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Little girl denied transplant because of mental disability

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Re: Little girl denied transplant because of mental disability

  • I have told my father and H that I want to be cremated and sprinkled over the edge of the Golden Gate Bridge.  My dad said that he hopes he dies way before me, and H started getting upset at the idea of me dying.  Men are such big babies sometimes.  I'm not planning on dying anytime soon, I just want them to know in case I kick the bucket that I don't want to be buried.
  • Chelse, to answer your OP: 

    This issue is near and dear to my heart. I have a genetic condition that would most likely prevent me from receiving an organ donation. I know for a fact that my heart, lungs, and liver would not pass the test to able to be donated, but I'm still an organ donor. I would hope they could make use of my corneas, skin, whatever. I understand the standards. I'm grateful for the standards. Honestly, I know that my life will be much shorter than the average persons, and I don't think I would want an organ that I knew could to someone who might live longer and not be plagued with surgeries, experimental treatments, etc.  I wouldn't want to add 175 pills a week to my already medicine/treatment filled life. That doesn't make it less emotional or any easier, though.
  • If family is present, I think the hospital staff still asks about organ donation regardless of the sticker on the driver's license.  Or at least that's the case in CA.
  • LP11509LP11509 member
    1000 Comments Fourth Anniversary Combo Breaker
    edited January 2012
    In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/wedding-boards_etiquette_little-girl-denied-transplant-because-of-mental-disability?plckFindPostKey=Cat:Wedding%20BoardsForum:9Discussion:97ace936-0e90-4bd7-be01-7f39f1d54593Post:8f9fff02-1391-4c5e-96e6-ef4f5a1f4b01">Re: Little girl denied transplant because of mental disability</a>:
    [QUOTE]In Response to Re: Little girl denied transplant because of mental disability : In all the group homes that I've worked in, only some people are trained to give medication (CNA/CMA/MA), not everyone.
    Posted by dumdumfroggie[/QUOTE]

    <div>The group homes under the agency I worked for previously (I was in a different program but had overlapping clients) didn't  have anyone certified to give medications.  They got around it on a technicality - they didn't "give" the clients medication, they only "helped" the client count their meds and then watched them actually take it themselves. Or so they said. But that agency is an unethical shiitshow, so there's that. </div><div>
    </div><div>Edit: to clarify, the staff said that they only monitor, not give, but in reality I suspect that they actually did administer medication without certification.  And then claim they were just monitoring.  I do realize that there is a difference between administering and monitoring.</div>
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  • I'm an organ donor. I don't see any reason not to be, aside from personal and/or religious beliefs.

    And I totally want to be cremated. There's something about being buried that I just dont like.

    My dad says that when he dies he wants "I knew this would happen" on his gravestone because he wants to make people laugh even after he's dead.

    Whatever, pop.
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  • I think in CT now you automatically get the organ donor heart on your DL, you have to request to NOT have it. The old liscense you had to request it on your DL and sign it with a witness.
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  • In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/wedding-boards_etiquette_little-girl-denied-transplant-because-of-mental-disability?plckFindPostKey=Cat:Wedding%20BoardsForum:9Discussion:97ace936-0e90-4bd7-be01-7f39f1d54593Post:a8e79586-92a5-4a76-a3b7-60787c3e760b">Re: Little girl denied transplant because of mental disability</a>:
    [QUOTE]In Response to Re: Little girl denied transplant because of mental disability : The group homes under the agency I worked for previously (I was in a different program but had overlapping clients) didn't  have anyone certified to give medications.  They got around it on a technicality - they didn't "give" the clients medication, they only "helped" the client count their meds and then watched them actually take it themselves. Or so they said. But that agency is an unethical shiitshow, so there's that.  Edit: to clarify, the staff said that they only monitor, not give, but in reality I suspect that they actually did administer medication without certification.  And then claim they were just monitoring.  I do realize that there is a difference between administering and monitoring.
    Posted by LP11509[/QUOTE]

    If they DID do that, that's just stupid on their part, because administering medication is sort of stressful and a lot more work than observing self-administration, so I don't knwo why anyone would want to do that!  (I'm not saying I disagree with you, just saying that if that's what they did, then that's really dumb.)

