Who’s ‘Living with dementia’

memory class

Spot the person with dementia…

So many people

are living with dementia

though we can look the same

as those others supporting us

and caring for us

not living with it

but living alongside those of us

diagnosed with dementia.

No-one would dare to say

they were

living with cancer

or HIV Aids

unless they

were diagnosed with it

it would be unspeakable

and unpolitic

and yet

so many carers and researchers

of and for

people with dementia

feel the right to say

they are living with dementia.

If they are not diagnosed with dementia

They cannot be living with it.

26 thoughts on “Who’s ‘Living with dementia’

  1. Pingback: Word games: Pippa Kelly | Creating life with words: Inspiration, love and truth

  2. Pingback: Word games? | Pippa Kelly ...

  3. Pingback: Reflecting on 2013 | Creating life with words: Inspiration, love and truth

  4. Hi Kate, I write on my blog about “living with dementia”. And I can agree and disagree with what you say. The last thing I would ever hope to do is take someones voice, or just join the bandwagon because it’s “in”. I have no intention of offense when I write about it. But I guess I find it hard to explain what I mean.
    I agree that I live with the effects, rather than living with it in my head, my body. But I think illnesses like this that have such a huge impact on the household, I interpret as “living with” as in accomodating with, rather than being at one with. Does that make sense?
    Also with my blog, I was hoping to use it also for nan to put her opinions across, and since we have moved she has become much more vocal, which is great as I now hope to include her. She is obviously the important voice that should be listened to. I agree there.
    When I started writing, and often when I update I ask nan her permission to put her story across and how she would prefer things to be worded. This can be tricky, but she trusts me with her voice. I try to be general when I ask questions so that she doesn’t just do me a favour because she’s nan. I would hate to put words in her mouth. Saying that nan and I have been discussing this at depth. Nan said yes and no. She doesn’t think people that aren’t diagnosed are “living with it if they don’t have it” but that the effects of it do affect the other residents they are living with it too.
    Thanks for such a thought provoking post xx

    • Thanks for your comments too, and for elaborating from our twitter chat. I recall contacting you some time ago about this topic ? It is definitely thought provoking, but mostly well done for being such a great support to your Nan. I still miss mine, even though she died in 1977. xox

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

  6. Such a crucial blog Kate. I agree that this really does matter well beyond semantics. I’ll try to avoid repetition of what others have said & just say that those caring for people living with dementia may take a break from at least some aspects of dementia. I need to default back to you Kate as to how people living with dementia may manage to get a break from the disease, but that feels like one of the fundamental points of difference here. I think your blog highlights just how frighteningly absent the voices of people living with dementia actually are. I appreciate your acknowledgement that you don’t speak for everyone with dementia, but I’d still prefer what you have to say about dementia from the inside out, even if it breaks my heart to hear it when I think of loved ones past & present who have/had dementia.

    Your contribution is essential and valuable beyond words Kate & I hope we continue to hear your perspectives for a very long time.

    • Thanks Deb, for your words, and for joining this important conversation. I will continue to speak up via this blog and in other ways for as long as I can, to make sure the ‘voice’ of at least one person is loud heard clearly, by at least some who do care. xox

  7. Kate,
    I have described carers as “living with dementia” in my blog in the past but having read your thoughts, I’ll think twice in the future. I, and the many thousands of others with relatives living with dementia, perhaps live with the impact but the last thing I want to do is to deny a voice to anyone. Sadly, my mother no longer seems to have a voice of her own so I want to speak for her if I can. I don’t want to aspire to any more than that.
    Thanks, as always, for your thoughts. They help me and I look forward to your blog every day.
    Duncan

    • So sorry to hear your mum no longer has her own voice… this is such a very difficult time. I guess it is also part of the reason I speak up now, while I still can… thank you for your kind words, and I am glad my blog is useful for you. Take care…

  8. Thanks for this thoroughly thought provoking piece Kate. I neither have nor am the partner or carer of a person who has been diagnosed with dementia but I have spoken with a few of each in my time. My response at this point is to suggest that the best anyone not actually living with the disease, indeed any disease, can do is try to understand. This can be said, too, of the fact that only a carer can understand life as a carer. 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.

