8 November 2010
Having resolved the problem of the respirator packing up in the event of a power cut I turned my mind to all of the other electrical equipment on which we rely.
I have already informed the electricity company of  my condition as this was advised by the district nurse. Last time there was a power cut we were off for around 28 hours and one of the last house to be checked over by the electricity maintenance crew.. Once we have completed a form, which is being sent to us, hopefully we will be given priority. Having said that one of the problems is that the power company tends to carry out maintenance in the middle of the night and gives no warning of short power cuts.
Bearing all this in mind I decided that we would resuscitate our own petrol generator, which I bought and installed years ago, but which probably has not had more than 10 hours use. It needs servicing and the little wood store, in which it is housed, needs fireproofing and a more efficient exhaust fitted. I was fortunate in getting the right man to come today to look at it and give a quotation for the generator side of things and recommend a carpenter for the other work. With any luck the whole thing will be up and running early next week,
The weather was absolutely filthy today – wet and cold with a blustery wind. It made me realise that my days of crossing the lawn from the house to the office are numbered. We had always agreed I would move into the house in the winter and I think we have probably reached that point now. I got onto my good friend Duncan who will come  on Saturday and move all the equipment over to my study. I shall miss my beautiful office and hopefully will be able to return in the spring. However, I suspect the next time will be in a wheelchair. Ironically, it seems to be my arms rather than my legs, that are making it more difficult to walk,  as I need to lean on the gutter frame and manipulate it over lumps and bumps. I know my arms are getting weaker because I was unable to complete one of the exercises this morning with my left arm which I’ve been managing to do for the last several months.
7 November 2010
Well we survived another night of fireworks and can breathe easy for another year. Dear Chloe. stayed the night and gave me a hand with some administrative paperwork in the office this morning. Then, together with ‘ my lovely’ we looked at daughter-in-law Kimberly’s beautiful photographs of their recent trip to America before finding listening to WHYY, Philadelphia, radio programme in which I participated, Voices of the Family. I had never bothered to listen to it before and I was quite amused by the way I seem to have twisted the team away from death to life.
Totally unexpectedly I received a note from ‘ Saint Michael’ giving his account of our recent visit to Thailand. I have reproduced it almost un-expurgated (my own comments being in italics in brackets). Much of it is lavatorial but I am prepared to share these very personal experiences with my readers in the hope that it might encourage some other person with similar problems to realise that there is always a way even if it is not perfect.
The Ramblings of a Carer following a further voyage to Thailand, October 2010 with Mark CATO.
Did you hear Mark’s incredible interview with Dan Gottleib “Voices in the Familyâ€Â  WHYY RADIO. When asked how MND, in view of his now grim outlook and  impending death, had changed his life; Mark characteristically, and calmly changed the interview to a discussion about “lifeâ€. What followed was incredibly inspiring with messages for all, as to the importance; the fun and gift of life.
              We set forth for Thailand, Mark’s idea, with the Carer a willing accomplice.
He is weaker and requires more assistance. His fear of falling is acute and real. He has no arms to protect himself and invariably in a fall strikes his head. Further, he then remains down until rescued.
              What does a Scotsman wear under his kilt? Well you might ask. For this was an Englishman with only a tenuous hold on Scotland, (what does he mean tenuous. I had a Scottish father) yet he was attired in a bright, ‘Stuart’ kilt. His idea, in order to facilitate the plumbing which lay beneath. The set up there resembled something of a garden watering system with plastic pipes, bags and little taps. Like a chain though, it was only as good as the weakest link and so it was that the pathetic button to which it was all attached was the weakest link. Consequently he arrived in Thailand with aplomb, but soaking wet.
 He insisted, in spite of my protests, on wearing the kilt for the return journey too.
 What is more he got his revenge at 36,000 feet over Budapest with the dreaded “I think I need a peeâ€. This always brought a tense rejoinder from the Carer. “A pretend one or a real oneâ€? It was real. Somehow with a heave I had him standing hooking for meagre support onto the seat in front while I dived under the kilt. A good result and what is more none of the other passengers were aware of the pantomime being played out beside them. He was right. The kilt was appropriate and I learnt to enjoy the happy stares and comments by Emirates “You are the first Scot we have had on board wearing a kiltâ€!
              His confidence was down. Arriving at Heathrow he announced “I can’t†when being eased out of the car onto the pavement. (Let’s face it, I am the best judge of when I am slipping down beyond the point of no return) h My rejoinder “Go on, just pretend you are parachuting†did not seem to help. Small steps up or down worried him but he was encouraged increasingly to negotiate them by himself. ( The reason being that my legs are so weak it is difficult to lift my foot more than an inch or two off the ground )Of course he did so with courage and skill but I always kept him in view. “I can’t†was more frequent this time. “How is it†I asked “for a man who has taught me so much about, ‘I can’ is now talking about ‘I can’tâ€â€™? Of course he is painfully aware of his physical limitations and no answer is required.
              Caring for such a soul is 24 hour work and quickly proved exhausting and on occasions, unfortunate displays of impatience on the part of the Carer. Long friendships however cope with such intemperate behaviour. The 5 minutes he was on the toilet, or involved with his computer were bliss and allowed the Carer to quickly look at headlines or some other activity. Reading was impossible and quite properly on such a venture  ‘time was not my own’. Mark, in his Blog mentions, the Barlows; John and Geraldine, from Cornwall. Lovely, happy, caring people who quickly appreciated our predicament and would care for Mark and allow me to regularly go off and swim. Bliss.
              .
              Clearly Mark has moments of great frustration. Once he called on one of the Thai lads, Beer, to help him move. Beer, quite correctly came and fished me from the pool. “I pay for these people-they should help-there was no need for you to come-I am a prisoner I cannot do what I want†and so forth. The poor fellow ranted on but finally calmed when pointed out he was in a hotel and not a ruddy rehabilitation unit or hospital.
              His respiratory reserve is now minimal. This is fuelled by his anxiety and not helped by my rejoinder one evening. “it will be your chest which gets you in the end†indeed that applies to many of us. So lying at night, (not by day or if he was otherwise diverted) caused acute stress with cries of “sit me upâ€. One way of getting me to sit him up during the night was the inevitable “I think I want a peeâ€. This involved lugging him upright on the bed then after a pause a further lug to have him standing. He can only pee when standing.
A chest infection on the second day revealed just how parlous his respiratory reserve was. Purulent sputum and a rattly chest reminded him of impending death and me, perhaps, that was I mad to have brought him so far. At home he would have been in hospital. In The Anantara, Hua Hin, I propped him upright and sat with him throughout the night. I endeavoured to teach him to cough properly; “three big deep breaths followed by 3 coughs in a row without a breathâ€. He never got it right and was content with noises from his throat instead of the good basal coughs required. “And you are a bloody professor and you cannot even cough properly†did not seem to help. He gradually improved and without antibiotics which were withheld for the trip home. He had no difficulty in breathing on the aircraft.
Back home, Alice ,clearly could not cope with his distress on lying down at night. They ‘survived’, just, for 2 nights  before he was admitted to hospital for further evaluation.  Subsequently the respiratory support device provided for use at night has brought about a remarkable improvement. Both Mark and Alice are getting worthwhile sleep. I expect he will  be less tired throughout the day.
              Once more Caring has proved a remarkable journey for the Carer. Hard, constant work, yet so rewarding. Wonderful and funny moments were shared often coupled with some whisky and his cigars.
 Who could ever forget his rejoinder as we sat on the balcony overlooking the lagoon at Anantara:
“This is all really beautiful; look at those trees and plants; the birds, fish and even these wonderful people- it is a sheer joy to be here with them- and- what is more they were all here and just as beautiful before this bloody MNDâ€
They lined up as we departed. Tim Boda the Manager of Anantara, other staff and of course John and Geraldine Barlow. Typical John kept plying me with questions. Realising the significance of our departure I was too choked up to answer. John pretended not to notice.
Michael Long.
Tappen 605. Kopparberg. Sweden 71494
It is quite clear to me that I have been suffering under the delusion that once the carer has got me up and dressed, apart from the occasional pee, I am not much of a liability. That simply is not true and I had to face up to the fact that the carer’s life is intricately bound with my own needs and desires and they are not free in anyway. I must also learn to show my appreciation more openly than I have done in the past now they need to wonderful people like Michael and ‘ my lovely’ but also anyone else who happens to get involved.
.
6 November 2010
Both my beloved it children came to lunch today. Son Smiler had to go back at teatime but daughter Chloe is spending the night and going back to London after  lunch  tomorrow. I think the dear old things are slightly concerned about me having read all this  business about breathing and so on.
We survived the fireworks last night but unfortunately the main show, I think, will be this evening, being a Saturday. I must say I’m a little annoyed that the BBC (or was in ITV) referred to yesterday as Bonfire Night. It’s no more Bonfire Night then 11 November, Remembrance Day, is Poppy Day. Will future generations even know who was Guy Fawkes and what  a scurrilous plot he and his co-conspirators were  hatching  on 5 November, 1605? Wasn’t the conspiracy to blow up the Houses of Parliament hatched in Cato Street? I in am not going to fill up my blog with a history of this conspiracy suggest any young reader who is interested looked it up on Wikipedia.
I had two nice comments on my blog today. One commiserating with me over the dangers of fireworks when one lives in a thatched house and the other wholeheartedly agreeing with me about the grossly obese people I wrote about. I’m glad I’m not alone in my right wing thinking in such matters. I had the impression that this new government was going to do something about this sort of situation ie. The minority of the 2.9 million registered disabled who are capable of doing some sort of work and not spend their life sponging on the state.
5 November 2010
The one night of the year that we regret living in a thatched house. We’ve been here for 46 years and always pray for Rain on 5 November. which is a bit spoilsport for the firework parties but a stray hrocket could set our roof on fire and the house would be gutted in no time. Indeed, it would not be the first time that it had been burned down. 50 years or so before we moved in the roof had just been re-thatched and there was a pile of waste straw waiting to be removed on the path by the house. The young boys, who were living at the time, thought it would be rather fun to have a bonfire. They did and the flames leapt up and caught the fresh straw on the roof with devastating effects. Fortunately, being a very old oak frame, made mainly from old ships timbers which themselves were probably 100 years when they went into the house, the roof went off like a chimney leaving the structure of the house pretty well unscathed. Nevertheless, this is not the sort of experience we want so we are always vigilant on Guy Fawkes’ Day.
Lying awake last night, breathing happily on my Nippy, I couldn’t help mulling over the experience I had had in hospital. I was in a six bed Ward and the other five beds were filled with gentleman who I can only describe as grossly obese. Most of them would have weighed more than twice my weight, I suspect between 20 and 30 kg. Now it is quite possible that one or more had some medical condition that accounted for their size but undoubtedly the bulk of them were self-inflicted. They were guzzling sweet sticky drinks, eating extra food, taking up to 5 teaspoons of sugar in their tea etc. One of was even sitting up in bed rolling his own cigarettes which, I suspect he smoked, when he disappeared  every couple of hours or so. All of these patients were on some sort of ventilation due to breathing problems, some certainly had diabetes and all, I suspect, were on disability benefit as most of them were relatively young men and they were far too fat to work. From the conversations they had, most of them seem to spend the day watching television in between the  times that their carers — paid by us — came in to attend to their every need. It might be an old-fashioned approach, but frankly, if I was a doctor I would be inclined to get these people to try to pull themselves together and go on a serious diet before I would be prepared to spend public money keeping them alive but then there are their human rights to consider apparently!
I have been receiving quite a lot of comments on my blog recently, all of them, I’m glad to say you were kind. I should perhaps explain what happens when a reader make a comments at the end of a particular entry. I sent an e-mail with the comment on it. I am then in a position to approve, edit or trash it. I’m glad to say I have never yet needed either to edit or to trash any comment. It is only after I approve it that it appears on the blog itself then there is a box for me to reply to that comment. As I never fail to respond to any such comment it is always worried me that the person who has made it may not be aware that they will receive their answer by going to their original comment on the date that they made it, within the blog where they will then see my reply. If the reader does not realise that this is a process they might consider that I have been rude enough to ignore their comic in some instances it is a cri de couer and I should hate that anyone should consider I was heartless enough not to respond.
Thank goodness, as I complete today’s entry, it is raining. Having said that we have a slight problem this year with Guy Fawkes Day falling on Friday. It means to worrying evenings as many of the firework parties will be tomorrow on Saturday.
4 November 2010
Last night was the first night at home with the ‘Nippy’ and very successful it was. I was very comfortable with the machine and although I woke several times it was for only brief periods. However, today I began to wonder what would happen if there was a power cut during the night, which happens here all too often. It happens not only in emergencies when a tree brings down the line or there is an accident but sometimes purely for maintenance. With the nose and mouth being completely covered and sealed by the mask, although there is apparently a valve which allows some air in, it is quite possible that being unable to breathe and with my useless hands not being able to remove the mask, and in any case lying flat and not being able to breathe, that could be the end of me. Having realised this I contacted Papworth hospital and they have offered to switch this particular machine for one with a backup battery. (This was about four o’clock this afternoon and by six and man was here with a replacement machine with a backup battery — how is that a service from the NHS. Pretty impressive I think)
On the same theme I have decided that we will resuscitate our generator which we have had for many years and never used. I doubt whether it has run for more than 10 hours in its whole life, however, it will require servicing and properly plumbing in,  as previously the exhaust fumes seeped under the door and caused my daughter and ‘ my lovely’ some distress. I have already been onto a local man and I hope he will call tomorrow and give me a quote.
We are so reliant on electricity here now with the bed, the chair, the hoist’s  and the Up-easy cushions, if the electricity went off my movement around the house would be severely restricted..
3 November 2010
I arrived home today, around six o’clock this evening, having spent three days in Papworth Hospital. The night after the good Dr left I spent sitting up and got practically no sleep at all. The hospital kindly responded to our call the following day and admittedly me as an emergency case. I spent the first couple of days having various tests not only breathing but also on my abdomen to try to ascertain why it was so distended and thus preventing the diaphragmatic muscles from doing their job.
On the last night in hospital I was put on to a ventilating machine (Nippy) which, in effect, takes over from your  diaphragm. The first mask they tried was one that just connected to my nostrils and blasted air up them. I found this very uncomfortable to wear and after half an hour or so my nose was so blocked with mucus it was bubbling. They then offered me a full face mask covering my nose and mouth which, in the event, I slept in and found it to be quite comfortable. Indeed, I probably had the best nights sleep, on and off, that I have had for some considerable time. This being so, and the outcome of the tests merely confirming that I am slowly deteriorating, the Dr was prepared to allow me to come home.
31 October 2010
Last night warned is very disappointing. It was a nightmare I had at least three or four panic calls to ‘ my lovely’. I simply could not breathe and needed to sit up. The good Dr is still here, who, I am glad to say, slept the best part of 11 hours whilst all this was going on they did come down in the middle of the night to check on me. The Dr is probably right when he says that a certain amount of the problem is in my mind but if you’re lying down panting for breath you get more and more panicky which makes you get even harder. It is quite clear that we must get onto Papworth Hospital tomorrow to see if we can bring forward my assessment, scheduled for 8 November. The point being that after tonight, once Michael has left ‘ my lovely’ will simply not be able to cope with me in his present condition. Perhaps I will need to get to Papworth for an overnight assessment went, I then suspect they would put me onto night-time oxygen.
 Having said that I feel fine this morning and spent a good time in bringing my blog up to date and dealing with the 150 or so outstanding e-mails which, for reasons I will not go into, I could not download in Thailand..
30 October 2010
The journey home went as smooth as silk. I drive from Hua Hin to the airport, transfers to various wheelchairs, whizzing through the diplomatic channels for security and passport control, making our connection from Dubai to London after a brief visit to duty-free and then a very comfortable limousine ride home – courtesy of Emirates – Â arriving in time for elevenses. Although, I was not able to take advantage of the flat bed on the aircraft, due to my breathing problem, I was reasonably comfortable and after watching a video on each of the legs, managed to snatch brief periods of sleep, so arrived home in reasonably good condition. Although we had been going then around 24 hours we picked up the day as if we had never been away, ignoring the time difference the so-called jetlag, and did not get to bed until 10 o’clock. This, of course, after our usual six o’clock bottle of champagne!
Having taken some considerable trouble to keep the blog running day by day, with  Michael doing the posting during this trip, I must admit I’m a little disappointed to notice that my readership has sagged from around 2500 each day to 2000. Maybe people are getting a bit bored with the whole thing, if so I’m sorry, I am lucky to be leading any sort of life at all, let alone an exciting one..
Whatever people think of the glamour of travelling to foreign parts there is no place like home and in my case no-one  I would rather be with than ‘ my lovely’. However, this is not to say that I do not owe an inestimable debt of gratitude to dear Michael for his constant care of me on this trip. I really don’t think there’s another person in the world who could have done it, or, would indeed have been prepared to do it, particularly, so uncomplainingly. OK, so he was a little tough with me from time to time over my breathing, but maybe that’s what I needed!
29 October 2010
Last evening we attended welcome cocktail party, held weekly to introduce new guests each other and normally held on the beach. Due to the uncertainty of the weather, management decided to transfer it it upstairs, to the area adjacent to the reception. This, of course, posed a slight problem with the wheelchair that was readily overcome by four pairs of willing hands, I is lifted in the air like some precious maharaja about to be checked for his weight in gold to distribute to the poor.. Or put another way, with this skill of the average removal man. Not exactly a gentle ride, but, at least, I was not dropped. The additional caution they exercised may they have had some to do with me mumbling words to the effect that I hoped that the hotel had adequate insurance! . .
Michael and I moved around the other guests trying to be  sociable and spoke to one or two interesting people but it was a very short session and very soon I was on the move again in my ‘sedan chair ‘ to be carried down two flights of stairs to access the restaurant. ..The nearest experience I’ve had to that before was in the hoodah on the back of an elephant, many years ago in a India.  I seem to remember, on another occasion, trying to play polo riding on an elephant, this time with saddle and  with an enormously long polo stick with which it proved very difficult to hit the ball  as elephants are not built  for sudden U-turns!
