Lousy daughter, How do I help aging Aspie?

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She is 84 and currently lives with my dad, 92. I have spent all but 2 years of my life within an hour of them to make sure they are ok. Now, due to financial reasons my family and I must relocate to another state. We will be moving within the next year and I have no idea how to help my mom from afar. She recently had an accident which has spawned the worry machine in my head.

My mother has had medical concerns before and I was in the neighborhood to help. Recenlty she broke her hip while in Asia. Nobody was able to contact me because NOBODY was listed on the contact form. She was angry at my father when he finally snuck off and emailed me (2 weeks after it happened) that their return from Asia would be "Delayed".

Since then I had to "Google" where on Earth she was and a friend who is an active AIr Force nurse somehow dig up her information. When I was able to communicate with the people in charge of my mother they were astonished that I did not have the answers to basic questions about her. I kept having to apologize and explain that my mother is "very private". The response, both in Asia and in the hospitals here in the USA were the same "But you are her daughter!"

The guilt is overwhelming.

Since then I have been in constant communication with the medical staff acting as a "translator" (NT/Aspie) at the Emergency Room, with the nurse station at the hospital staff and now at the rehabilitation center. I had to beg, threaten, demand that my actual name be placed on a paper as a contact. Yes, a contact. Not power of attorney, just contact.

So many things could have gone so very wrong if I had not forced myself into the situation. My mother was in poor physical and mental health from exhaustion alone. Mom managed to piss off pretty much everyone and I would go back to these people and apologize and try to explain what she really meant, really needed etc.

I tried to look online for resources, groups, boards for adults with aging Aspies to support. So far, nothing. I am hoping that someone here can share some resources or personal wisdom. I am tired and very much isolated. I want to help. She rejects all help, returns all items and yet I feel like the outside world thinks I am a lousy daughter.


Live from Boca

Susan

Hey Susan welcome.

Hello Susan. I know of nothing for this age group at all. There is very little for any adult, especially the elderly. And even if there was, would your mother accept help? The media present very stigmatising (and incorrect) depictions of Aspergers and it would very hard to educate your mother about the true realities. And what benefit would it really be to her now? If you think she would cope better by simply knowing, that could be so though I am doubtful. My mother was on the spectrum, although she didn't know it, and would never have accepted it, no matter what evidence she was presented with, as her age group (slightly older than your mother) were socialised to considered any mental difference to be personally shameful, and equate "being like that" with institutionalisation and mental illness.

So the issue that this leaves is whether there is support for her that you can arrange for her as an elderly person, (regardless of her neurological status). You will have to be very clear on what kind of support she needs, whether it is household help, personal care, shopping or whatever. The likelihood is that your mother finds change very stressful and her routines are perhaps inflexible to manage that stress, so any support person would need to know of that. Once you have defined her needs - possibly a social worker from a helping agency could do a professional needs assessment - then you will be clearer on what kind of agencies may be able to help once you relocate, and if you are going to be paying, then you can arrange for monthly reports to be sent to you so that you can closely monitor the situation.

If your mother has longstanding neighbours she gets on with, they can provide some social support perhaps; if she is religious, there may be support groups connected through her church congregation or the local ministers may know of support groups for the elderly. If she won't listen to you, is there someone she respects that you could ask to talk to her, a person in her own age group? Arranging help is one thing, getting her to want help is another. Certainly you have your work cut out here.

In the UK there may be some support for older ASD people, though none in the USA that I have heard of as yet.

As for the guilt, that is a judgment you are making on yourself and will not help address nor resolve the needs perspective re your mother so it is a waste of your emotional energy. Other people judge us every day in all sorts of ways, silently for the most part. If we tried to make them all think favourably of us, what exhausted selves we would be and how miserable our lives would become. It's what you think and feel about your plans that matters, and you may feel that you are abandoning her - though she is not alone, and you plan (I assume) to stay in touch and keep an eye on the situation and visit from time to time; that is not abandonment.