Tuesday 23 July 2019

No matter how hard you try, you won't get it right

Alzheimer's is as individual in its manifestations as are the people it afflicts, writes Mary Mitchell O'Connor

Time to care: Mary Mitchell O’Connor wears purple to remind people of Alzheimer’s Awareness Week which starts with World Alzheimer’s Day tomorrow
Time to care: Mary Mitchell O’Connor wears purple to remind people of Alzheimer’s Awareness Week which starts with World Alzheimer’s Day tomorrow

Mary Mitchell O’Connor

Very few politicians ever go on television to confess failure. But that's what Minister for Finance Michael Noonan did, a few years ago. He wasn't confessing political failure. He was confessing personal failure: the failure to manage what happened to his beloved wife, Flor, when she developed Alzheimer's disease. He didn't get it right, he said. He tried hard, but he missed countless opportunities to get it right.

In that emotional interview, Michael Noonan personified thousands of people right around this country whose wives, husbands, fathers or mothers have developed this form of dementia. Nobody gets it right. That's the reality of it.

Families experiencing Alzheimer's disease in one of their members do their best, but, like Michael Noonan, find it's never good enough. That's because the disease is as individual in its manifestations as are the people it afflicts, and because what are later recognised as the early signs don't arrive, at the time, with notification attached, so spouses and children of the sufferer go through phases of bafflement and irritation. The phrase "a bit confused," sounds benign and manageable, but the first evidence of that confusion tends to take the form of sporadic missteps that don't clearly add up to a problem, let alone a diagnosis.

Something gets put in the wrong press. Or brief panic happens over a mislaid wallet or purse. Or a good driver misjudges a simple task they have undertaken a million times before.

Each of the instances gets dismissed as akin to what could happen to any one of us in a moment of inattention, and things go on. But then, the instances get more serious, their seriousness often masked by the lack of an explanatory pattern. A mother puts the kettle on the gas ring. Fine. Except that it's an electric kettle and the placement does no good to either the kettle or the cooker. Or, when the purse goes missing or seems shy on change, the owner becomes convinced that her children or grandchildren are stealing from her.

If the progress of Alzheimer's were predictable as a smooth slope, relatives would get the message early and manage superbly. But it is neither like a smooth slope or a flight of stairs. It loops back and forth and has catastrophic sudden losses.

"Looking back, I blame myself so much for how I handled the early stages of my mother's dementia," one friend told me last week. "I just regarded it as a mixture of attention-seeking because of loneliness after my father's death and lack of focus. I kept lecturing Mam about making lists and using sticky notes to remind her of things. 'Come on,' I would say, 'concentrate.' I just didn't get that while she would faithfully make notes, she then wouldn't remember that she had made them or where they were or what they related to. I found so many of those notes when I was cleaning up her house after she went into the nursing home, and every one of them was like a stab of guilt."

Another aspect to the problem is the irregular capacity of sufferers from the disease to rise to the occasion, to now and then gather together the strands of their pre-disease personality. One Alzheimer's sufferer went undiagnosed for years because, whenever she was brought to the doctor by her son, she would charm the boots off him and seem totally competent. Looking back, her son does not blame himself for the slow diagnosis, but he does feel deeply culpable for the fact that he kept arguing with his mother. The pattern was fully developed when his 12-year-old son, after a visit, asked him: "Why are you always fighting with Granny?" The question rocked him into a realisation that he was turning into a hectoring critic, determined that his mother would go back to being what she had always been if she just made more of an effort, and forced him to acknowledge that she wouldn't, that she couldn't, and that he needed to take a very different approach.

This week, like every other week in the calendar, husbands, wives, sons and daughters will make the decision that living at home is no longer possible for their beloved relative. They will research nursing homes and their relative will be admitted to one of them. It is, at one level, a solution to a dire problem, but at another level, it feels - on both sides - like a betrayal, even if it's objectively the best possible option.

The single most important thing, when someone you love gets Alzheimers, is to draw on the available help and experience of others. And to know that, no matter how hard you try, like Michael Noonan, you won't get it all right. That's the reality of it.

Mary Mitchell O'Connor is Fine Gael TD for Dun Laoghaire

Sunday Independent

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