Dark Days

Continued from "The Truth Revealed"

June 2002

Things were so different in the psychiatric hospital than they were in the psychiatric ward in the general hospital. It was like stepping into another world. On the psychiatric ward where Mr Man had been for his first 3 weeks, the staff mixed freely with the patients. They chatted, they drank coffee together, they went for walks in the grounds, and they played board games. In the psychiatric hospital the staff always seemed to be cooped up in the staff room, engrossed in conversation with other staff members, and not in any mood to be disturbed. Don’t be mistaken; I don’t mean that they were busier, or that they took their role more seriously, far from it. They were engrossed in conversation about their own concerns - laughing, joking, and playing computer games. Whether you were a patient or a visitor, you were met at the staff room door with the same level of contempt.

Occasionally staff ventured into the lounge where the patients would be watching the TV. Two staff members would sit chatting openly with each other. One would be nodding and rolling her eyes as the other complained about having to buy a new hamster for her 8 year old “and these lot think they’ve got problems” as if somehow it compared. The rest of the room would be silent. Or sometimes a member of staff would be standing, as if sitting with patients would somehow contaminate her. “Stop shaking!” she would scold one of the patients, as if the patient had any control over her state of anxiety.

The male staff wouldn’t mix so much. They patrolled the corridors, looking for some “mischief” to correct. “You can’t sleep in here” they would say to Mr Man, as he sat with his head in his hands in the quiet room, fully awake, although drugged to the eyeballs.

Of course, I didn’t see all these things immediately, but I was fully aware that the atmosphere was just different somehow. I couldn’t put my finger on it. It was just… wrong.


It was the morning of Mr Mans first team meeting in this hospital. On the other ward Mr Man and I would go in to see the team together, and I had once gone in to see the team alone. But here, when I asked to speak to the doctor first the nurse seemed shocked, as if nothing like it had ever happened before. She made such a fuss that you’d think I had just asked for the doctors head on a plate (which, in hindsight, I wish I had). She didn’t seem to know what to do. She asked Mr Man, who obviously agreed (bearing in mind I made my request in front of him and he had made no objection), and then she scurried off to ask the doctor. She came back, and I was granted an audience with the king doctor, although it was most unusual.

I entered the room. It was much bigger than the one on the other ward. There were no armchairs or sofas, just upright chairs. The royal court sat in a large circle, and opposite the empty seat sat the king, on his throne. I walked in nervously and sat down. I was overwhelmed by the number of people present, all staring at me. On the other ward there would have been maybe 3 other people, as well as the doctor. But here, it seemed as if the whole ward staff were present. How did mentally unwell people cope with this? I thought. The ward manager, to my left, introduced himself and then one by one he introduced the rest of the team to me. I managed a faint smile and a nod of the head but their faces and names didn’t register; I had something of the utmost importance to tell the doctor, and I was keen to begin.

“I wanted to see you because Mr Man has told me something that I know he won’t tell you” I began. “He told me last week that he thinks people are watching him all the time and that there are camera’s everywhere, and he’s admitted that he hears voices as well”

My statement was met with silence. Didn't they hear what I had just said? The doctor flicked through Mr Mans notes and finally said: “When did Mr Man first start seeing Dr. Kay?”

It wasn’t the response I was expecting. I was thrown “Er… I don’t remember” Why doesn’t he just check the notes? I thought.

I babbled on about Mr Man not telling anyone because the voices have told him that they will hurt me if he does. There was still no response.

“When did Mr Man first start taking Olanzapine?” he said.
“I don’t know” I replied. Why wasn’t he acknowledging anything I said? Was he even listening?

“What dose was he taking?”
“I don’t remember”
“When did he stop taking it?”
“I don’t know”

My mind was in turmoil, I had just discovered that my husband could be suffering from Schizophrenia and I wanted… no, I needed some assurance that my concerns were being taken seriously. Instead I was bombarded with questions which would be answered if only the doctor would read the notes. Of course, at the time I didn’t even know that Olanzapine was an antipsychotic drug. I wouldn’t even have suspected that he would be given such a medication, as he had never admitted to hearing voices before. The matter seemed urgent to me but no one else, and no one considered how the knowledge had made me feel.

The interrogation continued for a while and then finally, with a nod of the head I was dismissed. I left the room feeling that I hadn’t been heard. It wouldn’t be the last time. Not writing notes, not reading notes, and not listening to either Mr Man or myself would become a common problem over the following months.

I didn’t understand why I wasn’t allowed to be present to support Mr Man when he met with the team. He hadn’t been to a team meeting on his own before, and after my own experience I didn’t hold out much hope of them being compassionate towards him. I sat in the garden, on the same bench Mr Man and I had sat on when he first told me about the cameras. It was a beautiful sunny day, as it often was during those emotionally dark days. As I cried I wondered what would happen – to him, to us – there were so many thoughts and feelings but there are so little words to express them.

And then a little bird came and landed beside me on the bench. It didn’t seem afraid of me at all. It was as if it was sent to comfort me. “Have no fear, you are worth more than many sparrows” I thought. And I tried to take courage.

Dread

Hi. Yes, it's me, the sporadic blogger. I just felt like posting a little update today, partly to get things off my chest I suppose.

Things have been, well, y'know, the same. Or worse. I'm not sure. Better actually, because I have been avoiding life like never before. Less anxiety because I haven't been shopping or done any cooking or cleaning or... anything. The cupboards are empty. Mr Man is starving. We've just been living off take-aways. But the counsellor said it's ok to avoid things that cause me anxiety, so that's ok. (?)

Well, it did help with my anxiety for a while, but now I realise we have things to pay and I have wasted all our money, so long term it's kind of made things worse. Now I have to go back to managing the anxiety of shopping and cooking with the added anxiety of worrying about money.

Some readers suggested ordering shopping online and having it delivered, which was a very good suggestion and I did try, but I had to register and fill in an online form which kind of brought on a panic attack and I haven't tried again since.

I feel like a failure. All I can do is apologise to Mr Man over and over again, but it doesn't seem to mean anything. "I'm sorry" doesn't cover it. It doesn't do my feelings justice.


I have an appointment with the counsellor again on Friday and I'm absolutely dreading it. I don't want to go because I'm still so upset by the things she said last time. I don't trust her anymore. She made assumptions about me without even giving me the chance to speak. I expect she thinks I'm trying to blame all my problems on the way Mr Man was treated in hospital in 2002, which I'm not, but she wouldn't know that because she didn't let me explain. It certainly was a major contributor to the anxiety that I was already suffering, but as you readers and other carers will understand, struggling to keep Mr Man safe was traumatic enough. They can't comprehend that. Despite all their training and qualifications, none of them truly know what it's like to try to keep the person you love safe, when they are genuinely suicidal for so many months, or even years. None of them know how hard it is to watch the person you love give up on life and lay in bed in their own urine, refusing to get up, refusing to eat and refusing to drink. None of them know what it's like when the person you love is persecuted every day by frightening hallucinations and there is nothing you can do to protect them from their own mind. And none of them know how it feels to place the person you love into the care of others, only to realise that you have placed them in even more danger. None of them understand these things.

I know, I should have recovered from all of this right? Mr Man isn't that poorly any more is he? So why haven't I been able to move on? I don't know the answer to that. And I don't know why it has rendered me useless in every area of life.


Other updates

Mr Man has been sporadic too. His mind becomes over active and he doesn't sleep for days, and then he burns himself out and sleeps forever. He swings from being a great entrepreneur to being an online gamer who doesn't feel well enough to handle life's responsibilities. He's been very understanding but unable to help me in practical ways. He still starves if I don't cook, and I still have to remind him several times a day to take his medication before he actually takes it.

Over Sensitive

Y'know, these days I have to be really careful about what I read or even what I watch on TV. I know some would say I am over sensitive, but reading or watching the wrong thing can (and does) send my mood plummeting. I'm not always sure what "the wrong thing" is to be honest. Injustice of any kind, I think. Watching a crime drama about a doctor who causes someones death and then covers it up and gets away with it is definitely "the wrong thing" for me.

When Mr Man was in hospital for the third time in 2003 one of the patients died. It was widely believed that the doctor had assessed the patient and decided that she was well enough to go home with her husband for the weekend, but then she killed herself. An easy mistake. If someone is determined enough (and pretty good at acting) it is possible that they could fool the doctor into believing that they are starting to make a recovery. It was a tragedy.

But, what actually happened was that the patient was on "level 3 obs" as they called it - she was supposed to have been checked every 15 minutes to make sure she was safe. She wasn't on home leave at all. During the inquest it was explained that the hospital was regularly under-staffed, making such observations difficult. The ward had two floors, with numerous exit points, which increased the difficulty further.

