In New York

In New York

Tuesday, 13 November 2012

The Team approach - and some calculations...

The care of a person living with MND involves a multi-disciplinary approach. That's what they told us at the beginning and in recent weeks, we have had numerous appointments with various members of Team Roch to prove the point.  We have calculated that the members of Team Roch now number 20 - this includes Christian and David, his two personal assistants, but excludes immediate and extended family members. I don't know how many people are on Team Andy Murray, but I would be surprised if their numbers could rival Team Roch.

As you see from recent posts, we've had contact with Occupational Therapist Shelley, from Richmond Social Services - who provided the hoist, an appointment with Neurology at the West Middlesex Hospital (more anon), and back to back appointments at Richmond Neuro Rehab Centre with Shahid (podiatrist) to discuss the fashioning of a splint for the errant big toe (Roch likes to say this has 'declared independence from the rest of his body') which he can no longer raise, thus making it practically impossible to put on his shoe, Amber (physiotherapist) about the shoulder socket pain and neck discomfort, Mary (nutritionist) about weight loss and diet. Jenny (OT from Richmond NRC) came to visit us at home. Amongst other things, we discussed with her the shoulder socket pain and whether this could be alleviated by a softer mattress topper. This poses its own problems, as it could make it even more difficult for Roch to turn in bed (already problematic) and it would have to be a single mattress, as a double wouldn't fit our kingsize bed. A single will be too big (I can just see myself with two inches of bed to myself, clinging on for dear life), but we discussed the possibility of tucking it in more on his side. We'll see how it goes. We don't need the hospital bed just yet and want to hold out against it for as long as possible. That will be a real turning point - getting rid of our double bed. But it's not happening yet.

Amber and Mary usually come to see us at home, but as Shahid needed to use some equipment in order to customize the splint, we agreed to go along to the Rehab Unit in Evelyn Road ourselves, as we used to do in Roch's more able days, and see everyone there. It proved exhausting for him and I couldn't help remembering the days when he could walk (albeit slowly) with the aid of sticks from Evelyn Road to a coffee shop on the Richmond road, where we enjoyed many a cosy chat. This time, despite his weariness, I rolled him along to have a snack there, as before. But there was a sense that the outing had taken too much out of him and it was a relief to get back home.

The most significant appointment was our meeting with Professor Al-Chalabi at King's College Hospital last Thursday. This time friend Gerry volunteered to drive us there. This offer was a Godsend as it meant I could relax, leave the stressful drive to someone else and concentrate completely on our appointment. (Hospital transport is available, but only for Roch, which means we can't travel together, and synchronising our arrival both to the hospital in Denmark Hill and home again makes the whole experience rather too stressful).
Although Professor Al-Chalabi cannot give us good news (we don't expect this), his professional expertise, the depth of his knowledge, coupled with the respect, space and time he gives to Roch, always makes visits to his clinic worthwhile. You do feel safe in his care. Although this visit left us a little bit more emotionally bedraggled.
He told us that he judges Roch to be in Stage 3 of the disease. We were somewhat puzzled by this, as he hadn't mentioned stages before. He explained that there were 4 Stages, Stage 4 being the final stage. This was a bit of a sickener, actually.  He followed it up with telling us that by his reckoning, being in Stage 3, Roch has travelled 60% of the journey. I felt myself pale, and a chill went right through me.  For some reason it all suddenly felt horribly real. I actually had no idea we had travelled so far. Of course we had noticed his deterioration over recent months but I had somehow succeeded in deluding myself into thinking that we weren't really that far along the way. We made some calculations as Gerry drove us home - if he had the first symptoms in - let's say December 2007, and that's five years ago - and that's 60% of the journey - well, I'll leave you to do the Maths yourself. On the surface we were all businesslike and brisk about it, but underneath I know I felt gut punched.

Roch asked Professor Al-Chalabi how likely it was that he would die still retaining the power of speech. His answer was clear - if the diaphragm muscles go first, there's a higher probability that speech will be retained to the end - if the throat and mouth muscles go first - well, you get the picture. It makes sense. I guess now we wait and see. There are no guarantees.

What we like about Professor Al-Chalabi is the fact that he answers our questions directly. That suits us. No doubt he tailors his approach to suit individual patients. But at least you get answers in a sea of uncertainty. At the West Middlesex they do their best, but their best is to monitor his decline and we are lucky if we come away with more than an admonition to 'stay positive'. Yes, well. That's easy for them to say, and as a matter of fact, I think we do pretty well most of the time. Lately it's been feeling a bit more difficult, but we've had blows before and we've recovered from them. A good antidote is planning for pleasure, I find, and with Christmas just around the corner, there will be plenty of opportunities for partying and good cheer. Now if we've come through 60% of our remaining Christmases, and that was five Christmases - how many Christmases are left?

Thursday, 25 October 2012

Of men and hobbits

I've been lucky. Richmond Carers Centre offered me twelve weeks' free counselling a while back. I had the last session a couple of weeks ago and I really found it helpful. There has to be someone to listen - not family, not friends - someone you don't have to look after, who will focus on you and take what you say and feel - and make sense of it. Eve did that for me. Roch often tells me, joking, 'It's all about me'. Well, of course it is and that's as it should be but how refreshing to be the focus of attention for a good 50 minutes per session, as I was with Eve. It's a powerful experience, and one that is often underestimated - to be heard, and to have your feelings acknowledged and understood.

I thought I was being so time efficient, arranging my final session for midday - fitting it in before a late shift at work. I was feeling fragile. In fact, to quote a very famous Hobbit, I was feeling 'Sort of stretched, like...butter scraped over too much bread.' The weekend had been all go, my days off full and I hadn't arranged any time for myself - by myself.
Anyway, Roch's personal assistant David arrived - Roch was showered, dressed and ready and so I set off. The first inkling I had that something wasn't quite right with me came as I was parking the car. I watched a woman walk down the street with a confident stride, swinging her bag. She looked - how did she look? She looked happy. Happy and in control. Just about the opposite of how I was feeling, in fact. Whether she was or not, is immaterial.  Suddenly I realised that I was feeling very shaky indeed. My eyes filled and in fact I spent a lot of the subsequent session in tears. Together Eve and I worked out why. Well, it's not rocket science, but sometimes it's hard to work out the why by yourself - and it can feel very scary to feel overwhelmed by strong emotion without quite understanding where it's coming from. Eve helped me to see that I consistently successfully push down all the emotion I'm feeling, in order to cope day to day, so it's not surprising that eventually it all comes bubbling up and I can't stop it from overflowing. Sadness, anger, grief. I have to allow myself to feel it to get through it. If I don't take time for myself, to look after myself - this is what happens. It's not the end of the world, but it does mean that I just have to STOP.
Here I had been rushing around doing everything for everybody for days without stopping for myself and without taking time to get in touch with my feelings (to coin a useful Americanism, now don't laugh). The result was a gibbering wreck. Well, perhaps not gibbering, but certainly unable to function normally. For only the second time since Roch's diagnosis, I knew that I just could not face work. (The first time was the day after we received the diagnosis). 
I called my line manager and tearfully explained. She was very understanding. She asked me if there was anywhere I could go, someone I could be with. But I didn't want to be with anyone.  I didn't want to go home and anyway, I wasn't needed there. Happily it was a bright, sunny autumn day so I donned my sunglasses to hide my red and swollen eyes, took a few deep breaths and headed into Richmond. I felt a bit lost and wandered round rather aimlessly before conceiving the notion to go to the cinema. This idea brightened me up considerably and I had lunch al fresco on Richmond Green, bought some clothes and started to enjoy myself! I felt like I was playing hookey. I had never been to a film alone before and found it very liberating. I chose a film I thought wouldn't interest Roch much (so he wouldn't feel he'd missed out) called 'Hope Springs' about a couple undergoing intensive couples counselling. It was billed as a comedy/drama but I was interested to note that of the audience (which consisted of two middle aged straight couples and a duo of young women - and me) - only the men ever laughed.  That tells its own tale. The film was most enjoyable, by the way.
It was only the other day, when Roch and I were deciding which film to go to next,  that I mentioned my lone cinema visit to him. I think my expression may have been rather hangdog, but I think he was glad I told him, and that I'd had some time to myself.

