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[–][deleted] 2 insightful - 1 fun2 insightful - 0 fun3 insightful - 1 fun -  (9 children)

Wouldn't it be better to keep him at home with you or hire nursing help so he could live separately from a bunch of vulnerable people? I understand you're mad about bad things happening but trying to force the facility to do something they don't think is safe doesn't sound like the right way to deal with it, and there are other things you could do.

[–]coffee_addict[S] 2 insightful - 1 fun2 insightful - 0 fun3 insightful - 1 fun -  (8 children)

The convalescent home will allow us to take him home. I talked to his social worker, who said that she can make a special exception that he will not lose his benefits if we take him home temporarily. The problem is logistics. He is a 200-lb four month old infant in terms of his abilities to do things. He needs to be in a one-story home with no steps at all (he can't do steps), and he needs all kinds of special equipment in order to deal with him -- bed rails, potty chair, walker (he could take a few steps with a walker prior to the convalescent home, but he unlikely can't walk at all anymore due to muscle atrophy), wheel chair, stand up shower equipped with hand holds and detachable shower head, lift chair, special straps to help get him in and out of bed in addition to the bed rails... and there is much more. It's a long and expensive list of equipment to buy, especially for a temporary living situation. He is way too much work for me and my sister, especially because we have kids of our own and are homeschooling. The social worker said normally they would pay for someone to come and help us, but they will not send a helper for someone who is COVID-19 positive... they don't want to put the worker at risk. And those in-home care workers cost $30 an hour, so we can't really afford it.

Also, want to add that I am not MAD, I am FRUSTRATED. I get that everyone is doing their best in an unprecedented situation. And hopefully, you are starting to see why my dad doesn't want to live like this anymore. He hates being so needy. He hates that he can't dress/undress himself. He hates wearing diapers. He hates not being able to get in and out of bed alone. He feels like this is not quality of life and doesn't understand why the state is forcing him to live like this "for his own protection."

[–]comments 1 insightful - 1 fun1 insightful - 0 fun2 insightful - 1 fun -  (7 children)

Reading all this it does somewhat sound like everyone is doing the best they can. And that your father is NOT being just thrown to the street because he's positive, which is good.

Really, this story seems to me more like it's about end of life stuff and the covid aspect of it just isn't that relevant. Is he unable to choose death right now if that's what he actually wants?

It's a little confusing. It sounds like you could make it work if you had to, it's just a huge amount of trouble and would require sacrificing other things. You could side-hustle, or ask for donations of labor, time, or equipment, or give up things that aren't bare absolute life necessities. You're just as capable as I am of ideating about possible solutions in your situation that don't involve suing the place for doing what they think is right -- which you apparently have the time, energy, and money to do. If you haven't even been doing as much as your sister's doing presumably it should be pretty easy to take up at least a little bit of the work. It just seems like you aren't being completely honest here about what you could do and how much you're willing to try to push off onto others at their expense and risk. I don't mean to be mean or whatever, I get that this is a difficult situation, but I don't think I'm doing anyone any favors by leaving it unsaid and uncommented on here.

Again, this really seems like it's about, as you've said, end-of-life autonomy and the option to choose to die.

And again, I don't mean to be callous, but it seems suspect at this time. In a situation that is primarily extremely personal to you, your family, your dad, you've done a HUGE amount of generalizing, basically using this extremely personal story as some sort of advocacy for killing all old people. That is extremely disturbing and makes me question the motives of the post, especially when it's so comfortably in line with all the other ones people seem to be posting here about covid.

If you're really here honestly, I hope you take some time to personally come to terms with what's going on with your father's situation and your role in it. I think that's primarily what's needed here -- the solution for your family will emerge when you can be fully bluntly honest with yourself about the reality of his situation. Maybe having a heart-to-heart with your sister would help.

If you're not here in good faith, fuck you, and you and all of yours will be haunted by this until the end of your line unless and until you make restitution, if you're doing it to try to kill our elders and our people.

[–]coffee_addict[S] 1 insightful - 1 fun1 insightful - 0 fun2 insightful - 1 fun -  (6 children)

The reason I posted this is because I wanted to start a discussion about old people's rights. Currently, old people have no sovereignty. In his state, assisted suicide is illegal, and the state won't let him do anything risky that would allow his life to end. And in their zealousness to protect him from this virus, they have destroyed the tiny remaining bits of quality of life had left. Is forcing someone to live in extreme pain and isolation really "for their own protection?" Especially when they no longer desire to be alive?

