Advice on caring for aging autistic mother

[Pam]

I don’t have any advice but I certainly can empathize. I care for my mom and it’s hard as hell.

[arianne]

Thank you, @pam – I can certainly empathize with you too

[Test]

I watch my parents entering old age and I think, this is so autistic I can’t believe it.

My dad is a practicing lawyer and in an old age home. He literally sees clients in the common room. I don’t think it’s because he’s old so much as he can’t take care of basic needs like making meals and getting to bed, and his wife (third) is sick of dealing with him. He is really happy there though. I think he probably would have like to have been there his whole life, frankly.

My mom’s special interest is travel logistics. She plans such intricate, off-the-wall trips that customs stops her frequently because they don’t believe a single woman her age is going to those places alone. She has sent us emails that say things like, “I’m in Kampot, if they kidnap me don’t send a ransom, it’s not worth it.” Or, “I think I have gangrene but don’t worry, I left the jungle and flew to a hospital in Dubai.”

Maybe this is not relevant to anyone, though. Because my parents were way too terrible to us to expect that we’d be helping them. We see my parents a few times a year. But they know we are not going to be going out of our way for them.

[marcia]

Hand raised with empathy too. I only wish I also had useful suggestions.

My dad was in a nursing home for the last few years of his life after hydrocephalus left him too unstable for my mom to be able to take care of him. He’d been nice for a few decades prior (not his M.O. when I was a kid) and in those last years he was back to being a belligerent shit and was that way up until the time he couldn’t talk anymore. The most healthy part about it was my mom learned to live without him in a slow step-by-step way rather than the “here today, gone tomorrow” way. It seemed healthier at least from us watching.

She’s still an energizer-bunny type at 85, who does all the things she couldn’t w/my dad for years, obsessed with crossword puzzles so her mind doesn’t go as quickly as her mom’s did. She’s newly very social, wanting to experience every drop of life left, believing that other old ladies who still can get out have interests and know places she doesn’t know about so the answer to every ask is Yes. She’s admittedly a little exhausting when we’re around her. Yet it’s also so inspiring. She’s been clear that the day she can’t drive anymore she wants to be put in a home where women don’t put on lipstick just to go to lunch and there are always movies and things to do.

My MIL is the real pisser. She’s a textbook narcissist who was put into assisted living when a UTI wiped away all of her capacity to mask so we got to see the real Skelator underneath and she was no longer able to care for herself. While my husband thought she’d go back to her sweet (passive-aggressive) self, once we had heard how she truly felt about everything, we couldn’t stop seeing it so she wasn’t trying to hide it all the time. 3+ years later, she still pleads with him to let her live with him, yet he’s wrecked after just going to see her for a few hours.

What’s next or how to be supportive depends on who they are in old age. Many old autistics shed their camouflaging because they realize “if not now, never” so we get to see people we’ve not really known before. In my mom’s case, that’s for the better. For others, ugh.

[Gordana]

I wish I had something useful to say. I emphatise, but this area is a great fear of mine. My parents are in their 70s now and are still quite independent, but it is getting more and more difficult by the year.

My mother is extremely high-maintenance. She has health issues and is emotionally very needy. She doesn’t know she is autistic and refuses any mention of her not being super normal, insisting that I am the problematic one and she is “the way 99% of people are”. We live far away – which is by design on my part, but her need for connection translates into very long phone calls. In an ideal world she would have somebody she can talk to (or talk at, rather) about herself for hours every day, if not constantly. To say it is exhausting is an understatement. My dad switches off. He is going deaf, and we’re pretty sure it is very convenient in this respect. She would never expect that kind of attention from anybody outside the family – because to everyone outside the family she is the good girl, an altruist and martyr who takes everyone’s burden on herself, and is bitter that I (the female child) am not willing to provide it. I’ve been “training” her for years to respect my boundaries, and it included going no-contact for up to six months several times. Now she actually texts me first to ask if it is convenient to talk and respects if it is not, and in return I make an effort to listen to her. I have no idea how we’re going to manage at the point when she’ll need physical care.

[Valerie]

I see you all and I too don’t have any solutions.

Wr have in our circle my 82 YO narcissistic mom; my father passed in 2014. And my autistic in-laws are a whole other situation as well as my husband’s relationship with them. 😂

None of whom of course know they are autistic and I can’t even begin to go there. Given the ages for the parents it’s just not worth that conversation and tension.

I will say since I became aware of where I sit on the spectrum understanding the “why” has made some of this a bit more tolerable.

[Minami]

Sometimes I don’t know whether to be relieved that my autistic, lovable-but-difficult mother died before she could get old and that my dad ditched us and has no expectation of me and/or my brother caring for him in his old age.

He’s experiencing brain shrinkage now, and I wish he was someone I cared about enough to…care.

I did care for my mother in her final year; she did hospice in our one-bedroom apartment for about 10 months. She really did just stop masking. All the ugliness she’d ever felt towards me came out, and it was a lot of it. All I could do was avoid her as much as possible by sleeping in and staying in the living room. Which of course made her even more resentful.

I don’t regret bringing her home for hospice, but I was also relieved when it was over. I guess what I would say is that it’s okay to feel exhausted, impatient, and even resentful at times, because you’re human and you’re going through something difficult too. And when it’s over eventually, don’t beat yourself up if you feel relief.

One thing that really helped me was something my fiance told me, while I was telling him how terrible I felt for not doing more for my mother, for not doing enough and for letting her down. He told me that no matter what I thought – or even what she thought – I should remember that I had given her the very best I could at the time.

So I think that’s good to remember too: don’t tell guilty. Because whatever you end up doing for your parent, you will have done the best you could.

[dana]

Thanks Minami. That is always a great reminder.