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A Carer’s Bank Holiday

April 21, 2014

I try to keep off Twitter and Facebook at Bank holiday weekends. Hanging around social media on a bank holiday activates slightly resentful feelings that I’m not proud of. I get a little sad of stories of trips to the coast, barbecues with old friends, long lay ins.

I know how unsettled Steven can become by all the changes that a bank holiday brings. So, I work overtime to limit the anxiety but overload myself in the process.

Today is a good example. On Mondays Steven comes to work with me at the Arts Centre. I go out at 8am to pick up the half time refreshments – a bottle of orange juice and a bake well tart. This is because, if the weather is nice, Steven likes to go into the garden at the Center and recreate the scene where Mr Bean is attacked by a wasp as he eats his cherry bake well. Once he’s settled at the Center, I nip down to the cash point as it’s the only time I get during the week to draw out the money from the personal budget for the cab fares. And then back to South lands for lunch. Today, the sandwich shop was closed, so we came back early and I gave up the 30 minutes I normally have free at this time to cook a bacon sandwich.

Sandwich eaten, we then had a gap where Phillip and Holly would normally be, so I suggested we start the Monday Mr Bean session early. A DVD of 5 back to back episodes and my input required to respond to Steven’s narrative of the episodes. That took us up to Countdown and again, I was needed to confirm that Rachael had just revealed five consonents and four vowels. Whilst Rachael was doing her stuff, I went round the living room with the duster and did a pile of ironing.

One last job – cook tea whilst Steven watched an Abba documentary. I can multitask and can sing Super Trooper whilst grilling a steak. I don’t mind doing any of these things and indeed, get a great deal of pleasure from the way Steven engages with these things. It just helps if I don’t know that my friend is on a pub crawl, watching the football.

The support worker arrived at 5pm to do the bath and for the first time since 5am,I got 15 minutes to myself.

The weekend is nearly over so it’s probably safe to turn the computer on. And roll on the May bank holiday in a couple of weeks.

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From → Social Care

4 Comments
  1. And they had the bloody cheek to question you were the best Dad Steven could ever have?! Your great Mark and don’t ever forget that. Tuesday’s are a great start to the week x

  2. Sally permalink

    Mark, I very much identify! I try very hard not to give in to just how resentful I can feel about the holiday experiences of families without a disabled person. I am coming to the end of a couple of weeks of pretty gentle, simple actiivites, carefully chosen- and I am exhausted. Why? Because my constant attention is required. In the brief periods in which my son’s attention is otherwise engaged, I must frantically try to get done the vital stuff-clothes in machine etc. I must be verbally present at all times and able to respond to all questions, supply punchlines and reassurance, repeat limits, ask what the crash was…

    A simple task such as buying dinner consumes a lot of anxious thought. The food staples-brought before the hols, start to run out.A letter from the LEA demanding hours of concentration, a written response and a call comes in-and I can only do this when my son is asleep, when I am also not at my best. A trip to the cash machine is damn near impossible-yet no cash for the vending machine/parking meter is a disaster. And so on. It works best to keep standing up and moving.

    Friends write to say how well the family camping trip in France is going as thier children are so busy with their own activities they scarcely see them all day and have a nice rest.

    Disabled services offered 2 afternoon activities maximum (written application required) for families this holiday.

    It is not good to go on social media and not at all good to read the suggested Easter activies supplements in the papers..

  3. marie permalink

    If it helps we did drive out to the coast. Its completely shit wherever you go when your parent is asking the same question over and over and continually commenting in a negative way on everything you do

    • Pauline Thomas permalink

      Life is so hard for people with caring responsibilities. For everyone of you who are doing this single handedly. I salute you. No way could I look after my son without the support of my husband.

      We long to be like other retired couples in their seventies who just do what they please. I am getting am sick and tired of listening to top of the pops cassettes all day and everyday. My son has not accessed day services since 2010. The only respite we have is his yearly trip to Lourdes with our local catholic fellowship. What a lovely lot they are. Not one social care professional amongst them, just a bunch of thoroughly nice people. Unfortunately this year he is too ill to go.

      Mark and Sally I know exactly how you feel and sometimes the resentment about how much life we are missing out on reduces me to tears. However these feelings pass, they always do, especially when the alternative is terrible care for my son.

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