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I can’t begin to imagine the weight of your story, and I know there are no perfect words to ease the pain of living this life. Please know that my thoughts are with you during this.

I can only imagine the depth of your concern for your daughter’s future, and I wish there were more I could offer. For now, please accept my deepest sympathy and a warm, virtual embrace.

That's so difficult, man. I'm sorry. It shouldn't be this way.

> I have a 10 year old daughter with a very rare genetic condition. She has no one to care for her if I pass away.

Wow that sucks.

When my daughter was one and half years old, her mom passed away after one year of absolutely exhausting illness. I thought it was tough to be left a single father, but hey my daughter is perfectly healthy, so maybe I have it easy...

> I can't afford to give away 30% of my worth to law firms that will allegedly guarantee my daughter will be safe from some money hungry assisted living centers or other such nasty organizations

Is there no-one you are close to that you could trust to look after money? It's a hefty burden but don't we usually have someone in our extended family or friend network that is trustworthy?

I certainly agree that I personally wouldn't want to trust most professionals in the business.

Have you looked at the social welfare programs in other countries and considered moving there? It would be a lot of work to get citizenship there for you and then your daughter, but it sounds entirely feasible within a decade

Social welfare can be flaky too. I suspect especially so in countries with increasing numbers of retirees.

In New Zealand it is fantastic that we have social welfare as a last resort for the desperate, and sometimes it can be amazing. But too often it doesn't work out well.

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I visited some relatives who are Jehovah's Witnesses. I was blown away by how rich their social life was. They hung out with people who lived nearby all the time.

I'm sure that kind of lifestyle also exists outside of a religious context, but it was quite striking. I've never seen anything like it. It made me wonder what life used to be like a hundred years ago, and what we've lost, or given up.

I guess church is the prime example of a Third Place, which appear to be in short supply.

In that case, however, you also see the drawbacks. The Witnesses discourage socialization outside of the church and also use shunning as a method of social control: if you disagree with the church on anything, your options are to acquiesce or lose your entire social network, even family members.

I share the desire for more social lifestyles - I think suburbanization is a huge driver of this - but want a secular form which doesn’t have the drawbacks many religions offer.

Yeah, I've been wondering what the special sauce is. Is the religion part necessary to hold the whole thing together? e.g. you could replicate the other aspects, but would it last? It seems like people derive significant meaning from the religious aspect. Though this may also extend to ideology in general (e.g. political groups, or Effective Altruism meetups for example). The "shared mission" seems to be an important part of it.

I was a scout leader in my late teens and early 20s, and that had quite a lot of "sociality" to it, that went beyond "meet up for drinks occasionally".

I don't go to church. My family has worked hard for generations to separate themselves from exploitative churches.

But now, at the end of this process, I am able to see better the cost of this separation. I don't regret it, and I am glad it was done, but it's clear that neither in nor out of a church is the 21st century adult made whole.

Somewhere there has to be a happy medium.

I truly hope this comment has been seen, a few good trusted friends that would honor op’s memory by taking care of good usage of his daughter resources is the safest way to go, by far

My parents set up a trust for my disabled brother and made my uncle the guardian. Unfortunately he was dishonest and greedy and embezzled it. Fortunately he did this before my parents had even passed, so we had time to come up with a backup plan. (The backup plan was me, and I never felt like I could start my own family as long as I was responsible for my brother, so ... that's been limiting.) Anyway...

... I've often felt like it would have been much safer to either make a legal firm administrators of the fund or at least have multiple family members on it, so that they might keep tabs on each other and make it harder to just steal. I've actually spent a lot of time thinking about what went wrong and what might have been different. If that uncle hadn't died I would probably have spent that time fantasizing about ways to kill him, but, as it is ... I just don't get to retire.

I love my brother and have made peace with most of the consequences of what happened to him, because at a certain point you just have to accept the hand you're dealt and keep going. But the bitterness of what the world has done to us is still in me and I don't think it's ever going to leave.

tl;dr - definitely don't leave just one person, even family, with access to a disabled person's money

Yes this is why I said a few, and having a legal firm in the loop is probably a good way to improve chances of things going well.

I’m sorry you had to live through that it’s truly horrible.

(To be clear, I was trying to elaborate on your point and not disagree with it.)

I wish there were better legal resources for the parents of disabled children to do this in the US. Like the original comment pointed out, the legal expenses of setting up a trust are steep, and if you're already fighting an uphill battle with medical costs it can be impractical. Or even totally out of reach.

If the alternative to capitalism is a system that relies on working-class people making charitable donations to other working-class people...

Well, yes? This is how it has always been throughout history?

> And crawling on the planet's face, > some insects called the human race.

What we don't do for ourselves, and for one another, isn't done. (Except in some cases, when it's done by fruiting flora externalizing gamete distribution costs.)

I will admit that I realized, too late to edit my original comment, that government welfare has also been a tremendous boon to members of my community with disabilities. A good social worker is worth their weight in gold. I happily pay taxes in order to keep my neighbors off the streets.

0. Richard O'Brien, The Rocky Horror Picture Show

I'm sure you didn't intend it, but responding to the GP in a cross-examining way ("don't you have friends?", "I would think your top priority") comes across as personally aggressive. That's not how we want people to be treating one another here, especially on the such a painful and intimate topic. Whatever the person who is living such a situation may need, obvious internet criticisms are not it, so comments like this don't help, only hurt.

https://news.ycombinator.com/newsguidelines.html

> comes across as personally aggressive

Oof, this is obvious in retrospect, and I regret it. Unfortunately, there are some very useful rhetorical angles which do not translate to text, and pity is one of them.

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Parentification is never a solution. It’s merely a cruel way to spread misery to another person who doesn’t deserve it.

Many people find it fulfilling to help those in need.

Yes but expecting someone to feel that way is irresponsible and selfish.

Sure: but ideally it is a choice not an obligation.

That would be an incredibly cruel thing to do to a child.

This is awful and cruel to do, no.

> I hate to say this…

Then don’t say it. Do us all a favor.

i think this is a reasonable consideration.

(not a response to your particular comment but to the entire subthread)

I have a feeling that the spectrum of responses to this comment—how varied and how intense many were—is mostly a function of cultural differences.

Ways of relating to such matters vary a lot with national/cultural/religious/family background. Unfortunately, on an internet forum we lack the usual implicit ways of recognizing such differences which help modulate this sort of conversation in real life.

https://news.ycombinator.com/item?id=23308098