One Shining Moment

It is February 2011, my wife has been on the acute psychiatric ward for 18 months, the treatment has been so appalling the relations between myself and the medical team have totally broken down, have no trust or respect for them, they show a frightening lack of integrity and ability. My own health has deteriorated until I am suffering with depression, frightened for my wife’s safety on the ward, feeling guilty about existing, finding oncoming traffic an inviting way out… I am at a low ebb.

I go on holiday, to my cousins on the edge of the New Forest to try to escape the pressure and nightmare I am living through… this is what happened on the Thursday of my week there.

I got up and had breakfast, mechanically, with my cousins, emotions still low, not really feeling but going through the motions of enjoying a holiday… a holiday totally alone despite being with them…

After lingering I go out for the day, walking just walking, always just walking in the forest, it should be helping, it isn’t particularly but I’m not seeing the appeal of the on-coming traffic now, so there must be some catharsis here.

I’m driving… my phone rings… I pull into a car park, it’s at Hatchett Pool, a particularly favourite spot where the forest melts into a wide stretch of water, alive with sunlight dancing on the unbroken surface.

I take the call, I am staggered, it is from the hospital, it is just to tell me my wife is to be transferred to a different, more appropriate unit, under the influence of a new doctor. They say it is so they can have a second opinion on her… it could be because my now loudly expressed views of the consultant have made it impossible to carry on with the status quo.

Whatever the reasons, I don’t care, it is a joy to me that the transfer is in place. A worry less, I know she will be safe on this new unit. I sit by the pool, put in earphones, and just sit on a bench and glory to the sound of Mahlers Resurrection Symphony… it’s not a cheerful piece, or an easy piece but it is an inspiring and wonderful piece of music.  I could feel my spirits starting to rise.

After the music I got back in the car, drove towards the coast, and stopped for a coffee and Danish pastry… I was still feeling low, still saw no future, no hope, for me… bleak days and years appeared to stretch out in front of me, just mourning for a lost love, a love who will, it seems continue to live in a twilight world, undiagnosed, never improving, never deteriorating… I felt hopeless, but at least no longer worried for my wife’s safety. This was, had I understood then, a real step forward for me. I didn’t understand then, we never recognise turning points at the time do we?

I think it’s time to get back to my cousins, but I don’t want to, I need to be alone, need to think, need to try to find out what I am thinking, I don’t recognize the sensations I’m feeling still.

I decide not to go home, I drive to a nature reserve on the estuary. I carry my camera, always carry my camera, and a bag…. The bag contains a book, bottle of water and my ipod. Everything I need to be happy and relaxed, everything that is except for the peace of mind to allow me to enjoy it.

I walk slowly across the reserve towards the water, the sun is low, geese and swans are flying in to start to settle for the evening, I should be revelling in this but it leaves me unmoved. I can see it is lovely, but can’t feel it is lovely. I plan to walk to the river, ipod playing, listening to favourite music, and sit on the bench overlooking the water, read until it is too dark, then go home for dinner and to try to talk of shoes and ships and sealing wax…

As I near the bench, the sun is very low across the water, shining however on me on the bench… as I look up the there is a low narrow mudflat exposed by the low tide before me… the water glistening in the pink twilight and the geese  creating magical ripples on the glassy surface.. across the water are the reed beds, turned crimson by the backlight from the low sun.

Further behind is the low hill of the headland, and the clear sky above it. There is no-one else in the area. I haven’t looked at my book, it remains with the water in the bag. I switch off the ipod and sit in total silence watching the sun on the water.

A lone curlew drifts on the breeze and lands soundlessly on the bank before me. Under normal circumstances I would have my camera out and be photographing the reeds, the water and especially the curlew. My camera remains on the bench, I am spellbound by the scene, the curlew, the sun on the water, the reeds glowing pink and orange in the evening light…

I have a new sensation… my eyes are damp, there are tears flowing, but not all tears are bad tears. These were tears partly for what I’d lost and would likely never recover, but mainly for the simple beauty of what I am seeing… it has raised my heart and spirits in a way that I could never have imagined.

