Right or wrong?

Right vs Wrong Way - Two-Way Street SignWho’s ‘Living with dementia was the title of my blog poem yesterday, and the last 24 hours has seen various conversations about this topic, one I had a reasonably strong opinion about.

As always, the direction you are taking, does not mean it is the right way, or the wrong way. It is simply your way, your choice.

Some people have agreed vehemently with my opinion about the use (or mis-use) of the term ‘Living with dementia’ and others have disagreed just as strongly, while others have sought to question further, to look at themselves differently, or to question me. I too have sought to look at this topic through others’ eyes, to see it differently and from as many sides of the same coin as humanly possible.

Perhaps I have lost some insight? That is something I cannot be sure of, but I can say, that so far those people who have agreed with me have all (bar three), been diagnosed with dementia, rather than being carers of someone they love with dementia.

twitter logoTwitter feeds about my blog “Who’s ‘Living with dementia”  from people without a diagnosis of dementia:

(apologies I cannot work out how to embed the tweets)

@GeorgeJulian: Really interesting, is it the language (or actions) you object to?

@KateSwaffer: I think it is the inference by many they are living with it … literally.

@GeorgeJulian: ps Sorry for all the questions, just keen to understand more about your experience

and

@legalaware: Fab as usual by Kate.

and

@AlwayEFL: I agree absolutely re the negative language but wholly disagree with view re living with dementia – and don’t u/s your fury.

facebook logoand from people with dementia via Facebook:

DB: Kate I just started reading your blog and want to thank you for speaking so well for us.

JS: The author of the article published a book about her experience with a parent with Alzheimer’s. It is ALWAYS caregivers that think they know everything about the disease.

and via Facebook from one person without a diagnosis of dementia:

SR: You’ve made exactly my point in your poem in fact.

email logoand then by email, from people with dementia:

RT: Hello, as usual our two minds are as one! Folks aren’t accustomed to us simply speaking up for ourselves, and they are not only surprised but many times irritated.

SB: I do not think caregivers should be allowed to say they are living with Dementia.  Because in fact they are not.  They are dealing with a person affected with Dementia.  I may be wrong in my thinking, but when did  care giving become an active role of having the disease.

and from one carer via email:

LB: Living with dementia in my opinion should only apply to people with a diagnosis. I’ve used “living with the challenges of dementia” to attempt to include caregivers etc.

These have led to longer conversations via the response section of the blog yesterday, providing so much food for thought. One comment that came through  today from a friend Philip who works in the aged care sector included this:

“So, I must agree; if you don’t have it, you’re not ‘living with it’; you are living another experience. To suggest something else is to detract from the voice of the person who has dementia and distract from the message they have. Can I say, as a keenly interested observer, that having the disease – living with dementia – and living alongside someone with dementia are two different experiences that should be recognised and valued as separate things? I guess I might put it like this: no one who has held the hand of and supported a mother through childbirth would dream of saying they had ‘lived’ the experience … think about it.”

I feel sure, in the same way that language is now used in other sectors – e.g. the LGBTI community, Indigenous communities, the Female sector – the language of dementia will become more enlightened, and many words and phrases are no longer politically current, so this too will happen in the dementia sector, but perhaps only as long as people living with the diagnosis speak up.

Some responses yesterday including not agreeing with my position on this subject, which is also fine, and another opinion for us all to consider. It is ok for us all to agree or disagree, but I would like to say, I hope more people would investigate their own positions, and consider ours more deeply. I’m trying desperately to do that, and may well fail, but trying to is better than not.

Is it as simple as semantics? I’m not sure, but don’t think so. I don’t feel angry about it, but do feel  strongly about it, and definitely hope by opening the Pandora’s Box here, there can at least be some open and honest dialogue between us all, even if there is never a consensus. The intention is never to offend our wonderful carers, but rather to give a voice to people with dementia through this blog. Maybe not all, but certainly some.

