Blog 18: Sense of Time
It was not the problem of being unable to tell time that caused us stress. Though that inability was disorienting and difficult for Bill, I was with Bill most of the time in those days and I could tell time for him. What was a big problem, though, was the fact that, along with the loss of his ability to tell time, came the loss of his “sense of time”. You and I, if we wake in the night after a few hours of sleep, will look at the clock and say:
“Oh, good! It’s only 2am. I’ll turn over and get a few more hours.”
Bill could no longer do that. When he woke in the night, there was nothing by the side of the bed, or inside his head, to tell him what time it was or what he should be doing. Over 2009, I was able to say to him:
“It’s still night. Go back to sleep!” and he would hear me and settle down again.
By 2010, however, he was no longer taking any notice of my urgings. I think that an element of brain slip had started to enter the scenario then. He was waking, but waking up in his own world, not my world, so he was not hearing my words at all. For quite some time, during that year, Bill would wake every night at 2 or 3am, get himself up and “go to work.” He wasn’t going to work, of course, but he was always wide awake and busy, either in our dressing room, moving coat hangers and clothes, or downstairs, pushing chairs and bundling newspapers. I used to save the newspapers for him so that he would have something to bundle. This business of Bill waking and working in the middle of the night went on for the whole of that year and even longer, until sleeping tablets and the weakening of his physique eased the pain for both of us.
Waking in the night wasn’t the only “sense of time” problem that we battled in 2010. In that year, Bill started to suffer from “Sundowners’ Syndrome”. Because he could no longer tell the time, his brain relied on the strength of the daylight to help him understand where he was in time during the day. As the sun set each day, then, like the chooks in the henhouse, he would want to have his dinner and go to bed. There was anxiousness about him, as if he felt that something dire would happen if he didn’t get to bed immediately. If dinner was delayed at all, he would become cranky and I could, on occasions, be clipped over the head with an open hand, just as a reminder that I should be moving more quickly. It would be worse on overcast or rainy days. I came to dread rainy days.
As well, over 2010, “sense of time” also became a big worry for us every Tuesday. Tuesday night was the night that Bill attended his Rotary Club meeting and for a month or so, I would tend to alert him to the fact that this was the case by mentioning it after lunch. Within a flash, he would be upstairs, dressed and ready to go, all at 2pm. The trouble was, we didn’t need to be there until six. Of course, it didn’t matter if Bill sat around in his good clothes for a few hours. That was not the problem. The difficulty lay in the fact that he did not understand that it was not yet time to leave.
“We’ve got to go!” he would say, anxiously. “Come on! We’ll be late!”
And it was still only three o’clock!
“Hurry up! Hurry up!” he’d demand, getting angry, and I can still hear me trying to explain to him that it wasn’t time to go, that it was still far too early to leave.
It was so hard trying to hold him back.
After a while, it was like don’t mention the war, I learnt not to say the word Rotary until 5pm.
Dave
Rainy days, does anyone really like them? Been housebound here in Sydney for days and don’t think it is any different in Brisbane. I could see how “Sundowner’s Syndrome” might happen even when the time is known.
As an aside, I am also learning to only say certain words after 5:00 pm … words like Gin and Tonic.
Fay
Yes, David, up here in Brisbane, exactly one year after Bill died, we’ve all got Sundowners. Some call it “Cabin Fever” but it’s the same thing, I assure you. When will this rain let up?
Louise
Sometimes I wish life was more like Bill’s here in relation to time! Imagine a world without any sense of time!? We are all so time poor these days and so very short-term focussed! Always in a rush….such short attention spans….funny that I’m married to a marvelous man who’s so anal about being on time!
Fay
It runs in the family, Louise. Even before dementia, Bill never liked to be late …… and, as for holding him up while you got your hair “right”, forget it! As I remember it, too, Bill was mostly first to arrive at work, both when he was working in Vocational Centres and Tech Colleges in PNG and while he was working for TAFE here in Australia. They say that character traits that a person possesses before dementia are often exaggerated as the disease progresses. Maybe that was one of the reasons that loss of “sense of time” caused Bill such torment. His descendants should take note!
Juanita Laird
I, too, am married to a man who hates to be late. He also is getting cranky about this awful weather!
It must have been frustrating for Bill because, if I remember correctly, he liked doing things at certain times and doing them perfectly. Hence when he awoke he’d want to do those jobs or he might be late.
Fay
I suppose, Juanita, that our urge to be on time is in our culture, isn’t it? That is, as opposed to the cultures of native peoples, for example. From the time we’re young, we’re dropped off at Pre-schools and care centres before time so that the parent can make it to work “on time”. Then, like Pavlov’s dogs, we wait for the bell to ring before we eat, or go to the toilet, or take a break, or go home. It’s inbred in us and when the demented brain loses the ability to understand our reasons for using time so rigidly ….. e.g., common courtesy, businesses running smoothly ….. the feeling: “I mustn’t be late!” “I must be on time!” becomes demanding and all consuming.
Harold and Nola
And there is a big problem: the not being able to enter another’s ‘world’ or their perception of this world. How often we hear it said: ‘I wish I unsderstood how you feel’, but at the same time are glad, in reality, not to go there. With this dementia thing though, the world view is so out of the normal purview that . . . indeed, word doth fail . . .
Fay
And, the trouble is, the dementia patient believes that the way he thinks is right and, eventually, you give up trying to persuade him otherwise. In the early days, Bill’s brain would slip into that other world and then he’d snap out of it and understand that his thinking had been wrong. But, as time went on, the snapping out became less until the time came when he was almost permanently slipped. That didn’t mean that he couldn’t relate or communicate. But it did mean that you could no longer have a reasonable conversation with him. His thinking was just too skewed.