Actually, the truth is that at night the patients weren't allowed downstairs, and in the day the patients weren't allowed upstairs and their rooms were locked. It was impossible to leave the ward from the first floor anyway - all of the windows had bars across them on the outside, preventing them from opening more than a few inches. On the ground floor there were only two exit points, one of which was directly next to the office. In fact you couldn't walk in or out of the exit without being seen by whomever was in the office. So how did this patient manage to leave the ward?

It was nearly four years before the truth was finally established, that the patient's notes were falsified and recorded that she had been checked on - a full half hour after CCTV footage showed her committing suicide elsewhere in the town. She was missing for four hours before anyone noticed. The notes were falsified by the nurse whom I had witnessed on numerous occasions playing computer games in the office. Obviously the nurses were very busy because they were so under-staffed.

It makes me wonder what we would have found out if the case of Mr Man's attempted suicide on the ward a year earlier was fully investigated. Of course, it never was investigated because... well, he didn't die did he? So that made everything ok. That's what I was continually told anyway. I did meet with the Medical Director, to discuss this and other issues, and I was assured that Mr Man had been checked every 15 minutes, so the staff had done all they could to prevent it - it was in his notes so it must be true.

Sectioned

September 2003

If you have been following our story in order this is quite a jump forward in time, but the subject of having a loved one detained under a section of the Mental Health Act is one that has been discussed recently, but not in depth. This was our experience.


It was a Sunday morning. I awoke earlier than usual, not having slept very well after being woken during the night by Mr Man repeatedly banging his head on the pillow in an attempt to get the voices to stop. He had been discharged from hospital five months earlier, but the medication he was taking seemed to have less and less effect on his symptoms as time went on. It had been decided some months previously that Mr Man would be admitted into hospital to start treatment of Clozaril, but he was still on the waiting list for “the Clozaril bed”.

Despite a growing history of self harm, suicide attempts, and psychosis, Mr Man still had no Care Plan in place, no CPN, and no Care Co-ordinator. We “coped” alone. Earlier that week the strain had become too much for me and I had resorted to alcohol, just to experience one night without the worry and the emotional pain of watching Mr Man suffer. Not being a regular drinker, when I wanted to repeat the experience two days later I realised I wasn’t coping.

Without a support system in place, when I realised how bad the voices were getting I didn’t know what else to do except call the usual “out of hours” Doctors surgery. I explained that Mr Man was waiting to be admitted for treatment with Clozaril, but that in the mean time his condition was deteriorating quite badly. The Doctor agreed that I should bring him in to be seen.

The problem was that although Mr Man had previously agreed to go into hospital to start his treatment of Clozaril, whilst waiting to be admitted his symptoms had deteriorated to the point that now he was confused as to whether he was really ill or not. Mr Man refused to get up. To begin with I thought this was merely part of the ongoing problem I had with getting Mr Man to do anything, because of the negative symptoms of his Schizophrenia. I called the surgery to explain. I was sure that the Doctor wouldn’t understand and would think I was wasting his time; after all, that was the response I was used to from Psychiatrists and Psychiatric Nurses, so I didn’t expect much from a GP, but he suggested I try again. Mr Man still wouldn’t get up, but this time it became clear to me that it was because he didn’t want to be seen by a Doctor, rather than just not wanting to get up. This worried me even more because I knew from experience that once Mr Man had lost the insight that he was ill his delusions would take hold and there would be no reasoning with him. I called the surgery again to cancel the appointment. I was embarrassed that I had called the surgery for an appointment and now Mr Man was refusing to go, and I felt so helpless. The Doctor must have discerned the anxiety in my voice and he threw me a line.

“Are you saying he is refusing to be seen by a Doctor?” Something in the tone of his voice told me what he was thinking.
“Yes” I replied.
“Are you concerned that he could be a danger to himself?” he asked.
“Yes” I replied, and I went on to explain that that was why I was so worried; because the voices were worsening and they often tell him to harm himself.

I was so relieved and so grateful when he said he would arrange a home visit for Mr Man to be assessed. Mr Man was a bit sulky with me about that, but once the Doctor arrived he agreed to go down stairs to be seen by him. After discussing his symptoms with him, the Doctor asked Mr Man if he would go into hospital voluntarily, but he refused. The Doctor asked me if I agreed that Mr Man needed to go into hospital, and I did, so arrangements were made for a Psychiatrist and a Social Worker to attend.

Mr Mans mother visited us that day, which had been pre-arranged earlier in the week. She was obviously confused by the presence of strangers in our home, so I took her into the kitchen and explained what was happening. She was overcome with emotion at the thought of her son being taken into hospital against his will, but for me – as someone who had needed to hide knives and blades, and constantly reassure Mr Man that he doesn’t have to slice himself open when the voices tell him to, and that no harm will come to him or me for not doing it – having him “sectioned” seemed far less traumatic than the thought of his condition deteriorating further.

The lesser of two evils?

"Sectioned Lady" by Philippa King

The whole process was very drawn out with much waiting around, firstly for the appropriate people to attend and then for an ambulance to take Mr Man to the hospital, which wasn’t really necessary but apparently required by law. From the time I called the surgery to the time Mr Man was finally admitted took about 12 hours. During that time Mr Man was anxious but quiet. He didn’t argue, and he didn’t struggle. He was resolute that he didn’t want to go to hospital, but he seemed to have resigned himself to the fact that he would have to. The Social Worker was very chatty and friendly, and even managed to get a smile out of Mr Man a couple of times. There was no drama, and apart from that edgy feeling of expectation when you’re waiting for something to happen, the day was quite boring. I was relieved when the day was over and Mr Man was safely on the ward, although leaving him on the ward was never easy for me. I could never quite decide which was the lesser of the two evils.

I’m not sure if I had Mr Man admitted for his own safety or my own sanity, but it prevented him from having to wait many more months before starting his treatment of Clozaril – the first medication to really make a marked improvement on his symptoms.

Over protective

End September 2002 - beginning October 2002


As previously mentioned, the voices have worsened again for Mr Man recently, telling him to cut himself. So far he has managed to resist carrying out their demands, but it’s funny how the fear that he will follow through never completely leaves me.

Most of the knives in our house aren’t very sharp but I do own a craft knife from years ago when I went through a phase of card making, and I keep this well hidden. I needed to use the knife recently and I had to wrack my brain to try to remember where I had hidden it. Mr Man walked in on me as I retrieved it, and it made me jump like a naughty school girl trying to hide a secret. It was still stained with Mr Man’s dried blood from 2002. It was the only time he had ever cut himself at home, and yet I still fear it could happen again.

Mr Man had been in hospital for about 4 months. He was still an inpatient at the Psychiatric hospital but he was at home with me for the evening on home leave. I’ve discussed previously why it was difficult for me to have Mr Man at home on home leave, but equally as difficult to refuse.* Things were really starting to come to a head; I could see that Mr Man’s condition was deteriorating, but the only member of staff who recognised this fact was his primary nurse, who unfortunately didn’t seem to be at work that often, or was working nights. The other staff, including the consultant, was under the illusion that Mr Man wasn’t suffering from psychosis at all and never had, and that he wasn’t a risk to himself either, despite recently having been through several assessments which indicated otherwise.*

Mr Man had cut his arm whilst on the ward two weeks earlier, with razor blades. The poor lad that found him had only just been moved from the Psychiatric Intensive Care Unit to the Acute ward, and had to be taken back to PICU because of the shock. Mr Man was assessed and found to be suffering high levels of psychosis, and was a high suicide risk.* He was placed on level 3 observations, which meant he was checked every 15 minutes – as if it takes longer than 15 minutes to seriously harm yourself. These observations never lasted long anyway; maybe a day or two, and the following week Mr Man’s consultant suggested that Mr Man go home over night for some leave. This caused a huge row between the consultant and Mr Man’s primary nurse, who was the one that carried out the assessments and seemed to be the only person who took Mr Man’s symptoms seriously; not to mention my own ability to cope. She overrode the consultant’s decision, and told Mr Man that for the time being he was only to have a couple of hours home leave at a time, and no overnight stays.*

During those hours I followed him everywhere. I tried not to make it obvious, but whenever he needed the toilet I would find something that I needed to do upstairs. I told the staff I was doing this, in an attempt to get them to understand how worried I was about Mr Man's safety. They told me I was being over protective and that I needed to allow Mr Man to take responsibility for himself. They said I was "hindering his recovery". So on Tuesday 1st October when Mr Man was at home for a couple of hours, I followed their advice and allowed him to go to the toilet alone. I knew it was wrong. It felt wrong. There was something in his face that told me it was wrong. I patiently waited down stairs. When I heard the floorboards creaking I knew he wasn’t sitting on the toilet, so I went upstairs. And that’s when I found him.