Tuesday, 23 October 2012

Roch 'n roll

It's been a bit of a mixed bag lately. On the plus side, we've been getting out more. A successful trip to the cinema in Kingston to see 'Looper' means, I think, that we can look forward to many more. Now that I am working fewer shifts, we can schedule our trips for weekday showings, when it's less busy. Roch has been making a big effort to get out. It's not easy, he's lost a lot of confidence. I was touched by a remark I overheard him make to a friend - he said 'Deirdre's courage gets me out.' I was proud to hear him say that - and it does take courage to get out, but it's so much harder for the guy in the wheelchair. He's making a great effort to get himself out to watch Brentford FC play - he's building up to the Emirates!

Ironically, just as Roch steels himself to face his fears and get out more, something changes. For a while now, it's been difficult for him to stand up from the toilet without someone helping - just one person helping has been fine and I have always been able to assist. But the weekend before last, we had a problem. I couldn't do it alone. It was okay over that weekend, because Tom was at home, so between the two of us, we managed, but what were we to do on Monday? Roch's solution was not to eat anything all morning - well, that clearly wasn't going to work on a long term basis, so we called Shelley, our OT from Richmond on Monday morning and she came out to see us on Monday afternoon. Imagine our relief when she listened to our sorry tale and then simply told us "What you need is a standing hoist." I never thought I'd be happy to hear those words. She had it all organised within two days and we now have another piece of equipment - but what a piece of kit. It has become my new best friend. Me and the Hoist. BFF. Introducing - the Oxford Journey....

Oxford Journey, The compact portable folding Stand Aid

--> The Oxford Journey is a fantastic standing aid and is an essential tool for those who depend on a hoist for their sitting and standing needs.
This new hoist incorporates the latest design technologies to make this one of the most compact and portable, folding stand aids in the market today. It is easy to store and transport as well as maneuver and has an SWL of 24 stone.

Speaking of journeys, we actually made it to a gig on a Saturday night a couple of weeks ago, at the Six Bells in Brentford - despite horrendous service from Com cabs we got there at last (Brentford County Massive waited for us to arrive - thanks guys x) and the return journey wasn't much better. Roch, sitting outside the pub at midnight calling them on his mobile - 'Where the hell is our cab? You said they were five minutes away..!' You get the picture. We got home eventually, but it was a dismal service. However, it didn't spoil our night.

Brentford County Massive groupies Carolyn and Devorah with me in the middle!

 Rob rocks it up

Thursday, 4 October 2012

Hammersmith bids farewell

Waiting for his guests to arrive - what's that? Mineral water? Shurely shome mishtake!

The back room of the Egerton pub in Hammersmith was packed last Friday night, crowded with LBHF staff, past and present, Roch's ex-colleagues and friends, Union comrades and some representatives from other organisations - old adversaries included. They had come to pay tribute and to make their farewells. But it wasn't a sad occasion. In fact, it was the best kind of party. Tables groaning with platters of delicious food prepared by a group of his (female) colleagues (a separate table for desserts!), plenty of booze available, and a room brimming with friendship and goodwill. It was, in fact, a typical Roch party. Around us I saw people greeting old friends with delighted hugs - catching up, exchanging news - a buzz of conversation, laughter and memories surrounded us. Roch makes friends like nobody else I know - and never hesitates to bring them together. All are welcome - especially down the pub!

There were speeches from Zahra, Roch's long suffering (and charming) line  manager, Glendine, bravely representing Senior Management, Jonathan Hextall, former Union stalwart - the 'Elder Lemon', who recruited Roch to the Union twenty two years ago and of course, a speech from Roch himself.  There were plenty of jokes about Arsenal, beer and how argumentative Roch can be (what? our Roch? Never!), but the room was silent as Jonathan described Roch as
a Man of Integrity, and went on to say that it was Roch's sense of social justice and his determination to remain impartial, to give everyone a fair hearing, that will be remembered - that and the fact that where Housing Law is concerned, everyone agrees that Roch is an absolute fount of knowledge. No-one to come to now with their questions, I'm afraid. They are gonna miss that.

He is overwhelmed by the generosity of the gifts he received from his LBHF colleagues - a huge sum in vouchers for IT equipment, a most excellent bottle of Prosecco - and a handsome pewter mug, which sports the following engraved message:

Dear Roch
from all your friends
who have loved and
worked with you over
the years at

This is not including the individual gifts so many people brought along with them.
I can do no better than share with you some of the photographs from the evening - I hope they convey something of the atmosphere. Roch and I will certainly never forget it.

Special mention goes to Catherine, who managed to elude capture in any photograph (!) and Terry, friend and Union comrade. Catherine, for her quiet behind the scenes management, the production of her legendary Victoria sponge (amongst other culinary delights) and her hard work with the rest of the 'food committee' on the night. Terry - for so many things, but mainly for always being there.


With our dear friend Dympna, who did a fantastic job as photographer on the night.

Union Comrades! From left, Jonathan, Terry, Julia and Krissy
Barbara and June

Barbara, June, Catherine, Farah, Shelley, Carolyn, Sheron - thanks for all the delicious food and hard work on the night!

Top picture: From left, Florence, behind Roch - John and April. At the back, Dave and Clive.
Bottom picture: Shauna, Angela, June and Farah.

Posing with gifts

Thursday, 27 September 2012

An unconventional approach.

As this illness progresses, there are times when it feels like Roch engages less and less with everyday life at home. He is, quite naturally, obsessed with his condition and he admits as much. Why wouldn't he be? His thoughts revolve around what he can no longer do, what he may not be able to do tomorrow. He seldom dwells on the powers that remain to him.
He tells me that he feels helpless, that he's useless, that he sees me doing everything and he can't do anything to help me. This is not how I see him. I tell him that he is not completely helpless yet, that he is a very powerful person. His mood and attitude deeply affect everyone else in the house. He underestimates the power of his presence and opinions. And besides, there are ways in which he can help. He can listen to me when I come to him with a problem, he can enter into a meaningful conversation with me and we can discuss how to manage things together. No, he can't go up to the attic or move boxes, put out the garbage, trim the hedge - but he can use the phone, he can talk, he can use his I-pad and laptop  - if he wants to. I try to involve him in things, not just to make him feel useful but because I NEED him to be involved. I am not ready to take over everything just yet.  We were always a partnership. Actually, I don't think he would want me to take over. So, do household matters seem trivial to him now? Or is he too depressed to take an interest?

I think maybe now that we have Personal Assistants to help, his dependency is harder for him to bear. It's one thing to have your wife carry out intimate tasks to assist you with daily living, quite another for someone from outside to do this. He is still adjusting. One of the contracted tasks is to assist with showering and dressing, but he's not ready for that yet. So he either has no shower on the days when I'm on an early shift or he showers in the evening when I come home and can help. He did suggest that he get up at 6am with me on those days so that I could help him shower before I left for work but I had to be honest with him, it felt like too much for me. That's why we need Personal Assistants, so that on my working days, I don't have to do it. It was hard for me to say no, but I felt that in making the suggestion, he showed very little understanding of my needs. So, I asked myself, is it unreasonable for me to expect this from him?

