This month has seen a new development for the Blog. I am delighted to announce that 'A monkey on his back' was featured in the August issue of the local MND Association Branch newsletter (West London and Middlesex Branch). I am very proud to be included and many thanks to the editor, Keerthi for the lovely piece she put together. Those of you who are my friends on facebook will have seen the article, which I posted recently. To date it has not been available online.
Tuesday, 30 August 2011
Monday, 29 August 2011
Wash 'n Go - or is that 'Go' and wash?
It surprises me that I have failed to mention the installation of the bio-bidet! This long awaited and much anticipated piece of equipment had been residing in a box in a cupboard upstairs for some months. It was originally supplied by the Local Authority, through our dedicated and professional Occupational Therapist, Rachel, who has graced these pages before. Tony and his boys made sure all the plumbing and electrical connections were in place and would have done the installation work but the Local Authority wanted their own survey carried out first, and their own people to instal it. That's understandable but the monkey waits for no man. We're just lucky its progress is slow in Roch's case because we had to wait months for the survey, after which, it was a couple of weeks before their man arrived to instal the thing. By this time we had forgotten a) that the bio bidet had been put out of the way and b) where we had put it! Roch couldn't go upstairs to look, so had to send a complete stranger to look for it. Happily when he called me in work, a moments' recollection was enough for me to direct them to where I had stashed it away. But for a split second my mind went blank and I was afraid we would have to send the guy away again.
The problem which the bio bidet seeks to address, of course, is the worrisome question of cleaning and wiping one's arse when there is no longer enough strength in the hands and fingers. Roch worried about this from the word 'go', and we talked about it in the early days with the Community Matron and the Hospice nurse. Short term solutions were suggested and I think he felt quite encouraged and comforted. Our stay in Somerset and the use of a 'Clos-O-mat' toilet there last year impressed us with the efficient 'wash 'n dry' function, but the'Clos-O-mat' costs a lot of money. We could have used our grant from the MND Association for it, but it would have accounted for all the money and we couldn't justify that when there were so many other expenses. Instead, the lovely Rachel suggested a bio bidet, which the Local Authority agreed to pay for as essential equipment for Roch. I'm told they are very popular in Japan. You can have a look at it here:
http://www.healthandcare.co.uk/bidets/bio-bidet-supreme-bb-1000.html
The problem which the bio bidet seeks to address, of course, is the worrisome question of cleaning and wiping one's arse when there is no longer enough strength in the hands and fingers. Roch worried about this from the word 'go', and we talked about it in the early days with the Community Matron and the Hospice nurse. Short term solutions were suggested and I think he felt quite encouraged and comforted. Our stay in Somerset and the use of a 'Clos-O-mat' toilet there last year impressed us with the efficient 'wash 'n dry' function, but the'Clos-O-mat' costs a lot of money. We could have used our grant from the MND Association for it, but it would have accounted for all the money and we couldn't justify that when there were so many other expenses. Instead, the lovely Rachel suggested a bio bidet, which the Local Authority agreed to pay for as essential equipment for Roch. I'm told they are very popular in Japan. You can have a look at it here:
http://www.healthandcare.co.uk/bidets/bio-bidet-supreme-bb-1000.html
The report from Roch: Not only is his bum washed, it's also polished!
If you visit, you are welcome to use it and test the functions. Ladies, remember, there's even a feminine wash...
Monday, 22 August 2011
Plans
We haven't been making plans lately. I hadn't thought about it, but a meeting when we were in Dublin gave me pause for thought. For the past year Roch has been in contact through the PLM (Patientslikeme) website with a patient like him (R) who lives in Dublin with his wife (A). R was diagnosed with MND last year. One afternoon last month they came to visit us. I'm sure they were as nervous as we were. After all, we'd never met before. None of us knew quite what to expect. I think I can say, at least from our point of view, that the afternoon was a success. We all got on really well and you know what? Now don't take this the wrong way, but it was such a relief to spend time with people who really do understand, because they are living through MND too. R was the only person we met in Ireland who thought Roch looked well! He did look well! It really cheered Roch up. You might have expected some mutual bemoaning of fate, but after an initial agreed 'Well, MND is shit really isn't it?' we didn't waste our time beating our breasts and pitying each other. In fact, pity was conspicuous by its absence. It all felt very liberating. We got down to more important things, sharing experiences, listening to each other and having a laugh. Roch's MND is further advanced than R's and so we had some hopefully useful tips to share with them. But that's not to say they didn't teach me anything. They reminded me of us in the first eighteen months after diagnosis. They are determined to get out there and do things while R still can. We were like that. We brought the family to New York, we went to Tenerife together (first holiday alone), we went back to Venice, we had a wonderful holiday in Somerset. We made plans. But our meeting with R & A made me realise that somewhere along the way we stopped planning ahead.