He had cut the inside of his forearm lengthways with the craft knife, and was prodding around inside with his fingers. “What are you doing?” I shrieked, as I took the knife out of his hand. He was clearly very distressed. “Please don’t be upset with me, I had to do it. They told me I had to get the aerial out”. It was difficult for me to be a calming influence when inwardly I was panicking. I know now from reading medical blogs that I probably didn’t need to panic quite so much as there was no arterial spurt, but at the time the cuts looked deep, and finding him in such a state was traumatic.

"Cut Out" by Philippa King

I didn’t know what else to do except take him back to the ward. He really didn’t want to go, but I managed to persuade him by explaining that I didn’t know how to dress his wounds and that the nurses would know what to do. I wrapped his arm in a clean tea towel and we made our way back to the ward. The cuts were worse than last time, but he wasn’t monitored under any level of observation this time.

The next two weeks were probably the worst two weeks for both of us, as Mr Man’s symptoms continued to deteriorate, and the staff continued to ignore it, but I will write about that another time.

So when Mr Man says that the voices are telling him to cut himself, I know that the danger is real, although I also know that Mr Man is learning to cope better and resist their demands. I don’t follow him around like I used to, but I still make sure that temptation is hidden out of his way. I don’t hide every knife in the house, and if he really wanted to he could find a way to cut himself, such as with razor blades as he has before. But when just a momentary lapse in his resolve could result in such traumatic circumstances I don’t see the point in unnecessarily leaving very sharp knives in view. I don’t think that is being over protective, do you?


*These points have been discussed previously in the post "Patient rights verses patient safety"

Questions From Readers

In January I received some questions from a reader, prompted by a post I had written in November 2006. The post was entitled “Blip”, and at that time Mr Man’s medication had been changed, causing a temporary fluctuation in his symptoms. This had led to him believing that many of our friends were spies, and that even his Psychiatrist was “in on it”. You can read the full post here. Below is a portion of my correspondence with the reader, for the benefit of those who may be in a similar situation.

"How do you handle it when Mr Man says things like “she’s in on it”? And how do you handle living with someone who always believes that people are spies? I have fears about when my hubby comes home – how am I going to feel with him always thinking that people are after him? I have a hard time when he thinks I am against him. I don't know how I will react if he is going to say stuff like that throughout the years."

I understand your fears at present. When I first realised that Mr Man was suffering from Schizophrenia I didn't think he would be well ever again. But in time, and usually with medication, things do get better. It can seem slow at times, but then other times you look back and you suddenly realise how far he has come. The key is not to compare to what he was like when he was well, but to compare to what he was like at his worst.

At the time of writing this “blip” post, I didn't actually challenge Mr Mans beliefs too strongly. I think I said something like "Do you remember telling me that you realise these beliefs are part of an illness? When your meds get into your system you won't feel like this anymore" But he didn't remember it, and it seemed to confuse him, so I chose not to challenge it anymore, only reassure him and distract him from those thoughts as much as I could. Dwelling on them definitely doesn't help.

I was aware that I would have to keep a closer eye on him and I made sure he took his medication. Apart from that I tried to carry on as normal. It really did turn out to be just a blip and he didn't need to see his doctor after all. If the symptoms had persisted or had got much worse I would obviously have had to contact his doctor against his will.

Mr Man isn't like this all the time though. Once a person is relatively stable on medication the fluctuations in symptoms aren't usually severe. Also, you do learn to adjust and accept certain things in time.

"His social worker said that if I took over his care, not only will I be the wife but I will have to be the one responsible for him taking his medication, and if he doesn't then I will be the one forcing him into the hospital. So it could strain our marriage. Do you have any experience with this?"

Yes, I have had to make sure that Mr Man takes his medication, and I have also had to have him detained under a section of the Mental Health Act before. Even now, I get Mr Mans medication ready for him, but that's mostly because he would probably forget to take them otherwise! I don't usually have to watch him take them these days, but if he becomes unwell, like in this "blip" post, then I have to watch him take them to make sure he has had them. It's when he starts to doubt that he is ill that he is likely to skip medication, but most of the time he understands that he is ill and needs the tablets. They call this "insight".

We have had problems with this in the past, but communication was the key for us. I always tried to give Mr Man lots of reassurance that I loved him. I knew he didn't believe that he needed the medication but I had to ask him to trust me and I would try to reassure him that I would never make him take anything that would harm him. At times he only took the tablets for me, but at least he took them.

"Trust Me" by Philippa King

It was painful sometimes when I sensed that he was suspicious of me, but I had to remind myself that it was temporary and that as soon as he started to improve he would understand.

For a while it wasn't uncommon for him to ask what each tablet was called and what it was for. Understanding his fear helped me to be patient with him and explain about each medication time and time again. He would especially ask these questions if the chemist had used a different manufacturer that month and the packaging was different or the tablet was a different colour or shape. They really should think of these things shouldn't they?

The day he was admitted under a section of the Mental Health Act was a strange day. Although he had refused to go to the Doctors with me, when the Doctor came to our home he didn't become argumentative at all. He refused to go into hospital voluntarily, but he seemed to just accept the situation when they enforced the section. He didn't seem angry at me either. This was his third admission, and each hospital stay had been a lengthy one. I suppose he knew by that point that I was going to support him as much as I could, just as I had done on both previous occasions. It's different for everyone though.

Hopefully it will never come to that point with you and your husband. It really depends on how much insight he manages to gain through his medication. One thing I would say though (and I'm not suggesting that you would do this) is never lie about anything, even if you think it will protect him. I have always been completely honest with Mr Man about his medication and everything. When our home was broken into he was still in hospital. It would have been easier to not tell him about it, as he thought the burglars were spies, but I knew if I didn't tell him he would lose trust in me when he eventually found out. Maintaining trust is vital.

The Truth Revealed

Continued from "The First Three Weeks"
End of June 2002

It was a Thursday. A bed had become available for Mr Man on the Acute ward in the Psychiatric hospital. The decision was made to move him from one hospital to the other during the afternoon and a member of staff took him in a taxi. I wasn’t allowed to visit him until the evening during the usual visiting hours. I know this may seem reasonable to most, but for the first time I felt completely excluded from Mr Mans care.

It wasn’t just my own feelings I was concerned about though; Mr Man had relied on my support through every step – we had been inseparable for months leading up to his admission. I had been with Mr Man at every appointment; every team meeting; and I had been with him during the whole admission process when he was first admitted. Now suddenly he was being moved to an unfamiliar building, with different patients, different staff, and different rules, and he had no one for support. He was alone. I was angry about this; an emotion I became very familiar with over the following months. I felt like we were being kept apart like naughty school children.

At least because this was a psychiatric hospital with no need for fancy electrical equipment Mr Man and the other patients were allowed to carry mobile phones, so we were able to keep in regular contact. I felt more at ease knowing that at any time of the day or night Mr Man could ring me if he felt he needed to.

I went to the hospital that evening to visit him. “Visitors please report to the office” read the sign on the door. I didn’t have to do this at the other hospital as most of the time the entrance to the ward was locked and a member of staff had to let you in. Despite the inconvenience of this to the members of staff there they still managed to greet the visitors with a smile.

I walked in and knocked on the office door. A stony faced woman swung the door open and stood looking at me without a word, waiting for an explanation for my being there. I was a little taken aback by this cold greeting. Looking back I can see now that the staff were so disinterested in the patients that they hardly knew who was a patient and who was a visitor, and so treated everyone with the same level of contempt.

I was led to the garden where Mr Man was sitting on a bench, nervously rocking backwards and forwards. It was a beautiful sunny day. I cuddled up to him and we held hands, hardly knowing what to say to each other. This was a very stressful day for Mr Man; not only had he been moved from one hospital to another and denied the support of his wife, but also I was leaving that evening to go to the convention city for three nights. I would have felt guilty for leaving him at any time, but after such an unsettling day I felt worse. But it was “doctors orders” so to speak; after realising I had been on suicide watch for many months she insisted that I needed a break away. The hotel was booked, and my room mate was now depending on me for transport.

It was then that he told me.

“They’re watching me all the time. There are cameras’ everywhere”

In that moment I knew he was suffering from something more than severe depression, but I had no idea what; I just knew it was serious. He was so scared; he really believed what he was saying was true. I didn’t know what to say; I had never dealt with anything like this before in my life, but somehow I felt it was wrong to just dismiss his beliefs, brushing his feelings aside, and to tell him it was untrue. On the other hand I couldn’t confirm it either.

“How long have you felt like this for?” I eventually asked him.

