Positive Good, Negative Bad

Anyone who knows me will know that I have been one of the harshest and loudest critics of our Mental Health service, the Leicester Partnership Trust, (LPT) over the last 7 or 8 years…  there is still a great deal wrong with it… but there is a change in the wind.

I have made many criticisms, valid criticisms… never invented a story, every criticism I have made is true, during most of the time we have been in their care you don’t need to invent stories!!! However…my experience is not the whole story… no one persons’ experience is ever the full story.

I want to redress the balance and talk about press freedom and how it is not always the positive force that we see it as.

So, for several years I fought the LPT and pointed out their shortcomings, eventually, partly due to changes at the top they started to listen, they started to understand.

I am now in a privileged position where as a volunteer, I have been invited into a number of their training and development projects. Throughout the last two years we have had absolutely first class care and support within the trust, the care and treatment provided at the Willows unit has been as close to perfect as it is possible to get, the staff there are simply wonderful. I have found that being able to share and to compare and contrast my negative and positive experiences is proving effective in informing future directions and styles within the trust. 

I am absolutely delighted to give my time to work with the LPT. I find that there is a huge commitment to understand where things have gone wrong in the past and to not only put them right, but to take the service up to the next level, and I know that with the commitment and enthusiasm shown within the trust they will succeed magnificently.

Not only do I have a personal involvement with the LPT, but I am delighted that the two Carer Support groups I represent engage fully with the trust to work together to bring about improvement and development.

I believe it is the right way to bring about improvement, there are many carer and patient support groups, all working towards the same end, all with their own speciality and angle, and it is important that we all work together, we can only progress if we work together towards the same end, support groups and service providers working together in harmony to bring about the improvements we all crave.

This is where I feel the obstacles to the improvement start to show. We meet so many carers and patients in our roles who have disengaged with the LPT because of previous bad experiences, anecdotal evidence and of course articles in the press.

Local press does influence public thinking, whether consciously or subconsciously is maybe debateable, but it happens. If you look back over the published articles over the last few years, all you will see is negativity, anger and blame. Yes there have been a number of tragic situations within the LPT over the last few years, many of them ending tragically in death, and in many cases some level of blame lies with the performance of the LPT.

It is important that these incidents are fully investigated and evaluated; it is I believe important that these stories are in the public domain and that lessons are learned. That staff failing in their responsibilities are taken to task and dealt with appropriately.

However, as I said earlier, this is not the whole story, although if you read the local press you would be justified in thinking that it is. When the local press have the stance that they will only publish articles where they can condemn the LPT and it’s management… they will not publish the countless success stories, not will they balance the negatives with the many triumphs within the LPT, they will not take interest in the many positive initiatives within the LPT to ensure improved service.

One reason for the need for the tragedies to get into the public domain is that it will it will stoke the drive for improvement, the trouble is if the same press refuse to acknowledge the positive initiatives, the public will not become aware that there are huge steps being taken already to improve.

Even more disturbing is the attitude within a number of our fellow support groups. We are keen to engage with the LPT and other service providers, and they are keen to engage with us to ensure that they fully understand the needs and requirements of carers and patients.

Sadly, some of the other groups do not have this spirit of engagement, they simply want to criticise and condemn the Trust.. I really hate this mean spirited negativity on the part of a couple of well known support groups whose only agenda seems to collate lists of problems to browbeat the LPT

I recently attended a meeting with one such group, the tone of the meeting was appalling, so negative and damaging. They took a positive guidance and advisory document that the LPT had put together with the help of carers and patients and wanted to use it purely as a tool to criticise and condemn, with no intention of offering any solutions, alternatives or stating what is needed.

Their only plan was to visit the LPT and list everything that was wrong, in their eyes, so they could tell the LPT how poor they are.

If this misguided group of luddites had engaged at any time, they would have been very aware that no-one is more aware of the problems than the LPT itself, they openly admit there are problems and are making tremendous strides to improve things.

Even within my own groups there is a residual element of this attitude, there is a negativity that continues to threaten our chances of moving forward, an element of living in the past that says “they did this 10 years ago, so it still happens now and will never change”

This negativity, at group or individual level, is damaging. It damages the people concerned, it damages the efforts to improve things and, most importantly, it damages the carers we aim to support.

