Feeling disturbed by aunt's revelation

[IDidntSignUpForThis]

Apologies in advance - this is a LONG one. I feel I should give some background before getting on to the "thing". Plus I have the ND tendency to over explain, sorry!

Aunt, 78, emigrated to the USA from the UK around 56 years ago when I was 2. She chose to effectively estrange herself from her family.

Apart from my DM, who is her older sister and 88, her other siblings, my cousins and I have been NC with her for at least the last 18 years following her last visit to the UK.

She has OCD and, I suspect, some kind of personality disorder too. In later life she has developed heart failure and kidney disease and has mobility issues requiring the use of a wheelchair.

Aunt began contacting me around a year ago and I have effectively become her therapist. I listen to her because part of me feels sorry for her but the bigger part realises that most of her issues are of her own making. She has no family in the US and has no friends whatsoever. She is isolated and virtually housebound.

Over the course of the last year I've realised she appears to have one "crisis" after another and has been admitted to hospital three times, though I've never been able to establish exactly why. Because our conversations are predominantly one sided, with me just listening and making the right noises occasionally, I've been able to gain quite an insight into her personality and the way she lives. She definitely has narcissistic tendencies and also appears to be delusional, both paranoid and grandiose. I also feel she has a degree of OCD related orthorexia which centres around eating only what she considers to be "heart healthy" food. She refuses to eat anything that doesn't fit her criteria because it will "kill her".

She is clearly a very difficult person to deal with (read: she's an absolute fucking nightmare!) due to her extremely rigid way of thinking and, basically, her know-it-all entitled attitude. She very obviously needs help in many areas and she does regularly try to enlist the help of various agencies. The help doesn't seem to last very long though and I strongly suspect they just reach an impasse because she won't engage or cooperate. People "never understand" and there are always 101 reasons why she "can't" do something or allow others to do something. She will never, ever take accountability and it's always someone else's fault.

I find myself mostly quite able to distance myself emotionally and not dwell on much of what she says. It's not hard because I've never had a relationship with her. It may sound harsh but I have no feelings for her other than a basic compassion for another human. However, she confided in me the other day and what she told me has been playing on my mind. I promised her I wouldn't tell anyone in the family but I really need to share the "thing", hence this post.

Some time ago (I don't know when or why) she removed the carpet from the living area of her ground floor condo. Because of this the tiled floor of her bathroom is now a slightly higher level than the bare concrete of the room it's off. Due to her mobility issues she was initially tripping over the "lip" and now can't manoeuvre her wheelchair into the bathroom so she doesn't use it at all. She therefore doesn't bath or shower and instead washes with wet wipes. I don't think she washes her hair because she can't stand for long enough at the kitchen sink. She's told me all this before and I have to confess I've not given it much thought. Well, if that's what she chooses then so what? Let her get on with it. What never registered though is the fact that she also doesn't use the toilet!

I've known for some time that she uses incontinence products, particularly at night, as she takes diuretics for her heart failure. But she's now confided that she wears them all the time so that when she needs to pee she just goes. It's not a case of the occasional involuntary leak, she's deliberately using incontinence pants as a toilet! She gets through several a day. She doesn't poop in them though. When she needs to poop she spreads paper towels on her bed (she already uses waterproof sheets) and goes on that then wraps it up and puts it in the trash.

I don't know what to do with that information, I find it quite horrifying and I just can't get my head around someone choosing to do that! I know there's nothing I can do in a practical sense and it'd be pointless trying anyway. For a start she won't let anyone in her apartment due to her OCD fear of contamination. But fucking hell I'm struggling here! I understand OCD can be challenging but can it really be that bad that someone chooses toileting into pants or on paper towels rather than have someone in to fix something?! Is it really the big deal it seems to be in my head? I don't know how to process it. On one hand I feel disgusted and judgey but on the other I feel sad and helpless.

I really don't know what I want from this thread. I think just getting it out is helpful. I'm sorry it's so long (I could write pages and pages) but thank you so much if you've read it all.

Fear of contamination yet shes pooing on her bed basically? i would just back off and come less available.

You could contact social services to assess her however it's very very hard to get them to do that without her consent.
The bar for requiring support is also very high and if she is putting her incontinence stuff in the bin rather than just continuing to lie in it.. then they will just view this as a personal choice.
I know from going through this with my mum. They won't intervene unless the person affected is asking them to themselves. So they might call her and if she says she's fine and that's how she wants to do things, they won't get further involved.
I agree it sounds worrying and it's not how I'd want to live but these are her choices.
You could encourage her to engage with social services?
My mum eventually did accept them coming and putting grab rails up and fitting a bath chair for her.. but she wouldn't accept any care.
Your best bet is getting her to actually ask for help herself.