He had felt that way for years but had felt unable to tell me. I left that evening feeling completely shell shocked. I didn’t know what I felt. I was numb. I was confused. Should I really be leaving him?

"There Are Cameras Everywhere" by Philippa King

I drove to Coventry city, chatting with my companion as I drove, but all the while with my conversation with Mr Man in the back of my mind. How we ever got there alive I’ll never know. I negotiated the ring road with only two months of qualified driving experience and my head still spinning from the bomb shell he had dropped on me before I left.

I had only taken my test because I knew that it was a possibility that Mr Man could be admitted into hospital at some point. I didn’t have time to mess about; I booked my test and then rang the driving instructor and told him I had 6 weeks until my test. He was brilliant and thankfully I passed first time. About 5 weeks after I had passed Mr Man was admitted into hospital. I don’t know how I could have supported him and visited him every day without being able to drive.

My companion and I met up with a couple of acquaintances once we had reached the hotel. The four of us ate together for the next three days but I had little to say. My conversation with Mr Man just went round and round in my mind. My companions were of an older generation and didn’t really understand mental health issues, but after losing three husbands to ill health my room mate was sympathetic to the strain of having a husband in hospital, especially at such a “young age” as she put it. It was difficult not having anyone to discuss my fears with and knowing that no one could really understand what Mr Man and I were going through though.

At the convention on the Saturday I bumped into an old friend who had previously suffered from a nervous breakdown after her husband had left, and had spent some time in a psychiatric ward herself. She asked me how Mr Man was doing and the truth poured out from me as I broke down in tears for the first time. At last – someone I could talk to who would really understand. She said to me “You must watch the film ‘A Beautiful Mind’. It’s all about a man with Schizophrenia”. I didn’t understand what she was trying to say to me, but I made a mental note of the film; her film choices were usually good.

I was exhausted when I returned to my home town on Sunday evening, but I couldn’t wait to see Mr Man again. I don’t remember much of my visit, only that the atmosphere on the ward didn’t ever feel “right”, but I couldn’t put my finger on the reason why. At the time I tried to put my uneasiness down to the people and surroundings being unfamiliar to me.

On the Monday my hairdresser friend came to my house to cut my hair. She also asked how Mr Man was and I told her what he had said about being watched all the time. “Do you think he has Schizophrenia?” she asked. She was the second person to mention this illness to me. I needed to find out what it was.

I did an internet search and found that there were four main symptoms* of Schizophrenia. They were (in their most simplistic form):

• Delusional thoughts. Commonly thoughts of being persecuted or being watched. This had been confirmed by Mr Man just four days earlier.
• A flattening effect. Lack of emotional expression, including facial expressions, tone of voice, and eye contact. This I had witnessed myself in the months leading up to his admission.
• Negative symptoms. Being withdrawn and lacking motivation to even care for ones own physical needs. Again, something I had witnessed during the previous months.
• Hallucinations. Most commonly, hearing voices. This was the only box I couldn’t tick; I didn’t know whether he was hearing voices or not.

I knew I had to ask him.

When I visited Mr Man that evening we sat in the “quiet room” together. He looked around the room nervously. The smoke detector was a camera; the plane flying overhead was watching too. I had never seen him looking so frightened and anxious.

“Do you hear voices?” I asked him softly as I held his hand. He nodded.

I tried not to ever confirm or deny their existence; I only asked questions to help me to understand what he was experiencing. Bit by bit the whole frightening truth came out. He didn’t tell me about the voices before because he was scared; they told him not to tell or they would hurt me. They used to help him write computer programs but now they were trying to steal his ideas from him. They were sending beams to steal his thoughts, and projecting holograms which spoke to him.

"Thought Theft" by Philippa King

I knew then. I knew. But the “educated ones” weren’t as easily convinced.


*Although this is what I had read at the time, Schizophrenia is a complex condition and should be properly diagnosed by a person qualified to do so. More information on symptoms can be found here.

Next post: Dark Days

The First Three Weeks

Continued from “First Hospital Admission”
May 2002 – June 2002

There was nothing major to report during the first three weeks of Mr Mans first hospital stay. No one had any idea what Mr Man was experiencing and it was thought that he was suffering from severe depression. Mr Man did everything that he was asked to do; behaving as the model patient and joining in with all of the ward activities, but during the limited time that I spent with him I could see that really nothing had changed. My husband still wasn’t there, and it seemed that everything he did in the company of others was an act.

"Not as it Seems"

I cannot bear the silence
or the poorly held disguise
or all of this pretending
or the distance in your eyes

by Philippa King

Visiting times produced extremely mixed emotions for me; I missed Mr Man so much and I couldn’t wait to see him, but at the same time I hated seeing him so down and withdrawn. While I was there I couldn’t wait to leave, and yet every time I left it tore me apart to leave him behind. I just wanted everything to be back to normal again.

The stress of the whole situation was starting to take its toll on me; I had started taking antidepressants in the April, and my anxiety levels were constantly high. I was becoming increasingly forgetful; leaving shopping bags in shops, leaving my handbag in café’s, and leaving the car or house doors unlocked. I started going through a verbal ritual every time I left the house: “I have my purse, keys and phone. The windows are shut, I’ve locked the door. I have my purse, keys and phone. The windows are shut, I’ve locked the door” and I would repeat this to myself again and again as I drove away. Often I would doubt myself and I would have to turn around to make sure I had shut the house windows, or I would panic that I didn’t have my keys and then I would realise that if I didn’t have them I wouldn’t be able to drive the car! I was always able to produce a smile though, and not many people really knew what I was going through.

During this time the use of Monoamine Oxidase Inhibitors (MAOI’s) was introduced to Mr Mans treatment, which meant having to avoid certain foods such as cheese and other foods which contained Tyramine*. Mr Man wasn’t very happy about this; his diet was already restricted as it was believed that he was suffering from Coeliac disease at the time. Cheese is one of his favourite foods, and also he was unable to eat his favourite crisps because they contained cheese flavouring. The hospital was very good at catering for his dietary requirements though, and we were told that four weeks would be long enough to know whether it would be worth continuing this treatment or not.

Before his admission into hospital, I had always accompanied Mr Man on his appointments to see his Psychiatrist, and being in hospital proved to be no different. I was told by a nurse what day and time Mr Mans appointment would be, and was asked in the presence of Mr Man if I would be attending. We both agreed that I would.

They were very different to Mr Mans usual appointments, which were held in a small “office” type room at the local Community Mental Health Centre, and included only the Psychiatrist, Mr Man and myself. On the ward the “team meetings” as they were called, were held in a larger room, with armchairs and sofa’s, albeit scruffy ones. Several members of the ward “team” would be present, including nurses and Occupational Therapists. The atmosphere was an informal one with a strong sense of team work between the staff members present. In fact that sense of team work was so strong that to begin with I had no idea which one was the consultant. They would openly discuss treatment options between themselves, including various types of therapies, in front of Mr Man and I. They always asked how we felt about the treatments that were selected, and they made sure that we fully understood what each treatment entailed, providing information leaflets and often even suggesting that I do my own research on the internet, particularly when the MAOI’s were introduced and when the possibility of ECT** was discussed.

I have to say, the first 3 weeks of Mr Mans first admission was a very positive experience. The staff showed respect for the patients, and treated them the same as anyone else. Mr Man bonded with a couple of staff members there, and I really felt that if he could be “mended” it would be there.

Of course, this was a Psychiatric ward in a General Hospital, meant for short term stays. After a few weeks patients were usually sent home or moved on to the Psychiatric Hospital. The night before the team meetings we were approached by a nurse and told the “good news” that Mr Man would be discharged in the morning. Mr Man was obviously relieved, but I was very concerned; I knew nothing had changed.

That night as I drove out of the hospital grounds, distracted by my thoughts, I crashed into a plastic bollard. I had no idea what to do, but obviously I had to move it out of the road before it caused an accident. After moving it to the side of the road I parked my car again and then I went back for the bollard and carried it to the Hospital entrance. Just as I approached the main entrance one of the nurses from the Psychiatric ward was on his way out. As he smiled, curious to know what I was carrying, I burst into tears. I’m guessing he must have been used to emotional relatives as first admissions must be a traumatic time for any family, and he gently probed for the full explanation of my distress.

I explained to him how suicidal Mr Man had been and that I knew that nothing had changed. I explained how his involvement in ward activities was all an act, and that it was no indication of recovery. We must have talked in the car park for at least an hour, and by this time it was getting dark. He listened intently, asked questions, and took my concerns seriously.