We've both been feeling low, easily daunted - but he is not housebound, not by a long shot. It is pointless and in fact, damaging to dwell on what he cannot do. Of late, I think we have both been guilty of this. Rather count our blessings and concentrate on what he CAN DO. He can walk a little bit, with two sticks, he can drive, he can be wheeled around in a wheelchair (let's get that scooter and he won't have to rely on other people!). He can eat, drink and be merry and smoke a cigar or two. He can still enjoy life and I can enjoy life with him.
It's going to be harder to travel, but we've decided that we've got to start making plans again. Roch has set the ball rolling and is in the throes of arranging a 'Stag' weekend in Dublin in November to celebrate The Big Birthday! It's rather an ambitious project, given recent reluctance to go down the High Street for a coffee, but It's very 'Roch' to make that leap. Nothing if not enthusiastic, once he takes the project on board. There are plenty of helpers ready and willing to reconnoitre, and make arrangements and bookings.
I've started rather more modestly by booking a weekend away for us at a hotel in the New Forest, to celebrate our 21st Wedding Anniversary, which is coming up at the end of the month.
Plans are already afoot for the now traditional Family Christmas Party.
We've decided to look into taking a cruise next year (February?) and we're currently contemplating another family trip to New York. It can be done. What's the phrase I'm looking for folks? Quoting our own Bertie (Aherne) "A lot done, more to do."
We've both been feeling low, easily daunted - but he is not housebound, not by a long shot. It is pointless and in fact, damaging to dwell on what he cannot do. Of late, I think we have both been guilty of this. Rather count our blessings and concentrate on what he CAN DO. He can walk a little bit, with two sticks, he can drive, he can be wheeled around in a wheelchair (let's get that scooter and he won't have to rely on other people!). He can eat, drink and be merry and smoke a cigar or two. He can still enjoy life and I can enjoy life with him.
It's going to be harder to travel, but we've decided that we've got to start making plans again. Roch has set the ball rolling and is in the throes of arranging a 'Stag' weekend in Dublin in November to celebrate The Big Birthday! It's rather an ambitious project, given recent reluctance to go down the High Street for a coffee, but It's very 'Roch' to make that leap. Nothing if not enthusiastic, once he takes the project on board. There are plenty of helpers ready and willing to reconnoitre, and make arrangements and bookings.
I've started rather more modestly by booking a weekend away for us at a hotel in the New Forest, to celebrate our 21st Wedding Anniversary, which is coming up at the end of the month.
Plans are already afoot for the now traditional Family Christmas Party.
We've decided to look into taking a cruise next year (February?) and we're currently contemplating another family trip to New York. It can be done. What's the phrase I'm looking for folks? Quoting our own Bertie (Aherne) "A lot done, more to do."
Sunday, 14 August 2011
Post holiday blues...
Well, we have been home now for almost two weeks. The mood (Roch and me) has been down, on the whole. Post holiday blues? I've been feeling stressed about my new role in work and in a way I think that's a good thing. It's taking my mind off what's going on at home. I've been quite preoccupied. In another way I suppose when my focus shifts from him I don't feel in tune with his mood or his needs. Things will settle down. I'll find a balance. He hasn't gone back to work yet. He's not feeling up to it, mentally or physically I think. It's funny, recent contact with professionals - they've all said the same thing. "He's doing so well." I guess he is doing well, relatively speaking. So why don't I feel more cheerful? He's still able to drive, he's still working, he can still enjoy his food and drink. His breathing's ok.
