Motivation to continue as an activist

Life with dementia is one very tough gig. Being a dementia activist though, makes a diagnosis of dementia seem easy!

There are 24 hours in every day, and for about 18 of them, when I’m awake, I am constantly thinking of giving up my activism and even the more moderate advocacy.

Thankfully people do appreciate it, and let me know, which is extremely helpful to stay motivated! I never advocate or write for the purpose of being liked; clearly I write a lot of things that others do not necessarily find endearing!!

The saying goes, as an activist, if you start to upset the apple cart, and people start to ‘hate’ you or ‘abuse’ you, then that usually means you are doing something right. There are a lot of newer friends I’ve made through DAI also getting involved with activism and advocacy, and it is frustrating to hear from them they are experiencing much of the same. As they become more vocal, the ‘haters’ seem to want to join the party! I realise this is not a very eloquent way to put it, but my words are not coming easily today. It is what it is!

One friend told me yesterday, she was accused of ‘wanting to be pitied’ because of her speaking out publicly. What bollocks.

We only speak out, because we want to improve it for the next generation(s) of people being diagnosed with dementia, as the deal we get now is below the standard of human rights for any other with acquired disabilities. As advocates or activists, we all keep each other going, especially on the really bad days.

Positive feedback also helps us to keep going.

Negative feedback does as well, and is useful in helping you to think about things in new ways, and perhaps to remove the emotion or bias that a we all have.

The real value of positive feedback, at least for me, is that it can motivate me not to give up, and I ‘found’ the message below, in an email received on January 1, 2018! It was exactly the right day to read it as I had been on the couch crying, finding it almost too hard to stand up, let alone be active. Whoever says the Universe won’t support you, has not really asked it to! Thank you JP, your support is truly appreciated.

JP wrote: 

Dear Kate:

Somehow Word Press did not accept my Gmail password. I wanted to post that John Wesley could have been describing you when he wrote:

“Do all the good you can, by all the means you can, in all the ways you can, as long as ever you can.”

You are the Voice and Heart that this Unknown Author wrote about when he wrote:

“One voice can speak with wisdom. On heart can know what’s true. One life can make the difference. It’s always up to you.”

I feel very blessed to know you, Kate; and very grateful for all the encouragement and hope you bring to so many people you don’t even know!!

Wishing You an Inspiring 2018!
With Caring & Admiration, JP

This person may never know just what this email has meant to me, so if you are reading this JP, please know it has truly made a difference to my life, and I too feel blessed to have you in mine, albeit at this stage, only online.

34 thoughts on “Motivation to continue as an activist

  1. Kate, you are one person that I wish that could promise me that you will live forever for your words have a spirit that is alive and brave and prepared to face anything. I wish I had half your courage. In the days that come I bid you hold on to those things not only because you need them but because we need you to have them. I do not have dementia, yet I look on the future with despair and fear. I am now 65 and naturally fear old age and the time when I will lose my independence as the days roll on and the suffering involved in simply staying alive inevitably increases. Others would say I am being negative. I would answer NO I am merely being realistic. Suffering and old age are inevitable conclusions but you have demonstrated to me that courage is not something that deteriorates but endures. What the heck am I talking about? It is simply this. Never ever give up being you!.


    • Dear Colin, what truly lovely comments to read. I’ve not been up to blogging or much else these last few days, and had not logged on. Thank you so much for your kind words, they do mean a lot to me, and I am glad you find my words useful. Take great care xx


  2. Bless you Kate – may you truly continue to be the activist you are by all the ways and means you can for as long as and wherever you can. You are phenomenally inspiring. Thank you!


  3. My friend
    All you wrote is so true for me – for many of us who are „ on stage „
    People can not accept that we / pwd are eloquent – smart – maybe even more than they are !
    Their narrow mentality doesn’t allow them to see our value !
    I myself get angry – get sad experiencing this attitude : selfish – ignorant – seing only my disease !
    BUT my new way is : I pitty them for their inability ! It makes me go on in my raising awareness – it makes me strong to know people like you Kate .
    There is a kind of wisdom in our fight for our rights AND it is monumental !
    Together we are strong my friend 👍


  4. Kate, you never fail to inspire me. Thanks for this reminder that, when we’re feeling discouraged, we need to remember the big picture. I also wanted to point out (vis-a-vis your friend who felt judged) that there’s nothing terrible about wanting to be fawned over, either. I know the word “pity” has fallen out of favour, so maybe that’s the wrong word, but I do think it’s OK if my mother is feeling sorry for herself and/or needing extra reassurance and loving comfort in the form of compassion (not pity). If speaking publicly is a cry for help or attention – again – so what? We need all the help we can get in Alzheimer’s world.


    • We sure do need all the help we can get, not sin the sense of eople taking over, but in terms of closer friendship and support. In reality, that is what we most lose, and frankly, is far more damaging to our lives than losing cognitive functioning. People with dementia and our families need our family and friends MORE than ever before, and instead, a significant proportion of them disappear…


  5. Kate good morning!! Thankyou so much for continuing your work so effectively! You are amazing. I am a retired RN living in British Columbia Canada. 30 of my 43 year career was spent in the field of geriatrics. I was called to this specialty when I realized that our seniors with “senile dementia” what a nasty term were being marginalized, mis treated and unappreciated. I never regretted my choice!! I spent those years of my career advocating and at times demanding on behalf of the people who entrusted me with their care. I saw much change for the better but definitely still not enough! I did not usually make many friends among senior administration, chiefs of staff or local politicians. I didn’t care one bit and am sitting here smiling while I remember some of those adventures!! I still care and keep up to date on any advances in care and encourage people I come in contact with to take advantage of education and opportunities to improve the lives of their loved ones with dementia. You are such an inspiration and I encourage my “peeps” to follow your work! You are one of my favourites!! Hugs and best wishes to you!


