Sunday, June 26th 2011

Life at the hospice

It’s been a couple of weeks since I last gave you an update on how things are progressing here at the hospice so I thought I would spend the afternoon bringing you up to date.

My health continues to decline and for a while at least threw a new surprise at me in the form of heart palpitations which persisted for four nights. Not recalling ever experiencing this it was rather frightening waking up in the early hours of the morning to find my chest pounding away and not even in a smooth rhythm but rather erratic. The cure was found when we removed all the tablets I was taking in the evenings. Phew! The last thing I need on top of everything else is a dodgy ticker! As for the tablets, well I can live without them as they are not critical. In fact I’ve just decided to stop taking Riluzole altogether after being on it since 2007 as I now feel that any benefit it could have given me is now behind me. In fact everything that I have read about it suggests that at most it will give you another 2 to 3 months of extra life. That’s one less thing to worry about.

I’m still experiencing problems breathing particularly when sitting upright and I’ve already had a couple of minor frights when it felt like my breathing had rapidly declined and I was starting to struggle for breath. For this reason I have become very wary about going anywhere in the wheelchair for fear of running out of breath. Consequently most of the past couple of weeks have been spent in bed although not always in my room. On a couple of occasions the staff wheeled my bed into the conservatory so I could enjoy a change of view.

I’m really grateful that I’m allowed to use my computer at the hospice. Without it I have no idea what I would do all day other than get bored. Oh and thank you Jason and Chery for those lovely earphones you bought me last year. They are really coming into their own lately as they enable me to listen to music whilst working away without speakers interrupting the microphone. Having a good selection of electronic books and magazines has also kept my mind entertained and engaged.

Working busily in the background the folks at the hospice and my care agency have been busy arranging extended care for me for when I go home. Yes after a long battle to maintain some independence I am moving to 24 hour care in my own home. I’m sure my family will be relieved to hear this! Truthfully so am I now that the disease has reached the state it has. So this will be my last weekend at the hospice. I am due to leave on Tuesday although this has not yet been confirmed.

I’ll leave you with a few pictures that Suja kindly took of me working on my computer recently.

In bed at St Michaels Hospice. 17th of June 2011In bed at St Michaels Hospice. 17th of June 2011


In bed at St Michaels Hospice. 17th of June 2011

In bed at St Michaels Hospice. 17th of June 2011


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Sunday, June 12th 2011

Settling back in

Today has been my 11th full day back at the hospice. I’m pleased to say that some of the apprehension I was feeling when I first arrived has slowly dissipated. My breathing is still a big concern to me of course especially as I am reminded of it every single day. However it doesn’t preoccupy my thoughts to the same degree that it did a week ago. The memory of that frightful suffocating experience is fading away thankfully. Good job our minds have a built-in defence mechanism otherwise we would be forever tortured by harrowing experiences from our past.

I have been able to take advantage of the hospice’s wet room on several occasions so I can enjoy an exhilarating shower. How often I do it depends on what I wake up like. My positioning is still playing a key part in how easily I can breathe. The more upright I become the harder it is. I’m guessing this has something to do with all my weight bearing down on my diaphragm which is just about the only muscle keeping me breathing, a somewhat chilling thought. I did have a bit of a fright today in fact when I was left sitting upright for a few minutes too many and began to struggle to breathe. So it’s certainly seems like I have turned another corner and I am now resigned to the fact that I will spend a greater degree of my time in a semi-reclined position.

I’ve been trying some tablets lately to help me get some rest at night. Getting to sleep lately has been rather difficult so the doctor prescribed something which might help. Trouble is I now have the opposite problem because in the mornings I have a devil of a job waking up!

