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Virtual Dead Ends

June 22, 2014

Yesterday, carers across the country went on a virtual strike. I must admit, I didn’t really understand the rules of the strike. I’m sure I probably missed something but I did read lots of tweets and Facebook postings from carers describing how difficult their lives were. I understand where this is coming from but I’m not sure it does us, as carers, any favours.

I feel the narrative around carers is totally polarized. On the one hand, carers are talked about as “poor, unrecognised, exhausted, carrying a huge burden”. This is understandable but plays right into the system’s hands. Because the solution to that sort of narrative is a pat on the head and the offer of a pampering day. Prostrate with gratitude for being pampered, the carer then goes about their caring business for the rest of the 364 days of the year. Tied in with this theme, is the idea of the carer as a “hero”. Another dead end – being flattered doesn’t get us anywhere. Being compared to Achilles is the carer’s Achilles heel. I know this may piss a few people off but I don’t think carers help themselves at times. Many times, someone will come into one of the carers groups that I belong to, describe their life (usually seeing it as shite) and tentatively ask for advice. Along comes someone with a useful suggestion and it often leads to fury on the part of the original poster. What they really wanted was a pat on the back for their martyrdom and any suggestion that they could move out of the victim space was met with indignation.

At the other end of the polar spectrum is the carer as “warrior”. One success in sorting out some respite and you become a “warrior carer”. I feel this as unhelpful as the victim narrative. A facile label of a warrior can deflect attention away from genuine need. Puffing up the ego never works in the long run, partly because their is a trip wire between warrior and victim that is seldom noticeable until you’ve fallen arse over tip.

The social care world has lost its soul, so there is no point appealing to it. All of the language I’ve mentioned above is emotive and the system is well versed in how to deal with emotional stuff. It doesn’t even touch the sides. My call, is for the almost impossible. Despite carrying out a role that is drenched in emotion, we have to take the emotional element out of it, particularly when we are dealing with the State. Use your friends, the forums, your therapist (if you have one) to work through the emotional minefield of being a carer but park it before you go into a multi disciplinary meeting. Talk in practical, almost business like terms. Be an equal and resist all attempts to paint you as a victim, a hero or a warrior.

I’m going to put this to the test again in a few weeks. I’ve got a meeting where I’m going to request more respite. I know I’ve had a full on three weeks but I’m knackered (emotional word!). One respite night every two weeks is no longer doing it for me. Thirteen days on 4/5 hours sleep has me walking through the town centre, spotting a bench and thinking: “Oooh – that looks comfy. I might just have a nice sit down for a few minutes”. I suspect that I’m just getting used to being 55. I don’t think I’m ill – I just don’t have the Duracell energy that I had at 45.

But if I go into the meeting and say all that, I will not be heard. I’ll probably come away with a leaflet for a local carers group and be told to contact them for support. Not respite – just support. So, another approach is needed. One without the emotional charge. Watch this space……


From → Social Care

  1. The buzzword you need is ‘coproduction’. Parent carers are supported by the government via the dept for education to run local Forums and the emphasis is not on being a victim, or a campaigning warrior parent, but on working with services at a strategic level. Leave the emotional baggage at the door and go into the room as an equal – you’re not there as yourself (a ‘naked parent’) but to represent others and make sure their needs are at least considered before any decisions are made. Adult carers need the same investment by government to enable them to be heard. Perhaps they are but I just haven’t come across it?

  2. Weary Mother permalink

    Mark I agree with you here, mainly.

    We are expected to grovel and not grovelling can produce a range of reactions, mainly ‘who do you think you are? I remember when I was promoted to a role above my feelings of self worth, ”I am in awe of authority”, I confided to my senior, ‘He said ‘well stop it’. He was right, but not easy?

    On the other hand if one has suffered years and years of disrespects.and very bad things after bad things happened to a vulnerable loved one, one catches ‘learned helplessness’? Worse, one can feel that the bad person/authority, alone, can heal the hurt. How wrong can we be?

    The LA has messed up big time, again, and in addition has bolloxed the complaint process. No apology, or solution offered. The only offer… the draining drag to Ombudsman .. again. I asked for meeting with the Head of Adult Care with my son. I was (eventually) offered a half hour telephone slot by secretary. I (respectfully – am not cured yet) asked for a face to face. I eventually, secretary again, was offered half an hour at the end of a day some time off, at LA headquarters. I explained that my LD son can barely stand far less walk; the long journey to headquarters would involve a lengthy detour first to get my son, and LA offices in the middle of driving hell. I suggested we meet half way? Or at my son’s day centre. Fat chance.

    I have now achieved a telephone call with this LA officer, for while I am on holiday. Hand up any one who gets anything from holidaying LA person?

    When I ran my business, if a project was in trouble I would immediately drop everything to get to a customer, always at my own expense, to resolve the issues and save the project. LA officers seem to have difficulty getting out of a chair/meeting….and always appear to behave like the injured party. It is difficult to keep on behaving like a peer when treated like a serf.

  3. Sally permalink

    I totally agree with you.What we are talking about is entirely practical-services, lines of responsibility, payments.How many hours of what. Is there anything concrete offered. Is there a place to go duiring the day. What are you giving this group of people.
    All the assistance for Carers-soft soap/pampering days empathy, flattery, selves as unsung heroes, rests on the assumption that the care of these people is our job all the time. We can be flattered, empathised,copartnered into taking on vast amounts of unpaid work to replace actual services for our people.I don’t want a pedicure. I want my son to have a good safe interesting place to go during the day.