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  • I just asked H what he wanted when he was dead and he said "Whatever's closest to being shot out of a cannon."  Awesome.
  • I think burying people is just a waste of space. I'm not really sure I'd like to be cremated either, though. Maybe if my ashes were scattered somewhere. I don't just want to be hanging out on someone's mantle. 
  • LP11509LP11509 member
    1000 Comments Fourth Anniversary Combo Breaker
    edited January 2012
    In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/wedding-boards_etiquette_little-girl-denied-transplant-because-of-mental-disability?plckFindPostKey=Cat:Wedding%20BoardsForum:9Discussion:97ace936-0e90-4bd7-be01-7f39f1d54593Post:3d4923fb-0713-4cb1-a705-79c42aef7dbe">Re: Little girl denied transplant because of mental disability</a>:
    [QUOTE]In Response to Re: Little girl denied transplant because of mental disability : If they DID do that, that's just stupid on their part, because administering medication is sort of stressful and a lot more work than observing self-administration, so I don't knwo why anyone would want to do that!  (I'm not saying I disagree with you, just saying that if that's what they did, then that's really dumb.)
    Posted by J&K10910[/QUOTE]

    <div>Oh, it is definitely dumb.  I'm 99% certain that the group home supervisor forced them to do it because they didn't want to pay for someone certified to come twice a day and/or pay for staff to become certified.  So they just lie.  But I couldn't prove it for sure.</div><div>
    </div>
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  • In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/wedding-boards_etiquette_little-girl-denied-transplant-because-of-mental-disability?plckFindPostKey=Cat:Wedding%20BoardsForum:9Discussion:97ace936-0e90-4bd7-be01-7f39f1d54593Post:d391937e-1118-4139-9778-06ab2f3c76bf">Re: Little girl denied transplant because of mental disability</a>:
    [QUOTE]I think burying people is just a waste of space. I'm not really sure I'd like to be cremated either, though. Maybe if my ashes were scattered somewhere. I don't just want to be hanging out on someone's mantle. 
    Posted by ErinG93[/QUOTE]
    Word.
  • In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/wedding-boards_etiquette_little-girl-denied-transplant-because-of-mental-disability?plckFindPostKey=Cat:Wedding%20BoardsForum:9Discussion:97ace936-0e90-4bd7-be01-7f39f1d54593Post:1afc7f57-56a3-4bf7-a701-878c7222b97a">Re: Little girl denied transplant because of mental disability</a>:
    [QUOTE]My mother wants to be cremated, with half her ashes on my mantle, and half on my sister's mantle, so she can contiue to be a burden to us after her death, since we'd have to dust around her.  She's a strange woman.
    Posted by Holly4212011[/QUOTE]

    My mom said something similar to that to me and I just laughed.  She asked what was so funny, and I said "The fact that you assume I'd dust the mantle!"

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  • In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/wedding-boards_etiquette_little-girl-denied-transplant-because-of-mental-disability?plckFindPostKey=Cat:Wedding%20BoardsForum:9Discussion:97ace936-0e90-4bd7-be01-7f39f1d54593Post:1afc7f57-56a3-4bf7-a701-878c7222b97a">Re: Little girl denied transplant because of mental disability</a>:
    [QUOTE]My mother wants to be cremated, with half her ashes on my mantle, and half on my sister's mantle, so she can contiue to be a burden to us after her death, since we'd have to dust around her.  She's a strange woman.
    Posted by Holly4212011[/QUOTE]

    <div>:snort:</div>
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  • In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/wedding-boards_etiquette_little-girl-denied-transplant-because-of-mental-disability?plckFindPostKey=Cat:Wedding BoardsForum:9Discussion:97ace936-0e90-4bd7-be01-7f39f1d54593Post:d391937e-1118-4139-9778-06ab2f3c76bf">Re: Little girl denied transplant because of mental disability</a>:
    [QUOTE]I think burying people is just a waste of space. I'm not really sure I'd like to be cremated either, though. Maybe if my ashes were scattered somewhere. I don't just want to be hanging out on someone's mantle. 
    Posted by ErinG93[/QUOTE]

    There's always the option of being in one of those crypts/burial vaults.  Once you've decomposed they push your remains to the back and the next family member goes in.
  • H wants to be buried, but instead of a tombstone, he wants a parking meter with the "time expired" tag flipped up.

