The real tragedy of dementia

The last few months have been a very difficult time for me; physically, emotionally and also in terms of managing the disabilities of dementia, and due to this it has been very necessary for me to get support to proactively manage the stress. Since February, I have also consciously kept myself much busier than usual to avoid thinking about the pain of being so betrayed. The moment I stop, the nightmares come back, the anger bubbles caused by the brutal and heartless betrayal of very ex ‘close friends and family’ become too much to bear, and the overwhelming desire to give up my advocacy work often feels insurmountable.

Being much busier is not why I have written so few blogs; the fear of being attacked again is why I’ve stayed more silent.

Staying busy, whilst it makes me so tired and increases my pain levels to a point I can hardly walk some days, is currently a necessity.  Although I have had to give up my studies this year, and the stress and impact on my paddling means I currently am not capable of academic rigour at the level of a PhD.

As if a diagnosis of dementia is not enough…

Up front, I would like to thank those people who have supported us all through this time, some of you whom I have only ‘met’ online. Without you all, I may not have made it and I love you.

Anyway, back to my blog, and the fact I am healing enough to remind myself silence is not always the best way forward. This blog was inspired after watching a movie on the way home from after an event I presented at in Darwin a few months ago. As is becoming the norm, I am constantly drawn to stories of oppression, as they are based on true stories.

Thankfully, this particular story has also brought me back to writing, which these days, is also my much needed therapy. I am a white woman, who is a third or fourth generation Australian, and grew up in rural South Australia, but especially since being diagnosed with dementia, these stories of oppression now fully resonate. The movie, Hidden Figures, and these quotes from the film flashed brightly like shining beacons.

Although this blog has taken more time effort than ever before to make it legible, in part thanks to the the stress of being bullied and attacked, I am now ready to post it; these quotes stood out with such raw strength and reality, I was compelled to write again:

Freedom cannot be applied for.

Freedom is never granted to the oppressed

It is ALWAYS DEMANDED.

I’ve definitely been demanding freedom in the form of human rights and changing the world view of dementia, and there is no doubt I have found this out the hard way, since being diagnosed with dementia, and then winning a prestigious award in Australia. Since diagnosis, I have felt a deep resonance or sense of community amongst the many minority groups in Australia and around the world.

But a few of my ‘close friends and family’ have not been so civil to me, that is for sure! Ignoring us would have been so much kinder than actually defaming me and my family publicly, simply because I have dared not to die on more than one occasion. Rebel Wilson may have just won her court case, but it is not going to help me, that’s for sure!

“It is a brutal thing to be given a terminal diagnosis and then questioned if it could be true because you’re “doing so well” or you’re “not as bad as my loved one”.

Having dementia has 100% meant I am being even more oppressed than I ever was as a woman.

The people I feel most comfortable with now, apart from people living with dementia, and my husband and sons, and a few very special friends and family, are people from minority groups. My heart now deeply resonates with Aboriginal Australians, American Negros, friends with other disabilities, and lesbian, gay or friends with other different gender or sexual orientations, as they have been and many still are being discriminated against. Most have been oppressed since birth.

Previously I had only ever been oppressed as a female, or through the experience of domestic violence, and whether women or men want to admit it, oppression against women by men is still alive and if you don’t believe that, check out the survey in that article. But being diagnosed with dementia has taken any feelings of oppression I felt as a female to a whole new level of ugliness… and it has mostly been oppression from other women.

Sadly, perhaps ironically, it has only been since refusing to accept the Prescribed Disengagement® and ‘go home and die’ as I was told to do, and which most members of the community still expect, but worse than that, to then win a prestigious award for all the work I have done to improve outcomes for people with dementia and our families, have I felt the full force of oppression.

The symptoms and death sentence that is dementia are not the worst parts of dementia; it is those people who bully or accuse you of not having dementia who are the real monsters.

Daring to fight for my life to live as well and for as long as possible, not go home and quietly die (from a number of serious conditions), and also daring to speak up about what is wrong with the current system of care for people with dementia has meant I have paid a very high price personally, as have my husband and two sons.

Since the vicious public character attack made by a reporter, that totally omitted to include I proved I am not a medical fraud, and said almost nothing about why I am the SA 2017 Australian Of The Year, my emotional health remains very tenuous. This has also greatly impacted my physical health, including my ability to positively manage the symptoms of dementia as disabilities, and the pain of other chronic physical conditions.

