Blog 19: Dancing with Dementia
By January 2010, I had to admit that Bill’s problem had to be more than aphasia. As you have seen, it was not just the inability to tell time that was worrying him. It was loss of sense of time. It was not just the loss of language, literacy and numeracy that was the concern. It was the brain slips. It had to be more than aphasia. It had to be loss of intelligence. Though we did not receive a medical diagnosis until June 2010, I knew it was dementia. I had read that a third of the people who have aphasia sink into dementia. I believed, by this time, that Bill was one of them.
Yet, in spite of all that, we still went on living a reasonably purposeful life. We went for daily walks, looked after the house and the garden, socialised with friends and family and watched TV.
Bill, in May 2010, socialising with family and friends
Bill could not keep up with TV talk shows any more, or any show that centred on dialogue but, thanks to Foxtel, he could enjoy watching fishing boats working in the Arctic or golfers putting balls into holes.
It was quite strange, really. There were brain slips and mini-strokes and night walks and fits of anger and clips over the ear, but alongside it all, there was still this man who was the same kindly, dignified person he’d always been. An example of what I’m talking about …. his courtesy, his concern ….. can be seen in the following phone conversation, which I recorded in April, 2010.
Bill had been hospitalised for severe constipation and ulcers in the duodenum and the oesophagus. On the occasion that I am talking about, he had fallen asleep in his hospital bed so, with a friend, I had taken the opportunity to slip away for half an hour. As it happened, however, while we were away, our eldest son David phoned to see how Bill was faring. The call went through reception to Bill’s hospital bed. The phone rang for a while and then Bill picked it up. This was rather brave of him, considering he had not picked up a phone for a year.
“Hello,” he said. David knew it was Bill. He was over-the-moon happy to hear his voice.
“Hi, Dad. It’s David,” he said, joyfully. “How are you?”
“Yes. This is Bill,” Bill answered, rather formally.
“So ……,” David continued, “Is Mum there with you?”
“No. The other bloke is gone with the other fellow,” Bill replied. “But it’s all right here,” he went on, “But, at that other place, it’s not so good.”
“Okay, then,” David rejoined. “I’ll call back later when Mum comes back.”
“Well, Okay. Thank you,” Bill answered. “It’s all good. Thanks for that.”
“Bye, Dad,” David said, cheerily.
“Yep. Yep. See you later,” Bill replied, putting the phone down.
………………
People sometimes asked me how I could do it …. look after a man who was becoming demented. But, for me, it was relatively easy because firstly, I loved him, and secondly, I could always manage to see that kind, dignified man within.
Suzielf
At all the gatherings I ever saw him at, I used to chat to Bill and also, with or without words that made open sense, his tone and inflection made sense, and occasional inferences made sense…. It was still Bill who I remembered even as a child. A bit strict (!) but a solid smile behind the words, and kind with a gentle good humour.
Fay
You were always very good to Bill, Suzi and what you described was the essence of the man and always remained the essence until the end. But, in all fairness to all those who are caring for a dementia patient at the moment, I should add that, as the disease progressed, Bill began to experience many attacks of anger and aggression. He was not like Glad, who starred in Sunday night’s “Sixty Minutes” Alzheimer’s Segment (Ch. 9, 7:30pm, 10/03/2013). Eight years into the dementia, she was still a sweet personality, apparently 24 hours a day. Bill was, at heart, the quintessential gentleman, but as the disease robbed him of his ability to comprehend or imagine the future, another side to him emerged ….. one that I will tell you all about in due course.
Harold and Nola
Yes, along with those other words describing Bill, ‘Dignified’ has to be one of the best.