Before publishing this post, I took the rather unconventional approach of emailing a small questionnaire to Roch. Why? Well, it just felt easier than asking him directly. He is always open to responding to questionnaires from outsiders, seeking to understand his condition and how he is feeling. I was confident that he would respond to mine. The results were interesting and led to a heartfelt discussion, although time will tell whether we reached a mutual understanding of each others' needs. His response to my Question 1 was particularly fascinating as his answer showed me that his disengagement may be caused by feelings of powerlessness, but I also felt that to a certain extent he had missed my point! We talked about that, too.
He told me that he feels like a 'Waste of Space' and I don't think any amount of reassurance from me will change that feeling.  At the end of our discussion we talked about the possibility of counselling for Roch. He is considering this. He admits to being depressed. I'm not sure how I feel after this exercise - I think it was useful for both of us and it felt like something I had to do. I hope it makes a difference.

 With Roch's permission, I record the questions, together with his answers, below:

"I am writing a blog post and wondered if you would mind completing the following short questionnaire?

1) We have talked about how you are obsessed with your illness. We have agreed that this is understandable. So - Do household matters seem trivial to you now?    
No, Even the smallest task seems monumental now...

2) How do you feel when I ask you about household things like insurance/personal assistants matters? Please tick the most appropriate answer.    

a Irritated - why can't she deal with it by herself?    
b Annoyed - I've got more important problems to worry about.    
c It makes me sad, because I don't feel I can help.    
d I feel too depressed to take an interest.    
e All of the above.

The answer to this question varies depending on mood, time-of-day, the task I'm currently obsessed with (most particularly my current toilet obsession), my startle response (which appears to me to be getting worse ), my prevailing feeling of helplessness/pending disaster and/or a combination of all of the above. More specifically, probably answer (c).

3) Do you think you might be depressed in general?

Yes, however, I'd like to point out that I have only come to this realisation today.

4) Do you think that you are angry with life/fate/the universe?

⭐ Absolutely.

5) Do you think it is unreasonable for me as your wife/carer to expect you to understand my needs?

No, I'd hate to think that this was possibly the case.


6) How odd do you find this exercise?

a Very Odd      b Odd c    Not odd at all     d Normal

Fascinating, but if pushed for a specific choice of the given alternatives; (b)... Albeit very tentatively...."

Saturday, 22 September 2012


The MND Carers Support Group meets on the third Monday of every month, in Richmond Oddfellows Hall. I've talked about it before in the blog, but I think it's worth mentioning again.  Last Monday I was late and was the last to arrive. No sooner had I taken a seat, than Mick had risen from his own to make me a cup of tea. It's like that, very welcoming and distinctly non-threatening. It's still in its infancy - there is no fully formed group, there are new faces there every time, and some familiar ones too, for me. One participant told me she felt like she knew me and my family well - because she had been reading the blog!
Each meeting is facilitated by two volunteers (one of whom is usually Mick Stone, who set up the group). Janis Parks was there on Monday. She is the Chair of the West London & Middlesex Branch of the MNDA. Having them there makes it feel safe.  I was nervous at the beginning because at my very first Open Branch meeting I had felt overwhelmed by the emotional needs of other carers. This was something I fed back at the time and spoke to Mick about, too when he asked me whether I thought a Carer's Group was a good idea.  He assured me that the meetings would be managed and that they would be facilitated by two people. It works for me.
Monday's meeting was held to the background noise of a tap dancing class being held upstairs. It was a little distracting at first, but kind of cheering at the same time. I think we managed to block out the noise eventually. The ballet class afterwards felt less intrusive - a kind of dusty, muffled shuffling. There was something life affirming about holding our support meeting to the sound of people learning to dance. Life's rich tapestry...
Certainly life's rich tapestry was reflected in the experiences of the Carers present. We all had an opportunity to talk about our own situations and how we were feeling. As always, it feels much easier to talk about the people we care for and to ask for suggestions/advice on practical matters from our fellow carers - rather than examine our own feelings and how things are for us as individuals. Maybe it's because we're not used to each other yet? Maybe it feels like that might open up a bit of a Pandora's box and we're not ready for it? I don't know the answer. Time may tell. There was a general acknowledgement of a shared feeling of frustration -of  the difficulties faced when dealing with professionals who don't understand, who dismiss the Carer's input - hospital staff and occupational health therapists alike. An affirmation from people who do know what it's like - fellow carers - that we are all doing the best that we can. Encouragement to continue.

I found it helpful to hear that other Carers sometimes feel irritated by the unceasing demands made on their time - irritated and resentful, even. I share those feelings sometimes. We all agree that breaks are important and that when respite is offered, we should take it. It's hard to be patient all the time.

When Roch was first diagnosed, a close friend confided that what she would find difficult would be not feeling able to shout at her husband when they had a row! I told the group on Monday that we still do shout at each other - like any healthy married couple. I told them the tale of a recent row - during which Roch said to me "Try to think of me sometimes." Or words to that effect. This remark elicited a most satisfying response from my fellow carers, who howled with appreciative laughter, knowing that it would have been impossible for any of us not to respond to such a remark. As I said to them, "Every waking moment..." I didn't even have to finish the sentence. After the row, I went for a walk - Tom was at home with Roch, so I knew he wasn't alone. I was also acutely aware that I was doing something he was unable to do, and I couldn't help feeling bad about that.  I could just up and leave - walk briskly down the road to get some space. Well, as Janis remarked, one of us had to do it.

It's good to know you can sit with people who understand, chat over tea and biscuits and have a break for an hour or two. I left feeling that I had spent an evening with friends. That's a good feeling.

Sunday, 2 September 2012

Home sweet home

Well, we have been home for a full week now and whatever holiday glow attended our return has definitely dissipated at this point. Just one day home and he had a fall. It was Sunday and I had gone out to Tesco. He slipped in the wet room. He banged his head, arm and behind - but nothing broken, no major damage. By all accounts, Tom was brilliant but it must have been a shock for everyone (especially Roch).   Roch can just about get himself up from the shower seat (which Tony raised for us before we went to Ireland) but last Sunday his feet just slid out from under him on the wet floor and once down, he cannot get up.  As I left for Tesco, I had a momentary doubt about leaving him. He was just finishing his shower and Tom was on hand to assist. It probably would have happened if I'd been there, but should I have listened to that inner voice of doubt? - After all, he hadn't used our wet room for three weeks. Was I in too much of a hurry to get out and back with the food for dinner? On the other hand, what kind of faith would it have shown in Tom, to insist on staying? Neither of us could have prevented it from happening. Tom and Kate did all the right things and with the help of Kate's boyfriend, they managed to help Roch up, so they didn't need to call an ambulance. We have since tried a non-slip bathmat but it doesn't work really, not on that floor. We've been using a towel/mat which is better and Roch ordered some crocs to wear in there in future.

He can 'just about' do a number of things and I think we're both wondering how long this stage will continue, which may be a gloomy thought, but natural I think. It's great that he can still do things for himself, but it's hard to feel grateful sometimes for these feeble abilities, although no doubt when they disappear I will look back with nostalgia and longing to the days when he could 'just about' do something.

He has to adjust to retirement now, too. We both do. He is officially retired from work, although very unhappy about how this was managed by his employers. I don't think they've heard the last of it. Dr. Cable has written to the Chief Executive of Hammersmith & Fulham Council once more, on Roch's behalf.

We are entering another phase - a real milestone - where we will employ other people as personal assistants, to be at home with Roch and help him out whilst I am at work. Two of our friends will take on this role, which we hope will begin on 10th September. This is when my new shift pattern will start. We have been advised in this by Paula, of RUILS which provides an invaluable advice and support service, making the whole employment process much easier for us to embark upon. There's a lot to think about.

Over the next week we will draft a job description to reflect the support plan already agreed, a contract for each, organise insurance and activate the direct payments scheme. It feels a bit daunting, but once we get down to business, it will feel good to have everything organised. I hope it will set my mind at rest when I'm at work.  I hope having friends as personal assistants will make the adjustment easier for Roch.

