Wednesday 19 December 2012

A Sort of Christmas Blog


I don’t know if it’s just me but as a carer you sometimes feel tragedy deeper than you used to… you think more sometimes of those left to pick up the pieces from whatever has happened, and easily get emotional about things

 
Like many, I imagine, when I first heard the news of the tragic incident at the Sandy Hook school in Newtown USA my initial feeling was of horror, disbelief… but as the evening wore on, and we heard Mr Obama speak of the tragedy my horror turned towards emotion, the human aspect took over from the more practical earlier response, and I came very upset, emotional.

 
A couple of days later I sat transfixed as the President delivered the eulogy or speech at the memorial in the school… I felt overwhelmed by the emotion, I did shed tears… more than one… as I started to wonder how those who were left would cope with things, especially at this time of year. The shooter has stolen Christmas for a whole town… a state… and I just don’t know what any of us can do to help those broken souls.

 
However, I am not writing about that incident, it serves as a lead in and to introduce a point I will raise later.

 
I want to introduce you, especially those in the UK, to an army of lost and broken people, people who have no hope other than that despair may lessen… people that are left isolated in a world of their own that none of us can penetrate, none of us can understand, which we all fear… for ourselves and in others. The group of people who get so little support… they are not in the public eye, or given a second thought until something goes wrong.. something like Sandy Hook.

 
I am talking about the 25% of us who through no fault of their own are suffering with a mental illness, and for all of those who care for them.

 
Christmas is coming, as we right a week today is Christmas day, and after a very nice day this evening I have attended the most bittersweet uplifting heartbreaking evening I can ever remember.

 
It was the unit Christmas party at the hospital.. a treatment and recovery unit within the NHS where they look after long term mentally ill, with serious issues, and restricted hope of re-entering society.

 
If you don’t think that these people, and their carers, need and deserve massive support from the medical profession and also from the public at large… come with me the next time… open you eyes to what is happening… it may just change your life. It will change you mind and heart.

 
So, to the party, we arrived just as the carol service was starting, I greeted the staff who were standing around the back, and could see the patients, mostly with care workers, sitting at the front. She sat there, looking blank, not looking towards where anything was happening, but maybe not really seeing anything anyway.

 
The OT next to her called me over to take her seat, with my wife, and I sat there, took her hand… she barely responded.. the patient on the other side took my hand and acknowledged me then turned away.

 
The Chaplain was doing a reading… I was really listening… I looked at her… saw no sign of recognition or understanding… the pain in my heart just grew… and grew… I looked round looking for some hope, something to focus on… I saw the gentleman who wanders around all day in food-covered clothes, dribbling, and grunting… he was in a smart suit, collar and tie… mind you ill fitting, he had obviously lost weight through his illness… and still looked so ill… but his face was radiant, he tried to sing the carols, at the top of his voice, the sounds that came out were not particularly intelligible, but he looked so radiant it made me go weak at the knees… here was a man so devastated by his condition but able to rise above it for a special occasion… hope is never far away, but seldom rises above the surface as it did here.

 
I looked back at her.. still looking blank, still holding her hand but still no real sign of the love, passion and understanding we had almost taken for granted for so many years… I continued to look around, looking for hope, for understanding..

 
I saw rows of patients, all singing, trying to sing, the carols… I am not a “Christmas carol” sort of person, I am now frightened of Christmas… but this was somehow uplifting… these people are so lost, lost within their own bubbles… there seems no hope, no respite, but they were singing Christmas carols, looking angelic, looking dare I say happy… I give me hope, I tgace me encouragement… perhaps that is why I was crying by them… the tears were flowing freely.

 
I looked back at her... her mouth was moving, just, but no sound coming out… was she trying to sing the carols? I don’t know… I’ll never know. She used to love that.

 
I know if she had been the well one she would have sung beautifully, without needing the songsheets, and said how uplifting the event was.

 
But she sat, unsmiling, unseeing, whether she was hearing, understanding, enjoying we will never know.. I like to think she was… I have to think that.

 
After the service, as the tears started to slow, a shutter opened and dinner was served. I took her to the servery… she pointed at the vegetable curry… good choice, she would always have gone for that, and I took it back to a table and sat her down with it.

 
It looked good, tasty… I gave her her knife and fork to eat… she put them down pushed the food away… by now most other patients had their food and were eating it energetically… she barely looked at it… I gave her the knife and fork again… she looked resentful, I tried to get her to eat and eventually she had a forkful and pushed it away.

 
After about 15 minutes persuasion and cajoling she sarted to eat, reluctantly… she always seems to think she doesn’t deserve to eat… she was like that, and said it repeatedly, before she was hospitalised.

 
As everyone else was going for seconds, and the carers were going for firsts, she was struggling to take her second forkful.

 
After the meal I went to get a desert.. some were piling for or five pieces of cake onto their plate and eating it hungrily… spraying it everywhere… over clothes and tables… innocent joy at what is normally a forbidden pleasure. Compare that to the lady looking so lost with a piece of cheesecake in the bowl of her spoon… holding the bowl with fingers in the cheesecake…. Trying to put the handle in her mouth

 
After the food the karaoke.. now that always brings me out in dread and a cold sweat… but the patients were going up to the mike, opening up, singing… for the most part even with the lyrics on the screen the singing was unintelligible, the tone awful.. but there is no doubt that these lost souls were absolutely glowing in the joy of the event, of the fun….

 
I look at her again... the same blank look… where is she focusing? Who knows? What is she thinking? Who knows.. occasionally she will clap a couple of times more or less to the music.

 
While I am looking around I have commented on the way the staff are sitting with the patients… why is that… its because most of them don’t have visitors, family, with them… I’m there with her… the cantankerous guy in her unti has his family with him.. but then again, they are there as much as I am… and the others… well, they have the staff with them.

 
That is why I call them lost… their conditions have become too much, visiting is so upsetting that people gradually stop.. they become forgotten… pray god I don’t do that, but I can feel it in me… I will fight against it…

 
And what of the carers? They are easily recognised… the patients look lost… the staff are in uniform… the visitors, the carers, always look tired, stressed, burnt out cases… you will have seen it many carers you know.

 
So, as we leave, what are my emotions… so mixed… I have seen hope and joy on the faces of people who have been abandoned by society and friends… I have heard them sing carols and recite the Lords Prayer.. my spirits rose with that… but I have seen her there… she would have loved it if she’d really been there… looking blankly at the window… struggling to understand the food before her was hers to eat… unable to manage cutlery… unable to speak or communicate and no facial expressions or body language to suggest whether she got any pleasure or anything out of the event… I have to think she enjoyed it… one of the nurses said she seemed to have enjoyed it, nut I am long past the being able to recognise that in her.

 
The tears flowed, as I said, during the service… even while I felt some uplift because of the look on other faces, but my overriding feeling is of heightened loss and despair… tears are close to falling even now, probably will before the evening is over… but I cant change anything.

 
And here we come back full circle to the shooter who robbed a town of Christmas… nothing, but nothing can justify or excuse what he has done… forgiveness is not possible. We still seek answers to so many questions… but one thing that seems to be clear is that the man had a mental illness… now that doesn’t excuse his actions… I cannot condone any aspect of what he’s done… but I also have questions. My experience of the Mental Health Service in the UK, and what I hear of the service in the USA, show so many failings, so much neglect and a huge level of disengagement, so we have to understand if his mental condition has been allowed to fall through the cracks and build to this pitch… for the sake of everyone we have to start giving mental illness a proper status, have to start understanding it better at medical levels and as a society, and for god sake lets try to stop the next massacre before it happens