Decision on whether to stop giving rilizole to my husband who is dying of als
By suspenseful
@suspenseful (40193)
Canada
August 19, 2010 12:30pm CST
My husband is at the last stages of als - completely bedridden, having to have his head forward on his chest so his tongue does not fall back, and needing medicine to help with him breathing and when he gets pain from the remaining muscles contracting.
Ever since he knew he had als (and was in a wheelchair at that time( he has been prescribed rilozule that is supposed to help with the anxiety, and expand his life a little while (I think the doctor said about six months.)
Now my nurse friend tells me to stop it and she is going to talk to the palliative care nurse of whether I should. I did not give my husband his morning dose and hope that the nurse does give me a call and show up.
but here is the problem. Supposing that six months or so is not up yet, and perhaps with the Rilozule my husband may live to the end of this month. My friends say that I will have no financial worries, but our fridge is going, and I do not want them to say "well you could put off buying the new fridge for a few months:" when the only reason is because the van had not been sold yet and I had to put the coffin, etc. on a credit card plan because he died sooner then what God intended.
And it might me getting a cheaper coffin and not being able to have a proper send off with the funeral snacks, etc.
So I was wondering whether taking my husband off rilozule is all right since he has not long to live anyway or whether that will give him a reprieve for a few weeks and make his suffering less intense.
I would appreciate help from those whose families had spinal als since this is the kind my husband has.
5 people like this
6 responses
@suspenseful (40193)
• Canada
20 Aug 10
The nurse called the doctor and she said it was all right. She gave a prescription for some other medicine that had the same effect in making him breathe better and cutting down on his anxiety, as well as the other stuff.
He is getting close to the end, and it may be tonight or days, so I think it is to make it easier for him to pass.
3 people like this
@suspenseful (40193)
• Canada
15 Sep 10
Your welcome. Well, financially things are bit tight because I paid for the plots right off, there was an overdraft because an automatic withdrawal I thought had been canceled went though. (So now I am not vacuuming the floor and just picking things off the carpet to save electricity, and keeping off as much lights as possible). My older son was over last night and I got the forms for the main insurance signed as well as that for the Blue Cross.
Unfortunately since I have bad eyes (cataracts run in my family and I have astignatism, I have to buy the expensive package. Really do not need a semi private hospital room, but at least I do not have to pay any deductions. (Suspenseful thinks: no deductions huh? Maybe I can buy a pair of expensive reading glasses.
)
It is a bit quiet, I have not heard about that fancy commode chair so I guess they are still looking and hope if those guys who picked it up misrepresented themselves, they get fined and have to pay for it. Otherwise it was lost and maybe another patient wanted it and the Als society gave it to him or her for the time being and someone forgot the paper work.
I have an idea of how to fix it. Have a main filing room for all the work under the item rented and then put under it who they rented it to and under whose authority. That way instead of going to the company and looking under it and saying, "Aha the Als society is letting Mr. S who has ms use the fancy commode chair," they will see the title "fancy commode chair' Als Society, loaned to Mr. S.
but of course, they did not think of that. Their loss.
)
It is a bit quiet, I have not heard about that fancy commode chair so I guess they are still looking and hope if those guys who picked it up misrepresented themselves, they get fined and have to pay for it. Otherwise it was lost and maybe another patient wanted it and the Als society gave it to him or her for the time being and someone forgot the paper work.
I have an idea of how to fix it. Have a main filing room for all the work under the item rented and then put under it who they rented it to and under whose authority. That way instead of going to the company and looking under it and saying, "Aha the Als society is letting Mr. S who has ms use the fancy commode chair," they will see the title "fancy commode chair' Als Society, loaned to Mr. S.
but of course, they did not think of that. Their loss.
Glad the dr. let you take him off of it and I am sorry to hear of your loss,but at least he is not suffering any more.Have a great day.
@samson1967 (7414)
• India
19 Aug 10
Hi there, when life is at stake dont ever think of materialistic aspects even in your dream. You think of a fridge when the bridge is collapsing.. Oops!!!
1 person likes this
@suspenseful (40193)
• Canada
25 Aug 10
I am thinking of "what if the food spoils" If the fridge goes, that is important because we put the unfinished packages of the formula my husband had to eat in them. When they were unopened, they were all right, but once opened, they had to be put in the fridge. So stop this about materialism. If it was about a fur coat, or my getting Dvds of my favorite Tv show, or my favorite movie, then you would have a right to complain, but to complain when I wanted to replace the fridge that is on its last legs, really!
1 person likes this
@mipen2006 (5528)
• Australia
20 Aug 10
Hello suspensful, I wish I could advise you, but really all I can do is pray for you. I have been reading your discussions for some years now, and all I can say you are a very kind and courageous lady. You have cared for your husband so well, and whatever you are advised to do, I pray it will be the correct decision.
2 people like this
@dragon54u (31636)
• United States
20 Aug 10
I can't say anything about ALS but when my grandmother was dying of heart disease (she was quite elderly) my uncle and aunt decided to make her comfortable but take no heroic measures. That's what she wanted and it shortened her life but her days were so much more comfortable and enjoyable than if they had forced her to live longer with her condition.
Look into your own heart and decide what is best for your husband. Can you ask him, can he communicate in any way? I know you do not want him to suffer but I do understand that you have to consider your own quality of life since your husband's is ending. God will show you the way if you ask Him.
1 person likes this