I see beauty in nature, I see hope, I see a future before me… it may be alone, it maybe with my wife… only time and medicine will determine that. The main thing is that I see a future, and a reason to walk positively into it.

I also know that the hospitals must never treat anyone else the way my wife has been treated, so what started as a fairly abstract commitment to carer support, blossomed into a mission… I had in that twenty minutes seen beauty, found hope and also found a purpose.

The most cathartic 30 minutes of my entire life. I have no photographs to record any of it, but I have the images imprinted in my heart… they sustain me in the darkest hours.

Although my life has had ups and downs since that evening, I continue to suffer the thralls of depression, I also now have some very bright and optimistic periods… and I always remember that evening, the curlew…. It always brings me peace and comfort, however dark the hour.

In the midst of pain… beauty can blossom and bring hope, bring encouragement and be a light for all of your darkest moments. Those moments of beauty are rare, transient, we can’t look for them… they find us. Our responsibility is to recognize what we have been given and to use it for the good of ourselves and others.

I think that, for once, I passed the test.

Guilty as Charged

“GUILTY”

As I hear the foreman of the jury deliver this one chilling word I start to slump forward in the dock.

The Judge speaks, I don’t hear every word he says, my head is reeling, I feel sick and my legs wont support me, I hear his final words “… for life… take him down” and I’m roughly seized by the arm and led down the stairs behind the dock, unheeding, into a twilight word of wakefulness, I come round, I’m sweating, the pillow no longer gives me comfort as I realise that although this was a dream, the familiar dream, it is all true, I am guilty and  and will serve a life sentence for it regardless of what I think, what others think or say. Nothing will change that…. Sure I’ll come round, yes, I’ll carry on but I will always carry that feeling. For me that dream will never stop being true, will never leave me.

What have I done that deserves such a punishment? I just don’t know, but I know it’s just. What am I guilty of? I have lost my wife to a living hell of dementia and am now about to commit her to the anonymous twilight of a residential nursing home. God please let me get this decision right if I’ve got nothing else right in my life, because if I get this wrong I don’t think I can live myself any longer.

Yes, I am culpable in my wife’s condition.. I could have made better provision to stop us running up the debts we had, I could have protected her more when she should have been grieving, I could have been more understanding and supportive at the times I got angry or frustrated, I could have seen the signs sooner and dealt with the illness quicker, I could have fought the authorities harder for help when she needed it, whatever I did I could and should have done more… I don’t know what I could have done more, but the fact it didn’t work shows I could have done more.

I knew how much she hated been in a psychiatric unit in 2004, but in 2009 I fought to have her re-admitted… I had to, I couldn’t cope any longer with her at home, she needed round the clock nursing care, but I just couldn’t deal with it. I asked, indeed fought, for her to be readmitted… if I hadn’t done that I wouldn’t have seen that look… the medics asked if they should admit her, I said “yes” and after a couple of phone calls the nurse said “come on then, lets get you to hospital”.

She looked up at me, first time she looked my in the eye since she’d started to deteriorate and with the unshed tears gleaming in her blank eyes said “Now?” very quiet… she couldn’t have reacted more dramatically if I’d ordered her to be executed. That look cut me to the heart, like poisoned darts penetrating my being. It’s a look I see in every waking hour, a look I will never forget as long as I live, and something I will never forgive my self for. I had always promised and vowed to protect her, I was now rejecting her and condemning her to her own hell. I know I had to do it… there was really no choice… I know that… but Christ that look hurts me so much to this day.

That look, that fear and my guilt are key factors in my passion to reform the mental health service.. the treatment she and I got under the Adult Mental Health Service was frankly disgraceful from day 1, and I will continue to fight for improvement as long as I have the strength to do so.