Apart from writing as therapy, staying as busy as humanly possible, without physically killing myself has been the best way forward since February to cope with the severe stress. In January and February, I spent most of it I was in tears if I was not forced to be busy, and some days, laying on the floor or couch or bed, in the foetal position, unable to function at all, including unable to speak, sometimes except scream. My husband and I both thought, the stress of this cruel attack would mean I would never find the strength to start paddling again (functioning). There were many moments and days, when we thought the secure dementia unit was truly beckoning, and worse, dementia was going to progress quickly and relentlessly.

I’ve commenced sessions with a psychologist to ensure I don’t become clinically depressed, but being really busy helps, as it blocks out the intense pain and anger of betrayal. Unfortunately, I forgot to turn up to my first sessions… but has enow had two, and they have been incredibly helpful.

People are the hidden monsters of dementia, and cause the highest emotional and personal cost any of us pay. These monsters often claim to be friends, with smiles and ‘stories’ about us that sound true. But none of these people have sat in our doctors rooms with us and listened to the devastating news any diagnosis, or bothered to ask to see medical reports and results. If you live well with dementia publicly, or in your local community, people don’t believe you have it. These monsters of dementia accuse you of lying or of your doctors being wrong.

This is not only offensive and deeply hurtful; it is extremely insulting to the medical profession, who take the greatest of care before they give out a diagnosis of any type of terminal illness, and especially dementia as it is very difficult to diagnose. They are so careful, they often do not diagnose until later in the disease process, as it is a difficult diagnosis to give when there is not treatment, and more difficult to receive,. There really are no disease modifying drugs, or a cure, anywhere on the horizon.

At the ADI conference in Kyoto, DAI held a workshop, “Diagnosed with dementia: What next?”, and there were about 13 people on the stage, some with their partners who shared their stories. No one looked like they had dementia, including those people diagnosed with it.

We will all live until we die, and were all born with a death sentence, so a person fighting hard to live surely should be applauded, not bullied.

I’ve also noticed (again) a few friends on FB talking about also being bullied a lot, simply for speaking up about their dementia or dementia symptoms. Too often  it is someone with dementia bullying someone else with dementia. For goodness sake, surely we should be supporting each other. This cruelty must stop, and telling us to just ignore is not always possible for people with cognitive disabilities. 

Can my doctor or any other doctor prove 100% anyone they have diagnosed with dementia has got it for sure? My doctor was asked this, and said, “No, not until autopsy, and I imagine none of my patients are ready for that!”

Doctors do their best to give an accurate diagnosis, and almost all patients with any chronic or terminal illness including dementia are reviewed regularly. My neurologist was finally asked, “Could Kate have faked it?” to which he replied, “No, even I couldn’t fake brain scans and Neuro psych tests!!!!!”

In reality in my activism work I am claiming the collective freedom of people with dementia, even though there are still people who would prefer we were not even in the room, let alone at the table. The final quotes from the same movie say it all:

White woman said: “You know, I have nothing against you.”

Black woman responds: “I know you probably believe that…”

In my experience dementia is most definitely not the worst thing that can happen to a person; being excluded, bullied or defamed by ‘humans’ once you have it is.

Footnote: It is also likely this blog will bring out the bullies in my life again, but this time, silence and further and very necessary blocking will be how I respond.

32 thoughts on “The real tragedy of dementia

  1. Hello Kate!

    I know it’s been quite a while since I have written to you…… 18 months ago I had to stop looking after my mother at home and leave her in a nursing home. Reading your blog and your book helped me through the darkest of times for me. My mother “fell off the cliff” – her dementia just got worse overnight and so she had to be hospitalised for two weeks and she never came home again.

    Kate, even though people said stupid things to me, old friends never came to see mum in the nursing home, people were insensitive, so I know how cruel and unkind people can be…..I still CANNOT fathom how people could bully you, could betray you, could not believe you. Honestly, it is UNBELIEVABLE. What is wrong with people?

    I had people telling me not to go and see mum every day, telling me to go on a holiday, giving me TOTALLY UNHELPFUL advice. I found an amazing psychologist who became my guardian angel. Without her, I could not have survived the debilitating, devastating, sad, lonely , gut-wrenching and truly depressing days that besets anyone who has loved and cared for a loved-one with dementia.

