What does living well mean to me?

do not call me a suffererThe 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.

20 thoughts on “What does living well mean to me?

  1. Pingback: A single cure is not the only hope for living better with dementia | Dementia Vision

  2. Hi Kate, great to hear you are spending quality time with friends. I am your supporter and frequently comment on FB dementia care groups in support of public language change. I noticed that some take it as a personal attack of their opinions, they don’t read the crux of the comment. Most people like this exit these groups, leaving us to continue with the constructive and meaningful conversations we promote 🙂 Be confident that it’s going to change…. majority rules 🙂 xx

  3. Kate, you are right and I agree. I also believe it’s a matter of education and I think it’s useful to educate gently and mindfully. If I may use myself as an example. When I first began following your blog and put a link in the comment, you wrote that you would not publish the link because I used the word sufferer on my blog. You were right, I had. However, the usage was rare and I had done it out of ignorance, not out of intention. I went through my blog and removed such references where appropriate. You also flagged it on my Twitter account profile which I had missed. I saw it on a tag to one of my videos the other day where unfortunately it will have to remain in the old version of the video for mechanical reasons. The point is that I think reasonable people with a healthy perspective will see the merits in what you and others advocate when they are given an explanation.

    I also think it’s useful to give people the benefit of the doubt before accusing them of being insensitive when they may not have been exposed to the rationale of using dementia friendly language and thus being ignorant (as I was) rather than wilfully insulting or whatever.

    It’s unfortunate that some people persist in using the label sufferer and attack you for requesting it. I sometimes get similar reactions when I ask people to call me Susan rather than Sue. Some people simply do as I request with pleasure, others roll their eyes and continue to call me what THEY want whether I like it or not 🙂

    While it’s great to advocate positive language, I think it may also be useful to avoid being militant about the use of some words. As I believe I may have said in my comment on the subject way back when, I have suffered, my mother has suffered, others have also suffered. It’s not wrong to call us sufferers. We also all suffer life. It’s not only PWD who sometimes suffer. Everybody suffers at one point or another. I understand that you acknowledge this, and I think it bears repeating.

    Everybody also experiences joy and happiness. Unless they are downright curmudgeons all the time!

    I also agree suffering is not the defining characteristic of anyone.

    Thanks to SteveMilton1 for the link that leads to the UK pdf on language here:

    http://dementiavoices.org.uk/wp-content/uploads/2015/03/DEEP-Guide-Language.pdf.

    If anyone has other links to similar documents it would be great to have them.

    Am I right in thinking this is the one you pointed my to initially:

    https://fightdementia.org.au/sites/default/files/full-language-guidelines.pdf ?

    Thanks.

    • Thanks for sharing your thoughts Susan… and from now on, let us all stop even using the word suffering when relating to a person living with dementia (living well with it, or even not so well with it)… and yes, the link to the Dementia Language guidelines is I believe the most recent set of guidelines from an Alzheimer’s Association/Society.

    • It is hard to avoid being militant, when people are so offensive and ignore our basic human rights to be part of the conversation about us! and yes, the link is to the most recently updated dementia language guidelines done by an Alzheimer’s advocacy organisation, that I know of.

  4. Well said Kate! Living well to me is living according to my purpose and in doing so my life flows easily. Not always easy but is what I strive for. If your soul is happy and fulfilled then so to are you. Hope all is going okay for you and by the way, don’t let too many of those irons in the fire burn you! Busy lady you are. Do smell those roses as well….I think your involvement in things is what has kept your Dementia at bay and not as debilitating…You seem to be doing all the right things….Hope you are taking that Turmeric!!!! Be sweet and hugs to you…VK ❤

  5. Hi Kate –

    Beautifully put – and apologies if this is almost identical to a comment I made on Shibleys blog yesterday but I do think the point you make needs supporting and reiterating.

    The poster of Anne is related to a call to action by DEEP and the Dementia Action Allinace to Check, Change, and Challenge on language – to which people in the UK can sign up here http://www.dementiaaction.org.uk/dementiawords

    It has not been without its critics of course – many of whom use “political correctness” at some point in their argument – and who make the very fair argument that, as you acknowlege, dementia does cause suffering. The crucial points are, to my mind:

    1. People can call themselves what they like. Its when language is used to refer to everyone with dementia it becomes important, as language frames the perception and expectations of others.

    2. Although dementia can cause suffering – this does not mean that it is suffering that necessarily becomes that persons defining characteristic, at any point in their lives, and no matter how advanced their dementia.

    3. Crucially, those whose own scars inform and confirm their view that dementia is defined by suffering should never assume that those people with dementia trying to build a different narrative have no scars and no pain of their own.

    Hope you are well Kate – looks like you are being the hostess with the mostest !

    • Thanks Steve… and I certainly hope some of the people who are publicly bagging me on FB for daring to ask not to be called a ‘sufferer’ think about joining the challenge!!! See you in June or July 🙂

  6. Hi Kate
    Well said. I also know Anne she attends many of the meetings that I also attend at the university. She definately speaks up about living well with dementia, as do I and all the others who are changing the way people speak about us. We do not suffer we live well with the cards that have been dealt us. The sooner that people who haven’t got dementia get it into their thick skulls the easier our journey will be. What we need is help when needed to make life easier what ever that is needed at the time
    Keep up the fight.
    Regards Lesley xxx

    • ThaNKS Lesley. Interestingly, some are giving me critical and personal negative feedback on various FB care groups, but don’t engage with the more balanced conversations here, which includes others like you living with dementia! Take care, and hugs to you and Anne xx

  7. Another insightful and interesting read Kate! I hadn’t realised this was such a problem as in my line of work ‘living well with dementia’ is at the forefront of all we do. As a health professional seeing the very worst of what dementia can do it is also difficult not to view them as suffering and to take away that image would risk taking away my compassion. It may encourage you to know that there are health professionals out there who primary aim is to ensure wellbeing in each moment of living. Perhaps I need to look outward from the health service and understand better what it is like you people who are living with dementia in other public settings!

    • Thanks Naomi… I think you hit the nail on the head here: others see us as suffering, and even in the later stages, it is not all suffering. I have nursed in secure dementias units, and been a gamily carer of three with dementia, and it was not all suffering for them, more often worse for me to watch knowing there is nothing is could do. As long as the public discourse continues to call us sufferers, which continues to offend and disrespect many of us trying our best to live better with dementia, it keeps the myths and stigma front and centre. Unless diagnosed in the late stages, none of us are suffering all the time in the early days, unless that is our chosen response. IMHO, as always! But thanks for thinking about it more…

  8. Pingback: What does living well mean to me? | Neurologica...

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