I feel at least partly responsible for her illness and dementia… people will tell me I shouldn’t but it’s not that easy to switch it off…

Since she has been ill we have been blessed with a second grandchild, I love both grandchildren to bits, and talk to her often about them… but I feel awful doing so because I know how much she would love them if she were well, how proud she’d be, how thrilled everytime he said “grandma”… but she has none of that… she doesn’t see much of them… stuck in a psychiatric unit it is difficult… she is missing them growing up. I am loving seeing them… one hug, one kiss, one “love you grandpa” transports me to heaven despite everything, but then I feel guilty because having condemned her to hospital and being unable to have that pleasure.

Simply by being close to mental illness the stigma that the ignorant feel has cost me most of my friends… my real friends have been so supportive and understanding throughout despite their own difficulties… these are real friends I am proud to have. I have now as a result of my campaigning work met many more people, have many more friends, new friends, and I feel so guilty about having a new life that she doesn’t even know about, cannot be a part of, and I feel guilty about that.

I have myself suffered with depression during this period, the guilt I feel has brought me down, the exhaustion of the worry that she wasn’t actually safe on the psychiatric ward has drained me, the fighting with the AMHS tog et them to acknowledge their shortcomings and improve things has exhausted me.

Put that together with continually travelling to hospital to visit, eating ready meals late at irregular times, has affected my physical health. I feel now so permanently tired, exhausted that my social life has all but died. I have been made redundant and diagnosed with diabetes2… how much either of those situations can be laid at my own mental state is impossible to say… but I have my beliefs on it.

My moods and spirits have been a roller coaster, mainly down, I go through periods when I can’t look after myself, let alone my wife… it’s not like me to wear the same underwear and clothes for several days, to go days without a shower, without even combing my hair let alone washing it… but it is where I am now.

I have recently started to read again, I had barely read a book for three years, but I’m now able to concentrate enough to read, and am reading avidly again, I am enjoying the books, but the thought is always there… she would enjoy them as well, some she had chosen, but will never read them now. Cannot read anything.

The illness has robbed her of everything that makes life worthwhile except life itself. Her life now consists of sitting, eating, sleeping. How much she hears she understands, we don’t know. We don’t know if she hears.. she can’t communicate anything, cant speak, even in hospital they have to guess if she is in any pain, and give painkillers if they think she is… they have to get her up, to wash her, to dress her, to get her food and encourage her to eat, they have to take her to the toilet, what chance would I have at home, alone, to give her the care she needs and deserves if the hospital staff can’t do it? None.. but that doesn’t stop me feeling guilty  because my whole being cries out to me to do just that… I can’t look after myself, let alone her… but still I feel guilty about it.

This is the reality of depression for many people, many families, don’t EVER tell me you are depressed because you have broken a finger nail before going out for a diner, don’t EVER tell me you have a lot of work to do so you are depressed. In the past I have gritted my teeth and ignored it… next person to do it won’t be so lucky because feeling so guilty, so shamed of what you’ve done, that you can’t look after your wife (whether those feeling are justified or not) makes you angry, bloody angry, and to have people belittling the illness like that is insulting to every one of the wonderful people out there who suffer depression and depressive illnesses.

So, with those thoughts in my mind, I go back to bed, settle down with the duvet in the half empty bed, and before long I am back in a small room, surrounded by police officers and court officials before being told “it is time” and being led up a short flight of stairs into a wooden pen and looking across at a stern faced judged and a jury, and hearing the woirds “You are charged that….”

Depression is... real

Depression. The word is so easy to say, so easy to undervalue and misunderstand, because we have all used the word instead of a bit down in the dumps for a moment… and it bloody annoys me.

Why, because too many people think depression, clinical depression, doesn’t really exist, they think it is a showbiz affectation used by actresses who are currently between jobs, or need sympathy or attention.

