Mixed Signals

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SKlocinski

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I am getting some mixed signals from Tom. He has never been one to express his feelings so he wouldn't necessarily say what he feels. We have in the past discussed that when he feels like it is all too much and he is ready to go, he can stop with the feeding tube and allow nature to take it's course with the help of hospice. A couple of weeks ago he asked me to make his funeral arrangements and said that he wanted to go on hospice care. He cannot or will not take enough calories through the tube. Any time I try to add anything with high caloric content (higher than 350 Cal. Ensure) he gets gas and stomach cramps. Nor will he allow me to give him more than 4 cans of Ensure per day. He will not use the Astral 150 enough to try and get accustomed to it and does not want me to call the therapist back to mess with the settings. And quite honestly, I don't think he has given it a fair chance. A few days ago, I asked him if he was not going to use it and suggested that he was shortening his life by not using it. So he used it for an hour a day for a couple of days and then stopped. Any time I suggest trying anything that might help him feel better he doesn't want to do it. I know that he is very fatigued but I am reminded of the old saying "You can lead a horse to water but you can't make it drink". All of those things make me think that he is thinking about giving up or that he is feeling that his time is short. Yet, he continues to say he is "not ready to go yet". That is certainly his choice to make but what he is saying is not supported by what he is doing. I feel like I am living in limbo.
 

soonerwife

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So difficult to understand and accept their choices. My PALS hates the trilogy and says he isn't ready for the feeding tube. Honestly, I wonder if he will ever be ready? His last PFT showed very low numbers although he says he has no shortness of breath.

I have noticed a decline in his eating while here in Hawaii. I think he doesn't want to eat around others because he worries about getting choked?!

He too is not one to talk about his feelings. Makes it very difficult for CALS to guess what they are feeling?!

So sorry! I feel your frustration. I wish I had an answer for it.
 

Atsugi

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My limited and humble opinion: Give the PALS what he/she wants, with a smile, whether you agree or not. Their minds might change daily, so it's best to live day-by-day.


In my view, the loving relationship between the two of you in these final years/months is way more important than the number of days he lives.
 

scaredwifetx

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I completely get how you are feeling. Steve is the same way. He doesn't seem to want to do what he needs to do. His breathing numbers and weight were down but he insists that he his not having any shortness of breathe or ready for the feeding tube. At times he acts like he wants to be here as long as possible and other times he just seems like he is giving up.

My heart goes out to you. It's so hard not knowing what way to turn.
 

affected

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I can totally relate.

Chris was so similar - he would constantly refuse feeds, did not even try a bipap, yet would tell people how he was 'fighting' and 'living with' ALS.

To my mind, he did as much as he could to hasten the processes, while saying he was not.

It was a huge thing for me (who is a bit of a control freak by nature) to just let go, and let him make his own decisions, allowing him what control he could have.

You know, there are no guarantees with this disease anyway. It is terminal - accepting that is, to me, the first really important step. I've known so many PALS to seem to be doing quite well, to be consuming heaps of calories, to be positive, and to simply die in their sleep at an early point when no one expected them to be anywhere near close to death.

So I learned to really choose what I would try and encourage him on, and let most things just go the way he wanted. I have never regretted a single thing in my decisions on this.

It's a big internal battle, as we naturally want to do all we can for them - but it's not necessarily what they want.
 

SKlocinski

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I did make advance funeral arrangements as Tom asked and he is now on hospice care. I believe that is a good choice for him since he is not really making much of an effort as far as doing things to help himself. My personal feeling is that he is struggling with whether to give up the feeding tube and just let go. I think part of him wants to and part not. He has always taken a long time to think things through so this could just be a reflection of his thought process. Every time he leaves the house it is so exhausting for him. With hospice, at least they come to him and they can provide comfort care as well as (perhaps better) than the doctor. I am by nature a control freak so it is very difficult for me to just allow him to do as he pleases but that is exactly what I am doing. I no longer try to get him to take more calories. I just try to be grateful that he is at least getting calories on a daily basis instead of being hit or miss like when he was still trying to eat. Nor will I bring up the bi-pap again. He knows the consequences of insufficient calories and not using the bi-pap and that is his choice.
 

affected

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I'm so glad he has hospice care. The great thing with them is they will allow him to make choices when he wants, and even accept him changing his mind on things.

I must say that I felt like taking in just enough calories to linger was very hard to watch. I felt like if he was going to take any nutrition, take heaps! Taking enough to just stay alive and yet continue losing weight every week just seemed an agony prolonging thing.

I never said this to Chris, it was his choice. I would offer feeds 5 times a day, he would usually accept between 2 and 4. I didn't argue it, just would say it's time, he would say yes or no. We supposedly had an agreement that he would take every feed I brought, as he sat and made me interpret to our dietician that the reason he continued losing weight was that I wouldn't feed him enough as he couldn't do it himself. You can imagine how that felt?! It got kinda bad though as he had me say it, the dietician looked at him, then looked at me kinda stunned, then he burst out laughing. Of course I then burst out laughing as well while Chris glowered, furious.
 

SKlocinski

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Today, Tom tells me he has lost another 2 pounds. Instead of pushing him to allow more feedings (or higher calorie ones) I just said that the only way I know to avoid losing weight is to increase the calorie count and that when he has a plan for doing so I will be glad to help him.
 

affected

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Whether Tom makes 'good' decisions or not, you are empowering him by acknowledging that it is his choice. Good on you!

Chris would tell me that there was no way to avoid losing weight because he was losing muscle. No health professional could convince him otherwise, but he used it as an excuse not to attempt to gain weight.

We choose to fight with our PALS for the last of their days, or we can can stand up for what they want regardless. :)
 
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