The new narrative of dementia pt 2

Too often I watch an interview of a care partner about life supporting someone with dementia, and they speak with incredible love, but often in paternalistic and patronising ways. In this way they subconsciously continue the myth that people with dementia are the ‘real sufferers’.

What they are really expressing, in my mind, is their own suffering, as they watch us change, and ultimately, watch us die. My BUB agrees with me, which is not always the case! We’ve both been a care partner to others we loved, and sat with family and close friends as they took their last breath. I still suffer when I think about it. So does he.

A dear online friend, Michael Horvich always referred to his partner Gregory, who had Alzheimer’s Disease, as his HERO. My husband and BUB is my hero. My two incredible sons are my super heroes. There is no doubt we all suffer some of the time, but we are not all sufferers as if that is the sum total of our experience. Imagine if people with dementia started being interviewed or filmed and only talked about what a burden it is watching our care partners’ suffering… and highlighted all of the challenging behaviours they have. Now that would make for one hell of a PhD, “The BPSD guidelines for care partners and staff.”

Those who watching and support people with dementia are the real sufferers, not us, and we need them to stop deflecting their suffering onto us, as if it is our experience, and find their own new narrative, not just use, convert, reframe or rework ours. They need to find and teach a new more respectful and human rights based narrative or discourse as ‘care partners’ when they speak about us, where we are spoken about with love and also the sadness and very real loss they must feel, but without the paternalism, and the implication of being ‘not all there’ or even worse, of us being a ‘burden’.

Many journalists, advocacy organisations and events organisers still want the ‘sad sack’ stories, as tragedy and suffering sells, and it raises money, but it is doing us harm and sooner rather than later, it must change.

I’m not in any way trying to sanitise the very real devastation of being told we have dementia, or someone we love has it, but the reality is, suffering and tragedy are not the full story. Even a couple of weeks ago, the Chair of one of the Alzheimer’s Australia organisations referred topple with dementia as sufferers in a public speech he made. If the people inside these organisations, who actually have produced documents on respectful dementia language are not bothering to use them, what hope do we have of change…

Not changing to a balanced public discourse about dementia simply keeps the many myths and misperceptions alive, and  increases stigma and discrimination, ensures the pathway of Prescribed Disengagement is followed. It also increases the likelihood of victimhood and martyrdom, as well as the learned helplessness so many with dementia sub consciously assume.

This is often due to care partners taking too much control, talking over or correcting them all the time, even though they are simply doing what the sector currently still prescribes, and doing it from a place of love. But who wouldn’t give up speaking or doing, if they were always corrected, always ‘done for’, or made to feel ashamed or embarrassed for having dementia (acquired disabilities), rather than actively supported to continue to live as independently as possible with them.

I’ve written and spoken about the public discourse and narrative of dementia many times since being diagnosed in 2008, and for this, I’ve been yelled at, bullied on Facebook, occasionally had to block people on social media, and ultimately, publicly defamed by a small group of liars causing me of not having dementia, and a gutter reporter who at no time considered the ethics of how he treated a person living with cognitive disabilities. A friend and fellow colleague Brian Le Blanc writes about his experience of it brilliantly of being accused of faking his Alzheimer’s Disease here on his blog a bit of brian brilliance.

But back to my topic, it really is time care partners found their own new narrative… and people paying them to teach our new narrative, instead engaged us, and paid us to teach the new narrative of dementia we have worked so hard for.

Another great online friend The Amazing Susan just said in a comment on yesterday’s blog:

That also used to happen to me in another life. I too got sick of giving away my expertise. So, when people started to ask me questions, I simply said politely, but firmly:

You can use my exact words if you like. No charge 🙂

Thanks Susan. I’m going to at least send you a big virtual hug for allowing me to use your words which I have inserted into the image above to highlight it!  😉

Ps I must be recovering from the betrayal and defamation, as lit seems I am becoming a bit fired up again here… not sure if I need to apologise in advance, or if most will be ‘glad I’m almost back’?!

 

35 thoughts on “The new narrative of dementia pt 2

  1. AmazingSusan check out Kate’s blogs Jan 2014. I remember where we were when we 3 had that “discussion”. You wrote passionately in defence of care partners in your comments on that blog.

    • I don’t recall that at all Lynda, but have no doubt we discussed it! will also check out out! When I talk about ‘care partners’ sometimes assuming the martyr role, in reality, I also believe that is what Prescribed Disengagement® tells them to do, meaning when the person diagnosed it told to go home ad give up, care partners are also advised they will soon have to take over. It sets us ALL up to fail! xoxox

      • Totally agree Kate.It’s also why we are told postDx to organize respite ASAP…in recognition of the fact that services are inadequate. We are also told that permanent residential care is inevitable (there are efficiencies in numbers!)
        I think we care partners/advocates should have the chance to advise others newly diagnosed on the need to set up flexible, sustainable support and why. However, “support groups” have agendas usually dominated by professionals.
        If we had had the option to move immediately to an ACAT (or NDIS) assessment, where we could have openly discussed our possible needs for the immediate future, with the support of someone who understood the exact Dx, then that would have gone a long way to preventing premature burnout and isolation.
        However, it’s the PLWD who is the client: I’m not sure how soon postDx most people are prepared to think about future needs….unless we all had immediate contact with a dementia specialist social worker, through referral from the diagnosing neurologist.
        That’s where older PLWD will continue to miss out as the YOD KW program shifts its focus to the NDIS.

