Monday, February 1st 2010

My care package moves to block hours

Well I’ve managed to get through the first month of the year just about on my feet. Back at the beginning of January I wasn’t sure that was going to be possible the way my legs were acting up. The last few weeks have been a very worrying time for me as walking to and from the bedroom, bathroom, and study is about my limit and I seem to have taken up permanent residence on the upper floor of my house. Hoisting equipment has been moved into the house in readiness and at times I feel very conscious of a clock ticking above my head counting down towards a time when I can no longer stand. Frightening!

In direct response to my changing needs my care package was reviewed a few weeks ago and as I previously mentioned the decision was taken to move from four short calls a day to two blocks of extended hours. That new care plan started this morning with Vanessa working the first block which commenced at 8 AM and ran all the way through until 1:30 PM. I was then left alone for a while until the second block commenced at 4 PM with Jan, a pleasant new lady who I was first introduced to last week. She worked the first 2 1/2 hours and the remainder of the evening from 6:30 PM through until 10 PM was picked up by Debbie.

Having these extended hours has already brought a number of advantages. For instance I can start my day earlier and not waste so much time in bed. This is important to me because time is so precious and I want more time to do the things I want or need to do. It also means that I no longer have to cram in eating a lot in a short period of time. With my dwindling appetite it is becoming ever more difficult to eat normal portion sizes. However with the additional time I have been able to alter my eating strategy to ‘little but often’. And with more time to prepare food I have more options at lunchtime so today for instance I had a delicious hot jacket potato with lashings of butter and grated cheese. Yummy! Another advantage is being able to have hot drinks pretty much whenever I fancy. I found it continually frustrating throughout the winter that I would often crave a hot drink but there was nobody here to make me one. Now I can eat or drink when I actually feel hungry as opposed to eating to a schedule.

Jan is the latest addition to my team of carers and will start supporting me from this evening initially for a couple of sessions during weekdays. Now that the care package has grown from 5.5 hours/day (38.5 hours/week) to 11.5 hours/day (80.5 hours/week) I need to grow my team of carers to ensure that I have stability as well as people with the right range of skills for my ever increasing needs. I cannot afford to have a repeat of the ups and downs that seemed to have plagued me for months last year. Jan comes across as a very cheerful, fun loving person with a great sense of humour so I think we’re going to get on just fine. This evening for instance I initiated her into the fine old tradition of dunking a biscuit, passing on such useful hints and tips as depth of submersion and dwell time, before moving on to such important considerations as diameter of the biscuit vs. diameter of the mug, and consistency of biscuit! smile_regular Well these things are important. If you get it wrong and things fall apart then you’ll end up doing what Jan had to do i.e. commence salvaging operations! smile_regular

With somebody here most of the day I was able to start trialling my new MND Oxford collar. Previously when I was trialling other designs I would have to put up with any discomfort for hours because there was nobody around to take the thing off if I didn’t like it.

So there we are, my first day of almost constant care from the moment I get up in the morning to the moment I am put to bed. I’d been resisting such a high level of care for some time now as I didn’t want to feel that the care was taking over my life but more recently with everything that is going on inside me I have become far more amenable to the idea. In fact I found it quite reassuring to know that help was so close at hand if I needed it.

And finally… I received a confirmation e-mail from the secretary of my local MP to acknowledge receipt of my letter/e-mail and to say that my MP would be giving it her attention.


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2 Responses to Monday, February 1st 2010

  1. jane c says:

    Hi Mark,

    This sounds good – must admit I’ve been a little concerned at how your symptoms are obviously deteriorating as they do with this awful, relentless disease, so knowing you have longer care and the ability to do more of what you want to do when you want to do it must come as a bit of a relief. Glad that you have found it not as fearsome as you thought it might be. Establishing good relationships with the right people also helps greatly. Presumably just the nights to sort out now?


  2. Maria V. says:

    Hi Mark
    Sorry I haven’t been in touch for so long but it took me a while to get used to this new version of ‘spaces. I preferred the old version and didn’t really do much on here since the change, but I have recently discovered some new functions, that make it a lot more interesting to use this site again. Still learning to use it all….

    Your Blog sounds very encourageing and I am very pleased to read that you finally receive the care that was so desperately needed. Like you mentioned, just being able to have a hot drink can be a real challenge, something most of us take for granted.
    Your story is a real eye-opener and an inspiration to us all.

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