Monday, November 1st 2010


After a month spent at St Michaels Hospice whilst alternative care arrangements were being made I have finally been discharged and returned home this afternoon. I can say with tremendous relief that all the problems relating to why I ended up in the hospice so soon after my first visit have now been resolved. A few weeks ago I was being faced with a rather difficult choice; either accept a live-in carer or face going into a care home. Neither option appealed to me, and for a while I was feeling quite down about the whole situation. I felt I had been let down by the very people who were supposed to be looking after me and yet had failed to act in a proactive manner, thus landing me in this situation. Fortunately one of my carers, who had left the agency that were supporting me, had moved to an agency that were expanding into domiciliary care. This new agency offered to take on my care package and run it in pretty much the same fashion as it was prior to all the problems starting. I have to say that I was overjoyed at hearing this news, even more so when all the legalities had been finalised and we were given a green light, because up until this offer came along having a new day care package wasn’t even on the table. The icing on the cake is that several of my regular carers have also transitioned to the new care agency as they tell me that they still wish to care for me. It’s a rather humbling feeling to know that people are prepared to change employers just for my benefit. Thank goodness that people like Ann, Debbie and Vanessa realise the importance of continuity in a palliative care package.

So back to today and my last delicious cooked breakfast before venturing out with Vanessa for the last time before being trapped upstairs once more (hopefully for no more than a month). For a change we headed over to the Ark Conference Centre which is in the grounds of Basingstoke and North Hampshire hospital, itself only a stone’s throw from the hospice. Regular readers may recall that I attended and indeed participated in a special one-day MND conference at the Ark earlier this year. Today’s only purpose though was to sit and relax over a coffee in their restaurant whilst gazing out the large floor-to-ceiling window. On the way back we stopped off in one of the hospital’s courtyard gardens where I sat listening to the sound of running water trickling down a stone fountain into a pond. Heading back to the hospice I took one last glance at the beautiful autumn colours on the nearby trees, and wondered to myself when would be the next time I will be out in the fresh air?

Those lovely folk from the southern country ambulance service collected me from the hospice during the first half of the afternoon, and after a brief farewell I was on my way home. Fortunately because it is a privately owned company I was once again able to travel sitting in my wheelchair rather than on my back on a stretcher bed. Even so I have to say that because of the weakness in my body these days I really do feel every bump in the road and struggle hard to keep myself up right when going round corners.

I arrived home to find a freezing cold house. The boiler had been switched off, probably when the builders were laying copper pipes into the extension. However even after we got it fired up the living room remained freezing cold due to the large hole leading into the extension that had not been covered up. Consequently any heat soon escaped into the extension and its loft space. Things weren’t so bad for me upstairs as I was able to close the door to my study and bedrooms but the rest of the house wasn’t a particularly comfortable place to be for my carers.

We hit one other problem at bedtime. The battery on the Possum environmental control system had gone completely flat and was refusing to hold a charge. This is the system I normally transfer from my study into the bedroom at night and gives me a degree of security in the knowledge that I can use the hands-free phone in an emergency, or indeed alter the profile on the bed if I become uncomfortable. Normally the system runs on battery throughout the night and mains during the day. The way things are configured at the moment it’s not the easiest thing to get at the mains plugs in the study so it was with a bit of concern that I had to get through the night without this system.

So there we are. I’m back home and about to start the next chapter in my care saga. Fingers crossed that I have more luck this time fingerscrossed.

Before I go I would like to say a huge thank you to all the staff and volunteers at St Michaels Hospice who did such a wonderful job of caring for me. I can never praise these people high enough and I’m going to really miss them. I would also like to thank Vanessa for all the hard work she’s done today, Debbie for doing a lot of running around on my behalf this afternoon and generally making things ‘happen’, and Suja (who I am also pleased to say has chosen to remain involved in my care) for getting my computer setup and running this evening. Thanks girls!


Bookmark and Share

4 Responses to Monday, November 1st 2010

  1. Jane C says:

    Welcome home! Fingers crossed for a bit more stability with your care package and for a speedy conculsion to your extension.

    • barbara says:

      good news about the care package–you weathered that frightening situation beautifully. just another month and you shall be able to roll out into the garden for a proper visit with the critters and plants.
      hang on! that day will be here soon–and we will cheer for you.
      yay, mark !!!!

  2. Ted says:

    Hello me ol mucker, once again it looks like your adventure continues. I don’t know you having 2 homes now, and extending the current mansion lol. Hope things are not too traumatic for you with all the changes going on. Nice to hear your carers are looking after you. Anyway as always I am thinking about you. Don’t forget as best you can chin up, it’s nearly Christmas OMG. Look after yourself Maaaarrrrkkkkk. x

    • Thora says:

      Dear Mark have just discovered your website while researching motorneurone diseasewhich my son in law has been recently diagnosed with.
      My thanks and admiration to you for your remarkable effort in dealing with this most dreadful disease!
      May God bless you and bring you the peace you need.Your blog is an inspiration and joy to read.Well done,my friend! Will be thinking of you every day. Thora

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: