Today a number of people with dementia are either packing to travel to Perth for the 30th Alzheimer’s Disease International conference, or we are packed and almost on our way.
To suggest people with dementia cannot live meaningful lives is a big mistake; the challenge for us is that upon diagnosis, we are usually written off! This is changing, and as more of us write blogs, speak at conferences and events, and gather together around the world, either online or in person, the message is starting to ring out louder and more clearly.
When I was first diagnosed, the only words I can think of to describe it, is that I started to feel like a ‘non-human being’, as that is how many people treated me. They stopped talking to me, instead talking about me to my husband, often in front of me; my doctor stopped talking to me until I very strongly asked him to talk to me (!), and that feeling of being a non human would not go away. There are times when I come across people who still put me in that basket, but I will never feel like that again, not even if I get to the stage where I can not speak or write, and am failing to function on my way to dying. Of course, the other side of that coin, is those who say if you can function, then your doctor(s) must have misdiagnosed you, or you are lying about it…
There is NO VALID REASON to die at the diagnosis of dementia. Sure, some days, some moments, are truly awful. Yes, hideous, distressing, sad, and painful. But we all had days like that before dementia too, and most of us didn’t sit down and ‘die’ (give up living) the day we were diagnosed with any other serious illness. We must stop the Prescribed Disengagement that is being dished out to us as well, as this supports a pathway to death, and not a good life after diagnosis.
A new but great friend of mine Mick Carmody who is also living with younger onset dementia wrote this wonderful poem about his attendance at the International Conference that we are both attending very soon, which includes these words:
Excitement is building to a new level
How can we be allowed to live meaningful lives with real engagement and purpose, if the health care sector, and the community write us off upon diagnosis????? Mick’s words in this poem show well his excited,went and enthusiasm for living. Many of Mick’s other poems describe well the sadness and devastation of living with dementia; he knows there is a dark side as well, but is choosing to live better with dementia for as long as he can, and I applaud his efforts, and the support he is getting from his wife and family.
There are two sides to this lived experience of dementia, not just the tragic one, which the media and others insist on sticking to!
I believe it is possible to live a good life even with dementia, with purposeful and personally meaningful engagement, in part, if only others will let us, and if only we will let ourselves. It is far too easy to be overwhelmed by the negatives of the disease, that the community and almost everyone supports as the only way forward following a diagnosis.
Not everyone feels they are able to change their attitude about terminal, chronic or other serious illness or a personal crises, but it is, I believe, definitely worth trying. Some days, I have to pretend one of my best friends has just arrived, and I KNOW I would stop crying and be joyful if she (or he) turned up as a surprise. It works, almost every time. There are too many people around the world living better lives with dementia than society expects, and I am proud to be a part of this group.