The next day was the team meeting. The team actually asked to speak to me separately before Mr Man joined us, due to the report given by the nurse I had spoken to the night before. The Psychiatrist explained that she didn’t realise I had been on “suicide watch” for so long. It was obvious by what I had told them that Mr Man still had a long way to go in his recovery, but since the ward was for short stays only it had been decided that he would be moved on to the Psychiatric Hospital. I explained that I was supposed to be going away in a couple of days to one of our religious conventions, and I was strongly advised to still go. The Psychiatrist felt that I needed the break and the encouragement. Reluctantly I agreed.



*The combination of MAOI’s and food containing Tyramine can be dangerous as it can cause the persons blood pressure to rise suddenly.

**Electroconvulsive Therapy.

Next: "The Truth Revealed"

Untitled

I have shed a few tears tonight.

I have such a long way to go in explaining our experiences of when Mr Man was first admitted into hospital. After sharing just a few scant details on Mental Nurse of what Mr Man went through my memories came flooding back to me, and I have to ask myself if I will ever be ready to share our full story or if it will always be too painful for me to revisit.

As the tears rolled down my face I held on to Mr Man and whispered “I’m sorry”.

I’m sorry that I wasn’t strong enough to care for him at home. I’m sorry that I didn’t understand the system enough to know how to stop what was happening. I’m sorry that I didn’t take him away from there. I’m sorry that I didn’t demand that he be treated somewhere else. I’m sorry that I was too exhausted emotionally to take my complaint further after it had been swept under the carpet.

I am so sorry.

If I could give just one piece of advice it would be this: if you have any doubts at all about how your loved one is being treated, seek the support of an advocacy service and ask for a second opinion immediately.

I left it so damn late before seeking a second opinion.

The reason why I recommend contacting an advocacy service is because once I finally requested a second opinion, the consultant made no effort to arrange it for 4 weeks although another consultant only worked next door. This man continually played games with me; I felt so powerless against him and had no idea what to do. The next time I saw the consultant a lady from an advocacy service came with me and she asked about the second opinion. I don’t know what “special powers” these advocates hold, but she got results. An appointment was made for Mr Man to see the other consultant that same afternoon. He was prescribed anti-psychotic medication and it was the beginning of his recovery.

Coup de grâce

2002

We lay in bed talking last night. Mr Man told me that the last time he met with his Dad he had asked him about his illness.
“What did you say?” I asked.
“I told him about the numbers thing. He asked me if the voices ever give me the lottery numbers!”
I laughed.
“I’m not really sure how much he knows about my illness” he continued.
“You could always direct him towards my blog, although I’m not sure how he will feel when he reads that I wanted to kill you!” I joked.
Then the conversation turned serious.

I never wanted to be without Mr Man, I just couldn’t bear to watch him suffer any more. He had already been in hospital for 6 months, and had come home no better than when he went in.

Recalling how I felt I started to cry.

I didn’t know how I could help him. I had let him go into hospital in good faith, thinking that the staff would care for him and make him well. In reality he had suffered more in their hands than at home. They called him a liar, mocked him, humiliated him, criticised him, cornered him and argued with him, obviously aggravating his already debilitating symptoms. The consultant was sadistic, and deliberately caused him physical suffering by keeping him on medication that caused him pain, but offered no relief of the actual symptoms. He was visibly amused when I tried to challenge him.

So many times I wanted to take him away from that place, but where to? What did I have to offer him that would make him well?

After everything he had been through I was relieved to have him home again, even though it meant 24 hour care. My friends tried to tell me that it was too much for me, but I wanted to do it. I showered him in love more than ever before, trying to make up for the suffering he had endured at the hands of the hospital staff. I felt I had failed him by not being able to protect him from them. My complaint went nowhere; the people at the top don’t listen to us little people.

Mr Man had harmed himself more often on the ward than at home. The only time he harmed himself at home was when I listened to their advice, and allowed him to go to the toilet on his own. I seemed to understand his illness better than they did, and yet I had no idea how to relieve his suffering; I only knew how to show him love and keep him safe. But that wasn't enough.

He continued to suffer, and at that time I believed that he would never be well ever again. I felt selfish; I knew he wanted to be dead, but I was forcing him to face his waking nightmare with no prospect of relief. I wanted to end it for him.


I could never have imagined that I would now be lying in his arms and laughing about his symptoms with him. I’m so glad that I didn’t follow through.


Related posts: Questions from Readers

Questions from readers

I have recently been asked the following questions by an anonymous reader in the comments section:

“Why are you still married to [Mr Man]? What is it that keeps you going? Is it love, sympathy, duty… what? I am in a similar situation and I find myself harbouring thoughts of just letting go... please do share your views.”

It would be easy for me to just simply reply with: “It’s love, of course”, but I feel that the questions are deep and deserve serious and honest consideration.

I have touched on this subject previously in the post entitled “One Flesh”. I titled the post in this way because that is exactly how I feel – that as a married couple we have become one flesh. As such, whatever hurts Mr Man hurts me, and for me to consider leaving him would be like considering tearing off my limbs.

I never stopped loving the man I married, even though I didn’t know where he was anymore. As I mentioned in that previous post, I had to grieve the loss of my husband even though I was still with him, because the man I was left with didn’t resemble him at all. I had to cling to the belief that he was still in there somewhere and that somehow I would be with him again one day.

It is this belief that has kept me going, and slowly the man I love has resurfaced. I look at him now and think about what I would have missed out on if I had ended it all back then. I say “ended it all” rather than “leave him” because as I said, I never even considered leaving him as an option, but I considered ending the suffering for both of us. Although difficult to admit to, this again is something I hinted at in that previous post when I wrote: “I confess, I wanted to end the pain – for him, for me – but I have never wanted to leave him”. The only thing that held me back was that it might only have worked for one of us and that the surviving one would be left with even more heartache.

Later I reached the point where I felt that if he died maybe it would be easier for me to grieve for him and move on, rather than watch him continually suffer for the rest of his life. I would sit beside him on the edge of the bed while he slept and think about smothering him with a pillow and ending it for him, but I was worried that he would wake and not understand why I was doing it, and the thought of him believing for one second that I didn’t love him was unbearable. I am in no way recommending this as an option, but I want you to know that I understand the extent of your suffering which has lead to you “harbouring thoughts of just letting go”.

"Dark Thoughts" by Philippa King

There was a time when I couldn’t imagine ever being without Mr Man. I expect most newly married couples feel that way. I felt that without him my life would come to an end and have no meaning, and that I would never be able to move on and start a new life. I thought I would rather die than live without him. But the more suicidal Mr Man became the more my grieving took a new direction. Rather than just grieving the loss of his personality I was actually grieving the loss of his life, as I became truly convinced that he was going to die. I felt like I was married to a man with a terminal illness – I knew he was going to die I just wasn’t sure when, or that’s how I felt anyway. I found myself planning my future without him, which made me doubt my love for him and I felt incredibly guilty. This is why I thought your questions deserved honest consideration, because at one time I even wondered myself if it was love, sympathy, or duty that kept me by his side.

Obviously I have felt deep sympathy for Mr Man, watching him suffer in unimaginable ways. I have always believed, and still do, that mental illness is the worst kind of illness anyone could ever suffer from; after all, physically ill people can still be happy, but if you can’t be happy, what else is there? I can’t deny that duty must have also played a part somehow, but the main reason for staying with him was, and still is, love.

When he became less suicidal I found the adjustment quite difficult, as strange as that sounds. Although I loved him and obviously wanted to be with him, I found it difficult to believe that I wasn’t going to lose him, and to start planning a future with him rather than without him.

I am convinced that I am never going to meet anyone else like him in my life, and I don’t regret marrying him for a second. What we have been through together has in no way been easy, but we have gone through it together, and we now have a bond which is unbreakable.


Related posts: Coup de grace

First Hospital Admission

Continued from "One Flesh"
May 2002

Just lately there have been quite a few news articles and posts on other blogs relating to mental health issues which have inspired me to want to write my own views on the various topics. Of course that’s all very well but it takes me away from my original purpose of writing this blog; that is to relate our own experiences in coming to terms with living with Schizophrenia and in dealing with mental health services. The logical thing for me to do would be to continue writing “our story” and in so doing I will probably make my views on the other various topics obvious in time.

In the post entitled “One Flesh” I left our story at the point where Mr Man had become so suicidal that he really needed 24 hour care, which of course I couldn’t give, and so he was admitted into the psychiatric ward in our local general hospital.

It was a Friday, and I remember that it was sunny. We had been to see his Psychiatrist that afternoon as an emergency appointment after Mr Man had admitted to me the night before that he had thought about waiting until I was asleep before attempting suicide. The Psychiatrist asked Mr Man where and how he had planned to kill himself, and he gave clear and precise answers. This was enough to show her that he was serious about his intentions, and she immediately phoned the ward and had one of the emergency beds arranged for him.

