The struggle to help a parent pretend

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Indy Lifestyle Online
My mother died from cancer about a year ago, pretending to the very end that there was nothing much wrong with her. On her last day of proper consciousness, she discussed going home when she was well. Denial was the way she coped.

Today, this attitude is becoming politically incorrect, for medical fashion is to tell the patient not just the truth, but the whole truth so help them, God. And if the patient won't co-operate in facing this, they may even be penalised. My mother was. She died without hospice medical care and without Macmillan nursing, because of her attitude.

In the town where she died, cancer terminal services are only available through one single National Health Service hospice. And this hospice gave me the strong impression it would not respect her right to deny the truth.

Pretending you don't have cancer when you do can be infuriating for those trying to help you, as I know only too well. My mother's attitude made looking after her more difficult than it need have been. Yet I also know that she needed her denial.

When the first diagnosis of her cancer was made (to me, not her), she asked me several times: "What is really wrong with me?" Each time, my reply was: "Do you really want to know?" It took six weeks before she answered in the affirmative and then I told her.

After that, she knew, but she preferred not to know. A week or so after I had told her, a consultant carefully explained to her that she had a tumour on her tongue which needed radiotherapy.

"Do you understand what's wrong with you?" the consultant asked her, groping for her informed consent. "Oh, yes," said my elderly mother with a charming smile. "It's something to do with my false teeth not fitting."

Her GP understood her well. When I asked if my mother could be referred to the hospice, she begged me not to do so. One of her patients, a retired naval commander, had had a bad experience there.

A female poet, somehow attached to and roaming round the establishment, had offered to write him a special poem. This poem compared his forthcoming death from lung cancer in some detail with drowning at sea. The commander, a sensible man, saw the funny side but warned the GP that others might not. Yet as my mother got worse, I wanted help, even if she did not. I rang the hospice and found the poet had now moved on. I therefore got a referral via the cancer specialist, bypassing the GP's refusal.

But when I rang - and I rang two or three times as the stress of it all mounted - I could never extract a promise that my mother's denial would be respected. Nor would the hospice allow me access to their advice, their counselling or their Macmillan nursing, without my mother being taken there first. They wouldn't even see me without her.

Now that it is all over, I realise I should not have taken no for an answer. I should have pushed my way past the person answering the phone, turned up and insisted on talking to the authorities. Perhaps if I had done so, I would have learnt that they would have allowed my mother to continue her pretence.

But I was so overwhelmed and exhausted with caring for my mother that such efficiency was beyond me. Besides, neither the GP nor anyone else told me that there were only a few weeks more. I think a doctor specialising in terminal cancer might have known, but, Catch 22 again, he was only to be found in the hospice.

So she died without specialist help, and it still torments me to think her last days might have been better medically managed in a hospice. She died in a nursing home, with a slightly dodgy morphine pump, and her dying was not easy.

But at least that nursing home and its doctor respected her wishes and were truly kind. They succoured me and my sister and brother as we waited at her bedside during her long, slow death. They did their very best, even though they weren't specialists in helping people to die.

Most important of all, they gave her the freedom to die pretending. That was her final choice.

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