    • Thanks for your reply Philip… as you will see it was perfect timing as I have included a little of it in todays blog!! As always, you speak so well, and I am really looking forward to reading that PhD you are intending to do!!!

  9. I think it’s very sad you seek to exclude the experiences and feelings of others. My dad would have deplored the hierarchy you imply and he would have rigorously challenged your exclusive position in health and post diagnosis.
    Please don’t assume you speak for everyone.

    • Seeking to exclude the experiences and feelings of others is the very last thing on my agenda… giving a full and inclusive voice to people with dementia is all I ask, and not having others claim by inference, that they are living with this disease, but rather living with a person who is diagnosed with it, and then talking about their own experience – as a carer or loved one of that person, or service provider or researcher … just another way to think about it. I have never meant to presume to speak for everyone, I am merely speaking from my heart, and expressing the thoughts of those people diagnosed with dementia who I have talked to. And it is ok for us to agree to disagree…

  10. I strongly disagree with the view you posit. The UK dementia friends campaign is based around ‘living well’ with dementia. I don’t like negative language like ‘victim’ or ‘sufferer’ either. The reality is that the people around a person who has a diagnosis are indeed ‘living with it’ they experience it in an increasing way as the person who has the diagnosis requires greater support and understands their condition less.
    My Dad died in February 2013. His last year or so were wonderful BECAUSE of his AD not in spite of it. Yes it became increasingly more difficult for my Mum, for me, my Brother and my little boy BUT my Dad was happy and loved and cared for until the time of his death.
    His death leaves a huge gap in my life so I continue to ‘live with’ dementia and it’s aftermath.
    Please don’t feel the need to be partisan or exclude those who are committed to making society more dementia friendly, I don’t have a diagnosis of dementia, but I have lived with it and continue to do so in my work, voluntary work, fundraising and as a member of the human race.
    My experiences of living with dementia have made me a better person.

    • It is ok to disagree… however, I would still like you to consider your last sentence, and think about how it reads to a person with dementia. I would say, “Your experiences of living with a person with dementia made you a better person”…

  11. Hi Kate, this post really made me think and reflect on my own behaviour and blogging, a brief chat on twitter brought me back here for a better discussion. So first up, thanks for the post 🙂

    My Dad died last November. He was 65 and had been diagnosed with a rare form of cancer (cholangiocarcinoma; cancer of the bile duct) days after his 60th birthday. Up until now I would have had no qualms to say ‘I lived with’ Dad’s cancer….I’m not for a minute meaning to infer I literally had it, but I did literally live with the impact of it. His illness, his treatment and his death had a phenomenal impact on every area of my life, my relationships, my career, my sense of self, my experience of being a daughter. Over a year later I still sometimes feel that I live with the impact of his cancer. I’ve been blogging for the past almost 4yrs, sharing my experiences, but I’ve never done so in any way to ‘take away’ from it being his life, illness, acceptance and death. Never intentionally anyhow and your post really made me think.

    So here come the questions….
    I guess what I’d like to hear more about is whether it’s a semantic issue that you are picking up on, or whether your experience is that you are denied opportunities/others are afforded them as a result of ‘your’ dementia? You mentioned carers and researchers, I’d like to know more about your experience if I may. Do you think people are ignorant to the impact of their language or using it intentionally?

    Thanks for this post Kate, really made me think.

    • Hello. I am thrilled you have swung by here and commented. I’ve had a quick look at your blog too, and will definitely go back and have a longer read. So sorry to hear about your dad, losing someone you love is devastating and the grief lasts a long time.

      I’ll try and answer your questions…

      I think it is more than semantics.

      People with dementia are denied many things in society once they are diagnosed, and face many negative things including stigma, discrimination and isolation. The thing they are denied the most is having a VOICE of their own, and it feels like those not diagnosed are claiming our voice when they say they are living with dementia.

      Would you not be able to say, you are/were living with a person diagnosed with dementia, and experiencing what it is like from the carer or loved one’s perspective?

      Many times now, it seems as if the words ‘Alzheimer’s disease’, ‘dementia’ or ‘Living with dementia’ gets people attention, funding, book sales, research grants and so on. It is currently the big ‘In’ thing to be talking or writing about, and researching. Using the term ‘Living with dementia’ gives a credibility to those wishing to make money out of ‘us’, an extra authenticity, but it denies it to PWD, by assuming our voice.

