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KimT

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I am not sure if this is the place to put this- Mods, feel free to move. But this was posted elsewhere, and does touch on the tremendous financial burden at home ALS care can be, and may be a huge part of why people make the decisions they do- not only for themselves, but for what they perceive is in the best interests of their families. As this is activism for "at home" care and easing of the attendant financial burdens, I hope this is the best place to put it.

https://www.change.org/p/create-a-national-home-health-respite-care-grant-program-for-people-living-with-als
Yes! I've signed the petition. Catherine has worked tirelessly in advocating for us.
 

Dave K

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You'll be happy to know the petition is gaining traction. I met briefly last night with Barbara Newhouse and will soon be giving a presentation to the ALSA national leadership on this topic. I do believe this is finally becoming a priority for them, but they still need to keep hearing from PALS and CALS on this until it becomes an official advocacy priority for them. In the meantime, those who have energy for activism regarding aid in dying--no matter which side you're on--you should be including palliative medical education--and PALS home care needs in particular--to your activist agenda.
 

KimT

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The petition has over 2,000 signatures and more each hour. It is circulating on Facebook. Please have everyone you know sign it.
 

Dave K

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In addition to the petition, you can send an email directly to the ALS Association president at [email protected]

This is what to say:

Dear Ms. Newhouse, Please make home health care an advocacy priority.

That is all you need to say, but if you want to add anything, you can also describe a situation where a PALS is suffering from lack of adequate care at home, or has been warehoused in a facility away from home.
 

affected

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Dave thank you for that link to a thread some years back. I followed it and then on to the following youtube that I have just watched.

I have been a long-time Terry Pratchett fan, loving his discworld books. This documentary is very insightful and beautifully done IMHO tho others may disagree of course. Even though he put so much into investigating the right to die, he chose not to take the dignitas road and died at home some years later. I found that to be part of the really powerful message about choice.

I am not arguing with anything you have said, just putting this forward in the entire discussion.

I'm not sure what is so frightening about death personally. Life is a terminal illness, ALS is an accelerant - this is something I remember reading here years ago, I'm afraid I forget the original quoter of this. I found it interesting in the documentary that often if was the people being left behind that were the most upset or fearful about the whole thing, not the person making the choice.


http://dai.ly/xnu340
 
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