The strength in his arms is less and he's lost some weight. His upper arms are looking skinny and his legs are losing muscle - but he's still looking good. When he's sitting down, holding forth, he looks almost like his old self. I notice a tendency some people have to rush to do things for him, rush to assist him. I understand the need to do this, but he can still speak and he usually asks. It's tempting to try to forestall his need to request help but constantly hovering about and doing everything for him makes him feel even less able and more of a crock. It's a challenge for all of us.
He has fallen recently. I was at work and Kate and Simon were with him. It was in the kitchen and I think it gave them quite a shock. It gave Roch a shock too. Just one of the those things, his legs went from under him. I thought when I heard, why did I not think of talking to the kids about what to do when it happens? Never occurred to me. He didn't hurt himself.
His neck's been giving him trouble for a while now. It's almost always sore and the cramps started there a few months ago. It's beginning. There's no need for a neck brace yet - the muscles still working would just give up the ghost if he used one constantly. We must ask the Community Nurse about a proper neck pillow. She did organise some very comfy cushions, two of which we have used to raise the old green sofa in the kitchen. He couldn't sit there any more because it was too low. Rachel, our Occupational Therapist has taken some measurements for raising the bed. It's getting difficult for him to get in and out of bed - that's too low, too.
We're beginning to think about an SDC (Self Directed Care) package. Basically, that's where the Council give the patient a sum of money to use for privately arranged care. That level of care is not required as yet, but we need to plan ahead. An assessment has to be carried out by a Social Worker and a Carer's assessment also has to be done. We talked to Rachel about this on Friday. She thinks he's doing well.
I was proud of my preparations before setting off for Dublin. We borrowed a ramp, the folding toilet frame was carefully packed up into the boot (boy, did that come in handy), radar key for public toilets along the way had arrived in good time, emergency kit and change of clothes in the car, first aid kit etc., wheelchair of course. We even managed to bring some clothes with us! It all went well. But you know what? It's just so sad. The doctors say "You must be positive."
Since coming home we've been to King's College - he's come to the end of the Lithium Carbonate trial. So now he's really on lithium but it will be April before we find out whether he was on lithium for the eighteen months or not. That was some trip. Thank God for air conditioning in the Berlingo. I drove across London in searing heat and I made the same mistake as last time, following Mrs. SatNav's instructions. This time I did my own recalculating and did a U-turn in double quick time. But we were still late for the appointment. He's not eligible for new trials as it's more than two years since his diagnosis. It's another little sign of the time passing.
Last Monday we spent the night in the Royal Brompton Hospital, where Roch was the subject of a sleep study. The purpose of the study was to discover whether his breathing is being compromised while asleep. Perhaps this is why he is sometimes so tired in the morning. Neither of us was looking forward to it but in the end it turned out to be less stressful than expected. All the staff were very kind and helpful, the room was bright and airy with a big window - there were even trees outside and we were treated to the sight of a spectacular rainbow at one point. I found that quite cheering. The visit even felt like a bit of a break. There was quite a lot of waiting around to do, just sitting in the room. So we read and rested and had some awful cups of hospital tea and coffee. The nurses and technicians explained clearly what was going to happen and it happened exactly as they said. They did a lung capacity test (good), an intern (she looked about Kate's age) took blood from his wrist (oxygen levels good) and a technician wired him up in preparation for the study. Later, a second technician arrived and connected him to a machine by the bed. With small tubes in his nostrils, a sensor attached to his ear and manifold lines going to a device tied round his chest, he was all set for a good night's shut-eye! The ear sensor monitored heart rate and oxygen levels. We tested the heart rate monitor at one point by the simple expedient of me lifting up my tee-shirt for about three seconds - but his heart rate shot up so rapidly I decided the experiment had been successful (still got it...) and refused to indulge him with further entertainment of that nature in case it affected the results of the study.
Forbidden to leave the bed from 8.30pm until he was detached from the machine in the morning - but that was no problem as he had his willing hand maiden there for the night (that was me, in case you thought the hospital provided one). I think his sleep was fitful, although no sooner had he remarked that he would never get to sleep at all, than the room was filled with the sound of his snoring. Happily, I had remembered my ear plugs and despite a rather unsteady camp bed, which occasionally threatened to fold up with me in it, I did get some sleep.
The Consultant gave us the results of the study in the morning. We liked her. She sounded like she knew what she was talking about. She says he's doing well. She told us that although there had been some occasional dips in oxygen levels during his sleep, these were within normal limits. However, we will go back to the Brompton for a morning soon, to be instructed in the use of a non-invasive ventilator, just in case. Then they will provide us with a machine, to keep at home if needed. It's an insurance policy and we both agree it's a good idea. Another sign of the times. Another step along the way.
The strength in his arms is less and he's lost some weight. His upper arms are looking skinny and his legs are losing muscle - but he's still looking good. When he's sitting down, holding forth, he looks almost like his old self. I notice a tendency some people have to rush to do things for him, rush to assist him. I understand the need to do this, but he can still speak and he usually asks. It's tempting to try to forestall his need to request help but constantly hovering about and doing everything for him makes him feel even less able and more of a crock. It's a challenge for all of us.
He has fallen recently. I was at work and Kate and Simon were with him. It was in the kitchen and I think it gave them quite a shock. It gave Roch a shock too. Just one of the those things, his legs went from under him. I thought when I heard, why did I not think of talking to the kids about what to do when it happens? Never occurred to me. He didn't hurt himself.
His neck's been giving him trouble for a while now. It's almost always sore and the cramps started there a few months ago. It's beginning. There's no need for a neck brace yet - the muscles still working would just give up the ghost if he used one constantly. We must ask the Community Nurse about a proper neck pillow. She did organise some very comfy cushions, two of which we have used to raise the old green sofa in the kitchen. He couldn't sit there any more because it was too low. Rachel, our Occupational Therapist has taken some measurements for raising the bed. It's getting difficult for him to get in and out of bed - that's too low, too.
We're beginning to think about an SDC (Self Directed Care) package. Basically, that's where the Council give the patient a sum of money to use for privately arranged care. That level of care is not required as yet, but we need to plan ahead. An assessment has to be carried out by a Social Worker and a Carer's assessment also has to be done. We talked to Rachel about this on Friday. She thinks he's doing well.
I was proud of my preparations before setting off for Dublin. We borrowed a ramp, the folding toilet frame was carefully packed up into the boot (boy, did that come in handy), radar key for public toilets along the way had arrived in good time, emergency kit and change of clothes in the car, first aid kit etc., wheelchair of course. We even managed to bring some clothes with us! It all went well. But you know what? It's just so sad. The doctors say "You must be positive."
Since coming home we've been to King's College - he's come to the end of the Lithium Carbonate trial. So now he's really on lithium but it will be April before we find out whether he was on lithium for the eighteen months or not. That was some trip. Thank God for air conditioning in the Berlingo. I drove across London in searing heat and I made the same mistake as last time, following Mrs. SatNav's instructions. This time I did my own recalculating and did a U-turn in double quick time. But we were still late for the appointment. He's not eligible for new trials as it's more than two years since his diagnosis. It's another little sign of the time passing.
Last Monday we spent the night in the Royal Brompton Hospital, where Roch was the subject of a sleep study. The purpose of the study was to discover whether his breathing is being compromised while asleep. Perhaps this is why he is sometimes so tired in the morning. Neither of us was looking forward to it but in the end it turned out to be less stressful than expected. All the staff were very kind and helpful, the room was bright and airy with a big window - there were even trees outside and we were treated to the sight of a spectacular rainbow at one point. I found that quite cheering. The visit even felt like a bit of a break. There was quite a lot of waiting around to do, just sitting in the room. So we read and rested and had some awful cups of hospital tea and coffee. The nurses and technicians explained clearly what was going to happen and it happened exactly as they said. They did a lung capacity test (good), an intern (she looked about Kate's age) took blood from his wrist (oxygen levels good) and a technician wired him up in preparation for the study. Later, a second technician arrived and connected him to a machine by the bed. With small tubes in his nostrils, a sensor attached to his ear and manifold lines going to a device tied round his chest, he was all set for a good night's shut-eye! The ear sensor monitored heart rate and oxygen levels. We tested the heart rate monitor at one point by the simple expedient of me lifting up my tee-shirt for about three seconds - but his heart rate shot up so rapidly I decided the experiment had been successful (still got it...) and refused to indulge him with further entertainment of that nature in case it affected the results of the study.
