The old lady in black was bent over the body of her son. She rocked backwards and forwards, wailing. Do I really need to watch this I thought? I switched over and was subjected to the woeful groans of EastEnders. That's enough, I thought. As I was about to take my cup of tea into the conservatory, my son Steve, who had been quietly studying the floor, suddenly raised his head and demanded to know why I had rung the BBC. ‘BBC! What are you talking about?’ ‘You know,’ he retorted. ‘You rang the BBC to tell them what a lazy sod I am; they’ve been broadcasting it all day.’ My heart missed a beat. I went cold, my stomach turned — I had become a carer.
I had always looked upon people who care as kindly people doing things that I was glad I did not. I had this image of Mother Theresa types sacrificing their lives for the ones they love, quietly and gently going about their business. Five years on I feel more like the headmaster at a school for difficult children. My wife says it's like having achild again — worrying what time he goes to bed, what time he gets up, what he is doing when he goes out, about his eating, the friends he keeps, etc.
Friday June 2000
‘I woke up this morning feeling so tired I felt it was time to go to bed. Had a bad night last night. Steve told me at 3.30 a.m. that he thought Eric Clapton was a gift from God.
While cleaning my teeth, I noticed three more grey hairs, deepening crow's feet and rampant nose hair. Got to work late, feel asleep over my cup of tea.
Got home at 5.30 p.m. Steve was having breakfast. He complained that the dustcart woke him at 3 p.m.
Lent Steve £2 for fags. I reminded him that he now owed me £ 4740. He promised to pay me back on Thursday.’
When I am asked what it is like to be a carer I say it's like every grandparents’ nightmare — having the grandchildren to stay but not being able to get rid of them. Like most people in their mid 50s you want to re-discover your life again. You want to be able to go out for the night and not be plagued with guilt and worry with what the place will look like when you get home. You want to spend your hard-earnt savings on all that SAGA can throw at you. The last thing you want to be is a carer.
September 2000
‘I read today that 1 in 10 people with schizophrenia commit suicide. Have now become paranoid that Steve will do something stupid. I went in to his room last night to check that he was OK, I prodded him to see if he's still alive. He woke up with a jump, “What are you doing creeping around my room in the middle of the night, you mad sod… bugger off”. I felt a real pratt.’
Nobody can really understand what it's like to be a carer unless you have been there. I felt like my head had been burgled and someone had run off with my happiness. You are plunged into the most strange and bizarre world imaginable. Waking up and finding all the televisions in the house facing the wall, the radio in the fridge and your CDs in the washing machine. Apologising to your next-door neighbour for your son arguing with his apple tree in the middle of the night. Trying to explain why he had daubed their windows with broken eggs and making excuses to the postman as to why the letterbox is regularly sellotaped.
Saturday November 2002
‘Woke up this morning with a smoker's cough. The house reeks of Steve's fags. Seriously thought of taking up smoking. At least I would be inhaling my fumes and not Steve's.
I reminded him that he had said that he would give up every day for the past 4 years. Suggested that just to stop smoking in the house would be a start. He promised to do this. One hour later Steve set off the smoke alarm in the lounge. He apologised and said he forgot.’
Steve unfortunately verbalises his voices, which at times can be excruciatingly embarrassing — especially in front of women. ‘I beg your pardon’ the well-developed barmaid demanded. ‘Sorry, he has just come out of hospital,’ as I speedily grab his arm and leave.
April 2003
‘Steve's very agitated this afternoon. He screamed and shouted at the DSS, insisting that they sort his benefits out. I advised him that it was better to close the window and use the telephone.
Steve handed me a pile of unopened letters, told me to sort them out and then asked me if he could have some money on account.“On account of what?” I asked.“On account of my successful negotiations with the DSS,” he replied. Gave in and handed him a fiver. Steve came back blotto at 8.30 p.m. I asked him how he could possibly get so drunk on a fiver. He said he had borrowed a few glasses of my malt whisky to warm up his confidence prior to his visit to the pub. Nothing on the telly. Went to bed at 10.30 p.m. — Eric Clapton is beginning to grow on me.’
Dealing with the system is at times worse than coping with the illness. Trying to complete the 16-page DLA form from the DSS is enough to send anyone round the bend. Q9 — Do you have trouble getting out of bed? — well yes and no, Q10 — ‘How many days in the week do you need help getting out of bed?’ — well, err, I don't know! After four hours struggling in front of the telly trying to fathom the form out, I am left feeling a complete inadequate and beginning to rethink my life.
January 2004
‘Had a bad day. Went to a conference in London. Heard some 11-year-old social worker ranting on about the importance of independence and how carers must learn to“let go”. Let go! Let go!
I am biologically programmed not to let go. Hasn't David Attenborough taught you anything about human nature? I know I must let go. But I can't because you know why, because I am his father and my wife is his mother. Don't you get it? All we want to do is to rescue him from his living hell. I want to get inside his head and rip out whatever is destroying him. Let go — I’ll let go when I can trust you and trust the system.
And where do you suppose I am going to let him go to — some crap bedsit where he can live in isolation and loneliness for the rest of his life, where he has to battle against poverty and hunger, where he is exposed to the worst element of society, drug dealers, thieves and a society that wishes he was not there.’
It's been nearly 6 years now and one thing you do learn is how the human species can adapt. Steve still has voices but he now knows they are his thoughts and not aliens — he still smokes like a trooper but now mostly in his bedroom. I have stopped creeping around the house. As a family we are now planning, with Steve, a more independent life for him.
I’ll leave you with one of my more recent diary entries:
May 2005
‘Took Steve to the pub last night…. He downed two pints for every one of mine. Within an hour and six fags later he managed to turn our corner of the pub into a scene that resembled London smog. The young girl who was collecting glasses had to ask if there was anybody in there. Steve showed my mates his latest drawings, which he had been doing at the local day centre. Everyone was impressed.
Steve thought they were crap but was chuffed by the praise. Went to bed late cursing, as I need to get up early in the morning.
Steve put his head round the corner, “Do you really think my drawings are OK?” I said they were really excellent. A sparkle appeared in his eye. I closed my eyes, smiling to myself, could Steve be on the mend?’
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