Diagnosed with dementia… Oh, and still a human being

imagesThere are many surprises after a diagnosis of dementia, and I was chatting about some of them Monday night with friends from the UK. One of the most common is the ‘friends’ who disappear after they find our we have dementia.
A few weeks ago I was interviewed on the telephone by one of the producers of the SBS television program Insight in preparation for the filming of it last week, and the final question I was asked is this: What has surprised me the most since being diagnosed with dementia?
Sadly, it did not take me long to answer this question, and I answered saying:

The one thing that has surprised me the most is man’s inhumanity to man …

Why have we been systematically locked away and/or ignored as if we are not human beings once we are diagnosed with dementia?
I have often said I have often felt like I am being treated as “no longer human”… and this still surprises me. When vile journalists such as the despicable pathetic excuse of a human being K Hopkins from the UK, makes statements such as this; “What is the point of life when you know longer know you are living?”, and others like that, or alternatively, claim we cannot possibly have dementia if we can still function at all, it simply exacerbates the very great challenges of improving perceptions, and more importantly, the care of people with dementia.
The SBS program was filmed in their studio last Thursday night, and their goal for this program is to show a more balanced view of dementia, that is, that there are many of us living better with it than most people expect, and it is possible to live meaningful and productive lives at least until the end stages  of dementia.
Many of us are simply refusing to be treated like non humans, and more importantly, absolutely refusing to give up living.
And surprisingly, playing Bingo is not on our suite of meaningfully engaging or purposeful activities!!!
Some of us have become poets, some artists. Some writers and authors. A few of us are even studying at university or doing other courses, and NO, these courses have NOT been DUMBED DOWN for us. Some are advocating and speaking out, at events and forums where people without dementia are actually, almost unbelievably, starting to listen. One day, we might even see dementia care change for the better as well.
We are refusing to be patronised, excluded, or used in tokenistic ways that simply allow organisations to tick a box in their paper work to state they have included us.

One person with dementia on any committee or program, or organisation, is quite simply, not enough.

But, zero is intolerable.

Personally, I have been discriminated against by organisations after being nominated for their Board, and openly denied a place ONLY because of my disabilities. This is blatant discrimination.
Mr Graeme Samuel, the current President of Alzheimer’s Australia stated very clearly at the SBS filming of Insight, of which he and his brother were two of the people being interviewed as family carers of their mother, that it was impossible to tell by looking at or listening to those of us out the front with dementia sitting with our family carers, who actually had the diagnosis of dementia.
Graeme also stated people with dementia still have a lot to contribute to society, and should be not only allowed to, but encouraged to do so. Hopefully others will take this seriously.
Another point made by Graeme and his brother, which also resonated loudly with my husband and I, is the guilt we feel for having placed a parent into residential aged and dementia care. We all know, logically and realistically, there seemed no other option, but that will never remove the feelings of guilt for having let them down. Rational logic does not always remove our feelings of guilt. I learnt that after the death of someone I loved by suicide!
There are, quite literally, hundreds of inequities people with dementia are facing, each and every day, and until my last legible word or breath, I will keep speaking out for them, and up for our most basic of human rights… to be treated as a human being, and with full and equal inclusion in every single conversation abut us.

44 thoughts on “Diagnosed with dementia… Oh, and still a human being

  1. Just reading the comments about ” lack of friends” after diagnosis– that’s why joining a” carer’s group” is often very beneficial to both carer and loved one, you are amongst people who really understand.!

  2. Kate,

    Another brilliant and perceptive blog post. I agree with you that this is pretty difficult to accept.

    I have concluded that many friends (or personal or professional acquaintances) disappear probably because they cannot bear — for your/my sake or their own — to see talents you have had disappear or mutate. This can be quite personally threatening to someone who is an age peer and thinking about how they might change in the future as they age. There is a huge perceptual bias in many cultures to believe that “disease” always causes loss and never gain when in fact many who also have dementia-causing diseases like mine (or any of thousands of other diseases) can see gains in their talents or conclusions or thoughts or appreciation of others during the time they live well with dementia (or other diseases).

    My experience has been that while “weak” friends do sometimes bail out, “strong” friends stay. And that new friends made while having the disease become very strong friends because they have chosen to be a friend during a time when what they see is you are your now.

    I continue to believe for myself and others with dementia that we with dementia also have a responsibility to not complain about those who cannot understand that a diagnosis does mean that life stops being fulfilling and joyful and productive immediately (or ever). Rather we need to focus on those who understand and stand by us and those who become new friends and point out the huge role they play in our continuing quest to live life to its fullest.

    The comments I recently about the same issue on my blog are here: http://hubaisms.com/2015/04/08/fighting-dementia-with-the-proper-focus-mindmaps-and-visual-thinking/

    As you know, I greatly appreciate and admire your willingness to share your thoughts on these important issues.

