Guest blog: A message to the dementia doubters

A message to the dementia doubters, by my B.U.B. Peter Watt

doubters

Have you ever wanted to tell a dwarf to grow up?

Someone in a wheelchair to stand on his or her own two feet?

Or perhaps someone without arms to lend you a hand?

Of course not!

 

Well this happens to my wife and anybody else who is living well with dementia every day.

How would you feel if you were a redhead that had just done really well in your exams only to have someone tell you that the university, college or school had dumbed the test down for you because we all know that redheads are notoriously stupid.

Or would you feel it’s unfair that they should let wheelchair athletes use wheelchairs.

It seems that when things are blindingly obvious we are astute and intelligent, but when things require the slightest amount of thought we revert to type.

If you were living well with dementia would you be enthusiastic and uplifted if I told you didn’t know what you were talking about, couldn’t possibly have dementia because you were doing well regardless of your enormous effort that it takes you to function.

That you had cheated, or people had given you that degree or certificate because we all know you have dementia and are not capable of anything … is highly offensive.

Unfortunately I know and expect these comments from ignorant and uneducated people. But from doctors, researchers and heath care professionals I expect so much more.

In doubting the effort that it takes to live well with dementia you make yourself more stupid than the distasteful and insulting comments you make to those with dementia who are working their arses off to live better with dementia.

Hopefully we never meet.

BUB.

Note: this blog was written recently by my darling husband, who is very loyal, and obviously gets upset with the attitude of some. Richard Taylor read it, and apparently was amused enough to have raised himself up out of his chair with laughter!

18 thoughts on “Guest blog: A message to the dementia doubters

  1. Pingback: The challenges of being an advocate | Creating life with words: Inspiration, love and truth

  2. Thanks for sharing this Kate. It reminded me of a time when one of my Mum’s oldest friends kept telling her that she must remember so and so or a time when they’d done something memorable together. It was meant out of love but came from ignorance and I could tell it distressed Mum. Equally distressing was Mum’s GP dismissing her our concerns as just evidence of getting older. On that occasion, ignorance was no defence. Thanks for continuing to inspire. Duncan

  3. Well said BUB!!!! I despair!!! If the only criteria for acknowledging an ailment is whether or not it can be physically seen or measured, then we’re in dire straits!!!!! I don’t see the same approach towards those who have a mental illness and in fact if the mentally ill were treated with the same disdain as those who are living well with dementia it would not be tolerated at all! There are already large numbers of people who are in the early stages of dementia who don’t have a diagnosis and are living well until they are given a diagnosis and then all of a sudden the rules and attitudes change completely!! One day you are well, the next you’re incapable of living a meaningful life!! Go figure!!!

  4. Mick, why do you stick with her? Find another GP with an open mind who’s prepared to at least learn from you, maybe even do some reading about what your diagnosis means!

    Our GP is a listener. He always addresses Veda first, and looks at each of us (he’s also trained in psychiatry BTW!) Then he asks what he can do for Veda and/or me. Never hurried yet always efficient, careful, accessible.

    You deserve respect too, mate.

  5. Thanks Pete! Give it to’em every time!!

    Kate, the more I think about this the more I think it has to do with professionals, GPs especially, assuming or having been taught that PWD are unable to make their own health decisions because they are “not legally competent” ie not full citizens, much like the uninformed view of people with mental health issues.

    “They have no insight into their condition”, ” they need to be protected”, “how can anyone trust what they say?”, “they don’t know what’s good for them”, “they don’t understand what’s happening to them”…..etc.

    Invisible disAbilities.

  6. Kate I think I adore your husband even more after reading his comments.
    Intelligent, intuitive, integrity and all the aspects of a personality that I too expect the medical field, in this day and age, to represent.
    It is a constant disappointment to me and appalls my sensibilities that many, in a field where education is supposed to be of paramount importance, continue to display that they are ignorant, rigid and judgmental. Many, (not all) representatives of this supposedly esteemed profession, continue to be blinkered, subjective and yes, offensive in their outlook to those they supposedly care for. It never ceases to amaze me how some professionals actually feel it is satisfactory to perceive those living with dementia from their own purely cognitive viewpoints. How lacking in compassion and empathy they must be. How little do they value the person when they only view them based on their dementia.
    Give your hubby a big fat hug from someone who thinks he is wonderful.
    As for you Kate, you know how much you inspire me so enough said.
    Cheers and smiles.xxxxx

  7. Hi Kate and Pete
    I know the feeling, my GP, at times disagrees with the geriatrician’s diagnosis. A pet scan and an MRI proved positive. She has had one other person with dementia who has passed away. Because I do not have the same symptoms, I do not have Dementia in her words. I have to constantly remind her that there is over 100 variations of dementia and no two people have the same symptoms. I to am constantly having to defend myself because I am only 59. Frustration at the highest level.

    • Yes, it continues to be offensive… not just to us, but surely to their colleagues?! One wonders how those that dot, would feel if other doctors started telling them they were wrong all the time…

    • Nope, you are NOT alone Tony… it is pretty much the same for everyone who DARES to do well with dementia… we have such a long way to go!

      I recall a time when even the scientists and doctors believed someone with a severe spinal injury would NEVER WALK again, and that has been proved yo be wrong too…

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