Friday, 31 August 2012

Final notes from travel diary

20th August, Monday.

"Gerruup-ouravit'!"* Ah the dulcet tones of the Dublin pedestrian as he aims a passing kick at a car, whose driver has had the bad judgment to break the lights at the quays at O'Connell Bridge, finding himself suddenly surrounded by a menacing crowd. Dublin, in the rare 'oul times.  Roch and I are negotiating the still familiar city centre streets, having braved the Luas (tram line) to Abbey Street from the Gibson Hotel, where we are booked in for the remainder of our stay in Ireland, when we witness this scene, much to our private amusement.  I was worried about using the tram but it posed no problem - it's at pavement level so wheeling the chair on and off is easy and you're straight onto the street, no steps to negotiate.    

Roch at the Gibson
It's just the kind of hotel Roch likes, sleek, modern and with an understated luxury. I sound like a travel brochure! It's the ideal venue for us, as it's situated smack bang between Northside and Southside, making it convenient for visiting family and friends, from both sides of the Liffey. The idea is that they can come to see us here - which makes it far less stressful for both of us. Before we went to Kerry, we made sure the hotel facilities suited - we had to check the height of the bed, the bathroom/toilet etc. It checked out, and the hotel staff could not have been more helpful. We still have to use the trusty toilet raiser seat, but the bed is high enough and we don't need the toilet frame as the grab rails provided are sufficient. We do need the perching stool, as the shower seat is too low, but we expected that.
The bedroom is an oasis of quiet and calm and on our return to the room - even after a relatively short visit to the bar/terrrace for coffee and cigar - it has been transformed in our absence, bed made, bathroom spotless. Now that's luxury.

Many thanks to Fiona, who thought of the Gibson in the first place, Maura who accompanied her on the first reconaissance mission - and to my mother, who gave us our stay there for our 22nd Wedding Anniversary present.

*Translation from Dublinese = Get up out of it.

21st August, Tuesday

The Gathering of the Clan

I guess you could call this the gathering of the clan of cousins, as we had another Maher gathering for breakfast on Sunday, at Mairt's house. There sisters, brothers and various offspring came together before those lucky enough to have tickets to the All Ireland Hurling semi-final headed off to Croke Park for the match, Roch, Tom and Kate amongst them. Today Roch and his brothers and sisters travelled to meet their cousins - presiding over them all, the man who married us - Roch's uncle and namesake, Fr. Roch. It's becoming an annual tradition, this year kindly hosted by Anne and Chris.

Roch with Fr. Roch and Eoin


Wednesday, 29 August 2012

A bracelet of days

I picked up a 'poetry postcard' in the Dingle Bookshop.  Written by a Dingle poet, it feels like it was written for me.

A bracelet of days

I am making a bracelet of days
or bits of days
to take out in the half light
and know those other times were real.

The first stone threaded on is blue:
A dusky drive
through low flat fields,
that held the promise of home.

The second one is the gold
of candlelight in a night-time
chapel where four musicians

The third is clear as water:
Words plucked
from a poet's mouth
to flow into my ear.

I am making a bracelet of days,
moments stolen, frozen,
threaded into a talisman
to scare away those half-light days.

Emer Fallon 2007

Notes from Travel Diary cont'd

17th August, Friday.  Dingle.

This week has passed quickly. The kids have been swimming most days. Roch is happy about that, he wants them to continue to do the things they have always enjoyed on our seaside holidays together. Through the years on our visits to the West of Ireland, an important feature of our family holidays there was the daily swim. Roch was the instigator and facilitator of this tradition. The last holiday in County Clare was August 2010 and that was the last time Roch went swimming in the sea. It's hard for him now, not to be a part of it. So yesterday I suggested that we spend a family day and do things together that Roch could enjoy, too. We drove to Ballyferriter, scene of many Maher outings in the past, and had lunch in one of the local pubs. It was a relaxed and enjoyable meal and we took our time about it.

Maura and Roch in Ballyferriter

 Next stop was out the road to the Louis Mulcahy pottery workshop and shop, where Roch and Tom soon lost patience with their womenfolk, as Maura, Kate and I took our time to decide between various very beautiful pieces. You can watch the potters at work there. This youtube video will give you an idea of the quality of the work and the beauty of the surroundings:

Decisions were eventually made and we loaded up our booty and headed off to Dunquin, to the educational stop on our tour, the Blasket Islands heritage centre. It's worth the visit, although I have to ask with regard to quite a lot of the great literature that came out of the Blaskets - does anyone else find those voices from the past ever so slightly whingey?

Good moment having watched the video which informed us of the tremendous community spirit amongst the islanders - only to spy a quote from one islander who complained that when building his house, he got no help - neither brick nor mortar was handed to him...

Roch's brother Mairt and his wife Sheila joined us in the evening and we headed out to a local amateur dramatics production of the comedy "Moll" penned by the well known Kerry playwright, John B. Keane. There was a step at the entrance to the venue and as we joined the queue for tickets outside, I shared Roch's anxiety about getting the wheelchair in. No ramp was available but having alerted the organisers to our dilemma, tickets were purchased and the wheelchair was basically lifted in over the step. Seats had been kindly reserved for us at the front, with a space for the wheelchair. The only thing to mar my enjoyment was the extraordinary cocophony of sounds which issued from my stomach - a legacy I believe of the rhubarb crumble I had so carelessly chosen at lunch time for dessert. Honestly, I swear that Moll was more than once put off her lines by the loud and embarrassing rumblings. Certainly the small child seated next to me cast some startled glances in my direction. At the interval I swapped seats with Kate, so that I was seated between Kate and Tom to spare my young companion further trauma, but I am happy to report that things settled down eventually!

We waited for a while afterwards for the crowds to disperse and as we waited, a young man approached me. I think he must have been despatched by the organiser to assist us with the wheelchair. I watched the care with which he carried out his part in the operation, and was touched by the gentleness with which this stranger lifted and placed the chair on the ground outside.

After the play we headed back to the cottage together, where we stayed chatting until the early hours with Mairt and Sheila - Sheila regaling us with tales of the filming of Ryan's Daughter (Dingle is Ryan's daughter country, after all) of which she has first hand knowledge - having been in Dingle as a mere slip of a girl around that time.

All in all, a good day, yesterday.

Tuesday, 28 August 2012

Notes from Travel Diary

Wednesday 14th August. Dingle.

Fifth full day here and after initial disappointment on arrival, it's all working out much better than expected. Roch, Tom and I got here on Saturday about 4.30pm. We had gorgeous sunny weather all the way from Dublin to Tralee, but hard rain followed us from Tralee to Dingle. As we stretched cramped limbs in pouring rain and surveyed the scene, Tom and I soon realised that the cottage was not as accessible as advertised. We faced a steep incline up from the parking area to a path which leads directly to the cottage door. The gradient is clearly unsuitable for wheelchair access. The next day we worked out a better place to park and a better way to get Roch in - although not ideal, as the pavement is not dropped at any point, and the path is still quite steep - it is much safer than the path which leads directly from the main car parking area. Anyway, our first impression was not good and after a rather hazardous push (Tom pushed the wheelchair, I pushed Tom!) up the hill, we made it into the cottage. We felt rather better having established Roch inside and braved the elements to return with mouth watering fish and chips from the village. It didn't stop us devouring Maura's delicious pasta dish later! Kate travelled with Maura and they arrived at the cottage a couple of hours after us.
Thank God for the ramp, supplied on loan from the Irish MND Association. Without it, there is no way Roch could have access to the patio area, as promised, for the ritual cigar. The riser recliner chair and toilet frame arrived on Monday and greatly add to Roch's comfort here.

