There has been a list of notices inviting
People to attend dementia seminars
“How to manage wandering“
It may be rather obvious soon
They are very annoying
And insulting
I am not a wanderer
Nor am I wandering
I am a person…
Sometimes people like to go for walks
Even people with dementia
Sometimes people get lost
Even people without dementia
Sometimes people go walking because they are bored
Even people with dementia
Sometimes people walk for exercise
Even people with dementia
We are Mothers Fathers Wives or Husbands
Daughters Sisters or Friends
We are not the labels
Of the symptoms of dementia
We are real people
With hearts and souls
Still able to feel the subtle
Lack of personhood
In the language that labels and
Stigmatises us
Beautiful poem. My mom was a hiker and spent hours exploring the trails at the Colorado National Monument. Prior to being diagnosed with dementia she would often walk alone with probably not enough water, but no one said anything. After being diagnosed she began walking with a group but because she wouldn’t drink as much water as they felt necessary and they couldn’t think of a way to “convince” her to drink water they wouldn’t let her come on the hikes. Much later living in an assisted living facility she loved to slip out the door when someone was entering and walk in the neighborhood. One time she walked across a busy road to look at the flowers on the other side. She was discovered and the administrator told her she couldn’t do that anymore because a car might not see her; she responded, “I’ll make them see me.” I have wonderful memories of being her hiking partner until she could no longer walk and she died soon after this purposeful action was gone. Purpose and joy are so important that I have been doing advance education with my family in case I also experience dementia.
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How wonderful Richard… thank you for sharing
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Totally agree with everything you say Kate. My dad was labelled ‘a wanderer’ and it infuriated me. He had been a busy farmer in his working life, he wasn’t accustomed to sitting still, but of course because he wanted to move about he was ‘wandering’. I wrote a blog on this topic: http://d4dementia.blogspot.co.uk/2012/11/going-places.html
Sending koala hugs xx
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Thanks for the link to your blog, and sharing your own experience… #koalahugs right back at you too! xo
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……Dear Kate……..well said…..
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Thank you Tony…
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Brilliant Kate – well, I think so anyway. There has to be a better way of expressing things. You know the one I love? … ‘dementia sufferers’ – the journos love it, embrace it, promulgate its use – even those in journals that should know better; I came across it again the other day. It seems as though we’ve a long way to go before we break down the use of this language that creates a sense of difference, oddness and ‘otherness’, that boxes people up in a stigmatised group: “old, demented, disabled” … whatever. And I guess that there’s a prevailing idea that getting people to use better language that values people as people is mere political correctness. But we can keep on trying. An excellent thought piece. Thanks.
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Thank you Philip… and another thoughtful response. AA are currently reviewing appropriate language with the LGBTI networks, and the language being used to describe people with dementia is next on my list!
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Exactly Kate. Every day a family member/friend will tell me “X is now doing Y”. On scratching the surface I almost always find that the person is doing something we all do (eg purposefully walk or make an error/take a risk) that actually is only somehow newsworthy now in light of the diagnosis. It is always satisfying to help concerned supporters to realise the normalness of many such activities. This must be incredibly frustrating for people living with dementia – that and “oh that happens to me all the time….” Have a lovely weekend, Denise
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Thanks Denise, and your final comment hit another nail on the head!!!
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Thanks Denise, and yes, the “oh that happens to me too” response drives all people with dementia that I have ever spoken to nuts!
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