Real stories

‘Mom seems afraid that if she doesn’t write things down, she will forget.’

Ma used to write shopping lists for us when we were children. Short lists with just a few items and we felt so grown up going to the corner shop to do the shopping for her. 

Now it’s far more than writing lists that occupies Ma’s time. I first noticed this about two years before her diagnosis when she was living in Trinidad. Yes, she still wrote shopping lists but she also wrote accounts of incidents that had occurred during the day. A bit like a diary, perhaps.  

Dad bought her writing pads and when these were finished he bought her more. And more. Sometimes he was not aware that her writing pads were finished and then Ma would find whatever she could to write on. The edges of pages of newspaper and magazines. The cardboard roll inside toilet paper and kitchen paper, which she had carefully unrolled. She even wrote on toilet paper and kitchen paper itself.  

Notes were everywhere

There were pieces of paper with Mom’s neat handwriting everywhere – in drawers, in books, piled up on the dressing table and the kitchen table. 

I tried to resist the temptation to read her notes.  Sometimes I failed.

'I am going to feed the chickens.'

'I have fed the chickens.'

'It is so hot I am sweating like mad.'

Some of it, like a diary, gave an account of her feelings.

'Today was a good day. I enjoyed watching Col in the garden.'

'I don’t want to go shopping tomorrow.'

'My shoulder was hurting so much today.'

If you ask Mom what she is writing she would literally read out what she has written.

'I have made my bed.'

She has no sense that this blow by blow account of the minutiae of every day is unusual. Or, that important information is sometimes hidden amongst the relative trivia.

'I have eaten my dinner. Yes I have.'

'I must be ready for the doctor tomorrow at 11.00.'

'I am going to wash my hands.'

'Another day, another dollar.'

'I must remember to brush my teeth.'

Ma’s notebooks are a bit like her handbag. She is never without one or the other. And initially I saw the note taking as useful. A good strategy to help her remember appointments and other events.  

'We’re going out for lunch tomorrow. I must be ready by 12.30'

Ma's note-taking has two failings

And sometimes I suggest that she writes important things in her book, but I know she is going to do this anyway.

In theory, Ma’s note taking is a very good strategy except that it has two failings.

First, she tends not to read her notes so when she wakes in the morning she does not read that it says, 'GP at 11.00. Be ready for 10.30.'

Second, even if she does read her notes, the important information is lost in the mass of unimportant information.

I wonder about Mom’s note taking. She rushes to write things down as quickly as she can.  

'I’m just going to put the washing in the machine Ma', I say, and she grabs her note book and begins writing furiously.

'Wendy is going in the kitchen to put the washing in.'

She seems afraid that if she doesn’t write things down, she will forget. Of course she forgets whether she’s written it or not but in that split second she has remembered and that gives her a sense of satisfaction.

'Where are you going Ma?' I ask.

'To the toilet. Look! I’ve written it down,' she says gleefully and in that moment that’s all that matters.

NOTE TO SELF: Make sure there is a ready supply of note books as Ma’s note taking is important to her, at the very least giving her a sense of control over her difficulties.