“End Of Life Decision” Chapter 121
“When do want to die?" That’s one hell of a question to be asked on this journey. How many people are asked that question?
In my very first post I wrote about some documents that everyone with ALS should consider when preparing for the future. One of those documents encouraged determining how far you wanted to go down this journey after diagnosis. When I was first asked, it felt like a punch to the gut. After shaking it off, I jumped right back up and pumped my fist in the air yelling "fight-fight-fight!" On that day, I made the decision to not let ALS win. Three years later and I feel the same today. Nobody questioned my decision, nor did anyone challenge it.
Deciding when to die is the most personal decision someone can make. Yeah, I know there are many other decisions we make that are very personal. Do you want surgery for x? Or do except a person to be married to? Heck, some might even say picking your favorite sports team is a personal decision. I get all of that.
There’s something I have noticed since my ALS diagnosis. Let's call it Rule Number 1: “David is always right!” Nobody wants to tell me when I'm wrong other than my immediate family. Nobody gives me negative reviews on my blog posts. Nobody says I can’t do something when I come up with a crazy idea. Ok, there was that one time when I wanted to modify my wheelchair to get more speed to jump over my son in law... but I digress.
Ultimately, I have decided that I want to live until the point when I am no longer mentally alert and/or need life support. I left it up to Laura to “pull the plug,“ so I better be nice. Some might argue that having a tracheostomy or a feeding tube might already constitute life support. However, in my case I don’t look at it that way! Some PALS like myself might say life support only includes invasive interventions, and others may define it differently. It’s personal.
Now I will tell you that the above Rule #1 never existed for me before the ALS diagnosis. You can ask my favorite work wife Denise. She would gladly tell me when I was wrong. Heck, she would tell me I was wrong even when I was right. However, even she follows Rule #1 now. Please note that I am not saying that everyone should jump on me all at once. I like Rule #1. I also believe that speaking to me the same as you would have before ALS is what I truly want. It's what any other PALS wants, too with exceptions.
This week, though, when a fellow PALS was verbally attacked about his end of life decision, I was pissed off. Again this is a personal decision that only the PALS can make. He/she may make it after speaking with loved ones, but someone saying negative comments on social media about their decision, is just wrong. In this regard, everyone should follow Rule #1.
I pray you won’t have to make this choice, but if you do, let it be yours.
Well I’ve been sitting all day and my feet hurt. Time for me to enforce Rule #1.
Love and Blessings
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We actually had a similar conversation this morning. Never would I have thought a year ago that we would ever have this conversation. Today I was urging my husband to document exactly what he wants so his wishes and directives are clear. I want no one, including myself in a panic not to lose him, to go against his wishes. This is a very personal decision.
I hate that this is a topic we have to discuss so I’m rating this post with a zero but I’m so proud of you for publicly tackling such a difficult topic and for that you get five stars!
*****
This is a very serious post, I know, but you still show us your sense of humor. 🙂Modern technology makes this very complicated. In the old days, the man upstairs would decide.
Tremendously courageous, candid, and caring blog Dave. We will all face this reality one day. as you reminded us earlier. Thankful for your friendship and personal example
You are blogging about something that's been on my mind lately: How will I know when my husband has had enough and is ready to give up the ship? He's already said twice that I should have let him die, but twice in 2-1/2 years doesn't constitute a rational request to pull the plug because both times were when he was feeling quite ill. That doesn't happen often. I would NEVER presume to question anyone else's decision about their personal end-of-life, and when my husband tells me he can't live like this anymore, I won't question his decision either.
In the meantime: Am I trying to keep him alive for himself or for me? Both options would be correct. I…
David, this is a deep blog post... the biggest of questions, no doubt... I can see how someone gets upset at the thought of someone deciding to make an end of life choice. I have to assume the upset comes at the thought if loosing someone they love... Tough question for sure. I'll stick to your Rule #1, and trust you along the way. Best, Greg