I appreciate you opening the door to a calm and rational discussion. I was my dad's primary caregiver for 7 years. My sister took over last year because I had a breakdown because I just couldn't do it anymore. Is it moral for me and my sister to sacrifice devoting time and energy to our husbands/children for our father? Should we rent a home that is suitable for my dad to live in and live partly with our own families and partly with him? Should we not help our kids keep up with their school work so we can change my dad's diapers and meet all of his others needs? Should we sacrifice our own ability to retire someday by spending every penny we have on his care now? Clearly, you have never been a caregiver of a very sick person and have no idea the extreme amount of physical and emotional sacrifice the caregiving job is. Anyone who chooses that for a career is an angel.

What do you think I said that indicates I am advocating "for killing old people?" I would like a cut/paste of whatever gave you that impression. I have a feeling you have misread what I have written. If not, maybe I could clarify, because I am not advocating "killing" old people, I am advocating that they be allowed to live as they see fit, even if it means that they risk dying. He never should have been forced from his home by the state in the first place. I am certain he would have fallen and died shortly after being released from the hospital, but it is how he wanted to die. And now that he's in Assisted Living, he's trapped in a system he never wanted to be a part of, living a life he doesn't want to live anymore.

I find it silly that you have decided that the reason this COVID situation sucks for my dad is because I am not bluntly honest with myself about the reality of my dad's situation. It sounds a bit unhinged, and I would like you to elaborate on what exactly you meant.

[–]comments 1 insightful - 1 fun1 insightful - 0 fun2 insightful - 1 fun -  (5 children)

Well it certainly changes my perception of the situation to know you were already his primary carer for 7 years. But I think my concerns with your being willing to offload risks onto others here, like those at the assisted living facility that don't want to take him back, still stand. But not your being willing to offload risk or something onto your sister, it's the opposite if anything since you've been caring for him for longer and at higher burden than she has. It's ok to say no and expect people to do their part too, but it's not ok to demand people take on risk.

I don't think old people should live in care-homes, personally. I think it's the responsibility of the family to take care of them. I think families should be planning for this way ahead of time. It seems strange the way we do it right now, to me. I guess it could be worse, maybe there's less elder abuse in a managed facility than there would be in domestic situations, idk, but it seems a little strange to me that this is the way we're dealing with this reality of the cycle of life.

I find it silly that you have decided that the reason this COVID situation sucks for my dad is because I am not bluntly honest with myself about the reality of my dad's situation. It sounds a bit unhinged, and I would like you to elaborate on what exactly you meant.

Lol! "Unhinged" because I called you out!! This is why nobody wants to hold people accountable when they do actual wrong stuff, and why horrible things just slide every day. The costs can be very high, if this weren't anonymously on the internet and someone saying this sort of stuff had significant influence in my life. Nooooo thanks. And I'm not interested in being influenced by orders from anyone, certainly not you.

From your first post:

The majority of people dying are over 80, and I am guessing that my dad and his girlfriend aren’t the only old people who are ready to go. Was saving them worth destroying our economy over?

"I am guessing my dad and his girlfriend aren't the only old people who are ready to go" "was saving them [worth it]"? This is pretty clear advocation for killing old people. Not harshly phrased, but not really ambiguous either.

(nevermind that it's not only old people that are dying, and that we still don't know the long-term effects of the infection, like its closest relative SARS1 does.)

I am racked with guilt for siding with the state a year ago when they forced him out of his home and into the Assisted Living Facility. I thought that once my dad adjusted, he would like the Assisted Living Facility and his quality of life would improve with better care. But I was so wrong. I wish I had been respectful and fought the state to let him stay in his home. He wanted to die there, and I was selfish by insisting that he continue to live in pain in a crippled body instead of letting him make his own choice to not live.

This is what makes me think this is essentially a personal problem. Granted, it sounded from this like you had more of a role in making this situation the reality than maybe you did (how much did it matter what you did?), because it was a state policy that took him out of his home.

