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I just wanted to say I understand your frustration Steele. My MIL just passed from ALS and for most of the progression lived in a state of denial of what would ultimately be the outcome of this horrific disease. She never got the PEG, although she did get a electric wheelchair when moving got difficult. But she never left the house after that, except for the 3 month check up appointments. She refused all care except from her elderly husband. And would lie about how she was being cared for, so we wouldn't have someone come in. - She said she was sleeping in her bed at night but we could see into her room (a makeshift bedroom made from curtains across the living room) that she never left her chair at night. As well as saying her husband did the required exercises with her legs, but they think it was a blood clot that ultimately stopped her heart. It's hard to live with knowing this is how things may go. But it was her choice. She was giving multiple options and opportunities to change how quickly her body was dying but she didn't want intervention. We could have fought for custody over her care given her state, but who wants a rift like that when you are watching someone die. And it is a death sentence at this point in time. We don't know how they are processing that info, but it's there and it's coming.

This isn't a message of hope, but a shoulder of understanding. I wish you all the love and support a fellow being can give during your struggle.

-Sam
 
As a compassionate human being, I am all for being positive.
As a CALS, I worked hard to do three things:
- First, whatever the PALS wanted, I would make it happen. I may disagree with my PALS--vehemently--but the PALS is a responsible adult, knows their mind and heart well, and has ALL their "skin in the game." It seems disrespectful and unethical to say, "You're depressed so you're not thinking right--I'm going to do what I know is best for you."

- Second, whatever the PALS would need in the future, I would plan for it and have it ready the moment my PALS said, "I really need this."

- Finally, I would plan and prepare for the needs of my surviving family. Although ALS was clearly going to destroy one life, I would make sure it did not destroy my future or the welfare of our children.
 
A few years back, Dudley Clendinen wrote a NY Times essay about living with ALS, his definition of what constituted a meaningful life, and his plans to end his life at a certain point. In the column, he wrote frankly not only about the disease but about his decision that, before he reached its final stages, he might kill himself. "No thank you," he wrote, "I hate being a drag. I don't think I'll stick around for the back half of Lou." He received thousands of responses from around the world, most of them supportive. NY Times columnist David Brooks was moved to not only applaud Clendinen’s decision, but to suggest that more “self-enclosed skin bags” should make early exits for the good of the economy. “t is hard to see us reducing health care inflation seriously unless people and their families are willing to do what Clendinen is doing — confront death and their obligations to the living.”

A publishing house offered Clendinen a book deal, “a really big offer,” Clendinen said. “I’ve been broke for 20 years, so the thought of actually being affluent for the last part of my life…is very appealing. I would love to pay my debts. I have considerable debts. It matters to me that I be able to pay them. It would matter to [my daughter] Whitney because she wouldn’t have such a messy estate to deal with.”

Regarding the option of a tracheotomy, Clendinen wrote, “I don’t want to. If I don’t, I might wink out this fall. If I do, then I could prolong it. It poses this kind of difficult personal, moral, and physical choice. Is a book worth posing this possibility of my needing to consent to a surgery that would cut a hole in my throat to insert tubes so that I could stay alive long enough to write the book? Which is not something I had planned to do. The answer at this point is—maybe.”

After much soul searching, Clendinen consented to a feeding tube and, in the end, passed away peacefully without taking steps to end his own life.

So let’s look at the social factors involved in this story:

- The responses from people of around the world supporting Clendinen’s announcement that he planned an early exit
- The columnist who called PALS “self-enclosed skin bags” who should make early exits for the good of the economy
- The cost of health care
- “Obligations to the living”
- The “messy estate” Clendinen’s daughter would have to deal with
- The publishers who thought Clendinen still had valuable contributions to make
- The arrival of money after being broke

Clendinen’s choices were his own to make, but he did not make them in a social vacuum. My applause goes to those who helped Clendinen see the possibility for making valuable contributions and doing something meaningful beyond a point when he previously thought that would be true.

As for those who wrote in support of Clendinen’s announcement that he planned an early exit, I will not express my view, as it will certainly provoke a negative response from certain forum moderators. In fact, this forum has become so unsavory when the value of human life is discussed, I have elected to stop visiting it. I will instead be devoting my time to educating ALSA executives and employees about health care rights of PALS so they can be better advocates for the home health care and durable medical equipment that PALS are too often denied in the present social environment.

In leaving, I would like to close with some words by E.E. Cummings:

i carry your heart with me(i carry it in
my heart)i am never without it(anywhere
i go you go,my dear;and whatever is done
by only me is your doing,my darling) i fear

no fate(for you are my fate,my sweet)i want
no world(for beautiful you are my world,my true)
and it’s you are whatever a moon has always meant
and whatever a sun will always sing is you

here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life;which grows
higher than soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart

i carry your heart(i carry it in my heart)
 
>>The columnist who called PALS “self-enclosed skin bags” who should make early exits for the good of the economy<<

That columnist is reprehensible, to refer to anyone as "skin bags"


>> In fact, this forum has become so unsavory when the value of human life is discussed, I have elected to stop visiting it..<<

I have never seen anything here other than pro-PALS choice, which is as it SHOULD BE.
I don't know that visiting this forum and working with the ALS society as you say needs to be mutually exclusive.
I certainly agree that more work needs to be done to ensure that no PALS feel like they have no other choice be it financially or perceived burden or otherwise.

But ultimately, it must be OUR CHOICE.

Liz
 
DaveK, your post on hospice back at the beginning of this year was very educational and instrumental in changing my view about hospice and I credit you with helping me make the choice to elect early hospice for my PALS.

However, when you wrote about this forum becoming "unsavory when the value of human life is discussed," I had to do a double take because I thought you were talking about a forum mentioned in the New York Times article or somewhere else. So I am shocked by your statement. I think we all value human life here and the loss of the life of our PALS has caused indescribable suffering to many of us former CALS, so it is not a subject we take lightly.
 
Dave K, I am sad to see you go but I understand why you feel the way you do. I wish you would reconsider as I think your contribution here has been invaluable on many fronts.
 
I am sorry Dave K left, but I must say I think back before this happened I may have leaned towards what I still feel is his judgemental view. I see things differently now.

As to Mr. Skin Bags, that's insane. Let's see how he feels about that should a wretched diagnosis ever befall him. No one has a duty to die- or to live beyond what works for them.
 
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