Dementia and staying afloat

swan2Well, I am home from the UK, and definitely alive, but not really sure yet if I am awake!

It has been a whirlwind six weeks, and I have really missed my almost daily blogging and the regular chats with friends here, but this trip, it has not been mentally possible to maintain my blog as well as travel. It is one of the more noticeable changes in my symptoms, as the paddling is more difficult, and much more tiring.

The Swan analogy is useful for people to get a glimpse of what living with dementia is like, in that it is like being a swan on a lake, calm on the surface, with our feet paddling furiously below the surface to keep afloat.

It goes beyond that though, as I have realised these last few weeks that having dementia means we never get to dry land.

We have to keep padding to stay afloat, and when we stop paddling – for example, crowds in a shopping mall, airports, travelling, taking a holiday, etc – we can actually sink because we cannot paddle, and the effort to come back to the top of the water and paddle well enough to stay float again is more difficult. I can see in the future, it may be impossible to get back up and float at all, and am understanding why working so hard to stay functional at all is so very important.

For me, living as well as I possible can, and working harder than I  have ever worked to stay afloat, really is the Olympics of my life.

32 thoughts on “Dementia and staying afloat

    • Yes, I know about the meeting. My issue with it is there is no-one living with a diagnosis of dementia yet invited as a key note speaker.

      From the perspective of a person living with dementia, and from my position as Chair of Dementia Alliance International and Chair of Alzheimer’s Australia Dementia Advisory Group, seeing a conference program published with the keynote speakers already selected, that does not in the first instance include at least one person with dementia, does not indicate that this is a priority, and to be ‘added on’ is tokenism and further isolates and stigmatises this group.

      I would have also thought the topic of sex, being covered by this particular event, is even more of a reason to include us.

      The mantra, “Nothing about us, without us” has not yet been realised.

      If there was no-one with dementia locally who wanted to speak, there are well over 47 million people with dementia global to choose from.

      The notion of dementia friendly communities, which Alzheimer’s Australia and many other advocacy organisations around the world are working on, means you cannot be dementia friendly without including us in all events and conversations about us, and, at the beginning of the very conversations.

      ps. I removed your advertisement for the conference, as it is already online via their conference website. This site is for conversations, not promotions.

      • Hi Kate , I was not advertising for them , it was merely to see if you were told about the conference , I suspected as you have confirmed , that it is just another pat themselves on the back load of do gooders . I asked the media rep specifically if any one with dementia was a speaker , and she replied to me that there was someone , but I could not see who that was , she also said that you had been informed, so you have confirmed my feelings.
        I was toying with the idea of going , but at the moment it looks like a waste of time , I suspect it is the usual crap,about little old ladies and gents being allowed to hold hands in nursing homes. Too many frustrated Doo gooders , I wish they would get real , sorry , I rant on , keep up your great work , bit by bit it will get there , they offered no help at all when my wife got hit by dementia at 54 , but I am chipping away at them , best wishes Noel .

      • Thanks for the update Noel.. and together, we must keep chipping away! Why would we bother to pay to go, when they do not properly include us???

  1. Hi Kate, sorry I couldn’t get to see you while you were over here in sunny(?) Britain. Nevertheless take a well earned rest and keep on being the inspiration you are. Keep paddling in your #olympics You get my Gold!

  2. Thank you for sharing this insight into what having dementia is like for you, Kate. My Mom described having Alzheimer’s as having “cobwebs in my mind.” I’d like to use your image in one of my blogs, to give others an inkling of the resilience and courage persons diagnosed with dementia and Alzheimer’s have in their day-to-day lives.

    • Hi Vicki, cobwebs is not a bad way to describe it either! and of our,se you can use my blog and image if you wish. The image was sourced originally from googleimages.com

  3. Really happy to see you back Kate 🙂 And you are in the lead when it comes to the biggest race in your life ….. you’re putting in so much effort to keep ahead 🙂

    And about having to “stop paddling” …… this can also happen if someone’s other symptoms make it difficult for them to keep plugging away. For example, if horrendous fatigue makes it difficult to sit up and think clearly ….. I know from personal experience!!

    Keep chipping away … you’re doing a marvelous job at looking after yourself 🙂

  4. Welcome home Kate. You were missed. I do hope there were some enjoyable and relaxing times for you during your trip. Take care.

  5. “Gold Medalist Kate Swaffer Captures Hearts & Inspires Millions Worldwide in Olympics of Life.”

    Pretty much says it all really. I suspect you would never have settled for silver or bronze. #justsaying 😉

  6. I must say as nice as it was to meet so many really nice people while we were away, it is nice to be home with my darling wife.

  7. Kate, When my mom was still alive, we acknowledged that often words were not good enough to express our thoughts, feelings, and love for each other. So we should send each other a blank note card on birthdays etc with one word inside that symbolized this: “WORDS” it would say. So I am sending this to you regarding this post: “WORDS”

The only thing missing in this global conversation is YOUR voice... Thank you.

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