    • Yes, I remember that one VERY WELL tyvm lol – it was the one in which you wrote you were blocking me and never to contact you and blah, blah, blah to which I referred when YOU invited ME to friend on FB #justsaying #forthepublicrecord :P. And i will revisit it. But this response was different and included an audio link. I am rewriting it…. stay tuned all 😛

      • Haha, well maybe it is just as well I don’t by the sound of it!!! One more get of dementia!
        Anyway, Amazing Women who are Rocking the Boat in the Dementia World are going to go blah blah blah to each other occasionally
        We may have two eyes, but we don’t always have the same view xxxxx

  2. “It really is time that care partners find their own new narrative”. Yes.
    We do get some small voice, through online support groups. Many of us are forcibly silent and isolated otherwise.
    We lack real conversations Kate. I understand that we have no place in the development of an autonomous movement of people living with dementia but I’ve yet to find a place where I can “fit”….other than sharing what I’ve learnt with those who can be bothered reading me.
    We also are pitied. I don’t know how to change it.
    All strength to you, always, dearest friend. xx

    • Dear Lynda, the narrative that’s still so predominant in carers groups are almost enough for me to jump off a cliff. I imagine they are not that helpful for someone like you, as you’d not ever want the suffering martyr role. Real support that enhances and enriches your experience would be helpful. Then we have to watch yet another television program on the tragedy of dementia. Not matter how well intentioned, or produced, it’s just not helpful to anyone. Much love and respect to you Doll xxxx

      • I’m actually horrified Kate at the ignorance of some care partners, and delighted by the amazing knowledge and sensitivity of others in online support groups. What I read behind the ignorance is absolute terror at their inability to deal with the challenges of dementia.
        It’s particularly obvious among people who have lived very narrow lives till now. I’m still thinking about how to frame a workshop around mutual obligations and rights.

      • Kate, I had written another comment in response to your comment which you have not published. Essentially, it was in defence of care partners and said I feel it’s unfair to characterize them as suffering martyrs. I’m wondering if you still have the comment in the back end of your blog and if you do, if you could email it to me…? I want to use the wording in a blog post and I prefer not to have to re-write it. You could sent it to: susan@amazingwomenrock.com please if you have it. Thanks.

      • This is the only comment I’m seeing… none not accepted and none showing as spam which is unlikely yours would end up there anyway… sorry. Somewhere in the ether? X

      • I don’t blame you. I’m getting confused too, because the comments appear not to be appearing in the relevant comment threads and then @Lynda made one in reference to a thread on LinkedIn so anyone in their right or not-so-right mind would be CFU (CompletelyF****edUp). I blame it all on Lynda. She is clearly the instigator 😛 Nothing whatsoever to do with me. #IRestMyCase

      • Or it could be us care-partner-types surreptitiously gas lighting and ganging up to get you @Kate Swaffer bbwwahahahahaha #sorrycouldntresist 🙂

        In any event, the missing comment which I’m currently rewriting disagrees and agrees with some of what has been said and once it’s done I will repost it and this time take a copy in case it disappears once again into that internet black hole into which things seem randomly to disappear.

    • RE: “Susan, I’ve just added my comment to the discussion on Dementia Rights. Do you think that these are supplementary to the Bill of Rights and the CRPD and if so, why are they necessary?
      ‘Cos I’m looking at where denial of rights can be prosecuted.”

      I don’t know because honestly, i hadn’t considered other bills of rights before i posted this one on my blog, but now having heard others views, I can understand why in some senses a Bill of Rights specific to dementia should not be needed. That said, there may be confusion about the rights of someone who is appears not to be a person anymore, so… I see the intellectual argument, and I also see the importance of framing things in a way that helps people to more easily get the message that people with dementia have the same rights.

  3. Hi Kate, your comment about being accused of not having Alzheimer’s brought to mind a panel on which I participated at a conference for medical people and residential care home managers, etc. At the break an audience member approached me saying I didn’t have Alzheimer’s. How did he know this? Look at how well you’re dressed, he said. To reinforce his ignorance I said back to him that what he didn’t know was my wife helped put the outfit together at my request. (Hopefully I haven’t already told you the story but I have to admit it is one of my favourite illustrations of our reality at some conferences.) I hope you continue to do well, Kate.

