PD + Dementia = Circus of Horror x 2

[feenix]

I'm back here again reading posts to regain perspective and save my sanity, after being away for a while.

Yesterday was a marathon morning of supervising moms third in home assessment, trying to get her accepted for a higher level care package and Telehealth doctor appointment because her scripts have run out and she refuses to leave the house.

I'm burned out, confused and frustrated because it seems pointless and hopeless. She doesn't want any more people coming into the house that she has to talk to, she doesn't go out and doesn't want to. I've done so much for them getting services in place, which they agree to and act enthusiastic about it front of their assessors, but when I've done all the stressful work of organising the service, they refuse to participate, saying they are happy just being alone. But then she's back on the phone to me with her waif act, calling over and over inventing drama trying to get me to go over until I get so stressed I ignore her calls, don't listen to her messages but get anxious because what about if it's a real emergency and I'm ignoring her.

uBPD enabling mom, 94, diagnosed early dementia, but her whole life she has pretended to not remember things when she doesn't want to deal with them, so it's more confusing for me now.
uNPD dad, 95, vision impaired, although I think he exaggerates the extent of the loss because he manages to do things when he wants to.

They both have heart conditions with pacemakers which they stopped having monitored and don't bother about. A remote monitor was sent to them by their doctor, but dad had it returned about 2 years ago. They both neglect their own health, but are capable of making their own decisions. A while back my sister and I were talking about getting power of guardianship in place, dad was reluctant, but eventually agreed, but it never happened and now I'm glad we didn't go ahead with it because if we did, I would be legally responsible for the neglect, when in reality, I can't control them, they are both very stubborn and uncooperative, argue with suggestions and refuse to accept change or interventions. When they do verbally accept something, they don't implement it, either saying they forgot or denying the whole thing.

They argue with each other, complain about each other, sabotage each other by hiding things, he gaslights her, making things up, they resent each other, often don't speak for days or weeks after verbally violent arguments and I get dragged into their drama. They both exaggerate and accuse each other of exaggerating. When they tell me about something that happened their stories will be completely different so I never know what's real.

Me: I'm uAutistic, have auto immune conditions, CFS, CPTSD from childhood and adult emotional abuse, currently recovering from a toxic neurological injury. Divorced 20 years ago after abusive marriage, no current partner or friends, my daughter recently moved out of the country. My sister used to help with co-caring for our parents, but has come down with her own serious disability and no longer helps, most of her time and energy goes towards herself now, so I'm completely alone trying to manage my dysfunctional parents as they decline.

I want to run away and save myself, my daughter has made a good decision to leave. Even though I miss her and would benefit from her help and support if she was still here, I'm happy she is taking care of herself and following her passion, I never wanted her to end up like me, and did the best I could to not pass the family legacy of emotional dysfunction onto her. She still has some emotional issues, but she has incredible self insight, has addressed her issues through therapy and has a very successful and satisfying life, is dependent on no one and makes choices based on what is best for her. She is my inspiration for boundary setting, but I still struggle because I was programmed from birth to not have any.

We are in Australia, so our systems are different from other places, and not very good, budget cuts, very long wait times, staff not available even when services are approved. Complex system that's impossible to navigate, lots of hoop jumping and gate keeping which seems designed to make people give up and go away.


But in spite of my own disability and limitations, I'm managing the system one step at a time, for my parents, I would prefer to go NC for my own health, but I'm doing what I feel is right, even though they abandoned me emotionally and then physically when I was a child, I just can't do that to them.

The thing that confuses and destabilises me the worst is dealing with people from services about my parents. They both put on a facade of normalcy in front of strangers, making them appear perfectly lovely, normal human beings, but behind closed doors it's a horror circus.

Service providers and assessors who I'm trying to work with to help my parents only see my parent's masks, I struggle with verbal communication already because of my autism, so I write notes to hand to the assessor with what I want to say, but they don't get it and I'm left trying to put in place approved services with uncooperative parents. I have POA and manage to handle their finances ok, but getting that in place was a long drawn out process because dad didn't want to give up control even though he could no longer see well enough to do it himself. He wouldn't come to the bank to sign the paperwork, it took almost a year of chaos and threats of abandonment and utilities being shut off before he reluctantly agreed.

