Columnist Margaret E Ward discusses when she first realised her father was not well, his dementia and finding ways to cope

Have your holidays left you wondering if all is as it seems? The season is a time for long-distance travel, bittersweet reunions, long chats and lots of observation. In the year or so since you’ve been separated from family and friends, you might have noticed the things that changed: your brother’s thinning hair, your niece’s new baby, your wrinkles and everyone’s increasing age.

If you’re like me, you might also have wondered if you’ll ever see some of them again. Was this holiday the last time you’ll hug and talk to your ageing parents or dear friend?

Realising their fragility, and perhaps your own, marks the start of an awareness of our own mortality and it’s not pretty – some of us go quickly, while others just fade away.

About 12 years ago, I visited my father in New York during the winter holidays and knew something was different about him. As we were leaving the local train station for the return flight home, I became very upset. My husband and I were both puzzled. It had been a good visit but it was harder than normal for me to leave. “Dad’s not well,” I said. “I just feel it. Something’s not right.”

Many of us have had this strange experience. The Dad I had known was a lively, generous man who was fond of jokes, stories and entertaining. He was always the centre of attention and when he threw a party everything was the best, the biggest, the brightest.

Enter the shadow
I didn’t put my finger on it that day but somehow he had faded a little. On the holiday, we’d sat at the big table discussing our plans for the coming year and I looked at him. He was a quiet shadow figure; a bit blurred around the edges. He seemed to be slowly, almost imperceptibly, fading away.

It made no logical sense. Aged 60, he was still working in a big Wall Street firm and loving life as a government bond trader and senior manager. But the change that I sensed in him wasn’t just the slowing down that we all experience with age. He was quieter and far more uncertain of his steps and memories.

I questioned him but was told everything was fine and to stop worrying. Within months, he was diagnosed with diabetes and then he told us that he had not been able to feel his legs for a couple of years. Typical Irish man! He had suffered in silence rather than admit to some health ‘weakness’.

He packed in his beloved job and began visiting specialists for his legs, eyes, diabetes and memory loss. Any time the memory issue was pointed out, he became angry and said there was nothing wrong with him. There was no way he would go to a neurologist – they were head shrinkers!

Time passed and a retirement that should have equalled golf and days of leisure became a dark and anxious time. Visits to the golf course lengthened as he struggled to find his way home from a course he had used for more than 20 years. Some days, in his confusion, he pulled to the side of the road to calm his anxiety and pounding heart. Where was he? Where had he come from? What on earth was he doing?

Since he refuses to see a neurologist, there has been no diagnosis bar some kind of diabetes-related dementia or possibly Alzheimer’s. My stepmother has gone through the five stages of grief: denial, anger, bargaining, depression and finally acceptance. It’s exhausting for her and sad for all of us to be so far away.

Learning to cope
How do we cope with our parents’ frailty and the abyss of personal mortality? Everyone is different but I think laughter soothes the soul. Life isn’t fair but it’s the way we cope with it that helps us survive and thrive. Carers need to laugh when they can or they will quite literally cry themselves sick.

A friend recently told me a story about Alzheimer’s care and it might make you smile.

A neighbour had lived in the American mid-west when he was growing up, the youngest of three boys. Their grandmother lived with them and she was diagnosed with Alzheimer’s while they were in their teens.

To the delight of their parents, Tom’s oldest brother offered to take grandma out for a drive each Friday afternoon when they got back from school. The outing provided Tom’s parent’s with some needed down time from the tireless care and monitoring that their grandmother required. Each Friday, the parents would watch from the window as the oldest boy would walk their grandmother to their station wagon. He opened the door for her, sat her down in the front passenger seat and strapped her seatbelt. His younger brothers took their seats in the back.

It was a lovely family scene.

On these trips, the teenagers would drive their grandmother to the local Beer Barn, a drive-thru grocery establishment. The station wagon would pull up to the window and the 19-year-old brother would tell the clerk: “She’ll have a case of Coors Light” and nod to his smiling grandmother. The drinking age was 21. The clerk would look at her through the driver’s window and conclude that she was clearly of age. He would order a worker to load a case of Coors Light into the back of the station wagon and would take the money from the oldest brother.

Tom said they would bury the beer in the snow next to their basement door when they got home. Grandma always seemed to enjoy the ride and she never recalled enough detail about where they went to expose the caper.

You have to smile. Dementia is not funny – and Dad certainly isn’t getting any better – but laughter certainly brings us all together in a positive, life-affirming way.

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