Blog 16: Recurrence

That was the first time that I had known Bill to have what I called a brain slip.

Since that time, he experienced others but they mostly happened at home and did not cause us too much stress.  On one occasion, for example, he had been a bit cross about something and then had fallen asleep in his recliner chair.  At twelve noon, I woke him up saying:

“Do you want to have some lunch?”

“What’s that?” he asked,

“Well, it’s lunch,” I replied.  “It’s the food you eat in the middle of the day.”

“Where does it come from?” he continued.

“From Woolworths,” I answered, wondering whether I should have said “from the farm.”

Then he eyed the food very suspiciously, moved it around his plate with a fork, took it off his plate and put it on to his place mat ….. and eventually he ate the banana and only the banana.

Later, when I was washing up, he came to his senses, literally, and said:

“Oh, I know what it is now!  Oh, I’m sorry.  I shouldn’t do that to you.”

………………….

Brain slips always followed the same pattern.  They would start off with a fit of anger, the anger would be followed by a deep sleep, and then there would be the awakening into a reality that was not the reality that I was in.

The anger that Bill experienced in Taipei occurred because he did not want to travel any more.  Strangely enough, later bouts of anger often resulted from the fact that he did want to travel. On those occasions, he would rant and rave in order to make me understand that it was urgent that we get in the car to go somewhere.  Because he wouldn’t be able to tell me where he wanted to go, or why, however, I would refuse to go with him and that would result, of course, in more ranting and raving.

Sometimes, though, I twigged that he wanted to go to Sydney for treatment.

“Someone down there might be able to help me,” he would say.

But it was impossible to get him to understand that it was not convenient for me, at the time, to drop everything and travel to Sydney to find that Someone.

At other times, it seemed to me that he wanted to go and talk to Rotary friends who were part of the team that built classrooms in Papua New Guinea.  On one occasion, I got into the car with him and said:

“Drive. Take me where you want to go.”

And he drove to the gates of their houses and then drove me home again.  I think that he wanted to make sure that they didn’t go to Papua New Guinea without him.

Anger.   Sleep.   Awakening.

I have told you about the anger, and you understand, from the Taipei incident that the sleep that Bill would fall into was a deep, often coma-like sleep. Now, I want to tell you about the awakening.  You have seen how he woke in Taipei.  He woke from that sleep and he thought he was in Brisbane and that it was all right for him not to go.  He didn’t want to cause trouble.  He thought that what he was doing was fine.

He said to me, the day after we arrived home:

“But we flew straight from there to here,” meaning straight from Vancouver to Brisbane.

“No!” I said. “We flew from Vancouver to Taiwan and then took a second flight from Taiwan to Brisbane.”

“Oh! That’s not right!” he retorted.

Even then, two days later, his brain was still playing tricks on him and he was striving, with all his might, to straighten it out.

…………………

Over 2010 and 2011, the brain slips became more common and would often see Bill reduced to tears.

“My father died,” he would sob, as if his heart was breaking. “My father died.”

One day, the Blue Nurse witnessed this happening.

“When did Bill’s father die?” the Blue Nurse asked me.

“In 1945,” I answered, “When Bill was five.  His father died a prisoner of war in Sandakan, Borneo.  It was very stressful for the whole family.”

“That would be right,” the Blue Nurse replied. “Dementia is regressive. I think Bill is grieving.”

Blog 016 Image 1

A photo of Bill’s father taken in the early 1940′s before he went to war, never to return.

Later, probably well into 2011, Bill’s mother became the object of his grief, as well.

“My father died,” he would weep, “And then my mother …..”

And later still, it became obvious that he was grieving for himself.

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

“I want to go home.”

Though it was hard living through these times and seeing Bill so distressed, Bill always came out of these turns and got “back to work” again, doing whatever was important to him.  We both learnt to deal with this side of his condition.  We lived through each turn and then went on with living.

  1. Maureen Bassett

    Hi there,
    As we know there are so many that have Alzheimer’s/dementia. It is very difficult as a carer. Lets face it , it would be better that my husband had cancer. people would pop in. there would be so much caring. People run the opposite way.
    Can we fix them? Now they are thinking it may be people who have cardiac problems, or circulation problems. I agree with circulation problems. That blood does not freely run up to the brain. Lack of oxgen that destroys the brain slowly.. that is my theory. We can only care for people with Dementia and be kind to them. Strangly they forget a lot of things but kindness in the now time, they remember. they know who doesn’t care and who does. Give to the alzheimer’s research so many people on this planet have the problem. Cheers for what my thoughs are. ….Maureen.

