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Snowman78

Distinguished member
Joined
Dec 3, 2013
Messages
158
Reason
CALS
Diagnosis
12/2013
Country
US
State
SC
City
Sumter
A brief history for those that don't know and then I will get to my problem I am struggling with. Dad is 80 years old and was diagnosed with ALS in December of last year and the diagnosis was confirmed in Feburary. Prior to diagnosis dad had paperwork draw up with his wishes to not have a ventilator or feeding tube or life support unless it was needed short term because of an unforseen emergency. After being diagnosed and educated on ALS he stated that these were still his wishes. As you can guess, he has declined greatly over the last year. He is now at a stage as of Sunday that he is too weak to do any kind of activity. A bed bath or just eating a meal completely wears him out. There are very few hours of awake time during the day now. He for the majority of the time is in the bed on bipap resting/sleeping. He is recieving the equivalent of 10 mg of morphine about every 3 hours to help pulmonary distress and make him comfortable and taking about .3 ml of liquid ativan to help him relax and rest at night.

Now the struggle I am having mentally, emotionally, and ethically:

1. Is knowing that he didn't want a ventilator to sustain life and keeping him on bipap all of the time which is essentially doing the same thing at this point and sustaining life he wouldn't be able to sustain on his own the same thing?
( I know the differences betwen them and that bipap can't sustain him forever)

2. Is this something I should even mention and discuss with him and mom or just keep my mouth shut?

Please please please give me your imput as I am struggling with this and truely don't know how to feel about it and always said I would stand tall to respect his decisions.
 
Bryan, do you now have hospice care?
 
I am sorry. I know how torturous this is. My mother wanted nothing to extend her life. So I have somewhat been through this though not the bipap issue specifically.
Could he not indicate if he wanted the bipap removed? I know someone who had ALS/FTD ( not a relative) and at the end she was able somehow to remove the bipap twice in a row, clearly indicating she did not want it.
Is it prolonging his life? Likely. But it is also making him more comfortable and comfort is surely your primary goal. I don't think I want a vent but I do want bipap and I do not have directives to remove it at the end.
 
What's his wife got to say? Who's the prime caregiver?

If he's still able to initiate communication, then I think your duty is simply to let him carry on. If he doesn't want the bipap, he'd let you know, wouldn't he? So it appears he's still in control of his own fate, as much as can be.

It's really hard to stand to the side while someone withers away, but he's the boss. Unless you're forcing him into something, your conscience is clear.
 
Max- Yes, we do have Hospice care

Nikki J- He could not remove it himself, his arms won't do enough to reach up and un fasten it. I am don't know if he has thought about it sustaining his life as he has been in and out of it since Sunday one time alert and aware and the next confused. I absolutely want him to be as comfortable as possible and will do anything in my power or ability to make it so. I try to explain evrything we do to him so he understands why or what it is. He doesn't have any directives pertaining to bipap.

Atsugi- Me and mom briefly talked about it at supper tonight both kind of not sure what to think about that but still feeling we are doing the right thing by having it on him and making him as comfortable as we possibly can. He can't talk but he understands us and can answer questions but I haven't asked him about this yet and didn't know if I should. He doesn't resist putting it on or the morphine if that tells you enough.

Just to make sure I am clear about my stance. I do not want to take it off because I feel it makes him comfortable because it is helping to breathe properly or better atleast. I do not feel bad giving him the meds as directed because it makes him more comfortable and helps him to relax. We are blessed each day we get to have him around! Mentally and emotionally I know that a vent and bipap aren't the same thing and have no problem keeping him on it until his last breath or until he says no. It was more the ethics that I guess I had a question about in mind as far as both doing primarily the same thing to an extent and wanting to be sure to obey his wishes. I love my dad with all of my heart and have done and will anything I can to keep him comfortable and secure right here at home with us!
 
Bless you for your loving care. Suspect you won't have to make the hard decisions, as he will quietly slip away when he is ready and that's what we all want in the end. May you have strength and courage in these final days.
 
Snowman, a good friend of mine here locally passed from ALS about 4 weeks ago.

He had bipap and was on it full time in the last couple of weeks. He passed with the mask still on his face.

What I'm saying, and I learned a bit from this friends different progression and how he passed, is that it will not keep your dad alive for months or even weeks longer really. Yes he may pass very quickly without it, but it will require much higher levels of medications to keep him calm.

The bipap will probably give him some comfort during this time.

Please get your mum and sit down and have a good talk about this with the hospice or your doctor as soon as you can, as they know your fathers individual situation.

It is so awful to watch and feel you are just waiting for death, so get all the advice you can. We may all say slightly different things, but then I think that helps you work out which views your gut settles with the best. That's about all we have is our gut instinct.

Holding on to your hand in this tough time, you are doing a great job. You are caring, you are thinking of his wishes and comfort. That's a wonderful thing.
 
Snowman,
First, may I say, your parents are so proud of how you've turned out and appreciative of your help, I know.

Second, there is no reason to think you have not respected your dad's wishes so far. BiPAP increases comfort and does prolong life but it's comfort care at root. Even w/ morphine, your dad would have a much harder time breathing w/o it but it's not a substitute for respiratory musculature. It treats symptoms of ALS but not the root cause or the disease itself (it's not like chemo for cancer or antibiotics for infection).

No doubt, titrating your dad's morphine to comfort may result in a quicker death. From what you've said about your dad's directives, this reality is in synch with his wishes. I'd imagine your mom is aware of that and will bring it up with you if she wants to.

So from where I sit, you're doing everything your dad wants. Keep standing tall where he wants you to be -- at his side.

Best,
Laurie
 
>So from where I sit, you're doing everything your dad wants. Keep standing tall where he wants you to be -- at his side

well said, Laurie!
 
Dearest Bryan,

The bipap is not going to extend his life like a trache would--perhaps slightly but mainly it will keep him comfortable . you are not going against his wishes--as he would surely let you know if he doesn't want it. I totally agree with Laurie.

you are keeping him comfortable and being strong for him and your mom. you are great in my book!

Please let your mom know that the forum is here for her too and holding both your hands as you enter these last days with him--hugs to your family.
 
Thanks so much for the support everyone. We are definitely taking things a day at a time and we now have such wonderful help with someone tending to his needs from 11:30-5:00 and then someone else from 5:00-10:00. We have tended to him well but there is nothing like a dedicated person to tend to him so we can have more time to take care of the other day to day activites and needs as well as just enjoy our time with him. I definitely felt we have been and are doing the right thing for him I was just struggling slightly with the "life sustaining" part as know he is at peace and ready when the time comes. I definitely educated myself on the difference between bipap and a vent early on but still had to wonder. After being on bipap for the last three days except to eat his color has gotten much better as well as his alertness/awareness. Still not able to whisper more than a word or two and must stay on bipap around the clock but his overall appearance is much healthier.
 
The very fact that you questioned that you were doing the right thing, shows how very much you love him and want to honor his wishes. Be grateful the many of us here are so far away... otherwise, you'd be overwhelmed with the "pats on the back" that we'd offer and you'd get nothing else done. Very well done!

Jim
 
thanks for the update snowman, I'm so glad you have this help coming in.

hugs
 
Snowman, you are doing an excellent job taking care of you dad, and mom during this difficult period. Like the others have said, the BiPAP is more of a comfort thing, not a life-prolonger.
 
you are a good son
 
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