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starente

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Joined
Oct 20, 2014
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8
Reason
Loved one DX
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US
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nj
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twp of washington
Hi again. One of the things weighing heavily on my mind is what hAppens towards the end. I'm terrified that my father will suffer physically and mentally by being aware that breathing and swallowing are compromised. Does anyone know if when it gets to that point they are given something to relax? I'm struggling with a lot of questions and am planning to go to a local ALS support group and an Anxiety and Depression meetup group as well as participate here.
 
i don't know if could ask that. but me to would like to know.
 
For most of us we gradually lose the various functions so yes you know swallow is getting hard and then completely gone ( but your dad might decide to have a feeding tube). Breathing declines gradually as well. At the end there are certainly medications that can be and I believe should be given to ease anxiety and air hunger. In this day and age NO ONE with ALS ( or other conditions) should have to struggle at the end. There are many terrible things about ALS but there is no need for that to be one of them. It will be good to discuss this ahead of time ( after the dust settles) so you and the rest of the family know and understand what your dad wants.
 
Nikki is totally right. There is no need to struggle at the end.

Who is his caregiver?

Has he contacted the Paralyzed Veterans of America and the Veterans Administration yet? There are healthcare and also compensation benefits that he will need and they are very generous.
 
It's such a hard discussion but I can assure you that I was able to give my Chris a very dignified, pain free and peaceful ending.

The meds available really do work, and it has given me a huge comfort.

I think my thread called something like downhill in the caregivers section documents how it was when you are ready to read about real experiences.

edited as I got the link to my thread
https://www.alsforums.com/forum/current-caregivers-cals/25343-downhill-4.html

Atsugi also can attest to how well he cared for his Krissy at the end, he did an amazing job and she was an amazing lady.

Being prepared and having all the information well in advance really helps to know how you are going to cope with it. Truly, as hard as it is, Chris and I had a plan we made very early after diagnosis. As his FTD progressed I was so glad that we knew how he wanted it to end, and I could do that with confidence.
 
Thanks everyone. He's still eating and got the feeding tube inserted already. I also have all the veteran information for him. I will try to find comfort in knowing that there are meds available...
 
Just take it one day at a time, from what I hear there's no real pain at the end. I don't think much about the end, live in the now.

Janie
 
Your local PVA, Paralyzed Veterans Association will run all the VA traps for you, and quicker and better than you can.
 
>Just take it one day at a time, from what I hear there's no real pain at the end. I don't think much about the end, live in the now.

see the ABcs of ALS on youtube
 
My dad had discomfort and pain in the beginning and horrible pain in the end. He was in the bed for 6 months due to a fall. Hospice helped but dad didn't want to be out of it either so he dealt with a lot, it would move from side to side, his legs, his elbows, his arms. Morphine and methadone controlled it but it didn't stop it. His death was peaceful but he did suffer. I tell you this because you need to know everyone is different but there are so many options to help him. Hospice is a God Send
 
My husband died peacefully in his sleep this week, having had the peg tube put in that day. For him, although he was at times uncomfortable, his suffering was more "internal" as he became more dependent, and was a bystander, watching life around him that he could no longer participate in the way he wanted to. Dont worry about physical pain, which medicine can control.
 
Cheerleader, I am so sorry! I'm sure it was difficult under his circumstances - to have the pEG tube put in in anticipation of borrowing time, and then to pass away. I'm glad he died in his sleep, what a peaceful way to go. I pray it will be that way for my Tom - someday. God bless you and your family!
 
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