I have seen so many carers burn out, youngsters burnt out before they’ve grown up, older people old before their time, carers in distress and struggling simply because they are carers and not being supported. It is my goal to work with support groups and service providers to make life for these people better, more supported and less isolated. I believe that the negativity of the press, and of some of these o called support groups and individuals is ultimately harmful, because it stops people seeking the help they need when they need it. I would honestly ask all of the support groups who promote negativity and gloom, and all of the individuals in so called support work who are there to talk about it, impress their Womens Institutes and Golf Clubs with their Charity work, but wont actually do anything constructive, wont even support colleagues who want to do positive things to help to just fade away into the obscurity they deserve, find something else to sit and pontificate about because the are frankly a waste of space.

So many people have disengaged from the LPT. The negativity expressed in the press and in the groups I have highlighted carries into the community, it destroys any faith the carers out there may have in the service offered and doesn’t allow them the encouragement of understanding how much improvement is already underway.

Throughout this, I have referred to the progress and support within the LPT… of course they are not the only service providers in this County, I just wish I could speak as enthusiastically about our Social Services, sadly I cant, they are still locked into the bad old days and show little or no commitment.

Many other teams at County Hall are doing wonderful work within the field of mental health support. They are showing a level o f compassion and commitment which, like the LPT, has to be admired.

I would love to see all support groups and local media show the truth, yes there are major problems to overcome, but there is a huge amount of work in place to do just that, improvements are coming through everywhere, the LPT and many teams in County Hall should be proud of their efforts, and should have them broadcast loudly, not face the continued carping negativity so prevalent.

Now, next job is to work on the Social Services… I hope we can between us turn them round as well.

LPT Getting it Right

Hmm…. Around 18 months ago, most of my conversation was dedicated to slating the Mental Health service in Leicester (Leicestershire Partnership Trust – LPT), after all we had had some really bad experiences with them in the past, and the previous two years in their care had set new heights in terms of incompetence, dishonesty, stupidity and downright negligence… levels of horror so high that you would think that they actually studied long hours to see how many ways they could find to abuse, insult, neglect and antagonise their patients and their families… and don’t think that this is a maverick view held by just myself… from my experience a staggeringly high percentage of the people in their care share my views… the number of patients they allowed to escape or worse, take their lives whilst in their care hardly reflects to their benefit!

What did I do about it? Did I sit back and say “it’s just the NHS, it’s the way they are”. Did I hell… I kicked, screamed, fought and campaigned until something happened. Despite being told by the then CEO, that if I continued my complaint it would adversely affect my wife’s treatment, (I told home it couldn’t possibly be any worse) I pressed on, holding my ground against idiots at all levels of the LPT…

The thing in my favour I think, is that even then I understood that you cant take the clock back… what had happened to my wife and I happened… whatever I did it could never change it, the harm was done, and I always included that statement in my complaints, whether spoken or written, however much I ranted and cursed at the trust, and always said I wanted to help them become competent and caring.. I wanted to engage with them to bring about improvement… I didn’t want to see others go through the crap we had gone through.

I did however want three heads on plates.. I got one, one was investigated by the General Medical Council and the other transferred… I still want these two to accept responsibility for their lies and callous lack of care….

However, my complaints led me into uncharted waters, as the senior management changed, to be replaced by quality people who actually give a damn, there was a tide of change flowing across the Trust management.

I was initially asked to join a project called “Improving the Experience” which though focussing initially on the Community Health Teams, is designed to resensitize the staff to the more humane aspect of nursing… I got thoroughly involved in this project, got to know many great people within the Trust Management, and learned to understand that they understood and accepted how awful our experience had been, how awful so many peoples experiences had been, and I saw how keen they ere to improve and get it right.

This gave me my first kick of encouragement and confidence for many a year.

As the project continued, I got to know the staff well, and as my regard for them continued to rise, it seems their respect for me rose in parralel… and before long I was “the usual suspect” when it came to supporting and helping the LPT as a carer representative.

To cut a long story short, I was invited to join a small committee reviewing how the Trust handled complaints… hopefully  damn site better than they handled mine, and again the will to understand and improve was immense.

From there, with my two carer groups, we approached the LPT with an offer to formally support them and to help to regain the public’s confidence in them.. and out of this project came my involvement with the Recovery College, a new initiative aimed at providing recovering patients a chance to learn life skills to enrich their lives and cope with their conditions. A truly wonderful initiative, which I am thrilled to be deeply involved in from the beginning.