    My beloved mother passed away on 16 June, 50 years to the day ( ! ) after the death of my dad. It was a privilege for me to care for her, be with her every day, get her ready for bed at night and sit by her till she fell asleep and I went home.
    Kate, the lesson I learned from all this is that you can count the number of TRUE friends on the fingers of one hand ( and not five fingers, maybe three….)

    The betrayal and abandonment and selfishness of people hurts and cuts deep. I know what you are feeling Kate, and I’m aghast that so called friends and family could be such monsters. What the hell is wrong with people these days??????????

    I had a private funeral for my mother and invited only the individuals who showed love and support to me and mum during her illness.I have burnt bridges, but that’s the way it goes…..

    Kate, thank you for everything; for your advocacy, your words, your kindness, your sharing with strangers… everything. Lean on me anytime!
    Carmel

    • Dear Carmel, I am so sorry to hear of your loss, and also of how unkind people were to you. It seems endemic and systemic for people with dementia and those who do support us. As you say, what is wrong with people???????? Thank you for being there for me, it means a lot, and without my wonderful online community here and with DAI, and my true close friends and family, I would not have got back up this last round of bullying, abuse and lies. Much love and kudos to you xxxx

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  4. Thank you Kate for writing this. It is painful, sad and makes me tremendously angry to read. I too have suffered from bullying from my family because I have dementia. I called the police on them, and then the police made it worse by handling it badly and believing them. I complained but it never really went anywhere…. I am involved in local issues with the DAA and use my voice to speak up for us. When I go home I sit alone and sometimes cry with the frustration of it. But, when I read your fight it keeps me going, and inspires me to try more. Thank you.

    Gill 🙂

    • Dear Gill, thank you for sharing your deep pain here with me, and please connect if you’d like to. I’m happy to email you if you want to chat more privately, or you can find me on Facebook too. Take care, and I will keep speaking up for us all, one breath, one moment, on day at a time, for as long as I still have words! We get strength and inspiration from each other, so thank you for inspiring me to keep going too xxx

  5. Kate, My Dad has dementia and I nurse people with dementia. Because of you Kate I look at this terrible disease in a whole new light. Because of you I can stand up for my patients and hopefully voice their rights in a hospital setting. Because of you thousands of people understand this disease and have more empathy. All because you, Kate Swaffer, are brave enough to stand up for this bullied minority group. You are amazing and I thank you from the bottom of my heart for your bravery and intelligence that allows me the glimpses into your world and allows me to understand a little better. Never forget what an amazing human being that you are – Thank you, thank you, thank you.

  6. Dear sweet Kate,
    You are not alone. Please trust there are many who admire, respect and care, both for you and your husband and family. Like me, they would give you a gentle life of equal friends and simplicity as well as they could. Your blog speaks of the shared experiences of others less able to articulate, with honesty, sensitivity and courage. Thanks to you, attentive health professionals, policy makers, and others who have concern to help people affected by, or living with dementia, have a richer knowledge and understanding of atypical presentations as they are experienced in the world lived by real people.

  7. I am so sorry for what you are going through. Truly. My 50+ year old geologist husband was diagnosed with Lewy Body Dementia and told to get his papers in order. Our friends disappeared first, his family next. I begged his mother for help even once in awhile and she said, no, she is not a caretaker. I had to stop working to care for him and so finances are scarce. I am exhausted but it is truly the disappearance of everyone you would help if they needed you that hurts the most. My husband doesn’t show it but he has got to feel pain like you do. Just know that there are people out here who care and are proud of you!! And blogging, too. It takes a lot. Keep looking up for our help will come through the Lord and the few angels He sends–seen or unseen, known or yet to be known. Sending hugs and love from Jane and Mike, Houston, TX

  8. Dear Kate I am so sorry to hear you are treated so appallingly. I have not met you but continue to admire you from afar. I & my friends who also care for their husbands with dementia all admire you & the work you do. Having had a chronic illness myself for many years I understand the disbelief, the looks, whispers etc. I wish you & your family only the best.
    I know it’s very hard but hope you can put these people out of your thoughts & look after you, your health & the people who deserve your love.
    Take care.

  9. I am SO sorry that you’ve had to go through all of this emotional abuse and torment. I only wish there was something I could do {big hug!} I hope that the psychologist can help you heal {more big hugs!}

  10. Kate my dear friend,

    I write this through tears, because the description of you pain is so damn real, and I feel your betrayal so intensely.
    The cruelty of others never fails to shock and horrify me, and when it is directed at those who are non deserving, well this is bullying at its most cowardly and disgraceful.

