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Gorging & Unpleasant Obligations

September 26, 2014

Every now and again, one of the big disability or carers organizations will issue a statement or report about the effects on carers of providing round the clock care. They talk about mental and physical exhaustion being the result and they often call for intervention to prevent a crisis developing. Usually, their solution to this problem is to call for an increase in “short breaks” and times for the carer to have some “pampering”. As an activity, these reports are pampering themselves. They don’t seem to bear any semblance to any carer’s reality.

I looked up the etymology of pampering. It comes from the dutch/German, meaning ” to cram with food or to gorge”. I’m not sure that a short break weekend could be considered gorging when the carer still has to care for the other 363 days and nights per year.

If we’re not being pampered, we may qualify for some respite. A friend of mine whose daughter has learning disabilities and several major health issues has just been “awarded” 10 nights respite a year. For the other 355 days and nights he gets at most, 4 hours broken sleep each night. The guy is on his knees.

In the OED, respite is defined as “a short period of rest or relief from something difficult or unpleasant”. Or, ” a short delay permitted before an unpleasant obligation is met or punishment is carried out”.

I don’t think sleep, or rest, or relief crops up in the European Convention of Human Rights. Perhaps it should. I might stay awake long enough to savour my pampering foot massage.

Three years ago, the judge in our case ordered a round table meeting between the Official Solicitor’s team, myself, the court appointed expert and several members of Hillingdon’s social care team. The point of the meeting was to discuss Steven’s care plan. After a long discussion, the official solicitor brought up the carers assessment and asked if there was any respite available for me (at the time, I wasn’t getting any). The reply from one of the senior managers was very funny but nonsensical – “No, only within the framework of the current envelope”. The OS asked him what he meant and the guy just repeated the same sentence. End of subject. Suddenly, the court expert started speaking up for me – ” But within the current envelope it is impossible for Mark to have a relationship. Its impossible for Mark to have a social life. I know Mark likes weight training – its impossible for Mark to embark on any structured consistent training programme”. And so he went on. Listing all the things, caring prevented me from doing. It was depressing but impressive at the same time.

This is what it is like. We need new words, new ideas. Let’s ditch pampering – its insulting. The idea of respite has become so tainted and manipulated. What we really need is for the normal things of life, sleep, relationships, to be acknowledged, respected and to be factored into care planning. It’s not a treat. Its being human.


From → Social Care

  1. meg permalink

    Hear hear!! Unfortunately budgets are being cut, allotted support hours are being cut at every opportunity. I recently requested a safe space respite for one of the learning disabled ladies I support. I hit a brick wall. I see more and more any new ‘initiatives’ not being funded to improve lives of learning disabled adults and those who care for them, whether family like yourself or paid support like me but being funded to create think tanks, training schemes, creation of target led tables. it is depressing how little is spent on what is really needed and how little notice is taken of those on the front line of learning disablities

  2. Insane, isn’t it? And getting more insane as the language to justify it gets more meaningless.

    I occasionally attend meetings for carers. At one, in a room of about 50 long-term carers, non of us had had carers’ assessments, and some had never heard of them.

    A more recent one was meant to be about community classes for adults. I thought these were being provided for our charges – but no, we were told (enthusiastically) that these were aimed at carers – basic skills classes, where we could improve out reading and writing. At least four of us had post-graduate degrees, but I suppose it was well meant!

    Yesterday, I read the CoP judgement on the Somerset case – the one very similar to yours. That linked to another CoP hearing, with a less favourable outcome. It contained this statement “The local authority confirmed that it was not prepared to offer a supported placement at home that would provide one to one support during the day.” No eyebrows raised – they didn’t want to, they weren’t going to. So there!

  3. This rings so true. I an not agree more.

  4. A very timely post, as just last night I was looking at our local carers website to see just what it was that they provided that might be applicable to me. Nothing from what I could see. Like Lizzie said, basic skills classes are not useful for those of us doing post graduate study. Perhaps they would like to supply me with a ‘babysitter’ for my 18 year old so I can spend a day in the university library!

    And why would I want pampering? Painting my toenails is so low on my agenda, that it isn’t even there. I have never done it before, why would I do it now?

    As for respite, in our county they like to frame it as ‘activities for the children’ that just happen to occupy them for long enough for the parents to have a break. But there has never been one activity that my son was interested in. He isn’t into football, drama, Z-list celebrities, or horse riding. When I had pointed this out several times, they finally managed to organise some STEM activities, but by them my son was too old, and it was for half term, every day. He suffers from fatigue and pain, so every day for a week and nothing for the rest of the year doesn’t solve the problem, it makes it worse for him.

