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Snowman78

Distinguished member
Joined
Dec 3, 2013
Messages
158
Reason
CALS
Diagnosis
12/2013
Country
US
State
SC
City
Sumter
In the last couple of weeks dad has gotten considerably weaker. He was eating well until this week. This week he has noticeably backed off of his food intake, probably eating maybe half of what he was. While he does have a little bit of a hard time with certain foods he is still able to pretty much eat what he wants as long as we feed it to him. The issue he says is that he just has no appetite and only eats for the sake of eating. We are trying to get him to at least drink one-two Boost drinks a day now since he is eating so much less. Any ideas on things to do either boost his appetite or ensure that he is getting all his body needs in a day? I know this is part of als but the swallowing isn't so much the issue. He has already made it very clear that there will be no feeding tube of any kind. Any ideas /sugguestions will be greatly appreciated. I hate saying this but his sake I hope the fight will end soon. He has been praying to just go for a while now.
 
>Any ideas on things to do either boost his appetite or ensure that he is getting all his body needs in a day? I know this is part of als but the swallowing isn't so much the issue.

will he drink smoothies? chocolate milk?
 
Might try smaller meals but more often. Instead of three meals a day, break it down to maybe 5 or 6 with a 2 to 3 hours between each one. I know for me, before it got the tube, I simply got tired and didn't want anymore. If I remember correctly, his breathing is compromised, in which case this should help. Most people don't realize it but the act of swallowing interferes with breathing, you can't breath in or out during the act of swallowing. This leaves you short of breathe and tires you out.
 
This won't be what you want to hear but--- I am going to share what the psychologist in the ALS clinic at the VA told me. Pals have very little choices and eating is one of them! We caretakers WANT our loved one to do what will keep them going, and eating is so important but- I was told to back off and let HIM decide. Will this cut his time with us? Probably but I am trying hard to bite my tongue and not push my wishes on him. He gets to decide how he wants to live the remainder of his life! Good luck. It's the pits to stand by helplessly with this monster disease!
 
Oh, forgot to mention, my PALS also chose not to have a peg tube, despite major swallowing problems, and a totally liquid diet. Not what I would have chosen for him, but again, HE gets to make the choices! His life, his choices! Donna
 
Thanks ya'll! He will drink the Boost drinks if you say something about it, so he gets some nutrients from them. Yes, his breathing is pretty bad. We are now giving him about .5 ml of morphine every three hours or so. He can eat although it definitely does wear on him. He just says he has no appetite and eats what he eats just for the sake of eating. I appreciate the feedback!
 
Yeah Donna, I don't push him to do anything. I ask him, give him the facts or information behind whatever, ask him if he is willing to give things a shot, but the final decisions are his. He had his legal paperwork done to allow about anything but a Ventilator and a feeding tube. I respect his wishes. The bipap is our last step as far as breathing.
 
We talked about it with the Hospice nurse today and she to suggested smaller bites and taking breaks to rest and said he when he will eat feed him and when he won't try to get him to drink a Boost or Ensure.
 
My hubby's total diet is Boost Plus- more calories than regular Boost. Is your dad a veteran? If he is, the VA will supply his boost! The VA has been so wonderful!
 
He gets limited VA benefits as he was only in for a couple of years and not during a conflict. Our nurse told us if his eating dramaticly drops off or stops Hospice will cover them as well. I will have to look for that kind of Boost. I think the one is using is extra protien or something like that.
 
>He gets limited VA benefits as he was only in for a couple of years and not during a conflict.

if he is a vet 90 days+ and ALS he is 100% disabled. See PVA ASAP!
 
Max is correct! Your dad should get 100% benefits if he was honorably discharged! Doesn't matter if it wasn't during a war. You must know that anyone serving in the military is 60% more likely to get ALS. Call your PVA and they will aid you in getting whatever he needs from the VA.
 
Snowman, it doesn't matter when he was in. ALS in considered service connected. They'll cover everything. As Max said, get to the pva quick (paralyzed veterans of America rep)
 
Thanks ya'll we will get right on that. I had no clue about the veterans with ALS part, although I have read some articles about that kind of thing.
 
He was on the USS Constelation for at least 2 or 3 years in personel.
 
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