The Battle for a Diagnosis

My step-son Michael, is 29 years old and a very ill young man.  The story of the battles my husband William and I have fought to get him care, really beggars belief.  I often look back and wonder how I found the determination, the inner strength, sheer willpower and bloody mindedness to carry on in the face of so much obstruction and difficulty, but carry on I did. 

I should say carry on WE did, as William fought long and hard too, but at times, the mountain we were trying to climb simply overwhelmed him, and his own mental health issues would surface.  He suffers from Depression, Anxiety Disorder and Borderline Personality Disorder.  He would disappear into one of his black holes on occasion, when the pain of seeing his son in such a state was simply too much for him and I would find myself doing battle alone, or even to get care and treatment for both of them.

It all started around 2004, which was before I met William.  Michael his son, had been a bright, intelligent young man.  He left school and chose to work rather than go on to college.  I gather his father would have liked him to continue his education.  However, he allowed Michael to make his own choice and supported him in it. 

By the age of eighteen, Michael had a drink problem!  It later transpired that he had been drinking since he was fourteen, but this was not known at the time.  William and Michael’s Mother had separated in 2002 and father and son got a flat together initially, then went to Canada with a view to emigrating, finally returning to yet another flat back home.

In 2005, everything kicked off big time.  Michael started taking things apart, torches, lighters, speakers, his car dashboard, the family computer and so on.  He started staring up at lights, pacing back and forth and saying weird things.  He thought ‘They’ were after him, black cars were following him, there were cameras in his car dashboard, his radio, his TV, the light fittings; he thought everyone in the world knew who he was and that he was living a life similar to that of Jim Carey in the ‘Truman Story’.  There were other paranoias too -  9/11 didn’t happen, it was all a plot to ridicule him; his father was ‘Son of Sam’, the New York Serial Killer; his local football team lost an important match because his favourite player missed a penalty, and that was just to ridicule him; the Bradford and Sheffield football tragedies never happened; he was the son of God………………….  many more too, but these were the main recurring themes.  He was just twenty years old.

My husband finally argued enough to get him a hospital admission, but because there had been little budget investment in Mental Health Services locally, the old hospital ward had been closed down and all we had in our area was a short stay acute ward in a newly built facility.  The other ward in the building was for the elderly.  Michael was duly admitted there, but the consultant psychiatrist said he did not want to give a diagnosis or Paranoid Schizophrenia, because he did not want to label him at such a young age.  A commendable attitude, except that not only did he not label him, he did not treat him either.  He spent several weeks in a hospital only designed for short stay patients without medication.

My husband was visiting one day, when one he was approached by one of the long serving nursing staff who previously worked on the old ward in the General Hospital and who knew him from his own admissions over the years.  He took William, to one side and said unofficially, that if it was his son, he would be putting in a complaint!  He said that Michael was perhaps the most ill patient in the hospital in his opinion and to keep him without medication was barbaric.  Acting on this advice, my husband wrote the letter of complaint and eventually some treatment regime was established.

During this period, William and I met and started our relationship.  Michael would regular abscond as in his ‘Truman Story’ paranoia, he did not believe this was a real hospital or that the doctors and nurses were real.  They were actors he believed, and ‘THEY’ had instructed them that he must be burnt. 

He firmly believed that they would evacuate the building while he was showering and then set fire to it.  Consequently he would not shower, simple logic I guess, and escaped whenever he could.  By now he was sectioned and there was many a night when we were riding around the town in the early hours of the morning trying to find him.  Often we would give up and return home and in due course, he would arrive.  The dreadful, heart-breaking, gut-wrenching fact was, we always had to phone the police to come and get him because he was sectioned!  Sometimes he was treated gently and with compassion, sometimes he was frog-marched out in handcuffs.

The other problem we has was that Michael, with his intelligence, realised that to get out of this ‘hospital that was not a hospital’ in his mind, he needed the staff to think he was well.  He quickly learned the buzz words and how to ‘present’ when assessed.  He would then come to us for his two hour daily leave and we would have two solid hours of all the paranoia, the conspiracy theories and the muddled thoughts that were actually the reality of how he was. We were a sort of safety valve for him to get it all out, then he could go back and present as fairly OK again.  The end result of this was that many in the hospital did not believe he was ill.  They thought he was putting it on.  Quite why they would think anyone would do that and be locked away in such a place is beyond me, but there we are.

