Wednesday, June 23, 2021

there is no escape

 

image of a labyrinth with the exits closed off, one by dementia, one by narcissism

In a previous post, "Invisible Friends, Imaginary Enemies" I wrote about what it is like to care for a relative (in this case, my father) who has both narcissism and dementia, a situation in which not only is the carer never truly seen by the outside world, but the person they are caring for can't see them as a friend only as an enemy. It is devastating and being any kind of carer for anyone is already incredibly fatiguing, challenging beyond belief, and difficult to get any kind of respite, and news flash: most carers are dying for some kind of relief... but lately I have felt, more than ever, that there is no escape.

I feel like I'm in a labyrinth with the exits sealed off, one by dementia, and one by narcissism and I'm never getting out of here. 

Every single person feeds the narcissist and not one person ever feeds the carer. Not only are we starving, but when people pander to a narcissist they ultimately make the narcissist's personality and the conditions surrounding them so much worse, for everyone. Because it has to be said:

You cannot feed a narcissist, because you cannot fill a narcissist. They are a bottomless pit. A sink hole of humanity. A parasite. Engorged by glory, they expect more glory. More of everything they want. Without consideration for anyone else. Without appreciation for anyone else. Without reciprocation. Without pause.

Even aged care, dementia, and medical professionals pander to this man. No one has formally explained to my father that he has dementia. Let's think about that one for a moment.... most people with dementia, are given their diagnosis, yes it is distressing, (and sometimes they might even forget it temporarily) but over all, what happens is - they are given time to prepare. They lean on their family, they allow a spouse or family member to cover for them when they forget what day it is, or an important birthday, or can't remember where the car is parked. They trust their family to help them when they are confused or frightened - yes eventually the cruelty of this disease (or condition) is that they will eventually find little comfort even in their family, their panic and confusion escalates, but at least in the beginning, they were aware that something was happening, and that they could harness their family and friends to face this responsibly.

Even when my father is assessed for dementia, and the progression of his dementia, he is told "you did so well!" he emerges dripping with praise - now its well meaning, I grant you, it is said to make the person feel better after being probed, quizzed, and asked to jump through mental hoops, I get that - but all he remembers is that he did well.... he uses it as proof there is nothing wrong with him. 

NO ONE HAS TOLD HIM and we, his family are copping the brunt of it all. I am the only person who attempts to explain to him, and my mother rushes in, tells me to be quiet and then gives Dad whatever the hell he wants. And he's not so far gone that he hasn't learned that temper tantrums get rewarded because he at least has the savvy of a two year old.

He does not understand why he cannot have the house keys anymore. He doesn't understand why he is not legally allowed to drive. He doesn't know he doesn't still own a house he sold over 30 years ago and accuses my mother of selling it out from under him and taking all the money. He doesn't remember his sons, even in photographs from the past, because his particular brand of dementia is not making him an expert on every tiny detail of the past, it is destroying his brain and his entire mental capacity across time - his memories of the past are not even correct. He tells me he likes my sister better than me and I don't even have a fucking sister (its not however news to me that he doesn't like me)

And yippee, in the middle of this we get approved for an entire day of dementia day care for Dad once a week. Please make sure you read yippee in my most drippingly sarcastic voice because this is what we needed for Dad two years ago, and now my greatest fear is that this one day of "relief" a week will simply allow my mother to keep us all living in this untenable situation for even longer. Because the one day a week does nothing to improve our daily home life - it does not give us superhuman strength to fully supervise my father like a toddler holding a button battery needs to be supervised. It does not keep any of us safe, de-stressed, or lessen in any way the relentless screaming and fighting in this household. It does, however, increase it. So thanks for that people. That's fucking awesome.


yes I will look a gift horse in the mouth, have you seen how dirty the teeth are?

In order to get our day of "relief" we have to fight with Dad every day for a week because he does not remember the days of the week anymore and cannot believe us that it is not Thursday yet. In fact Dad has some theories about the calendar being changed and that weekends never come anymore, and that he liked the way the calendar used to be. And because he is a narcissist, the thing is, if he doesn't know what day of the week it is, we sure as shit don't know either. Because we are lesser. 

Then on Thursday mornings we have to search dad for "show off materials" because the only way he knows how to socialise is to show off all his accomplishments (as an artist and before that as a competitive cyclist) with photo albums, books, scrapbooks, certificates and all kinds of vintage papers that we have been asked not to allow him to bring because this is just a day where people socialise as naturally as possible. Which is completely unnatural to a narcissist. And we have nuclear tantrums over this every week. 