      It is a very tough topic, and I know I will offend some, and others will agree with me. I do not presume t speak for all people with dementia, but can say that so far, everyone I have spoken to (with dementia) agrees with me.

      In a landslide election win, it would be unusual to get even 50% of the vote…

      • Hi dear Kate and other dear people who are living with dementia, and others who are living with those who have dementia; I know it’s late/early and I’m a bit more than a little tired..but thanks for your posts.

        I’m a Registered Nurse who is working in this ‘field’ and currently taking a bit of time off the study of a new Bachelor of Dementia Care (through UTAS). I know that some people seem to think it’s a matter of semantics (usually the ones, it seems, who are wanting to say they live with dementia – when they are actually meaning they live with someone who has dementia). It may seem like semantics to them, but it doesn’t to you, and that should be enough. As you have said so many times, it is your opinion (and the opinion of those with whom you share this diagnosis). It is hard. I am so saddened to read of those who want to take it the wrong way and get up in arms with it – I know it’s coming from a place of feeling wounded/hurt etc because of what they are going through or have been through, but wouldn’t it be great just for us to get over ourselves and just read what you have written and think on it without the emotional stuff getting in the way? I know sometimes when I read something in general media, I may have an emotional reaction and write quickly – but I then choose not to send it – I reread it later…I have got it off my chest…to myself! I don’t need to make the world a poorer place by vomiting my blaggggrrhhhh all over it.
        Hope this makes sense.
        I do wish everyone peace and joy and safety and health. I am sad that you have dementia, dear Kate (you are one heck of an amazing person); and I am amazed at the strength of you and my dear patients and their families and the staff I work with (plus the readings I’m doing for the course – I have a long way to go with each of my 46 residents – they are all so different and all at different stages of this dreadful illness/disease). I wish I could say that I am always patient and respond beautifully throughout the whole shift, but I do hope that I am learning fast and applying what I’ve learned even faster.
        Thanks dear friends.
        Happy New Year!

      • Hi Shelley, Fab news you are doing the UTas Bachelor of Dementia course. I’ve enrolled in a Masters in Dementia Care at Wollongong Uni (online)!! For me, not only is it personal, it is a truly engaging and meaningful activity, that also works on the neuroplasticity. We will have to swap notes!! I love what you have written, so respectful and thoughtful. Your residents are lucky to have you. Happy new Year to you and yours. xox

      • Hi Shelley, you replied to my comment so I felt it was important to clarify something. You state ‘I am so saddened to read of those who want to take it the wrong way and get up in arms with it – I know it’s coming from a place of feeling wounded/hurt etc because of what they are going through or have been through, but wouldn’t it be great just for us to get over ourselves and just read what you have written and think on it without the emotional stuff getting in the way?’.

        As I understood it (please correct me if I’m wrong Kate) this post was shared in part to generate discussion and debate. I’ve been really impressed with how this has happened, and how Kate has supported that discussion, reiterating that it’s not about ‘needing to agree’. I really live in hope that we can all ‘get over ourselves’ and pass no judgement on those who hold differing views, or seek to understand further.

        If we truly wish to be compassionate, supportive and person centred then surely we need to start with accepting others will hold different viewpoints, and they’re not denying Kate her’s, or ‘taking it the wrong way’, or ‘getting up in arms’. I certainly was seeking to understand more about Kate’s viewpoint, to challenge my own thinking, not to ‘prove her wrong’. To some extent I think anyone engaging in this discussion is already exceptional to the norm; we care enough to read, comment and seek to understand more – I hope that we can all keep supporting that and grow our understanding together. Good luck with your course, and I hope we can talk again, George

      • Thanks for further thinking and comments… in a way, we are all a ‘little up in arms’ because we all care! And how wonderful we are all talking together, about issues that really matter to us. Engaging in what is obviously such a ‘hot topic’ is incredible, and I thank each and everyone of you for swinging by here, and making the effort. #koalahugs to you all xox

The only thing missing in this global conversation is YOUR voice... Thank you.

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s