I have also now got into an additional project, setting and defining patient clusters (awful name) to ensure that patients are given the most appropriate type of treatment throughout their time with the LPT.

I am also now working with the County Council on various Mental Health projects as well as some “one off” events with Time to Change, Centrica, Rethink Mental Illness and Nicky Morgan MP.

I also work devotedly with my two groups, Carers’ Action and Labelled, where we take a pride in working with the rust and service providers, advising, helping and supporting, and always putting the interests of our carers first, always working to be sure the service provider know what carers want and need, and working with them to provide it.

I work with th groups to engage fully with the service providers, we have seen the benefits coming through already, there is a definite improvement in the attitudes and performance within the Trust, generated I think by the new management team, which is slowly sowing dividends at all levels within the Trust.

I have also been to meetings with other groups purporting to support carers, but I cannot support them, their attitudes are disgraceful, even now, all they want to do is to gather ammunition to criticise and condemn the trust. They have no understanding, nor indeed interest, in the marked improvements we have seen, nor the brilliant initiatives in places and working to fully revolutionise the service, to fully embrace the needs of the patient and carers and to provide fully holistic treatment to everyone involved in mental illness.

These moves are so positive, they promise so much to ease the burden of carers that I can only step back and admire what the Trust are now doing.

In my career supporting mental illness, I have worked with individuals who it sickens me to think of as being mental health campaigners… they are negative, spineless fools who want only to impress their local womens institute or golf club, some are so old that they just aren’t living in this world, they cling desperately to the Uriah Heap principal of campaigning… ie ask a question, but only if it wont embarrass the service provider and not ask for an answer.

Even worse are the groups that persist in allowing these pathetic specimens to dominate the group.. the are a number of these groups locally, and I will continue to support the LPT in their efforts against these useless destructive bodies as long as they continue to launch and develop the fabulous initiatives that they are currently working on.

I will not name the individuals or groups here… but anyone who knows my campaigning stances will know exactly who I am talking about, if you don’t know, ask me privately, off the record, I may just tell you.

So, I know the LPT is in very good hands now, the improvements will not be seen at ground level immediately, there is a culture of wrong to be overcome, but the LPT is going exactly the right way to change things, and I for one will celebrate with them when the lot of the carer is improved by their efforts.

Here I will name names… after the crap we took in the LPT a few years back, I had no hope for them ever giving a damn, let alone getting it right, but through the fabulous efforts of a large group of people, not only is the a huge compassionate heart within the Trust, but a huge will to get it right, I would therefore like to thank a number of people I have, and am, working with, for their commitment, compassion, and above all for what they have done for me, as an individual, to raise my spirits and self esteem… so I toast John, Paul, Richard, Sam, Becky, Nicky, Kate, Terri, Debi, Chris, Dawn, Mark, Jules, Girish and all of those whose names I have missed for the support, kindness compassion and help and for giving a damn and helping carers.

Yes, the LPT is now in good hands.

How was your 2012... this was mine

So, how was 2012 for me… good question, but me being me, there just isn’t a simple answer to it. The curates egg has nothing on my life over the last few years… neither does a roller coaster. They model their styles on my life. However… the current mood lives and breathes optimism and positivity… but lets not get ahead of ourselves, it wasn’t always thus.

As the year 2012 crawled malevolently over the horizon it looked set to top its predecessor for misery and despair… and to be fair.. made a damn good job of it to start with.

On January 1^st 2012 I was in a dark and lonely place, at the end of the previous year I had been diagnosed as having Diabetes2, had been made redundant and learned that my wife would never be well enough to rejoin the community, to come home, she was to be in hospital, or a home, for the rest of her life.

So, there was not a lot it seemed to look forward to.

I consider myself reasonably responsible, so I wrote to the building society to say I was worried that I would soon be unable to pay my monthly mortgage repayments, and asked if the was anything that could be done.

They were full of compassion, the curt response was simply write again when you are in real trouble.