It must have been about 6 pm as we loaded Mr Mans bags into the boot of the car. This was a move we had tried to avoid for so long and yet now although there was a feeling of uncertainty I also felt that a weight had been lifted from my shoulders. I’m not sure why, maybe because I felt he would be “looked after” and I wouldn’t have to fear for his safety anymore. Maybe because I thought this would be the start of a recovery for him. That feeling of relief was short lived though; walking away from the hospital that night was one of the hardest things I’ve ever had to do.

The admission took hours, literally. There were lots of forms and paper work for the staff to fill in and lots of waiting around for doctors and such like. The staff were very friendly though and I really appreciated the fact that they showed me around the ward that would be home to my husband for a while. His bed was in a bay with 5 others and coincidentally the man in the bed next to him was Darren, mentioned earlier, who Mr Man had worked with previously. We didn’t realise this at the time though, and it wasn’t long before Darren was moved on to the Psychiatric hospital at the other end of town.

Although everyone was very friendly it was still quite nerve wracking being shown around. Everything was new to us, neither of us knew what to expect, and the whole ward was full of people - strangers. These strangers would look at us as we entered the room, and it all felt very awkward. We were shown into the lounge where some people watched TV while others played board games, including one of the nurses. It wasn’t an atmosphere that we had experienced on a hospital ward before; it was very relaxed and it was immediately apparent that everyone knew each other very well. Although they were all very accepting we felt like outsiders, unfamiliar with even the concept of a mental health community.

There was no room for privacy anywhere. Mr Man must have felt this more than I can imagine but of course at this point I didn’t know that he felt that he was being watched all of the time. It must have been very hard for him to not even have any privacy when he went to bed at night, something I expect most of us take for granted. But of course privacy was the one thing he couldn’t afford to be given; privacy was dangerous for him.

It was late by the time I left the ward that night. As I looked back through the little window on the locked ward door I could see Mr Man sitting on the edge of his bed; his hands in his lap, looking down towards the floor, looking abandoned and lonely. I wanted to take him back home with me again. I wanted to hold him and protect him and make him feel safe and loved, instead I felt guilty of making him feel vulnerable and abandoned. It was a dreadful feeling. It was so hard to let go and trust others to keep him safe and yet I knew I couldn’t do it myself anymore. I drove home alone that night and went into the dark empty house. It was so quiet. I went straight to bed, alone, thinking of how alone Mr Man would also be feeling.

"First Admission" by Philippa King

For so long I had been used to barely leaving the house for fear of Mr Man harming himself without me there to protect him. Now suddenly there was nothing to stay home for. The house was so empty and quiet. It wasn’t a home anymore, only a house. I couldn’t bear to be there so each day I would get up and go out and stay out for as long as I could. I would do anything: window shop, visit friends or family, or just drink coffee on my own in a café. Most times I stayed out all day until it was time to go to bed. The rest of the house was hardly used and most of the time I ate out or bought ready made sandwiches to eat in the car on the way to the hospital. There were times when I felt that I really needed to be alone and yet the house was just too lonely. I suppose I didn’t really want to be alone, I just got tired of talking about the situation all the time with other people. I know people cared about Mr Mans progress, how I felt, and how I was coping, but I didn’t want to keep talking about it all the time. I wanted to talk about “normal” things. I needed a break from the reality of the situation. That sounds really selfish now; after all, what break was there for Mr Man? But these were the times when I would buy myself a microwave meal on the way home from the hospital and pick up a DVD from the video shop and just “switch off” for the evening. These times were the longest periods I spent in the house, but I spent them “somewhere else”, not wanting to think about the fact that I was alone, or why.

After 3 hospital admissions I can now say from experience that the first 3 weeks after admission and the first 3 weeks after discharge are always the worst - yes, even after discharge. Each time there is a complete change in routine and that can be so hard to get used to.

Back at the hospital Mr Man was having to get used to a new routine of his own. Whereas I was having to get used to being alone, Mr Man was having to get used to the constant company of strangers, which in itself brings a different kind of loneliness. He was used to me always being there for him, but now I could only visit for a few hours in the evening*. There were activities on the ward each day organised by the Occupational Therapists and he was encouraged to take part. This was a big change to hiding away in bed for 18 hours a day. I think most of the activities seemed tedious to him but he played along thinking that he would get into trouble for not trying to help himself if he didn’t. Also he thought that by doing as he was told he could be discharged sooner. The meals were good and he got to choose what he wanted from a menu the day before.

The ward was a mixed sex ward and the patients were quite varied – different ages, different races, different psychiatric problems – but they all had one thing in common: they all seemed to feel secure in the knowledge that everyone around them was just like them – broken in some way – and no one would judge them. There was a strong feeling of community and understanding between the patients, and the staff interacted very well with them. Often it was hard to tell who was the patient and who was the nurse as the nurses didn’t wear a uniform and there didn’t seem to be any air of superiority from them. They would sit and play board games with the patients, or chat and laugh with them.

There were a few patients who seemed “strange” but mostly they were all very “normal” and friendly – perhaps not what people would expect to find on a Psychiatric ward. Actually, I’m not sure what people expect to find on a Psychiatric ward. Most patients suffer some kind of depressive illness, and yet the atmosphere wasn’t depressing. People played CD’s, chatted, played pool and watched TV. The ones who obviously needed some time alone were left to be alone, and yet would occasionally receive an “are you ok mate?” from another patient. Together they seemed to have a strong community, but individually they were all suffering inside.



*Visiting times were different to the other wards in the hospital. There was a short visiting period at lunch time, and then from 6 pm – 10 pm in the evening.

Next: "The First Three Weeks"

Other therapeutic interventions

Tonight I am writing this as I accompany Mr Man at a table tennis match, which is one of his many “therapies” that he engages in. This is one that helps him to interact with other people in a setting where the focus is on a sport which he loves rather than on the actual interaction with others, which helps to ease the pressure in that area. He has found this particular activity very difficult in the past and still does sometimes, but looking back it’s clear to see that there is vast improvement.

We refer to last season (Sep ‘05 – April ‘06) as Mr Mans first season back in the game, but actually his first season back was the year before (Sep ‘04 – April ‘05). He had been discharged from hospital 9 months earlier and felt that the time was right to get back into the game after about a 7 year break. He didn’t cope very well though and a bad back saved him from the embarrassment of having to admit the real reason for dropping out very early in the season. Still, I was proud of him for trying; he knew it was going to be difficult but at least he still gave it a go. Dropping out in no way meant that he had failed; he just wasn't quite ready yet, but he was already planning to try again at the start of the next season.

I think the determining factor in the success of this “therapy” is the fact that it was completely his own decision to play, and then not to play. With any type of “therapy” that is considered a person with Schizophrenia has to be willing to give it a try otherwise the results will be counter productive for two reasons: Firstly, a person with Schizophrenia shouldn’t really be forced to do anything against their will that will take them beyond their comfort zone and that they might not cope with, as this may cause a relapse of symptoms, and there’s a fine line between being encouraging and being pushy. Obviously this means there is a need for trust between the Schizophrenia sufferer and the "carer", and knowledge of how much the person can cope with. I’m sure some people with Schizophrenia would have the tendency to play on their anxieties as a way of getting out of doing something they don’t want to do, but I don’t find this to be the case with Mr Man, and I know him well enough to know when to push and when not to.

The second reason is that obviously for any person, not just people with Schizophrenia, their attitude towards the therapy will directly affect whether they benefit from it or not. An activity will not help the person if they are unwilling or unable to enjoy the experience and thus benefit from its therapeutic properties. That’s fair enough; we all have our own ideas of what could be enjoyable or not, and what will benefit us or not, that’s what makes us all individuals.

Sometimes I think the approach used by health care professionals is wrong. When Mr Man was discharged from hospital in November 2002 after his first admission, he began Art Therapy. This involved him having to draw something – anything – of his choice while a Psychologist sat and analysed his behaviour and mannerisms whilst he drew. This didn’t work for Mr Man for several reasons: It’s not exactly a relaxed setting, or even a natural setting, for someone to engage in something creative; the setting itself inhibits creativity. Also I wouldn’t have said that Mr Man was really the ideal candidate for such a therapy; he didn’t believe he was ill or in need of therapy for a start, and he felt that this kind of thing was for people who had “issues” which he didn’t have. Forcing him to engage in this form of therapy merely reinforced the belief that he was being observed all the time. Encouraging a patient to engage in arts within a group so that they are not singled out would be much more beneficial. The setting would be more relaxed and the patient doesn’t need to know that he or she is being observed. This is how Art Therapy is conducted on the ward, although I suspect that it is used mainly to give the patients something to do. I’m not knocking it; Mr Man seemed to enjoy it while he was on the ward and if patients are finding a measure of joy then that has to be a good thing.

