12 July 2012
We heard today from Addenbrookes Hospital that there is no need for me to attend anymore quarterly assessments. Alice was told that when a MND patient gets to this stage, in the disease, they usually carry out this assessment by telephone and then, if necessary, send out a palliative care nurse to attend anything which comes out of the telephone conversation, which requires following up. Whilst in many ways it is a relief not to have spent almost a full day on this assessment, a few hours of which may well be waiting for an ambulance to return to home, I cannot help feeling that it is now a stage, in the MND where there is little more they can do for you. Another nail in my coffin!
Aother sign that the end maybe nigh is ‘my lovely’ has begun to urge me to have a glass of champagne at six o’clock instead of my usual whisky. When I questioned this she said that I had 24 bottles left, but left unspoken, what was clearly on her mind, that I might just as well get stuck into them while I can!
Yesterday I was writing about readers, particularly new ones, making sure that they were aware of, and read, the Anecdote section of the blog as many of the personal stories recounted I believe shown an insight into my life which might not be so clearly presented from the daily blog entries themselves. I promised you that I would list all the anecdotes for you, so here goes.
Rugger Days – This is significant as it explains why, as a teenager, I was exempted all physical exercise due to being frail and how, after having my tonsils and adenoids removed, which had apparently been poisoning my system for years, I felt strong enough to participate in some sports or other. I was attracted to the idea of playing rugby, despite never having touched a rugby ball in my life before, with the Scottish father, I was drawn towards the London Scottish rugby club, which was at its zenith at the time. Read then how, after reading a book, How to Play Rugby Football, I presented myself to London Scottish and was immediately chosen to play in one of the senior teams with disastrous results. Read more…
Jamie Oliver -Eat Your Heart out – Regular readers will know that Jamie Oliver was born, or certainly lived, at the pub, at our gate, so I knew him for many years before he became internationally famous. This little story is a very amusing tale of my attempting to bottle 30 Kilner jars of plums, to be a surprise for ‘my lovely’ who was away at the time.
Following a 1940 wartime cookbook and not being able to get Kilner jar rings of the right size, this whole enterprise also ended up as a farce. This is one of the funniest stories I have ever recounted and I commend it to you. Read more…
New Year’s Eve – This covers how I celebrated New Year’s Eve as a student at the Chelsea Arts Ball to the other extreme at the Union Khormakser Club in Aden, the southern Republic of Yemen. Read more…
The Cricket Match – This is an absolute must for all those who follow cricket. Remember what I said in Rugger Days above, about not playing a sport because I will not physically strong. This story then recounts how I played my first game of cricket at the age of 70 in Kelara, an Indian state situated on the south west coast of Malabar. This is an absolutely hilarious record of this astounding match. It was all part of a wedding celebration for a couple of my good friends, the Brintons. Read more…
World Monopoly Champion. -Yes, I really was joint world Monopoly Champion in 1977. Read how to be one up on a one -up man (shades of Stephen Potter). Read how, over something like 12 months and eight rounds we found ourselves under the glare of television and radio at the Savoy, London battling our way through to a triumphal win. Read more…
Treading the Boards at Sadler’s Wells – for those opera lovers amongst you, you will scarcely believe how I played a part with this internationally known opera and ballet company with little knowledge of the operas in which I appeared, relying on my co-performer, Big John, to tell me what to do, standing in the wings each time we were due to appear. This is scarcely credible it is absolutely true. Read more…
China and Thailand – this is an account of one of my many visit to China, incorporating my lectures in Beijing. On this occasion the good Doctor Michael from Australia, accompanied me. From India we went to my favourite hotel in Thailand, the Anantara, in Hua Hin. Read more…
Mark Cato- the life of his carer in China and Thailand, October 20-November 5, 2009. – Unbeknownst to me, the good Doctor Michael was e-mailing, to his family, details of our lives together in Thailand. It was the other side of the coin. Where I seriously believed that I was being unselfish and considerate about disturbing Michael for something I could not manage to do myself, Michael saw a grumpy selfish old man who was a pain in the butt from time to time but still managed to enjoy a fabulous holiday. If you have the time to read this account following the earlier one-China and Thailand -it is an object lesson in the life of a carer compared with the genuine account seen through the eyes of the patient. Read more…
The Top 10 of Everything – a fascinating list illustrated this the biggest, fastest, the smallest, the heaviest etc an impressive list of currently useless facts, no doubt, useful in a pub quiz but, nevertheless, still worth a glance. Read more…
Bananas – I had absolutely no idea how incredibly good for you are bananas. In particular the vitamins and minerals they contain.