I know from experience it exists, and I know what a destructive, frightening condition it is. No-one chooses, or welcomes, depression. Depression doesn’t ‘run its course’ like a cold or the flu does, once you have suffered depression, it is with you for life, in one way or another, it never leaves you.

The other thing is that to an outsider, you can’t see depression. You tend to see some of the symptoms, you may see someone who can’t be bothered to get out of bed, someone who has no motivation to do anything. You may see some you decide is a scruff because they do not look after their clothes, their make up, their personal hygiene.

You make judgements, because you are conditioned to do that, down the years, generation after generation has shut the door on mental illness. Historically mental illness in England has been grounds for divorce, grounds to be thrown in debtors prisons, cause for locking away in a padded cell in an asylum with no care.

We are now in the 21^st Century, and thank god we have moved on, but we haven’t really moved that far have we? We can’t talk about mental illness, it is taboo, it is as unwelcome at the dinner table as discussing incest or cannibalism in the family, yet we can talk about loved ones suffering from cancer, cardiac problems, injuries and so on… those things are acceptable conditions.

Although my wife has had acute depression since 2004, and now has vascular dementia, so many people, close family members, cannot bring themselves to say that she has a mental illness… she is just “unwell”. They may describe the symptoms, but to use the words, god no, what would the neighbours think.

The truth is more people will suffer from mental illness than will suffer from cancer, or cardiac illnesses… one in four of us will suffer mental illness at some stage, so wouldn’t it be better to bring it out into the open, talk about it, try to understand it… Don’t think that because you are old, or young, because you are black or because you are white, because you are fat or because you are thin you will not be at risk. Don’t begin to think that being honourable; being religious, being vegetarian or anything will spare you. Mental illness is totally non-discriminatory, every last one of us, regardless of background is susceptible to mental illness. We all know much about cancer, heart attack and so on, unless you have been personally involved in mental illness you have no concept of how destructive it is.

Next time you see someone, or hear of someone, who doesn’t get up in the mornings, who doesn’t wash or use deodorant, who wears ill-fitting dirty clothes, I bet you will judge them. You will condemn them. You will have nothing to do with them. Maybe they wouldn’t want your sympathy, maybe they are simply slobs, but there is a damn good chance that they a lovely people, like you, who are suffering with depression… because that’s something depression does to you.

You lose zest for life, have no motivation… you simply can’t get up and look after your personal hygiene, it is not simply that you are too lazy, you simply cannot do it. Your mind is in a shutdown and doesn’t understand concepts like that; you are simply unaware that the concepts exist.

Despite this person suffering from one of the most damaging conditions known to man, most people will simply judge them; condemn them; they will certainly not understand or accept them, and it simply must end. We must get people to understand about the destructive force of mental illness, to give sufferers, and their families, a chance to have some respite, a break, some relief.

Don’t think either, that mental illness affects only the patient… it affects the whole family, mental illness is never ending. You can have periods of remission, with medication and care you can even control it to an extent. You can’t cure it or escape it though.

I have seen at very close hand how depression destroys people, when it is someone you love, it is very hard to cope with, of course bereavement is difficult to cope with, but most of us understand it and are equipped to deal with it and in the fullness of time get over it. With mental illness the patient is lost to you in many ways, but still alive, still functioning albeit not particularly well. It lasts for ever, you never know when you wake what you are going to face on the new day, or the next hour, maybe your partner will not be able to get out of bed, maybe they will get up and but not know what to do, where to go, where to sit or stand… You cant leave them alone for any time, not if you don’t want to spend the whole time worrying yourself into an early grave, or risk them harming themselves, not necessarily deliberately, but through lack of understanding

As a long term carer for a mentally ill wife, I have been pushed into being a service user myself, I’m lucky because after what I’ve been through I recognize the signs of onset, and I no longer fear the stigma. I am prepared to shout from the rooftops if necessary that I am suffering with depression and take the help and support I need to keep myself going.

