Weight Question

[Labinma]

I researched other entries re: weight but guess not finding what I am wondering about. My husband is in his 3 1/2 year plus, and now is basically a concentration camp looking individual. I only put it that way as he says that to me that he is. He is skinny, skinny, skinny. Speech slurs, cramped hands but walking still and driving a car. He simply is not getting enough nutrients. He is not trying to either. At least not in entertainment of a peg and/or working with a nutrient counselor.

Basically he is letting it take its toll. Has anyone experienced this when a PAL just allows the conditions to take him/her. Anyone experience my husbands route, where he is a delicate skeleton of a person but still functioning? If he doesn't trip or fall, or any major accidents or catch a cold or flu what will happen on this course?

I know there are not crystal balls but watching it everyday without knowing what is coming is a slow death to those that love them in some ways.

 

[Atsugi]

It is so frustrating and also so sad to watch someone waste away, especially when we think it is avoidable.

You asked "what will happen on this course." In general, every course leads to the same result in ALS. Specifically, it's hard to tell.

My only advice is two-fold: First, since ALS is about losing control and losing choices, I think we should not push the PALS to do what WE want them to. If I were dying, I would really resent somebody telling me that I don't get to live my remaining days as I choose. Second, our most important duty to our PALS, IMHO, is to just be there, and make them as happy and as comfortable as they can be.

 

[Firefighter58]

I would suggest possibly see an MD it may be depression setting in and if it is treatment should start as soon as possible. It may only require a mild antidepressant, and food. My problem is the opposite, I eat too much to the point none of my pants fit. As far as what will happen on this course, you know the answer to that.
Al

 

[KimT]

There is an antidepressant that is also a very strong appetite stimulant: Remeron. The only bad side effect is constipation. Remeron makes me sleep like a baby. In higher doses it is more activating and at low doses it is more calming. I use the low dose.

 

[Labinma]

Thank you all. Responses are just so comforting. I guess what I am wondering is if no outside impacts/issues occur will his body just one day give out due to lack of food/sustenance? ie. does it just stop functioning all at once, or does it usually go down element at a time., ie, he looses his ability to walk, or if he is just not eating enough, does the internal body just incrementally shut down? Is it an immediate thing, or will he just not feel well and if administered to a hospital will they automatically feed him liquids and nutrients just as they do in any normal admittal? Then with a proxy, just follow that and make him comfortable. Is this point the time I would consider hospice, or is he able to stay in the hospital if my insurance is comprehensive.


Ugh, I guess I am looking for some nitty gritty scenerios of what happens to prepare myself for end stages of a person that refuses assistance and will just live out the disease to the bitter end. I apologize, I know it is not a pretty topic.

 

[Barbie]

He is in charge and you cant make him eat--and eating probably is very difficult for him. my husband refused a peg and wasted away as well. I think it is horribly difficult for the family to deal with.

What you can do is try to pump up the calorie intake in everyway possible. be sure that you serve him foods he can eat with some ease--and look into calorie supplements, Ensure, whole milk, lots of butter--what ever adds the fat!

in my experience with my husband, someone like your husband will go downhill perhaps a bit faster. not all at once, but starvation/malnutrition add to the mix as the disease progresses. and the disease progresses so differently in each Pals. He does not have to be admitted to a hospital--that is a choice the two of you need to talk about. he doesnt' sound like he is at the end yet if he is still functioning and getting around on his own steam so I would definitely think about depression--it is something that you can have and not realize.