Straight to voicemail

It’s been two days since I’ve spoken to Ben. He won’t answer the phone or his mobile. He won’t answer my Skype calls. I’ve asked a friend to contact him. Most of the time, he won’t answer her calls either.

Meanwhile, I have been searching for detox centres. One of them quoted a fee of 4000 pounds for two weeks. None of us has that kind of money to throw around. Given that Ben used up all the public funding he had from our borough on his day rehab programme (the day programme he failed from day 1 because he was drinking on the sly), it is very unlikely that he will access another detox through the NHS. So, we have to go private.

I think most families of addicts end up here. Having exhausted all avenues through the NHS, they have little choice but to go private. It is not something I believe in, in principle, because, as Danny Boyle’s Olympic tour-de-force so movingly showed, the NHS is a great British initiative founded on the most basic principle: that everyone is entitled to quality healthcare, whatever their financial means.

But here we are. The NHS has helped us, yes. Ben has been detoxed twice already and received a generous funding package for him to go into a rehab day programme. But the  fact remains that he was given the wrong care, because the NHS blindly follows guidelines motivated by budgetary concerns. Because he hadn’t received care in the community the funding panel, in their infinite wisdom, chose to send Ben to a day programme rather than a residential one. Everyone, including Ben’s own care manager, knew this was the wrong choice. In the end, it was a waste of public money.

So, here we are. There is no guarantee that going private won’t be a waste of private money, but what other choice do we have?

How do I feel about all this? In refusing to answer my calls, in provoking and sustaining my anxiety, Ben has done the unforgivable. Yes, I will sort out his detox. Yes, I will ensure he gets from there to rehab (well, my friend will). I may even try to sort out an exit plan for him, once rehab is over. That exit will probably entail him going back to Australia. Because I don’t want him back in my home.

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Rehab day programme

The funding panel made its decision on Ben’s application for residential rehab yesterday. In their infinite wisdom, they have chosen to refer Ben to a non-residential, structured day programme.

This means that Ben will be returning home every evening from whichever centre. And every evening I will be wondering whether he has relapsed, what state he will return in, and whether I will finally lose my mind and kill him. The one thing I know is that I can never – never – see him with that glass-eyed, pissed expression again.

Ben is in shock when he receives the news (he had been travelling for more than two hours to an appointment that he was told was at one end of the borough only to find out it was at the other end, and then, once he got there, unnecessary), and I thank myself for being a paranoid control-freak, arranging for my friend to be with him.

I spend the whole tube journey back from work screaming ‘NOOOOOOOO’ over and over again in my head. It is a high-pitched, crackling scream that crushes every rational thought in my mind. I want to cry, but there are no tears. I am in public, after all.

Apparently, the panel based their decision on the notion that Ben has enough family support to warrant a day programme. Family support? That’s me – effectively a single mother and breadwinner with no extended family to rely on. A woman on the edge of breakdown.

I kick myself many times – in the ribs and in the head – for being so damn efficient at  intervening in Ben’s case with all and sundry. I should have thrown him out. It seems that I am being punished for being compassionate.

But I can’t do this. I know I can’t do this any more. I have reached the end of my reserves.

I want a copy of the panel’s report so I can rebut it – so I can tear its logic into nano particles. I am writing to my MP, to my cabinet minister, calling on our local service-users’ advocacy group – anyone who will listen. But first, I need to speak to Hanife.

So, yet another work day is blown to bits. It is 7:33AM and my head is already throbbing.

Assessing his rehab needs

Ben is out of hospital. He came out last Friday evening, groggy and irritable. I spent the whole weekend plus the last few days in a state of acute anxiety.

I watched Ben every time he went outside for a cigarette, and refused to let him go anywhere without a chaperone. On Monday, he had his community care assessment – his assessment for rehab – at our local NHS drug and alcohol service.

This was our make-or-break appointment. It was our opportunity to work with the community care assessor, Hanife, to build a case supporting Ben’s request for rehab. His case would then go before a funding panel which would approve or reject Ben’s application.

From the beginning, it was clear that Hanife was on our side. She had already been in regular contact with me. She tried to get the hospital to postpone Ben’s discharge to Monday, advised me on how to keep Ben busy post-detox, warned me it was(is) a dangerous time – where the likelihood of relapse is very high.

Hanife’s default position was that Ben needed residential rehab. We talked about why Ben felt he needed rehab, what his motivation was, what his objectives were. The complexities of his illness and treatment were unpacked. There was the urgent need to address his depression, anxiety and severe sleep deprivation. He needed space to explore his broken family relationships, and the time to rebuild his confidence and self-esteem.