And looking at it again, your account is brand new for this topic in particular. Why post to SaidIt? Why post this at all? Is it real? Why does it line up so much with the other propaganda being posted here? Why connect this story to Covid and to what the policy should be for literally anyone else aside from your personal family situation? Why is the post so heavily tied to covid, and so un-tied to discussion about assisted suicide legality? That's why it reads like propaganda, because you do seem to connect it, and you seem to support the "haha covid's all a hoax let's reopen no there's no real risk nevermind anyone who might get hurt by it they're just wrong" line of argument. Which is IRRELEVANT to to the issue of your father's sovereignty and desire to die.

IF you're real and here in good faith and sincere and all that (If you're not you've already heard what I have to say): Yes, you were advocating killing old people, please own up to it. And you were trying to put others at risk by attempting to make the facility take your father against their wishes, please own up to that too. And maybe accept that you feel guilty about your Dad's situation, and that the loss of his sovereignty and how it's impacted him isn't really related to the current crisis, which has only served to highlight a problem that was already there long before. And it sounds like you're still minimizing the costs to others. The high cost of taking care of your father has to fall on SOMEONE, whether or not it's a high cost. I'm sorry you're going through this but please stay focused on the issues at hand for you and don't use them to advocate for putting others at risk.

[–]coffee_addict[S] 1 insightful - 1 fun1 insightful - 0 fun2 insightful - 1 fun -  (4 children)

"Yes, you were advocating killing old people, please own up to it. " We are going to have to agree to disagree on this one. I think giving the old person an option to live their life the way they want, even if it risks their own health, is humane. You see it as murder. Fine. You are entitled to your perspective, as I am entitled to mine.

"And you were trying to put others at risk by attempting to make the facility take your father against their wishes, please own up to that too." Please copy and paste where you think I wrote this. I think you have mis-read what I wrote. What I said was we considered it and realized that was a bad idea.

"And maybe accept that you feel guilty about your Dad's situation, and that the loss of his sovereignty and how it's impacted him isn't really related to the current crisis, which has only served to highlight a problem that was already there long before." DING DING DING! I am trying to highlight how the system is broken and doesn't necessarily protect people in a way they want to be protected.

"And it sounds like you're still minimizing the costs to others. The high cost of taking care of your father has to fall on SOMEONE, whether or not it's a high cost." What does that mean?????????

"Why post to SaidIt? Why post this at all?" One of my best friends thinks this is a discussion we need to have as a society and she pushed me to post this. And I like SaidIt. It's my favorite social media site. Obviously, I am violating all kinds of HIPPA laws for my dad and his girlfriend, so I have to post it anonymously.

"Why is the post so heavily tied to covid, and so un-tied to discussion about assisted suicide legality?" It's not ONLY about assisted suicide, it is about the sovereignty and rights of old people. The horrible, horrible situation that my dad is living through right now is a direct result of the state forcing him into Assisted Living against his will. I want to highlight how much he is suffering and deteriorating in a situation that is supposed to be for his own protection. I am not mad at either the Assisted Living or Convalescent Homes. Both are doing their very best, but they are seriously restrained in their ability to properly care for him because of these "protections."

"haha covid's all a hoax let's reopen no there's no real risk nevermind anyone who might get hurt by it they're just wrong" line of argument." I already said very clearly in the comments what I think of the situation. I will copy and paste here: "I don't know what to think about the virus itself, and I certainly agree that the severity of the virus/pandemic situation has been wildly overblown. They have taken away our civil liberties, put millions of people into permeant poverty, permanently closed many small businesses while making oligarchies like Amazon more powerful, devalued the dollar so even those of us still working have less purchasing power, and given away billions of dollars in tax funds to businesses that didn't need it/had a long history of irresponsible spending."

"I don't think old people should live in care-homes, personally. I think it's the responsibility of the family to take care of them." I hate to be the bearer of bad news, but the state of Nevada disagrees with you on that one. They believe that once old people get to a certain point of deterioration, they MUST be in a facility.

[–]comments 2 insightful - 1 fun2 insightful - 0 fun3 insightful - 1 fun -  (3 children)

I don't have much time to reply more, sorry. I feel I've mostly said my piece.

"Yes, you were advocating killing old people, please own up to it. " We are going to have to agree to disagree on this one. I think giving the old person an option to live their life the way they want, even if it risks their own health, is humane.

