The Unscripted Carer – 22nd October 2008
The past few weeks we seem to have touched new lows and periods of extreme self doubt. Fortunately we seem to be picking up a bit, but there is quite a lot of “we hope” about that.
A lot of things seem to be getting everybody down – including the depressing weather and the realisation that summer was “a Tuesday in May”. Nicola’s mobility issues took a turn for the worse, and the first set of injections didn’t seem to work – so she needed another set. So, for a month she was in even more pain than usual, and needed a lot of care during the day and night. The combination of Nicola’s pain killers and my lack of sleep seem to get us both down, and so we were looking forward to my agreed carer’s re-assessment addressing some of our issues.
Unfortunately the long standing appointment was not honoured by Social Services – without even the courtesy to tell us it had been abandoned, or when it would be re-arranged for. This proved to be the final straw for us, it made us realise just how much we had been pinning our hopes on “our lady” sorting things out for us. I consider that we are relatively “robust” and can handle what the world throws at us, so I was rather surprised how much it got to me, which made me realise just how down I was feeling.
Luckily for me, there was a “safety net” that worked really well. We have been really impressed by the professionalism and helpfulness of the “front door” to Social Services (Warwick [01926] 410 410) who even make follow up phone calls well after every one else has gone home. If, for any reason, you feel reticent about using this approach (don’t be!) then Guideposts (or South Warwickshire Carers in the South of the County) have other channels that will help. As always, just ask, it is quite surprising how helpful people are.
When this happens to you, it is difficult to remember that people don’t go to work intending to make a mess of things – it just happens occasionally!
Fortunately, wherever something goes wrong, it can be fixed – and there are loads of “good guys” out there that really do want to make things work, and, in reality, there are no “bad guys” wearing black hats and villainous black swirling cloaks!
How can we help them to sort things out? From my “previous life” any specific issues are a lot easier to sort out than general ones.
Having spent some time with “the safety net”, I am very keen to encourage them to introduce a simple form of “customer satisfaction survey” after each major contact (or lack of contact!) with Social Services, and / or their agents. We all hear of niggles that can easily become major problems, however if there was a very quick way to detect these issues, then they could be fixed quickly. The current system relies on an annual survey, by which time you have either lost the will to fight, or have simply forgotten what went wrong – we are all very good about forgetting about bad experiences. You could even argue that the wrong people (non users!) are surveyed, but that is another issue!
I think that a more professional approach to soliciting feedback will vastly improve everybody’s lives (the customers and the providers), but will be quite hard to set up. Please can you help, by lobbying your own “special person” in Social Services and Guideposts to try to make it happen? I am sure that Social Services can harness help from its existing customers to help create a form, and even to process the information sent back (don’t tell Nicola, but she can do a lot of this processing!). Like a lot of things, we can help make things just a bit better for all of us – even those “nasty pasties” who occasionally get it wrong!
If we can help get this right, then we can use mistakes to improve the process. You see this with the major supermarkets, if the customer gets it wrong (like a husband buying the wrong thing!) we get a refund with no questions asked, if they get it wrong (e.g. wrong pricing) we get twice the mistake back. This makes us feel good, and we look forward to the odd “bonus mistake”!
Rant over!
It is amazing how things “know” when you are down. We use a remote wireless mouse and keyboard on the PC, so that Nicola can see it through our TV – naturally the remote wireless mouse and keyboard decided to stop working just after its warranty expired, and the shop had to wait for a delivery. During our various cooking / baking sessions it is amazing how eggs crash on to the floor and flour gently covers everywhere (as does soft brown sugar!). The only things that seem to behave are those that would cause no issue if they were to jump off the work surface, such as tea spoons!
A friend of mine recently asked “how we survived” and I jokingly replied “chocolate”! His question raised a number of interesting thoughts – I tend to use chocolate as a small reward, which works really well during our normal life. For example, I do an hour or so weeding then have a cup of tea and a piece of chocolate. However, when life turns a bit blacker, then the chocolate rewards become more frequent – leading to clothes becoming mysteriously tighter and my diabetes not being too good. Perhaps a new strategy is needed, or money for more clothes!
I still like the general strategy (it is the same we were taught when I played cricket in the Yorkshire league – bat for the next ten runs, and then the next ten, etc. When you get to fifty, aim at sixty, etc) but we have introduced apples for chocolate and mix up tea and coffee as significant rewards. It seems to be working, and the clothes seem to fit again.
The two of us need “an escape”, which is especially important for Nicola who has drifted into being housebound. We are trying to read more, and Nicola has widened her range of PC “games” (e.g. brain training; sight training; etc) which really suits her skills, aptitudes and interests. We are both escaping into the fantasy world of model trains which allows us to create our own small world, and have been surprised how many people have a similar fantasy world to escape to.
Thanks for reading this, and please help with my campaign!
Last words – the new “remote mouse and keyboard” is much nicer to use than the one that failed (thanks to Media Shak in Rugby for the new one), and we got a really useful (free) brochure from “Warwick 410 410” called “Care Services Directory 2008/9 for Warwickshire”.
Bye for now
Graham