The view from the cottage

Sunday saw us renewing acquaintance with Lerick A and his small daughter Angie - it will also live in my memory as the day of the endless ham, which took forever to cook - although we couldn't have managed at all without the pot supplied by Lerick's fear an ti*.  Lerick and Angie accompanied us on our hair raising 'spin' around Slea Head in the afternoon, as Roch was anxious to re-visit the old haunts from bygone Maher family holidays and we drove to the Winestrand, scene of countless swims in the pitiless cold seas - hardy youngsters - where a voice from the past hailed Roch - I ask you, first full day in the place and we meet someone who knows him! Great to see you again, Mairead! The first drive was to be a mere shadow of Roch's 'Memory Day' to come on Tuesday, when Paudie organised the tour proper for Roch, their sisters Mariannne and Laura, and his wife Ger. A real trip down memory lane and a great day out for them all. A hot, sunshiny day, with plenty of laughs mixed I think with a good deal of nostalgia.

Muireach - the old house
Lerick stands guard in the Dingle rain as Roch enjoys a cigar

Maura, Tom, Kate and I headed off on a boat trip to see the famous Dingle dolphin. Funghie did not disappoint and showed up on cue to entertain. Afterwards, we headed to the Winestrand where I surprised myself by braving the freezing waves. I don't think I really warmed up again until after the family meal at the Skellig Hotel - ten of us gathered together to celebrate the occasion while Maher memories were shared.

We were expecting hurricane weather today and it's been windy and showery, but no hurricane so far. We have a magnificent view of Dingle bay from here, right out on the patio. A quiet day. I think Roch is tired after all the activity yesterday. I took a walk into the town and enjoyed a bit of solitude, even the rain didn't bother me. But as I trundled round the damp streets I felt myself becoming heavy hearted and experienced that peculiar detached feeling I get sometimes when alone and not distracted by conversation or the company of others.  In Dingle bookshop as I stood at the counter, waiting to make my purchase, I was aware of the presence of other customers and watched their interaction with the bookseller as from a distance, although standing close to them. Like an actor in a play, or like watching somebody else play the part of me. Later, a meaningless conversation with  a heavily pregnant young woman in a Chemist shop - what product would be best for brittle nails, we pondered. I felt like a pretender, in fact, I was pretending - actually I couldn't have cared less. 

*fear/bean an ti = literally translated from the Irish it means 'man/woman of the house' but used in common parlance meaning the proprietor of a guest house.

Wednesday, 22 August 2012

#The first time ever I saw your face

 Notes from travel diary

8 August, Wednesday

Well, I did it, I got them all from Rydal Gardens to Dublin, with the help of three sumatriptan  and a good deal of prayer. I drove all the way for the first time ever and managed it beautifully with the support of my two lovely children and Roch’s navigational expertise.  (There was one hairy moment outside Wrexham when my hay fever eyes began to water so much I had to pull in for eye drop treatment), but was soon recovered enough to drive on to the Premier Inn where we spent the night before completing our journey.

I am writing these notes from the guest bedroom in my brother’s house in Dublin, where I take a moment to breathe a prayer of thanks and close my eyes, settling into the fresh, crisp sheets with relief.  Dermot and Maura have done an excellent job raising the bed for Roch and he is settled comfortably downstairs with an extra mattress on the sofa bed. He can get in and out of bed by himself. If he needs me he will text. Last year we had no need for an extra mattress – but we knew there had been changes.  There would have been no getting him into Mammy’s house without the ramp – so many thanks to Tracy at the Irish MND Association. A ramp was waiting for us there on arrival. The gradient was a bit steep but we managed. Perfect for the step at Dermot’s house. It’s pretty heavy but it does the job. Hopefully all will be well in Kerry. I know he’s anxious about being out of his comfort zone. It’s hard for him. Thank God we brought the toilet raiser seat, as well as the toilet frame. What a piece of kit. The moment I fixed it to the toilet seat at the Premier Inn in Wrexham I breathed a sigh of relief. It would be okay, and that certainly dealt with one of Roch’s major anxieties. It will be an essential piece of equipment, wherever we go on this trip. It is so much harder for him to stand from a sitting position now. I wonder how far we are from hoist time?

I relax and put in my earphones.  Alison Moyet. At once a rush of memories threatens to overwhelm me. Dublin is the place of the young Roch, always on the move, sexy as hell, the Roch of the wink that made me go weak at the knees, he of the tinted glasses and the soft leather jacket – pulled into his strong young arms, held against his lean body sharing stolen kisses all those years ago. Oh the dizziness of that first kiss.

“The first time ever I saw your face…I thought the sun rose in your eyes… and the moon and the stars… were the gift you gave, to a dark… and empty sky.”

Sunday, 15 July 2012

Meanwhile...of great things and small.

So I wake up last Sunday night and my back is in spasm. I suppose it’s not surprising. There is a theory that stress will do that to you. But I also know I did something to bring it on. I can’t exactly remember what that was, but some awkward movement, some twist and pull finished it off. The upshot was two days off work and a visit to my physiotherapist. So, he tells me my pelvis is out of alignment and one leg is longer than the other.  I have been advised by a colleague to acquire a parrot. Thanks Susan. Exercise is good – walking especially. Some gentle back exercises. No Pilates for the moment (actually I haven’t been to Pilates in ages) no massage – that would be the wrong thing. There is lots of inflammation, so I have to wait for that to go down. It’s getting better and I went to work on Friday. It was painful to drive, but I could actually do it. I couldn’t have driven on Monday, that’s for sure.
Anyway, it gave me a fresh insight into one aspect of Roch’s condition. When you can’t do things for yourself and you have to rely on other people, it’s hard. No bending down, no lifting, no reaching or stretching. You’d think I’d be grateful as it meant there were so many jobs around the house that I couldn’t do. But I just found it frustrating to wait for Tom or Kate to do them instead and I certainly don’t have Roch’s patience, as he waits for tasks to be carried out for him. We were like two unfit ninety year olds this week, shuffling slowly and painfully around, easing in and out of chairs.  

On Thursday the lovely Shelley (Occupational Therapist) arrived with someone from an equipment supplier, so that Roch could scope out a new piece of equipment – planning for the future. There we were, as I say, like two ninety year olds, gazing at what was basically a hospital commode in our living room. Of course, it makes sense.  Before a hoist is needed, we’ll need to be able to shift Roch onto a moveable toilet frame and it was important to take measurements and discuss requirements, including add-ons for different stages (like neck support). They are ordering a commode frame which can be wheeled over the bio bidet, or used with a pan in the bedroom, or used without the pan to wheel Roch into the shower.  It makes perfect sense and still we gazed in a kind of depressed disbelief. I’d say it felt like we were practising for old age, except it isn’t, is it? At least, not in Roch's case. Funny, an acquaintance asked me how my husband was recently and then told me that she’d watched a programme about the care of the elderly. She said it made her cry. I looked at her for a moment. I saw how she had made the connection, but it still made me cross.  I told her “Roch is 50.”

Anyway, Shelley was lovely and made it much easier to contemplate and discuss the use of commodes. I’m not sure her companion was quite prepared for Roch’s question about how to deal with the smell. It’s a good question. He doesn’t want the downstairs of our house to smell like crap. Shelley suggested the match trick. Light a match and blow it out, the sulphur smell helps to mask the stink. Like Scarlett O’Hara, I won’t think about that now.  Monika, I will cross that bridge when I come to it.

Credit where credit is due, Shelley is determined that we will be prepared and that the right equipment will be available when it is needed and with not a moment’s delay. She knows what motor neurone disease is.

But I looked at that commode and I thought of other wives, other partners who care for their loved ones with motor neurone disease. I thought of carers whose partners are further along in the journey than Roch. We are following the same path.  I know for them there are days spent in a seemingly endless cycle of transfers on and off the commode, wiping, cleaning.  They say that some days are harder to bear than others. We’ve talked about the ‘crushing sadness’ of watching the physical disintegration of our partners. It’s hard for anyone else to understand what that's like.