There were questions about Ben’s ‘human capital‘ and ‘social capital‘ – government speak – all of which only reminded us that the funding panel’s decision to approve or not approve Ben’s application was governed entirely by financial concerns.  But Hanife seemed positive and ready to do battle with the panel in order to get what we needed. We felt we were in good hands.

The assessment took just over two hours. We came out feeling hopeful. Ben seemed less anxious. Nevertheless, I had set up a rota to cover the days when I couldn’t be at home with Ben. One of my friends came up from South London to spend the day with him on Tuesday. Another travelled from Cambridge to be with him yesterday, despite Ben’s protestations. ‘A bit unnecessary,’ he kept saying, acquiescing only to humour me.

We were preparing ourselves for a decision, which was due either this or next Wednesday. When it came, it unhinged us all.

Accident and emergency

Ben was admitted to hospital. It wasn’t planned.

He woke up shaking, but determined to get to his regular psychology appointment at our local NHS drug and alcohol service. I stayed home from work to make sure he got there without injury. Today was also going to be the day he would finally be assessed for rehab. I was going to accompany him to that appointment, too.

While Ben was with his psychologist, he took ill; he was in acute withdrawal. They called an ambulance. His psychologist, Jane, came to get me (I was waiting outside). I found him sitting on the floor of one of the consulting rooms, his face grey, his body trembling. We ended up in A&E at a hospital an hour away from us.

There was a lot of waiting. We waited an hour before a nurse showed Ben to his own little curtained cell. About 30 minutes later, they wheeled a bed with a filthy mattress into the cell (Ben was sitting on a plastic chair until then). Another 20 minutes went by before they disinfected the mattress and bed frame (with a disposable wipe), dried it and put a sheet on it. The fitted sheet kept springing off at the top, bunching up behind Ben’s head. The bedding looked grey and dirty, even though it had been cleaned.

About 20 minutes later, an A&E doctor came in to speak to Ben and me. She asked us all the same questions the ambulance staff asked us:

  1. how are you feeling?
  2. what brought you here today?
  3. when was your last drink?
  4. is it normal for you to vomit if you haven’t had a drink?
  5. how long have you been drinking for?
  6. blah,blah,blah.

This doctor ordered several bloods, two x-rays and said she was admitting him to hospital for a couple of days. While she was taking his history, Ben vomited. A nurse, who seemed to have been beamed in from a planet far far away, took several vials of blood and put a line in. She pumped some medicine into a vein in his forearm, then attached two drips. Ben was also given four colourful capsules, with no water. The water took another 10 minutes to arrive.

Once the doctor left, we sat in silence. I read through a 4000-word document on my mini smart phone. I listened to the doctors’ and nurses’ banter. ‘Are you normally constipated?’ asked the doctor in the cell next to us. The patient had severe abdominal pains, which the consultant declared were either:

  • appendicitis, or
  • constipation.

Ben was wheeled away briefly for his x-rays, then wheeled back. He wanted to take out the line so he could go and smoke. I told a nurse he needed the toilet… and that he might need a cigarette. The nurse brought him a pulp-paper cardboard gourd to pee into. And said ‘too bad’ when Ben said he wanted a cigarette. Inside, I was cheering.

A few hours later, a consultant from the medical team, where Ben was destined, came to speak to him. She asked him questions 1-5 several times, and each time, Ben answered slightly differently, before I corrected him. It wasn’t until I was on a bus going home that I realised the consultant was testing his memory.

I stayed with Ben for nearly four hours. He still hadn’t been given a bed when I left to pick up Rosie. I think it was probably around 8pm when they finally sent him upstairs.

Our local NHS drug and alcohol service rang up Ben several times while he was in the ambulance and once in the hospital. It was more times than they have rung him about anything before.

 

Managing my anger

Today, I had my first psychology session at our local NHS drug and alcohol service. Sara, Ben’s previous key worker, had managed to do a few constructive things before she left. I’d asked her several times whether it would be possible for me to get some support from the service, and after checking with management, my request was accepted. It took about four months of waiting, but I got it in the end.

My psychologist, Elisa, is young, probably half my age. I feel vaguely ridiculous blurting out my problems to this demi-child. She has a rose ring and black lace-up army boots. She reminds me of me when I was that age (minus the nose ring). She looks like she should be pulling pints in a grunge bar, rather than sitting across from me, listening to me complain about having to clean up Ben’s vomit.

After five minutes of inchoate rambling, I finally tell her what I’ve rehearsed for so long – that my objectives in accessing this treatment are:

  1. having a safe place to unload my stress
  2. diffusing my perpetual state of rage
  3. accepting that alcoholism is a disease and not a choice (my rational mind knows this, but my heart won’t accept it).