My auto immune condition is exacerbated by stress, I get so sick I crash and can only do the basics for myself for survival, I have to rest so that I can function again. My parents don't get it, or don't understand or pretend not to understand or keep forgetting. I have no idea where the real cognitive decline ends and the personality disorders start. It's always been a crazy circus behind the closed doors of my family, but now it's worse and I'm the only capable sane person left trying to deal with the mess by myself.

I'm late self diagnosed autistic, my difficulties and sensory issues have been with me my whole life, but they were never identified and addressed, I was always blamed for being intentionally difficult. I grew up feeling like I was an inconvenience, incompetent and basically a bad and inadequate person. Mum later admitted that she always knew I was different, but neither of them bothered to get help, instead they used anger and shame to make me more compliant. It worked very well for them.

I still struggle with guilt and shame, I avoid conflict and feel anxious just being in the presence of my parents, especially when they are together. I have an easier time being able to relax when I'm with them separately. I was and still am the family scapegoat, even though I'm the one visiting and caring for them. My father never asks me for help directly or thanks me for anything, it always comes through mom, his enabler, flying monkey and triangulating waif.
They are a symbiotic closed system and after being together for 75 years, doing a dance of dysfunction with each other, they are like a toxic system that works for them to keep them functioning and getting their immature emotional needs met at the expense of whoever they are in contact with. Over the years they have driven everyone else away, even their lovely neighbour has stopped visiting them. I'm all they have left, but if you ask them, they have done nothing wrong, it's everyone else who has abandoned them.
Autism apparently has a genetic component, and I sometimes wonder if perhaps dad is also undiagnosed autistic, underneath his personality disorder, it would help explain a few things. There's no way he would have been so successful in life and business without the help and support of my mom who has always been very socially intelligent and devoted to him.
They absolutely need each other to survive and I'm terrified to think about what is going to happen when one of them goes first. I can't have either of them living with me, I wouldn't survive a week, but neither of them could cope living alone.

When the assessor was talking to us yesterday she was telling us how her own mother lived alone independently until she was 94, but then had a stroke. The assessor told us that she then moved her mother in to live with her, so she could take care of her properly.

I instantly felt terrible, conflicted, ashamed. Of course I want to do that for my parents, but the reality for me is that I wouldn't survive, but how to explain that to someone who hasn't experienced personality disordered parents, so I stayed quiet.

[NarcKiddo]

I am sorry you are struggling with this. It sounds really hard.

Your final paragraph stands out. Sometimes assessors are angling for other options - and it is quite possible she was hoping you would stay "oh, yes, of course I will move them in with me when the time comes". You don't have to explain anything, of course, but equally you don't have to remain quiet if someone comes out with something like this. You can, without explaining, simply say something like "that will never be an option for me so please do not suppose it might be". And if you get pushback of any sort, even just a funny look, you can add something like "there is a difficult history. I don't want to go into it."

[Tribe16]

"that will never be an option for me so please do not suppose it might be".

   This is brilliant.

Feenix, I don't have any words of wisdom for you other than put on your own oxygen mask first. It's the only way to get through this nightmare. I can't imagine how difficult this must be for you. Glad you came back.

[GoodPesto]

Hi Feenix,

I would like to mirror certain parts of your post.

I'm burned out, confused and frustrated because it seems pointless and hopeless.
I want to run away and save myself
She (daughter) is my inspiration for boundary setting, but I still struggle because I was programmed from birth to not have any.
I would prefer to go NC for my own health
I was and still am the family scapegoat, even though I'm the one visiting and caring for them.


Tribe16 said what I think as well would be important. Your oxygen mask first, or you won't be able to support anyone truly if that is what you would like to continue doing.

