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.
Sunday, 23 February 2014
Sunday, 16 February 2014
I've read online about a disturbing way in which multiple drugs are sometimes prescribed for people living with dementia. This is how it goes, based on an actual example. The first drug is prescribed to deal with dementia symptoms. The person then becomes violent. A drug to reduce the violence is prescribed in addition. The person now starts having frightening hallucinations. A third drug is added, an anti-psychotic which causes the person to become zombie-like. Now, if the first drug has clearly not worked in the way it should have done - which is often the case - surely the obvious, sensible, logical thing to do is to stop it. Instead, the situation is complicated and compounded by the addition of another drug which also worsens the situation. And then another drug is added. Which worsens the situation further. I wonder what the record is for the number of drugs prescribed in this kind of sequence?