All people with dementia and those who are supporting us are survivors, not victims. Dementia is truly one condition that tests everyone in so many different ways.
Resilience and Optimism may help, but are hard to grasp or hold onto on the bad days!
We need perceptions and attitudes to change and positive discourse and discussions to move away from deficits to supporting disabilities and what we can still do.
Our families, care partners, kids, parents, advocates and health care professionals… all need much better education.
Families and care partners need much more tangible support to be able to put in the relentless number of hours in every day that they provide to support us. They may do it because they love us, and want to, but I watch on the sidelines as it almost kills some people.
Telling them to put themselves first, to look after themselves, and put us into respite or full time care is not the best or easiest solution for them or us. I know from personal experience; I’ve been a family care partner!
It is an unfunded, under-honoured, and for many, a lonely isolating 24 hour a day role.
Governments, health care professionals and service providers, and advocacy organisations have a responsibility to find the will, and funds to do better for the 50 million of us living with dementia, and the projected 152 million by 2050.
And our families or advocates.
Without them, we’d all end up in residential care, long before necessary.
With adequate support for us, and those supporting us, many more of us living with dementia will become survivors, and not only victims of dementia.
We will mostly stop being the ‘burden’ to families and Society that so many refer to us as…
We are all heroes!
Thank you for coming out so strongly on the side of us care partners! Living with Dementia is no piece of cake but loving and caring for that person is no piece of pie! Love you. Alzheimer’s Assn figures 16.1 million Americans provide unpaid care at a cost of $277 Billion!
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We can’t get through this condition without you (or, if living alone with dementia, without external support)! Fact. Love you xxx
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Thanks, Kate. The problem for both sides is that “Sometimes dammed if you do and dammed if you don’t.” I might add that while at times heavy with sorrow, most often filled with joy and as you say, “Gifts from Life!”
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Agree on both counts xxx
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Beautifully said, Kate! I see the world starting to stir in this direction and it cannot gain true and full understanding soon enough.
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Thank you Kathryne; I’m also thrilled to read you think the world is starting to stir. X
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Perfectly stated Kate😘🤗xxxx
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Thanks xx
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Thanks for the reminder, Kate. Sharing X
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Always a pleasure X
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We truly are heroes. Absolutely 100% no doubt. Sharing.
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Not just care partners Susan… people living with dementia are too. All heroes IMO xxx
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Well, I meant “we” in the inclusive sense: care partners living with dementia and their care partners who are living with it in an indirect way is what I meant. Not sure why you would have taken it as being exclusive… 🙂
Plus, I think I am already transitioning from one side of the coin to the other. Only problem is no one to care with me… So while I don’t have a “formal diagnosis,” I have a “self-diagnosis,” which I think I have enough self-awareness to make. But shhhhhhh! Don’t tell anyone.
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Ah you make me laugh Susan! I’m more confused now than before! And shhhhh, don’t tell anyone either! X
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There were days I wasn’t sure I would survive my partner’s Alzheimer’s. But I did. Sadly, she didn’t. Your article is so good and so accurate. People don’t know what it is like to live with dementia and to be the caregiver
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It’s two sides of the same damn coin… and almost no one provides any of us with education or support! Hugs to you xxx
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As a youngster I always thought my mum Helen had superpowers. I remember in the 70’s when the Bionic Women and 6 million dollar man where hit TV shows my 4 siblings and I watched mum clear a 6ft high fence to save the life of a neighbour. We all were convinced that mum was bionic and she still remains my greatest hero just minus the cape. Everyday mum continues to teach me and keeps me humble and reminds me life is about collecting moments that matter not things. Thanks for reminding me of this with today’s blog Kate, x ness
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Gotta love a bionic mum ness… lucky you xxxxxxx
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Gregory was not a VICTIM, he was a HERO!
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And you are one of my HEROES dear Michael… x
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