Hard day, but improving...

I normally try to be positive, after going through an horrendous year or two, despite everything, I was feeling really great… thats when life sneaks up on you unawares and kicks you down again., To be fair it hasn’t kicked me that hard this time, well all things are relative, but it has had a massive impact on me, such that I was nervous driving in the dark again yesterday, I have had these bad feelings in the past and thought they were gone forever…

I have had really bad days after a really good patch, and I just don’t like it, it has really thrown me and my confidence has gone again… so I need to put it down and get it out so I can move on again.

So what has happened…

I am currently unemployed and am working with the local Adult Mental Health Service and a Consultancy  called April Strategy, I am the care representative and one of the facilitators of the project. The project is called “Improving the Experience” and after a couple of months planning and training, booking venues and so on, we are now deep into a process named “In Your Shoes”. The events run for two hours, and how it works is that carers or patients come along and each is hosted by a service provider, could be anything from team leader, Manager, Nurse or even ancillary worker.

The service provider sits with the patient/carer for an hour and the listens to their story , They will also make notes of all the key points on post-its, the carer/patient has an hour to talk about all the good and bad experiences they have had in the service and attempts to define a perfect service provider.

Then after a break we get together in small groups and the professionals read out their post-its and we can group them, with everybody else’s into categories, and highlight the main them or success and failure, we then agree between us the main headings that the Trust has to improve on.

I have now told my story to 5 different people, it is a very tiring and emotional experience, but is also cathartic, you see the empathy, feel the support from your listener. At the end all of the points are raised and you realise others have the same sort of issues. All in all the feedback from everyone involved has been so positive, so encouraging, the service providers learn many things that shock them, here many things they expected to hear, but the main thing is that they take them on board and are taking positive messages back to colleagues.

I left Wednesdays event, my second of the day, on a real high, it so so good to have the staff listen to your issues, accept them and undertake to help improve.

So why the misery?

On Thursday I was due to attend a carer group to talk about the process, to encourage people I know have issues to come to a special big event where we were preparing to bring in literally dozens of staff to listen… The meeting was cancelled because the care worker didn’t show up. Only one other carer was there, so we had the meeting on our own… no problem there, a coffee and chat with someone I have got to know through the group over the last year.

From there I went to a Management Meeting of Carers’ Action, a Mental Health Carer support group I work with. Now I do have a bit of a clash with my colleagues, in that I use twitter, facebook, blogs, message boards regularly to tell my story, the story of so many thousands of carers who don’t have a voice, whether it is because of illness, lack of resources or lack of confidence.

My colleagues, and we are all no longer in the first flush of youth, are dead set against any form of interactive electronic communication, refuse to add to message boards oon the media because they are dangerous, and to be honest often are more concerned about upsetting the NHS or County Hall than in really supporting the carers. That said, we have achieved an awful lot over the last few years, but it could be so much more.

Thursdays meeting was not good, we have what many groups have, a number who speak good sense or stay quiet and a number who talk absolute bollocks and talk long and loud, and inevitably they carry the day when it comes to a vote. I left after two hours totally confused, we had made no decisions, although two of us kept trying to get back to the plot and ask for decisions, and I don’t think any of us took any projects or tasks away to do. It really was frustrating, and it got me down…

So Friday dawned, hoped for a good day, seeing my daughter, weekly shop, take my mum to the hospital for physiotherapy then visit my wife in hospital.

Earlyish in the morning, I got an email from the AMHS to say we had to cancel the special “In Your Shoes” carers event because we had only two people registered an interest in coming, we had long conversations and decided to reschedule it to run alongside another group to make it worthwhile.

I was thinking we are doing all of this to help these people and they don’t want to help us… I know it is hard to do it, it is difficult to talk about a bad experience in the Mental Health Service for an hour, but I know the staff are well trained to cope, and were so supportive and empathetic with everyone, that everyone who attended to talk went home happier and more confident when they left

I got the message out to all of my contacts, only one of whom had responded to my earlier emails inviting people to the event, about the rescheduling. Later in the day I got a message forwarded from the NHS co-ordinator, a bitter attack from the leader of a carers group, basically criticising me and saying we were being discriminatory and excluding the ones who wanted to go on that particular day.

Now, I woulod have thought that this Carer Support leader, who knows me, knows my story, knows about the depression and lack of self esteem would know better than to go effectively over my head and not involve me. That upset me immensely, another blow I didn’t need, on top of knowing the very people we are fighting for don’t want to cooperate.

These things, however, were not going to get me down, they were relatively small issues which I would cope with reasonably well at present.

It was the last thing that got me…

When I got to the hospital my wife was looking very sad, now she can no longer read, sew or do any of the things she loves, she cant get up and look after her washing herself, cant dress herself, needs help to eat, and worst of all can’t communicate now. We talk to her, have no idea if it is going in and registering, there is no clue.

We went and sat in a quiet room and I started to talk about the grandchildren, as usual, now I love my children and grandchildren to distraction, so does she, but she doesn’t seem to remember them without a lot of prompting, she was looking at a photo album we had done for her and I realise there were tears running down her cheeks.

She couldn’t say why, couldn’t say if she was upset… it is hard to witness that. Gradually the tears became a torrent, and she was sobbing. I got one of the nurses, they are all angels, and she came and gave her a tablet (lorazapam I think) to calm her. She continued to sob, no amount of hugging or comforting made it any better, didn’t stop the tears… gradually she fell asleep, but was still sobbing in her sleep, after 20 minutes, it was getting near to meal time, so I thought I should wake her and go, so she could eat… gently woke her and she continued to sob… the nurses helped, I couldn’t take anymore… look I will never walk out on her, never desert her but it is more than I can manage to stay with her any longer than I did when she is that bad.

I came home, put the shopping away and realised I was crying, all the little frustrations crowded in and I blamed them for my upset… but it wasn’t that, it is obvious why I was so upset.

When you have shared a life with a person for nearly 40 years, had children together, gone through a miscarriage and life in general you are close, and there is nothing worse than seeing someone you love in this condition. It is truly heartbreaking, you want to give up, you feel guilty for having a life while she is so ill and missing any quality of life, missing seeing her cherished grandchildren growing, and they missing a grandma… life can be so cruel, I always come away feeling upset, but when you are with her for 90 minutes, and she is sobbing the whole time it totally shatters you… it really has been too much for me again.

Last night, I used facebook and talked to a dear friend for an hour or so, started to come back to myself, and today have been subdued but starting to get things back into control.

I will be back at the hospital on Monday, strong again, and able to support her as she deserves, but I can only do that because I can write it out of myself like this, I have special friends who will talk to me, who understand, and a lot of support and encouragement via the social network channels.

So for everyone out there who has supported me in any way, everyone who have said kind and supportive things, everyone who has shown they understand, thank you so much, without you I could have gone under again… I am coming back, and I will carry on fighting the authorities to get a proper level of service for mental health sufferers and their carers, I will continue to fight the system to try to remove the stigma that makes life so hard for all of us….

Finally, I am here for anyone who needs someone, check out @mralbionman on twitter, make contact, and I will help as much as is in my power to do so.

Bless everyone out there who is lost and suffering, may the pain ease, and you find some comfort.