Friday, July 23rd 2010

Unwelcome suggestions

There was another case conference this morning in which various healthcare professionals from both inside and outside of the hospice gathered together to discuss outstanding actions necessary before I could be safely discharged. After they’d had their meeting I was called in to join them in the conservatory where they outlined their concerns over my going home and being trapped upstairs for a further 3 to 4 months. Because I have reached the next level of the disease with early symptoms of respiratory problems starting to surface, they were asking me if it would be better to spend the time living downstairs so that I could access the outside world. This sounds a great idea however there are a number of problems with it. Firstly I would have to clear most of the furniture out of the living and dining room and put it into storage. Next I would have to somehow re-populate this room with a bed, a gantry hoist, the commode/shower chair, my wheelchair and a desk to work at. The room would end up looking very cluttered. But even if I was prepared to accept all this it still wouldn’t work because of the noise and disruptions from the building work due to start next week. It would be impossible to operate my computer using voice recognition with all the background noise. I know that full well from my past experience. So it would effectively shut me down for a few months which I couldn’t tolerate. I just don’t see how I could live, sleep and work in a room that is having holes knocked in the walls with workmen moving about.

The second and more radical suggestion was that I cancel the extension altogether and just move in downstairs. So effectively it would mean living out the remainder of my days, however many that may be, in a single room and never going near a bathroom again! Why would they suggest this? I suspect it has something to do with the amount of life expectancy I have left and wanting to make the best of that time. Perhaps also there are people who feel that I just wouldn’t get the benefit of having an extension this late in the disease progression?

I was aware of course that everyone at the meeting had my best interests at heart and didn’t want to see me trapped in my own house, but I have spent well over a year trying to get an extension built. It’s caused me endless stress and worry, I’ve written to my MP at Westminster, got my local councillor involved, and called on the help of some of my healthcare professionals. In addition I’ve spent quite a large sum of my own money on a stairlift that was going to be deducted from my contribution to the Disabled Facilities Grant. On top of all this I had to sign to say that if I cancelled the project I would have to meet all the costs up to that point myself. There was never going to be a U-turn on my part regarding this decision. Come what may I intend to get this extension built if it’s the last thing I do (and probably will be smile_regular ).

On a more cheerful note I’ve been able to spend the second afternoon in a row in the company of my brother, Chris, who has driven down from Scotland to visit family. It’s also given me the opportunity to spend a little time with my niece and nephew, Emma and Rowan. It’s been a year since we last got together and although we keep in touch by phone it just doesn’t make up for seeing each other. So thanks for an enjoyable few hours, Chris. I wish we could see each other more often. Here’s a few photos from our get-togethers. More to follow shortly. Enjoy!

With my niece and nephew, Emma and Rowan, in the hospice garden

With my brother, Chris, in the hospice garden

With my niece and nephew, Emma and Rowan, in the hospice garden

With my brother, Chris, in the hospice garden

Mark

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One Response to Friday, July 23rd 2010

  1. jane c says:

    I sympathise with your frustration over getting the extension built, as is so often the problem with MND, the disease time progression far outstrips the solutions

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