Forbidden to leave the bed from 8.30pm until he was detached from the machine in the morning - but that was no problem as he had his willing hand maiden there for the night (that was me, in case you thought the hospital provided one). I think his sleep was fitful, although no sooner had he remarked that he would never get to sleep at all, than the room was filled with the sound of his snoring. Happily, I had remembered my ear plugs and despite a rather unsteady camp bed, which occasionally threatened to fold up with me in it, I did get some sleep.
The Consultant gave us the results of the study in the morning. We liked her. She sounded like she knew what she was talking about. She says he's doing well. She told us that although there had been some occasional dips in oxygen levels during his sleep, these were within normal limits. However, we will go back to the Brompton for a morning soon, to be instructed in the use of a non-invasive ventilator, just in case. Then they will provide us with a machine, to keep at home if needed. It's an insurance policy and we both agree it's a good idea. Another sign of the times. Another step along the way.
Wednesday, 20 July 2011
A funny old trip
Well, we made it to Dublin and we've been staying in my brother's house since Thursday night. We can't stay at my mother's anymore as it's not suitable for Roch. So a big thank you to Dermot and Emer, because being able to stay here means a lot. Roch feels safe here. It's like a home from home for him. There's even a Nespresso machine...
It really doesn't seem a week since we left London for Holyhead. We broke up the journey and stayed at a Travelodge hotel in Wales last Wednesday night. We had booked a disabled room and they did their best - shame he couldn't use the shower. To use it, you had to step into the bath. Well,that's completely out of the question for Roch. No amount of hand rails will help if a person can't lift their feet up. Happily the disabled cabin on Irish Ferries had a great wet room attached. Shame the cabin itself was so tiny with no turning room for the wheelchair...
The Ireland visit feels different this time round. Roch asked me the other day if I thought his condition had worsened since we came to Dublin. I don't think it has. But somehow being out of his 'comfort zone', has thrown the condition into relief. He seems worse here. The children have noticed and it's not easy for them. It's not like other holidays. Dad can't do things like before and they feel a bit lost.
There was a big family party on Saturday - all Roch's family gathered together to celebrate a 21st birthday and also to celebrate Roch being home again. I think they were shocked when they saw how difficult it is for him to walk now. There has been a change since Christmas, which is when some of them saw him last. But it was a great day, and I know Roch felt the warmth of the love and affection around him. He really felt valued. Many thanks to Paudie and his lovely wife Ger who went to such trouble making sure everything was in place for him, including ramps at the front and back doors.
But it's a funny old trip. Everything is so familiar - it's us who are different. It's hard to keep the sadness at bay. I think it's worse in Ireland. Why is that?
Today, he and his brothers and sisters have set off for Kilkenny, to see the Holy Man (Fr. Roch, Roch's uncle). It was something Roch was very keen to do. Fr. Roch has been very faithful since Roch's diagnosis. They left here a short while ago, two cars in convoy. I hope they have a good day. I know Roch's in good hands.
It really doesn't seem a week since we left London for Holyhead. We broke up the journey and stayed at a Travelodge hotel in Wales last Wednesday night. We had booked a disabled room and they did their best - shame he couldn't use the shower. To use it, you had to step into the bath. Well,that's completely out of the question for Roch. No amount of hand rails will help if a person can't lift their feet up. Happily the disabled cabin on Irish Ferries had a great wet room attached. Shame the cabin itself was so tiny with no turning room for the wheelchair...
The Ireland visit feels different this time round. Roch asked me the other day if I thought his condition had worsened since we came to Dublin. I don't think it has. But somehow being out of his 'comfort zone', has thrown the condition into relief. He seems worse here. The children have noticed and it's not easy for them. It's not like other holidays. Dad can't do things like before and they feel a bit lost.
There was a big family party on Saturday - all Roch's family gathered together to celebrate a 21st birthday and also to celebrate Roch being home again. I think they were shocked when they saw how difficult it is for him to walk now. There has been a change since Christmas, which is when some of them saw him last. But it was a great day, and I know Roch felt the warmth of the love and affection around him. He really felt valued. Many thanks to Paudie and his lovely wife Ger who went to such trouble making sure everything was in place for him, including ramps at the front and back doors.
But it's a funny old trip. Everything is so familiar - it's us who are different. It's hard to keep the sadness at bay. I think it's worse in Ireland. Why is that?
