Just for something different (!?), I am going to once again discuss the topic of being a care partner of a person with dementia, of which there are more women than men, and the reality that the person living with someone who is diagnosed with dementia, is not living with dementia, but instead they are living with someone diagnosed and living with dementia.
Perhaps I have changed my thinking on this…
There is often an almost angry refusal by many care partners to accept they do not live with dementia, in the sense of being diagnosed with dementia and knowing what it is like to live with it. The continuing reference by carers that they are ‘living with dementia, is also referred to in this blog, which has shifted my thinking on this topic, and which says:
My mum, 88, is now in residential care. She has dementia; we have both lived with it for many years…
This daughter is not saying she is living with dementia, she is saying they have both lived with ‘it‘ for many years.
There is a subtle difference, as if you think of dementia as we do in my house, and that ‘it‘ is the third person in the threesome, it could be seen as us both living with ‘it‘. And we call this third person (dementia), this sometimes offensive, and annoying, and troublesome threesome the Three Stooges, and have even named ‘it‘, Larry!
It sounds more acceptable than the family carers who insist they are living with dementia themselves, even though they are carers, and not the person diagnosed. Stated this way, they cannot be living with dementia as they do not have it. But they are living with ‘it‘, albeit as care partners and not diagnosed with ‘it‘.
So, on the topic of language, I am, as I imagine everyone is, learning more and seeing things differently almost every day. Although I still believe, unless you have dementia, you do not know what it is like to live with it, in the same way, unless you have been through childbirth, you do not know what that is like either.
Perhaps this blog should be called The Value of The Three Stooges?
Author: Kate Swaffer © 2015