Monday 5th September
We had breakfast at the hotel this morning. It was the first time as I watched him, that I thought he wouldn't be able to eat by himself. We sat at a table by the window, looking out to the gardens. There were very few people in the dining room to witness his struggles. Those who were present didn't seem to notice. The problem wasn't just cutting up the food this time. This morning he could hardly lift the fork to his mouth. He rested between mouthfuls. It was a shock. He did it by himself in the end, very slowly. He commented on how cruel it was for God to have given him this disease - a man who loves his food, especially a full English breakfast. I had no answer for him.
We also learned today that when he is in his wheelchair and it rains, his legs will get very, very wet. We need a raincover I guess. Pretty obvious I suppose, but it's the first time it's happened. We got caught in a heavy shower in Lyndhurst and I hurried him back to the car. I felt in control but I forgot that it might have been a bit scary for Roch as I fairly ran along in the wet! I'm not sure he entirely trusts me with the control of his wheels. Tom is the King as regards wheelchair pushing. But the sooner we organise him under his own steam, the better.
Thursday 8th September
There has been a car parked outside our gate for two days and a night now. We are waiting for Richmond Council to organise our disabled parking space and we don't know when that will be. Apparently they have to put up a notice asking if anyone has any objection. I don't know how long that stays there, but they haven't done that yet. I can't help wondering - are people just stupid? There is a ramp with handrails from the door to the gate. It's not exactly brain surgery to work it out. Or do they just not care? It's such a struggle for him to get from the car now, walking up the road any distance. Yesterday he had to park about five doors away and he told me that an old man walking slowly past with some difficulty himself, asked Roch if he needed assistance. He didn't have to tell me that he refused the offer. I just hope he doesn't fall on the way.
Saturday, 10 September 2011
Sunday, 4 September 2011
In the New Forest
3rd September
So we made it to the New Forest and we really are in a forest, lots of trees and lots of ponies!
A real find this afternoon, a country pub called 'The Crown and Stirrup' (great name). We stayed awhile. Despite a step down into the pub and another up to negotiate our way out into the garden, he made it with no real difficulty. A cold clean pint was its own reward. Even my tonic water tasted a cut above the usual offering. Tall trees rose gracefully behind the garden and the late afternoon sunshine came slanting through the branches.
The hotel is more than satisfactory but falls short of excellence due to a slight shabbiness. Faded wallpaper and chipped paint can lend an air of 'shabby genteel' which is acceptable but a mouldy shower curtain? No excuses. The linen, however, is crisp and spotless and I can almost forgive the shower curtain given the flawless evening meal. Absolutely delicious.
Earlier today I wheeled Roch along the main street of Lyndhurst which has a seasidy air and an abundance of Antique shops. Purchases included the obligatory Saturday guardian, a bottle of Merlot and a bird feeder made from a coconut!
Over dinner we covered a number of topics. We reminisced about our honeymoon in Crete and discussed Roch's future medical retirement. We touched on how bizarre it is to know what will kill you. We discussed spasticity. We take issue with the Chambers dictionary definition of the noun 'spastic': 'A person affected by cerebral palsy' ok but not everyone who is spastic has cerebral palsy or 'Awkward, clumsy, useless'. Roch asked me if he could now be classified as a 'spaz' (not a very politically correct term, but pure 'Dublinese'). We debated. The symptoms are minimal but does the very presence of spasticisty symptoms mean he is a spastic? I would say not on the above definition but he argues that it makes him feel 'awkward, clumsy and useless' so he is a 'spaz'. It remains in debate.
We congratulated each other on the fact that we were sitting together celebrating our Wedding Anniversary for the third year running since diagnosis, and he walked to the table in the restaurant aided only by two sticks. We admitted to each other that at the time, we didn't think that three years down the line he would be a) alive b) if alive, walking c) if walking, talking. Pause for the clink of glasses as we toast the slow progress of the monkey.
He tells me that Donna (the Hospice Nurse) has organised a week long stay for him in the Hospice in January. It's meant as a respite week for me. I am shocked. It seems too soon but maybe by January I'll welcome it. I can't help feeling that someone else probably needs it more. We may not accept it. I tell him that a week in the Spring might be nice. I would think about going to France with Maura. He is anxious to assure me that he has my blessing for such a plan, just in case, when the time comes, he is unable to speak. Who knows what thoughts go through his head. Good God, Roch, I say. Surely that is not imminent? No no, he assures me. But just in case. We wonder if Donna thinks he's 'fucked'. The steaks arrive and after an initial struggle, he manages to cut up his by himself. I venture to have a glass or two of rioja and I think both of us are glad that the bedroom is only a few yards down the corridor. Duly replete, we retire.