If she is in the USA and yours in the UK and very low contact why has she started contacting you, there's not much you can do except encourage her to see a doctor, is there anyone in charge at the condo who might help. It's not uncommon to not want to use a toilet if she fears its conraminated.

I feel you OP I’d be horrified. If she was in the UK I’d be saying ring the GP and adult social care but it’s more complicated with her being in the US. It might be worth digging into her state specific laws about vulnerable adults and lacking capacity, to have the full knowledge before you do anything.

Firstly, just sending you a big hug!You do sound so kind!

I used to be a carer, and one of my clients refused to get out of bed, even with a hoist, due to her anxiety.
She wasn't incontinent, but also used pads for her toileting needs. She couldn't change them herself and required care calls four times daily.
She'd have to sit in a soiled pad if she was between calls. She had mental capacity and made this choice rather than go into a home.
It's horrible but your aunt isn't the only person living like this.

How is your aunt paying for her hospital visits? Would she even be able to afford to have carers coming in?

I have to say I have no idea how you are supposed to deal with any of this at such distance, and think that there's really nothing you can do other than pull back a bit from the 'supporting' role if it's causing you problems.

She's had social services involvement before (Department for Children and Families I believe it's called) sometimes at her own request but, as I said, I think there always comes a point when she becomes obstructive and there's no more they can do. I'll see how far I get with encouraging her to ask again.

She’s in the US and you are in the UK? And you have no relationship with her except for the phone calls?

what do you want to do OP? How much involvement do you want to have? Has she asked you for help beyond a listening ear? You aren’t there to sort anything out 🤷‍♀️. Yes she’s on her own, yes it’s sad and tragic and yes, many older people live their lives - and eventually die - like this.

My DM is the one person she's been in any kind of contact with for some years but she's 88 and has had, and is having, health problems of her own. Aunt started asking DM for my number and although DM initially refused to give it without my permission I eventually told her to. DM was becoming more stressed with aunt's calls and I hoped that if she started calling me it would relieve some of that stress. Which it has for DM, thankfully. Except now I've got it 😂

It's not that she thinks the toilet is contaminated, she just can't get to it. The fear of contamination is from other people going into her condo. I'll definitely try to encourage her to seek help but I expect it will be met with resistance.

If there's nothing the professionals can do then there's nothing you can do, if this is causing you upset and stress then walk away, she's obviously known to the department.

Thank you. Yes in some ways it would be far easier if she were here, though in other ways I'm quite glad she's not as I'm able to limit my involvement.
Good shout re: capacity laws, thank you.

Thank you, I appreciate that! I do try!
It's just so difficult to get my head around, that's the bit I'm struggling with. Maybe because I have a bit of an aversion to poo anyway, even my own 😂

I’ve met people like your aunt and have a person similar to her who contacts me frequently.
My suggestion is to gently step back and be “less invested”.
For your own sanity you need to believe there are some professionals somewhere overseeing her situation.

I think she gets state benefits and she has insurance. I really don't know how it all works. I do know that even if she could afford them she wouldn't have them anyway, she won't allow anyone inside in case they touch anything.

I do know that realistically there's nothing I can do and I have to confess I do sometimes ignore her calls. I think it's just the "good" side of me feels awful for her and thinks perhaps I could do more.

Thank you for asking those questions. Truthfully, I don't want to be any more involved than I am now. She hasn't asked anything else of me, except once. She asked me to speak to the hospital social worker on her behalf which I was happy to do because I was able to use it to my benefit, i.e. get a better understanding of the situation at the time.

You're right and I think I needed someone else to tell me that.

People be weird.
It's clearly not you that caused this, because time travel isn't a thing, and there's bog-all you can do about it tbh. (I hear stories from a friends who work in care, community nursing etc, so this is why I don't have a surprised face on!).
Out of interest, what does she do if you say, mildly, "well you know I'm thousands of miles away and can't make you do anything, but, you know, if you heard that someone else was pooing on their bed and weeing in adult nappies because they couldn't be arsed to replace a carpet, wouldn't you think that was weird and not a good idea? Just saying!" ?
And then let her change the subject.

I suspect carefully spaced, mild mannered drop in questions is the best you can do. Like, "is there actually something which makes you very different from all the millions of people in the world who [have a cleaner / let a carpet fitter in their house / insert normal thing here? What am I missing here, usually when something doesn't make sense to me, it means there's something I've overlooked..."

And then don't argue the point, back off and let her think about it later.

You're not going to make her sane, but it's worth a punt if you can at least turn the supertanker of madness round enough so that she's... using a commode, even.

And again: IT'S NOT YOU AND YOU ARE UNLIKELY TO BE ABLE TO DO MUCH AT ALL!!

