End Game - some thoughts

[Mediasmart]

I started symptons 5 months ago and am now in an ALS clinic at Columbia Presbyterian. Good place. Good docs.

I've read a lot about the "end game" issues. I'm fully aware that then last few months are a pisser to say the least. I'm not in denial but my feeling is that the end stages for anything terminal are pretty bad all the way around so I don't feel I'm different than having any other disease..in fact better off as there is no treatment however slim so there are no false hopes.

Most of the time i feel that I have lived my life and am quite prepared. I don't want heroics. I don't even want to be prolonged and live in some sort of state that right now I don't want.

Is this weird? Am I in denial? Am I alone in feeling this way?

 

[BK2011]

I do not think it's weird. You feel the way you feel. And ALS affects everyone differently, physically and emotionally. Some diseases have painful endings, some are not so bad, but bad can be a relative thing.

I spent 24 years in the armed forces and made my peace with God a long time ago, the thought of dying doesn't bother me a bit. Pain I can endure. Being alive and "locked in" scares the hell out of me and keeps me up at night. I would agree totally with you, I don't want my life prolonged but I understand when someone younger or with younger children might fight for more time. I had a cousin survive seven years with ALS; he opted for a trach, couldn't move except for his eyes, had full time nurse, house keepers, and worked right up to the end because he could work on the computer from home. He was miserable for most of that seven years and his daughter told me he had confided in her that he would not opt for the trach if he had to make the choice again. Another cousin died of ALS two years after symptoms and nine months after diagnosis. Her husband caught unbelievable flack from ER Docks who pushed him to have her trached when she was admitted in respiratory distress. They wanted to save her life, he wanted her anxiety mediated not extend her life, per her wishes. Hearing about that fact just last week, I had a discussion with my daughters about supporting their mother in not traching me when the time comes. I also have a DNR order on file with my local VA hospital and a DNR note on my cell phone ICE (In Case of Emergency). Sounds like a long version of how you feel.

Good luck.

BK

 

[pearshoot]

almost 4 years since diagnosed. still walk, talk, eat, breath on my own. refuse to cut in stone what I will or will not do until time comes.

BK2011 I am also retired military Dec/1951-May/1973