How was my mood… I was having to sell the family home because I couldn’t afford to stay, which made me feel like a total failure… as I sat in the house all I could see was my wife having those awful fits and seizures that the Mental Health team didn’t think were worth them bothering with. I saw no hope of getting a new job, and once the house was on the market viewers were not impressed by our bookcases or decoration… so with a heavy heart I set out to redecorate top to toe… didn’t want to … hated doing it… but it had to be done.

At this time I was totally lacking energy, I couldn’t bring myself to do any cleaning… that had been true on and off for a few years in fact… couldn’t see the point of anything and was once again withdrawn and inward looking. My social life was again nil… I darent drive at night anyway because the oncoming lights were too tempting for me… yes, I was that low.

It was at this time things started to happen, things had got so bad I either had to give in totally or rise, phoenix like, from the ashes of my former life… and I didn’t care which.

At this time I was thinking of quitting the carer group I was working with… for two reasons. One is that I was totally hacked off because they were so ineffective, so luddite, so cowering and humble that they were, in my view, actively making things worse for carers. Also at this time a silly mistake of mine, tagging an email to a friend as well the management group… We all make mistakes… led to so much vitriol and stupidity by two particularly pathetic members of the group that it almost destroyed the group.

I was disappointed that the group seemed to want to bend over to appease these two twats… they didn’t mind that they were stopping us from doing any support work, and spent hours talking about how to most effectively grovel.

My counsellor at this point kept me going, and I had started to develop a much closer friendship with an individual I had met in the carer support groups over the previous years, this friendship inspired me and I was introduced to a brand new voluntary organisation, Labelled for young carers.

It was at this time I went to a ward round at the hospital and learned that my wife had vascular dementia and that deterioration would continue to be quite rapid. A later ward round brought the bland announcement that her life expectancy was seriously restricted…

During this period I was in my darkest moods, at my highest despair and simply had to take time away from the group or I would really have done something I would have regretted… had I survived…

I was however again writing to try to clear my mind… this time I wrote an article about Labelled and was fully adopted into the group… this was a turning point…

I started to get involved with the group, their youth and vitality grabbed me by bootlaces and pulled me away from the precipice… things were improving.

Things at Carers Action were getting no better, I gradually went back to the group, but the issue of the two twats was still paramount, we were still doing nothing…but I thought id stick with it, though doing as little as I could get away with.

Then a strange thing happened… I was painting the living room ceiling, the penultimate room on the agenda… I was hating doing it, I had loved the old decoration and now it was all just magnolia… when there was a knock on the front door.

Any excuse to stop painting, I would even have chatted tot the Jehovahs witnesses.. but I recognized one of the men at the door.. our old insurance agent, hadn’t seen him for 15 years or so… but didn’t know his friend. Anyway, in they came and we chatted, I explained about my wife, and why I was selling the house.

They other guy said he may be able to help… he was a financial advisor. To cut a long story short, he was able to buy out my three personal pensions, get me a 25% tax free lump sum and an immediate pension which was more than the sum of the three was projecting had I left them untouched until retirement. Add that to the DWP deciding to pay me a pension rather than unemployment benefits and I was able to pay off the mortgage, put a significant sum into a savings account, reduce my monthly outgoings by a huge amount and end up better off than I was when I was working.

This off course was a huge relief.

I took to retirement readily. Now I knew I wasn’t going to have to move or get a new job, I was able to devote myself to voluntary work and make a play for the Chair of Carers Action.

All this time, with the encouragement and support I was getting, I was growing stronger, still missing my wife terribly, still grieving daily and still sleeping badly, if at all, but generally I had accepted things and was starting to live again.

As the year progressed my association with Labelled developed, their support helped to develop my self esteem… I started to believe.. I took a more positive role in Carers Action again, chaired a number of meetings.

Then on a personal level, the autumn brought some fantastic developments, I joined an on line carer support group, feel I was quickly accepted and have been told that my positive approach and encouragement had inspired a lot of the members, I have become firm friends with so many of them, so many new friends world wide, and so much encouragement and support. It makes me feel good about myself again.

I have other friends, online, who I have known for ages, their stories make me feel very humble, nobody should go through what they have gone through, and are going through, yet despite it all we are good friends, and these people still have time to care for and support others… they have been real inspirations to me, have helped me keep going and my heart bleeds for their situations.

I love all of these people, they bring me comfort and support, they bring me affection and real friendship. I am honoured to be trusted to share their stories and to call myself their friends.