We weep and we wipe. That’s what MND wives (and MND husbands and partners) do.   I believe that there is a special kind of love in this and a special kind of courage. This is sharing the darkness.
Mother Teresa said “Not all of us can do great things, but we can do small things with great love.”

That's all we can do. The great things go down in history, are recorded on film, make the headlines and that's as it should be. They inspire us. But meanwhile, in countless homes all over the world, small things are done every day, with great love and I think that's a great thing.

Saturday, 14 July 2012

So, meanwhile...

There’s a lot going on here. We are in the middle of our application for Self Directed Care for Roch. A number of people are helping us with this – all of whom have been an absolute pleasure to work with. I think Team Roch can now rival Andy Murray’s back up team. An Occupational Therapist – Shelley – carried out an assessment to establish whether there were any new equipment needs. A social worker – Yvette - came to do the Self Directed Support Assessment and left us with the Financial Assessment form to complete (I hate forms!). This asks about our income, expenses and savings. The Council needs to work out whether we will have to make a contribution towards the cost of the support (this is likely).  The Support Assessment has been completed and the Financial Assessment form has been submitted (although they may come back to us on that one, requesting copies of evidential documents). Yvette biked through the rain to collect the form from us!

Once the likely amount of the personal budget has been worked out, a Support Plan has to be written up showing how the money will be spent to support Roch. We have been helped by a Charity in Richmond called RUILS (Richmond Users Independent Living Scheme) to prepare this and it is almost complete, thanks to Paula from RUILS, who also cycled through the rain to visit us at home. The plan is to employ two people to help Roch when I am at work. In preparation we have set up a separate bank account for this, as advised.The idea is that Roch will be their employer but the Council will provide most of the funding for their wages. So we need to get to grips with PAYE, employer's liability insurance etc. - happily there will be someone else to help us with this.

So, meanwhile, in response to a letter from Dr. Cable, addressed to the Chief Executive of Hammersmith Council, Roch’s employers have regrouped and written to Roch to defend their position.  The speed with which Dr. Cable responded to Roch’s request for assistance was impressive and we are very grateful to him. It certainly prompted Hammersmith to action.  No less than three letters were hand delivered here last Friday evening (obviously to beat the deadline given for a response). Each one echoed the last, although written by or on behalf of different departments (individuals). I’m sure blood sweat and fear went into those letters as they strove to defend themselves, accusing Roch of not cooperating, refusing to admit that they ignored his requests but managing to patronise him at the same time and finally providing a breakdown of figures that simply covers his basic pension entitlement.  They are such carefully worded letters, quite obviously vetted by their legal department. You would think they were dealing with a high powered legal firm, instead of an employee of 24 years, with a terminal illness. In the letter from the HR department, there was an apology for the three month delay in providing the figures (that was referring to Roch’s latest request, there was no apology for the almost three year delay since his original request, at a time when he had been told he could have as little as two years to live). They actually make me sick. Roch will be well rid of them.  Was there anywhere in any of those letters, an acknowledgement of the thousands upon thousands of pounds Roch has saved the Housing Department over the years? Any thanks for years of dedicated service? You must be joking. Instead they sought to blame him for the fact that because of his absence through illness, the Council is now losing money. Surely this is because they were stupid enough not to train someone up to his level of expertise? They’ve had three years to do it. It’s not as if they didn’t know about his illness. Goodness, he might have died within 14 months and then they wouldn’t have had him for as long as they did.

So, meanwhile, as all this is going on…I am preparing for our trip home. We are off to Dublin in August. Roch and I will stay with my brother at first and the children with my mother, then we travel to Dingle for a week. Back in March, I contacted the Irish MND Association to ask if they could recommend somewhere for us to stay in Dingle – they came back to me with admirable speed, and with a number of suggestions.  Everyone has been so helpful. The woman at Trident Holiday Homes – Geraldine, thank you for all your patient assistance  when I called and asked so many questions about the cottage, Tracy at the Irish MND Association, who is currently trying to organise equipment for us in Kerry and my namesake Deirdre, the supervisor at the holiday cottages. It looks like we’ll be travelling light on the clothes side of things as we have so much gear to bring with us! I am liaising with both Tracy and Jenny, our occupational therapist from Richmond Neuro Rehab. All equipment requested from the Irish MND Association has to go through her.

This will be the first year ever when I will do all the driving. I’m okay with this, although I know it will be tiring. I’ve done the Exeter run a number of times now, a couple of times down and back on the same day. The car journey has always been part of our holiday – and something that the kids enjoy.  We are breaking up our journey and staying at a Premier Inn in Wales along the way. Having learnt from our previous mistake, we have requested that the bed be raised and they have agreed to do this.

Some of Roch’s family will be coming to Dingle for part of our stay. It’s where they spent family holidays as children so hopefully it will be an opportunity for them to revisit happy memories together. Roch is also pleased because it means some of his brothers will be around to help out, giving me and the kids a chance to have a break now and then. We are looking forward to staying in bed until at least 10am every morning and taking things very, very, easy.  No timetables, no ‘must do’ no ‘have to’. Good food and drink, fresh air, lovely scenery (hopefully not obscured by sheets of rain, although I go prepared for this) and the best of company.  I am so pleased both Kate and Tom will be with us, and we are so lucky to also have the wonderful Maura, my sister. Maura will be staying with us – she has often come on our family holidays . In fact, over the years she’s been like a third parent for the kids. Dad, Mum and Maurie. There’s nobody like her.  

Sunday, 1 July 2012

Shame on you, Hammersmith & Fulham Council.

So, how about Roch and work? I think an update is in order. Well, he has been on sick leave since 27th April.  Before then, he boasted an exemplary sick leave record, even since diagnosis. He has worked for Hammersmith & Fulham Council for 24 years, first as a Leasing & Acquisitions Officer, then Homelessness Officer, then Team Leader in Homelessness, then Duty Manager in Homelessness and finally, six years as Review Officer. Now they are attempting to force sickness retirement upon him, with no consultation, without answering any of his questions about ill health retirement and the financial package entitlement and with a callous disregard for the effect this might have on someone with a progressive terminal illness.  Happily, Roch is a shop steward and the Chairperson of the Disabled Workers Self Organised Group. He knows his rights, he is articulate, he can still communicate – but they won’t meet him, they haven’t called him, they don’t respond to his emails.  Just how stupid are these people? They really have picked the wrong man to intimidate but just because he’s able to fight his corner doesn’t make it any less reprehensible. We have enlisted the support and assistance of Dr. Vincent Cable, our MP. We hope this will force them to listen. Shame on you Hammersmith & Fulham Council.

Blog entry June 23rd 2012

“This is not the end, it is not even the beginning of the end, but it is perhaps the end of the beginning."


So here we are, three years on and so much has changed. From the word go, our strategy has been to maintain normality as much as we could and we succeeded, I think. It was the best approach, especially for the children. But in recent weeks we have had to accept a new approach. Phase one is over now. We have moved on. We are not in the final phase – but we have definitely reached what I would call Phase two. Driving Roch home from the Hospice on a hot, sunny afternoon in May it suddenly occurred to me that the time has come to accept that what was normal family life is gone forever and we need to make some changes. What am I doing, I asked myself? I need to spend more time at home, less time in work and less time worrying about work. I need to get my priorities right. He needs more care now, let’s face it.  His mobility is getting less and less. Once he hated the rollator, now it’s become his best friend.  He uses it to move slowly round downstairs. The sticks are a tool of the past. The electric wheelchair is coming into its own. Transferring from chair to car is more difficult, but do-able. A change is happening in his arms. They are rapidly losing strength, which means he is able to do less and less. I don’t like leaving him alone in the house. He certainly can’t prepare any food for himself. The most he can do is make an espresso and light a cigar (hurray for the Nespresso machine!).

