Living with a chronic illness #DAM2015 Day 25

Image source: googleimages.com

Image source: googleimages.com

It is Day 25 of Dementia Awareness Month 2015, and I am feeling exhausted from so much blogging here and for Dementia Alliance International! Go figure…

Anyway, I thought I’d write a short blog, based on something I read recently written by a young researcher in Queensland who I follow, Siobhan O’Dwyer. I’d suggest the caption in the image I added here today, says it all too. Everyone gets bored, even our doctors, when there is nothing they can do to ‘fix’ things.

Siobhan’s blog on living with a chronic illness made a number of interesting points, and this one in particular got me thinking;

(3) Doctors will only be interested in your body; you will have to take responsibility for your mind. There is a profound psychological shift that comes with chronic illness – a shift in who you thought you were and how you thought your life would go – and that shift is accompanied by the awful (but incredibly valuable) realisation that your life and your body are largely out of your control. But your doctor (no matter how awesome he or she is) won’t tell you this and isn’t particularly interested in how you cope with it…”

So if medical doctors are only interested in our physical health, and our body, no wonder they cannot find a way to manage a disease like dementia, that whilst it is physical, it presents with symptoms ‘from our mind’. On top of that, there is NOTHING they can do to ‘fix us’, no cure, nor any disease modifying drugs.

Based on Siobhan’s thoughts, and the caption in the image, it seems, people with dementia are doomed…

 

 

11 thoughts on “Living with a chronic illness #DAM2015 Day 25

  1. Pingback: On treating the mind… #DAM2015 Day 26 | Creating life with words: Inspiration, love and truth

  2. Thank you for your post Kate. I think there is truth to what you are saying and I would imagine it would be very easy to feel doomed in this situation. This can be related to multiple types of grief and loss when being dealt the dementia card. As a psychologist, I believe there are many options for people with dementia to seek assistance with the ‘mind’ side of things, despite not being able to seek this assistance from their GP. I am very interested in this field and am considering starting a PhD in grief and loss for people with dementia and their families. I am currently conceptualizing the focus of my project and recent blog posts have reminded me of the importance of promoting the options associated with psychological support and providing a voice for people with dementia. In your opinion, where in the dementia journey do you think we need more psychological support available? Do you think this should target the person with dementia, their partner, family, ‘care-giver’, children, or aged care workers? What needs to be done to allow for greater mental health support for people with dementia, when considering grief and loss? I would highly value your insight on this.

    • Grief and loss, of the person diagnosed, is in fact, the longest chapter in my soon to be released book! It is almost ignored currently, and rarely spoken about or managed at all. My bog later today talks a little about this as well…
      Please do your PhD on that, I’d be happy to be a ‘research subject’ for you too!
      Is it ok if I email you?

      • Hi Kate,
        Thanks for your prompt response. I have come to a similar conclusion. For example, a google scholar search of ‘anticipatory grief’ and ‘person with dementia’ has very few results that actually relate to the person diagnosed with dementia, despite a lot of fact sheets (and people with dementia) reporting that this is common. I would be very happy for you to email me. Let me know if you need my address.
        Donnamay

  3. So maybe the doctors are on the wrong track ..what if?! they were more skilled with dealing with the mind?
    . In my opinion the body is ruled by the mind, healthy mind healthy body as the saying goes!
    Yours sincerely L.F
    Paid carer for more than 10 years now…frustrated and still trying to find ways to help 🙂

  4. Jack and I have not even been to a neurologist in two years. We know what he has, know that the meds don’t work for him (heart issues), and we are just living our lives, seeing an integrative doc who will try other supplements, and Jack continues with his memory enhancement classes. We have very low expectations of the docs for much after the initial diagnosis. It would be nice if the docs could offer more, including support, but we are finding other resources that provide us with that or we create them. At least we got a diagnosis initially, which appears to be more than lots of people, from what I read in some posts and articles. I hope dementia gets the spotlight it deserves so this situation can be improved.

    Trudy

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