Even more, my ramblings in this blog brought me a message from an individual who had been my closest friend in our scuffling days, and we hadn’t met since around 1977… but through this blog we got in touch, met for coffee, and now meet weekly… to crown it, we also traced another dear friend from those days, and we all now meet regularly…back in the day we drank copious amounts of Newcastle Brown Ale, talked of wine women and song.. nowadays we drink varying amounts of coffee, discuss our ailments and have to stand periodically to relieve the knee cramps!!! But the friendship is deep and unaltered.

I have also renewed another dear friendship, from maybe 10 years ago, which is now flourishing and will I hope continue for many more years…

So, as I leave 2012, I have become Chair of Carers Action, which we have kick started into a proactive organisation genuinely supporting carers, I am co-CEO of Labelled and am fully devoted to both groups, as well as now working on a host of projects with the LPT (Leicester Partnership Trust) the Mental Health Service locally.

I am getting real fulfilment from this voluntary work, although I am doing long hours, I welcome everyone, I am really thriving and revelling in the work, and developing friendships within all of the delivery services.

I am so thrilled to have forged these wonderful friendships through the on line support group and hope to develop them through the year, the renewed friendships, all of them, have made me feel young again. One of my biggest regrets in life is losing touch with people who meant a lot to me, in the last two years I have been privileged to have rekindled 6 of these old friendships, in each case, the conversations seemed to more or less carry on from where we had left it all those years earlier.

The guys at Labelled… well, they were the catalyst… without their support and encouragement I would not have really started on the journey I have been on this year.

So, my resolution, once things sorted out, was to finish all the work in the house, make it mine, and to start a new life, on my own, in the new year… 11 days in, it seems to be going so well.

However good I feel about it though, I am still racked with guilt knowing that I am going on, developing, happy while my dear wife sits in a twilight zone between life and death unaware of what is happening around her. I still feel the loneliness of loss, strangely more so when I am with her than at other times… and the anguish of seeing her in this dreadful unsympathetic tragic condition. Believe me, it hurts more than I can say… but what I do know is that were it me in that state I would want her to make a new life. I believe I am doing the right thing… but it is not easy, it is emotionally tearing me up, but thanks to the wonderful support and friendship I am now honoured to share, I am getting through it and am now doing pretty well in life.

I have referred to many people in this piece, I have not named names because I may miss one… I believe everyone who knows me and reads this will know where I am referring to them.. though at least one I know wont believe I feel that strongly about her…

Let me say, I have two friends left who have come through all of this with me, have always been there for me, have been the best friends a guy could have… and now I also have so many wonderful new friends, and wonderful re-found friends, that I feel rich beyond measure.

To everyone who has supported me and encouraged me through this turbulent year, I offer my sincere and unqualified thanks and respect… I may not tell you to your faces how much I thank you and love you… but I do.

So, 2013 starts with a positive mind set and looks like being a good year for me… you may disagree, but I think I deserve a good year now.

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

 

 

 

 

 

Caring..at home or away

No-one chooses to become a carer, how many of you would take on a role that keeps you working 24/7 around the clock 365 days a year, has no holidays, no sick pay, no rights, no margin for error and absolutely no salary… in fact it costs you to do the job, costs you in money, costs you in terms of your job, your friends, your health… no, nobody chooses this role.

However, every single one of us could become a carer at a moments notice…. either as a result of a catastrophe such as a motor accident, or by the slow and insidious development of a debilitating condition, which comes on slowly then one day has reached the point where it needs around the clock support.

Your loved one has a cold… you get them a drink… you look after them… that’s caring… One day, for a growing number of people, that caring becomes essentially a full life consuming around the clock job… and you do it without question, because you do look after your loved ones. It is some time later, when you have lost your own self and become a carer, that you realise that you are just that, a carer.

There is an army of carers out there, in fact it is estimated that carers, like you and I, actually save the state some £119 billion per annum… that is a lot of money… a lot of carers.

For so many people, their caring role doesn’t give them a single moment to be their self, to be anything but a carer.. and it doesn’t stop when you sleep, because you are aware every second of the support your loved one needs from you. You do all those jobs that your loved one wouldn’t dream of letting you do under other circumstances….

