes, I don’t know how I am.

I’m not sure any more if that one is ‘the biggie’. I’m beginning to think that the Respiratory appointments at the Brompton loom larger and will be of more significance in the coming years. The next appointment at King’s will be in December, two weeks before Christmas oh my!

 

We see the physiotherapist

After taking our leave of Professor Shaw, we headed off to Physiotherapy. Roch has never had a great deal of time for physiotherapy in the context of Motor Neurone Disease, although he is always grateful for the efforts of the physios from Richmond Neuro Rehab. He’s pretty cynical about how much real help physiotherapy can be.  In all fairness, some of the most useful aids have come from them, such as the ‘foot-ups’ and the walking sticks and they give very sound advice about safe ways to stand and so on.

My first impression of the physio we saw at King’s was that she wasn’t listening closely enough. As the session progressed, I thought she became more focused. Her examination of Roch was gentle and seemed competent and there has been no discomfort resulting from her manipulations.  I explained to her that I was concerned about the way in which I was assisting Roch to get out of bed. With her in Roch’s place, I rather clumsily demonstrated my method and she agreed it was bad, for my back and his arm.  Because the bed rail is in the way, it’s really hard to assist him without pulling him up with his left arm.  She showed me the better way, which involves assistance at the trunk rather than the arm and advised that our local physio bring me through it again. This is a good idea, as the way she showed me didn’t take the position of the bed rail into consideration. So we will have to ask Amber to come up with a plan. Anyway, she advised that Roch continue on the anti-inflammatories prescribed by the GP as she said the inflammation in the right shoulder had not gone away.

The disappointing thing is that when we received our copy letter, the original of which went to the GP and Richmond Neuro Rehab, there were several inaccuracies – which proved that our first impression had been correct and she hadn’t been listening properly.  I suppose it doesn’t help my impression of her that I come across as a bit of a dimwit pulling at his left arm (she states that Roch reports ‘severe pain’ in the left shoulder. No, actually, the pain is in the right shoulder and that’s why we came to see you in the first place). Heigh ho. But yes, I do get that pulling at his arm is bad. Yes. Thank you.