I had a meeting early in the week to discuss what happens next and would I like to go home? Good question. If I was literally at death’s door I would probably ask to stay here and spend my final days in the company of some wonderful people. However MND is a very unpredictable disease as I know full well from my own experiences. It’s true that my breathing is very weak but this situation could stabilise again and go on in a similar fashion for a few months if not longer. Therefore it is my intention to go home again. However before I can do that we need a mechanism in place so that if I should suffer another breathing episode there will be equipment and trained staff on hand to deal with it. And because of recent events it will mean a transition to 24/7 care for me. That of course equates to money and finding the right resources.

I’ve brought my Possum Primo environmental control system to the hospice as we discovered that it is capable of operating my wall mounted TV system. Now I can lay in bed at night and watch and control TV myself. Neat! It’s like a little bit of home from home.

The rest of the week has been a rather pleasant one. I’ve had three complimentary therapy sessions in which my shoulders, hands, and feet were subjected to a very enjoyable massage with sandalwood and Mandarin oil. I’ve had visits from my aunt and uncle as well as an old friend from work. Thanks Ted, your infectious laughter soon brought a smile to my face. Great seeing you again. The upbeat nature of the week has left me feeling a lot better in myself and more positive to. I’ve even been able to eat a little bit more than I have been lately. Clearly then feeling good is all about surrounding yourself with positive experiences and good people. It may not stave off the inevitable but it sure does make the time available that much more enjoyable.

With my friend Ted at St Michaels Hospice. 11th of June 2011. Photo courtesy of Suja


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Saturday, June 4th 2011

Return to St Michaels

On Tuesday this week I was transferred to St Michael’s Hospice where I have been ever since. I think the intention is to see what can be done to manage my breathing difficulties, possibly try BiPAP again, and sort out what to do about my care package, none of which had been discussed with me yet.

Unlike the constant hustle and bustle of a busy hospital there is a calming influence here at the hospice which I find much more restful. I’ve been able to get into the newly refurbished garden and Labyrinth on several occasions and just being able to get some fresh air and sunshine has made a world of difference. I’ve also got access to my computer again so have something to occupy my mind. My breathing is still giving me a lot of concerns though. I am not sleeping very well and in fact I’ve had several nights where I’ve not got any sleep at all so I’m feeling quite exhausted. Also my breathing is now starting to be dictated by the position I am in. It is for instance becoming harder to breathe normally when sat in an upright position and it is already causing problems when I use my shower chair during the mornings for my personal care. Also I am now having to use the wheelchair reclined back further and I am spending more time lying on the bed catching my breath. In fact this is now where I am using the computer – lying back in bed. But dictating into my microphone is leaving me exhausted so I am steadily reducing the hours I can use it. In addition to all this I am now starting to take anti-sickness pills several times a day to combat the queasiness I feel around mealtimes. After last week’s breathing episode I feel I have turned another corner with this disease and I now face learning to live with reduced abilities once again.


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Friday, October 29th 2010

A little luxury

I had a real treat this morning. For the first time since arriving I was able to take advantage of the hospice’s new wet room. In fact I believe I’m right in saying that I am the first person to use it. This was something that I had hoped would be available to me when I arrived, but unfortunately the room (which previously held the extra long Jacuzzi bath which I so enjoyed on my last visit) was still being renovated. So sadly I’ve had to continue to make do with bed baths in the same way that I do at home, until today…

It’s such a simple thing and yet for months now it has been out of my reach: this wonderful feeling of being drenched in hot water pouring out of a shower head under pressure, of feeling the dozens of separate water streams impacting the skin, revitalising it. Bliss! After a couple of months of lying on the bed and being wiped with wet flannels this was luxury! Not as nice as lying in a hot foam bath with a Jacuzzi running full tilt, but still very nice especially compared to what I’ve been having lately. I think I could have quite easily sat under that shower head until lunchtime!


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Sunday, October 17th 2010

A stress free relaxing morning

We’ve had gorgeous weather here at the hospice today and I’ve tried to make the most of it by spending as much time as possible outside soaking up the rays of the sun… and topping up my suntan smile_regular! Actually with me it’s more likely to be red, peel, white!