I am a carer, I care for a loved one who has suffered psychotic depression over 8 years or so, and now she has dementia… she has been in hospital for the last three years, and once the service providers get their act together and agree who does what, she will go to a nursing home. This means that for the  last three years my caring role has been easier than for many people… I don’t have to dress her, feed her, wash her, attend to her toilet issues… none of that… I don’t have to worry about giving medication, making sure it is all up to date. I don’t have to stay in home every hour unless I can get a family member or friend to sit with her… yes, it should be pretty easy. I know I am better off in this respect than dear friends who have cared for loved ones with Motor Neurone Disease, Emphysema, Cancer and the rest,,,, because I can come and go as I please, and don’t have those same pressures of actually looking after her every last need.

However, nothing is that simple is it… my situation is frankly appalling… I am not looking for sympathy, that does not help, but could use some understanding… that is all most carers look for.

When you are caring for someone who is in hospital, has been in for years, who will never come home however long they live… will move on to a nursing home, you don’t have the day to day caring stuff to do.

But it is still your loved one, you still love them, and likely they still love you… but you can’t be together, you are living apart, a few miles apart geographically, but living apart by immeasurable distances in reality. You only meet when you go to the hospital to visit… that’s 3 or 4 times a week for me now, about an hour a visit… so 3 to 4 hours a week with the person that means everything to me, but is no longer that person.

You still care, love, want around the clock, 24 hours a day, that doesn’t change… there is a painful loneliness in that… with friends, wherever you are, you are thinking your loved one should be with you… feeling guilty that you are enjoying something which they can’t, even though they are doing nothing, not far away.

When you are together… the love is still there… friends who have been to the hospital with me say they are touched by the obvious love between us, but it can only show at times through the eyes, through a look…  there is nothing else now, those silly little things you used to do and say together… they go through your mind… you say little things, do some of the little things… but there is sign of remembrance, no gentle melting response, and none of the little gestures and words coming back.

In fact they haven’t spoken an intelligible word for over two years, and rarely even manage an unintelligible one. You think they recognize you, but that would be the last defeat, not being recognized, so you are convinced anyway.. but the reassurance is hollow.

You spend time with your gorgeous grandchildren, and they mean so much to me, as do our children, and you love being with them, but you also find half of your mind is occupied by the fact that she is not enjoying the same thing… you tell her about them, you occasionally see a look of longing… but rarely… sometimes a smile… but rarely, more often the same blank expressionless stare… the one that leaves you feeling lost, frightened and helpless…

The pressures are always there… round the clock.. at least if they are at home you have the comfort of being able to help, I say comfort, I know it is desperately hard work… but sometimes you can crave it to ease the nagging loneliness.

Awful as it sounds, I wish she had died when she became this ill… I can’t bear to think of her just sitting… sitting… not communicating… don’t know even if she has thoughts… I don’t know if it helps that the hospital staff tell me she is often tearful after I leave… yes, me too, but I can deal with it, I can write and talk, does this mean I should go more often? See more of her… I would like to but I find it so hard to see her like this, I don’t think it would help… but then I feel awful because I don’t. go more often.

Whatever the situation, being a carer is a bloody awful lonely role… 

Sorting things out

You know how it is, some jobs you do because you want to, other you do because you want to help someone else and some jobs you do because, simply, they have to be done.

Since I had the pleasure of being made redundant and learning my wife would never be well enough o come home within a few days of each other, you can imagine I have had a number of jobs to do, most of them imposed by my new situation.

On top of that I was faced with selling the house to downsize because I simply couldn’t afford the mortgage any longer without work, I wasn’t too worried because there were so many tragic images of my wife, so many ghosts, that I was uncomfortable living there.

Then it came to a crunch… it became clear that I had to clear out a lot of staff, mine and hers, to fit into a smaller house… also because I wouldn’t be wearing her clothes, using her craft books, they were easy to sort out and clear out… well not easy, but I got through it without too much trauma.

I found that in order to get interest to sell the house I had to clear spaces and redecorate in magnolia throughout… I was doing it to sell a family home that I had lived in since 1980… not because I wanted to, but because it was full of ghosts and I couldn’t afford it.

Imagine how that left me feeling… a total failure… a man who had so lacked ambition and drive, in a career sense, that I couldn’t kee pa roof over the families collective heads, and indeed I couldn’t protect my wife well enough to keep her under the roof anyway.