[GoodPesto]

TBH I got mad at the dynamic that you risk your health for your abusive folks that will have lived a pretty long life no matter what happens, so that I forgot to express my sympathy for your situation. It is tough, I am sorry.

[feenix]

Thanks everyone for reading and for your kind comments and suggestions.

Earlier in the latest assessment I had been specifically asked about my involvement and if I would do more. I made it clear that weekly visits were my limit and that I wouldn't be moving in or having anyone move in with me. Because of this, respite care was requested for if my mother found herself alone, which was a relief because I honestly don't know what I would do if she was alone, she has never had to be alone or take care of herself her whole life, she never grew up and at 94, with dementia developing, completely enmeshed with my father, she just couldn't function. He is her whole purpose and meaning in life, without him, she doesn't really even exist.

The assessors story about how she took care of her own mother seemed truthful, but thinking about it now, maybe it was a manipulation tactic. If it was designed for that, it worked because it made me feel ashamed and guilty, triggering past trauma, it felt cruel. But like I said, she probably had a normal lovely mother and doesn't understand the dynamic that I'm dealing with.

After the previous round of assessments, when both my mom and dad had enthusiastically agreed to social support with outings and visits, I got hopeful that perhaps they would get some outside company and cheer up a bit. Neither of them are in constant pain or discomfort like some elderly people. Theoretically they should be quite happy, content, grateful and relaxed. All their needs are being taken care of, they can do exactly what they want all day long. They have a comfortable environment, food, entertainment and are being offered even more.
I still can't get my head around it, cognitively I get it, but I just don't relate to it. These people who I believed were sane, rational adults, who I trusted and believed my whole life are in fact not much different from crazy, manipulative self serving cult leaders with the emotional maturity of children.
They put on acts for their assessors, playing roles, I've watched this my whole life, I grew up watching them change into different people in front of strangers, so to me it seems normal, I don't notice it when it happens.
After the last round of assessments, I did what everyone had agreed to and organised social activities with their providers, I got the activity timetable and went over to explain what was available so they could decide what activities they wanted to be picked up for. But it all collapsed almost immediately. She didn't want to do anything and had never agreed to any of it, she didn't remember, but wouldn't have agreed anyway. He said yes, quite enthusiastically and wanted me to read the program to him, after I had finished, he was silent, said nothing, I asked if there was anything that had sounded like something he would want to do. He flatly replied no. My feelings of defeat and hopelessness started kicking in as I asked him what kinds of activities he had been expecting and what would he like to do if it was available? He replied 'nothing' with a flat tone, and then they teamed up to explain to me how happy they are just being left alone at home together and would I stop trying to make them do what they don't want to do. They both then denied having ever agreed to anything.
Later, when the report arrived I was able to show them that they had in fact agreed to social activities. Dad said 'No, that's not true, I never said that', mom seemed confused and said she didn't remember anything and asked what assessment, did I have an assessment? My confusion and cognitive dissonance kicked in, again. How much of this is genuine memory loss and what is manipulation? No matter how much I understand, it gets me drawn in, mislead, believing the illusion they create and then I get brought crashing down as reality returns.

When I was recently talking with them about mom's latest assessment, getting her prepared for it, so she would know what to expect, they were sitting together, listening. I brought up the fact that they need to be honest with the assessor about what they really want, not to put on an act and say things that aren't true, that if they don't want to go out and do things, to say that. I also added that it makes me look bad when they request and agree to things, it gets approved but then doesn't get implemented. It was like talking to a brick wall. They said nothing. I pressed them a bit harder and asked if they understood what I was saying. Mom remained silent and dad arrogantly replied that he would keep that in mind.

Just writing this is making it very clear, I'm done. I'm no longer going to proactively do things to help improve the quality of their lives.


I'm finished playing the good daughter role, I've been cast in the role of the bad child by my father and he's never going to see me differently, no matter what I do. I'm the scapegoat, the black sheep so maybe it's time I prove him right.
I'm still recovering from the stress of Monday and have put my own plans on hold, my own schedule has gone out the window, again. They destabilise me and I'm trying to get back on track with my own life again.... until the next round of chaos hits.