It’s been a bit stressful lately with all the ups and downs of trying to find suitable care arrangements. At the beginning of the week I was introduced to a potential live-in carer but my gut instinct was that this particular person would not be someone I could tolerate living in my home. It’s not that I can’t have someone living with me; it’s more a case of it needing to be the right kind of person. Like a lot of people I guess I’m careful in those I choose to have around me and over the course of the past two years of professional care I’ve got pretty good at quickly sizing people up in terms of competency, initiative, personality etc. Unfortunately however I don’t really have the luxury of vetting people for suitability and my time here at the hospice is limited. In fact I’ve already been told that if a suitable live-in carer cannot be found then the only option I will have is to be moved to a care home. So at the moment I really am caught between the devil and the deep blue sea. I feel incredibly frustrated that the level of disability I have and the vagaries of the care sector have put me in a position where I have so few options. In the case of Monday’s visitor I was informed the following day that she had declined to become my live-in carer anyway. I guess we both could see that it wasn’t going to work so that ended that. Even if she had accepted she would only have been available for about six weeks before I would be back to square one again. Hopefully next week will bring some better news than I’ve had this week.

So back to today and a morning spent with the deliberate intention of not trying to dwell on anything and instead just leaving my mind open to the sights and sounds around me and seeing where it takes me. I think that’s one of the things about motor neurone disease that I’ve discovered; that as the body paralyses the mind has a tendency to overcompensate and make up for physical inadequacies by constantly running flat-out. I have found that this year more than ever I am developing a heightened sense of awareness of things going on around me… or is that just my photographer’s eye and poet’s heart still seeing the beauty in things around me?

It’s been a very peaceful and quiet morning and although the squirrels and birds are nowhere to be seen now that the garden is being renovated, there is still plenty of insect activity if you look close enough. There were wasps buzzing around, some too close to my face for comfort, and even tortoiseshell butterflies crawling around the flower heads. At one point I caught sight of a long thread of spider silk drifting lazily through the air and glistening silver in the morning light before catching on a railing. Overhead was a beautiful clear blue sky with the sun bathing us in light and heat and casting intricate shadows on the stonework around us. In the distance could be heard the drone of a single prop light aircraft whilst high above passenger jets left their signatures trailing behind them, their contrails looking like someone had scratched the sky with their fingernails.

As the morning wore on the first few fluffy clouds started to appear in an otherwise barren sky. The first one resembling a piece of candy floss speared on a needle as it intersected a long silver contrail. It was almost like somebody had opened a large box behind the hospice releasing the clouds and letting them fly up into the morning sky like a child blowing soap bubbles. As the clouds began to accumulate I just sat there marvelling at their intricate shapes and dreaming of what it would be like to be as free as a bird flying amongst them on a day like today. I so miss my mobility!


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Thursday, October 14th 2010

A cold October’s morning

Apart from Monday when it almost felt like a summer’s day with the sun beating down from a clear blue sky, it’s been on the rather chilly side this week. The leaves on the trees I can see from my bedroom window are changing to a gold/rust colour and slowly falling to the ground like snowflakes carpeting the pavements and producing a lovely crackling sound when walked upon. But despite the weather I’ve still been determined to get out into the fresh air for at least an hour each morning even though it now means having jackets and blankets thrown across the wheelchair. Being trapped inside my home for most of this year has given me a greater appreciation of the outdoors than I probably would have otherwise, and now that I am on level ground the temptation to go outside is simply too hard to resist. As the hospice is located on the outskirts of town and right next door to a very busy hospital there aren’t actually that many places to go on foot, or in my case on wheels. Consequently most of the time I just sit outside overlooking the rather barren looking garden sipping coffee and chatting with my carers.

