The last three or four weeks I was doing a short Rethinking Ageing MOOC course at Melbourne University, which I resigned from yesterday, as it is was too time consuming, for no really meaningful outcomes. I gather it was just a way to encourage people to sign up to the University for full degrees, but did not encourage me to do so, perhaps because I have too many irons in the fire already!
Anyway, one question we had to reflect on recently is what does living well mean to us.
The image here is of a lovely lady Anne from the UK, also an ex nurse, who I met in London at ADI2012, doing her very best to live well with dementia, at least some of the time, who spoke up publicly about not being called a sufferer. She inspired me to keep banging on about it, as have many others speaking out about living well or better with dementia.
Some of us see the glass half full, others see it half empty. Both ways are 100% ok, and right for the person making the choice, either consciously or unconsciously about how to respond to life.
Living well, to me, is being allowed to live with hope.
Living well (with dementia or any other disease) does not necessarily mean ‘well’, in the medical sense of the word, which means free of disease. It means others enable me to live the best life possible, and I can at least some of the time, feel hopeful enough to make an effort to do the same.
Living well (with dementia) is a very hot topic these days, and although governments have used it as a catch phrase, many people without dementia have titled their books including the term, and even Alzheimer’s Disease international have a Global Charter, I can live well with dementia, almost no-one is talking about how to do this. Any many are balking at the idea it is even remotely possible.
There are many people with dementia who do not believe it is possible, and there are also many supporters of people with dementia who believe it is not possible, and also, that it is ok to publicly label us all as sufferers.
Of course, most of these people would not label people living with disabilities as retarded, but still argue it is ok to label us as as sufferers. I say, it is absolutely ok to call yourself a sufferer of dementia, or perhaps even your loved one a sufferer of dementia, privately, but it is disrespectful to keep this negative and disabling discourse going on publicly. As always, I am willing to take the risk of being damned and ear bashed here by people for using the R-word, even though those same people refuse to respect the very large group of people with dementia saying it is disrespectful and offensive to them, to publicly use the S-word.
There are a large number of family and professional carers of people with dementia, who have seen true suffering as people are in the end stages of dementia. I’ve also seen it for people dying of cancer, MND, and many other illnesses or conditions. I have no doubt we will, and sometimes do, suffer from the symptoms of dementia. However, to label us all as suffering/sufferers, as if we are all suffering all of the time, is fatalistic and dehumanising. It implies it is not possible, is misleading, and simply exacerbates the stigma and myths of dementia. It is time that even people with and without dementia, IMHO, stopped publicly labelling us ALL as sufferers. That might be their experience, but it is unfair to publicly state we are all living that way. I feel pretty sure they would not argue for their right to publicly the word retard.
Feel free to call yourself or your loved one with dementia a sufferer, privately. It is disrespectful to feel so free to publicly label all of us living with dementia as sufferers. It seems unreasonable to me, that others get upset that some of us feel like we can live well or better, even with dementia. And this does not mean there are not many times where we do suffer, but to always label us all in that way, as if that is the experience of everyone, is unfair and disrespectful. Let those of us wanting to, live with enablement and hope.
Maybe living better with dementia than the public perception of dementia may be a more appropriate way to phrase it, but to publicly label all of us as dementia sufferers, is unreasonable.