    It defies comprehension that human beings can be so hateful. It makes me wonder how anyone with a soul can be so callous towards another.
    This dreadful need to lash out and hurt others is their failing however, and that failing is not ever you my friend.

    I am sure they are miserable, envious, individual’s, who take their own misery out on anyone they feel they can overwhelm with their hideous natures.
    What is it they say? “Misery begets misery”…………………..they can try but they WILL NOT SUCCEED!!

    It must be so dreadfully difficult to rise above the heartless psychos that aim to squash your glorious sparkle, but know that those that know and care for you, who love and admire you, and who you inspire every day, are the only ones worth listening to.

    Don’t hide from the monsters – confront them in all your glory, and know that their pathetic aim to win within their perverse filthy little worlds, is only successful if they can stop someone achieving what they obviously cannot.
    These monsters want you to feel threatened, but with all monsters and cowards, if you ignore them, they eventually disappear into the murk from whence they came.
    They thrive on our hurt, so if we know in our hearts that we are so much better than they are, they may one day cease to hurt you so much.

    I hope so because your hurt is mine.
    I can see from all the comments above how appalled so many people are and hope that you hold this close and the nightmare ceases.

    Stand proud because you don’t need to stand alone.
    I am behind you every step of the way and if I ever have the chance, I would slaughter them on your behalf.
    Call on me.
    I would never let you down.

    As you know, to me, you are one of my heroes and you enhance my life by being in it.
    From the moment we first made contact you were such a shining force to me, not only because of your grand capacity to give of yourself for the good of others, but your awesome generosity of spirit.

    Blog on and keep writing because you remain our leader Kate.

    Love and courage my darling friend.xxx

  11. Darling, Kate.
    Sending you the biggest cyber hug possible! Your pain just burns through your words. There’s so little to say that seems meaningful. And so many of your friends have voiced so much support. I just add my small crumb.
    And I am reminded that I have not sent you a copy of my book! I am filling my days with lots of activity and getting rather addled in the process, I’m afraid. I’m pleased to read that you find writing a fulfilling way to help how you feel.
    I shall send this and then find your address again and pack off that book. Promise!

    With much love and many thanks for your brave work.
    Trisha

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  13. Gosh, Kate, I can hardly believe the ignorance that must surround you about your condition. What a cruel disgusting and very self centered world we live in. The more I study about dementia and the more I keep my mother well after ten years (she is 92), the more I feel education cannot come fast enough. if someone has MS and continues to walk and work do people ask if they really have it? When I was working with breast cancer that I didn’t know about it and neither did others, did that mean it did not exist?!!!! In my course at UTAS almost all the students know of you and your incredible work. If your family have turned that us the ultimate betrayal and I feel so sad for you. Take strength in the fact that many of us know the good work you are doing and the battles you must face every day.
    Wishing you continued health and a good life, always

    Adrienne

  14. Kate,

    I am so sorry for the pain others have brought to you and your family. I admire your strength and determination to help wherever and however possible, other people living with dementia.

    I have participated in the Wicking Dementia Research and Education Centre MOOCs where we received your incredibly valuable and selfless input. Currently I am studying the Bachelor of Dementia Care which I hope together with hundreds of peers, helps to bring about a global change in our discourse with and conduct toward people living with dementia.

    I empathise with you Kate and add my voice of encouragement to those who value you as the incredible humanitarian you are.

    Jane

  15. Wonderful blog Kate. I’m sure you’ll get through those traumatic memories as I will mine.
    However, it’s harder I think to not feel depleted and bruised. Perhaps if our bodies give us a bit of a break we can start ro heal ourselves, as we know how to do.
    All my love to you:I can’t get that image of you lying curled up and screaming out of my head…and that’s a good thing, doll.❤

  16. Sending you the biggest squishiest cyber hug I can, Kate. You have (are) certainly been through the wringer. Take care, my lovely friend – make you you stay strong and true to yourself xxxxx

  17. Dementia isn’t the only thing that brings out bullies, and I’m sorry for all those who have suffered at the hands of them including you Kate. None of us deserves to be bullied. It’s worth remembering that people who bully do so out of fear and insecurity, as well as their desperate need for power and control. Understanding that can sometimes help one to rise above it (or simply ignore it), though I understand doing so is incredibly hard particularly when one already has a plethora of other challenges to overcome. Still we will continue to #FightTheGoodFight

  18. Darling Kate.
    I’m so saddened by how these bullies have treated you and the ensuing emotional carnage it has left within you. It must be so hard to remain strong.
    Why cant people just be glad to still have you in their lives. I love you.
    Keep paddling xxxx

  19. Kate, I admire you speaking up for yourself, and speaking up for all people living with the disability of a dementia.