I am wracked with guilt that I couldn’t do anything to slow down or ease her illness, she is missing out on the greatest experience a couple can have, seeing two gorgeous grandchildren grow up, being a part of their lives, supporting them and your own child. She would have so loved that, but it is not to be…

Now the house, as I moved things listlessly around, redecorated, of course time passed, it took me weeks to do each room, not days, and the ghosts started to fade… I realise I was painting her out of my life… and the ghosts were going as well, and strangely I was beginning to feel more at ease living there.

Don’t misunderstand this, I am keeping some keepsakes, I have countless photos of her, and a head full of the most wonderful memories, which are starting to resurface through the hell that life has been just lately.

So, I now have a home redecorated more or less top to bottom, just the bedroom to go, and the ghosts have subsided to a controllable level, but I still have the problem of selling.

Then it changed, I wont explain the changes, but I have paid off the mortgage and have a few quid in the bank. I also have now retired so am getting a pension, so no longer the soul destroying search through the situations vacant

I haven’t at this stage touched the garden for two years, to say it was a disgrace would be to compliment it indeed, but now I realised that I was doing the jobs for me, because I wanted to, I anted to stay in my home… and am going to. I got stuck into the garden, and 80% of it has been transformed from a 3 feet high tangle of nettles and weeds to something that people tell me looks really nice….

Then comes the last job on the list.. sorting out her own stuff in the cupboards. My wife was keen on craft… cross-stitch, embroidery, gold-work, knitting… anything you can name, except crochet! I don’t know why crochet, but there it is, she cannot tell me now, she cannot communicate at all.

This is where the pain that I cant cope with comes in. Although I have settled again in what I now consider to be my house, my life is improving as I gain strength and slowly start to accept the situation but the guilt I feel that my wife can’t enjoy any of this, she is locked in a cruel and destructive dementia that robs her of communication, of pleasure, of dignity, of friends, family and home, grows by the hour. It is eating me up, and as much as I can put on a brave face when needed, the pain is crippling most of the time… it is lonely being a carer, lonely, stressful and tiring.

This week, tonight, has been bad for me… the last cupboard… almost the last cupboard, this time it is a lot of her craft stuff I have to sort out… three huge boxes.. I remember we went to Bakewell, there is a lovely craft shop there… she got a really lovely fairy picture to cross-stitch, and all the threads, it cost a small fortune.. I remember as though it was yesterday the look of pleasure on her face as she kept looking at it as we walked along, how she kept it on her lap most of the drive home and looked at it… so thrilled with it.. she went out and bought a frame the next day… but there it was, gathering dust, untouched, in the box… not only that, but literally dozens of others, from small Disney pictures which are starter kits right up to huge table cloths and the like, all with one little flower done… otherwise untouched.. many still with a needle stuck in the cloth.

I hoave found loads of sewing frames, and most other sewing things… could almost set up a shop, but it makes me realise that her illness had been coming on for far longer than I realised… what sort of husband can be so blind as to not see this developing.. I have let her down so badly, I feel so down, so sorry for myself… but I shouldn’t, I have some more life to look forward to, it is her who doesn’t, her who cannot enjoy her grandchildren, her who cannot enjoy her sewing, her walking in the woods, by the river bank.. I have all that still, she doesn’t… what right have I to feel so down about it. None perhaps, but by god it doesn’t stop me. I feel totally devastated by it all.

The memories, the lovely memories, that these unused gifts and things trigger in me, I am so torn between the joy and pride of knowing what a wonderful wife and friend she has been to me, and what a lousy undeserved situation we now find ourselves in.

I know I owe it to her to move on, but I can’t, not yet… I know there is no recovery, but as long as she is there, I can go and give her a hug… then I cannot let go, not in the least.

Service? What Service?

I’m confused again, I guess that’s part of the situation I’m in. The last week has been marred by a further involvement with Social Workers…

I received a call form the on-going care team on Thursday and form a Social Worker on Friday. Both calls started by telling she was living at home. When they were corrected they both told me that she was in a particular care home. When I corrected them they were disappointed and said all the costings and reports had been prepared based on her going to that home. I challenged this and they said that they would have to come and reassess my mother.

Now, if you didn’t know, you would think why is he so upset by this. I’ll tell you… the person concerned is my wife, not my mother. My mother, despite her advanced years and frail body is still bright as a button.