I tell her that just before my session, Ben rang me to say that I should be open ‘about us’. He meant that I should accept partial blame for his condition – that if I didn’t recognise this, then there was no point. I tell her that I do accept partial blame – that I recognise how damaging it can be to live with someone who is hyper-critical (that’s me – hyper-critical – of myself and everyone and everything around me).

But I also say that he was drinking before he met me. That he has always been alcohol dependent, and that it is unfair to lay the blame entirely on me. I tell her a lot of other things I didn’t expect to tell her – a tale of neglect and intense loneliness (mine). And darting below all this, like a ravenous shark, my anger.

It is always there, ready to burst and consume us all. Sometimes, I think my temper will set me alight. I imagine immolating myself on the pyre of my own rage. This is the image I carry around with me every day. The thing that makes me tremble when I’m trying to get everything organised and ready in the morning. The thing that drives me up that hill again and again when I’m running (sprint up, jog down backwards, again and again and again). The thing that sends my pressure along with my volume to the top of the scale.

It is a long hour. Just 35 minutes into the session, I think I’ve already exceeded my time. By the end, I’m exhausted, but a little lighter. I make another promise to myself, to Rosie, even to Ben, that I will find a way to check my anger, find a way to  manage and channel it, regardless of its causes.

Step 5 – Don’t be disheartened by NHS red tape

Ben has been waiting for treatment for his alcohol addiction for several months now. We have been through the mill, raising the alarm about his deteriorating condition as early as last October. Five months of chasing later, and it really was Ben’s GP’s intervention that opened the crucial door.

But my worry lately has been whether we are too late – whether Ben’s health has declined so dramatically that an urgent hospital admission will be necessary, scuppering our hopes of getting Ben into a long-term treatment programme.

Today, we made one minor (possibly major) breakthrough. Ben’s new key worker, Marc, confirmed that the appointment we had been waiting for with the community care assessor – the one which will determine whether or not Ben is a suitable candidate for residential rehab – is finally happening on Monday.

Apparently, Ben’s manager will be making this assessment. It is unclear to me why this couldn’t have been done earlier, since Marc had said that Ben needed to be assessed by someone external to our local NHS drug and alcohol service and now it transpires that someone within the service, namely a manager, is also qualified to do it. I am biting my tongue right now, saving my queries or complaints for later, since the main objective is currently within sight.

Even Ben seems to have been buoyed by this latest news and was upright when I got home with Rosie this evening. He’d managed to prepare the bathtub for her and roast some potatoes for dinner. He’d put a load of washing in the machine. And he’d taken out the rubbish. This new found, if limited, energy can only be attributed to a renewed sense of hope.

Ben’s GP has also been very good at ringing us back when we’ve left messages for him. He has been the lynch-pin in this whole process. Without his intervention, we would still be at sea.

Still, we mustn’t get ahead of ourselves. Marc was very clear with me today that things would not happen ‘over night’. Once the assessment on Monday is complete, the team’s recommendations for Ben’s treatment – namely for detox and residential rehab – need to go before a funding panel. The panel meets every Wednesday, but there is no guarantee whether that paperwork will be completed in time for it to be submitted by the coming Wednesday, in which case, we are facing yet another week’s delay.

And if the panel rejects the application, we are back to square one.

I prefer to assume that the panel will pass the application. I can’t believe that all my complaining/lobbying/beseeching will come to nought. If it comes to it, I have further avenues to pursue – starting with Ben’s GP, again. As long as he remains on our side, Ben has a good chance of finally getting the treatment he desperately needs.

Maybe withdrawal will kill him

This is what I’m thinking now. I’ve tried everything. I’ve tried speaking to Ben’s new alcohol key worker. I’ve tried ringing the GP to tell him that Ben is bedridden and hasn’t eaten anything for days. I keep telling all of them that he hasn’t got more than a few days before he collapses from organ failure or whatever else alcoholics in withdrawal are levelled by. He is acutely malnourished. He is drinking to ward off the more serious manifestations of withdrawal, but he is still throwing up anything he tries to eat – which is very little.

I made him two tablespoons of porridge and begged him to eat it. He ate some of it earlier this evening. I heard him retching outside just now (his illness has no discretion – not only does he drink by the side of the building, but he vomits out there, too – it’s only a matter of time before one of the neighbours knocks on the door).

I am unable to concentrate at work. I worry that he will go into convulsions while I’m out and I’ll return with Rosie to find his body contorted and stiff on the futon.

I don’t understand how the people at the drug and alcohol service can’t see the danger he is in. I don’t understand why they can’t simply do whatever it takes to get him into treatment urgently. I don’t understand why no one – no one –  is listening to me.