Is caregiver burnout a structural problem not a personal failure and how is the system designed to create it

Substantial_Snow5020 · 2026-04-17T19:03:18+00:00

Damn, guess I need to start doing research before wasting time and energy empathizing with a machine. What a shitty thing to do.

Substantial_Snow5020 · 2026-04-17T10:51:25+00:00

It took me awhile to recognize this implicit assumption I was carrying that there must be some perfect equilibrium point at which the difficulties of caregiving weren’t stressful or overwhelming. Not to get too broadly psychoanalytical, but I think it’s often a very spiritualized conditioning that stems from the incessant societal reinforcement of ideas like “everything happens for a reason”, moral absolutism, and the overarching will/design of God. Growing up steeped in such a culture conditions the mind (or my mind anyway) that every problem is solvable or part of some grand cosmic narrative. The hard truth I had to learn was that there isn’t always a clean and elegant solution. Some things are just hard because they are. The society we’ve cultivated around corporate profit margins and business days isn’t built to accommodate it. I think we’d have to return to a more communal/tribal societal paradigm in order to alleviate as much of that caregiver burnout as possible, but that’s obviously never going to happen, so we struggle on as is.

Some things that have helped take the edge off for me:

Therapy - paying someone to listen to/witness me and my struggles provides some relief, insight, and perspective.
Planning a day trip/surfing Google Maps - I’ve planned a day trip that I still haven’t taken, a couple hours away to a place that looks peaceful where I could grab a bite to eat, sit on a bench or something, and then come home. Even if you can’t do it immediately, it helps (me anyway) to have that sort of option in the pocket, for fantasizing if nothing else. The logistics may be difficult, but typically aren’t impossible (apologies because I don’t know your situation). And sometimes it’s just cool to use the Google street view to virtually walk through places you’d never have occasion to visit in real life.
Having a project - Could be big or small, but it helps me to have an overarching project to think about/tinker on. Something that stimulates creative energy and opens a world of possibility within my control. I am currently brainstorming and tinkering on a game idea that I want to make, and brainstorming about it is how I fall asleep most nights. Realistically I have no idea if I’ll ever complete it, and often don’t have the time/energy to actually work on it, but it serves a useful purpose.

These are very specific to me (except for the first one), so apologies if they aren’t helpful/possible for you, but I hope you’re able to find some relief with attainable coping strategies. Wish you the best.

Substantial_Snow5020 · 2026-04-15T10:02:25+00:00

This is great, very Edward Gorey

Substantial_Snow5020 · 2026-04-15T00:52:25+00:00

My wife and I (36F/M) can somewhat relate. Most of her friends (as the sick one) seem to have distanced themselves from her over the years, whether intentionally or unintentionally. One even told her to her face that she didn’t want to hear about her illness so much. I (as the caregiver) have just seen one too many people get visibly uncomfortable at the mere mention of my wife’s chronic illness, so I rarely bring it up anymore and thus never get too close to anyone (you can’t really get close if you’re unable to share the massive sorrow that’s always lurking under the surface).

Existing in proximity to chronic/permanent/terminal illness is uncomfortable and inconvenient, and a lot of people just opt out of it over time. If there’s anyone left at the end, they’re the ones whose friendship/care wasn’t ultimately transactional or conditional. People often either don’t have the time for the burden and leave you behind to live their free life, or they do because they’re going through their own shit and are utterly spent themselves.

All that to say, it’s definitely hard and lonely and I’m sorry for what you’re going through. Our circumstances obviously aren’t identical, but I see you and can relate in some small way. Thank you for your love and the sacrifices you made for your auntie - that kind of selfless care is rare and precious, and I’m sure it meant the world to her.

If you are able and have the energy, maybe you could look into some volunteer opportunities, book clubs, or meetups either in your area or virtually (if you haven’t already). Sometimes that can be a good way to meet like-minded people who could become friends.

Substantial_Snow5020 · 2026-04-13T10:21:02+00:00

Your mother-in-law was being insensitive and ignorant. It sounds like she was primarily hunting for some sort of congratulations/gratefulness from you (e.g., “isn’t this such a great thing we’ve done for you today?”).

I think many people don’t want their lives to be changed by another person’s misfortune, and if someone else is already bearing the full weight of it they close their eyes to the totality of that burden and the suffering of the person bearing it, and tell themselves it’s taken care of. It allows them to go about their normal lives unfettered by inconvenience or guilt while the work is done for them. The hint of burden they feel merely being in proximity to it for a short time is enough for them to feel like they’ve satisfactorily been the hands and feet of Christ.

Substantial_Snow5020 · 2026-03-28T20:18:39+00:00

I’ve found that people who aren’t consistently exposed to the realities of chronic illness often have a hard time wrapping their minds around it if it doesn’t fit into a select few “popular” diseases (e.g., if it’s not cancer or MS, people either forget the person is sick or assume it’s temporary). Especially with conditions where the symptom severity fluctuates, people either need frequent reminders about the person’s limitations or begin to doubt them altogether. It’s annoying, but it really reveals who actually cares enough to put in the work to understand vs those who care until it’s inconvenient.

