needing advice

[sunandsea]

Advice please - My husband doesn't have a peg and doesn't want one. He didn't do a lot of research on what to expect when diagnosed with als but knew he didn't want many interventions. He did agree to the trilogy when it came time to have it and is pretty compliant about most things.

He's still able to eat most things and is just having difficulties with swallowing thin liquids. I have been concerned about him not having a peg and what is coming but every time we discuss it, and he is asked if he wants it, he says he doesn't. But, as some of you might remember, he also has dementia and is often much like a child. I feel like I could convince him to have the procedure and he would do it. Is it fair to him to do that? Or is it wrong, knowing how he felt when discussing it in the earlier days? I wish I had known more in the earlier days and had encouraged him to do more research then. I asked but I think it was too difficult for him to do so and looking back, I can see that dementia was already impacting his decisions and understanding. I would feel more comfortable with his decision now if I felt he had made it with a clear understanding of what it meant.

I don't want to put him through pain and discomfort to have the procedure because of my fears about what might happen if he doesn't have it. But lately I feel like I'm not acting responsibly if I don't convince him to go through with it. When it came up at clinic, the doctor agreed that if he didn't want it, we should honor that and no longer discuss it.

Starving to death and not being able to have his meds when he can no longer swallow is a frightening thought. His respiration is about 58 so I know we need to move soon on this or we won't have a choice. Some days I feel like we are on a train wreck about to happen and this is one of the controls we are letting go of. Does that make sense?

Any advice? Thanks.

 

[Nikki J]

It is very hard. My mother had FTD as well but she had clearly stated before no interventions like a feeding tube. We respected her wish but I am not going to say it was easy. But what happened was she ate less and less became very frail and still had a little swallow function left. I am sure malnutrition hastened her end a little at least.

I think I would do it again because of clear wishes but without that I would have chosen a feeding tube.

If he needs comfort meds they can be given under the tongue or sometimes in a patch.

 

[swalker]

I am so sorry you find yourself struggling with this decision.

I can't really offer any advice. It is your decision to make. You know better about what the true intent of his wishes were before he had dementia.

I know that if I had dementia I would not want my life prolonged. I am not saying that is his view, just giving the view of another PALS.

Steve

 

[JimInVA]

Darcey, my PALS, did not want a feeding tube. Her breathing numbers were lowering rapidly and we were informed that if she was going to have it done, she should do it soon. We discussed it. She was adamant that when she could no longer swallow that she did not want to use a PEG to eat or drink. I explained to her that I was concerned that if she could not swallow, and did not have a PEG, I might not be able to give her the medicines that might keep her feeling as well as she should be. For that reason... AND ONLY THAT REASON... she agreed to the PEG. I now understand that medicines can be given other ways. And the PEG has been a big "pain in the arse". But she's never purposely made me feel bad about pushing for it. She is now beginning to have problems with swallowing. But she continues to be very clear that she'll not use it for liquids or food (sustenance) when she can no longer swallow on her own. In retrospect... considering the many times I pulled on it and hurt her... and the general "it is in the way, again" moments... I wish I had not pushed that point. It is the only issue that I sought compromise on... and will remain the only one... even as I wish I could take it back. I hope you find the answers that work the best for you and your PALS.

My best...

Jim

 

[sunandsea]

Thank you Nikki, Steve, and Jim. I really appreciate your thoughts, your honesty, and the experience you each bring to the subject. I was struggling with who to ask for input on this. I know our children think their father's wishes have been expressed and need to be honored. Friends don't feel they can voice an opinion but are sympathetic. I was hoping if I posted my question here someone would share their experience and viewpoint. I know my husband doesn't want to take any measures to extend his life. He said that initially and more recently. I just want him to be comfortable and not suffer as we get near the end. Many thanks again.

 

[affected]

Nikki explains it really well.

Don't think you won't be able to give palliative meds, that is easily solved without swallowing.

Such a hard thing, but I can only say I would honour what he wanted when he was capable of decision making. hugs, it's NOT easy!

 

[sunandsea]

Thanks, Tillie. It's good to keep remembering that meds can be administered to make him comfortable. If we can also avoid frightening choking incidents, that would be wonderful ...the uncertainty of how this will play out can be overwhelming at times. But I do want to honor his wishes. Thank you.

 

[lgelb]

58% FVC is not as final as it might seem; in one case series of radiology-placed tubes, the average was 17%, who wore their BiPAPs during the procedure. Still, from what you say, he may not "change his mind."

As to your question, I think you answered it if he has been able to articulate that he does not want to prolong life.

As Tillie says, there are a variety of ways to change diet to minimize choking (if thin liquids are a problem even now, I would consider thicker smoothies and soups) and drugs that allow for comfort during the end of life (though the greatest comfort is your ability to provide safe passage). At that point, if the mind is ready to go, the body will generally follow.

Best,
Laurie

 

[Jhill]

My husband also refused the peg, but agreed to the trilogy.

He had very rapid progression, starting in his hands & arms. He started using the trilogy 2 months after diagnosis. Up until 3 days before he died he was able to drink high calorie smoothies.
At this point, he was on hospice care and all meds to keep him comfortable were liquid.

Not getting the peg was never a problem as it was his breathing that caused his death. He died very peacefully.

I asked him if he regretted not getting the peg, and his response was always no.

Many hugs to you,
Joan

 

[sunandsea]

Thanks Laurie and Joan. Your words and experience are helpful. I pray he has a peaceful passing as well.