I am really sorry you are getting sucked into this. I used to work in a community health service organization in the US. I am an LICSW which is a licensed, professional, clinical therapist role. My organization handled group homes for the elderly, indigent, psychotic, or mentally disabled as well as taking patients on an outpatient basis for medication and therapy. We were paid by a combination of private insurance, public insurance, and grants or funding from the state or federal government or charitable foundations.

We handled many people like your Aunt. But its state by state as to what services or funding are available so some states gave pretty good funding and institutions and others—specifically red states and former slave states, are very opposed to spending public money on the poor ir mentally ill. This literally goes back to the ore Civl War era but it continues to this day.

Depending on her state and whether she is rural or urban she may have had a social worker assigned to her to help her access therapy, meds (if any) housing etc…But I have worked with very oCD elderly patients and they can refuse treatment and services and can be dropped from the rolls as non compliant because services are stretched and she has the right to refuse treatment. Its very, very, hard to get someone sectioned and there are few residential programs for people like her.

I think you should blick her calls. She is just venting. If she gets frustrated and lonely she can reengage with community services in her area so in that sense cutting her off may help her realize she needs licsl help.

Thank you so much for this!

I am sometimes able to ask questions or give an opinion but she's very, very good at evasion, deflection and changing the subject! Very occasionally I'll send her a text if I want to get a point across as she's more likely to take it on board, for a little while anyway. I never argue or challenge her, it's not worth it.

A commode!! Excellent suggestion, thank you! I think that's the way to go. Not ideal as she still won't flush the contents down the loo that's currently (probably for all time) inaccessible but I think I, at least, would feel more comfortable.

You say you're ND OP, sounds like it's in the family and she is autistic. You say she has rigid thinking and I expect that is why. OCD is fairly commonly comorbid. She may or may not also have a personality disorder as well, ASD can resemble/be misdiagnosed as a PD but at the same time people with ASD are more likely to suffer from personality disorders due to the trauma they often go through as children due to their disability.

Sending a text probably works better with her as it gives her time to process and reflect on what you say. DS is the same, if I ask him to do something then his answer is often an immediate 'no!'. If I warn him and say we're going to do something later then he has time to think about it and process it and it is more likely to be a yes.

I'm sorry I can't help with any of the more practical details, it sounds very difficult for you.

At her age she will be on the government healthcare in the US, so she wouldn’t need to pay for hospital visits or carers. She would need to let them into her house however, which it sounds like she won’t and therefore isn’t getting the support she needs.

They will also likely be sending her all of her incontinence products for free in the post, which is enabling her to avoid seeking help.

OP, I believe there is also a department in the US (or rather in each state) that is called something like Elder Services or Adult Protective Services. They can investigate cases where elderly people or those with disabilities are not coping with living alone, are living in poor conditions, or are being abused. Have you contacted the one for the city or state she is living in?

That's so helpful, thank you! I've tried googling how things work but it's difficult to know what to even type in!

She sometimes refers to her case worker and says she's contacted them but then goes on to dismiss them as "not understanding", "incompetent" or lying to her. They suggested she try meals on wheels because she can't get out to do grocery shopping, but she can't possibly have them because all the food is bad for her heart.

I strongly suspect that many agencies have dropped her due to her behaviour. Recently one did tell her they were no longer able to help and she told me it was because of... some random thing to do with something else at one time... it made absolutely no sense and I figured what the real reason was but, as always, nothing is ever her fault.

I really appreciate your post, it's very informative. I won't block her; I'm all she has and for the most part I can deal with her venting. If I'm not in the mood or otherwise engaged then I just don't answer her calls.

I'd be very glad this aunt lives in the USA and would be encouraging her to stay there.
Ps. "Poo" in UK English. Poop is a saccharine Americanism and, like your aunt, should stay there.

Oh, actually, another thing is to - if you have sufficient acting skills! - casually drop anecdotes about other people (or yourself). The more dull details the better. Like visual timelines for kids who don't like a change of routine. Lets her mull over the concept of (say) having a carpet fitted, without feeling challenged.

My relative's saintly cleaner has her own elderly relative who goes to a lunch club and lives it. So I hear. I ♥️ Saintly Cleaner even more now!!

Yes, those are all thoughts I've had myself. One of my cousins has a DC with autism and my DD has autism too, diagnosed 3 years ago when she was 28.

I don't yet actually have a formal diagnosis, though it's probable that I'm ND. My DD's assessor very tactfully suggested I might want to pursue a diagnosis when I attended one of DDs assessments 😂I also process things better if they're written down so I totally understand that and it's why I text aunt if I need her to take on board what I want to say.

Thank you for posting, it's really helping just to talk about the situation.

Honestly, my advice to you is to stop having phone calls with her.

They're not helping you, they're not helping her and they're distressing you. There is nothing whatsoever you can do to change her physical situation. The only thing you can control is whether you take the calls.