Posted by DMC on Nov 11, 2009 in
Anecdotes
Now the carer’s point of version of the same trip
CATO Mark The life of his Carer in China and Thailand. October 20- November 5 2009
Hi all,
I have now taken full control of his bottom. I cannot go through another episode like the one at Dubai airport. His bowels are now regular. In China I dreaded the time during lectures he would have to go. The university provides only squat type loos. I had this vision of me swinging around with the crouching professor with first, his trousers going down the huge hole or perhaps me his carer, or possibly all of us!
Aircraft toilets are a breeze. I stand guard at the unlocked door and flip in and out as necessary and finally zip him up as required with me standing in the passage with my charge trying to shout instructions from within. “Careful of my willie” (Evidently it was caught once in a zip by Alice) or “too tight – too loose-or my shirt’s not straight” and so forth.. Always I am getting complaints “I am too hot” but the bugger insists on wearing a vest, shirt, tie and blazer with a (wilting) rose in the button hole and all this when we are struggling along in Economy, Air China with a bunch of indifferently dressed ‘peasants’.
Anyway in Thailand following a bowel action I thrust him in the shower and take to him and his bottom with everything I have. He protests but he now knows I do not tolerate smart English clothes and ‘dirty’ bottoms. Yesterday he escaped and had a bowel action in the toilet near our lagoon. Serves him right for not telling me for because of his useless hands he locked himself in. Fortunately this tropical toilet was open to the jungle on the other side and you can imagine our professor escaping through the jungle with his underpants around his ankles.
He is a sun worshipper, nude, in the afternoons, when in the complete privacy of his balcony. It takes me around 30 minutes to set him up.. First I keep a constant look out to ensure no one is watching this pantomime. Next is the 6 blocker – all over- “rub it well in- now the 50 sun block on my cheeks nose and forehead”.
I shoot this container, it is a bit like a gun. One minute I am dousing a plant or the next not the professor but his hat or glasses. I am getting better. Next, is an oil for his skin which he wants all over and for me then to “rub it well in”. That for his private parts I drop from a height and there is no rubbing business, hoping, with the last movement left in his hands, he can deal with that himself!.
Just now, prior to sunbathing, he wanted to be shaved off some body hair, explaining that “Roman gladiators had this done to them-by plucking while they were taking a Turkish bath”. His eyesight was tremendous as he surveyed my work. “you’ve missed that grey hair by my nipple” and so forth. It took a good 20 minutes and I had a distinct feeling of being a shearer.
The first day here in Thailand, yesterday, I was utterly stuffed as we had arrived at 03.00 a.m. from Beijing. I got the master into bed and unpacked his bag and was not into bed myself until well after 04.00. Up again at 07.00, as I have learnt to do all my things first as there is no time once I begin with him. I got him going by 08.00 but then had to feed him, at breakfast, as well as collecting fruit in a plastic box and orange juice for his lunch. Apparently he has done this for the past 10 years or so, so the staff are quite used to it.
It was 11.00 before I was able to leave him sun baking while I returned to my own devices. At 13.00 a yell across the lagoon, ( I leave my door open so as to keep an eye on him) indicated he was ready to return.
I rush down to fetch his things but again he had quickly escaped to have an outdoor shower. Unfortunately, in the process he splashed a group of nearby indignant German tourists leaving yet another group for me to placate. Last night he insulted a Dutch couple sitting next to us at the ‘Bam Bam’ street restaurant by telling them that their “language is simply disgusting”. Normally we have a drink at 16.00 but I note that the time is getting earlier each day. Whether it is gin, champagne, beer, fruit juice or even coffee I put it in a plastic cup with a top and straw. The straw is long and I have been quick to learn to keep it out of his way as he continually knocks the straw and stuff goes everywhere. I didn’t drink then, as with my fatigue, I would have been unconscious but he was able to put a few gins away without any effect.
After dining in the nearby town of Hua Hin, with him decked out in a large apron, a splint on his right wrist-and another on the left to hold a ‘pusher’- him smoking cigars quite regardless of others nearby – we return to our hotel.
More grog. I have to undress him and then put on his ridiculous night shirt with 20,000 buttons- put toothpaste on his toothbrush, “not the yellow centered toothbrush, that is for the sunshine in the morning” but the “green brush for night” and all this using his revolting electric brush (I plan to clean it soon). I set him up with a drink, and one for myself, and we sit on the bed and watch videos. Last night it was ‘The Young Queen’ about Victoria. Really enjoyed it as there was a lot about Albert who came from Coburg, a city in Germany with which I am familiar, through my friend Andy Schneider.
