Last words

Mike died peacefully early on 20 February 2019 in Sue Ryder Hospice.  Just before midnight, he asked for the nurses to remove the ventilator and he said very clearly (and in a much stronger voice than heard for several days) – ‘Tomorrow I am going to play the piano’.  The nurses asked him if we wanted to listen to his music and he said ‘No, tomorrow I am going to play the piano’.   He thanked the nurses, took 4 deep breaths and died peacefully.

For us, those last words are his final gift to us – he was certain he was going to heaven and ….that there would be a piano.

He endured MND with grace and bravery and was loving, kind and servant heart to the end.   We are so grateful to the amazing care and compassion at Sue Ryder – it was incredible and for the kindness and love shown to him by family, friends, colleagues and strangers.  He met some wonderful people over the past 11 months – and had some very special, tender times with family, extended family and friends.

There will be a private cremation and a memorial service – details to follow.  His detailed wishes for the memorial service are quite a co-ordination challenge.

Thank you for reading and commenting on the blog – it gave Mike a huge deal of pleasure.

‘I know that my Redeemer lives, and that in the end he will stand upon the earth.  And after my skin has been destroyed, yet in flesh I will see God; I myself will see him with my own eyes – I, and not another.  How my heart yearns within me!’ Job 19:25-27

Tessa

 

 

 

 

To do or not to do…

Trying to do what I want and need to do becomes increasingly hard. I have restricted use of limbs, mainly fingers and some use of my head, although I retain the ability to think intelligently and enjoy eating. Restriction of limbs whilst vastly frustrating still allows me to continue with my artistic, intellectual, comic and social interactions. With the best will in the world I can still discuss the finer points of a classical sonata form, a baroque fugue or impressionist harmonies; however the pace of such is becoming less instinctive and more time consuming. Even conversations with visitors inevitably take longer, as I need to pause in many instances to regain breath mid-sentence. Obviously not ideal and frustrating, but still achievable, and I am incredibly grateful for the patience of all my visitors and readers. The ideas remain but the speed of communication becomes less rapid, the responses to email and all other forms of e-communication now rely largely on a scribe. My days however are spent in intellectual activity: listening to music, listening to novels and stories (as audiobooks), listening to the radio and discussing with visitors as they appear. I can still follow a musical argument or tonal structure but may find it takes longer to explain and discuss. This allows my intellectual skills to remain sharp. I still enjoy indulging in comedy on Dave such as QI, Would I Lie to You, Top Gear (old version only!) Have I Got News For You, and Taskmaster – all uniquely funny and witty in their own ways, if a little irreverent. This brings much laughter, personal and shared. Economics and politics hugely annoy me at present, and I am much better engaged with an audiobook, Radio 3 or Songs of Praise. All in all, I have many fulfilling activities and you can add to this the delight of personal visits.

This week I have especially enjoyed Murray Perahia’s French Suite No 5,  a performance of Beethoven’s “Archduke” Trio performed by Isabelle Faust, Jean‐Guihen Queyras and Alexander Melnikov; and I’m greatly looking forward to watching the Six Nations game later!

Remember, every day is a gift from God to be used to its full.

Blue Monday

I know Blue Monday is meant to be the most depressing day of the year but I really don’t think so. We had 3 brilliant weeks when I was able to be at home as well as 3 beautiful days over Christmas when we all enjoyed the festivities and joy of Christmas together.

Such a joy and blessing. During that time we shared presents and our normal round of family board games. Once the girls went back to London we were supported by the amazing team at Flexicare and the Palliative Care Team.  Tessa worked heroically to make the days and nights as normal and easy as possible. However, my rapidly declining breathing began to take it’s toll. Thanks to speedy action of the Palliative Care Team, a space at Sue Ryder became available at short notice. This led us into a very difficult decision- do we maintain our independence and homeliness supported by our magnificent carers or take up the offer of the medical safety net and super care provided by Sue Ryder?

On balance, the conclusion was clearly that the only way forward was the safe option so I now find myself in the full protection of Sue Ryder,  Leckhampton Court.  Here I am able to relax and listen to music, read my bible and grandly receive visitors much in the way my Tudor forebears might have done and also be protected from the arguments of Brexit. I am also grateful, that at this stage, I can fully enjoy eating and talking!

So far today I have heard Rachmaninov’s cello sonata and Mozart’s quintet for piano and wind – both of which I have loved performing.

Blue Monday – I think not but I leave you to decide.

Remember as in Philippians 1.27- but whatever happens to me, you must live in a manner worthy of the Good News of Christ….