    What drives me mad is when I see other carers fall for it ! At a recent meeting there were a couple of fellow carers simpering at the main table with the CEO of the LA, so thrilled to be given a part, so proud to have their names on the report.
    So reluctant to insist on the hard questions being answered.

    I also hate the title of carer warrior. (“Its a full time job ha ha…you’re such a fighter Mrs X, ha ha..well done on managing to get payment for that!”) It shouldn’t be about our ability to take on the World. If our young people had another chronic condition-say, diabetes, we wouldn’t want the services they get to rest on our ability to pull off miracles of argument and perserverence. We’d just want the bloody services in place so they can make use of them and get on with their lives.

    I have often thought that the very best thing we can do sometimes is to refuse to care. Take ourselves out of the equation.If a school had parents willing to do 99% of all jobs including the teaching-they’d hire less teachers. The local authority would simply send the funds elsewhere.If a hospital had families willing to do 99% of all tasks from cleaning to blood taking-it would hire less clinicains.The money would go elsewhere.

    Mark, at the meeting I bet you will be asked and asked WHY you want the extra respite, in an attempt to get you to describe your (entirely understandable) state of exhaustion, preferably in emotional terms.. They will try to shift it onto Mr Neary not coping, as if what is needed is for you to boost your coping abilities.
    But its difficult. If I ask for respite (I have never been given it) in straightforward, clinical, practical terms, I am refused it. I am clearly coping fine. If I rush in emoting all over the place about how dreadful it all is-its about my terrible coping. Perhaps counselling, a parenting class, a pampering day, a suppport group?
    Good luck.

  4. Hi mark,
    Not connected to this post but I wanted to let you know that I went on some training this week- called ‘think differently’. The trainer spoke about you and Stephen in the afternoon and read a post from the blog (which I know I read when it was published but I can’t seem to find right now) about the language used in the social care world and how it dehumanises the people we work with and sets them apart from us to justify treating people in ways that we wouldn’t treat people we consider the same.
    It was brilliant training and really got everyone considering things in a new light. I feel excited about the change in direction, at least for Hampshire, where it feel likes we’re getting back to proper social work and actually listening to the people we work with about what they want, their priorities in life and what we can really do to make a positive difference. We even had carers joining in with the training for the day.
    It was a really positive day and I was so excited to see you both spoken about as I feel I’ve got to know you both over the course of the 8mths or so I’ve been following you. I thought you’d like to know. 🙂

  5. susyjane permalink

    I agree with you Mark…. carers are not helped by being given labels, what would help is real tangible support to enable those we care for to live their life on an equal footing with the rest of society and to enable carers to do what they do without becoming exhausted themselves in the process, and without having to fight for every last drop from social care. Just a comment on the training spoken of by ‘sewcialwarrior’ – it does sound fantastic but I do take offence at the sentence.’ We even had carers joining in…’ it sounds like carers are being considered as second -class citizens, it may not have been the case but that is how I read it.

    • Sally permalink

      I agree. Its clear these are very nice people with good intentions. However,I am tempted to say, never mind about the carers. Ignore the carers, if you will. Assume its all up to you as a paid service to provide for these people-day centres, activites, sheltered employment. Yes, carers can speak for people who may find it hard or impossible to represent themselves.But when you are planning services, Ignore us.Its for you to do. I don’t want to be given a little position on a forum and a pretend role-with a title and everything. I don’t want to puff myself up and be flattered on a panel at which everybody else is a paid employee. I know that if I do it, you have every reason not to.It is a lie to say we are equal, respected important etc-if you look at the deal you have awarded us, of lifelong unpaid desperate care without services, without respite without day centres-we aren’t.
      So pretend we aren’t there.
      And now, given we aren’t there,approach the practical problem of the services you provide for this group of people.Do they leave gaps? Gosh, yes. How do you suggest disabled people will run a payroll etc for PAs now you’ve closed the day centres? Where exactly do you suggets they go during the day? And so on.Imagine we aren’t there.Now, what will you do for this group?

      • Liz. permalink

        Well that isn’t going to happen is it? The last large scale Needs Assessment we had went on for months while we danced around the issue of which needs were unmet – i.e., how many of them I would still cover.

        I would say – start from the carer, and LISTEN. We know what will help, what will work and make a difference, and aren’t usually asking for the moon. LAs are trying to avoid expense – and need a very expensive army to do it! It isn’t all that difficult to run a payroll if you don’t have to do it with the “experts” breathing down your neck. How much did it cost to make Mark and Steven’s lives a nightmare? We end up exhausted by being embroiled in systems that are far too complex and don’t always work that well. To put it mildly.

  6. I agree with Sally. Carers are now portrayed as the unsung heroes because, through the financial cuts their work load and responsibilities keep increasing. Services are closing, leaving people without support and dependent on families. Personal budgets have been handy in smuggling these cuts as a move to a brand new world. There is a big shift from the idea that the state is responsible for resourcing the extra support needs of disabled people to the acceptance that this is the duty of families.

    Let’s not be complicit in our own downfall and add insult to injury by accepting token invitations to forums where crumbs are given and carers just confirm that this is the way things are. They even have a right to a carers needs assessment!

    The need is not the carer’s need – the need is about the person who has impairments having a full life, activities and enough support. They need the whole society to do this, not just the immediate family. And they should have it of right, not through charity or privilege.

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