I was so chuffed to be asked by Matthew to do a guest blog. Matthew is such a star raising awareness about carers’ issues that I feel honoured that he has asked for my views!
I regularly do a slot at Corporate Induction for South London and Maudlsey NHS – “What it feels like to be a carer?” . It is great to have a “captive audience” to get the message across about the valuable work that carers do and how involving them has a real potential to make the medical professionals’ job easier – not more complicated as is often believed to be the case.
I start my little talk off with the fact that to describe my role could involve a lot of expletives – in fact over the years I have used words that I didn’t even realise that I knew.
The printable words that come to mind are – exhausting, relentless, frustrating, constant battle, hopeless…..
Caring can mean putting your own life on hold – it is time consuming enough to be battling to get professional help and to care for your loved one without having to fit in anything like a job or a social life. Caring therefore inievitably has a negative effect on your own life – both financially and otherwise. Don’t get me wrong – it’s not that I have completely resented this in the past – it is just the way it is.
I have cared for my Dad (mostly at a distance) as well as another loved one living at home – different roles with different problems. Neither was easier than the other – just different. My Dad had some truly lovely careworkers living with him whom he became very fond of and who I trusted to take care of his day to day needs – other family members and close friends lived by and were great – but I was still very much in a caring role – sorting out Dad’s finances, organising prescriptions, liaising with the care worker agency, liaising with social services, popping down to see him a couple of times a week, going to hospital appointments with him etc etc… I felt and often was “on call” 24 hours a day.
Looking after a loved one at home was perhaps more emotionally draining. I will admit to there being times when I have sat down on the kitchen floor and cried – out of exhaustion, fear for my loved one, stress and just with what seemed like the sheer hopelessness of the situation.
It is not easy being a carer – from my personal experience, I definitely wanted to “fix” my loved one, wanted my loved one to be well and accepting that I couldn’t “wave a magic wand” and make everything ok was very hard.
What I could and did do was to try and get professional help for my cared for person. Might sound easy – but believe me it wasn’t. There was ridiculously long wait for an out-patient appointment (approaching 2 years!) – during this period my loved one was cared for by the GP who was brilliant and alerted services when things became critical. This involved a sectioning team turning up on our doorstep – over the years this has happened no less than four times – it might have been more… The first time I had no idea what to expect. A team of four turned up unannounced – it was lucky we were in! I was told in no uncertain terms that I had to leave the room where the team were talking to my loved one – and I was told that if I didn’t my loved one would be removed from the premises (forcibly if necessary) in order to carry out the interview without my “interference”. This was my home and I was being asked to vacate part of it in what can only be described as an agressive manner. The sectioning didn’t happen my cared for person managed to talk themselves out of it – oh – if only they had spoken to me – I could have told them the reality of the situation. How, oh how can I person be deemed ill enough to send round a sectioning team and yet members of the family (there were 3 of us in the house at the time) not spoken to/asked what they think. It made no sense to us then and still makes no sense. This is just one of the frustrating experiences I have had as a carer. I could probably write a book about them…..
I have struggled with so many things… patient confidentiality – as any carer will tell you is a nightmare. Medical professionals can be so very scared of breaking this that they choose not to speak to carers at all.
Another problem I have had is Carer Confidentiality – what carers tell medical professionals should not be related to the patient – they have just as much right to confidentiality. Sadly this does not seem to always be a known fact. (This leaflet from the Royal College of Pyschiatrists is quite helpful.)
I have felt that I have been labelled “angry”, “difficult”, “pushy” carer and probably even one to avoid. A lot of these problems could so easily have been avoided by simply involving me a little, listening to me.
So – in answer to Matthew’s question….”What does caring mean to me?”…. It means never giving up no matter how tired I am, battling to support and help my loved one whether it is wanted or not, caring and worrying about my loved ones whether they are living with me or not, caring and worrying about them even though they don’t want me to (because that’s what carers do), always being there – just in case, getting up every morning and trying again and again…..