I didn't mean about assisted suicide. (I think people need to stop hyping death up so much, it just makes it so confusing. WE ALL DIE. It's fine, it's normal, it's a beautiful part of life like any other. We should feel free to choose a good death.)

I meant about the part I quoted from your first post:

The majority of people dying are over 80, and I am guessing that my dad and his girlfriend aren’t the only old people who are ready to go. Was saving them worth destroying our economy over?

"[in Nevada] once old people get to a certain point of deterioration, they MUST be in a facility."

They can't be helped at home by qualified people? I guess I didn't realize that, though I ought to have been able to extrapolate it from the other content in your post.

And again, still, "Why is the post so heavily tied to covid"? What's the point of connecting this post about sovreignty in old age to covid, unless you're trying to make a post about covid too?

[–]coffee_addict[S] 1 insightful - 1 fun1 insightful - 0 fun2 insightful - 1 fun -  (2 children)

I know, this has gotten time consuming. My son keeps asking why I keep taking school work breaks to type on the computer!

So for clarification on this: "The majority of people dying are over 80, and I am guessing that my dad and his girlfriend aren’t the only old people who are ready to go. Was saving them worth destroying our economy over?" I don't want to make it seem like I was advocating deliberately letting people in facilities get sick with coronavirus. I wish the government had thought things through better before putting regulations in place. In my mind, they could have thought through more make-sense solutions in order to keep the economy going. For example, the virus spreads most indoors, especially on public transit. I think the government should have immediately set up hand washing stations outside of buildings/public transit stops and required that everyone wash their hands before entering a public building/transit and wear a mask while inside. I feel like all retail stores should have been allowed to fill orders called in/ordered online and people could pick them up, much like take-away food,rather than shutting them down altogether. The excuse for crashing the economy and throwing millions of people into permanent poverty was to "save lives," But the lives they are saving is mostly of those who were going to die soon anyway. I guess what I am saying is it wasn't worth destroying the entire economy to save the lives of the elderly; that more make-sense solutions should have been implemented.

As for the rules of living in home: If my sister or I had the "right" kind of home (one story, modified for a handicapped person with wide doors, walk in shower with no step, etc) and we could afford to pay for 24 hour live-in care (which runs about $10,000 per month), NV would have let him live in our home. But neither of us had the right home or budget to allow for that. I am pretty sure CA has similar rules, too, but I can't speak for any other state.

[–]comments 2 insightful - 1 fun2 insightful - 0 fun3 insightful - 1 fun -  (1 child)

I feel bad for taking time away from your helping your kids. There literally isn't anything more important in the whole world and you can tell them the internet person said so too.

Thanks for the followup, it doesn't surprise me, and I do think it's into the territory of saying it's an acceptable solution to just let the elderly just die whether they want to or not, which, ... is not ok. Your alternative solution ideas are interesting, and I've been wishing we'd done a lot more stuff too (I wanted to try to get local philanthropists to provide hand sanitizer at public transit stations, but I didn't manage to make it happen). I believe there is still LOTS of room for private actors to make needed solutions happen.

The spin you put on your story notwithstanding, it is an interesting case to know about, so I'm grateful that you chose to share it. (Though honestly I do still remain skeptical that it's real.) I'm sorry if these comments have taken up too much of your time and attention, and I hope going forward it's easy enough for you to share stuff without it taking more of your time than you'd like.

[–]coffee_addict[S] 2 insightful - 1 fun2 insightful - 0 fun3 insightful - 1 fun -  (0 children)

I am real. :)

My goal was never to change anyone's mind, it was just to start a conversation to get us all thinking more strategically about the bigger picture. And you and I are probably both thinking more strategically as a result of our intellectually stimulating conversation. I confess that my view is myopic because I am in the middle of it. It's great that we can agree to disagree on points and still talk about how to make the world a better place re: the things we agree on.

We do have something in common! We were both pushing for practical solutions for virus control and we both failed. I was trying to get hand washing stations set up around my community, like at the bus stops. They are only $100 each, so I figured we could GoFundMe and set up as many stations as we raised money for. I ran into several roadblocks and no one was willing to join forced to help me get them set up. Since homeschool takes up most of my time, I didn't have the time/energy to keep pushing for them.