Please go to the blog comments from yesterday and read everyone’s responses, then join the conversation, either here or there. I am very interested in what others think and feel about the use of the term ‘Living with dementia’. My husband says he agrees with me… I’d love him to comment here too!

15 thoughts on “Right or wrong?

  1. Seems to me that its the difference between figurative and literal speech. Although one doesn’t literally have dementia, it still has an all-consuming impact on their life and their approach to it. Each day, they are truly aware of the truth that they are being impacted by, or “living with” dementia. I so appreciate your approach to sharing your experience and perspective.

  2. I have to admit my surprise at this becoming such a hot topic. I thought by now the person-centered approach would be more prevalent. My name is Jan and I live with dementia, it is now a part of who I am and describes a progression of a disease that is terminal, but I am still Jan. Rose is my life partner. Rose lives with Jan, who is a person living with dementia. This statement leaves no doubt in the listeners mind that only Jan has a diagnosis of dementia. Rose may or may not provide care or assistance to me.

    Let’s say Rose does provide assistance to me. At the point in the disease process that I am at, if Rose were to say that she was living with dementia she would probably be assumed to have been diagnosed with dementia, the assistance she provides is not obvious to others and they would have no reason to believe by this statement that I was actually the person living with dementia.

    A very important concept to me is that at no point in this journey have I changed my name from Jan to dementia, and I would be happy to correct anyone who called me by the wrong name. To hit the ball out of the field, when we woke up this morning Rose has the symptoms of a cold. I don’t live with a cold, I live with Rose, who has the symptoms of a cold. Rose didn’t become a cold, she is still Rose.

    • Hi Jan, I too was a little surprised how quickly this became a hot topic!! As people with dementia, it is now the time to speak up, and this has been a great forum to do so… for everyone. We too need to hear the perspectives of others, but I still agree, it is the people diagnosed with dementia, who are living with it.

  3. Pingback: I am a person, not a diagnosis: deconstructing Kate Swaffer’s poem on dementia | Living well with dementia

  4. Thanks Kate for raising the subject.
    I honestly feel we are all saying the same thing. Its just that we all use different words and ways to express our own stories.
    I know my wife doesn’t have dementia.
    So technically doesn’t live with it herself.
    But she does live with the affects of it. So subsequently like my analogy with my mother who has MS lived with it.
    If there are carers out there that make this disease about them I’ve never met one. The one’s I know are caring and a valuable asset to help assist those living with the disease integrate into society and their families.
    One thing I have noticed with dementia sufferers is they play the “victim” card when it suits them and cry foul and then play the “I can do this Im a person to” card when that is needed.
    I find this hard so can only imagine it must be hard for carers and family.
    I don’t mean to offend anybody with my views but as the subject was raised I offered mine.
    Again thankyou Kate for allowing debate and differing views to be aired.

    • Thanks Steve… the many experiences and opinions are healthy, and as I said in my reply to another persons comment today, I think I’m more confused today and less decided about what my opinion is on this topic now!! And as you have described, I have seen the ‘victim’ card played against the ‘I can do it myself’ card, and hope I never use the former one…

  5. Thanks so much for keeping this conversation going Kate. For what it’s worth I’m more uncertain about where I stand now than I was yesterday! I think its fascinating that you’re getting so much universal support from people with dementia acknowledging what you’ve shared, so you’re obviously speaking for some (not just yourself). There is no doubt that this is a thing….in attempting to understand more I’d like to stick with language for a tiny while longer if that’s ok.

    I am wondering whether there is a difference in semantics across hemispheres on this!! I was interested in Peter’s comment above; I agree if living with someone with measles I wouldn’t say ‘I had measles’ (and neither would I ever say I had dementia/cancer) but I disagree with his second sentence, I may well say ‘I was living with the measles’.

