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Dawood

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From the first mention of ALS, I believed my wife would not want to live locked in, and it came as no surprise that when she prepared her advance directive, she wrote that she did not want anything done or omitted by her doctors or nurses with the intention of taking her life, but that she wanted me to end any life sustaining treatment if she ever became completely unable to communicate. She also wrote that she wanted all treatment terminated if two doctors determined that she was severely and irreversibly brain damaged.

I have also heard people say that if they had ALS, they would want someone to pull the plug before they became locked in.

But you never really know what is right and wrong until you have actually lived through it.

Last July, my wife, who is completely paralyzed except for her eyes and lips, started having some real trouble communicating, and we were concerned she was becoming locked in. She uses a ventilator for therapy at night but breaths on her own during daytime hours, so her only treatment that is "life-sustaining" is her feeding tube. I went through her advance directive with her and asked her to confirm that she wanted me to stop her tube feedings if she became locked in. She said "no." She asked me to change her advance directive so she would not be starved to death if she became locked in. Clearly it was not her idea of how to be kept comfortable. So one never knows how people will decide about things when it comes right down to it. (Interestingly, it also turned out that much of her difficulty communicating was being caused by malfunctioning eye sensors in her Tobii device.)

On December 18, my wife felt very tired all day, and in the evening she became completely unresponsive. Over the next several days, she occasionally opened her eyelids and/or moved her lips, but her gaze was fixed (doll's eyes) and she did not respond to anything in a way that suggested any cognition. On December 21 two neurologists examined her at home and diagnosed a central brain stem event (stroke) from which she was very unlikely to recover, and that she could not see, hear, or understand anything that was happening around her. They said she was permanently and severely brain damaged. Pursuant to her written instructions, we discontinued tube feedings, permanently disconnected the ventilator, and stopped all medication except for morphine. The doctors predicted she would last four days and would breathe her last on Christmas. Some observers hinted that my wife would not want to linger, suggesting that perhaps a larger dose of morphine was in order. But my wife had written in her advance directive that she did not want anything done or omitted with the intention of taking her life, so we were careful not to exceed the prescribed dosage.

Two days later, on December 23, my wife started responding to questions and said she was hungry and wanted to be put in her wheelchair. Her cognitive abilities were completely intact. We stopped making funeral arrangements and had a very, very nice Christmas celebration. Her doctors have no explanation for why my wife was unresponsive for almost six days and suddenly made a complete cognitive recovery. Again, it just goes to show you can never really know in life until you have actually gone through it.

Ever since the episode last December, my wife has been smiling quite a lot and has not seemed depressed. So for everyone who thinks that life with ALS isn't worth living, and that no one would ever want to live in a locked in state, and that pulling the plug or giving a lethal dose is the "right" or "brave" thing to do, you need to think again. You need to make very sure, as we did, that the patient's wishes are followed to the letter, and if you don't have clear written instructions, you should base your decisions on having a reverence for life.
 

Atsugi

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Wow. Very powerful. Thanks for that. And you're right; you never know.
 

DreamsEnd

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Well said, Dawood,
One doesn't know. And one can change their mind. You are doing as promised.

Sherry
 

vltsra

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Thank you for this post, Dawood. My husband has been diagnosed very early in the progression, and we'be had a few (very few...trying to focus on now) about his wishes. I have asked him not to put me in a position to make the decision for him, want him to have the very best in life.
 

Nuts

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Thank you for sharing this with us. What an incredible story. You are right--you never know.
 

Vincent

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Very powerful story. This is why I've always thought of advanced care to be more of a conversation than a statement. THe broad strokes like nothing done or omitted to hasten death are good to have in place. Things like the very end should be part of an ongoing conversation. If I might get another month, it would be kind of nice to hang around with my family and friends. I'll let you know when I'm done.
VIncent
 

scaredwifetx

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Thank you for sharing your story. It will help so many of us to always keep the communication open and to remember our PALS wishes. Those wishes may change as they progress. Your story is wonderful, full of hope, love and most importantly you made sure to follow her wishes. You saved her life and gave her more time with her loved ones. She will always know she is in very good and loving hands.
 

lgelb

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Dawood, we were doing OK until we got to your last sentence, which belongs in the religion thread especially as it is in command voice. So I moved the thread.

