What should we call ourselves?

There's always a lot of discussion about language when we're talking of illnesses or disability and only today someone mentioned on Twitter the use of PLWD (person living with dementia) and how demeaning it was.  This, along with PWD (person with dementia), is a pet hate of mine.  Why can't people just write it out in full?  How much longer does it take and are we really in so much of a hurry that we can't stop and think what we want to say?  Right at the beginning of this blog, when I first started writing, I asked for alternatives to 'person with dementia' because I didn't like the feel of the phrase; no-one came forward with any ideas but then 'Person living with dementia' came up and that sounded better.  I still like it as long as it's not shortened to PLWD but today's Twitter post got me thinking about what we call ourselves, those of us living alongside dementia?  I think at times we are also 'living with it' but that detracts from those with the diagnosis so have tried other ways of saying it such as 'sharing a life with dementia' and 'living a life affected by dementia' today's thoughts however brought 'dementia survivors' into my head and I wondered what you thought to that, maybe not to describe us right this minute but for one day in the future.  We've already talked about forging a life for ourselves, about planning for the future, about caring for ourselves and making sure we get out of this tunnel with our sanity intact all of which sound very much like surviving to me.  I do know that we're told frequently to look for the positives in our situation, to search for the person we loved because they will still be there deep inside and to live in the moment and enjoy the life we have now but I've also told you that doesn't work for me as a long term strategy.  I've looked and I've looked but I can't see my Ash anywhere, not on the outside and not on the inside.  Those of us living this life have already survived seeing our loved one's disappear in front of our eyes; we've seen our relationships disintegrate without knowing why; we've seen our lives turned upside down but not known the cause or how to fix it so I think we've already survived seismic changes but we know lots more about it all now and one of the most important things we know is this isn't forever.  So I'm here for Ash now when he needs me, I'm committed to doing the best I can for him for as long as I can but there will be a life for me 'afterwards' and that's when I'll call myself a dementia survivor.

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Karen said…
Someone might take it to mean that you were diagnosed with dementia but you are still OK or even symptom free(impossible I know). I can’t think of a better one except maybe SLOWDACTOS or survived loved one with dementia and came out the other side. Just kidding!!!
Jane said…
It's interesting isn't it that we forget how little those not directly involved know about dementia. I shudder when I realise I used to be one of them before our lives changed for ever. Love that you used that phrase 'came out the other side', it's my favourite description of what's waiting.