 

 

The 12 days of Christmas

The 12 days of Christmas have come and gone and we are now well into the year 2019. I am still delighted to have spent Christmas with the family and that all three of my Christmas carols were performed and enjoyed by many performers and worshippers. Thank you again to everyone who has been involved in this and for the way in which you have brought attention to MND and the Sue Ryder hospice.

I was discharged from the Sue Ryder Hospice just before the New Year and despite the short notice all care requirements were fully in place and I am now able to have something of a normal life back at home. I am incredibly grateful to everyone at Sue Ryder for their amazing care whilst I was there and for their continued support in terms of getting Carers involved. The care team have settled in really quickly and provide superb care. The level of professionalism and friendship and devotion to the most important aspects of caring are brilliant. They cannot do enough to support my needs and therefore those of the family. They have a flexible approach which means that if we need extra time it is always available which makes planning much easier. There is however never a sense of clock watching as the carers seem to judge exactly how much time they need for a job with a naturalness that leaves you feeling fully at the centre of the care.

Things continue to progress with MND and very weak hands and arms are providing quite big challenges. However I am working hard with voice activation and eye control in order to complete as many things as I want to. I am still working at my composition even though it takes a longer time. I am really enjoying using Alexa for listening to music and audiobooks to continue my reading. A relatively large backlog of appointments awaits me including those with respiratory team and endoscopy department at the hospital as well as having to reinstate a number of OT appointments for seating use of slings et cetera.

I have currently been struggling a bit with digestion of food and with breathing which makes things tricky but a combination of medication and use the ventilation is helping. This then gives me further time of high quality and some energy when I can work at my music or other things. Afternoon rest is in bed and a really good time for catching up with reading and listening.

New Year Resolutions. My resolution for this year is to make sure that I remember with gratitude all the good things I’ve been able to achieve and to remember and be thankful for all the kindness, care and time that so many people are investing in me at this most difficult time. What ever happens from now onwards I have to trust that God is in control of the situation.

Some firsts at Christmas 2018

This has been another busy week with a number of really interesting events going on. Last Friday I was privileged to receive a visit at Sue Ryder from his Royal Highness Prince Charles who visited the hospice and spoke with several patients myself included for 10 to 15 minutes and I was really impressed  with both his manner and also his knowledge and passion for the arts. I was particularly pleased to hear him talk about his fears for state lack of support for the arts in general. He himself has already put some projects in place in Scotland to try to help. He was urbane and polite and most importantly really interested in everything patients here had to say.

This Friday I was very lucky to be invited to the High School for Girls carol service in Gloucester Cathedral. Having taught at the school previously it was a real pleasure to be invited back to hear a performance of my carol Sleep Little Jesus.  The choir directed by Debbie Day were in superb form and produced a performance that was both memorable and emotional but also expressed exactly what I had intended for this piece. I am really grateful for all the work done and amazed that they raised  nearly £800 for MNDA in Gloucestershire. It was great to meet so many former colleagues.

Tonight I will be going to Painswick church to hear a performance of my other carol In Excelsis Gloria. I’m looking forward to this very much and offer the Church Choir my thanks in advance.

I have also received a lovely recording from Malvern of my more complicated Carol in four parts Adam lay ybounden.  Again it’s been a real privilege to hear this recording and I’m really grateful to everyone at Malvern College who took part in this and gave up their time and particularly to Jonathan Brown the Director of Music. All this activity has really got me into the Christmas spirit and I’m really pleased that my wife and both children have been able to share in this. I’m now looking forward to my children recording my virtuoso duet for cello and violin.

Modern care with traditional values.

After a few difficult days at home, I have been at the Sue Ryder hospice at Leckhampton Court in Cheltenham for a couple of weeks undergoing something of an MOT and service!!
I know that some people find it difficult to come to terms with the idea of being at a hospice and using palliative care, seeing it as a sign that you are accepting that the end of life is near. From my experience, the vast majority of the work at Sue Ryder helps you to deal with and solve very real current problems in order to enable you then to return to “normal” life in a more prepared and comfortable manner.

The hospice at Leckhampton Court is situated in idyllic countryside with superb views and wildlife. This however pales into insignificance when compared to the standard and sympathetic approach of the nursing care. Staff are always prepared to go the extra mile at whatever time of day or night to ensure the well-being of patients. Doctors and nurses alike seem to take full responsibility for creating a team environment in which all staff (medical and all support staff), volunteers and patients are valued highly and the main aim is to give patients the best possible care and attention. To this end staff deal with patients with professionalism, sympathy, sensitivity and humour when appropriate. My time here has certainly had its fair share of laughs. Whilst the building retains its Tudor character, care could not be more modern in its approach whilst still keeping traditional values with individual patient’s needs being central.