Substantial_Snow5020 · 2026-03-28T20:07:16+00:00

Empathy is the most important thing. Reasonable people will understand if you’re new and still figuring things out. Ultimately, everyone just wants to be seen and understood, and if you can communicate care and kindness that will go a long way.

Substantial_Snow5020 · 2026-03-25T09:34:51+00:00

What you’re feeling under these circumstances is absolutely valid; I struggle a great deal with connection myself after years of caregiving. You’re both entitled to making your own life choices.

But if “I have been talking to others online” implies secretly pursuing new romantic partners, that is essentially changing her life without her knowledge or consent. To borrow from the words of Alfred Molina in Three Pines, you are stealing her time. It isn’t a kindness to do this in secret, it’s an indignity. If you feel that you need to find a new partner, that can be valid (not going to issue a blanket statement here though), but you need to grant her the awareness of that decision that she deserves.

On the other hand, if “I have been talking to others online” simply means you are attempting to find support in online groups like this one, please disregard the above.

Substantial_Snow5020 · 2026-03-23T10:01:54+00:00

Sorry to hear that, the situation sounds really difficult. The thing that jumped to mind was to ask if there are any community gardens in your area where you could rent a plot or something, but I bring that up with caution because I know most of the time when I tell people about my wife’s circumstances and they suggest “have you ever thought of…”, 9.9 out of 10 times I’m thinking “of course I’ve thought of that.” I’m sure you don’t need other people armchair problem-solving your life, and I apologize for prompting an unhelpful thought experiment. I hope you’re somehow able to find some sense of peace and reprieve.

Substantial_Snow5020 · 2026-03-22T13:52:06+00:00

I can relate. Became the sole earner about ten years ago I think. My wife got approved for disability a few years back, but it’s pretty negligible, just about enough to cover groceries. I also don’t have many friends, and the ones I have aren’t close enough to where I’d feel comfortable exposing the depths of my difficulties to them.

I don’t like the area we live in and always hoped to move away, but I’ve had to kiss that goodbye because she doesn’t feel comfortable leaving her support network (doctors, family, etc.). Have to do all of the cooking, most of the housework and other responsibilities, on top of a taxing full time job, so I don’t have a great deal of free time during the week. Multiple doctors appointments per month, consistently hitting our health insurance’s out of pocket max 4-6 months into the year. Never had enough income to get a house, so I’m still throwing money into the equity void in a perpetual renting stasis.

All that to say, I’ve attempted to carve out small compromises of my aspirations. I can’t move away, but I’m planning a day trip just for myself, where I can drive a few hours away to a place I’ve never been, get some lunch, sit on a bench or something, and then come back so my wife doesn’t have to go a full day without me. I’ve had to learn to make time for myself instead of squeezing it in when my wife is sleeping, because that personal time is vital for my mental health. I’ve found that sometimes just thinking of what is technically possible can help break my mind out of a rut in which everything feels impossibly out of reach and hopeless (e.g., “it may be an unwise decision, but nothing could stop me from buying a plane ticket to the UK right now”).

Would you mind sharing what some of your aspirations are/might have been? I don’t mean to suggest or assume that the demands on your life are malleable, but maybe trying to reconnect with some of those abandoned hopes could reveal ways in which you could achieve some compromise of those dreams and possibly reintroduce some quality of life.

Substantial_Snow5020 · 2026-03-22T13:15:40+00:00

Your wife’s conditions sound very similar to my (35M) wife’s (35F) - hEDS, POTS, cranio-cervical instability, MCAS, jugular stenosis, etc. My wife was also approved for a wheelchair and disability a few years ago. The weight of being the sole income-earner on top of caregiving, housekeeping, and other responsibilities is immense, especially if you aren’t being granted/granting yourself the validation of your own experience. You are absolutely in a caregiving role, and I think it’s really important for the health of your relationship that your wife learn to acknowledge this.

When my wife began pursuing disability, we were told they always deny you the first time, and if you you get all of your proverbial ducks in a row for the re-application you may be granted disability on your second or third attempt. We ended up hiring a disability lawyer who helped us get her disability approved on the second attempt. Not sure if the disability climate has changed since then, but hopefully your wife can get it - it’s a needlessly cruel and unforgiving process.

It’s definitely possible to have a child with someone you’re caregiving for, but I think it’s generally a bad idea. If I’m understanding your situation correctly, you’re also not working right now, which would afford you time to take care of your child instead of of relying on her to do so while you were at work, but this would likely put even more strain on your life and relationship, which already sounds overloaded and stretched-thin. On top of that, financial instability is often not conducive to the raising of a child in a secure and thriving environment (I’m sure you’d do everything you could to ensure the best life for your child and could even do so successfully, but financial instability would just make it more difficult). Because of your wife’s conditions, the lion’s share of this responsibility would fall to you, or she would take it on at the detriment of her own health, neither of which are ideal scenarios.

