It seems I have written on
Who’d have known
It’s more pain than joy
It polarises people
Sadly makes it more ‘them and us’
People without dementia everywhere
Wanting large pieces of the proverbial pie
Using people with dementia
To take sides and support their business goals
Or their personal agendas
Being referred to as That woman…
Hurtful and deeply unkind
Talked about behind my back
Worse than yelling in my face
As one aged care executive did to me publicly
So please…
If you won’t say it to my face
Then please
Feel free to hate me
Feel free to disagree with me
But please keep your lips sealed
Stop hurting me
Which also hurts others with dementia
As today
Quite frankly
There is no doubt in my failing and fragile mind
That I have had enough instruction!
Strong words Kate. You make me wonder what my personal agenda is in being an advocate & if I have any place other than supporting one person living with dementia who sometimes needs an “interpreter”.
I’ll go fo a walk & think about it.
For you my dar friend, I think your personal agenda is probably pure, i that you want to support your beautiful vibrant Veda. Plus, you have worked in a similar sector, and have an incredible amount of knowledge that yo can bring with you, that is incredibly helpful in our collective activism. Stay true to you, stay true to supporting Veda to speak for herself, in whatever way she can, and know that I LOVE YOU both like sisters. xx
Thanks Kate…I always will. Mind you, my motives are not entirely pure – that need to work! 😉
big hugs to you both ‘Doll’! xx
oh dear 😦
Oh well… x
Thank you for your struggles, for yourself and us all, for being inspiration and example. Take things easy some though too, as needed/desired. You have given others roads to follow, and others need pick up own torches some, and light our ways, dissipate our fears, and spread warmth, courage, justice, and clarity into all the corners of this globe! Thank you, Kate, and all advocates and allies. 🙂
Big hugs to you too Wendy xxx
Reblogged this on Alzheimer's: The Journey and commented:
“Who’d be an advocate . . . ” , beautifully written by Kate Swaffer, shows the side of having a Dementia Related Illness not many people see or understand.
Thank you Kate, for being a beacon, a truthteller, a wonderful human being!
Thanks for sharing Brian, and for your support x
I’m so sorry to read this Kate. I am very sorry for your pain. My very kindest thoughts and well wishes. Denise x
From my recollection dear Denise, you have been in this exact spot not so long ago… hugs tight back at you xox
Seems wrong to like these words as what is happening to you and how you are being treated by some is very wrong, rude, inappropriate and unforgivable . You have my 100% support and I know many others too. Thank you for teaching us and I’m sending you energy to stay strong. Hugs too, Toni
It happens to lots of people, not just me, but especially to those of us who stand up and speak out against what they see as injustices. I simply write about it here, to give the whole story to my experiences of living beyond dementia. thanks for the hugs too xx
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