Once again, thanks for reading, and for any comments and support, it really helps.

[TimetoHeal]

Feenix,

I just wanted to stand up and cheer when I read this:

"Just writing this is making it very clear, I'm done. I'm no longer going to proactively do things to help improve the quality of their lives."

You have dropped the rope.  You are putting yourself first from now on.  They basically said it themselves, that they just want to be left alone and want you to "stop trying to make them do things they don't want to do".  There is your "Get Out of Jail Free" card.  Take it!

I just went through this epiphany moment myself with my mother.  I wrote her a long email after talking to her during a crisis and spending hours on the phone with my brother trying to figure out what we could do for her.  I suuggested me going to the doctor with her, getting her on appropriate meds, counseling, time out of the house, etc.  She shot it all down with a response email.  So, I have it there in writing.  She doesn't want my help, and I will no longer offer it.  I'm sure she'll have another "crisis" sooner or later, but I will simply say, "I'm so sorry you're going through that" and move on. 

[doglady]

I really feel for you Feenix.

I can certainly relate:
Right down to the ageing parents who won't accept help, who often present as 'lovely old people' to those outside the cult, who agree with health professionals' assessments and recommendations and then turn on their children, who neglect their own health, and who scapegoat one particular adult child. Top it all off with the gaslighting, bullheadedness, lying, denying, triangulation, blaming of everyone but themselves, the word salad 'conversations,' and the ridiculous and childish arguments they have with each other, and it all sounds eerily familiar. 

I'm in Australia too and while Aged Care packages can be a bit of a rigmarole, here in the south east corner I know many elderly people who have excellent help in their homes. The main reason our parents don't have the same is because they seem to make it their mission to sabotage attempts that involve anyone but their own exhausted offspring doing it all for them.

I knew an occupational therapist whose job it was to assess for these packages and she saw it time and time again with 'certain' (by the sounds of it, uPD) older folk. PD people never ever want to do things the easy, straightforward way. Despite all their guff that they 'don't want to put anyone to any trouble,' they seem to delight in the turmoil they cause while simultaneously acting as if they don't know what they've done wrong.

Anyway, they can do all that if they want. I say Let Them. Natural consequences and all that.

I heartily applaud your courageous decision to drop the rope. I did. In the end it was them or me. My health was suffering, and they seem - despite all the odds - to be living forever. I think there must be life-extending superpowers in being in a covert uNPD/BPD pairing.

It's time for you to have your life, Feenix. You've got this. I get that it's really hard when you have ASD traits and cPTSD. That can make it even harder to believe in yourself. Plus, you've also been trained not to trust yourself.

I support you fully whatever you do. I look forward to hearing about your journey to freedom.

[doglady]

Hi again Feenix
Just wanted to mention (apologies if you're already aware), but there is a strong link between trauma, childhood adverse experiences and autoimmune conditions. See article for a review.

https://pmc.ncbi.nlm.nih.gov/articles/PMC3318917/

Your health is so important, arguably much more so than that of people who've lived to their mid 90s. They've had their go. Now it's your turn.

I know when I dropped the rope with my elderly parents, my lifelong IBS symptoms stopped flaring up so often and most of the pain was gone. Symbolic? Maybe.

[Rebel13]

One of the best things I've learned in therapy over the past year is how to say, "That's not my problem to solve." How much of a relief is it to "drop the rope" when other people are complaining about their problems, playing "yes, but" and coming up with every excuse in the book for why they can't fix their lives? I can be kind and sympathetic or medium chill, depending on the person, but then I get to turn my focus back to my own life and use my energy and time in service of making my own life better. Other people sure don't understand sometimes, but I for one applaud all of you who are letting your PD parents sit with the consequences of their own decisions.

