Alan Duff: Dementia diagnosis hardest on families

All Black great Waka Nathan has stage two of an apparently milder form of dementia. Photo / Brett Phibbs

It has been insightful and rather disturbing to read the series of Herald articles on dementia and Alzheimer's afflicting former top rugby players.

The great Waka Nathan has stage two of an apparently milder form of dementia. His fellow All Black and close mate Mack Herewini had dementia five years before he died. A former teacher at my old school, Christchurch Boys' High, former All Black Tony Steel, is another victim.

Most of us know someone with one of these insidious diseases that select at random, but can run in families. Not that anything can necessarily be done to prevent it; one just starts drifting away, or the lights go out, one after the other.

The mothers or fathers of several people I know are in that twilight zone, unable to recognise their own children. My paternal grandmother thought her eldest son my father was "the little boy from down the road".

Ronald Reagan in his last years had no idea he was once President of the United States.

The very thing that defines us, gives our personality, intelligence, spark, drive and flaws - the brain - is what fails some in their waning years, and for some it comes far too early. I saw a newsclip video a year or so ago of a woma0n supposedly far gone to dementia; her daughter lay in bed alongside her and asked did she know who she was. "Yes. You're ..."

Somehow, her mind plucked a memory from the mush and held it up like a diamond. More beautiful than sad. I have this vague memory of visiting my Maori grandmother at Tokanui Psychiatric Hospital when I was five, either giving her a chocolate bar or she gave one to me. In those days, dementia sufferers could be committed to hospital.

To share a personal memory slightly off the subject, I had a dream back in early 1992 of holding my dying father in my arms, crying out, "No. Not your beautiful brain."

If a brain can be so described (that's the language of dreams); his mind was certainly hugely curious about everything. It was a dream so vivid I drove from Hawkes Bay to Rotorua to see him. We had a chuckle about how affected I was by it. I confessed I'd brought a music tape of Russian choral music that I would play at his funeral which we both thought was a long way off. I witnessed a normally unemotional man teary-eyed at hearing the piece. In October that year he died of brain cancer.

All of us ask what would we do without: our eyes or our hearing or being confined to a wheelchair. I'd take blindness rather than a world of complete silence, though life in a wheelchair would be a tough adjustment.

Rarely, though, do we contemplate losing our mind. I guess the brain in its ordinary state can't comprehend such a thing. In my opinion the comfort is that, once dementia has set in, there's no suffering for the person affected. One is fully checked out, and there's no coming back from a world of basically functioning otherness declining to near nothingness. It is the family members who suffer.

It's not how I want to go, nor for my loved ones to have as last impression. Carry me out on a bed of books in a state where I have one last searing, lucid glimpse of the final blackness waiting at the end of some gloriously lit chamber or sky. Don't let me die not recognising my own children, wife, siblings, family members and friends.

But I'm at the age when that could happen. Decades ago, I agreed with my step-grandmother that if she lost her mind to dementia I'd help her end it. It was a casual, theoretical conversation, in which she'd scoffed at the notion of going to heaven and meeting up with my grandfather.

"How old will Oliver be? In life we had a 25-year age difference. Would we be back in that age-state when we first met and I was 28? But I don't want to be that age again: gullible, naive, rather unsophisticated, and definitely my husband's intellectual inferior."

She did not die with dementia, and I'm sure she's not in heaven.

When Gerard Manly Hopkins wrote the lines, "O, the mind, the mind has mountains, cliffs of fall. Frightful, sheer ...", he was in a state of personal despair.

What's sad about a mind taken by protein entanglements in the brain is an ever-growing darkness and a shutting down of awareness. A departure from being a meaningful human being. We don't wish it on any family.

The good news is a cure is becoming increasingly likely.

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