    Then again, he hopes that by the time he dies, people will be launching ashes into space. He prefers that option.
  • Off OP topic- did anyone see the episode of My Strange Addiction where the woman WAS EATING her dead H's ashes? I was really shocked by that. I can understand rocks and soap, but your H?
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  • My dad has told me he wants to be eaten by a bear. His reasoning is that he has been to too many wellness checks and found the person dead on the toilet. He wants an interesting story. 
  • In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/wedding-boards_etiquette_little-girl-denied-transplant-because-of-mental-disability?plckFindPostKey=Cat:Wedding%20BoardsForum:9Discussion:97ace936-0e90-4bd7-be01-7f39f1d54593Post:f236021d-e72d-4fc1-b8f4-b1b3bbaea68d">Re: Little girl denied transplant because of mental disability</a>:
    [QUOTE]Off OP topic- did anyone see the episode of My Strange Addiction where the woman WAS EATING her dead H's ashes? I was really shocked by that. I can understand rocks and soap, but your H?
    Posted by Nickivegan[/QUOTE]<div>
    </div><div>That makes me sick.

    </div>
  • This cremation talk reminds me of the horrific family reunion I went to several years ago.  It was my mom's step-dad's family, so I'm thankfully not blood-related to these people.  But yeah, my (step) grandpa's parents were both cremated and sat on his brother's mantle for more than 20 years.  This was the weekend they were going to scatter the ashes in the forest in Oregon.  My grandpa's brother emptied the ashes in a bucket and mixed them together with his hands, then threw them all over the place.

    Probably one of the more awkward moments of my life.
    panther
  • Was that the place with the scary bathroom, AATB?
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  • In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/wedding-boards_etiquette_little-girl-denied-transplant-because-of-mental-disability?plckFindPostKey=Cat:Wedding%20BoardsForum:9Discussion:97ace936-0e90-4bd7-be01-7f39f1d54593Post:61764f7a-5b77-4e0a-a014-b74be7a0b7d7">Re: Little girl denied transplant because of mental disability</a>:
    [QUOTE]Was that the place with the scary bathroom, AATB?
    Posted by adamar15[/QUOTE]


    That's the one.

    Scary bathroom, scary everything.  And everyone was high.
    panther
  • In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/wedding-boards_etiquette_little-girl-denied-transplant-because-of-mental-disability?plckFindPostKey=Cat:Wedding%20BoardsForum:9Discussion:97ace936-0e90-4bd7-be01-7f39f1d54593Post:f236021d-e72d-4fc1-b8f4-b1b3bbaea68d">Re: Little girl denied transplant because of mental disability</a>:
    [QUOTE]Off OP topic- did anyone see the episode of My Strange Addiction where the woman WAS EATING her dead H's ashes? I was really shocked by that. I can understand rocks and soap, but your H?
    Posted by Nickivegan[/QUOTE]

    <div>I started thinking about that as soon as people mentioned wanting to be cremated.  I gagged through that whole episode. </div>
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  • I am slightl skeptical that this is how it truly went down, because a) it's written by the parents, and b) the doctors use the words "mentally retarded". I don't know a doctor anywhere that would call a child "mentally retarded". That's a very out of date term, and I hope that this isn't 100% real. I understand the difficulties of dealing with a child who has so many health issues, I've been one of them, but at the same time, when it's the parents, looking through a clear lens is almost impossible.
  • FWIW, and I know I'm late to the conversation, but situations like this are the reason my mom (a registered nurse) advises seriously ill patients to bring someone less emotionally involved to the doctor.  The mother in this scenario admitted that she wasn't hearing the doctor's initial explanations, nor reading the full details.  It's perfectly natural to be in a fog, and for things to blur when you're this emotionally involved, but it does mean she likely has only grasped the details she was predisposed to fix on.  The very passion that is useful when she advocates for her child in other situations can make this situation worse.  If the doctor really was "warned" about her level of involvement, it suggests this problem has cropped up with other staff before.