Great film, but my charge kept talking as each scene reminded his hyperactive and intelligent mind of something. Anyway Victoria had a ‘Mistress of the Robes’ and my master has since promoted me to ‘Master of the Robes’. This includes his laundry “It is too expensive to use the hotel laundry”. So I am into his smalls and everything, plus keep his room relatively tidy. His servant, me, of course, with no time, sends his stuff to the hotel laundry!
What an adventure. There is something compelling and good about this caring. He could barely exist now without help. His disease has progressed and he can barely feed himself. If we are rushing or he is having too much trouble I grab the food and thrust it into his mouth. I must remind him there is no need for him to put his tongue out quite so far as it looks grotesque and is unnecessary, reminding me of a baby magpie. You have to be quick too as he snaps down on his food and a finger could be crushed. Pills I am getting better at throwing them in.
Really though he is an incredible fellow and his lectures to 140 Chinese and international students in Beijing were inspirational. The Chinese students obviously love him and frequently touch him. He has tremendous respect for the young and these people sense it. They were incredibly moved by him coming in spite of his affliction and I could tell that, apart from the wonderful lectures, he has inspired them about living and making use of every second. As his carer it is fun to play some part in all this and even to have made his visit possible. He is now planning to return next year but I do wonder what his situation will be then?. We can consider this at the time. I can understand that Alice at home is enjoying the rest I can provide- a reminder perhaps that carers too require rest.
Bugger, he is calling again – it is 16.00 already. He wants ice and a drink. I must be off.
Hugs and love to you all,
Michael XXXXXXX
30 October 2009 Reply from Penny Long at present in Australia.
Dad – your travels together make for great, hilarious reading….. with loving under- currents…..Have just read it aloud for the second time to the family (Jack, Mary and Leo)..I..think all people, as, a vital life education, need to step into the carer’s-role!!! Imagine, that, instead of military service??? Just read ‘Tuesdays with Morrie’, a moving book but I must say, somewhat proudly, my life has somehow already been tuned to much of the meaning it conveys.
Much love to you and the Roman Gladiator,
Penny & Co!
P.S – Perhaps the Carer should put out a little snippet on his charge’s website….nothing too confronting and only with the Gladiator’s approval of course!!
Sunday 1 November 2009.
Well I have his bowels pretty much under control now though I need to cut back on his mango somewhat as he has me running a bit today. He calls when he is “ready” and, as a contribution, he has clumsily torn off a token mound of paper. He is keen for an initial flush of the toilet in order for me to avoid the gloomy mess in the bowl. However I retain a clinical interest in my work and steal a peak- feeling nearly as satisfied as his Lordship with a good result.
We finish with a clean with ‘baby wipes’ or if too bad he is thrust muttering back into the shower. I now run him as an extension of my own body and increasingly anticipate his requirements. In fact I retain that childish irritation when reminded of something I was about to do.
Yesterday he was out of synch with me. He pissed me off with his arrogance to others, insensitivity, intolerance and impatience. I can handle it, but I really get down when I see him doing it to others. So I had a downer and was abrupt with him and went through my chores in a mechanical fashion. Of course, knowing me as he does, he sensed something was wrong and continually asked had he said something to me that was wrong. I did not tell him, except to mention how in one group he said something about Muslims with others around, which perhaps even Muslims, might consider offensive. Also I have made him aware that not infrequently people close to us at dinner in street cafes move away when he attempts to dominate the situation.
Long swim ( I am back to doing many laps early each morning) and then back into my duties today. All is well and we are laughing and sharing as usual. It was an interesting experience though mainly from my reaction of gloom and where my chores were not the fun they had been or are again today.
The staff here like us and have asked us to join them for the special dinner tonight. We are chuffed by that.
The time slots when I have the master immobilised with sun baking are pure bliss for me. I am reading furiously and lie in the big couch overlooking the lagoon outside my room. In the shade of course, though with direct sun daily 10 minutes a side I am developing a healthy glow. The Asian food is really healthy and I am mad about the steamed rice, fish dishes and vegetarian food.
It is Sunday and we leave Wednesday,4th afternoon for the Bangkok airport, 2 ½. hours away by cheap taxi. Get to London about 07.00 a.m. Thursday 5th and I will go to Essex and “Lantern Thatch” with Mark and ‘hand him over’ to Alice. …..
