A quick update while we have been fighting unjust and fraudulent actions of a third party with legal advice, NZ's Health and Disability Commission,
https://www.hdc.org.nz/ the Privacy Commission,
https://www.privacy.org.nz/ and advocate help. It is a nightmare to occur at the same time as income is tight with only enough "rent" to pay for flooded basement dwelling up to Christmas, enough money for food for another couple of weeks and notice to move but with no home options we can move to. All with the encroaching Christmas shutdown coming. Where from next week all the way near the end of Jan almost no services & business operate as normal, they often are on graveyard shift duties only or worse yet, full shutdown.
I feel an anger welling inside as this third party sought to manipulate and threaten hubby when they knew of his cognitive impairment and they were the ones in the position to manage his recovery. They perpetuated provably false information, doxed our private details online and added some provably false ones (that we have clear documents & NZ dept data to disprove it) and continue to lie even when clear proof is presented. Breaking the privacy act in NZ and their orgs code of conduct multiple times & in such a clear way breaking the core. They did this because they know both Daniel and I are too disabled to properly fight or even pick up on most of the breaches of code. It seems like these actions where any reasonable person would expect at least a reprimand, but in the industry they are in they may get a bonus for their efforts in abuse and disempowerment. They are rewarded for abuse of disabled people and thankfully our contact with the industry before was limited until now.
There is nothing my anger can do but wait, there is nothing I can do but maintain calm contact, get legal help, keep abreast of rights, reading past cases and legal reports, manage developments and look for a home. Somewhere, anywhere,... will we be able to afford somewhere? I have isolated hubby as much as I can so he can focus solely on his recovery, I try to keep him abreast of the main strokes but even a 5min chat can tank him and his memory is still quite bad, forgetting many things and appointments still. I can sacrifice my own energy, health and efforts but I too have been tanking more. It is severely depleting when I need to manage our finances, our lack of safe housing, our legal actions, my ME, the orthostatic issues, the emotional anger when someone you love has been manipulated and abused in such a way and a crippling depression that can occur when it becomes too much and I cannot yet see a way forward out of this. I don't know yet how to make it ahead.
I am a planner, I plan for likely eventualities in detail. In a way this innate desire to plan for things has saved my life so I let it continue now. In case of the hit by the bus effect, (tech term for having human redundancy when a critical staff member becomes ill), I plan to leave in a safe place for hubby my logons, bank details, investment details (inaccessible due to access restrictions by govt to wait for 65 years old), email and account logons, our files and documents sorted. Even getting him a copy of his files & notes he can access. I intend for him to have a copy of my medical stuff to reference, legal stuff like wills etc. Prepare. We are in a terrible storm, the security of our home was pulled long ago. We now have to fight our way through it as the storm threatens to pull us from the ground. I try to give hubby the best chance of us both as I know medically he has the best prognosis. He could recover soon, he could get medical help, he could improve where I cannot, (though not for lack of trying). I therefore place myself as the sacrificial metal, to take on anything that may impede his recovery or fatigue him so that
I corrode instead of him. I try to insulate him from tasks that are beyond his ability at the moment.
Christmas does not exist in our home this year and will not for some time. We have not been able to contact family much at all due to the increased effort and energy expended in legal actions. We have had more days where neither of us can make food on a given day. Just as well there is at least one place that can deliver food we can eat sans allergens at night. In NZ just having one or two restaurant deliveries is lucky, most areas would have none that can deliver and cater for allergies & dietary restrictions. Hubby could barely even see family last Christmas and needed 2-3 days to recover from even a simple dinner. Now perhaps the dinner would not be as bad. We have been practicing having a family dinner and had a couple successes. I anticipate he might be able to have the same as last year, maybe go to one dinner, maybe not given the recent demands on his energy and ability.
There is a hope that after Christmas if we can pull through I might find us a home, hubby might be able to get to a part time role to help, and the wait lists for specialists I have been waiting on for years might actually result in an actual appointment and treatment. I suck at waiting, being powerless, being trapped. I need to be able to do something effective, even just mental preparation, reading fellow cases. Steeling myself for what is to come. I also need to defuse the energy and anger.
If I don't laugh I would cry. If I don't see humour & hope I see only darkness.
Douglas Adams Hitchhikers Guide to the Galaxy described the perils of bureaucracy and apathy well in humour. Terry Pratchett described the every man facing unnatural malice in humour. The Monty Pythons and Red Dwarf... they had vignettes and songs a plenty.
Some things in life are bad
They can really make you mad
Other things just make you swear and curse
When you're chewing on life's gristle
Don't grumble, give a whistle
And this'll help things turn out for the best
And, always look on the bright side of life (whistle)
Always look on the light side of life (whistle)
If life seems jolly rotten
There's something you've forgotten
And that's to laugh and smile and dance and sing
When you're feeling in the dumps
Don't be silly chumps
Just purse your lips and whistle, that's the thing
And, always look on the bright side of life (whistle)
Come on!
Always look on the right side of life (whistle)
For life is quite absurd
And death's the final word
You must always face the curtain with a bow
Forget about your sin
Give the audience a grin
Enjoy it, it's your last chance anyhow
So, always look on the bright side of death (whistle)
A-just before you draw your terminal breath (whistle)
Life's a piece of shit
When you look at it
Life's a laugh and death's a joke, it's true
You'll see it's all a show
Keep 'em laughing as you go
Just remember that the last laugh is on you
...
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