Showering, dressing, washing his teeth – all these daily tasks are either beyond him or exhausting for him. So we have decided to make some changes. From the beginning of July, I go back to shift work. In practice I will work three eight hour shifts in nine days. At the end of my shift, I hand over and leave. More time at home, less stress in work. Less money, but whatever – priorities. We are trying to arrange self-directed care, which would mean the local authority paying for carers who are employed by Roch to look after him when I am in work. You see what I mean by phase two?

A few weeks ago, we made the trip to Exeter to bring Kate back to London for the summer. We decided to make a weekend of it and booked into a Premier Inn for one night. I’m getting used to the drive now. It’s hard for Roch, he loved driving. I had booked a room with disabled facilities. It was on the first floor, but that was okay, because there was a lift. Awkward door from lift lobby into bedroom corridor, as it had to be opened inwards and you had to use a card key, but with some fumbling and manoeuvring with the wheelchair, this was manageable. The room was your average Premier Inn, basic but spotless and the bed looked inviting, if a tad low. Here is where I made my mistake.  We had some doubts about whether Roch would be able to get up from the bed but we decided to be optimistic and hope for the best. What I should have done was ask whether we could have another mattress, or if there was another room with disabled facilities available, with a higher bed. But no!

We spent a pleasant evening with Kate at a local bar/restaurant where the staff were very helpful and provided a ramp to an area where we found space at a table.  I think we both slept well and the lenor bottle came in very handy in the morning, so Roch didn’t need to get out of bed until we were getting up.  The moment of truth. Sitting on the edge of the bed, he tried to stand, to transfer into the wheelchair – but his arms just couldn’t give him the strength. I tried to help, push-me-pull-you antics galore – but we just couldn’t do it. Nothing for it but to ask for help. You might think that’s easy but it ain’t. Once we had him dressed, I called Reception and they sent up a very helpful young man, Anthony – who had been on a ‘moving and handling’ course. Between us, we had him up in no time. Anthony proved invaluable for the rest of our stay – and took good care of us during breakfast and afterwards. Roch was tired and needed to rest for a while and they let us stay beyond normal checking out time. It was a good lesson, especially in advance of our proposed holiday in August.  My list is begun and I am adding to it all the time.

Tuesday, 5 June 2012

More scribbles

Blog entry 4th June 2012

Today my counsellor and I talked about anxiety and she gave me an equation to work with. Here it is:

Anxiety =      Danger (always over estimated)
            Coping + Resources (always under estimated)

I like this. It comforts me. I have always had a tendency to be over anxious, to face the world with a degree of trepidation. My inner flawed thinking tells me that my coping skills are insufficient, I disregard the resources available to me and I create a monster whose distorted shadow flickers somewhere just ahead of me - the perceived danger or threat. All this creates a level of anxiety which is almost disabling. Well, maths was never my strong point but now I look at this equation and it makes sense to me.

My self belief has never been strong but I have worked on this over the years. We talked about it today because well, I’ve been slipping lately. I tell myself that I am doing a good job here, that I am coping well, that I am doing the best I can. But do I really believe it? If I doubt myself now, what about the future we face? I try not to aim for the impossible standard of perfection that I have so often set myself in the past and failed to achieve. Here my counsellor offers another gem which resonates with me.

“The purpose of perfectionism is to eliminate the risk of being criticised.” - Oh how this struck a chord! I have had to work on this, too! I cannot bear to be criticised and to understand why this is I think we would have to go back a long way and dig deep. I am not about to go into that here (sighs of relief all round).

But here’s the thing for me - it is important for me to believe that I don’t have to be perfect. I don’t have to care what anyone thinks except the people I love. They are the only ones that matter. If they think I’m doing a good job, then that’s okay.

What else did we talk about? I told her that lately I’ve been putting things off.

We looked at why this might be happening. I’m even putting off tasks which might do me some good, make me feel better. Why? She had a suggestion.

“The Purpose of Avoidance is to reduce anxiety.” Actually, of course, we need to face what we are avoiding in order to lessen anxiety. So do things, she suggests, get them out of the way. You’ll feel better. There are some things that we can’t control, some fears and anxieties we can’t do anything
about but sometimes you can choose to take action, even if it’s just in the little things.

The first thing I did when I got home was to enter a poetry competition. Here’s an example of something I’ve been putting off for ages. I marched off to the post box and sent off three poems. It’s an adventure. I felt good about it. It’s disappointing when you don’t win or get anywhere, but there’s always the hope of success and if you’re not in, you can’t win. For an over anxious perfectionist who’s afraid of failure, hates criticism and wastes too much energy avoiding both, I think that’s a pretty good start.

Notes from 2nd June 2012

Ska night at the Irish Centre

We had such a good time last night. We went to the Irish Centre in Hammersmith, to a Ska night there. I surprised myself by dancing! I thought about it before taking to the floor. There was a time when Roch would have been amongst the first to get up and dance (as I write an image comes to mind, a young, blonde, extremely thin Roch, full of wiry energy and the life and soul of the party - dancing til the small hours). It’s a lovely memory and it makes me sad and angry too, to think that for Roch, dancing has been relegated to the country of last times - but he is still the life and soul of any party. Last night he was the centre of our group and when I was sure he had lots of company, I ventured onto the floor. I’m glad I did because it was great fun and I know he was proud of me for getting up to dance, and glad I could do it without him. He’s that kind of guy.
Star trekking at Ska night
"Live long, and prosper."

From my notes

I have notebooks scattered about the house, upstairs, downstairs, in my handbags. Scraps of poetry, ideas for stories, blog entries. Here are some of the recent blog scribblings.  

Blog entry 27th May 2012

What gorgeous weather! Barbecue weather. I think I’ve got the hang of it now. I aim to be the Barbecue Queen, proving that it is not a male preserve. I know Roch would have loved to have been King of the Barbecue but he never had the chance. We invested in a barbecue last year but only managed a couple of uses ‘before the rains came‘ last year. He might not be able to cook the food, but he sure can assist with armchair advice. He can get outside to our garden table using the rollator and finds it easier to sit on this than on a garden chair as he can no longer stand up from a seated position on one of these. Anyway, the garden door open outwards but we need two minor jobs done before the electric wheelchair can make it outside. The ‘lip’ at the threshold needs to go and part of the outer windowsill, too, so that the door can open right back, leaving more space on the ramp for the chair to turn.

This past weekend was the most enjoyable in ages! We had visitors again. This time it was Louis, Roch’s best friend from Primary School (they met when they were four years old) and Joe, his best friend from University (Best Man at our wedding and Kate’s godfather). So relaxing to spend time with them and in such glorious weather. The barbecue came into its own. It felt like a little holiday, eating and drinking al fresco and hearing talk of old times! Roch was in his element. All the old stories got an airing (and some new ones I hadn’t heard before..)

Saturday night was spent with Louis and Joe watching the Eurovision Song Contest. Always good for a laugh. The Contest, I mean. Although both Louis and Joe provide their own brands of very special humour! A good time was had by all.

Roch, Louis and Joe enjoy the sunshine.

Tuesday, 22 May 2012

A funny old week

It’s been a funny old week. I saw it stretching before me, a world of possibilities, lots of time to myself, time to sleep, to write. In fact, although I did nap on occasion during the day (so tired!), I found when I went to bed early that I didn’t fall asleep quickly, but had to read for a few hours until I could drop off, then woke early and found it difficult to go back to sleep. I worried away at some poetry every now and then, watched over the studying Tom and wandered aimlessly round the house, which felt far too quiet and empty. Maybe next time, I’ll try to get away for a few days.

I did spend one lovely evening watching one of my favourite films (not Roch‘s kind of thing) and I definitely ate too much chocolate! A highlight of my week was a visit to Twickenham Rugby stadium to watch Leinster winning the Heineken Cup! Thanks to my brother for a great afternoon.