At the end of a very long day, really too long for my father, we bring home an over tired, cranky old man and have trouble getting through the necessary end of day activities made even harder by the fact that any time my father leaves this house, upon return we can have 2-3 hours of screaming about things he has lost and that are in the car. That are not in the car. Because they are on the table right in front of all of our very eyes. Usually it is his eye glasses. He has one pair of sunglasses, two current prescription sets of glasses, and one old prescription set of glasses. And you can lay all the glasses cases out in front of him, with a pair of glasses in each and he swears black and blue they are not there they are in the car and we have to let him search the car for things that cannot possibly be there... because they are here but he cannot believe us and he cannot let go of the idea that he has to search the car. Even if we let him futilely search the car multiple times. And then it arcs up again right before bed when we all should be relaxing and getting ready for some sleep.

And that brings me to my next point... I don't even have the escape of sleep anymore. It takes hours to get to sleep. It takes Dad about 2 hours from when he says goodnight to when he stops yelling and fighting and faffing about. I need a couple of hours to unwind. Then if I do achieve sleep, Dad comes into my room in the middle of the night saying things like "there is someone at the front door" followed by "I guess she is staying out all night" (meaning my sister, who doesn't exist... but might possibly be a memory of me... because I have a theory that he thinks bout the relationship he used to have with me before he was my childhood abuser and our relationship was altered forever) but he worries incessantly about someone not being here who should be here, and opens all the doors and turns on all the lights and I just need some fucking sleep.

I also used to escape by taking my dog for a walk, but even that escape has been taken from me.... and this is how narcissism is a tricky devil. My Dad, who still goes for walks in the neighbourhood on his own (I personally don't approve of this at all, but Mum lets him) anyway.... he tells everyone he meets about me and my dog, Captain, so now all the people in the neighbourhood who used to be my friends, and part of my escape.... first thing they ever do now is ask me "how's your Dad?" I JUST WANT TO GET AWAY FROM HIM AND ALL THOUGHTS OF HIM is that too much to ask? But all the people have to tell me in great detail how concerned they are about him when they see him walking, because he struggles so hard with his mobility, he is so slow, he is oblivious, he can't hear traffic or people calling out to him, he walks in the rain, he walks in the cold, he walks in the heat wave of summer, he walks on the road if there is no foot path and sometimes, worst of all, he walks without his walker and then tells concerned people that his wife has the walker (a. she doesn't need a walker b. he has two walkers) and then he wonders how I could possibly know any of this about him... because he doesn't realise telling every single person in the entire neighbourhood identifiable things about myself and my dog is the reason everyone knows exactly who to come to with their worries about him. And when is the last time he ever thanked me for being concerned bout him? Twelfth of Never. That's when. 

And I forgot to mention that the day of "respite" actually cost us another essential service we use - transport. Because Dad got assessed at a higher level, my parents now have lost their transport service because that provider can only cater to entry level care and so even though mum is entry level, dad is now higher and they can't have access to subsidised transport with their original provider AND NO REPLACEMENT has been offered. And we can't cancel the daycare because its under contract and although my parents do not pay a cent for the daycare, they would have to pay to cancel the contract. And the only way we are getting out of this is to put Dad in a home, which is what I want, and what we all need, and is probably never going to happen. 

And that is how you get a pressure cooker of a care situation. And since I'm venting, please, don't expect me to magically resolve this for everyone right here and now. I feel like am trapped and have no escape and I am not ending this post on a positive note. I just am not. I'm too lost and broken to do anything but lay it out for you. Caring for someone with dementia is hard. Caring for someone with dementia and narcissism is full nuclear and should not be attempted in your own home. And people in the dementia and aged care fields need special training to identify dementia patients who have narcissism so that they can respond appropriately to the patient and their family. That's it. That's the post.

If I'm still here next week instead of rotting in an insane asylum I will try and write a new post. With humour. 

Wednesday, June 16, 2021

the lunatic waving a bag of poo

 I think I need to talk about the day that I had yesterday. It was a day of frustrations, disappointments, extreme stress, a fleeting moment of extraordinary good cheer, and then earth shattering awkwardness. Are you ready?... let's delve.

