Ramblings from the past, as I think about 2017…

World Dementia Council members 2016

World Dementia Council members 2016

It is already mid January 2017, and I’ve not yet posted a blog, so am hoping to rectify the today! I started this ages ago, but have had trouble paddling since December so have not achieved very much at all. Anyway, it may be worth looking back and reflecting as we prepare for yet another year. The years certainly fly by so quickly as one gets older, which I wrote about many years ago, but cannot find that particular blog.

As I have a lot of new followers of this blog, I thought I’d highlight a few from over the years (easier than writing a new one, by the way!). The grief of dementia is one of the most unspoken of topics, not our grief families feel as we change and lose function, then die, but the grief we feel as we lose capacity and as our abilities change to disabilities, and we are still living in a society where they are not supported like anyone else with disabilities. When I first found the word hiraeth, it  seemed to resonate strongly with the losses of dementia.

Losing one’s ability to remember, to speak, to find the words we want, to be able recall names and faces, and the deep sense of loneliness most of us experience, is difficult to live with dementia, and makes each days paddling that much harder. When I searched on my own blog for musings on loneliness, I found quite a few blogs on that topic, so it seems it is something that haunts me a lot.

One of the most common, and possibly the worst part of dementia, is being told, “but you don’t look like you have dementia”, and it is offensive, hurtful, and actually many say it makes them feel like frauds even when they know they are not. This has become an ethical issue and perhaps is even a legal issues we should be exploring, as it offends not only us, but puts our medical specialists into question as well. There are quite literally millions of people living with dementia, and until the very late stages of the disease, none of them look like they have it!

The image I have added today is of the World Dementia Council, taken last year, and I am not the only person on the council with dementia. Unless you  know them personally, I will almost guarantee you cannot pick who else on this council has dementia!! In Perth at the ADI2015 conference, there were more than 110 people with dementia in attendance, and similarly, it was impossible to pick them from the delegates list of more than 1100 people!

The stigma of dementia (little has changed since that report), the discrimination and ignorance of some towards us, as well as the disrespectful language still so systematically used to refer to us, makes it so much harder to live with a chronic, progressive and yes, a terminal illness. Oh, and the bullying can be intense, and still causes me to be ‘gob smacked’ that people without dementia, could be so mean to anyone, let alone to people diagnosed with dementia.

Most of all, I urge everyone diagnosed with dementia to ignore the well-meaning Prescribed Disengagement® we are still being given, which is not only poor advice based on late stage dementia not early stage, but also lacking in a human rights approach and I believe to be unethical post diagnostic management, and to Live Beyond Dementia.

Oh, and if we could love each other more, respect each other and accept we may have differing opinions on some topics, without being mean, that would make it easier to get through everyone’s days as well…

My BUB, and my two sons and a few very special friends make my world so much easier to live with. Thanks to them, and thanks to you all here for you reading my blogs, and for your online encouragement and support.

16 thoughts on “Ramblings from the past, as I think about 2017…

  1. Kate, I saw you recently on an ABC interview and thought you spoke so well about living with Dementia. I work in a Community Centre (Planned Activity Group) and have Clients (Members) with different stages of Dementia and yes, it is a terrible disease. It is hard for people to see those with Dementia saying things that is totally out of character or doing things they would not normally do. So many people associate Dementia with an “Old Persons Disease” and are oblivious to the fact that Early Onset is becoming more prevelant (and is more aggressive). Good on you for spreading awareness that you do not have to be “old” to have Dementia. Good luck with Australian of The Year Award you are so deserving of it and never give up! Tracey

  2. Pingback: Australian of the year 2017 – National finalist – Kate Swaffer | Dementia Resources

  3. What I always find humbling is your commitment to articulating your thoughts and experiences in way that moves people forward, rather than dwelling on what has happened/could have been. Rest easy while you can, dear Kate; enjoy your BUB and boys and the friendships that sustain you. And be assured that your words carry far more influence than you can ever imagine. much love, anita xx

  4. Reblogged this on and commented:
    Excellent writing from Kate Swaffer, with links to some of her previous posts. Her blog is essential reading for anyone who works with people living with dementia.

  5. As always so well said! I too was moved when I came across the word hiraeth. (The homesickness for a home to which I cannot return, a home which maybe never was; the nostalgia, the yearning, the grief for the lost places of the.) I do not know if Gregory dealt with this much but I know I did, not only with his dementia but with many aspects of my family and life which I often call “Missed Opportunities.)

  6. Dearest Friend Kate, This is so heart-breakingly important that after I tweeted it I posted it again. It’s little enough, but it’s sure to move each person who reads it. Just another pebble in the creek. With my love and best wishes for 2017, Mary

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