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?
Yes/No
⭐ 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.
Finally,
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...."
Thursday, 27 September 2012
Saturday, 22 September 2012
Oddfellows
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.
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 http://www.ruils.co.uk/ 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.
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 http://www.ruils.co.uk/ 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.
http://www.hotels.com/ho349785/the-gibson-hotel-dublin-ireland/
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.
"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 |
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
played.
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
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
played.
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.
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.
 |
| 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.
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.
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.
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.
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.
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| 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.
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| Muireach - the old house |
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| 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.
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