When Bill hid the mail, he didn’t do it to cause trouble or inconvenience.  He did it because he wanted, desperately, to hang on to the intelligent, purposeful life that he had had before dementia.  He knew that, when the postman came and went, someone from the house would always go out and bring the letters in, but the truth was, once Bill had the letters indoors, he just didn’t know what to do with them any more.  From my demeanour, he knew that they were important and worth controlling and he opted to hide them because he also knew that, if he gave them over to me, he would lose that control and the accompanying feeling that he was still leading a life full of meaning.

It was a bitter-sweet triumph to me, then, when, maybe six months later, Bill stopped going out to get the mail altogether.  It was sweet because I no longer had that maddening, daily worry of “Where, oh where, is the mail?” But it was bitter because I knew it meant that Bill’s brain had deteriorated further and that it no longer remembered that bringing in the mail was an important thing to do every weekday.

If you go to the internet and type in the address:  http://campaign.fightdementia.org.au   you will come across Kate’s Story.

In describing how her early on-set dementia is affecting her, Kate says:

The feeling that my life is slipping away from me is almost tangible …. It feels as if my soul is being sucked out, little by little, as my world disappears.

Though he was never able to verbalise it, I’m sure that that is how Bill felt during 2010 and 2011 when so much cognition was lost. By the end of 2010, for example, he could no longer read or write, sign his name, make conversation, interpret maps and calendars, measure, use money or work with numbers.  In those days, though, he knew what was going on and worked with me to try, unsuccessfully, to stem that destructive flow. But, as time went on, and loss tumbled over loss, and less and less brain was functioning, Bill seemed to become, mercifully, less aware and more accepting of the ongoing deterioration.

The losses still occurred and you could track them as they happened. Take, for example, the matter of wiping up. After every meal, for a few years and right up until the end of 2010, Bill had religiously wiped up the dishes and put them away. Then, little by little, the ability to do that task was lost.  It started off with him putting the knives and forks in the wrong section of the drawer.  Then he forgot how to put anything away, then he would pick up the tea towel but would not know what to do with it and, finally, he ceased making efforts to wipe up any more.  At that time, he just put the tea towel down and walked away from the sink.

Occasionally, with these losses, there would be what seemed like a spark and Bill would regain again, fleetingly, the lost ability.  This happened once when we were lopping branches in the garden.  The loss of that ability had gone through the usual stages of Bill lopping the branches off by himself, me being with him in the garden guiding him, me starting him off so that he could complete the task and then me doing the job with him standing by.

That’s how it was one day towards the end of 2010.  I was wielding the saw with Bill observing when, quite out of the blue, he exclaimed:

“Oh!  I’m sorry.  Can I help you?”

And he took the saw, tentatively, and managed, with some difficulty, to lop off that branch.  But that was the last time he ever made a cut with a saw.

Eventually, Bill was unable to do any of those tasks that we do daily around the house.  Hanging out the washing, using the vacuum cleaner and setting the table, for example, were all competencies that eluded him.  When he began to lose the ability to bring in the garbage bins, he brought the unemptied bin in through our front door and, when I looked, it wasn’t even our bin. It was next-door’s bin.

But, all the time that his life was slipping away, he kept doing his best to stay with us in our world. An example of him striving to stay in our world occurred one night when we were about to say Grace before our night-time meal.  This was a custom that Bill had observed since childhood.  At the time that I am talking about, Bill hadn’t been able to say Grace for over a year or more.  But, as we were debating who should say it on this particular night Bill, to our astonishment, leapt up and, with great dignity, started saying the words. But, instead of saying:

For what we are about to receive

The Lord make us truly thankful, 

he intoned, in a loud, preacher-like voice:

For what we are about to receive….. (long pause …. thinking)

GEORGE!!!

I’m sure that the Good Lord understood Bill’s good intentions and trust that He has forgiven us for our titterings.

……………………………….

How much, though, did Bill understand that these losses were all part and parcel of his life “slipping away?”

Well, I would have to say that, most of the time, Bill, in those latter days, didn’t understand what was happening to him.

Yet, there were occasions when I know he knew. When the Jehovah’s Witnesses came to our door, for example, as they regularly did throughout 2010, Bill would greet them warmly and would explain his condition to them by saying:

“My brain ……….”,  while twirling his index finger around in circles next to his temple.

I think, at those times, that he knew that things were awry and that, in his own way, he was asking them for help.

Perhaps he thought that their God might be able to help him.

…………………………………

There were also those crying fits, which I talked about in BLOG 16, those times when he would dissolve into tears and sob:

“Can somebody help me?”  “I wish I could talk to people.”

“I want to go home.”

Those statements indicated to me that Bill had some idea of what was happening to him.

…………………………………..

But, mostly, what makes me believe that Bill knew, to some degree, that his life was slipping away, was this:  Throughout 2011, when so many skills and competencies had deserted him, he would, on rare occasions, stand in the middle of our family room and call out at the top of his voice …..

“BILL   JORDAN!!!     BILL   JORDAN!!!  ……

as if he was trying desperately, with all of his might, not to forget who he was.