Status
Not open for further replies.

Amandagall5

Active member
Joined
May 9, 2015
Messages
34
Reason
Lost a loved one
Diagnosis
12/2012
Country
US
State
OK
City
Midwest city
Hello,
My husband will not have a peg tube, won't use Cpap, trilogy, cough assist etc.. He can move his head a little from side to side but that's about all he can move, doesn't have much of a voice. He can still swallow fairly well so I have been feeding him a softish diet. The amount of food he eats is not a lot but he doesn't want his food puréed or blended. He lost 9 lbs in the last month. I've also noticed that parts of his face have started to twitch slightly. I can't discuss anything with him because he just says no, I don't want to talk about it, acts like he doesn't understand me,or just ignores what I say.
So I guess my question is, how do things progress from here with his body? Does he start to sleep more? What happens as he gets weaker? I know he is going to die, I just don't know how it happens.
Amanda
 
Hi Amanda,

I feel your pain girl. I am so sorry that your husband doesn't want to talk about his choices with you so that leaves you feeling confused and sort of hanging. I have been thru much of this, and know of others that also have done the no intervention route.

From what I understand, he will sleep more and more as the CO2 builds up in his body. his weaker state form his weight loss will increase the sleeping too. eventually he will slip away. my husband just recently agreed to the trilogy and then the cough assist. He was not starving for air but his heart rate began to increase. My husband does cough a lot and that is when he gets panicky so the trilogy and cough assist help there. I know that you have tried to talk with him but he turns away. that is so unfair. do you have any help? It is ok that he has made these choices to control how he dies--it is his life and his death after all. but his choice to leave you out of the conversation causes you pain. I hope you have someone to talk with like a counselor or pastor, or good girl friend . Perhaps it is time to call in hospice for both of you.
 
Amanda. I can't help at all I'm sorry, except to offer comfort...I'm thinking of you and I'm sure you'll get sound advice.
God bless, Janelle x
 
It must be very difficult to comply with his wishes when you don't understand them. I have written instructions that I will have no ventilator and no peg tube. I am an only child with no children. My husband is amazing, but this is hard on him to. I have fought with this demon for almost 8 years. I can still talk, eat, and swallow. Both hands are gone and I'm completely dependent on anybody else that will help me. I'm sorry you're going through this and wish I had an answer for you.
 
Thank you everyone.
We do have hospice now, I am going to ask the nurse when she comes tomorrow. I do have help and someone to talk to. I was just thinking about what happens to the body and if he would be in any pain.
I hope this doesn't sound bad, but I'm wondering if I will feel the loss less when he dies than I would have had he been more communicative in the past? He's never been a very emotional person or expressed his feelings much during the last 35 years. I guess I just got used to it.
Amanda.
 
Amanda, let me respond to your feelings about loss.

If you feel guilty about your true feelings, don't. The most useless and counterproductive emotion is guilt. Don't give in to it.

You might feel relieved when he's gone (or not), and either way, it's normal.
 
I use my Bipap currently because I can still function in most ways and it helps me. When I can no longer eat and need a peg or no longer get enough out of the Bipap, I will not use a peg or vent. I just do not see the point financially or emotionally in dragging things out. If my mind continues to slip I may stop the bipap as well. My wife will not speak with me about it as she just cant deal with it.
 
Amanda, how difficult this must be for you. ALS affects families, not just the ones with the disease. I'm not sure who suffers more, actually. I recently had lunch with a woman who lost her husband to ALS who had made the same choices as your husband is making, but he did it more inclusively I think. In a lot of ways his decline was easier and faster on her.
We CALS are in charge of and responsible for EVERYTHING except out PALS choices. I'm glad you have hospice and hopefully they can assist you thru this transition.

Hugs,
Sherry
 
ALS affects families, not just the ones with the disease. I'm not sure who suffers more, actually.