Of course at the time of the referral Mr Man was still in hospital and under the care of a Psychiatrist whose abilities and even his motives were somewhat questionable to say the least. He refused to accept that Mr Man was suffering from Psychosis and seemed determined to prove that it was either all an act (which begs the question why he kept Mr Man on the ward for nearly 6 months) or that his problems were due to his upbringing and his “unnatural” attachment to his mother, his sister, and even me his wife. More likely is that the Psychiatric Consultant in question was out of his depth, and out of a job, as his contract finished just a week before Mr Man was discharged. One nurse on the ward openly admitted to me that he felt the Psychiatrist had lost interest and didn’t care about the patients as he knew he would be leaving soon. Anyway, I digress, but it would be interesting to know if Mr Man would still have been referred to see a Psychologist for Art Therapy if he had been under the care of someone who knew or even cared about what he/she was doing. Mr Man only attended about 3 sessions with the Psychologist and then just refused to go to anymore, but no one has ever mentioned it to him as if the whole event was inconsequential.

Last season (Sep ’05 – April ’06) was the first “proper” season back for Mr Man where he played for the whole season. I remember accompanying him to games at the start of the season and he would physically shake and sweat all over. How he won a single game in that state I’ll never know. The next day he would begin to feel anxious over the following weeks match, and this is how he went on, week after week. Still, he didn’t give up and I admire his courage. As his Community Psychiatric Nurse has said (and I do agree with him sometimes) there is more achievement in the fact that he continued to play despite his anxieties and symptoms. Before his break away from the game he used to play in the Premier division, but although he played in division 3 last season (the lowest division in this area) I can’t express how proud I felt as I watched him collect his trophies at the end of the season. They represented so much more than simply outplaying his opponents, and there is no question that he worked hard for them and definitely deserved them.

He had some setbacks this last summer, and of course being away from the game from April to September during the season break means starting again in lots of ways, but this season he is coping much better already. He paces the floor at home for about half an hour before we leave, but I suspect this might actually have more to do with the journey as I have mentioned before. Obviously he still has his good and bad days though. Some weeks he finds it very hard to concentrate on the game due to the voices being so intrusive, and he finds it hard to interact with other players. He speaks when he’s spoken to but he has a very intense look about him and seems oblivious to what is really going on around him and just goes through the motions. One week he accidentally hit the opposing player with the ball several times, but because he was so distracted by the voices he hadn’t even noticed and he didn’t apologise. He hasn’t told anyone in his club what his problems are so it must have seemed very rude to some, but of course I knew that it was because he wasn’t really “there”. It was quite embarrassing and when he came over to his seat I had to quietly remind him to say sorry when he hits people with the ball!

Tonight he coped fantastically well, interacting with other players from several teams. I noticed that he approached people himself to initiate conversation, and he had a laugh with some players. He seemed relaxed and he played very well. As I type these notes up he is sleeping on the sofa, exhausted from the evenings events.

By the way, he won all of his games.

Patient rights verses patient safety

June - October 2002

On Thursday I came across this news item which highlights a problem that unfortunately Mr Man and I are all too familiar with.

It is unclear whether the patient in this article discharged himself from the secure unit at the hospital*, was given home leave, or whether he escaped after being given permission to walk around the hospital grounds, as several articles (all from the same news website) differ slightly in details, but whatever the case, one thing is clear: he had not been assessed adequately to determine whether he was a risk to himself or others.

Once again I am moving into an area that I wasn’t planning on blogging about yet, but during Mr Mans first hospital admission this was just one of the ongoing problems that we had. Again and again Mr Man was released into my care for home leave, placing me under unimaginable pressure for days at a time, as he was very suicidal, but also he suffered from command hallucinations telling him to kill others. The problem was partly that the consultant and some of the nursing staff simply refused to accept that Mr Man was even suffering from psychosis, despite an assessment proving otherwise**, but also, just as the news article explains regarding the patient John Barrett:

"…too much emphasis was placed on [the patients] wishes and he was not assessed adequately."

In Mr Mans case, he wanted to go home as often as possible since he didn’t believe that he was ill, as is common with all Schizophrenia sufferers, but also, due to his psychosis he believed that the staff were working for “the company” and trying to control him with the use of medication. Due to these feelings he was understandably very keen to go home each time the consultant or other staff members suggested home leave, but that doesn’t mean that he was well enough to. Often he asked for home leave himself, and the staff never refused as it was thought to be a “good sign” that he wanted to go home. It was very difficult for me to say no, as I was always asked in front of Mr Man, and of course I had to be careful that I didn’t end up looking like the “baddy” who was forcing him to stay in the hospital against his will, and thus lead him to believe that I too was working for “the company”.

Although he had been through an assessment to determine whether he was truly psychotic, to my knowledge he still hadn’t been through a risk assessment at this point, despite being admitted due to feeling suicidal. He had already been in hospital for nearly four months before a risk assessment was finally carried out on him after he had cut his arm with a razor blade within the hospital grounds, and he was found to be a high suicide risk***. These results were largely ignored much like the results of the other assessment, particularly by the consultant on the ward. Just one week after being assessed as a high suicide risk the consultant said Mr Man could go home for some leave. Thankfully his primary nurse, who had conducted the assessment, ignored the consultant and only allowed Mr Man home leave for a few hours. Two weeks later Mr Man made a serious suicide attempt whilst on the ward.

From these experiences it is easy to see why some psychiatric patients who are released from hospital go on to commit serious crimes, or commit suicide. Often patients are not adequately assessed, and even when they are a number of problems can arise:

• There is a lack of communication between staff members (including consultants) about the level of risk.
• Staff members (including consultants) do not update themselves by reading patient notes.
• The responsibility is wrongly placed on the shoulders of an unqualified carer.
• Staff members (including consultants) disagree on diagnosis or treatment including whether home leave is beneficial or not.
• For a completely unknown reason to myself, risks are ignored by staff members (including consultants).

One factor that staff members fail to take into consideration is that whilst a patient may not be a serious risk to others or themselves whilst on the ward, the level of risk drastically increases once the patient leaves the hospital. This is largely due to the fact that the patient now has access to things previously not available to them whilst on the ward, such as knives, medication, alcohol, rope, and even privacy. This is one reason why the role of the carer is substantially more difficult than the role of the staff member, not to mention the fact that staff members work in shifts, whereas the carers role is an impossible 24 hours a day.

It was mentioned in one of the articles that the staff failed to heed the warnings of Johns partner. This is another problem that we faced often. In the days leading up to when Mr Man attempted suicide on the ward I had desperately tried to get someone to take my concerns seriously about his safety. Unfortunately no one did. This is something I will write about in more detail another time, but as Mr Mans current consultant has said recently “It’s a mistake not to listen to the carer”.



* One article states that John, the patient, could not be held at the hospital against his will, which is completely untrue. An “informal” patient, or someone who is in hospital voluntarily, can be detained for up to 6 hours by an authorised psychiatric nurse, whilst waiting for the doctor in charge to make an application to detain the patient for 72 hours under section 5 of the Mental Health Act 1983. Before the 72 hours has elapsed the doctor can then arrange for the patient to be held for a further 28 days under section 2, or 6 months under section 3.

** At the time it was explained to me that the assessments were “scored” out of 4; 1 being the lowest and 4 being the highest. In the psychosis assessment Mr Man “scored” 4, showing that he was suffering from a very high level of psychosis.

***In the risk assessment Mr Man “scored” 3, showing that he was a high suicide risk. The nurse who conducted the assessment explained that the only detail which prevented Mr Man from “scoring” 4 in the risk assessment was that he hadn’t decided on a location yet.

Untitled

2004 and present day

Mr Man is feeling really anxious just lately. When he’s like that he tends to pace around the house constantly and get under my feet. In the early days I would stop him by giving him a big cuddle to calm his nerves, sitting him down, and encouraging him to express his thoughts and feelings. I had a deep desire to understand how he felt so that I would know how best to reassure him. These days I’m much less patient, which is good and bad for different reasons.

I suppose I still deal with it in a similar way, just a shorter version. I’ll give him a hug and ask him what’s wrong, and whereas in the past it took a lot of probing for him to open up, these days he’ll just tell me what’s on his mind more or less straight away. We used to spend a long time talking about how he felt; I suppose at that time there was a lot for me to learn with so much going on in his mind that I knew nothing about. These days I often know how he feels and what he’s thinking without him saying a word; just by the expression on his face. I’ve learnt over time that it doesn’t really do either of us any good to constantly talk about the negative emotions he feels. It was essential at the start – for him to be understood and for me to understand – but to cope with these feelings on along term basis requires more than just talk. Obviously communication about his symptoms and how he feels is still important, especially if there are changes, but the focus now is more on how to manage them.

