The following is a comment posted privately to me on Facebook about my last post Living well, living better, or living beyond dementia?; ”
“Thank you!! I have heard so many negative comments about the whole “living well with dementia” campaign. Maybe some people have money to do the things they did and are not restricted by their symptoms – I am not one of them, I think people need to hear the good and the bad. This life is NOT easy, but it’s NOT the stigma people think. There is however a balance. I love the phrase Living Beyond much better!”
This was my reply;
“I love the term too as it does not subtly negate the less pleasant sides of dementia and I agree living well is to hard for too many to accept, and reasonably so too. I’ve also thought a lot about the difference having money can make to what’s possible and know far more people with dementia are living with very limited funds, which adds to the negative impact of the diagnosis.”
This conversation brings me to talk about the impact of dementia and what many people tell me they experience after a diagnosis, which is that they end up almost being on the poverty line after the diagnosis, and this impacts on their ability to live well, or even beyond the diagnosis.
Perhaps though, with a change in the system and our post diagnostic support, and moving away from Prescribed Disengagement™, it may not may not impact the ability to live well or beyond the diagnosis as much as it does currently.
I am not by any stretch of the imagination a capitalist, and in fact, my husband says if he won the lottery (he buys the occasional ticket, I don’t as I dislike gambling), he probably would not tell me if he’d won, as I’d be likely to give half of it away to a homeless organisation, The Big Issue SA, and the other half to Dementia Alliance International!
But having money allows one to have freedom, and more importantly in the case of a terminal, progressive, chronic illness like dementia, to bring in services and support, and to be able to engage in a lifestyle and activities including travel and leisure, that definitely increase ones perceived well being and quality of life. In reality, most countries health care systems barely provide proper health care, let alone anything else!
So my two questions on the topic are this;
- Is living beyond dementia, or in fact, beyond any other terminal of chronic condition or disease, as simple as having available spare cash?
- Is it possible to live well without money?
To be really honest, I am not sure if money is the only important thing in the scenario, as I most definitely do believe our attitude has a lot to do with it, but without money, ultimately, I suspect it is really tough to live well or easily beyond any health issue or crisis, no matter what one’s definition of living well is.
For example, I have two friends who actually choose to be homeless, who say they prefer to live in the parklands, and away from the ‘trappings of money’. They find life is far less complicated, and it is their choice.
I also know people who talk about their own lives as if their financial resources have nothing to do with their lifestyle, and yet, for example, to become an artist or a writer or an actor, without financial resources coming from somewhere or from someone else, it is so much easier when you are financially supported while you are ‘struggling to make any money’ from your art. Without this support, it would be almost impossible to live or to bring up a family.
Without my husband still working, life might be quite different for us. Although, we have also been very careful with our money, and saved for tough times having both grown up in low income families. That has helped as well.
Being poor is hard work at the best of times; I know as I have been very poor a few times in my life, but add in a terminal illness, and that most definitely may mean any sense of living well, or beyond the disease if almost impossible…
Author: Kate Swaffer © 2015