My wife and I could not be more grateful for the all-round care provided, not only medical and palliative but also the help with getting care on discharge. I should also add that the day hospice has also added a hugely positive support over many weeks.

Remembrance and Christmas

It is quite a while since my last post and I seem to have been  very busy – maybe everything just takes longer!

We enjoyed quite a bit of the Remembrance day commemmorations both on tv and the parade in town. We were also able to get to Johnny Coppin’s concert in the Cathedral-  a refreshing mix of Gurney’s poetry and Coppin’s own music. There seem too have ben an increasing number of medical appointments, culminating in the installation of a ceiling hoist which has made transfers even more safe and efficient.  My wife has found it much less clumsy and has managed in the extra time to learn how to diagnose error messages on the powered wheelchair and then how to fix the problem -a big step up from cat flaps for sure! She’s also trying hard too keep on top of the now endless (and beautiful) fallen leaves in the garden.

My composing continues in the background and I am finding instrumental works take much longer to create and refine once you start work without  a text. I am pleased to know that a number of groups are hoping to perform some of my carols over the next few weeks – and several people are looking at raising money for the MND Association.

We’ve always joked about how early the shops start stocking Christmas things, and how ridiculous it sometimes seems. I personally love Christmas music – so many memories of singing or conducting in Cambridge, Gloucester Cathedral, Bath Abbey and Malvern Priory over the years. Amazing beautiful music by David Willcocks, Herbert Howells, John Rutter, Britten, Bob Chilcott and many traditional goodies.
This year I may be personally rivalling Sainsbury’s and Tesco’s by getting three carols written before Halloween! I am hopeful too that a couple of them may even get public airings – not the original aim but a huge boost! To a certain extent this shows the progress that I’ve made creatively, as I’ve not just overcome my reluctance to compose, but that I’ve also begun to find a musical voice that I’m partly satisfied with. Two carols have been  written for upper voices or children’s voices, whilst the 3rd has a more complex harmonic language and is set for a cappella SATB and involves some unusual clashes and resolutions that I remember enjoying as a singer!!

My thanks to you all and to everyone who is reading the blog and sharing it. I am posting scores of three carols here so please do have a look and if you do decide to use just let me know.

Here are the three carols:

Sleep my little Jesus

In Excelsis Gloria

Adam lay ybounden

Inversely proportional?

At a time when I am being massively enabled and supported by technology – for example powered wheelchair and wheelchair accessible vehicle, better resources for the bathroom and really good support for my musical skills (including Sibelius software for my composing, eye control in Windows10 for when my arms tire and a recent thoughtful gift of an amazon echo so I can now do much simply using voice control), there is also an inevitable inverse proportional ability to make full effective use of them and the pressure put on my wife in helping me – you know the sort of thing like when you’re on the phone and you need to make a note then “The availability of a ballpoint pen is inversely proportional to how badly it is needed.” There is also sometimes the sense that you are running faster and harder but not really making the progress you expect – rather like in the following story (sorry it’s a bit tasteless!):

There was a party in the woods and after a sudden huge downpour of rain two young men ran away from it for about 10 minutes (still in the pouring rain), finally reaching their car. They jumped in, started it up and headed down the road, laughing and, stupidly, still drinking beers.
Suddenly an old man’s face appeared outside the passenger window, and he tapped lightly on the window! The passenger screamed out, “Help! Look at my window!!! There’s an old guy’s face! Is this a ghost?!?!?!” This old man kept knocking, so the passenger rolled his window down and said, scared out of his wits, “What do you want???” The old man replied, “Do you have any tobacco?” The passenger, terrified, offered him a cigarette and yells to the driver in terror, “Step on it!!!”.
Now going about 80 miles an hour, they calm down, and start laughing again. Then suddenly AGAIN there is a knock, and there is the old man again. “There he is again!” the passenger yells. “Well, see what he wants now!” yells back the driver. He rolls down the window and says, “What now?” “Do you have a light?” the old man quietly asks. The passenger throws a lighter out the window at him, rolls up the window and yells, “STEP ON IT!”
They are now going about 100 miles an hour and still guzzling beer, trying to forget what they had just seen and heard. All of a sudden there is more knocking! “OH NO! HE’S BACK!” He opens the window and screams out, “WHAT DO YOU WANT NOW?” in stark fear. The old man replies, “Just wanted to know if you want some help getting out of the mud?”

