there is no escape

 

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.

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. 

Invisible Friends, Imaginary Enemies: what happens when a narcissist has dementia

What I'm writing about today is really hard, really honest, and not a comfortable read but I've been getting a lot of sympathy lately, and not a lot of empathy and when you get sympathy instead of empathy you might as well just disappear - because its empathy that helps acknowledge you and sympathy that for all intensive purposes sweeps you, your thoughts, and feelings under the carpet. The truth is that the cookie cutter sympathy people give the families of dementia patients is incredibly condescending, and very painful when we are lumped all together as if our dementia journey is the same and that we are all witnessing the decay of a brilliant and beloved family member to a savage condition and that the ways in which dementia patients act out or lash out is a new behaviour they cannot help. There are families in which the dementia patient was always abusive and the ill-fitting sympathetic noises the family members receive is adding to a lifetime of being marginalised and unacknowledged. This article is about what happens when a narcissist develops dementia.

In order for you to understand the double whammy that is narcissistic personality and dementia, please allow me to take you on a journey of what it was like to be raised by a narcissist parent and what that parent's baseline was before he developed significant memory and cognitive impairment.

In a nutshell a narcissist has:

1. An extreme preoccupation with their own importance.
2. A lack of genuine modesty. When modesty is expressed it is shallow and used as a means of fishing for compliments.
3. A deep emotional need for things to be about them - and to have attention placed on them. They will dominate conversations and are notorious show offs.
4. Shallow charm - often seen as charismatic and entertaining their public persona often masks deep bitterness, pettiness, and a quick temper.
5. They are never wrong and never sorry.
6. A lack of empathy for others. While it is easy to injure their feelings (pride) they have little understanding and no sympathy for hurt feelings in others. 
7. Relationships scarred by a pattern of praise followed by disappointment, abuse, gaslighting, and threats.

There are two ways you get hurt by a narcissist. The first is directly - what they do and say to you. The second is indirectly - its by the way other people treat the narcissist or how they treat you in comparison to how they treat the narcissist, or how they treat you because of what the narcissist has told them about you.

Socially, my father has always been praised as good natured, cheeky and charming but few people use the word charm correctly - its actually not a good thing, it literally means control, manipulation, deception a type of confidence trick. My mother and I have witnessed my entire life the way other people respond to my father, as he is coddled, favoured, given preferential treatment, and treated as an endearing overgrown child. 

Behind closed doors he has struggled to exert control and the ultimate power over his family a very difficult thing for him to achieve when he is neither the brightest nor most able person present and the only way he could achieve such a thing is through an extremely volatile combination of threats, manipulation, and emotional blackmail. 

Like all bullies, he works by isolating his subjects. Mum never returned to work after I was born, and I was systematically brainwashed to think that I was "an uncontrollable little monster" and taught to think that "if anyone ever finds out who you really are they won't love you" and that all my family and friends would be horrified to find out who I am and that he was protecting me from their disapproval. But really I was being taught not to trust the people I loved and given no protection from  the emotional rollercoaster he was taking us on. I could not tell anyone what was happening to me for fear that it would backfire on me - "if people find out I have to treat you this way they will think you deserve it and you don't want that to happen"

There were times when I was simply howling with tears saying "I'm good, I'm good, I'm good!" and that was seen as backchat and that in his day children were to be seen and not heard. My mother never defended me or stood up to Dad, so the only thing I could do was try desperately to say that I was not bad. Sometimes he would get the phone book out and pretend to ring a children's home to come and take me away, (now as an adult I know he was pretending to look up a phone number and dial and its a bit embarrassing but he intended me to believe him and I did. I was 5) I was hysterical begging for my life crying "please don't, I'll do anything you want! Please!" and that is the one thing he absolutely wanted to hear, so he'd hang up the phone and I'd get to run off to my room in absolute turmoil between two concepts of myself - my own truth that I was good and had done nothing wrong, and his truth that I was being repeatedly and traumatically exposed to.

Dad was completely comfortable causing that level of distress in a very young child and to this day is alternately oblivious to, or satisfied by, emotional distress in people around him. He experiences only his own rudimentary feelings - mostly pride based - and views hardships in life by how they impact on him.

Late last year when my mother fell and fractured her face, the ambulance hadn't left the street when he said "now we can buy dinner". There was an entire roast nearing completion in the oven, but Dad is in the Chicky Nuggies stage of wanting to buy junk food as often as possible and views Mum as an obstacle to that. When Mum was two days into her recovery from that accident Dad threatened to leave her because she would not let him drive - which he is medically not allowed to do. He screamed at her that she was against him, and that she hates him and that "I can see I will have to leave you"

When I was trying to prevent my dad from having a fall himself, he growled "I wish I didn't have a daughter" a little stung I countered "I'm sorry I didn't die in my infancy!" and he was completely happy to leave me hanging on that. He likes to have the upper hand and he will never reach out, reconcile, comfort, or apologise. That one hurt a little more than you'd think because he used to have a favourite tangent when I was growing up about how he didn't want to have me and had to be talked into it by Mum (who hadn't had any kids when they met)

In one of the more humiliating moments of my life I can remember a dinner when Dad's artist friend and his wife were staying at our house where Dad went into the tangent about not wanting to have me, and going on and on for so long about it and I was frozen in my chair with these tears quietly streaming down my face and the guests were not saying anything because they were horrified but you think he's eventually going to say "but look how great things turned out" but you'd be wrong.... its just a really long, really awful speech about his life and the way he feels and how he was manipulated into having me. Funnily enough those guests never came to see us again.

I think that actually stands out as the only time my father has revealed that side of his personality in public and I think it was an accident - I don't think he realised he looked like an asshole or that anyone was disturbed by it. Normally its good news for Mum and I if people are around because Dad is happy to show off and talk their ears off. His good mood is our bit of relief although it can be trying when someone comes to visit us and he insinuates himself into the visit and takes over the entire conversation. I have a friend who every time she comes for afternoon tea, Dad gets his book out (the definition of his book: a book of poetry written by someone and illustrated by Dad's art work) and he has to show off the entire thing and talk about it for the entire time they come and then the next time she comes he'll say to me "get my book out" and I'll say "no we're not having the book, you've shown her your book" and he'll go and find the book and make her look at it anyway. Or my Mum's cousin from interstate came for a short visit for morning coffee, they hadn't seen each other for 30 years and will probably never see each other again and he has to do all the talking - show off about his art, regale them with his very dramatic and long winded heart valve replacement stories - and every time someone manages to get a word in edgewise and change the topic... well he has the best stories about that topic too!

And the book! And his paintings! My God he'd give the mailman a painting. Every man and his dog gets a copy of the book pressed into their hands even if they don't fucking want it. Any doctor who has ever treated him gets a painting or a book. I can remember when he wanted to write in a card (to go with a gift of the book) to the doctor who operated on his cataracts. First of all he didn't even know how the surgery was going to turn out - we didn't know if his vision had improved or not or if there were going to be complications - and he's already writing in this card.... and he wanted to write this glorious, effusive message to her... a near complete stranger that has no personal relationship with him and kept asking me what else to say and I said "this is really inappropriate this is what you say to someone you know really well. You don't even say this much in a card to Mum" KABOOM nuclear explosion. You'd think suggesting saying "dear Dr ---, many thanks, from -----" on an unnecessary and maybe not even deserved gift was a personal attack on both him and the doctor. Lordy, back away.

So, with narcissism you have a really difficult, troubled personality that is on its own especially taxing to deal with and what happens when you add dementia into the mix is that you have all kinds of chaos. Dementia naturally causes a strong degree of self interest and loss of awareness of other people's feelings but it sends an actual narcissist into frenzy.

