Last weeks

[Tomswife]

i am suggesting that the forum have some reliable, vetted resources to help members with questions about end of life. So when members need advice, point them elsewhere. It should not be the focus or role of this forum. Ie. Thats not what we're all about.

I dont think it should be the role of this forum to suggest how to end your life (as was done recently by a moderator). This forum is not and should not try to be the universe of information on any and every topic. And, the forum is not being negligent if it avoids this topic (how to end life). People can seek advice elsewhere on any topic outside the bounds of this forum. It would be best for the forum to define its role as helping people live well with ALS. Live in comfort. Perservere with dignity. Try to enjoy a few moments each day, enjoy all the moments in a day. The mission of the forum should be about LIFE with ALS.

Form a referral to another resource, and focus on Life.

 

[Nikki J]

Regarding the comment you made elsewhere about different answers when you asked about feeding tubes and Marie did. They were different questions. You asked about waiting. Tom had not refused one forever. Marie’s dh has. It is his right and it led the discussion to a different focus

Death is part of ALS Of course it is part of life in general. I think it is valid for people to talk about here We are going to have different beliefs and opinions based on our backgrounds experiences and belief system. We will completely disagree sometimes. No one needs to follow the opinion of another and they should not.

This is an internet forum. Our main goal is to provide support for PALS and CALS throughout their journey. We try to provide fact based information when we can but a lot of it is sharing and supporting. Supporting people who are choosing an end has been something we have done. Our late moderator Karen ( KarennWendyn ) made such a choice Shel lived in Oregon and had a Death with Dignity option. We supported her though it broke my heart. Another dear member Nona lived in NH she had to do vsed with med support. We supported her too though equally heartbroken. There are others in the history of this forum who took these paths and others like a terminal wean from their vent. We supported and grieved

I never want PALS and their CALS to feel they have to take this step alone. We are here for the beginning , middle AND the end too

 

[Tomswife]

My PALS did not want a peg tube. I am sure I expressed it as waiting, because the clinic told us to do it 2 weeks after dx. He did not want one. The forum helped him get from no to yes.

I expected your answer as you expressed it. I did not expect you to agree with me. But I needed to present an alternative, since there are medical practices that specialize in end of life.

You all do admirable work. Its your forum To decide. You helped me greatly as well as I am sure you help others.

 

[Nikki J]

Only you know what was really happening in your house. We answered the question as you asked it about timing. Timing of feeding tube?
I am glad he changed his mind if he was a hard no. I hate that people don’t choose feeding tubes. But there are probably people who feel that way about my no trach choice

 

[KimT]

As a PALS, I’m grateful to hear all my options. When Karen chose death with dignity, I was heartbroken but I supported her choice. Now, as I progress, I am relieved that I have options on how to exit.

My brother died this week after a brutal battle with dementia. He was in
a VA nursing home and there was a Covid outbreak. My SIL decided on hospice and he died in peace.

I think the most important thing to do is support whatever choice the PALS makes and if the PALS cannot make a choice, we should support the CALS choice.

 

[lisa g]

I agree wholeheartedly as a PALS to options at the end of my journey. We all are well aware of how this ends and while others disagree with choices we have to end this peacefully and with dignity I'm thankful for the input on choices.

 

[lgelb]

Very sorry to hear about your brother, Kim. It was a long road for him.

 

[MupstateNY]

Kim, also sorry to hear it, it wounds like you've hada a one-two punch with your progression and pain increase.

Me, I'm planning to go out with morphine drops.

I understand that some have strong and a variety of views about end of life. maybe it would help to create a subforum for end of life topics, and then some can avoid visiting it.

 

[KimT]

Thanks Laurie and Upstate,

It was indeed a long road for him. The pandemic kept us apart when he could still function. He didn't want to expose me. My SIL came over yesterday and we had a huge meal. I wrote his obituary then I thought I should write my own. I don't want to list degrees, books, certifications. I want to list my philosophy on life, love, and death. Here's a picture of us. We were 19 years apart. I''m the one with the atrophied hand LOL. Actually, when I was first diagnosed I told my brother we were having a race to the grave. We both have a pretty warped sense of humor. Even in his dementia, he would laugh at my jokes.

 

[MupstateNY]

philosophy is good, but please also throw in the degrees and publications, which can be listed succinctly, therefore not much additional expense.

my mother dictated her obituary to me a week before she died.

 

[Allie1987]

What a sweet picture!