Blog notes
I've been keeping Blog notes in a little orange notebook. Sometimes I feel like recording a feeling, a moment, but my laptop is not to hand or it's just the wrong time of day. So I decided to add a notebook to the contents of my already overloaded handbag. Here are some jottings from the past week:
30th August
This morning, as I was dressing for work, I heard the sound of things falling and rolling across our kitchen floor, to the colourful accompaniment of Roch's swearing. I was aware of a feeling of irritation. I was feeling tired after a restless night and anxious about the working day ahead. I made my way into the kitchen to see him standing unsteadily at the open 'fridge door, at his feet a sea of baby carrots. He told me to finish what I was doing first and then come back to pick them up and I automatically retraced my steps to the bedroom, mascara in hand. Then I thought 'What if he slips on one?' So I ran back and picked them up. I could tell how frustrated he was, not just by the swearing, which had ceased now, but by the silence in the room. He sat at the table, looking sadly out the window at our garden. The new handrails are in place on the ramps now. It was an essential piece of work. They are perfectly functional. But somehow they form a barrier between the house and garden. The garden doesn't seem accessible anymore. I guess this is how it has felt for Roch ever since he began having to use the ramp. Now for me there is a physical barrier and I have to use the ramp too (occasionally I duck between the rails when nobody's looking). I don't like it but it's a small thing, after all. I don't expect he likes it much, either.
Standing there in the kitchen I notice that Roch's finger nails need cutting and, conscious that the Community Nurse is coming later in the morning to take bloods (for testing at King's College, as he is on Lithium now), I insist on cutting them now. (I am embarrassed to think his personal care may look neglected). He requests that I leave one long for nose picking purposes. He says this to hear my scolding protests and I do not disappoint. I cut all his nails. I'm getting good at this. Just before I leave for work the Toshiba TV man arrives. The TV for the bedroom has been fixed at last. As I depart, I hear Roch apologise for the mess in the bedroom and he follows the guy into the room, stick thumping heavily on the wooden floor. I leave him to it.
As I drive away I am filled with a mixture of sadness, anxiety and relief. If feels like a kind of escape but I wonder which feeling will overcome the others when I get to work. In the event, at work I settle quickly to my tasks and manage to focus on work priorities. I have very little time to dwell on the events of my morning so far, or to worry about my husband.
31st August
Well, 21 years ago today I was the blushing bride and he was the (believe it or not) bashful groom.
This morning I helped him to button his shirt. He went back to work today after an absence of six weeks. He had a disturbed night. Anxiety perhaps? So progress was slow. To save time we showered together. Nice for him, nice for me. As this disease progresses, the dynamic of our relationship will change, is already shifting. It's important to retain the small daily intimacies, I think. More and more I assume the duties of carer but I'm still his wife. How much easier to accept assistance with hair washing (he has difficulty lifting his arms) in the shower when provided by equally naked wife! Very eco-friendly, as we save on water too.
1st September
I came home from work yesterday longing for some space, some time to myself. Work was hectic. In and out of meetings, more work generated by each. I find my new role challenging, but stimulating. I'm beginning to relax into it now, starting to enjoy it - but it's non-stop. I got off the train at Whitton, to pick up food for dinner along the way. I was surprised that I had the energy and the interest to think about it. For some reason, I quite fancied making rice pudding (comfort food? Memories of Friday mealtimes as a child - that gorgeous crispy baked skin on top. I loved to break through it with my spoon to the creamy rice beneath and smell the steamy sweetness. As I walked throught the quiet streets around our home, I made a conscious decision to 'pay attention'. I noticed the woodsy autumn smell (so early!), the pleasant cool air on my skin, the vivid colour of a single rose. Live in the moment. It doesn't come naturally to me. It's easier for me to walk along, head down, in a cloud of anxiety. Why do I forget that exercise helps, that just being outside can help?
Tell you what else helps - getting my hair done! Lovely visit to the hairdresser this morning - or should I say, my 'colourist'? She's really more like an old friend. Not looking quite so faded anymore. Thank you Gabriella.
2nd September
I was reading Eleanor Coppola's 'Notes on a Life' last night, a gift from a friend (many thanks L). I find we have a lot in common. I keep coming across passages which resonate with me. She says that she couldn't understand why she wasn't automatically happy when she married and had children. She consulted psychiatrists and psychologists, one of whom was a woman and asked what was wrong with her. She had it all, she told them - '...a loving and successful husband, a big house, healthy children. I was mystified by my depression. Not one of them said, "You're a creative person, you need to pursue your creative life or you'll get depressed."'
I'm not comparing my creativity to that of Eleanor Coppola, but I realise that at last I am trying to carve out a space in my life for my creative self, create a physical space (a refuge) where I can rest and work (I want to populate this space with beautiful things, possessions with particular value to me), but also forge some time, time to indulge my 'creative child'. I am doing this to survive. Ironically this will become more difficult to achieve with the passage of time. It will also become more vital to my well-being and the well-being of those I care for. (Eleanor Coppola is the wife of the famously creative Francis Ford Coppola and the mother of Director Sofia Coppola).
