Living Beyond Dementia™

Is living beyond dementia easier with money?

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…

Living well, living better, or living beyond dementia?

Living beyond dementia is now my preferred term to support anyone who has been diagnosed with dementia, as a way of helping them to think about the possibility of living more positively with dementia.

Fingers crossed! I hope it is more helpful, and feedback so far has been really encouraging. The terms living well or living better too easily imply someone may not be living well, e.g. not ‘doing enough’ to be able to live well, or the term living better (or worse) than someone else.

It could easily seen as being too prescriptive, and to either ignore or dishonour the very real challenges of being diagnosed with dementia, which is a terminal, progressive, chronic illness that ultimately ‘steals’ our functioning and capacity.

Alzheimer’s Disease International have a Global Charter, Living well with dementia and for some time, I had thought that term was positive and helpful. However, not only do almost no health care providers tell us how to ‘live well with dementia’, they don’t even tell that living well with dementia is possible.

Public and health care professionals perceptions of people with dementia, which are fuelled by the negative discourse used in the media and by most people when writing or talking about people with dementia, continue to suggest it is simply not possible to live well with dementia, or indeed, beyond the diagnosis.

A colleague and dear friend of mine, Dr Shibley Rahman wrote some time ago on this topic as part of a Facebook discussion with some carers, many who mostly insist we are all ‘suffering’;

“The concept of living well with dementia is not an attempt to sanitise people’s experiences of dementia, nor to be a way by which some feel guilty or uncomfortable that perhaps they are not doing enough themselves, to be able to live well with dementia. It is a concept that is meant to convey there could be more constructive ways of promoting well-being and better quality of life for people with a diagnosis of dementia.”

For some time now, there has been a global conversation around the terms, living well and with dementia, and then on the term living better with dementia, but perhaps, these are not in fact, very helpful terms.

Since being diagnosed with dementia, I have learned to live beyond the diagnosis of dementia. It did not happen easily, or straight away, and for the first 18 months or so, I was spiralling downhill rapidly, with no thoughts of it ever being possible to live well with dementia, or to continue to excel and exceed my expectations, or to continue to reach any of my goals.

Once I was taught to see the symptoms as disAbilities, and to find strategies to support them to allow me to function, albeit differently to when I did not have dementia, I started to see another way.

As I developed my thinking on dementia through the lens of my own lived experience, including coming up with the phrase Prescribed Disengagement™, I started to think about ways to combat this negative prescription is giving up our pre diagnosis lives.

As a result o this, my ability to live more positively and productively with dementia increased. Yes, I know this will change one day, but that does not matter, as I was born with a death sentence anyway, just as you all were.

Being diagnosed with dementia, was certainly not a reason to die straight away, that is, give up on living positively. I was not at the end stage of the disease, and therefore, to give yup my pre diagnosis life was extremely unhelpful, and I would suggest, immoral and even unethical.

Living beyond dementia is, I believe, what we need to learn to do, and what health care professionals need to support us with. On top of that, if we can get rid of Prescribed Disengagement™, and have health care providers offer us proactive, rehabilitative and enabling post diagnostic pathways of support, with strategies and support for the disAbilities that the symptoms of dementia insist on giving us, many more people with dementia will live beyond the diagnosis, and the current pathway of loss, despair and a focus on our deficits.

I stopped crying a few weeks after being diagnosed, and ultimately took action to actively ditch the PLOM disease (Poor Little Old Me) that I had for a long time after the diagnosis, and to get back on with living.

We are all born with a death sentence, but do we wake up every day working about that and not bother to strive to live as well as possible, or just wake up every day waiting to die?

When we are diagnosed with any other terminal illness, most people strive to live well as well as possible with it, and to fight it, and importantly, the medical community proactively supports us with every medical or holistic step and support to do so.

So, why, when we are diagnosed with dementia, do we want to give up striving to live beyond dementia, upon diagnosis?

Personally, even though a diagnosis of dementia is not as much fun as a birthday party, I do think it is far preferable to accept that a diagnosis of dementia does not have to mean the instant death of the life we had before the diagnosis.

I believe it is very important to keep challenging the perceptions of dementia, as without doing that, nothing will every change.

Living Beyond Dementia

This is my very first post, on my new website, Living Beyond Dementia. It will become,the portal for the positive things about dementia, with as much information as I can find, evidence based, anecdotal, and other, about the very real possibility of living beyond a diagnosis of almost any type of dementia. For me, after the first couple of years of sadness and hopelessness, and after almost spinning down the learned helplessness pathway, it has become the Olympics of my life!