Blog 1: AND SO IT BEGINS
Vascular dementia is a dementia that occurs because of mini and/or major strokes damaging the brain. It is an insidious disease that steals capabilities, memory and personality. Over the last years, it crept up on my husband, Bill, like the proverbial thief in the night and I am writing his story, not only for the sake of our family history, or for the information of the wider community but because, when I researched the word dementia nobody told me exactly how it would be for Bill and me. They said there would be memory loss and I thought that meant that Bill would misplace his car keys. They said there would be loss of language and I thought that meant that he would not remember peoples’ names. They said that there would be restlessness and I imagined Bill tossing and turning in bed at night.
How wrong can you be?
My name is Fay and this is Bill’s story.
The first time that I had any inkling that Bill might have a problem was at the end of 2005 when he said to me:
“ I think that you should leave work. I’m losing it.”
I was completely taken aback and retorted, somewhat tersely:
“ What a lot of garbage! There’s nothing wrong with you. You tell me when I have to go back to work and now you’re telling me when I should stop. Well, I’m not stopping. I’m at the top of my game and I’m going to work for one more year.”
And I did and, in the end, whether I worked or not didn’t make any difference.
In the year 2005, you see, the year when this story begins, there was, to my mind, no indication, until the conversation recorded above, that there was anything amiss. Bill was a sixty-six year old retiree. He was healthy, happy and enthusiastic about life. He had maintained a happy marriage for forty-three years, had reared three successful sons, had spent thirty years teaching the skills of carpentry to teenagers in both Papua New Guinea and Australia, had built a house and renovated others, held a Master of Education Degree, had been an active member of various clubs and moved within a wide circle of relatives and friends. He was a quiet achiever, a man of gentle wit and humour and one who was both liked and loved. For most of the year 2005, I had no clue that Bill was on the brink of something dire.
Sharon Hendy-Moman
Already I can feel the love and respect that surrounded Bill life. I’m compelled to read more, Fay. Thank you for sharing this important story. What a beautiful way to honour Bill and to help others. Sharon xo
Fay
Hello Sharon,
Thank you for reading. Your family was a constant support to me over the years of Bill’s deterioration and still is now, a year after his death. So it’s no surprise to me to find you there, helping to bring the blog to life ….. making the effort. Many thanks, Fay
David
In terms of Sharon’s comment that it might help others, perhaps Dad’s generation and maybe even some of my generation were quite reserved about men’s health issues and certainly a lot less likely to say something when it might be wrong. On reflection if Dad was saying “I’m losing it” he was realising something was going wrong. Through platforms such as My Dementia Journey I would like to think we are better placed now as a society to be more open and understanding about such matters and possibly allow earlier intervention and prevention.
Fay
So true, David. And I wonder whether things might have been different if Bill had been diagnosed early on with dementia rather than Aphasia. I know some people who went to dementia classes ….. “Living with Dementia” ……
rather than speech therapy. They followed a different course to us …. were encouraged to buy a dog, learn tricks to help the memory etc. But, in the end, when I look back, I can see with Bill that it didn’t matter which course was followed, that damned disease was just going to keep chomping on.
But your comment is valid from the point of view that new drugs and new treatments and new trials are coming on board yearly and nobody is going to offer them to you if you don’t speak up and ask for them. There’s a small chance things may have been different if I had taken seriously Bill’s utterance: “I’m losing it”. Fay
Suzi Carson
He really was a quiet achiever. I had a great respect for Bill growing up.
S
Fay
Yes, we were all lucky to know Bill, Suzi, weren’t we? And lucky to have him for so many years. He was so competent and so eager to learn and so very much not a person who showed any signs of having dementia. How could it be that eventually it was his brain that took him? It just beats me. Thank you for taking the trouble to comment, Suzi. I can always rely on your family for support, Fay
Louise
Fay, your eldest son (my husband) is a genetic stamp and got all those wonderful values from Bill … Louise x
Fay
And I notice, Louise, that David is doing everything that he can to ensure that he does not end up the same way as Bill, taking care of his diet, exercise, temperament, etc, etc. Having long ago given up smoking. All positive, which is good.
Thanks, Louise, Fay
Dave
Suzi – he was a quiet achiever. Ian summed it up well when he said ‘silently driven’.
Sonia Hendy
I shared your feelings about retirement Fay, you are at your peak and if you enjoy your job it’s a hard step to take. Bill was a silent achiever and a good friend.
Fay
I suppose, Sonia, that had I known what was in store, I would have retired then when he asked me to. But I didn’t know that Bill only had six years to live. I honestly thought that he was invincible ….. that he would beat anything …. live till he was 100. We never know, do we?
Elizabeth
I have recently been concerned that I am losing mental function which is what led me to this blog. I looked at some of the MMSE (the mini-mental state exam) and thought that by the time you lose the functioning tested for there, you are very far gone. Are there other tests that test for more subtle changes in mental functioning? I would also be interested in why your husband thought at the beginning that he was “losing it” Did you ask him? I am looking forward to reading the rest of this blog.
Fay
How lovely to hear from you, Elizabeth, and how I wish that I had been more sympathetic when Bill told me he was “losing it”. I wish I’d asked: “What makes you say that?” rather than brushing him off with a brusque “What a lot of garbage!” Alas, I didn’t. But, as I rack my memory, I remember that, way back in the early nineties, when we had “slide nights” (all our photos were on slides in those days) Bill, who was conducting the show, would often demand: “What’s the name of that place, Fay?” He would ask that question much more than you would expect any ordinary person to do so. That was ten years before we had any clue that Bill was heading down the path of dementia.
As well, when he was building our house in 1995, he came home one night, quite bemused. “I don’t believe I did that!” he said. “I argued with the bathroom fitters that I didn’t want free-standing vanities and then I realised that I had actually ordered free-standing.” “Don’t we all do things like that?” I asked him. But he wasn’t convinced. I think he felt then that something was going wrong ….. again, ten years before.
The one thing that I wish that I had done, though, looking back now, is this: I do wish that I had taken Bill then, when he uttered those words, “I’m losing it”, to a neurologist or a geriatrician. I don’t know that it would have helped ….. in fact I probably believe that it wouldn’t have …… but I wish I had done it.
Keep reading, Elizabeth. Your query is what this blog is all about.
Harold and Nola
Recommended: a well set out and easy read, easy enough for anyone to follow through.
Fay
I couldn’t write it now, Nola. But after Bill’s death, it was all so vivid.