Eventually however, on one escape he drank so heavily, that something tipped the balance and he descended into an acute phase.  The one good thing to come out of that was that at last the staff believed he was ill, although we subsequently found out there were still some who did not!  They needed a suitable hospital for him and he was transferred to one within our health authority, some half hour’s drive away.  He was there for over a year and eventually discharged into a little flat back in our home town, with a Care Coordinator who was a member of the Early Intervention Team. 

I am sorry to be derogatory, but ‘chocolate fireguard’ comes to mind.  From very early on we suspected Michael had started drinking again, and experience told us, this was a slippery slope.  Could we get this gentleman to listen, not a chance! 

Michael missed his appointments, failed to turn up for his depo injections and generally avoided this chap as much as possible. He was drunk most of the time and very vulnerable.  He was set up by a local ‘lady of the night’ and her pimp and lost all his money.  They obtained his pin through a devious plan, stole his card and emptied his account.  We then suffered weeks of problems as he badgered us for money for drink, stole from us, pawned everything in his flat, rang the hospital and said he was committing suicide, subsequently having his door broken in by four policemen in a riot van, and oh so much more.

Eventually, after one event, the police took him back to the hospital and he was readmitted. By now he was really ill, having been off his meds for weeks and having consumed copious amounts of alcohol.  He was however, still without an official diagnosis, but was sectioned anyway, as being a danger to himself. 

Thus began another hospital spell, during which he hid his meds, escaped countless times and generally caused havoc.  On one of these escapes he drank heavily and again tipped the balance from really ill, to seriously ill.  He developed ‘word salad’, a condition where random words with no association just tumbled out of him.  They made no sense, they were not sentences, he uttered word after word in a low monotone for the whole of a visiting period.  He was pale, gaunt and his eyes were staring but terrified at the same time.  He thought God was talking to him and could be seen laughing and openly conversing with this unseen force.  He went on hunger strike to prove that God was looking after him, he did not need to eat.  He would run around the ward, dropping to the floor to do press ups to prove he was fit without the need for food.  He believed he was the son of God – that God sent Jesus who did everything right and was killed for it, and now he had sent Michael to do everything wrong and live, so he must make sure ‘THEY’ did not manage to burn him as this would thwart God’s plan!

  A hospital with long term care facility was needed, not our local short stay unit and possibly something more specialised than the one half an hour away.  It took weeks to find something, as the only ones suitable that could take him were private establishments out of area.  Getting the Commissioners to agree to fund this was a lengthy job, with many a meeting and many a battle, but in the end, Michael went to Blackburn, a two hour journey away.

He was there three years, and for three years we trotted back and forth across the M62, visiting, attending Ward Rounds, CPA meetings and the inevitable Tribunals that he insisted on applying for.  He then came back to the hospital half an hour away for a further stay. 

Finally he was then discharged into a flat managed by a company called Creative Support.  This was a type of sheltered housing, built just behind the local short stay unit, with staff on hand to help with domestic issues, budgeting, life skills etc.  A great idea, except they are not able to force their services on someone and Michael would not engage with them.  I had my suspicions from the early days, but William so desperately needed to believe the Michael was sober and medicated, I kept my counsel.

Michael was on a Community Treatment Order and still on a section.  His CTO stated that if he drank, failed to take his meds, failed to engage or missed appointments, he would be in breach of the CTO and would be readmitted. 

Eventually it became apparent that he was drinking again, in fact, after three years sober, he had drunk the first week home.  He was off his meds, the paranoia was back with a vengeance, and the cycle was about to start all over again.  We contacted the local unit, expecting to be told to bring him in.  Not a bit of it, ‘We are a Mental Health facility’ I was told, ‘Just because he is drunk, doesn’t mean he is mentally ill’.  I reminded them about the CTO, but to no avail.

