Compassion and Choices in ALS

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Jrzygrl

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I'll be thinking of you tonight, Lenore! Thank you!
 

Lkaibel

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Not a fan of the term “Death with Dignity” as it implies other choices are not “dignified”. Yes, the most common term in the U.S. today is Medical Aid in Dying.
 

JimInVA

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Well done, Lenore! Very well done!!
 

lisa g

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Thank you Lenore, for sharing. The webinar was informative and well done. I plan on rewatching it. I have so many questions that weren't touched on so I plan on contacting the organization with them.
 

Lkaibel

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Thanks all.
You can go directly to the Compassion and Choices website and the recorded webinar will be on the site in their webinars section by the 14th. The Facebook page for the org will also have the recorded webcast.
 

Bestfriends14

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I knew I'd forget about it. Ugh, CALS brain. I got a 15 minute nap in and then had to rush about getting dinner. Glad it's recorded so I can have a listen.
 

affected

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Lenore you spoke so clearly and from the heart, but strongly. I just can't thank you enough for being willing to discuss such a personal journey. I have shared that post to every ALS group I run or am involved with. THANK YOU
 

Lkaibel

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Thank you Tillie. Brian would love knowing this could help others.
 

Vincent

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While I understand the the thought of taking yourself out as a thing in ALS.. The thing I don't agree with is involving others in the process. Discuss it with loved ones absolutely. But to involve others in the actual process of being killed, is to place an unfair burden on all involved. Even people who are pro Death Penalty who work in prisons doing the executions are badly damaged by the process. If you really want to die, do it yourself, don't add to someone else's burden. You may have to speed up plans, but do it yourself.

Vincent
 

KevinM

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I think the example of trauma experienced by strangers working on the Green Mile that witness an execution is a poor comparison to a planned death among loving family members. Close family members almost always want to be present for a loved ones deaths, whether it be in a hospital, at home dying a “natural” death, or planning a peaceful death outside of the medical world. Death of a loved one in any setting is traumatic. Period.

I have planned a peaceful end game that doesn’t depend on hospice, doctor approvals, or the like, and both my wife and daughter want to be there to kiss me one last time, tell funny stories, listen to my favorite songs, and say their farewells. I’m nowhere near that point and my plans might very well change, but so long as the method is not violent (shotgun to the head, anyone?), being present has always been their wish.

Of course they would not be participating in any way, but our family would be together for my big sleep. I don’t see that as a bad thing. In my case they would not be actively “involved,” although several end of life stories here that did involve medical prescriptions had family participation in administering the medication.

Will my family experience trauma watching me breathe my last breath? Of course, but for many of us the daily trauma they would experience of carrying this no-win disease to the brutal end far exceeds the trauma of watching me take my last breath, in a loving environment, at the time of my choosing. Kevin
 
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lisa g

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I agree Kevin, anyone's family members will experience trauma watching a loved one pass away. I feel it needs to be viewed as a fact of life and while none of us like to think about our mortality we all face it and unfortunately with this disease it's always upfront and a present reality.

I have always told my husband and family that it will be my decision how this journey goes. When I say I've had enough they need to respect my wishes.

I have been actively writing and calling state representatives to entertain the prospect of Death with Dignity during legislation. Unfortunately it's been shelved and I never get a concrete answer to where they stand on the issue. So I continue to make a pain of myself and every couple of months I continue to contact them by email and sending a letter to insure they understand my position.
 

Clearwater AL

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Lisa, a few words why it always gets shelved. Religion, religious right, evangelicals,
churches and finally the last word… votes.

The strangle hold organized religion, all of them, (campaign contributions)
has over politicians, who fear to lose a single vote, in horrifying fear of
not getting re-elected.

I’ve often said working in Washington DC or a State Capital must be more
additive than heroin. Even to pledge themselves to someone who was the
worst person to hold the highest office. But… big lies and conspiracy theories
are OK to all mentioned above rather than supporting Death with Dignity
or Compassion and Choices.

Real life issues... for so so many. Us.

But… there’s no money $$$ in it for them. When I've had enough I want out...
hopefully some way.
 
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affected

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Not all PALS have the ability to 'end their own life'.
I nursed my husband palliatively, alone, during his last 4 days when we both knew he was actively dying.
As per his wishes, we did not seek medical intervention, he stopped all intake, and we titrated his meds with twice daily advice/support from palliative care by phone.
It was peaceful, it was dignified and it has given me lasting peace.
It is not what all CALS can do however. What we did is not the same as we could have done if we had laws available to make a choice of time and day. But my Chris still had his choice. And that is what we are talking about - choice. Definitely what one PALS and their family might feel is the right choice for them, is not for another. But if all have the right to choose, then they can choose a path like this or not. No one should feel guilty for making their own choice.

I really do not like this being compared to suicide or the death penalty, I feel that is a misunderstanding and gives quite ominous connotations to something very compassionate.
 

Lkaibel

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All I can say is that there is absolutely no other place I would rather have been than with Brian in his last days. I do not see any comparison whatsoever to witnessing an execution and being with a loved one in a peaceful end. One is inflicted, the other is self directed and non violent.
 
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