Recently I was interviewed by Bec Hogan, who is the Deputy Chair of 3C Management and is creating a social change project with the ‘Dementia Heroes Month’ Initiative. Bec is an Aged Care Consultant in Consumer Engagement Strategy & Creative Digital Content, and this series of podcasts runs throughout September, highlighting people she refers to as Dementia Heroes. I doubt I am a hero, but am delighted to be included in her list! This is the recording of the interview. I will probably get into trouble for a few things I said, but hey, that’s the almost daily experience of a dementia or disability rights campaigner or activist! Thanks anyway Bec!
Thanks for telling it how it is Kate. Never stop being controversial. Being polite only gets us so far, then we are seen as being easy to set aside or downgrade unless we become more demanding. My local authority refuses to give me support because by their rules I am only in need of a supporter when I can no longer wash/dress myself. COVID has just given them another reason to offer no ability to support my independence.
Lol 😎
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Dear Julie… thank you. Your support means a lot and as I said to Mithrani in my last comment reply, I’m sorry advocacy has as yet, made almost no difference 😥😥😥
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Kate, Your My Hero After being told by Specialist I have Dementia ! I was given no idea what is it,I thank My Library (Local) helping me to get Books about People Living with Dementia.I feel so Lucky to have been able to read your Books.
Thanks you saved My Life ,cause the only info I was told look for a nursing home by the Specialist !Now I have a Life ..living more happily even with the progression of My Dementia.
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Love you dear Mithrani and I’m so very sorry my activism of more than a decade, and the advocacy of so many others for over two decades, has made no difference to the immediate post dx experience xxxxx
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Love Kate, your books saved my life ,I was so depressed and wanted to give up on life ,when i saw the support i had after my cancer diagnosis, and with Dementia was told to go home and look for nursing Homes and to get my things in order. If anyone can change things its You Kate and DAI ,It has Made a difference being in the support groups and much more Now I have laughter in My journey with Dementia,Thanks to You Kate.
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I’m so glad they helped dear Mithrani, and also that DA and DAI have. It is such a lovely experience without support. Love you xxx
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Hi Kate really enjoyed watching your conversation hearing your frustration makes 😢and 😤 that we are not as a collective or individuals making positive inroads to change how we listen to what is important to people living with dementia. Miss you 😘ness
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Miss you too Ness xxx
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Kate, you are so right. I wish I was still in Sydney, fighting the good fight. I am working in Care Homes now. I deliver Person-Centred Dementia Training as I did there, but for the most part I am hitting my head against a wall. A significant proportion of the people attending my training argue that people with dementia must be looked after, kept safe, kept clean, watched over, full stop. Freedoms are denied because of the ‘disablement model’ that persists. See the person living with dementia, feel their emotions, ‘they’ ARE ‘us’.
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It breaks my heart to read your comment… but I’m honoured you are so honest. We must all find a way to do better. Keep up the good fight and thank you for all you do xxxxx
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Kate, I disagree about community awareness work… IF it’s genuinely community based & not some big PR campaign to raise funds for a “charity”. 😉
It’s about giving people in the community a “licence” to speak, ask, tell their story, name their fears, “come out” from behind closed doors, meet others.
The real issue is that there’s not much that’s reassuring about supports that might be available, what might help, how to fund that. It’s a labyrinth that requires “navigation”, literally.
We care partners/advocates feel (& know) that our skills/competencies/capacities are grossly inadequate, at least to start with. As time passes & as the person we support needs much more to just keep going (if they so wish), we see the gaps, the silos & we reach a dead end, where there simply aren’t the supports that are so badly needed.
That’s when, as Rosemary Kayess said recently, we know that we are fundamentally “dispensable”. So we either fight or give up.
It’s not even about productivity or lack thereof -it’s about actuarial risk. “You mob cost too much & you’re going to die anyway, you’re ‘pre-palliative'”…& so you’re excluded from critical care.
(See recent statements by Colbeck, Morrison & Abbott)
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Dispensable, and no longer of value, except perhaps to help others raise funds, is exactly how we’ve become, people with dementia and our care partners or families.
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Most certainly a hero, Kate 🙂
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xxx
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I think you definitely are a hero, Kate! You are a voice that is not afraid to say what must be said!
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