In the prime of his power, my Dad was someone who was afraid and threatened by the goodness and ability of other people, incapable of taking on board advice and ideas and hostile to those who offered them. In short My Mother and I have been his invisible friends and imaginary enemies my whole life.

Now as Dad loses his ability to remember, learn, and even reason or follow instructions, he needs to rely on other people - all dementia patients find this frightening but someone who has never appreciated the ability of his wife and daughter finds it extremely impossible to cope with.

He simply cannot believe us when we answer his questions. We can't be trusted to know what day of the week it is if he doesn't know. We can't be trusted to know if the bills have been paid if he doesn't know if they have been paid. He repeatedly asks questions (a hallmark of dementia) but one reason he has to keep asking is memory, but a large part of the reason he has to ask them repeatedly is because if he doesn't believe the answer he ignores it. He won't take in information he does not trust. And we have never been as trustworthy, capable, or good as him.

He has always doubted and ridiculed us. I was called a slow learner when I had trouble with my homework or left the hardest math problems to the last moment because I didn't want to have to sit there with him and be screamed at for an hour. If I were to treat him as he treated me it would be elder abuse. 

He cannot remember being told he cannot drive, or the medical reasons, so with great hysteria and paranoia he battles us almost daily to extreme duress by all parties involved. 

The cute show offy habits he had before? Well now I will be out walking my dog and total strangers will tell me "oh your dad is the artist, he invited me around to see his paintings one day" OH MY GOD. Please do not come to our house!

Now he can't always conceal his real personality - I was in the middle of Bunnings one day with him waiting for Mum to return to our waiting spot and explaining to Dad that we need to wait here so we don't lose Mum and he screams "I don't like listening to you!" in front of all the people. 

I know Dad, I know. Whenever I open my mouth he has two responses - one if, I can see his face, is to pull a horrible face that is bitter rage and irritation that I would dare to speak, and the other if I'm behind him is to screech "Who's talking?" He is reverting to the "children should be seen and not heard" mantra and basically my role here is to be the servant and not have any say in anything. But if he needs an audience he will stagger all the way down the hall and into my office to talk to me, and then get cross at me, end up shouting, and leave in a huff.

One day I had some new photographs taken to be used as profile pics and just in case pics for my business and he wanted to see them. He took one look and said "you've gotten ugly". That stings a bit whenever you hear it from anyone, but from your Dad? When your profile pics look so much better than how you look with no makeup and shitty house clothes on? From the person who even if it was true, would be the one to say "you look beautiful to me?" And then I look up and realise he didn't have his glasses on. I let out this huge sigh of relief and said "you can't see properly. You haven't got your glasses on and you have cataracts" (this was before his surgery) and he screams at me "don't show me any more photos then! Agreed. I wouldn't want to anyway.

And this dementia phase of his life is the final stage of my mother and I becoming completely invisible.

It took me a long time to grow up, learn to speak for myself, learn to enjoy my personality, and I don't much care for being invisible and I definitely don't look kindly on comments that strip me of my identity or feelings. So I don't enjoy the sympathetic response of actual professionals in this industry when they say"it must be so hard for him". All I want to do is scream "he was always a cunt!" He has the same personality he always had and to treat him like an unfortunate victim is to spit in the face of the actual human baggage he leaves in his wake. Dementia patients are human beings, they are not saints. They come from all walks of life. They have all kinds of personalities, and have done all kinds of things to all kinds of people. 

Sympathy is belittling and dismissive and assumes entirely too much. Empathy is finding out what a person is going through and reflecting that back to them in a way that indicates to them that they have been witnessed and acknowledged. Empathy brings someone who feels invisible into the light and warms them with your kindness. 

Ask, explore, nurture... don't assume. Care. 

I wrote this to help people understand dementia in people with narcissistic personalities because I see hardly anything about this online, and to support people who are carers for parents or partners and family members of narcissists. Fight hard not to be invisible.