    The other important point that you bring up Mark is relationships. People can’t understand why after 18 years I am still a single parent. I have toyed with the idea that maybe my GP surgery could run a match making service. After all they know about the psychosocial situations of their patients, and maybe if they could match some of us up, it might sort some of those problems out and their patients won’t have so many trips to the GP. 😉

  5. And, of course, it’s not all about us either! It is about the person with special needs learning to live independently of family carers whilst the family are still fit enough to help with this transition. As without this plan in place it would be too much for someone with an ASD to cope with should there have to be a sudden change. But the LA’s would rather deny the support until there is a crisis and then cope with the fallout by banging them up in ATU. Interestingly, Cambridgeshire County Council recently made four staff redundant at a cost of £418,000! They supported this by saying that it would save money in the long term, funny how they don’t see that kind of saving in preparing our young sons/daughters for the future!!

  6. Eun permalink

    The lack of respite doesn’t just affect families of those with learning disabilities though. It affects those of us caring for extremely severely physically disabled family members as well. Our son is 29 years old and has DMD. He uses a powered wheelchair, needs a ventilator to help him breathe and is awaiting word to go into hospital for heart surgery. I am also disabled myself yet we have been told if we do not provide my son’s care then the SW dept will place him into an old folk’s home! We get 16 hours a week to get him out of bed in the morning and two 1 hour showers and that is all. The childrens hospice are introducing a cut off age of 21 and my son and around another 100 families in Scotland are being kicked out with no alternative offered. We got 4 nights respite 4 times a year and now we will be losing even that. Basically our sons have lived too long – they weren’t expected to live beyond 18 but now they have and there are no services for them. Adult hospces only offer palliative care they do not offer respite so we will be stuck with hard and extremely intensive caring 365 days a year with no break.

    • Sally permalink

      Eun,I am so sorry about your situation.Given the constant level of care you have been providing, the cruel idea that your son will be in an old folk’s home unless you can support him-out of a high paid job? Which you popped off and did -when?
      A friend of mine once said that to achieve anything you have to have “elephant time”-big slabs of time.Carers get what she called “rabbit time”-little bits of time, not predictable,often interrupted or removed with no notice. Its paralysing.I have had years of attempts to start off work or study-hell, hobbies, ok, I’ll settle for buying a jumper-and then my son’s situation folds and all must be tossed aside.

      Mark you are so right-the terms “short breaks” and “pampering” are insulting. They trivialise what caring involves.Much of the difficulty with caring could be sorted with regular times off, assured sleep some nights of the week, day centres.With the right sort of help in place it would still be a hard job but we could cope, we could do things with our lives and the people we cared for would be happier-its no fun being looked after by an exhausted irritable person who looks like a zombie.
      It a care worker or nurse was expected to do the hours caring requires, there would be an outcry, strikes, industrial action. The first argument put forward would be that anybody that exhausted would be a worse carer and furthermore what was being asked was inhuman.
      I don’t want a carer’s day once a year to have my toenails done. (They always suggest that. Perhaps we all look a bit ungroomed.) I did however, once have it suggested-seriously-by a social worker who had come around to tell me that my son had not won a place in their Summer holiday activities for disabled kids.(Demand, you know.)
      I must say anybody who uses an inane mixed metaphor like “framework of the envelope” is dead to reason.What the Hell were you meant to do with that?

      • Pauline Thomas permalink

        I am in my seventieth year and my husband is two years older. My son is 42 and has been reluctant to take part in any services since 2010. He has been so traumatised by the closure of his day centre and the resulting shambolic way our LA delivered its changes under the White Paper Valuing People that he refuses to have anything remotely to do with our LA. He is so scared they will let him down again. It was easier then to let him remain at home than to go through the trauma of battling to get him ready in the mornings when he was making it so obvious that he did not want to go to the new services..

        It was not always like that. School days and college days and even the day centre was always eagerly attended. We at the time regarded this arrangement as ‘shared care’ in partnership with our LA. All gone now. Taken away by the theorists who believed he and people like him were being segregated from the community. The same people demonised the day centres and the carers who allowed their loved ones to go there. Accused them of wanting free respite. The same people saw a chance to persuade the policy makers that they were the people to provide these utopian changes to day services. The result of these blinkered views and the changes in day services they created has been, for the older parents and their loved ones, a life of worry and misery.

        If anything respite is more important now for carers than ever before because of the way LA’s have been whittling away at the care they provide for people with LD LA’s seem to believe if they throw a few sweeties at us in the form of funding to a carers organisation to provide an hours ‘pampering’ then we will go away tugging our forelock. LA CEO’s, Councillors, Social care managers and council officers must stop and try to imagine how they would function in their daily lives if they had no time for relaxation or starved of sleep or even be unable to read a newspaper all the way through or listen to the radio without interruption.
        How would they feel? Would they want someone to help them? Would they feel abandoned? Would they feel insulted that their quality of life has been so casually dismissed as irrelevent? Or would they do what they do now and thank the lord that it is not them and pick up the money and run?

