Monday, August 9th 2010

Settling back in

It’s been a week already since I left St Michael’s Hospice and returned home. On my last day there I was rather apprehensive about returning home as the situation I would find myself in was not that far from the one I had left, only more so. I would still be trapped upstairs for the foreseeable future, and because of my lack of mobility would now find life even more difficult as certain bodily needs could only be fulfilled when there were sufficient carers to hand. Also I would need to get used to having carers work in teams of two at certain times of the day – a further sign of care, despite being absolutely necessary, is steadily becoming ever more pervasive and time-consuming. I sometimes wonder how I ever manage to achieve anything these days as the amount of ‘me’ time decreases each time the care package increases. It is a constant frustration that I face: my mind is the same as it always was and just wants to get on and make the most of each day. Unfortunately, my body, much like an old machine needs a lot of maintenance these days. Time for a new one, I think. I wonder if The Body Shop would do a brain swap out? smile_regular

So how has it been this past week? To be honest a lot better than I imagined. Considering they’ve only had a week of handling me so far my carers have done rather well, and together we have already managed to identify and iron out a lot of the problems we first faced regarding hoisting and manual handling. Although they will already have had experience in these things, every client will have different physical needs and will thus need to be treated and handled differently. In my case the difficulty is in handling my upper body because of all the wasting that has occurred over the past 3 1/2 years. This means that extra special care is needed when rolling my body from one side to the other on the bed as I am dressed. For instance carers need to keep a constant lookout for what my arms, fingers and neck are doing so that they don’t become trapped or bent too far in one direction. We’ve managed to minimise the discomfort as much as possible but it can still be a painful experience. And despite the fact that I am merely lying there whilst others do all the work I still feel exhausted by the time it is all over.

I’m missing my baths already. Being submerged in hot soapy water was a lovely way to start the day and very soothing on my aching muscles. Having a bed bath just doesn’t compare although it does of course keep me clean. Having a hair wash now is an interesting experience as this too needs to be performed whilst I am in bed. Basically we’ve been given what looks like a scaled down inflatable children’s paddling pool with a drainage tube. Actually having my hair washed is now a two-person job and between them they need to support my head and neck, pour water from a jug over my hair, apply the shampoo, and keep an eye on the level of water in the drainage bucket by the side of the bed. Nevertheless despite all this palaver Alli and Debbie (who were the first to try out my mini paddling pool) managed the whole operation without a problem.

Inevitably as my care needs have escalated so too has the need for more people in the team. To be honest this is nothing new and I’ve been saying for months now that we need another carer who is flexible enough to fill in a few problematical areas we have so as to lighten the load on everyone else. We also need someone who can fill in when anyone else in the team is off for whatever reason. So since coming home we’ve added two new people: Linda, who will be assisting with many of the double ups, and Emma, the youngest person in my care team, who spent this evening shadowing Alli.

Because of the complexity of my care package now Debbie and I have been spending some time over the past weekend rewriting the care plan. It’s only when you write it all down and look at how many pages it takes up do you realise how involved it has become. But perhaps not everybody writes them to the level of detail that we have but I feel that it’s important to be very precise in how I wish to be cared for. Also I then don’t have to rely on my own memory to instruct new people. It must seem rather daunting to new people though.

Before I sign off today I would like to express my sincere gratitude to Richard, my very friendly contact with the Remap charity, who has once again saved the day for me (twice) this week. On my first full day back at home he turned up in the morning with a drink holder that he had fabricated and which could be attached to my wheelchair. This marvellous little device holds a standard sports bottle and the screw on top has been opened up to allow for a straw to be fitted. Now I am able to drink unassisted at any time of the day. The second thing that Richard has done for me this week is to produce a set of nicely shaped wooden extension blocks that have raised my desk off the ground by about 3 inches (7.5 cm). So now I can get my legs underneath the desk again which means I can get closer to the screen and actually see what I’m typing! Well done Richard, two small enhancements that have had a big impact!

Mark

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