[feenix]

Thanks for these extra replies and support, thanks doglady for the link, I'll check that out.
If I hadn't already dropped the rope, I certainly would have done after my weekly visit today. Last week's emergency that I had to fix ASAP, which I got around to today, was forgotten, the case of the invisible ants. Dad had basically ordered me to get someone over to spray. I took over some ant baits today, which were ignored, apparently the ants have gone now.
Today my father had ran out of beer and he would really appreciate it if I went and got him some now. My sister is supposed to take care of ordering and having this kind of thing delivered, on Mondays. My mother's emergency was the batteries on the control panel of their bidet had run out and the seat wasn't warm when she sat down. The beer and batteries have gone on the shopping list for Monday and I retain my label as the selfish bad child for not catering to their every whim immediately.
But that wasn't all, a referral had come through for mum for at home silver chain nursing and I spent about half an hour trying to organise the first visit, I'm not going to bore anyone with the details, but it was chaos on both sides, I ended up giving them my mother's home phone number and telling them to call her to organise an appointment, which they said they had been trying to do. She denied it!
I feel like I'm living in a sitcom, only it's not funny.
But anyway, I'm looking into getting some support counselling for myself next week.

[TimetoHeal]

Feenix,

I am so sorry for this latest encounter with your parents. I feel stressed and upset for you.  I can so relate.  Good for you for putting the stuff they "need immediately" on the list for when YOU feel like doing it.  You may even want to introduce them to this thing called Instacart or DoorDash, whatever you have where you live.

My eyes popped open when you mentioned the "invisible ants".  My mom is supposedly having an infestation of ants in her house right now.  Crazy thing is, I was just at her house right before this started and I didn't see a single ant.  Also, she has had multiple people out to spray multiple very strong chemicals (which are most likely 1000x worse than any insect) and supposedly nothing can stop them.  Also, it appears none of her neighbors who are very close to her house have any problems.  It's all very mysterious...

[feenix]

My parents are beyond being able to learn anything new, they might be able to call one of these delivery services, but they couldn't pay electronically. Between their age, visual impairment and early dementia, they are stuck with what they already know.
I took an electric kettle over the other week, hoping that they would stop using their glitchy gas stove top for boiling water. But neither of them was willing to try using it, my father got this pained look on his face like I had just asked him to rewire the whole house, not plug in a kettle. I took the kettle back home, now I have a spare if mine breaks.

"Invisible ants" should be a meme 

I ended up taking some beer a couple of days later after mulling it over. I didn't want to be cruel or punishing, just because that's how they treated me, but I wanted to stop putting their needs ahead of my own. So I grabbed a couple of cans at my convenience and dropped them off when I was nearby. No conversation, besides hello, I just put them on the table and left immediately. Dad wasn't around to see and there was no thanks, but I didn't expect any.

I've sent off a self referral form for some counseling, filling it in was triggering. About 15 years ago I did quite a bit of therapy, counseling and groups, some was supportive and helpful, but I also had some bad experiences and ended up feeling worse, being blamed and re-victimised. I'm not feeling particularly safe with heading back into therapy and the options here are limited, especially due to financial constraints. But at least I've taken the step and in the meantime I'm using AI chat apps for instant feedback, support and validation. In some ways I find it easier than talking to a real therapist.

[TimetoHeal]

My parents are beyond being able to learn anything new, they might be able to call one of these delivery services, but they couldn't pay electronically. Between their age, visual impairment and early dementia, they are stuck with what they already know.
I took an electric kettle over the other week, hoping that they would stop using their glitchy gas stove top for boiling water. But neither of them was willing to try using it, my father got this pained look on his face like I had just asked him to rewire the whole house, not plug in a kettle. I took the kettle back home, now I have a spare if mine breaks.

"Invisible ants" should be a meme 

I ended up taking some beer a couple of days later after mulling it over. I didn't want to be cruel or punishing, just because that's how they treated me, but I wanted to stop putting their needs ahead of my own. So I grabbed a couple of cans at my convenience and dropped them off when I was nearby. No conversation, besides hello, I just put them on the table and left immediately. Dad wasn't around to see and there was no thanks, but I didn't expect any.

