‘I will never forget the loneliness of being a carer’

RENOWNED for his fine intellect, mastery of the political put-down and often unyielding personality, Michael Noonan has always been seen as a tough-as-old-boots, old style politician, a man who fights on his terms; somebody who won’t be re-cast by shadowy backroom strategists.

The Michael Noonan that sat down with Pat Kenny on Monday night was not Michael Noonan the politician. He was Michael, the husband, father and carer of an Alzheimer’s patient – albeit a carer who admitted he could afford the private home help that can make the difference between preserving your own sanity and not.

He was a panicked, often helpless husband who quickly learnt that he had to rely on the goodwill of his children, neighbours and wife’s friends when he was away from home. He was a man who found his home life and imagined future unravelling when at the age of 54, his wife had begun to develop the signs of early onset Alzheimer’s.

He also honestly held himself up as a former health minister who due to lack of experience had never truly understood the lonely and overbearing load of the carer or the plight of the elderly.

His description of a typical Saturday afternoon in the Noonan’s Limerick home just reminded you of any couple in their 50s – pottering around, reading the papers, catching up on household jobs, drinking endless cups of tea – except that panic could descend within seconds.

“You’d be there at four o’clock in the afternoon of a Saturday and you’d say ‘Would you like a cup of tea?’. You’d go out into the kitchen and you’d come back in with the cup of tea and she’d be gone. So you’d search the house but she’s gone. And so you’d go out the door but you can’t find her. The neighbours were very good. You’d get a neighbour to go in one direction and you the other way. In an urban area you know, as soon as you go around the corner, you could go any number of ways and you could be a long way in five minutes ...” he trailed off.

“When you’d catch up with her, she could be agitated and it would be impossible at times to get her into a car. You might have to park up and walk with her maybe for a mile, two miles until she got it out of her system, until she calmed down, or until you could walk her around in a circle back home.”

At a number of stages throughout the interview, Michael became emotional but it was when describing the childlike nature of Florence’s later-stage Alzheimer’s that it all became too much. “Getting her to bed at night was a huge difficulty, at one phase. 12 o’clock would come, no bed, one o’clock, two o’clock, three o’clock, so you’d end up putting her in the car and, like she was a child, driving her around for miles.”

That Michael loves his wife was indisputable as was his appreciation for his children and the Alzheimer’s Society.

While Florence’s (or Flor as she was known) illness may have come as a surprise to many, it was silently acknowledged in Limerick. A well-regarded woman, Flor taught at St Paul’s National School in Dooradoyle and is described as someone who never forgot her past pupils. 12 years after the initial signs of Alzheimer’s appeared, she is now in a nursing home in Askeaton, aged just 66.

Flor’s mother died from Alzheimer’s and Flor herself had always feared she would inherit the disease. And so when she began to forget her keys a lot, leave her handbag at home and forgot where she parked the car, the family were “on alert”.

The early stages of Alzheimer’s are notoriously hard to diagnose though and by the time the brain is showing signs of damage, it is often well established.

Fine Gael was nearly wiped out in the 2002 general election when Michael Noonan was leader. Unbeknownst to us, throughout the campaign his wife’s health was deteriorating.

She still canvassed night after night for him, “looking after the thing in Limerick”, as he pressed flesh around the country.

It was clear from the Frontline interview that Michael Noonan, despite being a former minister for health and his near 30-year reign as a Limerick East TD, was as vulnerable as any other man in face of his wife’s demise. Loving her, he didn’t want to deprive her of her final freedoms until he absolutely had to.

“The big problem was, I made a lot of mistakes you know. You learn on the job. The principal mistake was never acting until another crisis came. One of them was the wandering. We wanted to keep her independent as long as we could and so we didn’t get locks for the door which was the obvious thing to do. You see, we didn’t want to turn her a kind of prisoner in her own house.”

The image of that interview that will remain with many people is of Michael showering his increasingly helpless wife. He told viewers how after washing her, he would put the shower head back on its holder and let her remain under the water as she “liked warm water on her body”. On one particular morning, she was relaxing under the water when she suddenly went into a seizure, falling through the shower door, collapsing on the bathroom floor where she remained unconscious for three-quarters of an hour.

This had never happened before and his personal sense of utter helplessness was deeply moving. However, after two more such seizures in less than two months, the Noonan family had to face up to putting Flor in a nursing home.

Flor Noonan is now in the most advanced stage of Alzheimer’s and can’t get out of bed.

Neither can she communicate beyond stringing random words together. Sometimes she recognises her family. Sometimes not. A smile from her makes the family’s day as recognition is now rare and fleeting.

Despite all of this, Michael spoke of his family “being out the other end” as they have passed on her caring to the professionals. A burden has been lifted.

He said he will never forget the loneliness and enormous responsibility of caring for his wife from Saturday afternoon to Monday morning when the home help would call again.

However, for many carers, this loneliness and responsibility is 24/7, 365 days a year as they are wholly reliant on the HSE for what is often scraps of home help. Michael Noonan, as he is very aware, is one of the lucky ones. He could hand over the caring to private home helps, private respite and his adult children when he was away from home at the Dáil. Many other carers have no choice but to stub out their careers, their social lives, their whole life when a relative becomes seriously ill.

And yet, there isn’t a person who couldn’t have been moved by that interview. It wasn’t done for political gain. It was a burden that a public figure had carried privately for 12 years and when after watching Primetime’s exposé on Alzheimer’s care last Monday week, it became a story he felt compelled to tell.

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