  7. Weary Mother permalink

    All of that. And more. On top of this black comedy called ‘quality (viral?) care’… the challenge and complaints process.

    They grind us into ever smaller and smaller pieces, and they will kill us, after they have killed or damaged our sons and daughters beyond repair.

    Many vulnerable sons and daughters were led pied piper like into independent living, my son was encouraged into this by me. He will be 50 soon. He has Down’s and is multiply handicapped, now. Much of this increased disability caused by admitted neglect and exacerbated by the culture of his LA – a complain if you dare culture. Always ‘who do you think you are’ and we can run you into the ground’ style of leadership. Nil accountability masked by waffle on waffle, care speak. Familiar?

    My son’s current care and support and his day care place currently sits on a wafer, sliver thin, bought by years of my life, my health and any creativity I may once have had, all sliced and sliced ever thinner with every cut and every disrespect. I know most of the the ropes – been around the loop professionally and academically, yet it is/has been a more than full time job to hang on and or reinstate some safe, far less ‘quality care’. Then there is the LA commissioned care agency, whose carers can be very good (as at present), or more than blooming awful. All their mentoring done by me. …..and all other support done by me.

    I tried sleeping the night a nasty care manager removed his day care place and took yet another precious hour, (after an already blistering reduction of all his support to three hours for everything)… down to two because I had the cheek to challenge. And then manager said and smirked, when I asked how my son ( can manage money when he cannot, read without ability to read, see without full sight, walk without the ability, talk when no one can understand him, get to hospital far less know what do do once he gets there, etc etc… ”by himself like every one else”.

    I tried sleeping the night a locum day centre manager said that all the others ‘cleared out’ of the day centre would still be there if their parents had bothered challenging. These parents are in their seventies and eighties, and they too now have failing health and their middle aged and older, disabled sons and daughters ……………………at home all day…and night.

    My son lived with fear grief and huge losses while I (one more) challenged all the reductions and the lengthy outrageously shockingly bad agency support, till we were eventually heard through the law. We did it together. On some days it was all so daft and difficult we have laughed our tired and worried heads off. But always is the outrage and knowledge that this current ‘support’ is only temporary and will have to be fought for again and again..and I am old…and I lie awake.

    This is all so very, very wrong. I lost who I am/was years ago………I wanted to learn how to paint, understand (a bit) Japaneses comics (does anyone?) with my granddaughter, go kyaking (from the bank) with my grandson ……………………….still have a go,

    …………but too often I am just too weary…..

    • Pauline Thomas permalink

      I apologise Mark for hijacking your blog to reply to Weary Mother, but we share the same angst about the dire state of care offered to our sons. One point Weary Mother made about the locum day centre manager who said that the ‘day centre would be there if their parents had bothered challenging.’ rankled with me. Believe me we did challenge our LA. Our little band of concerned parents heckled them at meetings and voiced our outrage at the way our LA was slashing and burning the day services. I personally wrote a letter to every single one of our 65 councillors, explaining that their one size fits all policies were causing much distress to carers and service users. I had 4 replies, all from the opposing political side. I was considered a loose cannon by the puffed up men and women who sat in the council chambers.

      The sad outcome to all this was that the councillors and their lackeys, (otherwise known as social care officers), used most of the money given by government under the Valuing People scheme to finance expensive PR presentations, usually held in a posh hotel, often with food and drink supplied to persuade us how wonderful the new services will be and how service users with complex needs will be much much better off. In fact so much money was wasted on PR, and consultants that most of their bright ideas never saw light of day. No money left to implement them. The situation now is that the people with complex needs have got no voice and no choice, and are now stuffed into a converted dead shop (laughingly called a hub) or squashed into the last remaining day centre which often resembles Waterloo station on a Bank Holiday.

      • Pauline Thomas permalink

        And also ….

        What I have just said pales into insignificance when you see the brutal way some people with a learning disability are being torn from their families by their local authorities’ social services and placed far away from their home. No comparision really but both scenerios are bloody awful for the families involved.

  8. Spot again as usual Mark. I’m not going to rant about pampering sessions (grrrr!) but just to say that sleep deprivation is recognised and used as a form of torture. Guy slept for less than two hours a night when he was younger and never slept right through. We argued we were (and others still are) being tortured on a regular basis. I might be wrong but I’m sure there’s quite a bit in Human rights legislation about torture!

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