30th August
This morning, as I was dressing for work, I heard the sound of things falling and rolling across our kitchen floor, to the colourful accompaniment of Roch's swearing. I was aware of a feeling of irritation. I was feeling tired after a restless night and anxious about the working day ahead. I made my way into the kitchen to see him standing unsteadily at the open 'fridge door, at his feet a sea of baby carrots. He told me to finish what I was doing first and then come back to pick them up and I automatically retraced my steps to the bedroom, mascara in hand. Then I thought 'What if he slips on one?' So I ran back and picked them up. I could tell how frustrated he was, not just by the swearing, which had ceased now, but by the silence in the room. He sat at the table, looking sadly out the window at our garden. The new handrails are in place on the ramps now. It was an essential piece of work. They are perfectly functional. But somehow they form a barrier between the house and garden. The garden doesn't seem accessible anymore. I guess this is how it has felt for Roch ever since he began having to use the ramp. Now for me there is a physical barrier and I have to use the ramp too (occasionally I duck between the rails when nobody's looking). I don't like it but it's a small thing, after all. I don't expect he likes it much, either.
Standing there in the kitchen I notice that Roch's finger nails need cutting and, conscious that the Community Nurse is coming later in the morning to take bloods (for testing at King's College, as he is on Lithium now), I insist on cutting them now. (I am embarrassed to think his personal care may look neglected). He requests that I leave one long for nose picking purposes. He says this to hear my scolding protests and I do not disappoint. I cut all his nails. I'm getting good at this. Just before I leave for work the Toshiba TV man arrives. The TV for the bedroom has been fixed at last. As I depart, I hear Roch apologise for the mess in the bedroom and he follows the guy into the room, stick thumping heavily on the wooden floor. I leave him to it.
As I drive away I am filled with a mixture of sadness, anxiety and relief. If feels like a kind of escape but I wonder which feeling will overcome the others when I get to work. In the event, at work I settle quickly to my tasks and manage to focus on work priorities. I have very little time to dwell on the events of my morning so far, or to worry about my husband.
31st August
Well, 21 years ago today I was the blushing bride and he was the (believe it or not) bashful groom.
This morning I helped him to button his shirt. He went back to work today after an absence of six weeks. He had a disturbed night. Anxiety perhaps? So progress was slow. To save time we showered together. Nice for him, nice for me. As this disease progresses, the dynamic of our relationship will change, is already shifting. It's important to retain the small daily intimacies, I think. More and more I assume the duties of carer but I'm still his wife. How much easier to accept assistance with hair washing (he has difficulty lifting his arms) in the shower when provided by equally naked wife! Very eco-friendly, as we save on water too.
1st September
I came home from work yesterday longing for some space, some time to myself. Work was hectic. In and out of meetings, more work generated by each. I find my new role challenging, but stimulating. I'm beginning to relax into it now, starting to enjoy it - but it's non-stop. I got off the train at Whitton, to pick up food for dinner along the way. I was surprised that I had the energy and the interest to think about it. For some reason, I quite fancied making rice pudding (comfort food? Memories of Friday mealtimes as a child - that gorgeous crispy baked skin on top. I loved to break through it with my spoon to the creamy rice beneath and smell the steamy sweetness. As I walked throught the quiet streets around our home, I made a conscious decision to 'pay attention'. I noticed the woodsy autumn smell (so early!), the pleasant cool air on my skin, the vivid colour of a single rose. Live in the moment. It doesn't come naturally to me. It's easier for me to walk along, head down, in a cloud of anxiety. Why do I forget that exercise helps, that just being outside can help?
Tell you what else helps - getting my hair done! Lovely visit to the hairdresser this morning - or should I say, my 'colourist'? She's really more like an old friend. Not looking quite so faded anymore. Thank you Gabriella.
2nd September
I was reading Eleanor Coppola's 'Notes on a Life' last night, a gift from a friend (many thanks L). I find we have a lot in common. I keep coming across passages which resonate with me. She says that she couldn't understand why she wasn't automatically happy when she married and had children. She consulted psychiatrists and psychologists, one of whom was a woman and asked what was wrong with her. She had it all, she told them - '...a loving and successful husband, a big house, healthy children. I was mystified by my depression. Not one of them said, "You're a creative person, you need to pursue your creative life or you'll get depressed."'
I'm not comparing my creativity to that of Eleanor Coppola, but I realise that at last I am trying to carve out a space in my life for my creative self, create a physical space (a refuge) where I can rest and work (I want to populate this space with beautiful things, possessions with particular value to me), but also forge some time, time to indulge my 'creative child'. I am doing this to survive. Ironically this will become more difficult to achieve with the passage of time. It will also become more vital to my well-being and the well-being of those I care for. (Eleanor Coppola is the wife of the famously creative Francis Ford Coppola and the mother of Director Sofia Coppola).
Tuesday, 30 August 2011
In the News!
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.
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.
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