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New Routines

December 6, 2014

It’s been two weeks since the furniture was delivered to my new flat and I was able to start working and “respiting” there. I’ve done two weeks of work there and four overnight stays and it is definitely going to take some getting used to. In the change of a calendar leaf, I suddenly have a very different life to the one I had in November.

I’ve been staying at the flat on Monday nights as that has been my regular respite night for the past couple of years. I arrive there about 2pm and return to Steven’s at 10am the following day to get on with the housework before he returns from swimming. I chose Wednesday night as my second night at the flat. It is my late night at work (finishing at 8pm) and I normally don’t get home until 8.45. Steven usually takes himself off to bed about 9.30, so we don’t have much to do with each other on Wednesdays, so that seemed a good day to chose for the second respite.

Wednesday this week was great. My last client cancelled, so I was free from 7pm. I phoned home to have an end of the day chat with Steven and then the rest of the evening was mine. I made some dinner and then had half an hour in the bath. I then took the duvet off my bed and snuggled up on the sofa to watch The Apprentice with a can of lager and a packet of Jaffa Cakes. This may sound rather mundane to some but I can’t begin to describe how different it is for me. Everything I do in the flat, I find myself asking the question – “Good grief, when were you last able to do that?” Half an hour in the bath, uninterrupted is unheard of at home. I can’t remember the last time I managed to watch an hour long TV programme all the way through without having to engage in a Mr Bean or Take That conversation at the same time. I didn’t have to multitask. It was pretty prefect.

The next morning, I woke up at 6.45am and rang Steven straightaway to go through his plans for Thursday. Once I’d done that. I felt at a loose end. At home, there is always something to be done or someone (Steven or a support worker) who wants a chat. I did the impossible – I went back to bed until 8.30. I then did the support worker’s wages online (again without interruption) before my first client arrived at 10am. And all this against the backdrop of the traffic up and down the river – the barges and the swans!

Yesterday afternoon I finished work and didn’t have to be home for three hours as Steven had gone to the Mencap Pool. Ignoring the voice in my head (Dad – I don’t like Mr Poirot – let’s watch Gladiators), I settled down to watch Hercules exercise his little grey cells in Evil Under The Sun. Today, I got to work and went round with the hoover and duster and changed the bed sheets before starting work.

I apologise if this sounds ridiculously self indulgent. But I can’t quite get used to how things have changed so quickly. I have more energy. I have more patience. I have more sleep. I keep noticing and being startled by how some things will never be the same again. The big things – yesterday I picked up the family Christmas cards and felt so sad to realise that for the first time in 33 and 20 years respectively, I wouldn’t be buying a “Wife” or “Mum” card. And the little things – I can leave a Cornetto in the freezer and return two days later and find it is still there.

The novelty will wear off. I will dust less. I won’t notice the ducks. I will have worked my way through my Lewis boxed sets. But for now, I can feel I can breathe in a way that I haven’t been able to for years.


From → Social Care

  1. I’m delighted to read this and wish you more ‘mundane’. With very best wishes to both you and Steven.

  2. Astrid permalink

    Fantastic for you😄😄😄 I totally get it! How lovely to read xxx

  3. I’m so pleased to hear that your flat is working out. I know you love Steven to bits, but it is great that you’re getting a couple of nights of decent sleep & relaxation each week. I’m a great believer in taking care of yourself first, so youre fit to support others.

    I’m sorry that you’re having to go through the first Christmas without your wife. As I said on twitter, you still could buy her a card if you want and it would be meaningful for Steven; maybe there’s a tree or special place where you could leave it?

    Whatever you do, take care. I’ll be thinking of you.

  4. Weary Mother permalink

    So true,
    when my son (born mid sixties) who has Down’s and other disabilities was 8 years old, a wonderful cub leader took him into his pack, and he went away from home for first time to a weekend cub ‘camp’, supported by scout extension volunteers.

    My husband and I took our other two children away to the seaside to a caravan lent to us.

    We had a two day window into ‘normality’. We were the ‘same’ as other families. We realised how much of us and our other children went into every day caring for and defending (such was the time) our much loved, visibly learning disabled son. Those two days were scary and yet so wonderful. So full of space and choice. We did so much and felt so scarily free to be with our other children in a way that we had accepted long ago, was not for families like us.

  5. Blooming brilliant. Things that others take for granted but actually will help you in SO many ways. Buy another box set……..

  6. Nichola permalink

    Lovely. Never underestimate the joys of solitude.

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