He copes much better when his mind is occupied. Thankfully he has lots of hobbies, but he often needs encouragement to do them, and if the anxiety is very bad he may struggle to concentrate. Listening to music often helps to drown out the voices, which are usually the main cause of his anxiety, but music alone isn’t usually enough for him. I find myself becoming more and more bossy with questions such as “What are you going to do today to keep yourself occupied?” This afternoon he was looking particularly glum so in the end I just said “Come on, I’m taking you to the gym”. It sounds easy enough doesn’t it? But it’s taken a long time for us to get to this stage. He used to hide away for most of the day in bed, not wanting to be in sight of the “voices” who were constantly “watching him”, commenting on what he was doing and telling him what he should be doing. He would sleep his life away rather than face the fear of the horrors they would demand he carried out, or for fear of the consequences for not doing so. He was just so drowsy all the time as well from his medication, that when he was awake he couldn’t concentrate on anything to keep his mind off things. There was nothing on this earth that could have motivated him to get out of bed at that time. I know; I tried. Over the course of the day my heart would sink lower and lower as each attempt failed. I had such a mixture of emotions. I missed him so much, but why would I want to force him to face those awful fears by dragging him out of bed? I wanted to be with him, but I was finding it hard to cope with seeing him so depressed and anxious everyday. Once he was up it was impossible to motivate him to do anything. I was finding the challenge so disheartening, so draining; it was often easier to just leave him in bed. I felt like I was failing.

I became increasingly frustrated with the comments made by his psychiatrist during 2004, who we will call Dr Nancy. Mr Man had just come out of hospital after his third admission, and was now taking the “wonder drug” Clozapine. Dr Nancy insisted that I get Mr Man up each day, get him out of the house for a while, and keep him busy. Although I know now that this routine is essential in managing his symptoms, at that time it was impossible - impossible because his symptoms were not yet at a manageable level and impossible because he was too drugged to do anything. I felt that Dr Nancy was placing an unmanageable burden on my shoulders, one that should have been properly handled by someone with the appropriate training and who wasn’t emotionally involved. So many times I wanted to scream at him: “If it’s so bloomin’ easy you come and do it”.

Mr Man was also feeling under pressure to “perform” – that is, to make the improvement that Dr Nancy expected, and to be doing all the activities that he suggested. He felt that Dr Nancy blamed him for not making the speedy recovery he seemed to exact from him, although I didn’t know he felt that way at the time. The pressure to recover made it more and more difficult for Mr Man to be open about how he was really feeling when he saw Dr Nancy, such as if the voices had become worse. He started to hold back from telling him things, but Dr Nancy took a very dim view of me trying to prompt him or filling in the blanks for him. He thought I was being overly negative about how Mr Man was progressing, and overly motherly, perhaps hindering his recovery. This wasn’t the case, but it wasn’t the first time I had been accused of these traits (more about that another time) and I started to question my own sanity as everyone seemed to be happy with Mr Mans progress except me.

Then one day we sat in Dr Nancy’s office and I couldn’t believe what I was witnessing. This man who was usually too depressed to engage in conversation or any other activity was actively participating in conversation and appeared mentally alert as he answered Dr Nancy’s questions. I was shocked, angry, upset, and confused. I was experiencing such a mixture of thoughts and feelings; it’s difficult for me to put it into words. I was so confused, I actually wondered if it was all in my mind, and that he really hadn’t been as ill as I had imagined. I know that sounds crazy, but for years I had had mental health staff telling me that I was overreacting and now I was really starting to doubt myself. Part of me knew it had to be an act, but I didn’t understand why he was doing it. I was angry and upset because it was making me look stupid and overprotective. I was struggling to cope with his illness at home but he was acting like everything was fine. I was worried that he wouldn’t receive the medical help he needed and I knew no-one would take my concerns seriously and that I would have to continue struggling on my own without any help.

Once we had left he returned to his usual behaviour and I questioned him over what had just happened. That’s when he admitted that he felt under pressure to recover. He thought he would get into trouble for still being ill, as if he could somehow make himself well again if he just made enough effort. At this point we decided it would be better if he had a change in psychiatrist. He obviously expected too much from both of us and there was no point in seeing someone who Mr Man was afraid to be honest with, that obviously wouldn’t help him to receive the care he needed. We asked his CPN if he could see Dr Hilary, whose care he had been under whilst in hospital the last time. She is completely different to all the other psychiatrists Mr Man has seen. She allows him to make progress at his own pace, and is so understanding of how he feels; he finds it easy to be open with her about his symptoms. She seems to know exactly how to draw him out, and with 20 years experience she seems to have seen it all, heard it all, so nothing surprises her. She accepts everything he tells her, without ridiculing, disapproving, or trivialising what he has said. I know these are things that should be expected from a mental health professional, but sadly it’s rarely the case. Mr Man is thankfully still under Dr Hilary's care now, and is slowly making great progress.


I actually set out to blog about anxiety tonight, and the problem we have in getting Mr Mans' current CPN to understand what the term means. Maybe next time.

What's Wrong?

October 1999 - November 2001

The last time we went on holiday together was in October 1999, we were celebrating our 2nd anniversary, and we had such a lovely time I didn’t want to come home. I didn’t know then that once we had returned home Mr Mans health would rapidly deteriorate and he would never be the same again. He started suffering from the Epstein Barr virus, but due to pressures at work, and through fear of losing his job he forced himself to go into work each day. At that time he worked for Royal Mail, but he worked in the office dealing with holidays, overtime, figures, that sort of thing. He loved his job but he was under a lot of pressure as no one else in the office knew how to do it, and as if his health problems didn’t make things difficult enough for him, his manager would continually be adding to his already heavy work load. He worked six days a week and would often bring work home with him to do on a Sunday. He would come home from work and go straight to bed, too exhausted to eat, and not get up again until it was time to go back to work. I sometimes would get up at 2am to cook him a meal, just so that I knew he had had at least one meal that day. We hardly ever saw each other and it was a very lonely time full of worry about his deteriorating health.

He started suffering from persistent headaches and his GP prescribed him anti-depressants, which at the time I didn’t understand. His medication caused all kinds of side effects, including night terrors. He would call out fearfully in his sleep and then wake, sobbing. I felt angry at the GP for adding more problems to how Mr Man was already feeling, but I realise now that he was trying to lower his levels of anxiety and thus treat the head aches.

All of these problems continued and gradually worsened over the period of a year, and I would often beg him to take sick leave from work. By October/November 2000 he realised that he just couldn’t carry on anymore. He had had a week off work for holiday (after having to train someone to cover for him), and had started to feel a little better, but with just one day back at work he felt as if he had never had any time off. He finally decided to take some sick leave.

Mr Man is a very proud man. I don’t mean in an arrogant way, but it’s very important to him to be able to work, feel useful, and provide. He found it extremely difficult to stop working, and even more difficult to claim benefits. In the end his own GP had to convince him to claim, telling him that he was entitled to it as he was ill through no fault of his own, and had worked hard and paid tax for 13 years.

By September 2001 he was medically retired from his job, and by this time he had been referred to the Psychiatric Day Hospital and was under a psychiatric consultant for his depression. He was so ill, and sleeping so much still, that our 4th anniversary in the October seemed to just come and go without us hardly noticing, which was very unusual for us as it’s usually a very special occasion for both of us. Days later he was in hospital with Pneumonia and Septicaemia. Neither of us realised at the time just how serious his condition was; it was only a few weeks later when Mr Man was seeing his psychiatrist again, and I was explaining how anxious he had been about getting back to work, when she said to him “Do you realise how ill you’ve been? You could have died. It’s going to take a while to recover from that”. We were both a little shocked by this.

It was about that time (November 2001) when Mr Man was prescribed Lithium. He began sleeping even more – 18-20 hours a day, and wetting the bed every day due to this medication. Although I had missed him so much and was so worried about him while he had been working during his sickness, this was far worse than anything we had faced so far. He sunk into a depression so low that he became someone I didn’t recognise anymore. It was a very scary time with his psychiatrist mentioning hospital admissions and ECT, but nothing could have prepared me for the fear I felt when I realised just how suicidal he had become. Through all of this no one really knew what was wrong with him, it was just an accumulation of several things - Epstein Barr, headaches, recovering from Pneumonia and Septicaemia, and now severe depression.

Next: "One Flesh" covering November 2001 - May 2002