It concerns me that such a fuss is made in the media about people (usually more so when they are celebrities) when they either get a diagnosis, or die from dementia. Surely dying is a natural part of life, and for those left behind, just as devastating when it’s from the violation on the body caused by cancer or MND, as it is from dementia.
The 100% statistical guarantee in life is that we all die, and I don’t mean to be morbid when I write or talk about dying; it is a simple fact of life.
The continuing myths that we are ‘not all there’, or ‘fading away’ or ’empty shells’ has a lot to do with the stigma, and there is a whole chapter on the many myths of dementia in my first dementia book. It’s also partly why we are labelled ‘sufferers’, and I am certain that label is more to do with the experience of our family and friends, as they watch us change and die. Whilst there is no disputing that some of the time, people with dementia do suffer, is not the sum of our experience, and just as before dementia, we had good and bad days, so it is after a diagnosis.
I’ve previously published many posts on death and dying, some even with the same title, We live until we die. The first one was published in 2013, the second one in 2015, in honour of a beautiful woman called Moira who became ‘another mum’ to one of our youngest sons best friends, after his birth mother had died when the boys were about 13.
In 2012, I wrote a blog called On death and dying, and thought this was worth quoting from it:
“With the diagnosis of a terminal illness, mortality gets to sit at your table, right next to the knife and fork, up close and personal, whispering messages that you might die much sooner than you thought. You do not get to continue to view death from the large platform called life, but from the edge of the stage, just behind the curtain, as if waiting for your cue to die. A diagnosis of a terminal illness makes you feel temporary, transient, and somehow perishable; mortal.”
Let’s get comfortable with living with and beyond dementia, not just dying from it, but also, let’s start talking about dying, as it is the one certainty in life. For those left behind, it is important they know our wishes if we become incapacitated in any way. Get you end of life affairs in order, if you are old enough to vote, rather than wait for a crisis or illness! I featured in a video about it here, and you can read more about planning ahead on the SA government website.
If you live outside of Australia, do think about finding information on advanced care planning, and being proactive about how you’d like to die, or where you’d like to live if you become unable to care for yourself. Better to make your own plans now, than leave it to others, who may not know what you want when you can no longer make decisions for yourself. Whether it is dementia, or a major illness or injury, it is only a few who are lucky enough to just go to sleep and not wake up…