    Dementia is such a short word to be LOADED and so heavily with peoples’ preconceived ideas of the illness, which are often wrong.

    People fail to understand that different parts of the brain are affected for different people. Therein is the cause of great variation in the illness.

    At Daughterly Care we have lunch overlooking Narrabeen Lake with clients living with dementia each week and I really enjoy the conversations and laughter we have together. Even after owning a dementia specialist care business for 19 years, I am still surprised by, delighted with and celebrate the ABILITIES of people with dementia. You have been bullied by people who don’t understand dementia. They shine no light on you – they only shine the light on their ignorance.

    I am one of the minorities you mention. I decided young in life that one of the great ADVANTAGES of being a minority is that “my difference, small as it is, pushes away the wrong sort of people” and so I have been truly blessed to travel through life with genuinely kind, intelligent friends and work colleagues. May you be just as blessed going forward with unconditional love and understanding.

    The other saying I have is “f _ _ _ them”.

    It’s a way of letting go of people who are not worthy of your love and companionship. Kate, you are too smart and good on so many levels for the other people who have let you down through bullying.

    Just KNOW you are a shining light in the world.

    You help CONNECT, EDUCATE and ADVOCATE for people living with the disability of dementia.

    May you continue to shine brightly.

    You are a warrior woman and the world needs you for you make it better.

    Love Kate

  20. Oh Kate, I cried reading this – with tears of sadness mixed with those of blind fury. I have admired you since first ‘meeting’ you during the Wicking Institute MOOC on dementia, anyone who watched that will remember your quiet dignity as you discussed your diagnosis. How DARE people attack you like this? How DARE they?
    I have the deepest respect for you Kate, for all you have done and achieved (with your BUB of course!) and I pray we can be selfish and keep you much longer. Thank you for being you and helping us to understand. Please, please don’t let these sub-human creatures undermine you – yet again I’m forced to contemplate how revolting some elements of the human race can be – rather, hold your head up high, smile sweetly……and sod them!

  21. Kate, you are a brilliant woman and definitely deserve nothing less than admiration and appreciation. You have inspired me greatly. As you probably know people disbelieve or challenge the reality of dementia in others because of overwhelming fear of developing dementia themselves. People fear dementia more than cancer today. This is a well documented fact. If you (a person living life as well as you can) or I can have dementia than anyone can have dementia so people strike out at those of us who struggle and continue to trail blaze a path of positive actions to educate and encourage others with dementia. Keep up your advocacy and writing efforts. There are cyber bullies, but the majority of us are struggling along this path and continue to need inspiration and appreciate your determination to help those living with dementia.

  22. Well-written Kate. Thoughts are with you. It’s a touch road you travel, and many are walking right beside you.

  23. OH my dear Kate. I cannot fathom people wanting to or feeling the need to bully you or attack you. You are one of the kindest, most intelligent, thoughtful people I know and you have awakened such a new understanding for so, so many others of what it must feel like to have Dementia, which as a caregiver I can only begin to imagine! I am grateful to know you. The work you do and have done on behalf of people with Dementia all over the world, has added to the quality and meaning of life for so many. Never give up because of the stupidity, jealousy, or fear of others.You are loved, and admired, and respected. Don’t let them diminish you, EVER!!!

  24. You continue to open my eyes a little wider and shift my perspective. Since following your blog my work with dementia has grown, and I have continually looked to those with dementia to be my continuing education. I can learn far more from you than from my textbooks and many of my fellow professional non-medical caregivers, though they are not to be disregarded, they don’t give the full picture, the full voice. Your blog, as well as that of others with dementia, have enriched my life and my work. Thank you!

  25. Thank you Kate for sharing this with us. I’m sorry some people behave in such damaging and destructive ways and that you are having to deal with that fallout. I am perpetually surprised at the human capacity for both meanness and kindness. Oh that kindness and understanding would prevail.

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