Dementia and independence

Image source: Google images

Image source: Google images

Claire De Boer on her blog How Are You Using Your Words?  wrote when talking about a friend with mental illness from alcohol and drug abuse: “… I’ve felt like I’m scooping a baby bird with a damaged wing into my arms. She feels so broken. So fragile. I would like to be able to rescue her, but all I can do is come alongside her as a friend, because there’s so much that’s out of my control. So much where others must step in. And so much she has to do for herself.

In many ways this is true for people with dementia, and there are certainly days we can feel fragile and broken, especially when one (or more) of the symptoms of dementia gets worse, or a brand new shiny one drops into our world.

The best thing others can do for us is to empower us to look after ourselves, independently, for as long as is humanly possible, and to remain by our side as friends. Sadly, so many people disappear from your life after a diagnosis of dementia, a phenomenon experienced by so many around the world.

Staying with us, empowering us to help ourselves and not constantly wallow in pity is constructive and beneficial. Of course, there will be days we wallow in self-pity or sadness, as our worlds are disappearing. But I would dare to suggest, it is not a reason to die now.

Recently there have been changes in my symptoms, causing me to leave the cook top on all day, not noticing cars when crossing the road, falling over a lot due to visual and depth perception issues, and ultimately, having to get over that feeling of being broken and fragile, and take back some control. Using a walking stick to give my brain extra messages, and laminating a number of “Help sheets” to stick up around the house may well be embarrassing, but no longer not an option for me to maintain any independence.

The saying used when with my dear farming friends from Poochera, “Toughen up Princess” has been in play quite a lot lately! Mostly we probably just need some support with our broken wings, and some love and friendship to keep us going. Whatever we need to do for ourselves, to maintain our independence, needs to be done for as long as possible, regardless of how humbling it may feel.

 

8 thoughts on “Dementia and independence

  1. What a lovely post …… realistic but gentle and warm. I’m sending you some big BIG {hugs} ….. because I need them too!! I hope that you’re getting a lot of them on a daily basis from hubby 🙂

    And thank you very much for giving us an update on your own situation. We read about your life and you appear to be superwoman, with all your commitments. But you’ve shown us that you’re not. And shown us some of the new things you are facing. So a few more hugs your way ……. all of my symptoms have gotten worse since diagnosis but some have gotten worse in the past few months too 😦

    • Thanks i0landa… we are all supermen and superwomen I think! Everyone lives with trauma, illness, stress or other ‘stuff’… I often say, behind every smile is a bucket load of s**t’… and Big hugs to you too xoxox

  2. Hi Kate
    I’ve been following you for a few weeks now and really like much of what you have to say. This blog really touches a nerve. I would like to publish it in a newsletter I edit for Shropshire Disability Network in England, if that’s ok with you. You can check us out at http://shropshire-disability.net
    Best wishes and keep up the good work
    Peter

    • Hi Peter,
      Thanks for joining the comnversation here, and I am happy for you to re-post my blog, obviously with reference to where it came from.
      Love your site too, thanks for sharing the link. Let me know when you add mine, would love to see it there.
      Cheers, Kate

  3. Thank you Kate for your ever-inspiring courage to write down what’s really going on below (to quote Leonard Cohen). You are a beacon of light for all of us who are trying to make sense of a world laden with misunderstandings. The universe needs more of you!
    I wish well and send you lots of positive thoughts from Italy 🙂

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