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"Hello, I'm Tim. I'm a Carer" Two small sentences which may well have saved me from drowning.
For nearly thirty years, my wife has been repeatedly affected by intermittent attacks of stress-related illness, some of them requiring hospitalisation, all of them bringing normal working life to a halt.
About two and half years ago, my wife just said one morning that she didn't feel as if she could cope with the new term at her FE/HE college. "I've been here before," I thought, calmly. No warning bells rang. "A month away, and some medication, and then it's back to work." I gave up my current contract, sorted out the college (we had no visits at all from management or 'friends' from the staff room) and then I turned myself into school taxi-driver, cook and cleaner, while my wife sat and thought about whatever she silently wanted to think about. We had both worked in education at a fairly high level, and it all stopped overnight.
We had some savings, and when I got round at the end of the first month to see the Job Centre people, they said – basically – come back in six months time when you have nothing. I should have shouted for detailed advice at that point, but I'm independent, resilient, experienced – or so I thought - and was too involved in getting sucked into the black vortex of my wife's continuing illness to struggle for help and advice on how to sort out the financial and pension complexities – an area where I have never ever felt at home or confident.
Weeks, then long winter months rolled by uncharted and without change. Our daughter, in the midst of A levels, decided very sensibly that her greatest priority was looking after herself, and became almost overnight a grown-up independent person, though still living at home and requiring three hours transport a day. Tough cookie.
When she left to go to university, I finally had time to take stock and look at the tangled mess we found ourselves in. By this time I was having to take over all my wife's daily admin: bank letters, car loan, house bills, all the work which she had so effortlessly completed in her previous healthy life. Our small circle of friends shrank almost overnight, as people could not, or did not know how to interact with someone who was clearly enmeshed in the downhill spiral of a mental illness. I was by now doing all the tasks which required interfacing with the outside world, such as shopping, driving, as well as managing the house for such things as planning, food and cleaning.
Four walls do not a prison make, but your own home can become a cage without you realising it. The limitations of not going out for a walk on a sunny afternoon, of not speaking to another person for several days, of not being able to move outside the highly structured and unvarying routine of daily life, they all creep up on you unnoticed. To other people living around us, I had quite simply become reclusive, politely answering the inevitable " How is your wife?" with a defensive and anodyne reply "She's not bad, thank you" at the same time as a silent internal voice says quietly !No change, no progress, no hope."
Then, one day, threatened by a phone call from some persistent financial agency, I called the Citizen's Advice Bureau for guidance. I am not generally a believer in guardian angels, but that day one was working extra diligently on my behalf, for the coincidence of a volunteer with specific experience in working with a mental health charity, and my obvious inability to cope with even simple questions about the type and extent of support my wife was receiving, led to the suggestion that I might be in need of help as much as my wife – but for different reasons.
When you have spent a lifetime being in charge or with jobs of fairly serious responsibility, the realisation that you have failed is like a sudden storm; needing “help” is not something which normal people need unless they are ill, and I wasn't ill, quite definitely wasn't ill, and quite definitely did not need or deserve help.
Unknowingly I had reached a metaphorical brick wall and could see no further roads ahead. I agreed to a visit from a support agency, to explore what help was available. Enmeshed in a long list of support jargon came the suggestion of contacting someone who worked in adult care support, with phone numbers and a name.
I chickened out for two, perhaps three weeks, wary, suspicious, even afraid of admitting, admitting
what - I just didn't know. Then one morning, coming across the piece of paper with the contact details, I reached for the phone and dialled into sunshine. A voice made an offer of an appointment, of a visit to me at home; this was not the anonymous voice of social services officialdom with a check list and a set of business objectives and quotas; this was a voice of someone who was experienced in helping carers with no horizon, someone who understood words like 'frustration' and 'defeat', someone who was prepared to travel to my house-cage and listen and talk.
The meeting took an hour, perhaps and hour and half, or even more. I now have lots of leaflets with all the contact names and numbers, summaries of my rights and benefits (which I never knew I had!), information on confidentiality, access to the website, an invaluable book on Everyday Emotional Wellbeing, Education Courses, and enough information on the NHS Partnership to make me realise that I am not alone in being a lonely carer.
But the inch-thick pack of paper is nothing compared with the tremendous relief that I can ask for support from someone who understands the maze of caring for a person with mental health problems. Not just one person, one dedicated and highly skilled professional, but a whole team behind him with the knowledge, skills and experience of working with thousands of people like me in Somerset.
I was immersed in loneliness, drowning in ignorance, overwhelmed by a loss of direction. I am still there to a large extent, and it is going to be a long process back to being fully in control. Much will depend on the progress my wife makes, if at all, but now I have a chance to put back something into the system to say 'thank you' for saving me from drowning.
My carer's Assessment Worker asked me to a carers' meeting . We then sat round and I took first step back to being more of a real person again, when I said “Hello, I'm Tim. I'm a Carer”.
I first met my CAW in December 2009 when she was introduced to me by my daughters care co-ordinator. Before my CAWs involvement there was no support for families like mine, who experience extreme stress and disruption in every day life, due to our child's illness.
Below is a list of the money problems I have experienced as a carer and the ways in which my CAW has helped.
Providing feedback. There have been may people involved in my daughters care. It can be difficult getting feedback after appointments and to find out how things are going and what is being done to move forward. My CAW has been hugely helpful in talking to the various professionals and feeding back to me on where and how things are going. Without this support I would have found it difficult to know how best to support my daughter as my understanding would have been limited.
Providing practical help and emotional support. My CAW is always on call if I need her. It can be very difficult to speak to my daughters care co-ordinator due to her lack of time. My CAW always calls me back if she can't answer at once. This means that I've got the vital support I need during times of crisis. I can't imagine how I would have coped through the last 12 months without her support.
She gives me helpful, practical advice on how best to support my daughter through the various difficulties she experiences. This means I am better able to cope.
My CAWs role in supporting my family has been invaluable.