It’s not as though that was the only problem. My wife has been in hospital for over three years now, she hasn’t been home in that time. The final issue is the home that they have now done their costing on is the very home that the previouis social worker sent me to look at… which I did and reported back that my wife would go there over my dead body… the place was AWFUL… it needs closing down.

So, the question is, if they have this basic information so utterly wrong, what else have they got wrong… how many other delusions are they working under and how can my wife possibly be getting the support and service she needs when they obviously don’t have the first idea what the hell they are dealing with.

Of course, you may be wondering… is this the sum total of the problems with social services? Is it hell!!!

Three or four months ago, we had a social worker, he was based 120 miles away, but was working this area. He didn’t know any of the homes, or where they were. My wife was assessed by two homes, one accepted her, the other didn’t. Sadly he told me the exact opposite to what he told the hospital, and his written record shows a third option… the home that actually accepted her was the one I reported back as being awful.

When I spoke to his manager to have him removed from the case, I was told that he shouldn’t have referred me to that home because it, well, was not recommended. I asked the obvious question… “then why did he…?” and got the answer “because he is working out of area and doesn’t know the homes”

You have to ask the question.. what the hell is the point?

Anyway, 3 months later, the manager who had taken over the case, had not made any more contact, other than to ask what I thought of another home…which actually was rather good.

Add these indiscretions to the nine years of consistent negligence and incompetence from Social Services and you start to get the impression of why I’m so damn angry with them.

I had a meeting scheduled this morning with my wife’s medical team and the social worker, looking at the options for ongoing care. I took the opportunity to take in a letter of complaint which included some demands including seeing her records, getting regular progress reports, finding out who was responsible for the inaccurate records and what they had done to sort it out and prevent repeats.

The meeting went well, I took a close friend and colleague along to the meeting for support, and we were delighted to hear the Social Worker outlining her progress, or attempts to make progress, to date and the action she was going to take to get things sorted as soon as possible.

Everyone in the room was very encouraging and supportive, nd a way forward was agreed, the Social Worker would lead, and when she got options, she would let me know so we could go and review the home.

After this exchange, the consultant psychiatrist took the lead, he is an extremely compassionate and caring man, he tells you the truth and treats carers with respect and dignity. However, I did somewhat jump when he said the lines that I really thought anyway, but had not been spoken aloud… “You do understand that the nature of this illness means that her life expectancy is drastically reduced”.

After further discussion around medical options, and further reviews the meeting broke.

If you think you now know why I am so angry and upset, you would be wrong.

The social worker took my letter to her boss, who I feel is culpable for much of the inaccuracy, she phoned me… and this is what made me so damned angry… her first line was “I don’t understand what you are angry about”. If she really doesn’t understand, perhaps she would be better working in a European discount supermarket.

Now, the point, yes, I got to it in the end, of this blog is this… When a carer is trying to support a loved one, knowing the loved one will ever return to the family home, knowing that the loved one hasn’t spoken or expressed anything other than by occasional moments of body language, when the loved one cannot get out of bed, wash herself, dress herself, is incontinent, needs to have cutlery placed in the correct hands before trying to persuade her to eat, you can imagine that carer is under pressure, is upset, worried, guilty… in simple terms is not having a very good time.. in this circumstance the carer, whose one aim is to get the loved one into a credible nursing home they need proper support and service from Social Services. The carer doesn’t have the detailed knowledge of the homes in the area, doesn’t know the different classifications, or what level of nursing is required, if the home can offer that level….It is then that the carer desperately needs proper support from social services… what I have had is far from proper support, it has pushed me back to the borders of depression, has caused me to feel to wretched to attend a conference today, and has left me desperately upset, miserable and alone.

Thank you social services.

The other aspect of this, my confusion, which I can’t deal with feeling like this is simple… I now officially know that my wife has a reduced life expectation… her time is limited… we are moving towards the end game. How do I feel.. obviously devastated… lost… but also I have this… is this better than seeing her living in this awful twilight world of not communicating, not being aware of anything, of sitting, looking lost and alone for another 30 years. The prospect of that fills me with tears, it is so tragic, so upsetting… so un-bloody-fair… but death will spare her from that… is it a blessing… put your self in my place… what do you think?

As I said, I can’t deal with this yet.