Feeling disturbed by aunt's revelation

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.

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.

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.

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.

@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.

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

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

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.

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.

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.

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.

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!!

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.

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?

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.