I went to see Roch a number of times. It’s a lovely place, The Princess Alice Hospice, in an almost rural setting. It helped that there is a very nice pub nearby which serves delicious food. There were several visits to the Prince of Wales! We spent a pleasant Sunday afternoon there together, just the two of us. Although he’ll be glad to come home today, I think the stay was okay for him. As he remarked to one of the nurses, “It’s not as bad as I thought it would be.” A good deal better, I think. Tom, although in the midst of exams, went to see him on Saturday and they watched the Champions League final together. It was great that Tom had the opportunity to see the Hospice for himself and spend time with his Dad there. Seeing Roch there was not too traumatic for us as he is relatively well at the moment. Many of his fellow patients were very ill indeed and their presence is a reminder, if we needed one, of the main purpose of the place. It is, in the end, a place where people go to die, but  palliative care began for us when Roch was diagnosed and will continue through the years of his illness and I thank God for it. Roch cannot praise the nursing staff highly enough, or Donna for the careful preparations made for his visit.

But it will be good to have him home.

Last night I went to the first MND Carers support meeting for West London, arranged by Mick Stone, an Association Visitor with the West London branch of the MNDA. It was a mixed experience, depressing, moving and uplifting in turn. But I was glad to be there. I met a group of inspirational people, all caring for family members they love, brought together by the tragedy of this awful disease. So what am I left with this morning? I am feeling angry.

Once again the words ’postcode lottery’ came up. This is a phrase frequently used these days but its meaning took on special force for me last night.  I am grateful that we live in Richmond, as some MND  families , living in other areas, have little or no support and struggle for services which I was beginning to take for granted. No more. On behalf of those people, especially those whose relatives have a rapid form of the disease, I feel angry today. Change upon change in condition occurs, deterioration is fast - not only do they have to cope with their feelings about what they see happening to their mother/father/partner, but they have to do so with, it seems to me, little or no professional guidance or help about what to plan for or advice about what would help, financial assistance etc. So glad Lorraine Carter was there from the MNDA to take up the baton on behalf of those present, but we all need to do what we can to make sure to spread awareness of the disease and its devastating effects (one carer last night described diagnosis as an ‘earthquake’ and I thought yes, what a good way to describe it) and the need for the same level of services and support to be available everywhere around the country to all who are affected. The usual problems were raised - hospital staff who don’t understand what MND is, GPs who fail to diagnose early and later fail to provide adequate care after diagnosis. It’s not their fault, many GPs will never see a patient with MND, others may have one MND patient in their entire career. But that’s no help to that patient, or their family. How could you not feel overwhelmed as a carer?

I felt grateful that, for Roch, the progress of the disease is slow, and that we have had, so far, so much support and help from so many. I know there are others like us. But I wish I could do more to help those who are not so lucky.

Last night I glimpsed a future which frightens me but I saw how bravely others live a life devoted to caring for relatives suffering in more advanced stages of MND and took heart from their courage and their tenacity. I learned a lot last night from my fellow carers and I look forward to more opportunities to meet with them.

Saturday, 12 May 2012

The Hospice Stay approaches

‘What should be the key factors for respite care?
  • To provide a place of care within fixed dates which have been agreed prior to admission.
  • To continue the patient’s normal routine as closely as possible, with changes only being made if clinically indicated.‘ Oxford handbook of PALLIATIVE CARE

  • The Hospice stay is approaching. I know Roch is apprehensive and frankly, I’m not sure how I will feel when he’s there, but overall I think it’s come at the right time. The wonderful Donna, our Hospice nurse, came to visit on Tuesday and we had a very productive and reassuring chat. It’s a ‘respite’ stay, which means that the stay provides a break from the difficulties of the situation for Roch, for me, for all of us. For Roch, it’s an opportunity to get to know the staff at the Hospice, and for the staff to get to know him. It comes at a time when he is well and he can communicate his needs, his likes/dislikes. Donna consulted with us and went away with a care plan, so the staff there will know how much assistance he needs with everyday tasks, what equipment he may require, whatever he might need to make his stay a pleasant one.

    He will have a room to himself, ensuite, with a door out to their garden or courtyard, or a room with a decking area right outside. He can order a cooked breakfast (a full English!) every morning, made freshly just for him. The thought of that full English cooked breakfast has made a difference!

    There will be a small fridge in his room - vital information volunteered by Donna before I even had a chance to ask.

    She is anxious to reassure him, “It’s not a prison,” she says. “Your friends are welcome to come and visit you, bring you out for lunch, round the corner to the local pub in the evening.”

    She has alerted the Chaplain - she anticipates lively discussion and debate between them. There is a small Chapel or at least, a room for private worship and reflection. I notice that she doesn’t mention this. She knows him well enough to know that this will not be a selling point for him.

    We discuss what else he may need to make his stay more comfortable. We have no way of getting the electric wheelchair there ourselves, so Donna quietly ponders this. Later she calls to say that the wheelchair will be collected on the day of admission, before we leave the house. It will be there for him when we arrive. So, he will not be entirely dependent.

    ‘One example of respite care is the nurse-led approach. The respite nurse would carry out a home visit prior to the patient’s admission to discuss their care needs during admission, write a care plan that includes the patient’s routine and answer any questions. The same nurse would liaise with in-patient staff prior to admission about any specific requirements, e.g. nutritional needs, mattresses, equipment etc. This respite nurse would then admit the patient to the hospice, review them during the admission and assist in organizing their discharge.’
    Oxford handbook of PALLIATIVE CARE

    So - preparations have begun.
    Here’s a peek at some of the essentials on our list:

    Clothes (obviously) ie underwear, socks, tee shirts, jeans, tracksuit bottoms, braces, belt, shorts and tee shirts for bed
    The trusty rollator
    The sock putter-on-er (essential piece of kit)
    Moist toilet roll (no bio bidet I’m afraid)
    His towelling robe
    Two small towels (large towels are too heavy now)
    Nespresso machine (he will no doubt be offering espresso to staff, patients and visitors alike)
    Espresso cups
    Nespresso pods (a goodly supply)
    CIGARS and lighter(s)
    Beer (preferably Okocim)
    Kindle charger
    I-phone and charger
    PC & Charger
    Medication: Riluzole, quinine, baclofen, lorazapam, Vit E suspension, Vit C, Loperamide
    Blanket/bedspread from home
    Toilet bag: toothpaste, toothbrush, shower gel, shampoo, mouthwash, dental sticks, deodorant, facecloth.

    ‘It is widely accepted that keeping patients at home weighs heavily on those family members who will provide care and support. Caring for someone on a daily basis can be very tiring, both physically and emotionally, leading some carers to feel unable to manage, which may result in unplanned admissions to hospital. One strategy to help carers in this situation is for hospices to offer planned respite care, either as an in-patient or on a day basis within a day hospice, to enable carers to have a rest from caring. This may be sufficient to enable them to ‘recharge their batteries’ and continue the care they provide, thus allowing their family member to stay at home.’
    Oxford handbook of PALLIATIVE CARE

    It gives me a chance to rest, time to myself. Donna is firm with me “You’re not planning to visit every day are you?” She asks me. “The ward staff would actively discourage that.”
    But no, I’m not planning to visit every day. I need some headspace, I need to sleep. If I feel like it, I will write. I have ordered a book from Amazon and hope to have time to read. I plan a DVD afternoon - just me, the sofa, the TV and some chocolate. I have taken the week off work. I begin to crave time to myself.
    Tom has exams that week and will be on study leave - but that’s different, Tom’s my boy.

    We have a bit of a running joke going, which Donna is party to - the ‘All about Roch joke’.
    ‘It’s not all about you, you know, Roch,” she says, laughing.
    “Oh yes,” we say together, in mock protest, “Yes, it is.”

    But we both know that this is about me, too.