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NotMyDad

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So today my sister had a 'conversation' with my (non-speaking bulbar onset) father, and he finally said it explicitly. He doesn't want a feeding tube, and that's that.

He chokes on food almost daily even though he of course tries to be super careful while he eats and eating takes most of his time everyday.

Some choking episodes are more scary for him than others, but maybe not scary enough. They are horrible for my mother (who has a progressive dementia and a few other sicknesses, too).

I was going to send my father another email about this - for instance, what's going to happen to those of his family members who'll end up witnessing his final choking episode...

But I think I won't write it.
Or should I?

He's 73.
 

affected

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Unless he is eating normal meals with chunks of meat etc he is not going to choke to death, it pretty much does not happen. It's not an obstructive choking they experience.

What is likely to happen however is that he will aspirate a little food or liquid into his lungs and develop a pneumonia.

However, it is his choice and you might want to consider talking with his health team and maybe a hospice and finding out how to support him in his choices. Try to think about the horror he is going through, rather than ask him to put his own self aside at the end of his life and only consider others. I know this may be a shock to read.

It is our place as CALS to support and advocate for our PALS to ensure they get what they want and can live and die with dignity their own way.

You will have more peace after he passes if you can do this, than you ever will have if you try to tell him what to do.

Many PALS refuse pegs and breathing assistance and die very peaceful deaths.
 

NotMyDad

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Thank you so much for your reply, Tillie!
This helps tremendously, and at the same time - does not at all, or I am just unable to process this... I feel like a lost little child when I think about my father... And my emotional reactions to what's happening show it (he doesn't see it as I'm across the ocean from him).

Now, he does still eat normal food...

Last time he choked on a piece of bread, and the previous time on a piece of meat.

So does this mean this is life threatening given that he still eats that?
 
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Atsugi

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Little bit of blunt talk.

ALS removes our choices. We can't move, we can't scratch, eventually we can't even breathe. For that reason, I believe we should allow people with ALS to make whatever choices they decide, and support them fully, even if we believe them to be wrong. They are not children, needing permission from us.

When I am someday at the end of my time, I will make decisions about my day-to-day living and also about my final moments. I hope no one will try to second guess me.

It's his life, NMD. Although you might be certain, even absolutely sure of what would be the best thing to do, it's still not your call.

As you know, every bite he takes and every sip he takes is a life-threatening gamble. He knows that, too.

Trigger Alert.

But that does not mean that he will choke to death. He might simply stop eating and drinking, and use morphine to eliminate the discomfort. He'll probably get weaker, he'll spend very little time awake, and what little urine comes out might begin to be brownish and chunky. His organs will break down and his heartbeat and breathing will fade to nothing. With the proper administration of morphine, he won't feel any pain, discomfort, panic or fear.

Personally, I recommend NOT calling 911/999. EMTs are trained to keep a body alive, and may not let him go peacefully. Check the law in his location.

When my own wife passed, I just called the funeral home, who drove up within minutes and took the body gracefully and respectfully.
 

sunandsea

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NotMyDad - My heart goes out to you. We are in a similar situation with my PALS who has said from the early days of diagnosis that he doesn't want a feeding tube. He is still able to eat but is choking on liquids so things need to be thickened. I've learned enough to know what is coming and it scares me but I know I need to respect his decisions and wishes. It's so hard when you may think differently. I keep reminding myself that I don't really know what I would want if I were in his place but I would want to be listened to.
It must be difficult for you to be so far away as well. We have three grown children and it's hard for those nearby and for the one who lives long distance. It's never easy to see your parent age and to age and lose abilities each day, to become someone so different, is terribly difficult. I'm sure your father can feel your love and he needs that as he faces the challenges this disease brings.

Thank you, Mike, for the "blunt talk" and the reminder of pain relieving means. I take comfort in that and hope we will be able to make the end peaceful and pain free.
Thank you, Tillie, for the reminder of the role of the CALS in all of this.

Thinking of you, NMD, and wishing you and your family - and your dad - peace as you deal with the coming days.
 

lgelb

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It is more likely that foregoing a feeding tube will lead to aspiration pneumonia or respiratory insufficiency, as opposed to sudden death while choking. Comfort and pain in either of these scenarios, as Mike noted, can be managed well. Let your PALS know that this is your commitment and they will be comforted as well.

