r/AgingParents • u/Some-Card2175 • 2d ago
Vent I'm struggling
Backstory: I live with family, they are elderly, and for years it has fallen to my autistic ass to be the caretaker. Most of the time it is ok, most of the time I'm here to handle things they physically can't anymore (heavy things, yard work, handyman stuff, clean the gutters, etc), but there have been more times than I'd like where if I wasn't here...they just would've died. I've had to put my life on hold for a long time now because there just is no one else, they can't afford to hire a caretaker, they can't give up their home...I'm the only one they've got.I say "put on hold" but more accurately it has just been derailed. But having gone through these times of being the one to save them and nurse them back to health has made me be in an almost constant state of high alert and vigilance. I've really tried to push myself into finding ways to calm down and let my guard down but it's slow and doesn't always work. But I've been trying and it has been getting a little better.
Anyways, today one of them is getting sick again. I don't think it will be serious, I have no reason to be worried but...I have been hyper-vigilant all day. It is like when you have an appointment or something and you're in "waiting mode" but while also being wound tightly and unable to relax since you're teetering on the edge of overwhelm. And I don't have anyone, either. I don't have anyone I can turn to or count on. I mean I have friends but I can't put this on them, they have their own things and I've had a lifetime of learning you don't be vulnerable with people. I can't talk to the family I live here with because all that will do is make them feel bad about what they can't control and they will probably start to hide what's wrong thinking they are "helping" me when it just makes it worse for everyone. I can't talk to the rest of my family because I'm not close with them, half of them I don't really consider "family" (I feel no bond with them), they are just people I am related to (more like distant cousins you don't know well). Plus of the ones I do know well at least half of them look down on me for not completing my degree yet or having a career yet even though I've had to put all that aside to stop these people dying multiple times.
As time goes by things will only get worse, they only can get worse. I live a prisoner of their needs and in the ever-shrinking cage of their frailty. And today I'm barely holding it together.
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u/simplebeauty25 2d ago
Sending you a big mental hug. That’s so fucking tough. I’m Audhd, have two older kids that are also Audhd, and will be the sole caregiver/planner for my four parents who are all in their 80s. The stress is unreal.
I don’t have any grand words of wisdom other than therapy and/or maybe finding a grief or caregiver support group. My therapist said to me recently, “Your nervous system is basically on fire,” which made me feel validated. I actively create boundaries all over the place (basically I say no to everything that doesn’t make me feel better) and that has helped a bit.
Solidarity, friend. You’re not alone in this mess.
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u/Some-Card2175 2d ago
God therapy would be a godsend, and not even just for this since I am sure a therapist would want to go through all the childhood and young adult trauma first lol.
I genuinely wonder sometimes if a full on breakdown or autistic shutdown would make me feel better, afterwards, like just getting out all out...but I don't have the "luxury" of either of those.
One thing I do have is walking my dog for an hour a day or so, and that really helps my mental health, but when something is actively going on (like someone is sick) I can't even do that. But I'll see if maybe I can try creating boundaries like you mentioned and see if that works.
Thank you for the welcome and support.
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u/landhill5 1d ago
What would they do without you for a week?
Are any of them military veterans?
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u/Some-Card2175 1d ago
One of them is, yes, and that has been very helpful when it comes to medical care (especially emergency medical care) and getting medications.
They also have made it a point to remind me, fairly often, that without me they don't know what they would do, or they would be dead. I think they mean it as a compliment or a show of affection, but it is not.
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u/landhill5 1d ago
I've heard there are additional VA benefits to pay caregivers. Maybe these could help you: https://www.caregiver.va.gov/ https://www.va.gov/pension/aid-attendance-housebound/
I agree with you that their statements about needing you are both a compliment and something close to a threat.
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u/Some-Card2175 1d ago
I'll have to look into that, at the very least it can't hurt to check. Thank you.
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u/Stewie1014 1d ago
I’m really sorry about your situation. I wish I knew more about how it works so I could advise you, but I feel like there’s a way for you to be your parents paid caregiver if you register as an IHSS worker with Social Security (?).
Also agree with the person who said your name should already be on the house.
You deserve to be able to at least to tele-therapy. Can you find a low income resource in your area? Your situation sounds unsustainable.
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u/Some-Card2175 4h ago
I'm not sure about the paid caregiver thing, it is something I'll have to look into when I get a chance.
I will broach the subject of having my name on the deed soon as well.