Sherry, I mean no disrespect at all and I think I understand the since of your statement, but it is us who have this b1tch of a disease and see everything we could once do removed from us. We sit and watch our loved ones suffer because of us and can do nothing about it. I know it is so very hard on our CALS, but that said our pain; physically emotionally, and spiritually, is beyond anything anyone can imagine.

I watch my wife suffer so as she tries to come to grips with what is happening to me, and I suffer as much knowing I cant help her as she does wanting to help me. Part of me just wants to be done with the battle so that she can mourn me and hopefully get on with life. I know she will always miss me but maybe after I am gone she can have some normalcy. There is nothing more I can do for her. This is only part of my pain but it is real and almost impossible to bear.

I respect and appreciate the CALS and all they do, but have it worse, I am sorry but no.
 
Amanda, there is no single way of dying with ALS, so we can't predict exactly. He could die in his sleep, or struggle for air. You don't mention his breathing, one of the barometers for how things go. As far as sleeping more, for some of our PALS, that doesn't happen until the very end (sometimes night turns into day and vice versa), and at the very very end, there may not be sleep at all. It may be what you expect, and it may not. With preparation, there is no reason for him to be in pain.

Even though he has refused various interventions, I would still stock some codeine and morphine against the day when he asks for something to help, as hospice may not be on the scene in that moment.
 
Amanda, I would ask the hospice nurse to sit down and discuss this with you both. Tell her it's not an emotional conversation and it's not about right or wrong, it's about how you, your husband and your hospice team can work together to achieve what he wants. Let the nurse do all the talking and tell him plainly that it's time to put a plan in place and it's for him to call the shots on this plan. Sometimes they talk better to someone else, not always but it may be worth a shot.

I was lucky that Chris talked about some of his wishes early after diagnosis and filled out a health directive (I think these are called a living will in the US). So as he completely shut himself away from me over the next couple of months (he had FTD as well), I didn't need to keep asking him stuff, I had enough knowledge from those early conversations and I simply advocated for him with health professionals.

He made many choices that were different to what I would have made for him, but I just let him make his own choices ensuring he had access to information if he wanted it to make them informed choices.

We can't say exactly how things will go, but your hospice team should be able to tell you some possible scenarios based on what they are observing with your husband. That way you can make strategies. I would hope that if these conversations are not emotional ones, but factual, your husband may feel more able to express what he wants. Maybe he feels really threatened by facing the emotional side of all of this. Hopefully this will also help you to let him know that you are prepared to support him in what he wants.

hugs
 
>I watch my wife suffer so as she tries to come to grips with what is happening to me, and I suffer as much knowing I cant help her as she does wanting to help me. Part of me just wants to be done with the battle so that she can mourn me and hopefully get on with life. I know she will always miss me but maybe after I am gone she can have some normalcy. There is nothing more I can do for her. This is only part of my pain but it is real and almost impossible to bear.

Ditto that!
 
>Sherry, I mean no disrespect at all and I think I understand the since of your statement, but it is us who have this b1tch of a disease and see everything we could once do removed from us. We sit and watch our loved ones suffer because of us and can do nothing about it. I know it is so very hard on our CALS, but that said our pain; physically emotionally, and spiritually, is beyond anything anyone can imagine.

I agree, to watch yourself decay each day and know each day will be worse than the last. I think the last sentence is especially true, we suffer with what the disease does to us, which is horrific beyond words, and also see what it does to our loved ones.
I think hell on earth is not too strong a term for this monster.
 
Today I found out that only a relatively small portion of my Bipap is being paid for by insurance. This means I have to pay more than I have to keep it. At this point I am seriously considering returning it and saying the he11 with it. What is the point of building debt with not much of a life to look forward to? I know many of you will disagree, but these are the questions and things that I (we) have to consider with this b1tch of a disease.
 
Well that completely stinks Pete! Have you looked into trying to buy a used machine? Is that feasible at all ? Bipap seems like a comfort measure as well as a thereutic one. I hate for you to suffer more than necessary
 
Status
Not open for further replies.
Back
Top