I have been in contact, through many mental health activities both in person and via social networking, with so many people who are suffering mental illness who have the strength and courage to talk about it, write about it and even fight for understanding and support. These people are so brave, unless you have been there you will never understand how courageous these people are… how much it takes to publicly state their condition, to try to educate people about it, to provide support to others.

This year I have attended a number of events talking about mental illness, and have had a number of people say that they are sufferers, or carers, but hadn’t realised before, or who had assumed that they were on their own. There are potentially millions of others out there in the same position, suffering quietly, stressed beyond belief, incapable of a proper life but simply cannot accept it, can’t tell anyone about it, so things spiral and get worse.

The reason that most of these people can’t speak about it is shame… shame caused by the stigma which is perpetuated by you, dear reader, who has no understanding, no interest in the sufferings involved. You will continue to judge us, continue to make life difficult for us, continue to think us a third class citizens until you learn.

If it takes you to suffer mental illness to understand, so be it and I’ll be there to support you if need be regardless, but I’d rather you learned about it by opening your minds, by trying to understand, by finally realising the key words in mental illness. The key word is illness. It is a fault in the workings of the human being, just like cancer or the flu… it sdoes not make ius freaks

Please try to listen… please try to understand us and make our lives that little bit more tolerable

Not the Best of Weeks

Well, last week was a pretty damn bad week, it ended with me being severely stressed in a way that hasn’t happened for a while, so I feel I need to write about it. This is not looking for sympathy, what is, simply is, I cant change it, but I have moved on from it.

To make sense of my week I have to recap briefly on my history… My wife has a track record of depression, and became ill again 3 years ago, and has remained in hospital throughout the time. I have known since last October that her illness meant she would never be able to rejoin the community, never be able to come home. I have had time to come to terms with that.

In March we finally got a diagnosis, not a good one, it is vascular dementia, and that we will need to find her a care home. The hospital unit she is in, who have been truly superb throughout the 15 months she has been in that particular unit, is no longer the ideal place for her, and they are working with me to find a suitable home.

We also have a Social Worker (I will henceforth call him Jim, because it is a simple short name, easier than keep saying social worker).

Any, a few weeks ago Jim started looking for a home, we had discussed options, and were looking initially, for homes relatively convenient to where we live, to make it accessible for the family. Nothing was happening, so I contacted a local home, a very prestigious home.

This is now three weeks ago, I got a call from this home, to arrange to visit my wife in hospital to assess her. I don’t know if this was in response to my application or Jims to be fair. Anyway this was arranged for the Tuesday. On Friday Jim told me he was seeking appointments for two other homes, one of which phoned me and the hospital and we arranged an appointment. The other one simply turned up, without morning on the Monday.

On Tuesday we had the first assessment, but the lady had to come back after a funeral, to complete it. Sadly she came back just in time to see my wife laying into, and pummelling, a member of staff, and having to be restrained by thre people, sedated and secluded. When the other assessor arrived a bit later, she was comatose, having just come out of seclusion and being sedated.

Lets call the houses A, B & C. Jim phoned to tell me that B & C had turned her down, and that A had accepted her, he confirmed by email, but unfortunately the email said A had turned her down and B had accepted her.

As A & B are a good 40 to 50 minutes away, I asked if he had considered any more accessible homes. No, he hadn’t.. so I recommended one to him, who assessed her the next day and virtually offered a place.. they accepted that the aggression was connected to some medication that she was no longer taking.

So, eventually, we come to this week… lets start on the Monday.

In the morning we visited this care home, and took my wife’s principal nurse with us, the house was excellent, the greeting from the staff friendly yet professional. However, looking round a care home for your wife, who doesn’t know about it, who knows something is wrong but probably not what, is a fairly miserable exercise… talking about your wife in terms of how much help and support she needs… what the problems are and so on.

