NothingButLove
Distinguished member
- Joined
- Dec 25, 2016
- Messages
- 106
- Reason
- Lost a loved one
- Diagnosis
- 11/2016
- Country
- US
- State
- CA
- City
- Anaheim
I really, really wanted to be an active member on this forum. Around September of last year, my wife has wanted me by her side all the time. The depression, stress and physical fatigue brings me down. The lack of sleep just destroys me. I just couldn't find the time...
I've seen posts saying that as CALS, we must respect our PALS wishes regarding end of life. Up until this point, I've always treated any talk about my wife ending her life as a sign I need to up my game. I've been with my wife 26 years and I know when my wife is serious or just depressed. The problem is, I'm pretty sure she's serious now. I've tried all my tricks to change her mind. Finally, I brought up her mom's 80th birthday. She looked distressed as she shook her head "no". I asked her if it upset her when I tried to convince her to stick around. She said "yes" and started crying. I then asked her if at any time she was close to changing her mind. She said "no".
My wife has progressed so much since December. At that point, she had already lost both legs, her right arm, her speech and she could only eat using the feeding tube. During mid December, we had to start using the cough assist machine. Her saliva got so out of control, we couldn't go anywhere. We got that under control with Glycopyrrolate. In March, she lost her left arm. The difference between being able to use one hand and forearm versus being fully quadriplegic is huge. Then the bowel problems started. She can't go now without an enema and needs to wear a diaper all the time. As of mid April, she has needed the vent. She's had it since August first of last year and never used it except for a couple of weeks. And finally, this week her tongue turned white with thrush. Hey, why not...
The real deal breaker is the pain. Her feet, back and butt keep her pain at level 10 (according to her). She's on morphine now which brings it down. I just got to laugh when I see an article that says pain isn't usually associated with ALS. How did we get so unlucky?
As it stands right now, my wife wants to refuse food and water through her tube after the Roland Garros French Open which ends June 10th. That means I have 10 full days left. I don't care how many posts I read about how starving to death isn't as bad as it sounds. I'm horrified.
At a recent doctor visit, I told my doctor that I can't give up. It's just not in my nature. He said you can't look at it as giving up. You have to look at it like the suffering of a loved one is being relieved. That's a tough pill for me to swallow.
Rob
I've seen posts saying that as CALS, we must respect our PALS wishes regarding end of life. Up until this point, I've always treated any talk about my wife ending her life as a sign I need to up my game. I've been with my wife 26 years and I know when my wife is serious or just depressed. The problem is, I'm pretty sure she's serious now. I've tried all my tricks to change her mind. Finally, I brought up her mom's 80th birthday. She looked distressed as she shook her head "no". I asked her if it upset her when I tried to convince her to stick around. She said "yes" and started crying. I then asked her if at any time she was close to changing her mind. She said "no".
My wife has progressed so much since December. At that point, she had already lost both legs, her right arm, her speech and she could only eat using the feeding tube. During mid December, we had to start using the cough assist machine. Her saliva got so out of control, we couldn't go anywhere. We got that under control with Glycopyrrolate. In March, she lost her left arm. The difference between being able to use one hand and forearm versus being fully quadriplegic is huge. Then the bowel problems started. She can't go now without an enema and needs to wear a diaper all the time. As of mid April, she has needed the vent. She's had it since August first of last year and never used it except for a couple of weeks. And finally, this week her tongue turned white with thrush. Hey, why not...
The real deal breaker is the pain. Her feet, back and butt keep her pain at level 10 (according to her). She's on morphine now which brings it down. I just got to laugh when I see an article that says pain isn't usually associated with ALS. How did we get so unlucky?
As it stands right now, my wife wants to refuse food and water through her tube after the Roland Garros French Open which ends June 10th. That means I have 10 full days left. I don't care how many posts I read about how starving to death isn't as bad as it sounds. I'm horrified.
At a recent doctor visit, I told my doctor that I can't give up. It's just not in my nature. He said you can't look at it as giving up. You have to look at it like the suffering of a loved one is being relieved. That's a tough pill for me to swallow.
Rob