    George

    • Thanks for your insights George, and I agree with most of your sentiments. It is the strong friends who stick around, most definitely. And I’m sure it is not malintent the others disappear, it just is. Some can hack it, some can’t, as with everything, life is like that… dementia seems to incite a huge disappearance, as does, mental illness so I guess many put dementia, which is a physical illness, in the same boat. I often used to way I’d prefer to be disabled physically and in a wheelchair, far more sympathy for the short time I was in one!!

      • Hi Kate, just wanted to touch on your point about dementia = mental illness !! In WA, my late father with LBD was placed in an Older Adults Mental Health unit 😡 I won’t describe the inhumane experiences he went through (and our family). Now that my grief is subsiding a little, on Monday I wrote a letter to the WA Office of the Chief Psychiatrist expressing my concerns & requesting an explanation/reasoning for dementia to be considered a mental illness. I predict his only reply will be funding & to lobby policymakers. We have two dementia specific LTC facilities for the entire state!!! I am looking forward to hearing the positives from the ADI conference 🙂 xx

  3. Pingback: Diagnosed with dementia… By Kate Swaffer | Melanie's Blog

  4. You really are making a difference. I admire and respect what you do. I am a community care worker and I know from first hand experience that the clients I work with have a great deal to contribute.

  5. Once again, brilliant Kate….Your blog has been invaluable to my wife and myself…you have encouraged us so much. We now have a new found outlook on life…Keep up the great work

      • PS sadly some of our so called ‘close’ friends have not been in contact since we told them over 6 months ago which has been very hard for my wife. In fact in my support group someone said, “Jack don’t be surprised where your support comes from and where it DOESN’T come from”

  6. So very true, there are many people out in this world who think that they know better, but in reality they have no idea about what it’s like living with this illness,

  7. Kate One of the first things I noticed after Mum’s diagnosis ( particularly as Mum declined during the last 3 years of her life) that “friends” dropped away, really abandoned her. This devastated Mum and also me as her daughter looking on. I rang Mum’s closest friend one day ( who visited less and less often as time went on) and through tears said to her “please don’t ever forget your best friend, she is STILL HERE ” .

    I would also like to mention that guilt is not only felt by those who place their loved ones in residential care, it is also felt by those who care for family at home as I did with Mum. I still feel guilt over whether I did all that I could everyday, whether I did everything the best way or the right way for Mum’s needs. I do know I did my very best with all the strength I could muster over a very challenging journey Mum was on. There were times where I thought I couldn’t do it anymore but I always kept my promise I’d made to her on the day of her diagnosis that I would ” be right by her side for the whole journey” .

    • The isolation brought by the loss of friends affects the person diagnosed, and also their families, for example the family friends we lost, meant our children lost a lot of friends their own age, and adult support as well. The guilt is a huge issue, and I have written quite a lot about it in my book, especially the guilt the person with dementia also feels. onwards and upwards, helping each other understand each other! x

  8. Once again BRILLIANT KATE speaks the truth !! There is a lot to comment but the first thing that came to mind is…..maybe the people behaving and speaking inappropriately ARE the people who DON’T know how to live a full, meaningful and productive life!!! Interestingly, a discussion I joined last night was about “unconscious bias”. We just need to speak the truth to as many as possible and the paradigm shift will happen. The ADI conference and similar meetings are a great way of disseminating correct knowledge and then it needs to be reproduced to the general population. Please say hello to Leah 🙂 xx

    • I think “unconscious bias” plays a huge role. People through lack of education and awareness are terrified of saying the wrong thing, of being inappropriate and hurting their friend, they feel uncomfortable. I also think people don’t like to be confronted with issues which may have them examining their own mortality. Loosing friends is not unique to the person with dementia. People with other chronic illnesses,sudden disabilities, even those “coming out of the closet” say that loosing friends was something they were acutely aware of.

      • Sadly, I think it is more common than we realise, however, I have had other very serious illness and been through suicide loss as well, and have never had the numbers of people disappear from my life as with dementia…

  9. Hi Kate
    So true many who you thought of as friends disappear but then you realise you don’t need them but the ones still there are your true friends. My granddaughter came to our young dementia group having raised money for us. Her grandad showed her to the toilet and on the way back she said to him ” grandad which of them have dementia” he said “You tell me ” her answer was I don’t know because they are all so happy and all seem the same. Perhaps the powers that be should see us through a child’s eyes. They see us as the person not the dementia. While I can I will talk to anybody who will listen that we can and do live well with dementia just treat us as well as everybody else.

  10. Kate this is a very moving post for me. I agree 100% with your sentiments. I would love to see a grand move in society of not being so fearful of dementia and realising the value we are losing. A public campaign not based round fear but rather understanding would be brilliant.

  11. It’s a pity that so many people who are not living with dementia see it as their right to comment on what it’s like to live with dementia. They should comment on the cognative condition they do have – stupidity.

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