Anyway, dropping the nurse off afterwards, I visited my wife, who was in a bad state, very down and subdued and very hard work. Not an pleasant experience

He Tuesday, we had a CPA, everyone involved was there, I had my daughter and my Support worker there with me, and god knows I needed it. I didn’t learn much new, the discussion was amicable, constructive and friendly. What I did learn from the Nurses report was that my wife had been secluded again the previous night, had been in bad state and had to be sedated again.

The meeting progressed, and we all had to discuss, in front of my wife, who looked lost, tearful, frightened throughout, the options around nursing homes, power of attorney and other legal requites as though she was not there.

It also became clear during the CPA that Jim had misled everybody about the homes, none of them knew what he had been talking about and had different ideas of what he had said. At least I was not on my own on that one.

After the CPA, which lasted a good hour, I had the task of going through the Power of Attorney paperwork with her, it is a legal requirement that I do my very best to be sure she understands it. I hope you haven’t had to go through that experience, but if you haven’t, I wonder if you can imagine just how bloody painful this morning was.

Wednesday was a different day. I went out for breakfast with the family, which was delightful, and came back so we could finish relaying the floor in the living room. Now this was a pressure situation as well, because in order to sell the house it became necessary to redecorate, which involved relaying a section of wooden floor. Now this was pretty hard work, as was the decorating, especially as your heart isn’t in the decorating, because you don’t really want to move… I have to for reasons we needn’t go into. But I do not want to. That makes it very tough, very tough indeed.

So, Thursday, I spent al morning, in fact until 3:00pm finishing off the living room just in time for the estate agent to appear and take the new photo of the new look living room.

I then had an hour or so before going off to my mums for dinner. I picked up an email from Jim. He told me that the Care home had now decided not to accept my wife. That was a major blow.

What was worse were his explanations..  he said she had been rejected because she is too young and will soon be back in hospital. Can you imagine what impact that has on someone in this situation. If you can’t, let me tell you… it is bloody devastating, totally devastating and frightening, especially when you can’t get hold of him to ask more details. Why will she be back in hospital? The doctors have never suggested that.. what’s going on?

He also said that the hospital were pushing to get her discharge to a home in days… so having only the home, whether it be A or B, which is totally inaccessible, and I hadn’t seen because I didn’t know until now which one it was, I was in a very stressed state… anxious, worried, frightened, couldn’t think straight, couldn’t sleep at night.

On the Friday morning I contacted the home. The things that Jim had said were not true. They had turned her down but for perfectly valid and acceptable reasons. The home were also disappointed that I had got the message in an email, he said he would have phoned me, but Jim had promised to do so… he didn’t

I mailed Jim next day to put my views forward, maybe none too gently… but having put me through this after the events leading up to it was too much for me.

I had a call from the hospital who confirmed that there was not the urgent pressure for a discharge, they, like me, simply want the best conclusion for my wife.

I went to see the manager of the unit Jim works at, it was someone I have met previously and worked with on a project, so we had a fairly constructive relationship and conversation.

It seems that Jim did not know that the homes he had selected were so far out, and didn’t actually know any closer. I suggested he may have access to a map, or have noticed when he went out to the house. The explanation was simply that he normally works in London. Doesn’t change things in my view… he should know this stuff, or at least check it out.

Anyway, not a very good week, but don’t think that this was all that was going on…

I learned that a dear friend has a potentially serious illness, I had regular calls from the hospital… My wife had been secluded 4 times in the week, twice for attacking members of staff, once for attacking another patient, and once for attacking a visitor.

On top of that the incontinence was getting worse again…

And finally, what I think broke my heart… was that whilst I was with her one afternoon, a nurse came in and said she had found this in her sink… it was most of her engagement ring… but there was a large section of the ‘ring’ bit missing, so it was just a semi circle… the first time since she had it it had been off her finger.. and she was not aware of it.

Yes, I know others have had worse weeks than this, I know that to some a week like this would have been a bit of a relief… but for me, already exhausted, emotionally, physically and mentally, the pressures and stresses of this week just were too much for me… I couldn’t take another like this.