Today for a change Ann and I decided to visit the coffee shop in the main hospital on the opposite side of the road. So off we went all bundled up in our autumn clothes only to find that the Costa coffee shop just inside the main entrance had a long queue of people and very little room to move inside. So instead we burrowed deeper into the hospital until we arrived at their restaurant where we sat chatting over a hot drink and munching on hot sausage roll. One of the staff nurses from the hospice came over to join us and help Ann with the wheelchair on the return journey as the path was on a steep incline. Mind you, according to Ann it’s worse holding onto a heavy wheelchair going down an incline rather than pushing one uphill.

On our way back I couldn’t resist poking my head in the WH Smith newsagent near the main entrance. Up until about two years ago a visit to the newsagent to buy my monthly magazines such as PC Pro, Focus, Photography Monthly, and National Geographic, or simply to stand and browse, was a regular and pleasurable experience. Sadly I had to give up all attempts at reading magazines a long time ago when my arms became so paralysed that even the simple act of trying to lift one arm with the other whilst holding onto a page to turn it would leave me feeling exhausted. Since then I’ve had to fall back on websites but the reading experience is simply not the same with all the distracting animated adverts, pop-up windows and hyperlinks. I miss the simple pleasure of relaxing in a comfy chair, flipping through the pages of the latest copy of my favourite magazines, whilst dunking biscuits into a hot drink. Bliss!

This morning I tried to recapture some of that feeling by having Ann push me along the magazine aisle in the hope that I might catch a glimpse of some of my favourites. And there they were, hundreds of magazines on countless subjects neatly arranged on shelves. My excitement grew as we homed in on the subjects that have most appeal to me: photography, wildlife, travel, science, computing, digital art. On one of the lower shelves I caught a glimpse of the latest issue of the BBC Wildlife Magazine. Ann picked up a copy and placed it on my lap and proceeded to flip through the pages. I was overjoyed at seeing the double page spreads of the preview images for this year’s Wildlife Photographer of the Year competition. So overjoyed in fact that I bought a copy of the magazine even though I knew full well that I would never be able to read it without help.

When we arrived back at the hospice I had Ann position one of the over bed tables up against the front of my wheelchair, and with its tabletop angled to about 45° we were able to perch the magazine on top and I could sit back and relax whilst Ann kindly turned the pages for me. It was a lovely way to spend the remainder of the morning whilst waiting for lunch to be served.

This morning’s experience had been something of a painful reminder of just one of so many things that this awful disease has taken away from me. You would think I suppose that after all this time a person could get used to it but the sad fact is you never do. Sometimes something will happen that will kickstart old memories of things that were once physically possible. Today it was the simple act of having my carer reach out and pick up a magazine for me. The feelings of helplessness and the grief of losing an ability that I once took for granted almost caused me to have tears in my eyes. There are times when I truly hate this disease.


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World Hospice and Palliative Care Day

This post’s got quite a history. Originally intended to follow on immediately after my discharge at the start of August, the piece ‘in praise of my local hospice’ (as it was originally titled) was my attempt to put a few words together in recognition and thanks for all the wonderful care I received at St Michaels Hospice. It somehow seemed fated not to be written as recent events took over forcing it to be continually rescheduled. Then with my second admission to the hospice I decided that it would be the first post I would publish once I was discharged. However with World Hospice Day (October 9th 2010) upon us (something which I didn’t even know existed) it seemed the ideal opportunity to do something in recognition of all the wonderful things that St Michaels, and indeed hospices all over the world do to ease people’s suffering and to allow them to live out the remainder of their lives with as much dignity as possible. I’ve also taken this opportunity to upload a new gallery of photos that were taken during my first visit to the hospice but were never posted. You can find them here.

What comes into your mind when you think of hospices? Well if you’re anything like I was before all this happened, it would be something along the lines of ‘it is a place to go to spend the last few days or weeks of your life’: in other words once you go there you never leave. I must admit that I was a bit apprehensive about meeting them at first. Bear in mind that I had only been diagnosed a few months earlier. I was still working, still driving a car, and already my GP was telling me that my case was being discussed with the hospice and would I like to meet them? Why had I appeared on the hospice radar so soon? Were the doctors not telling me something? Did I have less time left than I thought? It was to be honest quite a shock to hear the ‘H’ word in conjunction with myself for the first time.