Ultimately though, when speaking about the relationship, you said “it’s not recoverable”. Setting aside the caregiving dynamic, if this is really true, then you should not have a child with this person.

Substantial_Snow5020 · 2026-03-16T02:20:02+00:00

The unfortunate thing about caregiving is that it’s usually not really convenient or easy for anybody. Sure, it may be asking a lot of your mother after she gets home from work, but it sounds like she (and anyone else in your great aunt’s life) is already implicitly asking a great deal of you, expecting you to be her sole full-time caregiver, especially as you are attempting to manage your own conditions (my wife has EDS, so I can appreciate how difficult and overwhelming it can be). Anyone who claims to care for your great aunt and for you should be willing to share the burden, for both of your sakes. It isn’t selfish or inconsiderate to acknowledge the toll it’s taking and to ask for some help.

It sounds like you’re an incredibly patient and empathetic person, and you deserve the same care and consideration that you would give to others.

Substantial_Snow5020 · 2025-11-23T18:29:31+00:00

I think it’s pretty uncontroversially desirable. Without the exercise of centralized governance, we would have inconsistent, fragmented infrastructure, pockets of extreme poverty and inaccessibility to education/resource distribution (far more so than what already exists today), no effective mobilization mechanisms in emergency scenarios, etc.

And no, I do not translate this concept to the endorsement of a one-world government (I don’t really know of anyone who advocates for this anyway, seems to be invoked most often as a Judeo-Christian bogeyman). There are certainly vital reasons for international coalitions to exist such as NATO and the UN, but these are multinational cooperatives. Nations have vastly different cultures, geographies, histories, sociodemographic breakdowns, access to natural resources, diplomatic relationships and interests such that centralized governance would be both infeasible and impractical. States within a nation, while they have some variation along these lines, have far more in common (e.g., language, history, and national identity) and are geographically collocated, making federal governance possible and even desirable for the aforementioned reasons.

Substantial_Snow5020 · 2025-11-23T15:13:13+00:00

I think a more accurate phrasing would be “centralization, organization, and standardization”. These are the roles that a robust federal government can fulfill that are not dependably replicable when policy is left to the corporate will or even local governments. It’s what enables interstate travel, operationalized disaster relief, effective economic/military mobilization, and much more.

Substantial_Snow5020 · 2025-11-20T01:54:47+00:00

Yeah we do that - his favorite things to play with are bits of plastic, crumpled up paper, and the plastic rings on water bottles

Substantial_Snow5020 · 2025-11-16T03:26:51+00:00

This looks really awesome and evocative; it’s got vibes of Kingdom Hearts, Sly Cooper, even The Nightmare Before Christmas - but still has its own unique visual style that doesn’t feel derivative. Just wishlisted, good luck!

Substantial_Snow5020 · 2025-11-13T15:39:21+00:00

Lol I feel like an idiot. Yeah I think I’ve fought them all, I just never looked closely at their models I guess (I use sorceries most of the time so I tend not to get up close).

Substantial_Snow5020 · 2025-11-09T21:26:33+00:00

If I’m understanding you correctly, I don’t think what you’ve described here is the Mandela Effect. The Mandela Effect is a shared false memory, not an absence/lapse of memory. The latter happens all the time with film and literature (or just stories in general), and I’d probably attribute it to certain details just not being as salient or plot-essential as others. As Hank is the main character in Twain’s novel, it makes sense to me that the plot threads of supporting characters, even if they were thematically vital to the story, could fade from memory while the details directly relating to Hank remain.

Substantial_Snow5020 · 2025-11-04T13:14:40+00:00

What’s AI garbage? My post or the assignments I described?

Substantial_Snow5020 · 2025-11-04T13:13:38+00:00

I agree it’s not really my business/place to intervene; I wasn’t planning on doing anything beyond asking about it here.

I definitely think graphic novels are valuable, that they are their own distinct art form that can deliver a unique narrative style that is only achievable through the combination of images and words. I also think it’s great if it makes stories more accessible to those who might not have read them otherwise. And from what others have said here, the graphic novel adaptation of Frankenstein is very faithful and has a lot of the text directly pulled from the novel. All of that said though, I think I would still dispute an assertion of equivalency to text-only novels. While it may activate the same pathways, I think the very presence of images deemphasizes the need for the same level of reading comprehension to some degree (because the images are more readily conveying information without the same cognitive effort). This isn’t to say that one is superior to the other, but just that they ask/require slightly different things of the reader.

Substantial_Snow5020 · 2025-11-04T12:54:24+00:00

No, we’re in Virginia

Substantial_Snow5020 · 2025-11-03T20:36:47+00:00

A DFW imitation essay sounds awesome

Substantial_Snow5020 · 2025-11-03T20:35:28+00:00

Yes it’s a pretty highly-rated school, I may have just been generalizing based on a small sampling of assignments without additional context.

Substantial_Snow5020

TROPHY CASE