We have all seen the champions at Wimbledon, when the pace is getting hot, snatching a big bite of a banana, which must convert to energy in a very short space of time. I guarantee after reading this you will make sure that bananas form part of your regular daily diet. Read more…
Old Farmer’s Advice – this is a bit like old wives tales, many of which you cannot help believing there is some truth in them. For example, Red skies at night, shepherds delight.Red sky in the morning, shepherds warning. In other words, the red sky at night is an indication that the following day will be fine, as opposed to a red sky in the morning, which forecasts rain. A number of the more common ‘.old wives tales, I explained in the Old Farmer’s Advice. Read more…
Astronomers Select Top 10 most amazing pictures taken by Hubble space telescope in the last 16 years.- This is precisely as described in the title The pictures are truly amazing and can be instrumental in making you wonder about creation, the Big Bang, and the existence of God. Read more…
Dubai Fountain – This has to be the most spectacular Fountain ever designed and I very much doubt whether it will ever be surpassed in terms of size and spectacular patterns it is not just a single jet of water, but hundreds of them, in five circles, each of the jets as high as 500 feet, choreographered, with changing light colours, from over 600 spotlights, in a lake of 20 acres. It has become a tourist attraction in Dubai being played every night at a certain hour. It is played with a musical accompaniment from, amongst others, Andrea Bocelli Con te partiro (Time to say goodbye). If I had to list the 10 wonders of the world, today, I almost certainly have to include this incredible spectacle.
Somewhere, in his hundreds of pages of blog, I describe my very first game of golf when I had to ‘play myself in ‘with the captain and another committee member of the Kingston Heath Golf Club in Melbourne. The only problem was I had never really played the game certainly not to the standard expected by this rather grand club . I had only put my name down at the behest of one of my friends, who was a member, told me that the waiting list was at least seven years long, by which time I may well have taken up the game. Read more…
2 Comments
Hello Mark, I am still following your blog. I wanted to post something about Stuart’s last days, and particularly point out how marvellous the Hospice service was for us. It was only because we had Hospice At Home that Stuart was able to have his wish, to die at home. I hope that it helps someone. I wish you all the best in this last part of your life. You have touched many people’s lives with your honesty and courage, and have been a great source of help to us all.
I am writing this in the hope that it will help other people suffering from MND to realise that even though they are terminally ill, they can still exercise a lot of control over the manner of their passing.
I should say that Stuart and I have, for 30 years or more, supported the work of “Dignity in Dying” as we always believed that people should be able to choose the time and manner of their passing within a legal framework. Although this is not (yet) legal in the UK, we can now make a lot of choices through an Advance Directive, which is LEGALLY BINDING.
Stuart was a quiet man, with a great deal of courage, and it was this courage which enabled him to die as he did. Careful planning is required, and that means facing up to things sooner than perhaps you or your loved ones would like, and putting in place the mechanisms to make your death as easy as possible. I know that MND sufferers are terrified of choking, suffocating, or what really amounts to drowning in your own secretions, and I want to tell you that it need not be that way, and that Stuart died at home, peacefully.
Stuart had signed an Advance Directive (a legal document which has to be respected) some months before, refusing ALL intervention (PEG feeding, artificial breathing apparatus, tracheotomy, antibiotics, resuscitation) and saying that he would only accept treatment to make him comfortable and relieve distressing symptoms. He spoke to our GP about it, and lodged a copy with him. His specialist had a copy, and we kept a copy at home in a yellow folder (this is a scheme we have in our area, and it also contained a DO NOT RESUSCITATE form in case paramedics were called for cardiac arrest or pulmonary failure). He discussed his wishes with everyone at Hospice at Home (more of this later), the dietician, speech therapist, and anyone else in his care team.
He then put it to the back of his mind, and concentrated on enjoying the last few months of his life as much as his illness would allow. We had holidays with friends and celebrated our 25th wedding anniversary. And all that…….
