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!
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.