I gain in strength with daily early swimming and the master I suspect is quietly envious as his body slips away. Up at 06.00 to walk alone on the beach then 30 laps in a tropical pool. I wake him at 07.20 give him green tea with a sealed feeder and straw, while he shaves and I return to wash, shower, dress him and before we depart for breakfast do his hair-his bloody hair. He always insists it is wetted, brushed and combed close and for formal situations I have to apply this terrible teenage type spray to hold it all in place. He constantly asks is it OK. I often confirm it is even though it might be sticking out from the sides giving him this mad professor look-which I think fits the situation anyway.
He can be incredibly impatient and intolerant though he says he is OK now and even Alice has remarked on his improvement. He was though clearly a bit hurt when I indicated he was now a B-, clearly a pass, but room for further improvement! He talked incessantly during that wonderful film “Crash” and at one stage was up and cleaning his teeth with the noisy electrical thing-next he has spilled all the pips from the regular mandarin I skin for him each night; insists I collect them all during the film-and they were everywhere.
Another night he dropped his cigar while smoking in bed. He was yelling blue murder for somehow it was under his back and my attention had been diverted by the usual and big blob of ash adorning the pure white bed cover. Anyway he missed all those wonderful nuances in Crash and then says he didn’t understand the film!
I have to be quick in town as he tires with the heat and I have little time to explore. He is bloody murder in negotiating for 120Baht (about $4.00) for the 10 km or so ride back to the hotel. He usually wins and those emotionally destroyed drivers who do get us back are resuscitated by me surreptitiously slipping them something near the correct fare. Money means much to him and like an automatic calculator he is always blurting out the Sterling equivalent of everything. He worries about the expense of every meal (most for both of us under $15 last night only $10.). He says he is not mean, and I agree, though at times you have to cross some sort of cattle grid to get to his clearly generous side. In all aspects of his life he is and has always been incredibly generous and in all those important aspects of life and not necessarily financial. I, along with others, continue to benefit with this generosity of ‘life’.
He is sun baking again with i-pod music which I set up for him. I then have to order ice for drinks for when he re surfaces at 16.00. Then it is all go until I tuck him into bed following the film at about 22.30,-switch out the lights then like a flash, next door to my room for a read.
Incredible fun and a unique experience-particularly with someone whose mind is so sharp and enquiring. I have an hour of bliss ahead. Must go.
Love from a carer (for there are many of them and the place would not function without).
XXXXX
Michael
Tuesday 3 November 2009
The hotel turned on a lavish feast to celebrate the Loy Krathong Festival. My master tore into the white wine from Chile and possibly overate, leaving him a hot sweaty mess. Not though, before we both were able to celebrate the lives of Jenny, my sister and Lars Aby, from Sweden both of whom had just died and who had been responsible for profound changes in my life. The hotel staff had produced a little float of flowers adorned by incense and a lighted candle which we launched and it floated away into the night.
It was appropriate too, that the candle would flare and die away only to flare again and this went on repeatedly for the next half hour. We were both sad with lumps in our throat and Mark was strangely silent.
His legs are definitely weaker. Following the feast he was impatient and wanted to go ahead to the room. I gave him the card key and had some misgivings of leaving him alone. Minutes later as I approached his room I found him a whimpering mess, crumpled up, impacted in the corner facing the door. He was frightened. I hoisted him up from under his arms. Evidently he had dropped the door card key and was endeavoring to pick it up when he realised he couldn’t move and was impacted, facing the corner.
His arms are useless and his legs weak, creating a near impossible situation for him. This is evident too as he climbs into a ‘took took’ when frequently he folds onto the floor before he can be rescued and plonked on the seat by me, the startled driver or a passer by. He has trouble now covering himself in bed and tends to roll out onto his knees as he leaves bed to do things. Frequently now, I see him in a praying position, with a bare bottom and the ruddy night shirt somewhere around his chin. I have suggested that as he is in the praying position it is a pity to waste it and that he should offer a quick prayer or two as he passes!
Yesterday when I called in to get him up there was blood everywhere. He had fallen out of bed, and struck his head on the corner of the bedside table, while trying to get up during the night for a drink. A shallow laceration on his right cheek will surely cause Alice some concern and possibly a rebuke for me when I return him to her tomorrow.
In spite of these difficulties his life and mine continue with hope and a sense of fun. Undaunted he continues to record his day to day life for his blog (www.dmarkcato.com) and always there is this tremendous enthusiasm to instill in others the fun which remains in a disrupted life. Constantly he is inventing devices not only useful to him but for others who might be disabled.
