Yesterday I found this fabulous picture from saatchi.uk, and then added the words with a little help from two of the boys in my family (!), as find it perfectly matched with the union of the image and words. Living with dementia means it is sometimes quite hard to look in the mirror, as what you see is the irreversible changes and deterioration from the fully functioning person you used to be, and they are hard to view. The reason I continue to look in the mirror though, is to make sure my reactions and responses to these changes remains as positive as is humanly possible.

Sometimes looking in the mirror means you have to give yourself a huge kick up the backside too, but in my experience, it is always worth it. The main message in Wayne Dyer’s book ‘What do you really want for your children’, is if you are having problem X, Y or Z with your child, the first place to look is in the mirror as their behaviour is often a reaction or response to yours! This is confronting, and quite hard to do, but I almost always found it was the behaviour of one or all of the four parents that enabled bad or inappropriate behaviour of my children (we are a Brady bunch)!!

I do think the biggest challenge for PWD’s and their Carers is looking in the mirror, to see if their own behaviour is contributing to the problem. With the carers of people with dementia, I suggest the first place to look when we are behaving in ways you find hard to cope with, is in the mirror. Your behaviour might just be enabling negative or challenging behaviour from us, and as dementia progresses, we become unable to stop the changes happening to our memory, personality, behaviour, etc. We also behave as a way to communicate, when we have lost the ability to communicate in the way you, the person without dementia, is still are able to. If we become angry perhaps we don’t like what is happening to us, or the way you are speaking to us. If we become irrational, maybe we just don’t comprehend the situation fully. If people with dementia try to escape from the nursing home, perhaps they feel like they are locked in gaol… yes, locked in prison, as the doors are locked and the code is a secret.

When you visit, perhaps we don’t remember you anymore, but are trying to pretend we do, or we can’t keep up with the conversation anymore, and so make lots of inappropriate responses. For the PWD, there  is a lot of ‘fuzziness’ going on inside their brains, and the clarity of thought is becoming more and more muddled. You have to think about the ways you can change, to assist us to function with harmony. You have to enter our new world, and find ways to adjust your own behaviours. Otherwise your experience will be as jaded as ours.

If I ever enter residential care, I will be cantankerous, I will refuse to play Bingo, and I will be grieving deeply for my own home, and my own things. I will be grieving for my independence and feeling frightened by the changes. I will also feel humiliated and embarrassed others have to care for me. I already feel this to some extent. By then, it will not only be imperative for others to change how they communicate with me, if they don’t, I will probably become intolerable. By then, it will be up to others to look in the mirror as doing that may not have any real meaning for me; I might not even know who is looking back at me in the mirror. I hope then you will still call me Kate rather than ‘Demented’. I will still be Kate, a person living with the symptoms of dementia. For now, I can still look in the mirror, and am mostly okay with what I see…