Although his MND had started slowly with only his right arm affected (he was at first diagnosed as having had a stroke) and proceeded in a fairly leisurely manner for about a year, his decline then became more rapid, until he could barely walk and it was becoming difficult to perform most everyday tasks. When his swallowing became difficult, the dietician explained that this could go quite suddenly, and that at that stage, or indeed before, he would again be offered a feeding tube (PEG) which he had always refused, and that if he deteriorated to the extent that he couldn’t swallow liquids, then palliative care would be the only thing; he would be fitted with a syringe driver containing various drugs and could only survive a short time without taking in liquid.
He never faltered in his resolve, although we all checked from time to time to make sure that he didn’t want to reconsider either PEG feeding or breathing apparatus. When his swallowing finally went, and it DID go very quickly, the district nurse and the doctor explained again what would happen and asked if he was prepared for the fact that if he continued to refuse all treatment his life was drawing to a close. He said he was ready for that, and had been ready for some weeks. I think I knew this, as life was getting increasingly difficult, though he never once complained.
So this is what happened. He was made comfortable with diamorphine, and drugs to dry up secretions and to suppress anxiety. He was alert enough to see and know his family and friends for the first day or so, then gradually slipped into a deeper sleep, and died peacefully three days later.
We could not have done this without the help of Hospice at Home, our wonderful District Nurses, and some sleepovers by Marie Curie Nurses. All this was masterminded by Hospice at Home, who liaised with the rest of the team over dosages etc to keep Stuart comfortable.
It wasn’t easy, but it was what Stuart wanted, and his courage gave me the courage to share it with him. He was at home until the end, and there were only a few brief moments when he was not quite as comfortable as I would have liked him to be. Which I think is pretty good, given what it might have been like and given the difficult nature of this horrid disease.
I know we are very lucky to live in Suffolk, where palliative care is so good and the Hospice so well organised, and I acknowledge that this standard of care may not be readily available everywhere. But I want to spread the word that this IS available, and that you can make it happen if you are brave enough to prepare for it.
Stuart donated brain tissue to the Brain Bank at Addenbrookes for research into MND. This also needs careful planning in advance, and the consent and support of loved ones/next of kin. Tissue must reach the Brain Bank within 48 hours, so it is crucial that preparation is done and that everyone on the medical team knows about it.
I am very proud of my darling Stuart. He was exceptionally brave and steadfast in his refusal to accept any treatment to prolong his life. And all that in spite of (or because of) the fact that he loved life with such a passion. The quality of his life was what mattered to him, not how long it lasted. And broken-hearted though I am not to have him with me any longer, I know that at the end he got the death he wanted, and that I was with him all the way, and that will be a source of great strength to me.
Hi Mark,
I have been following your blog for a few years now, and enjoy your blog, and have also taken some handy tips/hints from it. Gary my husband was diagnosed with M.N.D Dec 2009. He had a foot drop, and was expecting a back operation. Since then, we had to move house, as we lived in a three level home, modify the car, find and buy a home that we could renovate for Gary’s on going requirements. Gary is in a wheelchair now, and his arms are weakening. Gray is 52 yrs old and we have two girls 16yrs and 14yrs. Gary is still able to work from home 39hrs a week, and I work 4 days. We are working through the night medication, as I am up with Gary 6or 7 times on a good night, turning him. However we had the best night last night , only turning him 3 times. We have introduced various pillows to alleviate the pressure on hips / shoulders. Gary takes morphine caps @ night, but they make his mouth very dry and makes him constipated. We have just recently had the hopsice involved, the nurses visit once a week, to try and get the sleeping, medication under control. If Gary has any issues through the day or night, the nurses will assist us, and he will be taken into hospice, while they get him stabilised, if need be. Gary is happy with this, as our public hospital, isn’t equipped to support people with M.N.D, and the hospice accomadation is like a motel, and nurses with attend to your needs 24hrs a day if need be. If you don’t mind, what combination of night medication are you on???. Very sleep deprived at the moment, although amazing as it seems, I just keep soldiering on. Gary and I have made the most of the time we have and continue to do so, just like you have. We live in Auckland N.Z. Best wishes to you, Regards Iris