Lara, my palliative care doctor, soon re-educated me when she first introduced herself to me and described the range of services that St Michaels Hospice offered. I’d been given something of a standing offer to come along and visit their day care centre and to take advantage of such things as alternative therapies, but I had always shied away. I felt that I wasn’t quite ready to visit a hospice despite now having a greater understanding of their role in the community. And to be honest it probably would have stayed that way for even longer had it not been for the sudden change in my situation back at the end of June when my legs finally gave up all pretences at trying to support my body. Fortunately I’d already had a taste of hospice care through their relatively new hospice at home service when I was suffering terrible pain all night in my lower spine earlier in the year. Because of this it made the transition to full in-house care that much easier to accept and I’m very pleased to say that all my experiences of life inside a hospice have been incredibly positive.

In my time at St Michaels I’ve seen a level of professionalism, care and concern that is simply hard to match. In fact I would say that it is the gold standard in care, certainly in this area. The local care agencies would do well in learning from them and using them as a benchmark. Take recruitment for instance, without exception everyone I came across was a genuinely nice person who would go out of their way to help you as much as possible. Nothing seemed too much trouble. They were kind, courteous and very friendly. The hospice also has an ongoing training programme and clearly believes in investing in people – and it shows!

What also impresses me is the tremendous team spirit and the way everyone acts in a professional and yet friendly manner, all the while offering you maximum dignity especially when performing personal care. They are also very good at communicating their intentions ahead of actually implementing them. For instance whenever I’m hoisted the staff will describe each step of the process before proceeding. Contrast that with some of the agency workers I’ve had who spend more time chatting to each other than focusing on what they’re doing.

The atmosphere here at the hospice has a very calming effect. Nothing seems rushed and things take as long as they need. Don’t get me wrong, I’m sure that behind-the-scenes there is a great deal of work going on supporting the in-patients, but they never let it show.

But St Michaels isn’t just about having an in-patient unit although that is clearly the one I have had the most experience of. It also has an expanding hospice at home service as many people wish to be cared for in their own home environment for as long as possible. In addition there is a day care centre where patients living at home can come twice a week and participate in such things as arts and crafts (for instance there is a lovely conservatory that has been made into a woodwork workshop where people can build such things as birdhouses and miniature wheelbarrows) or just enjoy companionship and lively debate. Amongst the other services that the hospice offers is a full range of complementary therapies some of which I have sampled myself and found to be very stress relieving.

Running a hospice, particularly one that offers such a wide range of services to the local community doesn’t come cheap in this day and age and the sad fact is they get very little money from the government. Consequently fundraising is absolutely crucial in enabling the hospice to continue offering the high level of care that they do and events like the Big Wheel and Midnight Walk have become regular and popular local community events. Like all charities they are heavily dependent on volunteers, and St Michaels is fortunate to have between 600-700 volunteer staff who bring with them a wide diversity of skills and life experiences which enable them to fully support the hospice staff in a wide range of areas.

And so we come to World Hospice and Palliative Care Day which is to quote “a unified day of action to celebrate and support hospice and palliative care around the world”. You can find out all about it and this year’s theme of ‘sharing the care’ here. If you want to find out what’s being organised around the world today to raise awareness (and much needed funds) please click here. If you would like to make a donation to St Michaels Hospice please click here.

In closing I would just like to express my gratitude to all the wonderful people I’ve met, who take such good care of me and have made my stays here at St Michaels Hospice very peaceful and enjoyable. I’d give them all a medal if I could. I just wish we could take what they have at the hospice, scale it up and wrap it around the world. The world would be a much better place for it.

So please join with me in recognising and appreciating the work done by these hard-working and dedicated people on this, World Hospice and Palliative Care Day.


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