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 â€˜ my lovelyâ€™ 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 â€˜ Saint Michaelâ€™ 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.
TheÂ Ramblings of a Carer following a further voyage to Thailand, October 2010 with Mark CATO.
Did you hear Markâ€™s incredible interview with Dan Gottleib â€œVoices in the Familyâ€Â Â WHYY RADIO. When asked how MND, in view of his now grim outlook and Â impending death, had changed his life; Mark characteristically, and calmly changed the interview to a discussion about â€œlifeâ€. What followed was incredibly inspiring with messages for all, as to the importance; the fun and gift of life.
Â Â Â Â Â Â Â Â Â Â Â Â Â Â We set forth for Thailand, Markâ€™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.
Â Â Â Â Â Â Â Â Â Â Â Â Â Â 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, â€˜Stuartâ€™ 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.Â 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.
Â He insisted, in spite of my protests, on wearing the kilt for the return journey too.
Â What is more he got his revenge at 36,000 feet over Budapest with the dreaded â€œI think I need a peeâ€. This always brought a tense rejoinder from the Carer. â€œA 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 â€œYou are the first Scot we have had on board wearing a kiltâ€!
Â Â Â Â Â Â Â Â Â Â Â Â Â Â His confidence was down. Arriving at Heathrow he announced â€œI canâ€™tâ€ 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 â€œGo on, just pretend you are parachutingâ€ 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 withÂ courage and skill but I always kept him in view. â€œI canâ€™tâ€ was more frequent this time. â€œHow is itâ€ I asked â€œfor a man who has taught me so much about, â€˜I canâ€™ is now talking about â€˜I canâ€™tâ€â€™? Of course he is painfully aware of his physical limitations and no answer is required.
Â Â Â Â Â Â Â Â Â Â Â Â Â Â 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 Â â€˜time was not my ownâ€™. 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.
Â Â Â Â Â Â Â Â Â Â Â Â Â Â .
Â Â Â Â Â Â Â Â Â Â Â Â Â Â 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. â€œI pay for these people-they should help-there was no need for you to come-I am a prisoner I cannot do what I wantâ€ 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.
Â Â Â Â Â Â Â Â Â Â Â Â Â Â His respiratory reserve is now minimal. This is fuelled by his anxiety and not helped by my rejoinder one evening. â€œit will be your chest which gets you in the endâ€ 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 â€œsit me upâ€. One way of getting me to sit him up during the night was the inevitable â€œI 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; â€œthree 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. â€œAnd you are a bloody professor and you cannot even cough properlyâ€ 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 â€˜survivedâ€™, just, for 2 nights Â before he was admitted to hospital for further evaluation. Â Subsequently the respiratory support device providedÂ for use at night has brought about a remarkable improvement. Both Mark and Alice are getting worthwhile sleep. I expect he will Â be less tired throughout the day.
Â Â Â Â Â Â Â Â Â Â Â Â Â Â 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.
Â Who could ever forget his rejoinder as we sat on the balcony overlooking the lagoon at Anantara:
â€œThis 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.
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 â€˜ my lovelyâ€™ but also anyone else who happens to get involved.