    As far as med distribution...my FFIL spent a few weeks convalescing in a nursing home after an extended hospital stay once.  Like many such facilities, they were chronically understaffed and under funded.  I saw the quality of care there, and they could not have been trusted to distribute a complex array of medication on a complex timetable with any precision.  There wouldn't be malice involved, or lack of training, just apathy and overwork.  Think that's bad?   The local psych home was actually shut down by the state this summer for noncompliance.  There are legitimate reasons for requiring that the recipient of a donor organ be able to self-administer.
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  • MeghannsixMeghannsix member
    500 Comments Second Anniversary 5 Love Its
    edited January 2012
    In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/wedding-boards_etiquette_little-girl-denied-transplant-because-of-mental-disability?plckFindPostKey=Cat:Wedding%20BoardsForum:9Discussion:97ace936-0e90-4bd7-be01-7f39f1d54593Post:ba88089f-0d29-43b0-8526-5e7d26c218e4">Re: Little girl denied transplant because of mental disability</a>:
    [QUOTE]Let this just be a reminder that we should all be organ donors. Don't forget to tell your nearest and dearest, in case they are confronted with one of the most horrible questions we can face.
    Posted by Elinetrouwt[/QUOTE]

    I know this really got to a lot of you girls, but I think maybe what she was trying to say was, please consider becoming an organ donor, and if you are, please make sure your family knows it.  If more people were donors and organs were more available, maybe doctors wouldn't have to be so particular about who got them.

    edit- late to respond, which is usually why I just stick to lurking, had no idea you guys were already on to cremation
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  • In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/wedding-boards_etiquette_little-girl-denied-transplant-because-of-mental-disability?plckFindPostKey=Cat:Wedding%20BoardsForum:9Discussion:97ace936-0e90-4bd7-be01-7f39f1d54593Post:fa260f29-952a-47bd-ac42-3db016f3c076">Re: Little girl denied transplant because of mental disability</a>:
    [QUOTE]To the point about doctor's not doing what they can to save you if you're an organ donor- I was reading a blog post about a woman who was hit and killed in a car accident. She was crossing the street in front of a school and was run into. They got her to the hospital and initially declared her brain dead. She was an organ donor. They waited a prescribed amount of time and began to see sinus rhythm, so they ran further tests and did what they could to bring her back. In the end, she died and donated her organs, but I think the doctors truly did everything they could to bring her back. I would certainly hope this is always the case with any person, regardless of of any outside choices.
    Posted by nhahn2206[/QUOTE]

    Two words: hippocratic oath

    [QUOTE]I have on my license to be an organ donor.  But don't they not go off of that?  Do they ask next of kin or something if they would like the deceased person's organs donated?  I might be off base on that one, but I thought that was how it went.  In any event, I will make sure anyone who will be around when I die, will know that I want to donate.
    Posted by crfb87[/QUOTE]

    Yes, they still ask next of kin. Or at least, next of kin can stop them from harvesting your organs. H and I both have "organ donor" on our licenses, but we each know that's what the other wants, too, in case something happens.

    I wish that being an organ donor was the default and that you had to opt OUT if you wanted to, rather than opting in.
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  • Oh, and FWIW, a family member wanted to donate the organ, but you would still not be a good candidate if you have an illness which will cause the organ to break down within a few years anyway (like whatever is causing your organ failure would be an on-going issue) as well as a myriad of other things (possibly chemo or AIDS, etc) that can really affect quality of life. Not to mention the risks of surgery.
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  • edited January 2012
    In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/wedding-boards_etiquette_little-girl-denied-transplant-because-of-mental-disability?plckFindPostKey=Cat:Wedding%20BoardsForum:9Discussion:97ace936-0e90-4bd7-be01-7f39f1d54593Post:da38250b-b21b-4269-a7fe-1e4b34f4cbdd">Re: Little girl denied transplant because of mental disability</a>:
    [QUOTE]My father has two very specific requirements for us when he dies: 1. Tell the transplant team to harvest whatever they can. He's not going to need it, but someone else does. 2. Bury him in the cheapest casket available. If cardboard is an option, do it. He'll be dead, and he doesn't want us wasting money on something that's going to rot.
    Posted by specialk84[/QUOTE]

    <div>This is pretty much the same thing I told my fiance if something were to happen. I don't think he appreciated it. </div>
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