Old 09-05-2015, 03:35 PM #1 (permalink)
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Default Difficult question

I just heard from my brother that my father thought his bipap wasn't working properly. Turns out it was anxiety and hospice has now told him to increase the usage (he is currently using about 75% of the day), take ativan and take morphine 4 times/day.

I am planning to go next Saturday as of right now due to other updates such as he isn't eating as much anymore, he's not leaving the bedroom for up to 4 hours at a time and his voice is weakening.

I guess the question is do I have enough time to get there based on how things are progressing. Both the aide and RN told my mother yesterday that he is going downhill and they have both only seen him a handful of times.
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Old 09-05-2015, 04:32 PM #2 (permalink)
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Default Re: Difficult question

So sorry Star - still we can't say what will happen with him this week.

If you can just drop everything and go then it would alleviate you worrying all week.
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Old 09-05-2015, 04:57 PM #3 (permalink)
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Default Re: Difficult question

Star, listen to your heart. You don't want to have any regrets! But none of us have a crystal ball, so no way to predict. With ALS, every time we say goodbye (or even goodnight!) it could be the last time. You have really been there for your dad all these months. Hugs.
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Old 09-05-2015, 05:48 PM #4 (permalink)
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Default Re: Difficult question

I spoke with the RN. She had no answers either other than that he's on the lowest dose of morphine and still only taking half of it. She said he breathes normally on the bipAp but resists that as well as anything else that can help because he's mad and frustrated.

My mother is starting to panic so it will help
Knowing I'm coming. My father's sister is also going to come the following week.
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Old 09-05-2015, 07:30 PM #5 (permalink)
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Default Re: Difficult question

Being there will make you feel better from the standpoint of you are seeing him and being supportive of your mom.

I would kindly suggest though that you make a plan for the future. It will help alleviate the stress on you.

Hugs, Steph
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Old 09-05-2015, 09:01 PM #6 (permalink)
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Default Re: Difficult question

Star, what you've said doesn't quite line up, to me. It's not you, it's the narrative.

Ativan isn't going to alleviate anxiety unless he's dosing it continually. It's short-acting. Was he anxious before now? Why is he "mad and frustrated?" And that's not the same as anxious, and the two don't usually present to the same degree in someone in the final stages.

Morphine isn't something that you set and forget, "oh, take it 4x a day." It's supposed to be titrated to the PALS' needs. Your mom should manage it if the hospice more a drive-by than hang-out deal.

And to say to someone, "use the BiPAP more," if there is some reason why they haven't been, is not going to help. If he really needed it and was more comfortable on it, he'd be on it 24/7. Doping him up on a benzo and morphine is going to make his breathing shallower (and is unlikely to help appetite either), but it's not going to fix his BiPAP settings if they are off.

So it is still somewhat likely that the BiPAP is failing to address the full magnitude of his respiratory insufficiency, and someone is perceiving air hunger as anxiety, and he is frustrated because he is hypoxic and/or hypercapnic. And if he still has enough energy to refuse morphine doses, the question is more about what can be done to improve his quality of life, because he's not checking out yet. Which brings us to the BiPAP, nutrition and comfort. Are they checking sats? Machine data to see how much air he's moving? Is he being offered what he wants most to eat, or what someone else thinks he should be eating? What is uncomfortable about getting out of bed?

Anyway, none of this answers your question about stay or go, but the reasons it's unclear where he is in the process, relate to what the major issue right now really is. If you're not talking to hospice directly, this might be the time to start, with some of the questions you might have. You know your dad better than they do, and can bring different insights to their observations, for a more complete interpretation of the facts, and possibly more quality of life for your dad.
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Old 09-05-2015, 10:10 PM #7 (permalink)
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Default Re: Difficult question

Thanks Lori. The anger and frustration is because he still doesn't accept what's happening. I believe the anxiety is from difficulty breathing. The RN gave them the dosing schedule today but he has said he only wants it if he needs it. I understand that taking sporadically isn't going to help much. Tonight he told my mother he's going to get back on his regular bipap schedule tomorrow (meaning using it only at certain times of the day). The nurse said he's trying to rationalize and reason. We know it's not possible for him to only go it a few times a day which makes it so much more heartbreaking
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Old 09-05-2015, 10:41 PM #8 (permalink)
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Default Re: Difficult question

So it never hurts to think about the conversation w/ him and your mom as to helping him frame what he most wants to do before passing, how he wants to go, things like that. Knowing you are on board and will honor his wishes is important for everyone, and might lessen his frustration.

As for the anxiety, I think a common experience at the truly last stage is, there isn't any. So if he is still coming to terms, you probably don't have to worry specifically about the next few days, if that helps.

