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.

Yank here. I was about to post the same thing. She's on Medicare, the medical insurance program for the elderly. It's funded primarily by the Federal government, but administered by the states.

Coordination of care for the elderly is typically handled at the county level, by Adult Protective Services, which is often part of the county health department. Her social worker likely works for her county APS department.

OP, find out what county her town or city is in and use that to google up the contact info for local APS department. You should be able to verify that she has a social worker assigned and possibly have a chat with them about what's going on with her.

That's helpful, thank you.

No I haven't contacted anyone... yet. I didn't know about that department so I''l make a note. I doubt very much she'd cooperate with them though unfortunately.

That made me laugh! I am indeed extremely grateful that she lives so far away and have offered my sincere sympathies when she's lamented that it's now virtually impossible to come back. I absolutely do not attempt to offer any solutions to that problem. I've also told her it's not possible for me to visit her.

I wholeheartedly agree with you on the use of "poop"! I can only blame the fact that talking and thinking about aunt and the things she says prompted me to use her word. Apologies.I usually detest Americanisms.

If no-one has her health POA/LPA, she is deemed to have capacity and refuses to accept any help then I doubt there's anything further you can do apart from contacting social services again. If she's using pullups or disposable pads for urine and faeces are you sure she is actually disposing of dirty items in the bin and not leaving them lying around her house? Can she really get out to her bins? Do you videocall or just speak (if the latter she could be confabulating).

I had a relative like this who refused any help from social services and wouldnt let f&f inside her home. It was only when she was hospitalised following a fall that we were able to get her discharged to rehab then respite to a carehome, which gave us 6 weeks to clean her house and put in handrails in the shower/stairlift etc (which she of course moaned about). However it was apparently back to filthy within a couple of months as she had little mobility and cognitive decline.

It's hard for sure but you might have to call SS and step back.

Thank you! She's mentioned a case worker, is that the same as a social worker? She's also said her case worker is in a different state. Would she have a Medicare case worker? It's so difficult to make head or tail of what she's saying sometimes as she goes off on many tangents and evades questions she can't or doesn't want to answer.

Retired social worker here. I had a client who retired from working at a crisp factory - after retirement the company sent her free crisps regularly. She was voluntarily bedbound. Her room stank..
I was contacted by the district nurse to say that one leg of the client's bed had fallen into the floor boards.
When I visited I found that the floorboards had rotted because she had been defaecating into empty crisp packets and flinging them under the bed.

This lady was cognitively sound and had no identifiable mental illness. It was a lifestyle choice.

Has no one stated the obvious and put a new carpet or flooring in so her chair can go into the bathroom?

@Changerj sounds like aunt is pretty much non compliant and her approval would be needed to make changes to her home without a POA in place. Also OP is in another country to the aunt.

The case worker may or may not be a social worker. They frequently are. It's very unlikely that someone involved in her care or Medicare coverage is in a different state, as they are administered by the state the person lives in. She either misunderstood something or is simply mistaken.

The most direct connection would be through her county APS or Health department.

I do know that realistically there's very, very little I can do to help her situation. It doesn't stop me thinking about it and wishing it was different though.

We only speak on the 'phone. I've often wondered how much of what she says is actual truth and how much is "her" truth. She will say things that, to me, are totally irrational and improbable yet I can tell she absolutely believes what she's saying is true.

I have the horrible feeling that she's living in squalor. I think her condo is probably in a very bad state of disrepair and I suspect it smells bad too. She's indicated that she relies on others to take her trash to... wherever it is it has to go. She can just about manage to put the bags outside her door but she acknowledges they're very heavy due to being full of wet incontinence products. I also get the impression that not many people are willing to help her with this sort of task. She does seem to be very good at pissing people off!

It's an obvious thing to do for most people but as I said aunt has OCD and absolutely will not allow anyone inside her apartment. She cannot have anyone touching her things. It's extremely complex and I don't claim to have full understanding myself but it does mean she will not cooperate or comply.

There's a very slim chance I'd be able to put something in place if I was there but I'm not about to fly out to the States on the off chance.

OP, because the elder care system in the US is complex and varies from place to place, there are people trained in guiding families through the process of needs assessment and provision of care. They are typically called Geriatric Care Managers or Elder Care Consultants. They have a professional association with a website that you can use to find someone local to your aunt who can advise you on what her options are.

https://www.aginglifecare.org/

They don't work for free, but they are sometimes paid for by assisted living facilities. I expect most would do a 15 minute Zoom call with you for free to discuss the basics of your aunt's situation and options going forward.

@MissConductUS thank you for your help, I really appreciate it!

I'm pleased I could help, @IDidntSignUpForThis. There are times when it's good to be one of the relatively rare Americans on MN.😀

Feel free to PM me if you have questions you don't want to post on the thread.

@MissConductUS that's very kind of you to offer, thank you 😊I can't think of anything at the moment. Between you and Pikkumyy I've now got a slightly better understanding of the systems in the US which has been an enormous help.

Its very difficult when people choose to live like this. My late Fathers place was a true disgrace but it didnt seem to bother him at all. He lived in his house for over 50 years and got used to his way of doing things.

Clearing it when he went into a home - well just dont ask. We got professionals in as it was in a truly disgusting state.

I was NC with him for years but my sister found the way he was sucked the life out her. He wouldnt allow anyone in unless you were small (!!) as it was dangerously cluttered. He knew it was awful, but if he admitted that he would have to do something about it and quite honestly he just couldnt be bothered. He told sister once when she spoke to him about the state of the place that it seemed to bother her more than him.

It's difficult indeed. I'm glad I haven't seen aunt's living conditions but I imagine it's not great from the snippets she's told me. I'm sorry you had to deal with that.