For ‘The Carer’ (I have elevated myself now to capitals), it has been a profound experience to be with him over the past two weeks. Apart from the occasional periods when I want to ‘kill’ him (and like a ritual he does bury his head in a basin of cold water every morning-making such a task easy-and we laugh about that) I am amazed at how the effective Carer grows into the life of the one being cared for. Just like a surgeon and good surgery you develop a rhythm and move with a minimum of fuss to the task. Anticipation of the needs of others appears the key. In the end you become a team a bit like an effective marriage. Those being cared for are very much part of the team.
He has said repeatedly how Alice and I react similarly to many of his situations, even saying the same things! This morning he paid me the best complement ever as quietly and patiently I was going about my duties. “Thank you my lovely” he said absentmindedly confusing me with Alice. As usual we fell about with riotous laughter.
And so now at the airport in Bangkok our flight is due to depart for London via Dubai. I have kept the mango down and here’s hoping.
Lots of love and hugs to you all,
Michael XX
Penny 6 November 2009
Well Done Michael!! And Well Done Mark Too of course (shall I give him more or less or the same exclamation marks??…….more is only fair after all you leave his sickness today……!!!)!!!!!
It’s been a wonderful story to follow ’cause the compassion keeps coming through too……so what we get a glimpse of, is this ‘curly-leaf’, ornate personality bravely and somewhat(!) loudly claiming/igniting his corner of life determinedly with what ever resources are available to him………and we get a good glimpse of you too which is extra good!
…..
Hugs, Penny & Co
On 06/11/2009, at 3:50 AM, Michael Long wrote:
Mark,
Letter to Mark Cato from Paris 7 November 2009.
That was one of the most incredible few weeks ever. You are an inspiration in every aspect. Not only have you, (and continue to do so), greatly enriched my life you are doing that for countless others, including those wonderful Chinese students. I know this will continue right to the end-whenever that might be.
You were an only child but now you have a ‘brother’-me- for that is how we will continue. It seems appropriate after knowing one another for more than 54 years.
When I arrived to enter the Paris Metro last night my pockets were picked with a cleverly contrived maneuver. The man was “helping” me through the turnstiles and I even thanked him and went on myself to help someone else. Immediately the bank in Australia was onto me trying to confirm a recent purchase attempt and their card and all the others were cancelled. My drivers licence and Hertz and Avis cards have also gone but try as I have there seems no way to cancel them until their offices reopen on Monday! Anyway apart from wearing safer clothing it highlights for me that there can be a vast difference between “helpers” and “Carers”- they are not necessarily the same!
I am pleased about you getting rid of those old computers. No doubt you will plan your room at home and just how you will move about downstairs and the bed well before they might be required. You might need a wheelchair too which has to negotiate various threshold about the house and without. Planning does not mean you will need them and perhaps the reverse will apply. I leave all this to you but fully expect to see you in blazer, tie and wilted rose right to the end. Simply, some things can never be changed.
Anyway thanks for the magic and the sharing.
Love,
Mick XXX
PS Those letters written to my family are attached. Now that I have safely left the country it seems safe to send them!
Letter to Mark after speaking to son Tom, November 10 2009
Mark,
I have just been speaking to Tom. He was really moved by “the letters”. He is a real giver and I find him as a result thinking of doing some quiet charity work in Thailand or I suppose any other country. He just wants to do it quietly without fanfare or reward save that from the intense pleasure you find in caring for others. Anyway it is an example of what you are achieving by yourself and through your friends. Just thought you would like to know.
XXX
Mick
The ‘Cared For’s’ Ripost.
As the reader will have noted, many of the good doctor’s events, on which he commented, were a mirror image of mine, if from the other side of the fence, so to speak. He is entitled to use hyperbole and, indeed, has made ample use of it as, no doubt, as I do myself from time to time. I will neither defend nor comment on the isolated severe criticisms made of my character. If that’s away my friend sees me then sobeit. To his credit he has not allowed such defective characteristics to interfere with our friendship. What I found fascinating about the doctor’s account is that where I saw myself as containing my innate impatience and, most of the time trying unselfishly to consider my carer by delaying requests to what I thought was a more convenient moment, this clearly, is not the way the good doctor saw it.
In a nutshell, I don’t think either of us, particularly show up well from this exchange; me as dominating tyrannical control freak and the good doctor as a passively irritated carer who doesn’t seem to have appreciated how immensely grateful I was for his wonderful care. Densely will it affect our friendship, certainly not – not after 54 years – but has the good doctor a future as my carer, even for brief periods? – time will tell, but I hope so.
