You may be wondering what I mean by that quote? Well, to start with I can most certainly guarantee no-one with dementia ‘lives well’ or even ‘beyond dementia’ all of the time. For that matter, with or without dementia, not everyone lives well all of the time !
But people with dementia appearing to live well or beyond dementia (than the public perception of what it is like for us) may be because they’ve been given or have taken some of their life back and have something to live for again. After the difficulties of getting a diagnosis, and then being asked to support advocacy organisations to either raise funds or awareness about dementia, or both, rather than go home to die as most are still advised to do, most dementia advocates find new purpose and meaning to live, not just die from dementia.
On the other side of that same coin though, being a powerful advocate with or without a high profile can also put people off from wanting to become one, as in the early days of a diagnosis, it is all too easy to take on the negative sides of the experience, and feel like you are not as capable as someone you see in the spotlight. What most dementia advocates don’t show publicly, is the very real reasons (symptoms / disabilities of dementia) they were diagnosed in the first place.
Memory loss and other cognitive changes, including getting lost, confusion, language and other semantic difficulties such as word finding and meaning, loss of speech, loss of the ability to reason, and so on all take their toll, and are not only hard to live with, for most, also quite hard to see until more advanced dementia. It is hard enough our families seeing these changes, and also experiencing them, and for many of us we prefer to work hard to hide them from the public.
After all, who really wants to ‘highlight their deficits’, what they struggle to do, or perhaps can no longer do?
Friends and fellow dementia advocates Chris and Jayne Roberts and their daughter Kate from Wales were incredibly gutsy showing the world in the award winning BBC documentary the other side of their life with or alongside dementia, which is very different to what you see when you meet them over a meal, or at a conference or meeting. I really applaud them for their courage in doing this program, but can guarantee this is not something I would have the guts to do. Do watch it, it is a raw, honest, moving story about love and life, alongside of and in spite of dementia.
The new meaning in life many dementia advocates find in these roles, may also why some advocates don’t easily pass on the baton, as to allow a more newly diagnosed person to take on the media or other roles might mean they get sent back home to die!
It is not being in the spotlight, but the fear of nothing to do again that makes it hard to let go. On that note, I’d be happy to let go of a few of the batons I hold, especially in my DAI roles, as I am finding them not only more difficult to do, they have taken a very great toll on me and my family, emotionally and personally.
As my regular readers here know, it’s been a very rugged 6+ months for me personally, and if I could stay home and just study and write (and spend much more time with my sons, husband, close friends and our cat, Mr Boris), that would be my preference. So, as my final blog for June 2017, also the end of the Financial Year in Australia, I only have one thing left to say…
If you have dementia and want the Chair or CEO job at DAI, or both, please raise your hand now…