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August 26, 2014

I booked a night away yesterday. Getting more than 5 hours sleep, once a week has become quite important to me.

On the way to the hotel I bumped into an old work colleague. We chatted about old times for a while and then I told her about my plan for the day. I was going to dump my bags in the room, go for a swim, watch an episode of Lewis, have a meal, long soak in the bath and then another episode of Lewis whilst lying in bed. Plus a promise to phone Steven at 4pm to talk about the Abba video he was planning to watch and another call at 8.30 to run through the agenda for Tuesday.

My friend listened to all this and said: “Oh, what a lovely pampering day. I’m so jealous”.

I’m not sure why but this statement pressed a button. I should have smiled and moved on. Instead, I found myself launching into:

” Hang on a minute. You can have more than 5 minutes in the bath any day you like. You can watch a TV programme all the way through any day you like. You can eat a meal before it goes cold any day you like. You can have 7 hours sleep every day if you like. This is not pampering – this is just joining the rest of the human race for one day every fortnight”.

It was unfair of me and she hurried on her way ( I did text her later to apologize). I guess it set off my shadow side of being a carer. Selflessness flips to resentment.

The care world is content to frame things that way though. All the big carers organizations talk about “pampering days” as a treat – a well earned reward for your sacrifice. So they push for pampering days once a year. Once a year! To have a massage, or go for a cream tea, or a horse riding afternoon. And when you have your carers assessment, the LA will do exactly the same thing. They can get out of their statutory duties if they dangle a trip to the beach in front of you.

My favorite part of a night away is the quiet. I don’t have to talk or listen for several hours and its lovely. Its good to be able to follow the plot of Lewis without interruption. And its good to have more than 5 minutes in the bath before I have to discuss the career of Prunella Scales. But its the silence that is the biggest treat.

From → Social Care

  1. I totally understand you – and if your work colleague reflects on what you said and has an incline of your life she will realise where your little ‘rant’ came from.

    Being a single parent with no extended family support is hard – add to that a child who has extra needs and its relentlessly hard – add to that a child who requires you to fight multiple battles on multiple, fronts so your mind is NEVER resting – you have a recipe for physical, mental and emotional burn out – a couple of hours quiet is PRECIOUS!

  2. The joys of quietness – much underappreciated.

  3. Weary Mother permalink

    There is never quiet in our head. Always dealing with the current, and anticipating the next minor to major crises; resolving the present and anticipating the next basic to serious health issue. Sorting out as diplomatically as possible the almost daily failure of the agency worker to turn up…or turning up late/going early. Knowing something is not quite right about a support worker, but not wanting to rock the boat in case we get worse, or we upset the agency and are seen as difficult. The creeping anticipation and panic anxiety as each day moves towards the feared meeting with the LA god of the day who will thumbs up or down in terms of support. The should I or should I not remind that an assessment is due, in case we get one of the nasty ones who will cut (did cut) support to the bone again. And our son or daughter is deteriorating with age as their learning disability mental and physical clock ticks…. and we don’t know who will die first.

    And there are all the lovely lovely days and times together where we rise above it all and enforce stillness on our busy head. For our deep relationship with and the knowing of our sons and daughters carries us on……………………….but pampering?
    Would take morphine some days to still our head?

    • I can actually get that “quiet”. each time I go away, the same pattern happens. For the 1st hour, I think about Steven would like the hotel (“Shall I get him to comer over for the pool” or “he’d love the breakfast tomorrow morning”). But once Ive phoned home, I am able to switch off. Yesterday, I lay in the bath for half an hour and swear that i didnt have a worrying thought in my mind. Same with Lewis – I watched the whole episode and got completely caught up in the plot.

      • Pauline Thomas permalink

        Mark you have it in a nutshell. People who have not had to care for someone so intensely have not the slightest notion of what it entails. Years ago a good friend of mine’s daughter broke her wrist. ‘Pauline’ she said ‘it is driving me mad having cut up her dinner and help her to get dressed’. She then realized I was doing that all the time for my son. ‘I am complaining to the wrong person, sorry’ There it is, even people who know us, take for granted that we have more miles to walk than them when it comes to living a normal life.

