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NolaJen

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Oct 21, 2013
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Lost a loved one
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La
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New Orleans
I posted a long time ago about my dad. He does not have MND, they still think he has CIDP (although an outlier variant of it). There are some differences in his disease and ALS, but ultimately they look very similar.

He is unable to move any part of his body, he is on a trilogy home vent 24/7. He was recently in the ICU for mild pneumonia and is steadily declining.

The doctors are talking about trach and peg. I am heartbroken. I don't know what he wants, he seems to change his mind about it fairly often. I know he doesn't want to die, but his quality of life is so poor.

I don't know anyone in my life who has been through this. I'm scared a trach and peg will make things worse. He is still able to talk, although his breathing limitations have impacted his ability to speak.

Any advice? I know we are nearing the end. I don't want to see him suffer anymore, but I also don't like the alternative, which is life without him. I'm so sad.
 
am sorry for your pain. this is a tough time for you and for him too.

hugs
 
I'm sorry I'm not knowledgeable about the care for a ALS patient since I'm not my dad's caregiver to give advice. But, I will add your family to my prayer list. Sending you a hug. Kim
 
NolaJen, your dad and your family are facing a tough decision. If you haven't already, take a look at SantaJoe's Pity party thread to get an idea about how Debbie dealt with SantaJoe's last few months on a vent.
 
Thank you so much for your replies. Much love to you all.
 
JEN, do you have other family to discuss with? Who has his health power of attorney in the advanced directives? Are you going through this alone?

It's a tough decision, but it has to be made. As long as he can communicate, he is in charge of his health care decisions.

I feel for you, as I've had to make the decision to withdraw life support on several occasions in recent years. Perhaps my experiences can help you in some way.

My dad had Alzheimer's and was noncommunicative for 5 years in a veteran's home for dementia. He just sat and stared for years. I guess that's almost "vegetative." One day he fought for breath with every muscle in his body; it was horrible to watch. His physical battle continued over a week as the doctors used every machine to keep him alive. I finally told the doctor to stabilize him just long enough to check out of the ICU back into his hospice bed. His nurse administered a dose of morphine heavy enough so that he didn't feel any pain or fear when he died the next morning.

My mom was frail but physically stable. Her mind was gone. She sat quietly, noncommunicative, not answering questions in any way. We decided this was something from which she would never recover. So we ordered her pacemaker turned off. She died quietly in her sleep a few days later.

My aunt was 92, active and happy, when she was diagnosed with chronic heart failure, a treatable condition. But she simply decided she had had a good life and it was time to go. She checked into hospice, told the doctor not to treat her, and they kept her comfortable with medications until she died without anxiety or pain.

My wife had ALS. She was a doctor. She knew death quite well. She told us that she wanted no tubes, no PEG, no vent or trach. At home, when she was in her last days, her CO2 built up in her lungs, which is how people with ALS usually die. Following her wishes, we gave her morphine instead of ventilation. Her friends and family visited to say goodbye. One day, her eyes locked forward and she was totally locked in, unable to communicate in any way. That night, as I held her hand, her heartbeat faded away forever. I'm happy to say we honored her wishes and she got the quiet death with dignity she wanted.
 
Atsugi - thank you so much for sharing your experiences. I am, fortunatlely, not alone. My stepmom is his HC POA. I think part of the problem is he keeps changing his mind. He will say he doesn't want the trach/peg, but when he gets in crisis (which is happening more and more frequently) he will say he wants it. My fear is he will end up intubated, and unable to tell us what he truly wants. I don't want to harp on this with him b/c it's such a sensitive topic, but it's so important.

I'm a hospital social worker, and my H is a physician, so we are very familiar with end of life, hospice, etc. However, it's much different being the family member and not the social worker:)

At this time, he can communicate, even though it is becoming difficult. I will try to talk to my stepmom alone, to see if maybe she can bring it up with him. I tend to be more forceful than she is, and I don't want to upset him.

I talked to one of his pulmonologist and they assured me they can keep him comfortable when the time comes.

He has had ongoing issues with CO2 already:(
 
NolaJen,

Although I have nothing to add to the conversation you are currently having within this thread, I did want you to know that "our thoughts are with you"...

Jim
 
>If you haven't already, take a look at SantaJoe's Pity party thread to get an idea about how Debbie dealt with SantaJoe's last few months on a vent

Ditto that!
 
Nola,
So sorry your family is going through this.

As a social worker, you know that pts process info differently so when your dad is more lucid you might show him some YouTube videos of ALS pts w/ vents and explain what you said to us, (with your stepmom, be together), that you want to be able to support his wishes if/when he can't.

Since he panics during crises, you might walk through the last time, acknowledge the fears, provide some examples from this forum and others, what a good death could look like, as the counterpoint to pure fear. And talk about what his current quality of life is, and the extent to which it could ever be better, w/w/o a vent. So for comfort vs. life extension, the best and worst scenarios, and which is the priority to avoid (minimax decision-making).

And, obviously, work on whatever he feels is undone. And since you seem ambivalent about quality vs. quantity of his life as well, which is perfectly understandable, maybe work through some of the same videos and to-do's.

Diane H's site has a lot of good info as well (she is vented).
 
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