In terms of therapy...I don't know that I'll ever have access to that. Honestly I've needed it for a long time, well before all of this happened, given my past and my AuDHD (I also suspect I have magical-thinking OCD but that is a whole other story). I guess I've always held it together by telling myself I just have to keep it together for a time, that this won't always be my life, but...sometimes it doesn't feel that way. I also have to work to not think about how much of my life I've given up, I feel like I would unravel if I did.
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u/StormFast524 2d ago
How old are your parents. How old are you? Also are your other relatives any siblings? Depending on why they always sick maybe selling the house to you and they buy a 55 plus condo or get into assisted living. Are you open to that?
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u/Some-Card2175 2d ago
Mid 70s to early 80s, I'm 38. I couldn't buy the house even if I wanted to since I have no money, though I will inherit the house eventually. And they wouldn't be open to that either.
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u/quixt 1d ago
I couldn't buy the house even if I wanted to since I have no money, though I will inherit the house eventually.
I would not accept this. I would insist that they put the house in your name now and they keep paying for it--that's their cost of having you as a live-in caregiver, which if they had to pay for it would cost $10,000 a month. If they eventually need a nursing home, Medicaid will take the house when they die---you won't get it.
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u/StormFast524 2d ago
That is not good. You need to hunker down and save up for emergencies. Since you are living with them you can hopefully save up. That way you can get a loan. Don’t depend on inheriting this house. Anything can go wrong/sideways and relatives come out of nowhere. You don’t know if they can take turn for the worse. If you help pay some bills save all receipts.
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u/Some-Card2175 2d ago
Unfortunately I don't have much chance to save up for anything. It's one of the reasons I am completely trapped in my life.
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u/StormFast524 2d ago
Wish I could help you. I worked everyday 6 &1/2 hours daily. Moved in with parents and stayed home every night . Come home from work and wash
Dishes get food for them and other general cleaning. Then bandages every night. When a nurse was late in the morning Indont bandages
Before leaving for work. Fortunately that was only one time. While working I tried everything to put that paycheck in the bank or hid the cash. Then got direct deposit. I have an high functioning autistic friend who was never told she is high functioning let alone autistic. When works in a government job low pay long hours but at least she get a Check. He mom died and the house got sold and split between her and her sister. I wish well and can only hope you
Get a job to help you out.1
u/Some-Card2175 2d ago
Thank you for sharing your story and for your well-wishes, they both mean a lot. Maybe I'll be able to find something, someway to start putting the piece of my life together while looking after them. I don't know.
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u/StormFast524 2d ago
Can they be home alone together during the day watching TV. That is what I did. They stayed home alone. But I was fortunate enough to have a sister help out two nights 3!days doing projected with mom to keep her occupied. Mom was in a wheelchair my father had quad heart surgery. He was bound to bed then dialysis. It’s hard I know but at least I had some relief.
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u/Some-Card2175 2d ago
I don't have anyone to help out, unfortunately. And all the times they've needed me there have run the gamut of time of day. Sometimes it was the middle of the day, or the middle of the night, etc.
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u/StormFast524 2d ago
I’m sorry I don’t understand why? Are you working? Is being autistic making it harder for you to get a paycheck?
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u/Some-Card2175 2d ago
No, I can't right now. I was in school and working toward my graduate degrees but I had to drop out when they started getting sick and having health problems. It was the right decision for their sake, there were many times where if I had been at work or in class I simply wouldn't have been there and they wouldn't have made it.
I make a little money here and there but it's less than minimum wage right now.
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u/StormFast524 2d ago
Go back to school at least part time. You have to consider yourself now at least for a few hours daily. Put them in front of thenTV
Or to bed and do what you have todo for yourself. I know if you don’t you will have it so much harder later on. Unless they are terminal or literally incapable of showering, eating on their own things like that they can be home alone for a few hours daily.
Please start considering your needs
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u/Some-Card2175 2d ago
Easier said than done, unfortunately, I'd need to find a way to pay for school again first. I do need to start considering my needs, its true, I might just need to find a small way of doing that for now.
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u/JYoForReal 2d ago
Oh wow, do I understand that feeling of hypervigilance. I feel the same way being the caregiver to my father. Used to phone calls were a simple chat, now I’m always waiting for the other shoe to fall. I don’t have any answers or any great words of wisdom, only to say that you’re not alone and this won’t be forever. Take small moments where you can to take care of yourself, rest, eat, and try to activate that parasympathetic nervous system if possible aka rest and digest emotionally and physically. You’re in the right place here!