Having negotiated the ground floor we were then able to enjoy the buffet  supper, kindly provided by the hotel. .There was a wide range of food but I stuck strictly to Thai dishes. A pleasant, but not a particularly memorable, meal.
Today was all about packing, or, at least, it was for carer number two as I am quite incapable of helping. I was dispatched to the ‘baking platform’ Once the Barlow’s appeared and were able to keep an eye on me. giving Mick a free run without me irritated him by my supervision!
Our farewell tips were distributed to the most deserving staff, (there’s a lot to be said for tipping key staff the beginning) it was all too soon  for us to climb into our four o’clock taxi and head for the airport .One soulful glance  back, to the Anatara, aware that I was unlikely to  ever enjoy its beauty again
28 October 2010
Our last full day, we leave around 4 p.m. tomorrow. Again there was a tremendous storm last night so the rainy season clearly is not yet over. This unpredictable weather must make It extremely difficult for the hotel staff to plan their outside events such as tonight’s cocktail party and buffet dinner down by the beach. No problem, they have been in this situation very many times before. They seem to be able to conjure up an army of ants from nowhere, at a moments notice, and the whole caboodle can be transferred upstairs undercover. with the party hardly missing a beat ,
I have finished Sster and promised I would say what they thought of it at the end. If I had reservations or indeed did not particularly like the book, could I say say honestly with it being the product of a daughter of my dear friends Probably not. Anyway, who  am I to say whether a book is good or bad, the assessment is purely subjective, although the evidence, in this particular case could be said to be the immense success shown by the impressive number four early sales..
As I said, when I started reading it, I found it an interesting book an extremely well written. I was amused to see, what I imagined to be Richard and Judy (A level) type questions at the end under Reading and Discussion Points. There are so many more books I wish to read before I die, do I really want to spend many precious hours discussing a book I have already read? I’ve had the meal, I enjoyed the taste of the food, my appetite was satisfied, do I really need to sit back and analyse the ingredients and how they were cooked — it matters not to me. Having said that there were some interesting questions under these Discussion Points. They were put in such a way as to make me wonder whether even the author herself had doubts that she had got the format or structure right.
We never did discover whether Bee was suffering from a terminal illness, which is the impression given in the book,, if so, it must be a long-term illness as she did not appear to deteriorate too much during the period covered by the book.  (Of course, it may well be that this was explained and I missed it in one of those little periods when a 76,, terminally ill man nods, off for a few minutes, waking only to resume reading at a little lower down the page)
 Leaving that aside the one aspect of the book I did find interesting, if a little demanding, was the interweaving of thoughts; a letter to her dead  sister; her private thoughts; the interview with the Mr Wright; the present time, and so on and so on, in some instances it seemed to me a mixture of several of these in the same paragraph, but maybe I’m just imagining that or was not reading carefully enough or can be excused on the grounds without read it in Thailand where the all embracing warmth of the sun makes concentrating more difficult.. In most instances, of course, it was obvious which was which but one had to be alert, so in that respect we I did not find it an easy read. The idea of writing from different angles, of course, is not a new. What maybe new in this case was the interweaving of those different aspects. Indeed, one of my own book, The Sanctuary House Case  employs a similar technique  using four different fonts covering four different aspects.
Okay, so I am no literary critic. that much is clear. In summary, I did enjoy the book and I will unhesitatingly buy Rosamund’s next effort . I do hope that none of this sounds too pompous
To balance things up the least I can do is to repeat an extract from an e-mail I received from my dear daughter, quite out of the blue, as I was completing this entry — she loved the book.
Hi DadÂ
How are you enjoying Sister? I have just finished it and I have to say I was utterly gripped! So much so that I was reading until 1.30am this morning in order to find out what happened in the end! I won’t spoil it for you but I hope you are enjoying it as much as me. I look forward to reading her next book.
All I can remember of this book, during its gestation period, was, Rosamund’s mother, my dear friend Jane, charging weekly up to London one or two days a week to assume control of the household, to free her daughter to write and rewrite this first novel. Why then no acknowledge for Mum? (Or like the lack of explanation of Bee’s illness, did I miss it? -I did, it’s now been explained to me) If she was overlooked I suppose it is because we all take our nearest and dearest for granted! I have been told subsequent to writing this entry  that ‘the parents ‘ were mentioned in the Dedication for their lifelong support etc. Being an e-book reader of course I did not have that Dedication to hand but, in any event, it would be appropriate to mention that without Mum’s household supervision the book might never been written and it is my view that this would be best  amongst the other effusive Acknowledgements. But that’s just me, Rosamund.
D. Mark Cato
D. Mark Cato