    • Hi Jim, lovely hear from you. I was also so glad you came up to me in that cafe in Toronto last year and introduced yourself to me and my husband; it made my day as I’d always wanted to meet you. It is all too common that we all hear ‘but you don’t look like you have dementia’ and the very people who say it have NO IDEA what it takes to get through each day, let alone get dressed in the morning. Take care my friend, and I do hope we get to meet again. xx

  4. Interestingly, great minds think alike 😉 (sometimes :P)

    I realized one afternoon in the rain several years ago that I was in fact projecting my own suffering onto my mother. That “aha moment,” combined with several others and a rather heated exchange of comments with you Kate, deepened my understanding of this insufferable issue since when I’ve been talking about the very same thing in posts, comments, etc. In fact, just the other day, I made this comment in reply to a comment on one of my posts on LinkedIn:

    “…your experience is yours and mine is mine and they are clearly different. I believe that in most cases the people around the person who is living with dementia suffer more than the person who is living with dementia and that they project their suffering onto the PLWD. Thus: http://shequotes.com/2014/05/08/shequotes-on-love-and-suffering-quote-life-love-pain-helplessness/

    My experience is that my mother lived with Alzheimer. She didn’t suffer from the disease. On the other hand, she suffered greatly as a result of the misperceptions people had about her and Alzheimer disease which in turn resulted in neglect and abuse.

    I agree with you there are many challenges and lots of pain associated with the process of Alzheimer disease. The same applies to life.

    Kate Swaffer who has been a care partner to several family members and who now lives with dementia herself share insights on her blog here: https://kateswaffer.com/daily-blog/

    The full exchange may be read here: https://www.linkedin.com/groups/126335/126335-6287613273839845378 in which you will see if you investigate that in no way was the person swayed by my arguments.

    I think many people find it extremely difficult, if not impossible, to understand the concept of projection. It’s even more difficult in the case of dementia when the “loss” of the person is so emotionally heart wrenching, and has so much to do with ego and attachment. Add to that all the existing myths, misinformation and stigma, and it’s a miracle anyone at all really “gets it.”

    People who are “ahead of their time” are invariably hated and/or persecuted. Perhaps we should take it as a compliment 🙂 #AlwaysLookingForWaysToReframeShitIntoSilverLinings 😛

    P.S. on a final note, I was happy and relieved when you were blogging less frequently. Every day is too much for me to keep up with as I’ve said before, but no doubt you will ignore me as usual. You know what people who live with dementia are like — stubborn as mules. #justsaying LOL 😛

    • Hi AS… my grandfather used to come back with the quip, “Fools never differ!”… but we are not either, as we agree and differ on occasion, and with great respect and love! Still ROTFLMAO with your comment that people with dementia are as ‘stubborn as mules’… I’ll be sure to ask my fake neurologist for some antipsychotics in two weeks when I see him for my follow up fake Neuropsych tests results.

      I’m so glad we had that initial difficult online ‘discussion’, as look how far we have both come. Progress only comes, IMHO, through agreeing to discuss things openly, honestly, and sometimes agreeing to disagree. e agree on most things, maybe not all, and that is totally ok. Regarding the sentence just before the one I’m still laughing about, I’m about to set up a survey on it! Watch this space, and please answer and share. xx

      • I agree that dialogue is the only way forward, and I strongly believe in this John Maynard Keynes quote, which appears on the dedication page of Al Powers’ first book: “When the facts change, I change my mind. What do you do sir?” I have an open mind and am amenable to changing it when presented with evidence that proves my existing beliefs misguided or wrong. However, I confess to finding it difficult to deal with people who are not likewise disposed 😉

        Regarding the upcoming survey, my answer is “one to three times weekly maximum.”

      • Thanks Susan… and it is because of you, that I have done that silly survey. But regardless of the results, I’ll probably be as ‘stubborn as a mule’ because I have dementia, and do my own thing anyway hahaha

      • Susan and Kate, I remember that discussion clearly! It would’ve been very early in 2014. He he he….
        Susan, I’ve just added my comment to the discussion on Dementia Rights. Do you think that these are supplementary to the Bill of Rights and the CRPD and if so, why are they necessary?
        ‘Cos I’m looking at where denial of rights can be prosecuted.

      • Prosecute away… I’ve thought about it so often and towards to many since being diagnosed with dementia, it’s no wonder I lost my glasses! 😉

  5. Dear Kate,
    I follow your blog, and mainly your insights are important to my understanding of the journey we went on.
    I try to relate your message to anyone who has become interested in dementia. I refer them to your blog.
    In general, the confidence always goes back to the medical profession and drugs. I am somewhat annoyed about this as it made our journey considerably rockier than it should have been. I encourage you to keep standing in front of the medical profession so there is greater empathy to the needs of people after diagnosis.
    “We get by with a little help from our friends” is so apt.
    Jeff

    • Dear Jeff, I often wonder if you’re still here! I’m also glad some of my blogs have been helpful. Special thanks for your encourage too, most days now I’m ready to give up or into dementia. Obviously one day I’ll probably not have a choice… take great care always 💐💐

  6. I’m so glad that you are ‘almost back’! Keep on that path, keep on refusing the tag of ‘sufferer’. Sometimes I think that carers, and even Alzheimer’s workers, emphasize the aspect of ‘suffering’ because they feel it will increase the difficulty of their own role, and, so enhance their own worthiness. Whereas all it does is drag down everyone.

    Much love to you, Kate!

    • Thanks Trisha.. I’d not thought of that as being one of the reasons why; thanks for the food for thought, and at some stage, perhaps a blog on that topic. Love to you too xx

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