I would venture to say that most here consider minimizing suffering a key principle but "life at any cost" is more controversial, as it sometimes conflicts with the minimizing of suffering, and some of us therefore will respectfully disagree with your injunction.

Best,
Laurie
 

Dawood

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The religion thread? Why? I am not the slightest bit religious, and my post expressed no thoughts about religion, and I'm not comfortable being associated with religion.
 

Dawood

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Oh, I see. You have inferred that "base your decisions on having a reverence for life" means "life at any cost, even if it conflicts with the minimization of suffering," and you have stumbled from that illogical inference into the insupportable surmise that I am espousing a religious belief, and so you moved my post into a discussion group where the post does not belong. If I get religion, I'll let everyone know. In the meantime, please don't label my posts as religious. Thanks.
 

skipper66

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My dad was struggling really bad during his last hours until they got his morphine and ativan adjusted to the right level. I have much respect for life. But, there was no way I would have let my dad suffer anymore then he had too. If we had to use high doses of morphine then that was what we were going to do to keep him comfortable.
 

Atsugi

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< I deleted my post out of respect because I think the Religion forum is not the right place for non-religious persons to debate. >
 
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Margesmn

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Dawood-Thank you for sharing your story. I have just started to consider my options for my healthcare directive and I very much appreciate the insight.
 

pittsburghgal

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Thanks for posting this, Dawood. Not only as caregivers should we follow the patient's wishes, but the medical community should too.

My husband was hospitalized last June after sustaining bleeding in the brain from a fall. He was in the neurotrauma ICU in a large university hospital. Initially he was alert and when asked by the physician who was head of the ICU whether he would want CPR if necessary, my husband said "yes". He fairly quickly deteriorated and was responsive only to pain by the next day. The same physician asked me whether they should intubate him if it became necessary. Based on his wishes to have CPR if necessary, I said yes.

The following morning I walked into his room and could not believe what I saw. My husband was sitting upright in bed struggling with every muscle in his body trying to breathe with just a mask with oxygen over his face. I am in the medical field and realized that he was almost in respiratory arrest. I asked the nurse how long he had been like that and she said since she had started her shift about 6 hours before that. I was very angry and asked why I was not notified and why was he not intubated at this point.

The social worker took me aside into a small conference room and asked me if this was really what I wanted since he had ALS and had fallen and would probably fall again. She said that I knew life was going to be difficult for him because of the ALS. I said that my husband had already told them his wishes and we needed to respect that. The physician did intubate him then but I was furious at the delay when we had already specified our wishes. I could tell that this physician felt the same way as the social worker did. When my husband was first admitted, this physician said to me during the first morning rounds, "Tell me about ALS. All I know is what I've read on Google." I was seething over this comment. What a total idiot he was! Luckily, he was only on this service for 1 week and after that we had a series of compassionate, intelligent physicians over the next 4 weeks.

I am religious and I felt that if God wanted to take him, then He would. Apparently, God had other plans because after a stormy 10 weeks in the hospital, my husband came home. It has not been easy but I do cherish every day we have together and am so happy that I did not let them end his life that day.

Sharon
 

Green Queen

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Ok, so I normally steer clear of life and death threads. I openly admit I have absolutely no knowledge of what PALS and CALS go through. You are all heroes in my book.

But Dawood, mate, bit condescending at the end there. What's best and right for you is not best and right for everyone. I salute you for what you did and didn't do for your wife, that's not the issue.

I actually reckon it's the religious bit that got me. I'm religious. You've actually made me feel quite upset about how you are uncomfortable being thought of as religious. You should have stopped at 'my post expressed no thoughts about religion'.

I am no better than anyone else. Never have been. Never will be. I don't have a high horse, so please, get off yours.
 
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