    February 9th, 2013 // Reply
    • Fay

      Hello Maureen,
      Your comments reflect the reasons why I’m blogging Bill’s story. Many people just do not understand what it is like to be a person living with dementia. They do not understand that, though the person looks all right on the outside, there is torment and turmoil on the inside. And there are those who just don’t want to know about it. Fortunately, there are many others who do.

      I do agree with you that poor circulation could be a contributor to dementia, but Bill was on daily Asprin doses for five years …. surely that should have addressed that problem. As far as I could see, however, it didn’t. That damned disease just kept pushing on. As you suggest, cardiac problems, too, could also be a pre-cursor, the heart and the brain both being part of the cardio-vascular system. But Bill’s heart was mostly strong whenever they tested him.

      As you indicate, though, we need to find an answer to this problem because, at present, all we can do is be kind and give to Alzheimer’s Australia. Thank you for your comments.

      February 10th, 2013 // Reply
  2. Dave

    Is the sleep part of anger, sleep, awakening a realisation the anger bit was not really needed so I’ll now slink away? Sometimes when I get a bit angry it is afterwards that I feel a bit sheepish. Was Dad going through that a bit or was it mostly exhaustion (and frustration)? As an aside, I haven’t been ‘angry’ for a while.

    February 9th, 2013 // Reply
    • Fay

      So glad to hear that, David ….. That you have not been angry for a while …… It’s good for Type A personalities not to get angry. Seriously, though, I believe, in your father’s case, that the fits of anger occurred because of frustration, that the ensuing sleep was the result of exhaustion and that the awakening into another reality happened because Bill’s brain was not working properly. Bill didn’t fall asleep because he was feeling sheepish and a bit ashamed …… he fell asleep because the act of trying to get his message across exhausted him. It’s hard work trying to live in the real world when you have dementia.

      February 10th, 2013 // Reply
  3. Alison Benfer

    Fay, Albert and I have just spent the past couple of hours reading your blog which brought back lots of memories of you and Bill, and has also given us a greater appreciation of what you, Bill and the family have gone through over the past number of years. For a man of Bill’s intelligence, it must have been so, so frustrating. You are an angel for all the support and care you gave him.

    February 15th, 2013 // Reply
    • Fay

      Thank you for commenting, Alison, and I hope Albert is on the mend. Through all the days of Bill’s decline, my job was always made so much easier because of the ongoing support that I had from relatives and friends, not least that that I received from Rotarians. I always knew that, if I needed it, help was only a phone call away. It must be very difficult for carers who do not have similar support. They must find it very hard to carry on without their hearts becoming heavy. In part, I’m writing this story for them …… so that people will know what it is that these carers go through. Please keep listening. There’s much more to this tale.

      February 15th, 2013 // Reply
  4. Sharon Hendy-Moman

    Fay, I cried reading this one.

    February 17th, 2013 // Reply
    • Fay

      Me, too, Sharon …… in part because it brings back the feeling of helplessness and horror that I felt as I watched. You couldn’t comfort him because he was not in our world ……. He was way back there, at the end of 1945, six years old and watching his mother crumple up with grief. From what I saw, those long-time, deeply-buried memories came back to Bill with great force and vividness.

      February 19th, 2013 // Reply
  5. Sonia Hendy

    Hi Fay,

    Glad to see a couple more blogs up. I think we only saw the ‘good’ days of Bill’s illness in the early years. I agree it must have been exhausting trying to converse with us and get his message across.

    Keep the blogs coming. Sonia

    February 18th, 2013 // Reply
    • Fay

      Through it all, I think that Bill was very brave, Sonia. He seldom allowed himself to sink into depression ….. for which I’m truly thankful. I don’t think that I could have kept up if Bill had become permanently sad. But he didn’t. He mostly just kept trying to hang in there and trying to get on with the life that he was now forced to live.

      February 19th, 2013 // Reply
  6. Harold and Nola

    The thing about it all at this time was that Bill still wanted to ‘do’; he still wanted to ‘go’.
    And most definitely all of his grief over his dad, mostly buried for all those years, was surfacing, for the defenses he had built surrounding them had fallen before the onslaught of this dire disease. Bill [not to mention yourself] was waging horrible war against a terrible, ferocious enemy. More tears here.

    March 16th, 2013 // Reply
    • Fay

      You put it so succinctly, Nola. When Bill first started crying for his father, my initial reaction was: “It was 65 years ago. Get over it.” It took me a while to understand that the pain had been buried so deep that it did not affect him until all that time later when the disease broke down the barriers. Of course, there was no help offered from psychologists and psychiatrists in those days, long ago. It was all “stiff upper lip” stuff and “You’re not the only one ….. pull yourself together!”

      March 18th, 2013 // Reply

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