Behind every great idea there is always a good reason for it being created. This is how the book Lost Words came about.

The real thing…
by Denton Cook

When you live with someone who has Alzheimer's, you have to look at the world with slightly different eyes. Nothing is quite as we expect it to be. I soon discovered that when my Mum for no reason got angry or was in a foul mood, if I smiled at her she would smile back and would soon feel better again. Some days the smiling muscles in my face ached from their extended workouts. It was a small price to pay.

It was one of those nights when Mum had woken me up and talked a lot of nonsense. I rubbed the sleep out of my eyes and tried to understand what she was saying. I never really found out what it was all about.

All through my childhood, Mum would get up in the middle of the night and have a cup of something and a sandwich. If I woke up, she’d make me some as well and we’d talk, always with a book or a crossword at the kitchen table. There were many nights we sat there for hours doing one crossword after another. I can remember the first time I could do a clue all on my own. The word was ‘Celsius’. I was probably around twelve years old at the time.

Thinking this felt a bit like old times when Mum insisted on having coffee and a sandwich at three in the morning, I got up and let her get on with it. I did get a bit confused when she asked where I had put the cheese knife. She was holding it at the time. When I told her it was in her hand, she looked at it and said no not that, she wanted a cheese knife.

On the bench in the kitchen was an Ikea catalogue that had arrived in the post the day before. I reached out for it and went to the index and soon found a cheese knife. I showed it to her and it was clearly marked as such. Mum looked at the pictures and found a photo of a can opener and said that was what she wanted.

Soon we had a large spread on the kitchen table. From somewhere she found the obligatory crossword too. Suddenly she remembered the night I had solved the ‘Celsius’ clue. She told me that after that I had done better and better at crosswords and from then on I had refused to do the kid’s ones. She was probably right.

Mum had no problems doing crosswords, even if she didn’t know the word for a can opener.

After the crossword was done she went to bed. Left on the kitchen table was the Ikea catalogue. I picked it up and went back to my bed. Across the room on a shelf were a row of half size bright yellow ring binders. Inside were bank statements, one folder for every year. I put two years together in one. In the desk I found a box of plastic pockets.  I put them all in the empty folder.

Instead of going back to sleep I started to put together the first version of the book Lost Words. In every plastic pocket I put a picture of an item, such as a can opener, and the name of it i.e. ‘can opener’ underneath.

Not only did I totally butcher the Ikea catalogue over the next few weeks, I also chopped up a stack of old and new magazines. It was very tempting to attack some of the great books my Mum had too, but I resisted.

This became a little bit of an obsession for a while. I kept adding words most nights to the book. Mum enjoyed watching me doing it and proudly started to carry the ring binder around where ever we went. She called it her yellow book.

Everyone who has had anything to do with Alzheimer’s patients knows that they forget things. For my mother it was a great joy to just sit there and turn the pages and tell me stories that the different pictures reminded her of. When we got to the lemon page she would tell me that as a small child I had loved to suck on them but I didn’t like to eat them if they were peeled like oranges.  Same thing when we got to the salt page. Apparently I ate it by the spoonful.

Different days, Mum told me different stories, but the lemon and the salt stories she told me every time she flicked past the pictures of them.

Her memory of recent events wasn’t all that good but she had crystal clear memories from her and my youth and she loved to talk about it. It always made her feel happy.

In September 2008 Lost Words will be published by Simon & Schuster Australia, so every person who needs this book can then have a copy too. It is still the real thing. The difference is that this time all the many other large and small companies and private individuals have kindly donated their photographs to go into the book.

Before I forget…  
by Denton Cook

Nothing bad comes without a little good on the side, my Mum used to say. She, like so many millions of others, died of Alzheimer's. What hurt the most was that she died so young. She was only 63.

I returned home after having buried my mother and then, within days, my in-laws arrived on our doorstep from overseas. I hadn’t seen them for a few years and the minute they crossed the threshold I knew straight away that my mother-in-law had some form of dementia.

I soon realised that my mother-in-law was worse than I had first thought. My heart stopped at the shock of seeing so many of the same symptoms in my husband’s mother as I had seen in my Mum. For my own sanity I chose to try to pretend not to notice it. That didn’t work. The two women had so many symptoms in common but they were also different. Still, it was impossible to overlook the similarities and the fact that it was dementia.

My mother was fit, looked and sounded like she always had. What gave her away was that more and more often she asked for one thing while she wanted some other thing. She got the nouns mixed up. Several times she asked for a pillow and what she really wanted was a cup of coffee. When I began to think that pillow meant coffee, it changed to something else. On one occasion she asked for a mirror. I opened my handbag and gave her one. She looked at me as if I was totally mad. She then decided that I probably was joking and asked for it again. I still didn’t know what a mirror was, if it wasn’t a mirror. What she really wanted that time was a glass. For me this was like learning a new language. The biggest problem I had was that the new language changed faster than I could learn.

Almost all of our conversations took a wrong turn because I didn’t understand what she tried to tell me or wanted. Her doctor told me that this would most likely only get worse with time. I thought long and hard about what I could do to make life a little easier. That’s when I came up with the idea of the book ‘Lost Words’. I sat up all night and started to make a book with a picture of a lamp and the word lamp underneath it. Next page a picture of an egg and the word egg underneath it, etc.

I named the book ‘Lost Words’. Mum called it the yellow book, because of its cover. At least she got the colour right I thought. We used the book in almost every conversation we had and she carried it with her wherever she went. It was the one new thing that she didn’t forget.

My mother-in-law died recently of another kind of dementia and it has taken me until now to get as far as sharing the book with all who need it. It isn’t the cure and end to all problems connected with dementia, but it was an enormous help to my mother and me and I know that it will be for so many others.

During my research for this book I have been told that it could also be of great help for a large number of stroke patients. I have had no contact with that disease and I have no medical background, but I can see that it may be the case if the memory fails and the patient confuses the words for every day items, whatever illness they suffer from.

If Mum was right and there is a ‘little good on the side’ of her dying from Alzheimer's, it is this book Lost Words. I know it will be a great help for so many who need it and I’m happy I can provide them with it, but... Personally I would have preferred to have my mother around for a few more decades.