    • Thanks dear Donna… your comment about not making too many friends amongst senior administrators and others made me laugh out loud! Clearly, you were clearly doing a great job! Thank you for caring, and for joining the conversation here. x


  6. I’m with you both, ladies. Sometimes the batteries are very low. When looking ahead at the rest of my life, considering what I value most and how I want to spend it, the path is unclear. Balancing self-care with family and advocacy can get muddy. However, all of it together provides a rich existence that ebbs and flows. #embracingnow with the help of lists and resets. #noregrets


  7. Thank you doesn’t even come close Kate to how much you are appreciated my friend for what you have taught me about my mum. I couldn’t be luckier to have you as a friend and inspiration. I look at you Kate and see one of the strongest and courageous women I have known. You are a light in the lives of those who love you and an inspiration to those like me who have who cross your path. With much love and gratitude Ness


    • I agree with Vanessa Kate and although i have never met you(probably like Vanessa)i am very privledged to call you a “friend” and an inspiration. What Vanessa has said is so true and i so agree and i am not sure where i would be without you support. Thank you so much


  8. Thank you Kate, you are so much appreciated. You shine a light before us. May I quote your unknown author – I haven’t come across this lovely saying before.


  9. Very true Kate and i love you motivation to become an activist-good on you and very proud of you!You are an amazing human being who has made a massive and wonderful difference to Dementia and i am so blessed and honoured to follow your blog. I really appreciate and admire you too, and if i didn’t follow your blog i am not sure where i would be at-that is the reason for me coping and keeping going particulary on the bad days when i feel upset about Grandad’s health. Thank you again with all my heart and looking forward to meeting you when your in Auckland😊💜👍👏PS Good luck with activism!👍👏


    • It seems as if you are also becoming an activist or advocate for dementia Sam… good on you too! we need young people to become engaged and interested enough to care. Thank you xxx


      • Your most welcome Kate-i have started my awareness in small steps by doing a memory walk-i have written comments on my T-Shirt-it was a great walk for an even better cause and wonderful to see so many people raising awarenesss about it. Yes, we need more people like you


  10. One has to have “fire in the belly” to really be pushed to accomplish impossible things we know – but there comes a time when those in that situation have to put themselves first with self care and know they are not lesser people? We all just have to honour people like you and be grateful that you exist. 💐🌹👍🏻🙏🏻✨ blessings


    • One of my dear friends wth dementia in the USA talks about how the impact of the ‘haters’ effects him, in terms of the fragility of his brain, and of his ability to cope with it; how it seriously impacts his ability to ‘paddle’ or function. Once he could brush off nasty gossior someone being hateful, not it can take him weeks to recover. It is sad that those who throw these metaphorical punches at us, don’t seem to care about that fact. We all feel the impact of it, and find it so much more difficult to function at all when it happens…


  11. Hi Kate,

    You are making a positive difference in the world every day, even when you sleep!

    I can honestly say that you have changed the life of my family (all the way in the US) and helped us more successfully support my mother through her diagnosis and beyond. So it’s not just the next generation you’re helping, but this one, too!

    I would love to meet you some time (I’m in Adelaide, too) as I’m working on building systems to support people with dementia (starting with my mom) staying as integrated with their life as they can be. Feel free to reach out to my contact info if you like.

    Either way, thank you for the work you do. You are a very bright star to so many of us navigating these waters together.


  12. Thank you Kate you a inspirational. I knew nothing about dementia when two family members were diagnosed with it. It is through people like you and Susan who inspire the rest of us. Just keep up the good work ( frankly I don’t know how you do it).


  13. Hi Kate, Thanks for this. Just remember for every ‘hater”, there are dozens and dozens of “lovers”. The letter of appreciation that you posted is representative of how so many of us feel. Am sorry your friend is receiving negative comments….as you say it is par for the course and highlights the need for us to continue the fight to improve the community’s understanding of what it is like to live with dementia. Take care. X


      • Hi Kate, If we can get the ‘haters’ to turn around (they must read your material as they comment) they could become our strongest advocates. They are obviously passionate about their beliefs even if at the present time they don’t understand. Many of them are sad lonely people.

        I watched a TED talk the other day and saw a man who had been a white supremacist leader for several years – once turned around by strong advocates like you he changed and has spent the last eighteen years turning around others, particularly youth who are ignorant of facts and only looking for attention and a group to belong to.

        So let us try and inform the ‘haters’, turn them around so they become our strength in turning others around. Nothing like a person who has seen the light to convince others.

        Keep up your wonderful work Kate. You are an inspiration to many and doing a job many of us are incapable of doing even those of us without dementia. x


      • Exactly… it is why I don’t let them stop me. Ignorance and unkindness is their problem, says nothing about me. The old adage of looking in the mirror to find out the truth, as painful as it can sometimes be, is true! Thanks for your support, it means a lot xx


  14. Life with (and without) dementia is one tough gig.

    “There are 24 hours in every day, and for about 18 of them, when I’m awake, I am constantly thinking of giving up my activism and even the more moderate advocacy.”



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