Tags: carer, China, Thailand, weak hands
Posted by DMC on Nov 21, 2009 in
Diary
To while away the journey to London, yesterday, I started a new book that my good friend, Dr. Michael Long had sent to me – Tuesdays with Morrie – I finished it this morning. At first sight a strange choice as it charts the death, through MND, of an old professor, the medical side albeit not making very pleasant reading. However, the book is really much more to do with the relationship of a young student with this professor who helps him to see the world as a more profound place, giving him advice, and guidance, from time to time. In the last 14 weeks of the professor’s life they discuss a series of profound questions. I had intended to quote an aphorism from the professor from each of those Tuesdays, which neatly sums up the purpose of the book, the publisher is politely informed me that it is not their policy to allow quotations from any of their publications.
Before the beginning of this year of Tuesday meetings with the student, a feature article was written about professor, entitled A PROFESSOR’S FINAL COURSE:: HIS OWN DEATH
On the first Tuesday, the professor and student spoke about ‘the World’. Interestingly the thing that concerned the professor more than anything else was the day when he could not wipe his own behind,. it was, as he said, the ultimate sign of dependency (This is precisely the same matter which has concerned me more than anything else as can be seen earlier in his blog – and indeed has come to pass these past few days). On a more profound level, on this topic, the professor suggested that the most important thing in life was to give and receive love.
When asked whether he ever felt sorry for himself the professor agreed that he did sometimes in the morning, when he moved his hands around his body and realized what he had lost. He even admitted to a good cry now and then after which he concentrated on the good things he still had in his life, in particular, the people who came to see him.
The following week when they spoke about Regrets, in particular secrets that had been kept hidden, the professor suggested it wasn’t it something that everyone worried about?
The fourth Tuesday’s topic was about Death Morrie suggested that we should prepare to die and fall are the Buddhists who ask themselves every day, is this the day I die?; and question whether they are am I ready; have done everything they need to do and become the person they want to be?
The next topic they discussed was The Family. On this the professor said that everyone needs some foundation in life and that was the family.
This had become clear to him since he had been ill. Without the love and support from a family you have nothing.
As each week passed the professor’s physical condition deteriorated and he became totally dependent upon his carers whilst remaining philosophical about his inevitable forthcoming early death. At the sixth of their weekly meetings the chosen topic was Emotions. On this the professor was clear that one should not hold back and not be afraid to go through them and not be fearful of the pain that it might cause.
By the seventh week Morrie had lost his battle – someone was wiping his behind!
Appropriately, therefore the discussion was about The Fear of Aging, which Morrie said that he actually embraced, rather than feared. Quite simply if you stay young forever you would always be ignorant. To age was to grow and lead a better life as a result.
On the eighth Tuesday Morrie was having one of his better days and they spoke about Money and the disillusionment which follows from wanting more and more things; more money; more property and so on the reason for this, the professor suggested, was that these material things where a substitute for love or tenderness or lack off friendship.
On the ninth Tuesday, after being lifted from his bed, and deposited amongst his books and papers in his study, Morrie typically found something philosophical in this. and suggested that bed was synonymous with death. He wasn’t worried about being forgotten after he died because love would keep his memory alive.
On the tenth Tuesday, Mitch Albom, the author introduced his wife to Morrie for first-time. This inevitably led to a discussion about Marriage. The professor felt that most young people today found it difficult to form a real loving relationship as today’s culture meant they did not really know themselves and therefore could not know what they wanted in a partner. Under such circumstances any marriage was almost bound to fail.
By Mitch’s eleventh visit the professor was close to the end and predicted he would die from choking. Nevertheless after having settled him down they spoke of Culture. and the inherent goodness of people, which, Morrie suggested, was only lacking when people found themselves threatened.
Morrie’s take on the twelfth Tuesday was that before you die, first to give yourself and then others.
By the thirteenth Tuesday, as Morrie was in a bad way this lead to a discussion about what he would considered was a perfect day. In the event, it was pretty much doing what he had done when he had been healthy. His morning exercises, a good breakfast, perhaps a swim and lunch with some friends. Then perhaps a walk in the garden, observing nature before an evening meal in a splendid restaurant, dancing the night away.
The following week was Morrie’s last. He was in a coma for two days and then stopped breathing.
I shall refrain from commenting on any of the topics discussed between the professor and his student and leave the reader to draw his own conclusions, from my blog, as to how I would approach such profound issues. However, I will say this. The professor was very courageous and accepted his illness without complaint (accept occasionally at night but then, isn’t this the worst time?) He acknowledged all the wonderful things that he had experienced, and all the love that he had received, and was still receiving, right to the very end. In that regard, despite suffering from the same illness, I did not find the book to be distressing and would recommend it any other MND suffers who might be inspired by the professor’s philosophical acceptance of this insidious disease.
Tags: books