Friday, July 30th 2010


I’m into my last few days here at St Michael’s Hospice and preparations for my departure have been taking place throughout this week. The stairlift has been permanently removed from my house so that it will be easier for an ambulance crew to get me back upstairs (and out of the house if my health declines sharply). It will also be easier to take bulky equipment upstairs. Yes, after only about four months of use the stairlift has been decommissioned! It was something that was always seen as a temporary measure until the extension was built but even I was surprised that I got so little use out of it. This is a shining example of how disease progression can soon make things obsolete.

Yesterday my shower/commode chair and soft form mattress were removed from my room here at the hospice and taken home. I really wish I was allowed to have one of the alternating pressure mattresses I have been sleeping on for the past few weeks. It really is a notch or two above what I sleep on at home and I have been able to get some very deep sleep with no pressure sore problems because of it, but unfortunately they are very expensive and not available in the community.

The folks from equipment services also paid a visit to my house yesterday and removed all the redundant equipment that I will no longer have a need for, such as the bath lift, toilet seat riser, glide about chair and perching stool. So now we have some space we can start filling it up with new equipment!

This morning Chris (my OT with the PCT) dropped by to trial a new sling that will be used at home to hoist me when doing all my transfers. The difference compared to the ones I have been using here at the hospice is that it uses loops of material to attach to the hoist instead of plastic clips. It was also another chance to check out the techniques that will be used when dressing me on the bed. Everyone has sort of come to the conclusion that the best way to go about it is to roll me slowly from one side to the other. Only problem is that it can be very uncomfortable for me with the weight of my body pressing down on the shoulder joints and shoulder blades. We’ve been experimenting with taking Paracetamol ahead of the actual moving and handling but so far I’ve not found it to be that effective.

Richard (from Remap) called in this morning to show us what he had been working on so far as a means for me to be able to take a drink without assistance whilst sitting in my wheelchair. He came armed with a small toolbox, a portable vice and a junior hacksaw, proceeded to cut some tube to length, made some marks on others, took some final measurements, and went away again saying that he would contact me next week when it was finished!

I had to say goodbye to my new wheelchair early this afternoon as that to was being taken to my home ahead of me. So in its place I’m back to the oversized blue reclining armchair which starts to get uncomfortable on my shoulders and bottom after a few hours. Also being big and cumbersome and heavy to push means that I am now limited to staying inside my bedroom or conservatory, which is probably no bad thing at the moment as it has been raining here this evening.

The laptop computer that AbilityNet kindly loaned me whilst mine was being repaired was collected by the Courier and sent back this afternoon so fingers crossed that my one behaves itself. Once I get home I really need to start looking at getting a second computer because I literally cannot afford to be without one.

But the hardest thing this week has been saying goodbye to all my newfound friends as they gradually go off shift or go on holiday.

So now it’s just a waiting game. I’m sure the next couple of days will just fly by and before you know it I’ll be back home.


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