        It is so much more hurtful though to know that there are people out there who are earning a good living supposedly employed to make our lives liveable and yet have not got the capacity to listen to what we are asking for.

      • Weary Mother permalink

        Mark, thank you.
        And you are absolutely absolutely right. We all have our ways and our windows of peace. My grand daughters both did brilliantly in GCE’s. and how we celebrated, for example. It is a beautiful gold Autumn day here, I go into my garden and I relax and I am…almost at peace. I will see my sisters tomorrow and we will compete; this time about our clever grandchildren. It is our lovely life….and we live it. It just seems to become a bit harder than it was when we were younger?

        We can all have the very good days, good days and then there is the other kind…..?

  4. Jayne Knight permalink

    As you well know if you don’t look after yourself you won’t be able mentally or physically to care for anyone else. It’s hard to think like that sometimes but I find that when I do I am far better dealing with what is there to hit you and the mundane. So caring about number 1 is actually vital. You need more of that not less.

    • But the question to that statement Jayne is “how”? And “when”? The support hours are very strictly controlled, so there is no more time during the week to get a break like that. I get 1 1/2 hours on a Friday night but that is now spent doing the support workers wages and tax. I get 42 nights a year respite. I don’t have the staying power to go 13 nights on 4 hours sleep, so I top up the respite budget myself so I get 52 nights (once a week). I’d love more but there isn’t the support or money in the personal budget to allow for that.

  5. “All the big carers organizations talk about “pampering days” as a treat – a well earned reward for your sacrifice. So they push for pampering days once a year. Once a year!”

    That is all our local Carers group seems to push too. Makeover days, pedicures, aromatherapy taster courses… Hmmmm… I can just see Mark with a new hair style and makeup colour scheme!

    So, do anyone actually have useful things provided by their local carers organisations? I don’t even wear makeup, haven’t had my hair cut by choice for 30 years, and have little interest in the frivolous offerings of the local carers groups. What I really need like Mark is time to go and do my own thing.

    • Pauline Thomas permalink

      Exactly cyberjennifer what do carers organisations offer? I would dearly like them to stop propping up dwindling LA social care. They need to get behind carers who want what was promised but what failed to materialise, in the big lie called ‘Valuing People’ Most carers want good services for their loved ones. Most carers know that if they can get it right for their loved ones then they have got it right for them. Carers then can have the peace of mind knowing their loved ones were happy and then in turn they can enjoy their free time as they wish

  6. Sally permalink

    Mark, I so agree with you.”How?” is the question even though it can be presented as somehow in bad taste to ask it.
    In Australia there is a rude expression:”pissing in your pocket”. It means, less pithily, the giving of unworkable advice with the aim of making the giver look good.
    I maintain that “Look after yourself” or “make time for yourself” are deeply annoying statements however well intentioned especally when coming from professionals.Should you jump off a cliff, they can then say that you were advised to de stress. That there was no practical way for you to do this is beside the point.
    I would love to see many professionals in court when things have gone horribly wrong and made to say how exactly they had thought the person in question could “take time” for themselves under the circumstances.
    I was once told by a social worker I was begging for respite to “have a break sometimes..go and get your nails done” which I still treasure as the silliest piece of advice I have ever had.I was on very little sleep and every day was a nightmare of care tasks.and constant attention.Nobody wanted to care for my son in view of his behavior, I was not then entitled to any payments and to make a phone call even was terribly difficult.The idea of time off to just stare into space was like a vision of Heaven.
    I agree with everything Pauline has written.Forget pampering days-how about Carers organisations being loud and militant about the amount of work ,worry etc involved in caring and to shout that it is inhuman to exploit Carers’ love to make them live under such conditions by slashing services. I’d take that over a massage.

  7. meg permalink

    Good for you. I am not sure I would call what you describe ‘resentment’. More asserting yourself – being selfish once in a while is not selfish (in the negative way the word is often used). You are protecting yourself, looking after yourself. That isn’t selfish, it helps you but it also helps Steven – to have his dad around a few years longer than if you flogged yourself ‘selflessly’ into an early grave.
    Enjoy every moment. Both you and Steven deserve the benefits

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