When Dad walked into the night

When Dad stayed with me before his 60th birthday he couldn’t find the toilet in my one-bedroom flat. I would show him where it was and half an hour later he would be looking for it again and heading out the front door. When I told him what music we were listening to, he would pause and then ask again, “So, what music are we listening to?” The information literally went in one ear and then out the other.

This was in 1996. But it was not until Christmas the following year when he went missing and then was found by the police and taken to the Korumburra police station in the back of a divvy van that I accepted that something was wrong. Until that time I managed to ignore every bit of evidence that he was losing his mind.

But trying to answer the question “when did it start?” is impossible. According to Alzheimer’s Australia “memory loss, confusion, personality change, apathy and withdrawal and the loss of ability to perform everyday tasks…are common symptoms of dementia…” (“Diagnosing Dementia” Help Sheet at http://www.alzheimers.org.au/content.cfm?infopageid=326#sis) If a sharp and cheerful person suddenly becomes a confused grump we know something is up. But my Dad was not the happiest of people. His glass was often half-empty. He also put himself – and others – down a lot, and he’d complained about memory loss for years. When his memory loss and grumpiness became real problems I dismissed it. I thought he was forgetting things and turning on those around him because it suited him to do so, not because there was something really wrong with him.

Others, especially my mum, were wiser. There had been signs eight years earlier that Dad was losing it. When he and Mum went overseas for three months, just before he retired, she was struck at how he seemed to have lost his initiative. From being the planner and the leader he was suddenly a bewildered man who said “what do we do now?” Mum took up the reins, as she had to. She made plans and read timetables and booked tickets and accommodation.

Upon their return the bad signs continued. They bought a small farm in North East Victoria. Dad had always been very practical and able to make and fix things but now he started to slip. He tried to build a bird bath but it remained nothing more than a cylinder of rocks and cement. He got terribly confused with electrical fencing so that it never worked. He got lost on the country roads. Mum wrote to me and said his memory loss was getting bad and she was worried but he wouldn’t talk to anyone about it. I refused to believe anything was wrong.

At my brother’s wedding he froze in the middle of his speech and said “this is not nerves, it’s just something that happens to me nowadays.” Again my Mum saved the day with a dazzling speech, the sort of thing she wouldn’t have dreamed of doing five years earlier. She was doing a lot of stuff she wouldn’t have dreamed of doing before.

And then there was the visit to my flat where he couldn’t find the toilet. Clearly his short-term memory was gone and his behaviour had changed. I had to look after him as if he were a small child. Yet I enjoyed this. My often-grumpy Dad was now very amiable. We chatted a lot and went to the pub and the pictures as a loving father and son. Only I was now the grown up and he’d become a little boy. I ought to have realized that he was ill, but instead I just marveled at the novelty of having to look after him.

These years were terrible for Mum. She watched the man she loved changing completely. Routine tasks confounded him and he would cry out “why can’t I do this?” His skills were disappearing but he was still mindful enough to know they were disappearing. For the sufferer of dementia this is surely the worst phase.

He was sleeping badly and would wake in the middle of the night and wonder where he was. Mum had become a 24-hour carer and Dad had not even been diagnosed yet. Eventually, after the police had picked him up at Christmas in 1997, he got to a doctor and received a blunt diagnosis. He had Alzheimer’s disease, which accounts for over half the cases of dementia. There was little anyone could do but manage his decline.

Mum was now doing everything that had been Dad’s job. She had to manage their money and their farm. She had to scrape the money together to buy a new, second-hand car. She wrote to us that Dad had said the new car did not concern him because “I’m only fit for the scrapheap.”

Mum made some tough decisions. She sold their livestock. She leased most of the farm to a neighbour. She arranged for some respite for Dad. At first this was for a few hours, then a whole day, then overnight care. Later he would go into care for a week or more at a time. This was a great relief for Mum because when Dad was at home there was no rest. He was up and down all night and then up for good very early in the morning. He was usually anxious and it was very had to reassure him.

Mum had a car crash at the start of 2000. With a cracked sternum and broken ribs she and Dad were discharged from hospital the same day. Now she was a full-time carer with a fractured rib cage! The children rallied and Dad went into respite again. He barely knew what was going on. He asked Mum once how long she had been doing this job – of looking after him – and how much she was paid for it. But he was alarmingly fit. I walked with him over the paddocks and there was no hill too steep for him.

Later that year Dad was in respite again and a permanent place came up. Mum rang around and we all agreed. It was time for full-time care. Mum knew plenty of people – mostly women – who would never do this. While they drew breath they would care for their partners at home, through violent mood swings, complete helplessness and incontinence. To what end? we wondered. We wanted our Mum alive and enjoying life.

Dad was in care for seven years before he died. He was very well looked after. For his last five years he couldn’t walk and could only say the odd word or two. He seemed well beyond the agonizing phase of being aware that something terrible had happened to him.

Doctors say that keeping physically fit may be one way to lessen the risk of Alzheimer’s Disease. They also recommend a low-cholesterol diet with plenty of anti-oxidants. On this score my Dad had done everything by the book. He was very fit and ate very well. Another risk factor though, is being socially isolated. Dad was never very social and he became more withdrawn as he approached retirement. But nobody knows whether this withdrawal was a symptom or a cause of his illness.

The one thing we know is that we should look after ourselves and each other. We should keep in touch with friends and family. We should eat well and do crosswords and try and remember things – like phone numbers – even if we don’t need to. If the worst thing happens and we get dementia we will know we did all we could to prevent it. And we’ll have friends along for the journey.