Best,
Laurie
 

KateEmerson

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Hi NMD, do you think your Dad would consider having his food puréed ? Or " soft food" ? As my PALS ability to eat solid food declined we had a lot of major coughing episodes that were pretty scary for him and us. One day after an episode I told him that it had scared me and asked him if it scared him, he said it had. I tried to observe what food caused the most difficulty and how we could make it easier to eat. Beef was early on so I would use slow cooked beef and chop it up in a food processor with beef broth or gravy. Over time all his food needed to be chopped with some liquid and then eventually puréed. I knew how important eating was to his quality of life and tried my best to figure out he could keep eating for as long as possible.
 

pdcraig

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Hi NMD,

A bit of an add to what Kate mentioned. My PALS has refused a feeding tube and when he was still eating regular food had a couple of choking episodes. It was taking longer and longer for him to eat or try to eat.

We went through minced and are now on mostly pureed everything. It was a battle with each change in texture because it meant he was enjoying his food less and less.

Rather than focus on what he was having trouble eating, I started looking at what he could eat fairly easily that he still liked. The compromise has been, eating isn't such a chore anymore with the change in texture that he isn't fond of but there are still things he does like that he can eat almost normally.

For him it's sweets. Mousse cake, cheesecake, shortbread cookies, ice cream, things he can eat just for pleasure rather than sustenance. Switches the focus a bit and he looks forward to at least part of his meal. It made a big difference for me in convincing him to make the changes.

Good luck, I hope you find a solution that gives you some piece of mind and allows you to respect your father's wishes.

Paul
 

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My Chris accepted a feeding tube ... BUT ... he waited until he was starving and dehydrated. Then he still refused feeds and continued losing weight. He continued eating softer and softer food, til he was eating puree. He suffered and aspiration pneumonia and went downhill very quickly after that and had an incredibly peaceful passing.

Having a feeding tube was not a solution as such. Certainly if he had been on peg only he would not have had that aspiration.

BUT he made the choices, and he was terminal regardless of any of those choices. He did it on his terms and I would do it all the same if I had the time over again.

I know how hard it is to accept this, I wasn't at that point right on day one that's for sure!

Can you access some counselling to help you work through your feelings on it all? I went to a counsellor regularly and it was so helpful for me to work through my own feelings with someone that was there just for me.

Lastly, if you are not physically there neither of us can say how threatening his current swallowing situation is. As Mike says, every bite and sip is potentially life-threatening. I will admit I never sat through a single meal with Chris without wondering inside if this would be the meal that would cause an aspiration pneumonia. Taking away his ability to taste anything would have been too much for him to stand (he was a cafe owner so his life had revolved around food, coffee, talking and laughing, all the things he lost first). So he, as an adult, made his choices.

Sending you a hug, if we were talking face to face I would have a cry with you, hug you and then tell things in a way that would make us both laugh. So hard to do that well with text xxx
 

NotMyDad

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I wanted to thank you all for replying to my post. It means so much to be able to write about this stuff, to ask questions, and to get answers, and to know that you know so well what we are going through. I am very, very grateful for this forum.
I'll also have to read your messages a few times - it's so hard to process this stuff...
So I'm going to reply more properly probably within a few days.
Thank you, once again!
 

Maryl08

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Reading your story had brought back so many memories of my mom. I'm so sorry to hear you are going through this. ALS can be very traumatic for everyone involved. I remember witnessing my mom choking on a piece of turkey and completely breaking down and losing it the first time. However, I agree with other here that you should respect his wishes. A tube will prolong his life and perhaps he doesn't want that. I know I wouldn't. I've seen what the disease does as it progresses and a prolonged life with all the complications that may come with it is not for everyone. Soft high calorie foods help. Also we used ensure to help raise her calorie intake. And we thickened liquids to help it go down easier (but it doesn't taste the best). Please spend as much time as possible with him, focus on the good things and let the other things slide. This time passes too quickly.

Lots of love and positive thoughts.
xx, Mary
 

NotMyDad

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Thank you so much, ChildofALS...
Thank you for sharing your so very painful story and for confirming, yet again, that we are doing the right thing when we don't push 'better solutions' on my dad even though they do seem better to us....
Without all the posts I read here I'd really think that we should push and would feel guilty if we don't.

Now I look at all this very differently.
 
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