Blog 24: The Man in the Mirror (Pt 2)

There is a thin line between sanity and insanity, so they say.  Yet, I never did think of Bill as being insane.  To me, it seemed that his brain had just “slipped” a bit, had teetered across that thin line for a time and I could, thankfully, mostly understand why he was behaving as he was. If you take a look at this second picture of those glass gates, for example, you can just see me, in pink skivvy, reflected in the glass.

Blog 024 Image 1

And you can see how difficult it is to tell, looking at the photo, whether I am a reflection or an actual part of the front-yard scene inside the fence. It is true that Bill, at that stage, was way beyond debating whether it was reflection or reality, but you can see how tricky it must be for someone who no longer has the discernment. Bill just saw what he saw …. the person coming to say “Hello!” …. and he acted the way he did because, to him, those people were real.

It was easy for me, then, to comprehend why Bill was talking to his reflection.

It was not so easy, however, to get my head around the fact that he now preferred to urinate, not in the toilet bowl any more, but in the corner of the garage. I knew that it was no good scolding him and that I just had to play it through but I also knew that there had to be a good reason for the changed behaviour.

It was a month or more before I found out why it was happening. The discovery came about because I noticed that Bill was gently tug-tug-tugging at the leg of his shorts. I took him by the hand and led him to the door of the bathroom.

“Do you want to go to the toilet?” I asked.

We were standing at the door looking at this scene:

Blog 024 Image 2

reality                     reflection

“Yes,” he said.  “I do want to go to the toilet. But, which one do I go to?”

And he started walking toward the reflection.

…………………………

Now, you would think that my understanding of why the problem occurred would lead naturally to a solution.  I have, in fact, a little book, a handbook for carers of clients with dementia, which indicates that a solution can be found. The carer, it urges, who finds their client urinating in the cupboard, should take the client to the toilet bowl and say, gently but firmly:

“Now, Fred, you mustn’t wee in the cupboard. You need to wee in the toilet here. Do you understand, Fred? That’s what you must do from now on.”

Well, that may have been all right for Fred. Maybe he had a different type of dementia. But, for Bill, as we’ve seen before, it was not ever that simple. Bill might remember those instructions for a couple of days, but after that, those two toilets were always going to cause him trouble and send him scurrying for the corner of the garage.

It was the same result when I hung a queen-sized sheet over that bathroom mirror. Bill might think for a day or two that the mirror, and that other toilet, weren’t there. But, in the end, he always knew that, if you lifted that sheet, even just a little, you would see them.

Over that time, towards the end of 2010, it happened as it often does when you are toilet training a two-year-old. If I got lucky, I could read the signs and get Bill to the toilet before he made it to the garage.  Mostly, however, the problem did not cease to be a problem until we managed to get Bill into incontinence underwear months later. But that, as they say, is another story.

  1. Adele

    Thank you Fay for continuing to share Bill’s and your journey. I personally await each new blog post with anticipation. Through reading this I am learning so much and it is helping my family. I am sure you are helping many other families in the same way.

    Thank you again

    Adele

    April 23rd, 2013 // Reply
    • Fay

      Hello Adele,
      Thank you for your encouraging words. Your comment is the reason I’m blogging this story …… that people might understand a little of what is happening to that person who is suffering from dementia. Your words give me reason tp continue with the blogging. Thank you.

      May 1st, 2013 // Reply
  2. Harold and Nola

    We don’t know how to comment here except to say that with a child in one way this is easier for we don’t expect that child to have any life experience behind him/her. However, with an adult, who has had life experience over and beyond sixty years we expect them to literally ‘know’ these things. How hard it must’ve been to put the full-grown man back into childhood, but at least we know now what to expect. Nola and Harold.

    April 23rd, 2013 // Reply
    • Fay

      Hello Nola and Harold,
      Thank you for your ongoing comments which help to keep the blogging purposeful. I suppose Bill’s decline, in a way, was no different to that of someone with macular degeneration, for example, or acute arthritis. You just have to work with the person to help him/her have the best life possible. But it’s harder with dementia because we don’t like to say to the doctor: “He wees in the garage.” And, believe me, the doctor doesn’t want to hear it. There is, I think, still an embarrassment there, when we’re dealing with people with dementia, that stops us from understanding that it is just a decline ….. like any other physical or mental decline ….. and we can work with it.

      May 1st, 2013 // Reply
  3. Charmaine Zuidam

    Probably a good thing he was not aware this was happening to him. A terrible drawn out way for life to end. Love you Fay.

    May 2nd, 2013 // Reply
    • Fay

      I remember when Bill first started to become incontinent. And I say: “first started …. ” because Bill didn’t become
      incontinent over night. The whole process of becoming incontinent took over a year, I think. But when it first started, it happened that it began with him wetting the bed at night. And Bill was well aware of what was happening then and was absolutely appalled and disgusted with himself.

      May 9th, 2013 // Reply
  4. Rowena

    Why was there so little help and support for you? I cannot understand how health services in Australia offer so few resources to people in need in their homes. Shouldn’t assistance be at it’s most intense when a sufferer is at home being cared for by a family member? Wouldn’t this be a better way of improving quality of life for the sufferer and the carer? Thank you for such a concrete example of the reality of the daily life of a carer. Rowena

    May 6th, 2013 // Reply
    • Fay

      I was getting some help in those days, Rowena. I was given help to keep Bill clean and, once a week a carer took him for a drive. And, as Bill became sicker, I was given more help. But it’s never enough help, of course, and, apart from the basic speech therapy that we did in the early days, there was never any effort made to help Bill recover lost mental powers. Do they care for people with dementia differently in France and Belgium?

      I have to say, though, that in Australia, as of yesterday, dementia patients should receive dramatically improved care because the Federal Government, with the assistance of the States (though N.T. and W.A. have not yet signed) are setting up a National Disability Insurance Scheme. It will see a lot more money being spent on those who, being disabled, need it. I’m not sure that it will see greater assistance given to those with dementia, but I hope it will.

      May 9th, 2013 // Reply

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