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Old 09-05-2015, 10:48 PM #9 (permalink)
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Default Re: Difficult question

"As for the anxiety, I think a common experience at the truly last stage is, there isn't any."

That's what I saw, too. My PALS seemed to settle in during the last days. It was like she literally no longer had any cares in this world.
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Old 09-05-2015, 11:07 PM #10 (permalink)
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Default Re: Difficult question

My Chris refused medications except for a little morphine at night (5mg) until his last 5 days of life.

That's when his anxiety (due to his breathing beginning to truly fail) began and for the first time he requested medications.

I titrated the medications according to his anxiety - meaning as soon as he became a little restless again (the only way to observe anxiety as he could not move his body at all and could not speak), I would give him medications, and the amount of medications was slightly increased each day by palliative care advice. By his 3rd last day he could not even have reasoned a response to - would you like some clonazepam or morphine? He was fully aware, but I doubt he was aware of what he needed. I went by gut instinct and twice daily phone calls with palliative care to work out what and how much to give him by watching how he was.

No one was predicting on the Thursday that he would be gone by the Tuesday. I knew he was entering end stage on the Friday morning, but had no idea if that was hours, days or weeks.

I do feel Star that if you were there with your dad, you could help him to articulate how he wants things to be. You could also then help by talking with the hospice on what is happening on a daily basis as you would be observing. If you mum is starting to feel some panic it would be huge to have someone calm there helping out.

I feel that things went so smoothly for Chris in his last days because I felt so calm and could trust my gut instinct on meeting his needs.

Your dad may have weeks left yet, even longer, but if it is suspected he is entering the end stage anything can happen and suddenly. I've noticed that very often PALS reach a kind of tipping point and things can be fast.

Sending you lots of hugs and thoughts of strength as you work out what to do.
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Old 09-06-2015, 08:03 AM #11 (permalink)
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Default Re: Difficult question

Star

Go, as soon as you can go.

My mum died last Thursday morning. She was at home with my Dad. Whilst her fvc had been assessed the week before at 25% (she lost 5% a month), she wasn't yet on Bipap, and had no outwardly obvious breathing issues and no signs of carbon dioxide build up (morning headache etc). I left her house at 3pm last Wednesday - she was sitting out on the patio reading. At 6pm she looked unwell. By 10 pm she was shallow breathing and at times unresponsive. At 4am Thurs morning I was called to come. (I actually said "really?" when my sister said "I think you should come"). She stopped breathing with us holding her hands at 8.30 Thursday morning. I am stunned.

Love to you all

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Old 09-06-2015, 09:01 AM #12 (permalink)
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Default Re: Difficult question

Sorry sorry Sharon. My condolences to you and your family. I've booked my flight for next Saturday. If anything should happen during the week I will change it. I feel I'm the only one who can talk to him about things like what would he like to eat, does he have anything he wants people to know or have. Neither my mother or brother can cope. My brother visits for long hours at a time but doesn't say anything. I know it's his way of being there but I wish someone could better understand what he would like right now.
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Old 09-06-2015, 10:58 PM #13 (permalink)
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Default Re: Difficult question

I am so sorry Sharon. My thoughts are with you and your family. I am so sorry it all happened quickly and you were not given more time. it and is good that you were all there and she was with you and peacefully went with your holding her hand.

Star, your dad and mom are very fortunate that you are coping and your father can talk to you. Everyone takes the grief of watching the progress of their loved ones differently.

Tille, I hope to have your advice for a long time to come. I cannot imagine being as strong, calm and having any gut instinct towards the end of Steve's progression and hope that sooner or later he will come to terms with what is happening to him and myself. We need to talk about decisions while he can talk about them but right now he is not ready to face any of it.
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Old 09-06-2015, 11:03 PM #14 (permalink)
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Default Re: Difficult question

So sorry to hear about your mum, Sharon, but glad you were able to be there for her. Please feel free to post about her on the memorial thread so more people can respond to you.

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Old 09-07-2015, 03:59 AM #15 (permalink)
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Default Re: Difficult question

Scared - it was lucky that Chris did his advanced health directive (living will) very soon after diagnosis and we did discuss end of life stuff then.

Within a short time he really went into depths of FTD (but personality changes were actually a symptom I saw in him months before the bulbar started) and we were not able to talk about anything really after that. So at least I knew what he wanted, and I know what I would want!

For me there was something definite about dropping all the pretence that he was fighting it and all these things were not going to happen that gave me the feeling of calm because I never wanted him to die, but he was in a living hell.

Keep us posted Star xx
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