Would you vent

[MaxEidswick]

There has been a lot of chatter about quality vs. quantity, getting locked in, CALS experiences with the end time, etc.

 

[bigmark1954]

This is a difficult question to get concrete answers on. Right now, I would consider a vent.......but when the time comes, my quality of life might be such that I will not.

 

[Diane H]

Nearly everyone says "no vent" at first, well before a decision has to be made. And no one really knows until the moment when the doctor says "Vent or die? You have to decide now."

 

[tinyandme]

How about the option for CAL: no, I would not vent and I'm glad my PAL did not either. I'm very very grateful Hayden spared us both

 

[Atsugi]

Nearly everyone says "no vent" at first, well before a decision has to be made. And no one really knows until the moment when the doctor says "Vent or die? You have to decide now."

I respect your perspective and so I ask you this question.
This a serious inquiry, not a stance on the subject.

Since we all die, isn't the real question "Die soon or die later (after the disease has progressed more)"?

--Mike

 

[pecas]

I fully realize that no one knows how they will really feel until the moment comes. But right now, I think I probably will not. It's partially about me. I read Diane's attic post on her blog, which made a huge impression on me. It's partially about my husband. I read a journal post by Barbie, I think, that also made a big impression. Those two perspectives have really stuck with me. I don't think I want to do that to myself or my husband.

 

[nebrhahe53]

Originally Posted by Diane H View Post
Nearly everyone says "no vent" at first, well before a decision has to be made. And no one really knows until the moment when the doctor says "Vent or die? You have to decide now."

I know now Diane-I respect you and am happy you chose a way which worked for you, but I would never put myself or my family through the hell I have read on these pages-if there were even a slight chance of that happening-and I think there is more than a slight chance if I vent.

 

[Diane H]

I respect your perspective and so I ask you this question.
This a serious inquiry, not a stance on the subject.

Since we all die, isn't the real question "Die soon or die later (after the disease has progressed more)"?

--Mike

Mike, that is exactly the question we have to ask. For someone with fairly slow progression who has found that his or her quality of life is still acceptible, there is still good time to be had before they are ready to call it quits. With rapid progression there is usually little time between a vent and pretty much locked in. ALS is not only cruel but fickle as well.

 

[patrick123]

The cost of care when venting is tremendous. If I could afford it I would. The reality is I might not be able to do it. Because of financial considerations kinda sucks.
Patrick

 

[skipper66]

My dad will turn 80 this Thursday and even if he were even 30 years younger his answer to a vent would be a absolute hands down No! If he were younger who would have definitely agreed to a feeding tube. But, he doesn't want one now.
I am 48 and if I had ALS I myself would definitely say No, to the vent. But, I would agree to having a feeding tube. I also would definitely be willing to use a bi-pap.

 

[Texas Quilter]

I think about this often. If I had to make the decision tomorrow - maybe. My husband is 77 & I am 62. That will make a big difference in my/our decision. He is very healthy & strong, but he IS 77 and has just been diagnosed with early macular degeneration. My only other family member here is my sister & she has a number of health issues & would not be able to care for me. I have a daughter in Florida who works full-time. I have 3 stepsons & 1 stepdaughter in Pennsylvania - all of whom work (as do their spouses). Heck, even without the vent questions I still don't know what will happen to me if something happens to my husband. We start to have those conversations, but they don't seem to progress very far.
Dianne