2011 a rotten year

As this year of 2011 draws to a close, it is a time to look back at what the year brought, and to look forward to what the next year may bring. To be honest it doesn’t make good reading. I will be so pleased to see the back of this year, it has been one of the worst I have gone through, and the future doesn’t, on the face of it, hold much better, it not all bad however, there have been some good things and hiding deep beneath the soil, under the snow, there are signs of life, reasons for optimism. Like all such signs, it is now up to me to nurture them and make the most of them, and I hope I have the strength, judgement and courage to do it.

As the year starts Jane has been in hospital for 18 months, the performance of the Adult Mental Health Service has been disgraceful, from the delivery of care on the ward, medical support from the doctor and complaint handling process from the CEO and his directors. I was unable to sit in a room with her consultant without my legal advocate in support. I am going through Carer Education Training Programme learning about Mental Health and how to cope with caring and on the edge of a total breakdown. Not an encouraging start for a year.

I was going to various events with local voluntary mental health support groups, partly for the support I was receiving and partly to start to campaign against the inadequacies of the AMHS and County Hall, and at this point met John Wallington, Chair of a local Carer Support group. After a couple of conversations I was invited to join the Management Committee and embark on a life of Mental Health Support.

However, the main emotion at this time was depression. I was heading deeper into depression, was unable to look after myself properly, clean the house and was starting to have bad thoughts. I daren’t drive alone at night because of the temptation to pull into the traffic coming the other way.

I was persuaded to have a week away, and went to spend time with my cousin in Christchurch. This was a turning point for me, I remember sitting on the bank of an estuary, with the sun setting behind the reed bed and the waders drifting in to roost on the mud flats. This was a turning point for me, I saw the beauty of the world again, understood the majesty of nature and started to feel much better about life.

The next morning I had a call from the hospital to say that Jane was being transferred from the ward from hell to a treatment and recovery unit, which I knew to be excellent. This removed a major problem for me, I had never felt her safe on the ward, never had confidence in the staff and had total contempt for the consultant. This move was so positive for us, and I was able to put the black thoughts behind me and start to recover.

I was now fully involved in Carers Action, had gained knowledge from the Training programme and starting to fully understand the advice and support I was getting from my Carer Support worker. The treatment Jane was now receiving was exemplary, so I was improving daily.

At this point things at work started to deteriorate, I found I had to work every weekend, without a break, just four days a week, but every weekend. Now this wasn’t a problem initially as Jane was in hospital anyway, but after a few weeks I realised it was affecting my life, without the weekend I wasn’t seeing the grandchildren, wasn’t able to meet friends for a coffee, or even follow the football. This may sound minor, but was starting to really hurt.

During this time Jane was not showing signs of recovery, she was still unable to communicate, but was at least now eating and drinking properly.

As the summer wore on, I was starting to feel a bit calmer about things, and was pushing my complaints harder and further in search of answers, more importantly in search of improvement.

After a great deal of pushing, ranting and cajoling I met with the new director of Adult Mental Health Services, and was invited to participate in a programme of “Improving the Experience” later in the year.

By now I was deeper involved in Carers Action, attending events to represent the group, taking the message of support into the community. I was also getting involved in Leicestershire LINk and joining their initiatives.

So, I was getting busier working for mental health support, through this process I was meeting many new people who I am now delighted to call friends. I was also meeting people involved in Mental Health Campaigning via Facebook, and becoming close friends with them as well. I even started to use twitter, and found myself following and being followed by others in the same sort of situation, mental illness sufferers, carers and professionals. These contacts have inspired me and I know I am in a position to continue the work, and need to do so. It has given me a real purpose for the first time in my life.

Around this positivity my wife was still sinking deeper into whatever condition she has, there is still no diagnosis, and showing no sign of recovery. Conversation was impossible, she was unable to communicate and has little memory or recognition.

I was starting to believe that recovery was simply not going to happen, but the doctors were still talking of recovery.

As summer moved into autumn, the situation at work had deteriorated to total misery, I was pushing harder and harder for a solution, and a solution came, not necessarily what I wanted , but a solution. I was being made redundant. I knew that if I was not working I could not afford to pay the mortgage, so things were looking bad.

I took my courage in both hands, made an appointment with the consultant and asked for an honest appraisal of Jane’s long term condition. It was not a happy conversation. Although there was no diagnosis still, the long term was not good, it was made clear that there was not to be a recovery and Jane would never be able to rejoin the community and come home.

This was obviously a devastating blow.

So, we are in mid autumn, I am to be out of work at Christmas, my wife will never be coming home to live, and I have to sell the house and downsize to afford to live. I fairly difficult situation I think. To crown it, I had also been diagnosed as being diabetic amongst all of this.

I had two choices, sink under the pressure, give up, despair or to see it as a new start… I took the positive view. I owe it to Jane to achieve improvement in the AMHS, I will fight this cause as long as I am able to, it is important for me and for thousands of others.

I am obviously devastated about losing my wife this way, so many of our dreams have been blown away, my heart bleeds because she is unable to enjoy her gorgeous grandchildren, I don’t know what quality of life she has, is she happy, content, does she have any emotion or feeling, she cant say, I don’t know. My heart is broken into a thousand pieces but I know I have to carry on, and I am devoted to the cause of mental health support.

Due to having a great deal of holiday, I was able to finish work in November, and the difference it made is phenomenal, I have been feeling so much more relaxed, in control and happy. It is a mixture of now knowing and accepting the situation with Jane, and taking a major stressor out of my life.

I am now working on the Improving the Experience programme, working with LINk on the new acute pathway plans and working with Carers Action to get carers more involved in the processes, and to get them the proper level of support.

As the year ends, Carers Action is about to take a higher profile, partly through my influence, I am due to attend a host of meetings on Improving the Experience and Acute Pathway projects, am tweeting and blogging regularly about mental health issues and have a real commitment to the cause.

In so many ways life is positive. I have a cause to fight, I have many new friends and acquaintances, new interests in writing and tweeting, the support of a wonderful family and friends, and from the carers support groups.

However, all of this is put into place by the situation my wife is now in. She doesn’t deserve to be going through all of this, doesn’t deserve to be afflicted as she is, didn’t deserve to be mistreated as she was by the hospitals. My heart bleeds whenever I think of it, and I think of it often.

My life has been totally bound up with her for some 38 years, I have now lost her but have the pain of knowing she is still there, but just a shell of the woman I love, we cant be together other than for fleeting visits, can’t have a proper happy life and retirement, those dreams we had will not now happen.

So, at the end of the year, as we approach New Years Eve, I am torn. I have many new challenges, all of which are exciting, many new friends but on the other hand I have lost the thing I love most.

How do I feel, I am devastated. Mental Illness is a destructive force, it destroys sufferers, their families, it never goes away, it drains every emotion and resource we have… and yet it is the Cinderella of conditions. It gets little or no publicity or support, after all it is a taboo subject because of the perceived stigma.

We have to change that. We have to raise the profile of what mental illness can do to people and families, and we have to work to improve things for sufferers and carers alike. We have to educate the public to make them understand. I have a role to play in that, and will play it to the best of my ability and strength as long as I can.

Only by doing that can I cope with the loss I have sustained, a loss which has robbed me of the best thing in my life, my one true love. I will never forget that, and will do all I can to change things. It is too late for us, but I have to make it better for current and future sufferers.

That is my pledge for life.