Looking Back

I was recently looking through my wife's last filofax because I needed her national insurance number. She used the filofax very successfully for a few years to help her keep organised and to remind her of things she needed/wanted to be able to remember. I didn't find the NI number there, but I did find all sorts of details that she'd jotted down over the years (we replaced the dairy pages each year in the leather case but kept all the other pages). The handwriting ranges from normal (she had lovely handwriting) to scrawls that were very hard to decipher and often contained repeated letter and syllables.

Amongst the things she wanted to remember are family birthdays then (later) family names, her daughters' favourite animals, places where she lived and worked, etc.  Reading these notes, or just thinking about them, brings tears to my eyes.

Perhaps the most moving notes are references to her youthful travelling adventures. At the age of 18 she did VSO in Ethiopia and was introduced to Emperor Haile Selassie! She also drove coaches overland to the Soviet Union.

The things she was trying to remember are amongst those that make us who we are.  No wonder she wanted to cling on to them.

Now, needless to say, she cannot drive, read or write, and her conversation is very limited. But, perhaps because of her personal history, she still gets some pleasure from travel, despite all the difficulties she has to overcome.

You can look back at the earlier phases. Difficult as they were to come to terms with at the time, you would give anything to be back there now. 

Of course, we are both lucky. My wife is generally calm and contented. She is physically healthy. I am deeply affected by some of the stories I read online from people who are not so fortunate.

But, for all those affected, it's a horrible disease. And to see aspects of the person disappearing is perhaps the hardest thing.

Suffering from dementia?

As you will have gathered from my previous post, I don't believe my wife is suffering now.  Of course, if her pre-dementia self could see her now and realise all that has been lost, it would be very distressing  -  to her pre-dementia self (as it is for me if I think about it).  But as she is now, she isn't aware of what she has lost so isn't distressed about that.

This article by a person living with dementia questions the common usage 'suffering from dementia':

http://www.thanksforthememory.org.uk/announcements/living-with-alzheimer-s-not-suffering-with-it

I think such articles serve a very useful purpose in reminding us that not all people living with dementia suffer.

However, it is clear that many do.  And certainly there have been points during my wife's journey when she has suffered, as my earliest posts demonstrate.