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……