    To take the language away from the deeply emotive topics (whether they be dementia, cancer or anything else), if I had a husband, a wife or children I absolutely would use the language ‘Living with a husband/wife/kids’ without inferring I *was* my husband, wife or kids. As it happens I live with a cat (who lets be honest owns me so it probably needs its own language) but if I’m not too paranoid about people drawing their own conclusions about me being a cat-woman, then I would say ‘I’m living with a cat\I live with Mogs’. Would that be the same for you? I’m not sure if I’m making any sense to be honest!

    In terms of research the children analogy is interesting; it has taken many years for the majority of research ‘on/about/involving’ children to develop to a point where children are active participants within it, and in some cases co-producing the research and having control over it themselves. I’m not sure about research progress in the Southern Hemisphere, but in the UK some progress has been made in involving people with dementia in the research process, in deciding priorities for research spend, in the design of the research process…there is no time to be complacent, and we are far from an ideal, I’m talking about baby steps here. Additionally I think research into the experience of people with dementia is, and should be, separate or additional to research into the experience of people living with dementia (in the more holistic sense, that is likely to include carers, family members and others in that person’s life).

    My final thought, and I’m really sorry about the length of this reply, is that I wonder if a push for a more social and holistic model of illness, wellness and disability has led us to this place. We have moved from a medical focus on treating diseases or illnesses, to a more social model with a wider focus on the whole person and their life within society or within their ecosystem (well that’s the ideal)…maybe what you’re describing is a step too far along that continuum to a place where the person is forgotten, or maybe we’re stopping short of the furthest step where the person ‘owns’ the disease or illness.

    Would really welcome yours, or anyone’s, thoughts on this ramble. Thank you again.

    • For what it is worth, I totally agree with your second sentence… “I’m more uncertain about where I stand now than I was yesterday!”

      Thanks so much for your long and very thoughtful reply, which will take me some time to digest, think about and respond to. But, I am glad this conversation is taking place around the world, it is a very important one, I think?!

      As in the UK, people with dementia are also being involved in many areas including research priorities etc. I think we’re quite similar to the UK, maybe behind in some areas of care???

      And from one cat owner to another, yes, I agree, I do ‘Live with my cat Boris’, and I am his slave!!!

  6. ….Dear Kate,……many times I have said to different people “this is not a competition “, I think many of us feel inadequate when sympathizing with someone who has Dementia, people are not sure whether they should be frightened of us and run, or feel sorry….and then run….

  7. Missed your blog yesterday. I totally agree with you. Carers always make it about them. I think this is pretty simple if you loved and looked after someone who had measles you would not say you had measles or were living with the measles. I for one am quite happy I’m not living with dementia but I’m terribly sad that I’m living with someone who is. Anyhow enough of this I’d better get back to regrouting the bathroom, happy days.
    xxxxx

    • Lol Peter.
      I find your comments amusing and wrong.
      Carers always make it about them to me is a ridiculous statement.
      I have dementia.
      My wife lives with dementia because she lives with me.
      She doesn’t have the disease but lives with the affects of it everyday.
      It does affect her and her decisions.
      I suppose technically she doesn’t live with dementia like me but still lives with it in her daily life.
      We can argue about semantics and which may or may not be the correct usage of words but in my house and in my life my wife lives with dementia.
      It’s all about your own personal perception.
      Some may not agree but I don’t care. This is how I see it.
      I grew up in a house living with MS.
      While I didn’t have MS my mother did but I lived every day with MS in my life.
      The only argument is the use of words and the understanding of them.
      Carers don’t think its all about them.
      And how you may choose to use your words is up to each individual.

      • Hi Steve, thanks for joining the conversation. I recall having this one with you and Sonya in Canberra in September, and as you rightly say, we are all entitled to our own opinions. Peter means no disrespect to carers, but like you, feels strongly about it, as has seen many instances when it is about them and not the person with dementia, and would say he thinks you are wrong. I hope you meet him one day, to continue this discussion, one that I’d also love to have with the AADAC group. I’d also have to say, you are the first person with a diagnosis of dementia that I have met or talked to online, who agrees the term ‘Living with dementia’ is ok for carers to use. Take care my friend…

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