We reached a point where Michael himself tried to get admitted, but they thought it was just because he was out of money and wanted to be fed for a few days.  The first thing they did was breathalyse him.  He blew over six times the drink drive limit!  They said he was too drunk to assess so they could not admit him.  What?...............  I could not believe it.  He actually wanted to be admitted at that time, so I told him to stay off the drink till the next day and I would take him back at 11a.m.  He still blew over the limit, but they deemed him sober enough to assess and he was duly admitted.

Shortly after being admitted however, he decided he didn’t want to be in there, got his act together, presented normally and got discharged again. 

My husband had been on a downward spiral for some time, his mood was deteriorating and I could sense the crash was on the way, this was why I was running around trying to get Michael help ad trying to save William having to confront the reality of the situation.  By now however, he simply could not take any more.  He disappeared for 24 hours and attempted suicide.  When he was allowed home, we were being visited by the Crisis Team three times a day, but he couldn’t even open his eyes to look at them, let alone speak to them. 

It was in the middle of this dreadful time that I had what I will always feel was the day from Hell.  Michael turned up, but I had been advised to keep him away from his father.  I had also been told not under any circumstances to give him money for anything, because even if he played the ‘I’m hungry, would you see me starve?’ card, any money I gave him would go on drink.  ‘Tough love’ I was told, ‘was what was needed’.

At that time I was permanently keeping doors locked so my husband did not go missing, and on the day from Hell, I was relieved that this was the case.  I saw Michael approaching and met him on the other side of the back door, speaking to him through the glass.  I told him I couldn’t let him in because his father was too ill.  He wouldn’t believe me and prowled around the house for four hours, knocking first on one door, then the other, peering through windows and making threats.  He put my car windows through with a brick I later discovered. He was on his way to steal a litre of Vodka from one of the corner shops and was observed doing it by a neighbour.  He returned with the Vodka and sat on the garden seat drinking it and then smashed the bottle and self-harmed with it.  He was shouting that if his dad was ill, he hoped he died because he was the serial killer from New York, Son of Sam.

He was already drunk when he turned up, so by now it was a wonder he was still standing, but his alcohol tolerance is immense.  He started to make threats to me about what would happen if I wouldn’t give him money, let him in, get his father to him …………….  reluctantly, I called the police.

It was one of the hardest things I had ever done.  Call the police on my own step-son without his father giving the go ahead, but I was just about at my wits end.  I am five foot nothing on a good day with a following wind; Michael was six foot two, drunk and menacing.  The real Michael is polite, considerate and sensitive, but there was no sign of that boy now.  The police picked him up and took him back to the hospital, where thankfully, he was admitted.

Fortunately his father was blissfully unaware of the whole episode, and was still in his dark place when Michael absconded, attacked a girl and was almost arrested.  Being sectioned saved him this time, but as the hospital was subjected to an investigation for his escape, they quickly found more appropriate care for him.  Ironic really, had they done so previously, the whole sorry episode could have been avoided.

Michael was sent to a Forensic Unit out of area, and there we were given a diagnosis at last.  It was now early 2013, it had only taken nearly ten years!  He has Schizoaffective Disorder, Paranoia and Anxiety Disorder.  This is now ‘official’, so hopefully in the future, we will have less trouble getting help if we need it.

Michael is now doing very well.  He is stabilized on Clozipine, used for Schizophrenia and Psychosis, together with a veritable cocktail of other meds, including Antibuse.  He has been transferred out of Forensic back to the hospital half an hour away and is coming on overnight leave most weeks, catching a train on his own, staying the night and returning next day.  He has enrolled for night school and joined a gym.  He has been given a job in a local charity shop and café.

This week he is being transferred out of the hospital into a half-way house, which is on the other side of the town but still under the management of the hospital.  There he will live independently but with support staff.  This time he does have to engage with them!

The aim is for him to be there for eighteen months, then discharged back home to a flat of his own.  I am being positive, I do believe all will be well this time, and I do stamp hard on that little voice deep in my subconscious that tries to say, ‘and then the cycle starts all over again’!!!  I must believe all will be well this time; that the help will be there when we need it.  Both William and I have developed more and more health issues over these ten years and can no longer go tearing around the town in the wee small hours looking for him or cope with the stresses of his delusions and alcoholism.  It WILL be different this time, after all, WE HAVE A DIAGNOSIS!!!