I woke up much earlier than I was ready for, in the dark, and the chilly winter morn, to walk my dog. When I got home I had to bring in the day's firewood, which I dropped on my bare foot. Don't worry it only tickled. Of course it didn't, it hurt like blazes. For goodness sake!

It was Wednesday so that meant it was grocery day, and it was very people-y out there and I Eleven-Out-of-Ten do not recommend. After completing my shop with the speed and efficiency of a well oiled machine, I sat in the car for over an hour waiting for my mother to finish her shop. Then we staggered home to COVID clean our groceries and fall on some muffins to save our lives. The muffins were okay-ish.

Now get ready, if you are one of my overseas readers, I am about to shatter some of the illusions you have about living in Australia. 

What people imagine my life in Australia is like:

I live on a massive property, the kind it takes a day to drive across, and there are kangaroos hopping around everywhere, and I have Koala Butlers, and we eat wattle seed ice cream melting over lamingtons and shout out Coo-eee! to help lost people find their way to safety. Then we all go swimming at Bondi Beach and play cricket and call in sick from work the next day even though we're just hung over. And when we prank call people we say "G-day mate!"

What my life in Australia is actually like:

Sometimes a kangaroo swims across the river and gets lost in my suburb and panic hops at high speeds into culdesacs and frightens the living shit out of my dog who tears my arm out of the socket as we run away. A patron of the drug dealer across the road drove their car into my house, I was inhospitable (I didn't crack open a cold one and wait for the police, I screamed "I am going to fucking kill you!") I hate cricket. And football. And my house is so close to my neighbour's patio that when I'm in my toilet yelling at my family to bring me some toilet paper, I can hear him laughing.

Which is to say, yesterday I had to repeatedly yell out for someone to please, for the love of God, bring me some fucking toilet paper. I really fantasised hard about having a butler koala at that time.

my fantasy Koala Butler



But to shatter another of your Aussie illusions... koalas are fucking lazy bastards. They sleep nearly all the time because they have barely adequate nutrition from eating only eucalyptus leaves and when they are awake they are mostly disagreeable, grumpy bastards. But we deserve it because we are destroying their habitat. Sorry about that. You have to know actual Australian people care very deeply about this, we just have really shitty government.

But still, I couldn't let go of the idea of a Butler Koala. 

Until my Dad wore his $8000 hearing aids in the shower. That was the cause of the extreme stress mentioned in the intro of this post. I can't even talk about this - which is really telling because I never shut up about anything. This was really unbelievably bad.

Then I took my dog for his afternoon walk, and was absolutely cheered to see my niece's husband driving the van used to drop off elderly clients after a social day, he was waving, and I had one hand bound in several loops of dog lead, and the other hand was carrying something. Okay it was dog poo. I waved a bag of dog poo with a massive smile on my face.

After dinner I messaged my niece's husband and said "you're not really my friend until I've waved a bag of dog poo at you" 

A couple of hours later I was messaged by my niece (not his wife, my other niece, who works with him) and she said "I waved at you today, but I don't think you knew who it was, based on the way you were waving"

WHAT THE FUCK!!! 

The van has tinted windows, and I had dark sunglasses on, and I have shitty vision, and I thought I was waving at Stuart and I was actually waving at Amber, and to make things worse, although they work together, Stuart was not even in the van.

So... the first private message I sent Stuart in two years, (the last one was welcoming him into the family the night before his wedding) and that came in after... well... my niece and he might be (but probably are) separating was to say "you're not really my friend until I've waved a bag of dog poo at you" AND I HADN'T WAVED A BAG OF DOG POO AT HIM sounds like goodbye, you weren't even thought highly enough to have me wave a bag of excrement at you. Which is not the truth Stuart. I promise.

The one thing that cheered me up about this whole craptastrophe (crap catastrophe) is thinking Amber would have seen me when she was driving the van and said, "Hey, there's my Aun- [sees me waving a bag of poo] never mind, I don't know that person"

Amber tells me she totally would have still claimed me as her own, even waving a bag of dog poo at a van of senior citizens, and I believe her.

Because we are truly kindreds.

And Stuart is a mighty calm man, because when I did send him that, unfortunate message, his reply was not "what the heck are you talking about?" it was "I didn't notice" like he totally had seen me, just hadn't seen the poo. What a champ. 

And I am sitting here feeling a lot of love right now, for everyone in this story (except the druggie who drove into my house) and that is why talking about this stuff helps. Thanks for listening. Or reading. You know what I mean. 

So how was your day?