In these kind of conditions (obviously the beer wasn’t a good move), you need a steady hand and a secure sense of direction in order to keep on track despite the changing landscape. This is where a faith really helps. I’ve recently read “How to be a bad Christian” by Dave Tomlinson (thanks John for the recommendation) and one strong theme that came through to me was that the Bible and faith are there not as instruction manuals that tell you what to do in every circumstance, but rather as a source of wisdom that informs and inspires your actions. As former bishop has written:

“God gave us the Bible to stimulate our thinking, not to stop us from thinking. To read the Bible as a moral GPS guide is to cease doing the hard work of research, studying, thinking and figuring out our own way and our moral choices.”

So at times when we may think we are not making the progress that we want to or would hope to, remember that faith is not the same as having certainty, indeed as we gain in faith it often opens up even more questions and even a firm belief that we are heavenward bound tells us little about the route, the directions or the timings. All we can be sure of is that with Christian faith, we will never be left alone as we journey:

 

Moving on……..

It’s been a little while since my last entry – which is a good thing as it shows how busy I’ve been!

After a couple of teething problems, we’ve got quite competent at using the new wheelchair and car combination. Some nice things have been a trip to the forest bakehouse, a visit to see Johnny English 2 at the cinema and evensong at the cathedral – a well-polished visiting choir – and a visit to the Lady Chapel to see the spectacular “Poppy Fall” in a magnificent setting. So much worthwhile on our own doorstep!

And onto Music Therapy

This has been a major help to me and I would recommend it to anyone. Our approach is very individual and focuses on using my musical experience to generate compositions which enable me to express my emotions and develop my ideas intellectually. I have an extremely able and interested musician (and medic (!)) as my therapist who has inspired me to really push on with my composing – it’s not just the innate fear I have of deadlines and homework (!!) – but it has really helped me to know that someone else will look in detail at what I’ve written. So far I have completed in 2 weeks an Elegy for Oboe, a short Christian chorus (“Lord of all, I come to you to pray”), two piano pieces in outline including a fully-romantic Rhapsody in G minor, as well as three carols: “Adam lay ybounden” for unaccompanied voices and two contrasting, but highly tuneful 2-part carols for upper voices: “In Excelsis Gloria” and “Sleep Little Jesus”. I’ve tried writing in several different styles to try to develop my own voice and seem to be making good progress – just wish I’d started years ago……!

In addition, we’ve simply talked about music and we’ve shared pieces as well as me playing some videos of myself playing solo or in a piano trio with my family – great memories! Also spent some time using music for relaxation and breathing exercises so that as my condition develops, I will have some strategies to cope. Well done once more to Sue Ryder for introducing this great new option as part of your ongoing support – inspiring and practical!

 

 

What’s the use of worrying?

After the long build up, my powered wheelchair arrived last week – a real beauty!! This has led to me having a huge amount of independence returned at once; and it also means my wife has more freedom too. Now I can decide where I go indoors and precisely when; even deciding when I need the loo rather than having to be taken by my wife or opening the front door, but most importantly discovering where all the chocolate is kept in the kitchen!! The rise facility allows me access to higher shelves and the tilt-in-space lets me recline to sleep anywhere! Thank you to the NHS for this marvel! Forget the £350 million per week (to be saved by Brexit)! My wheelchair accessible vehicle arrives today, which means we will be able to go outside again and even venture to cafes, shops and restaurants as well as scenic situations such as Westonbirt Arboretum – which is amazing in the Autumn.

 

“People get so in the habit of worry that if you save them from drowning and put them on a bank to dry in the sun with hot chocolate and muffins they wonder whether they are catching a cold.”

On the other hand, it has not all been easy, BUT I have learned a simple lesson about WORRY. In order to get into the new wheelchair, we were unable to continue with the transfer board, but had to move to using the hoist, something we both wanted to avoid – maybe one mechanism too far, or simply an acceptance that my strength was decreasing. HOWEVER, once we accepted this, there were so many positives that showed what a waste of time the worry had been. The new method taught to us expertly by our brilliant OT – and once you get used to the feeling of being bundled in a horse blanket – takes away all the dangers and worries that transferring had produced without me really realising. It is comfortable, funny at times, much less strain and effort than transfer and massively safer. One of those things that you look back and think “Why on earth were we so worried about accepting it?” – a reminder to me of how earlier on I didn’t want to accept a stick or a bath board when they actually made things much easier.

Another joy…

Another tremendous source of joy has been the visit of Nuala and Enda who travelled down from Edinburgh in Enda’s half term to meet me.  They brought with them a bag of Scottish food and that gentle Irish humour ….and heaps of kindness.  Thank you

Coming in the next episode…….

Another highlight for me has been the starting of some genuine music therapy, so at last I will develop an understanding of what it is and how it helps me – more to follow on this in the future and maybe about how my composition develops through this. Once again, sincere gratitude to Sue Ryder for the vision and provision of this.
Just remember: