What a difference the diagnosis ‘terminal’ makes. Almost the second after the ‘terminal’ button was pressed, Operation Cancer went into top gear. The care and attention for which my sister and I had been fighting for months was suddenly there in abundance for Dad. We weren’t in the dark any more, shouting and screaming for help. It was as though all the lights had come on, as though a gag had been removed.
Dad was assigned his own personal guardian angel in the form of a Macmillan nurse: a woman whose very voice was a balm in those panicky, unreal days of coming to terms with ‘terminal’. She was there, on the end of the phone 24/7. She was a lifeline to our family while we squared up to death and looked him in the eye.
Up until this point, every aspect of Dad’s care had been a battle. This was because Dad’s home situation had not been adequately assessed. Dad was therefore discharged, barely a week after his tumour was removed, into a world of chaos.
‘Dad, you can’t go straight home after a major operation like that. You need some respite care.’
‘I will be fine.’
‘What about bathing? Going to the loo? Preparing meals?’
‘I will be fine. Mum’s there.’
‘Dad. Mum is mentally ill. You are her carer.’
‘We will be fine.’
Turns out Dad had told everyone he ‘would be fine’. No one knew that he was going home to someone on the autistic spectrum; someone crippled with anxiety and depression; someone Dad had been caring for himself until he had fallen ill. No one knew that he was going home to someone who was more worried about him ‘oozing pus and blood’ on to her carpet than she was worried about his personal wellbeing. No one knew that he was going home to someone who would insist that he sleep on the sofa on a piece of plastic sheeting that she had dragged out of the garden shed; that she would eat and prepare nothing but lettuce and ham; that she would not let any carers in, not even the District Nurse. No one knew what a nightmare home had become since Mum’s first psychotic episode nearly two years before.
Within the week Dad was back at Stanmore being treated for post-operative infections. He stayed there for the next three months until it was found that no more could be done for him. Until his cancer had spread and taken hold throughout his body. Until his guardian angel stepped in.
Mum, meanwhile, was at home, her own mental health deteriorating.
The right understanding of any matter and a misunderstanding of the same matter do not wholly exclude each other.
This quote from Kafka’s The Trial could easily be a line from the Mental Capacity Act 2005. Once you enter the hell that is mental illness, whether you are the patient or the carer, you enter a world that is pure Kafka. Because, unlike Macmillan Cancer Support, it turns out that Mental Healthcare does not provide guardian angels. There are only judges and jury and prison guards advising that you grope along the wall in the dark until you feel a door. A door which you can bang and scream at to no avail, because the lights don’t come on and the gag isn’t removed.
There is no Operation Mental Health, just as there is no ‘terminal’ button – not in the form of diagnosis in any case. You can find a way of making one and pressing it yourself. Mum tried. Luckily she failed. Unluckily, even that was not enough to get her the help she needed. We had to wait until Dad died for that.
Because Mum did have a guardian angel. It was Dad. And now he’s gone.