I've sent off a self referral form for some counseling, filling it in was triggering. About 15 years ago I did quite a bit of therapy, counseling and groups, some was supportive and helpful, but I also had some bad experiences and ended up feeling worse, being blamed and re-victimised. I'm not feeling particularly safe with heading back into therapy and the options here are limited, especially due to financial constraints. But at least I've taken the step and in the meantime I'm using AI chat apps for instant feedback, support and validation. In some ways I find it easier than talking to a real therapist.

I can totally relate. When I suggested to my mom using instacart or other shopping services, you'd think I was asking her to go back to school and get a phD or something.

Good for you in just dropping off the beer in a nonchalant way without staying to hear more complaints or requests.

I totally get it about therapy too.  My experiences have been mixed, some good, some bad, but not extremely helpful on the whole vs. cost and time commitment.  I learned only recently that therapists are barred by their code of ethics from really giving us advice!  Did you know that?  They are supposed to stay neutral and not show an opinion or show much emotion.  I get it, but I think this can feel invalidating to us sometimes.  It's probably why I've often felt very frustrated in therapy.  I think the appeal of AI for a lot of people, is it seems to give very definitive answers.  I know we need to learn to figure it out for ourselves, but sometimes, when we are in the state of confusion and turmoil we arrive in to therapy, we need some good solid advice, like do this first, then this.  Anyway, I wish you luck and applaud you in trying to get help for yourself. 

[feenix]

I can totally relate. When I suggested to my mom using instacart or other shopping services, you'd think I was asking her to go back to school and get a phD or something.

Good for you in just dropping off the beer in a nonchalant way without staying to hear more complaints or requests.

I totally get it about therapy too.  My experiences have been mixed, some good, some bad, but not extremely helpful on the whole vs. cost and time commitment.  I learned only recently that therapists are barred by their code of ethics from really giving us advice!  Did you know that?  They are supposed to stay neutral and not show an opinion or show much emotion.  I get it, but I think this can feel invalidating to us sometimes.  It's probably why I've often felt very frustrated in therapy.  I think the appeal of AI for a lot of people, is it seems to give very definitive answers.  I know we need to learn to figure it out for ourselves, but sometimes, when we are in the state of confusion and turmoil we arrive in to therapy, we need some good solid advice, like do this first, then this.  Anyway, I wish you luck and applaud you in trying to get help for yourself.

Thanks for your reply TimetoHeal. Yes, I know therapists have to remain neutral and not judge or give advice. Thankfully, Grok gives me a detailed plan of instructions and micromanages every detail, which I usually ignore lol! I've told it to stop acting like Data from Star Trek, and just listen and then provide some emotionally supportive and validating feedback. It's doing its best and does learn, and the best part is that it doesn't get angry and defensive when I challenge it or give it some negative feedback. I find ChatGPT is better for a more human like experience though. Maybe that's why I use Grok more, I find humans a bit threatening....which is the whole point of trying therapy again. I really would like to be able to trust people again, and myself to be able to discern the good from the bad.

I'm going back to the one place that was helpful in the past, my previous therapist has retired now, but it's a trauma and domestic violence based service for women, so I'm hopeful whoever I get will be helpful in someway. I'm particularly interested in a yoga group which is designed for healing and trauma recovery. Anyway, I have my triage phone appointment booked for Thursday. I'm still feeling anxious about it, but as the saying goes "feel the fear and do it anyway ", it's a very safe space, so I know I'm going to be ok.
I had another unpleasant and triggering phone conversation with my mother over the weekend. Now that her cognitive capacity is declining, her filters are failing and her real agenda and emotional manipulations are clear. She still has some control because after she's blurted out something rude and inappropriate, she notices and tries to reel it back in, suddenly changing her tone. It's triggering old childhood trauma from when I was a vulnerable child and she had all the power and used to just let it rip, when dad wasn't around. When he came home, he took over the control and she turned into the sweet, subservient kind character, selflessly catering to everyone but herself. To this day I have no idea who she really is.

I wished I hadn't phoned her, but I was being thoughtful and letting her know when I was going over next. Note to self... don't do that again, just show up.