Today, he and his brothers and sisters have set off for Kilkenny, to see the Holy Man (Fr. Roch, Roch's uncle). It was something Roch was very keen to do. Fr. Roch has been very faithful since Roch's diagnosis. They left here a short while ago, two cars in convoy. I hope they have a good day. I know Roch's in good hands.
Monday, 11 July 2011
Never a dull moment.
Last Thursday I attended a Carer's Workshop, organised by Richmond Carers. This time it was First Aid (British Red Cross Qualification). The trainer was excellent. I'd want her there if I needed first aid, let me tell you. I am enormously pleased that I was able to attend and that I passed! Having done it, I now wonder how on earth Tom and Kate survived their childhood as I really only had the faintest idea of what to do in a first aid emergency before last Thursday. Lucky, I guess. Tom is very lucky. I did know it was important to tilt the chin of an unconscious person to keep the airway open - but I only knew it because a paramedic told Roch to do this years ago on the horrific occasion when Tom stopped breathing and Roch rang for an ambulance. We didn't know to do it until we were told. Happy story, Tom recovered. Now I know exactly what to do. It all came back to me as our instructor brought us through the correct procedure and I felt a bit wobbly for a moment.
We practised CPR on some very unlife-like dummies - it's really not as easy as it looks on TV. Casualty has a lot to answer for.
So there we are, settling down for the night and I remark to Roch that I am now equipped to deal with a medical emergency and can confidently carry out CPR if necessary. He's reading and without looking up he says 'Maybe I won't want you to.' Typical. 'Well, be sure and let me know,' I reply. After a pause I ask a serious question -'At the moment you'd want me to, right?'
He thinks for a moment. 'Yeah, I can still get a lot of pleasure from life, and give pleasure too, I hope.' He returns to Ambrose Bierce. 'Yeah, you can go ahead at the moment.'
'Well, let me know if it changes,' I say.
Never a dull moment.
We practised CPR on some very unlife-like dummies - it's really not as easy as it looks on TV. Casualty has a lot to answer for.
So there we are, settling down for the night and I remark to Roch that I am now equipped to deal with a medical emergency and can confidently carry out CPR if necessary. He's reading and without looking up he says 'Maybe I won't want you to.' Typical. 'Well, be sure and let me know,' I reply. After a pause I ask a serious question -'At the moment you'd want me to, right?'
He thinks for a moment. 'Yeah, I can still get a lot of pleasure from life, and give pleasure too, I hope.' He returns to Ambrose Bierce. 'Yeah, you can go ahead at the moment.'
'Well, let me know if it changes,' I say.
Never a dull moment.
Monday, 4 July 2011
The monkey's reach extends...
For some time now Roch has been trying to reach a decision about work. Fatigue is becoming more of an issue and he feels he is less efficient now - simply reaching for a file, holding a file - the things we do hundreds of times in work without thinking - are becoming impossible for him. There may be answers to the practical problems in the short term and no doubt some of these are coming to your mind as you read this. But the bottom line is that he is losing an important part of his identity. Roch was in complete control of his job - intellectually he is still in control but his body is failing him. It is too tiring, soon he will not be able to get through all the work - already he feels diminished and the thought of having to relinquish this part of his life, this huge part of who he is, is deeply sorrowful for him. There are short term solutions, as I say, and we talked about this last night - but essentially his working life is beginning to draw to a close and there is nothing good about this. It is not fair to be robbed of this so early.
Here is a man who reached an excellence and expertise in his position many would envy, who earned the healthy respect of his professional opponents and inspired the admiration and affection of his co-workers over more than twenty years. Roch there are no words of comfort as you see your professional life slipping away from you - but you will always have that respect and you will always have the admiration and affection of your co-workers and the gratitude of the multitudinous 'punters' you have dealt with over the years (ok some of them won't be so grateful, but you know what I mean). Few can boast such a successful career.
Here is a man who reached an excellence and expertise in his position many would envy, who earned the healthy respect of his professional opponents and inspired the admiration and affection of his co-workers over more than twenty years. Roch there are no words of comfort as you see your professional life slipping away from you - but you will always have that respect and you will always have the admiration and affection of your co-workers and the gratitude of the multitudinous 'punters' you have dealt with over the years (ok some of them won't be so grateful, but you know what I mean). Few can boast such a successful career.
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