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:

http://www.youtube.com/watch?v=ps6NkWxQ2BY

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...


http://www.kerryholiday.co.uk/blaskets.html


http://www.discoverireland.ie/Arts-Culture-Heritage/the-blasket-centre-ionad-an-bhlascaoid/381

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.



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.

#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.”

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.

 

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.  

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."

Churchill

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.