I need to know the signs

[tiabye]

My sister was diagnosed with ALS 4/2015. She is at the end and I need to know the signs and what to look for. I need to know how much more time I have left with her.
She is currently on a bipap machine, she cannot breath on her own anymore. That has been since August 2017. Monday her chest was very rumbly with coughing - like she has something in there and couldn't get it up. Her Respiratory Therapist came that night and said he could hear it, didn't even need to get close to hear it. Said that there was a lot of liquid in her lungs and there isn't anything we can really do about it. They changed her mask to a full face mask so that it would have less leakage.
Yesterday she started to sound much better and he said it was because of the mask. But then she slept all day and she is still sleeping all day today. Her eyes its like she is struggling to keep them open.
Last night I also realized that her pee is getting to be a darker brown, so I think her kidneys are shutting down. How long once that happens does she have?
Has anyone been through this type of end of life situations? Its so frustrating cause no one will tell us how much time she has left. They said they just don't know!
She can't tell us anything, no communication except when she does pay attention to us she can shake her head no or yes, not much but a little.
Any thing you can tell me of what you went through and what to expect next will really help me and my mom.
We are so stressed and frustrated and don't know when to tell my brothers to come down from PA to see her. Or do they wait??

anything...
Thank you!

 

[Atsugi]

Tiabye, you're very near.

Everybody is different, and the body can do amazing things, but this is my experience:

My wife lasted only a few days after her urine turned brown and chunky.
Let her sleep. Invite her family to hold her hand.

You have a hospice nurse and morphine nearby, right?

 

[lgelb]

Yes, call your brothers to fly in, meanwhile play your sister's music, etc. and tell her your brothers are coming to be with her. When your brothers come, tell her you love her and she can rest now.

I don't think you will need a hospice nurse or morphine, if you don't have those things -- your family is what your sister needs now.

--Laurie

 

[wishmobbing]

Hey tiaby! Wishing your sister and your whole family a lot of strength. It's good you came here, lots of knowledgeable folks around (not me tough) and we're all here for you.

 

[tiabye]

Thank you very much. Her urine is looking better today so not sure what that means! But still the out take is not good.
We do not have hospice as the 4 companies we have gone to will not take her while she is on her Bipap machine and we are not taking her off of that. ALS clinic is supposed to get with them on why since they have patients on hospice that are on their bipap machines.
We do have the morphine though, just not enough it seems. Getting that has been a real chore, hence why we wanted hospice.
I am trying to get my family down here asap.
Any other advise you can give would be greatly appreciated.
Thank you!

 

[codyclan]

Tiabye,
Is getting the morphine into her a chore or was it actually getting the morphine? Good luck with the hospice. You may not need them, but we did find that toward the end the morphine pump, which was provided by hospice was much easier. Also, we did get hospice to accept him on the Bipap. They wanted to change it to their machine, but I kept calling till I found a group that would accept the one he was on.
Sending you virtual hugs and prayers and strength in the coming days.
Tracy

 

[Miav123]

My father lasted 5 days after he stopped eating and drinking. He was very peaceful, but we kept him comfortable with morphine.

Lots of hugs to you and your family.

 

[tiabye]

Its a chore to get the morphine prescription from the doctor as they have to mail it and they are in Tampa. The to find a pharmacy that actually has enough to fill it, or even has it at all. We are still waiting for them to fill the one that my mom took in on Monday!

My sister is on a feeding tube so we are still giving her fluids and her food.

Her pulse dropped to 64 yesterday afternoon but is back up to 70 now.

My brother is coming in tomorrow so I am glad about that.

It has been a roller coaster ride this week, One day she seems like she is going to be ok for a little longer and then in the afternoon her pulse drops and I freak out thinking this is it. I don't know what to tell my family anymore as they live in PA and we are in FL. Do they come now or wait. I can't have a bunch of people here for weeks just waiting.... But then they want to be here for her final days.
Its so confusing and hard to think about.

Thank you all for helping me!

 

[codyclan]

I have a caveat--first of all, whatever you decide is right for the situation. You can only do what you think is best in the moment, so don't torture yourself too much. That said, if they are relying on your recommendation, I would tell them to come. She may be waiting for that. If it gets to be too much, they can head back, but I would say come. I faced the same situation with my husband and decided to tell them to come down. As soon as everyone was there, he seemed to relax. He passed soon after.
I am so sorry. This is an awful situation and I wish you all peace.
Virtual hugs,
Tracy

 

[LeelaaB]

I am so sorry and can totally relate since my mom just passed on the 13th. During the last few hours, her blood pressure dropped to 70/40 and her heart rate was 110. That was in the final hours. Not sure if you have a way to measure these things but that is a telltale sign in many cases. We also gave her Ativan near the end since she seemed restless. Her resps were at about 40. I know every case is different but I just thought I’d share my experience since it was recent and sounds similar to yours. Keep talking to her, let her know you are all ok. I wish you as much strength as I can through this.

 

[lgelb]

Very sorry to hear about your mom, Leelaa. Feel free to start a new "In Memoriam" thread. Wishing you and your family much peace and strength.

Best,
Laurie

 

[Atsugi]

Tiabye, look for a "compounding" pharmacy.

I would bring in the family now. Even if this is not her final hours, they will all feel better having a final chance to hold her hand.

My Dad, I think, worked very hard to stay alive until each of us had visited. Then, when he knew he had brought the family together, he passed away peacefully.

 

[tiabye]

Thank you all. Last week was a roller coaster. Friday during the day she seemed back to "normal". But then Friday night she had a lot of mucus, so a lot of coughing and her pulse was up to 136. We got it out and calmed her down. It took a few hours but got her back to 79 rate.
Then Saturday she was good. We have a foam piece around her head for the mask so that it doesn't hurt her so much. So we decided to change that and instead of trying to keep her mask on we let her breath on her own. We took about 20-25 min to get it all done and she did great. Her oxygen level never went below 90!I am like why do we have her on this mask 24/7 if she can do ok on her own?! I am not sure but my brother did come in Saturday and my Aunt tomorrow.
I feel like they came for nothing. Except to see her again maybe.
She sleeps almost all day. Her urine is a very clear yellow again and the out take is better then it was last week. Her pulse is around 80 all the time the past couple of days.
She is back to ignoring me and not smiling. Its so hard no being able to communicate with her. She can't use the Tobii anymore cause her eyes are not strong enough and when you ask her a question she hardly ever answers you! Its like she is already gone sometimes. Part of me wants her to just go to sleep and let it be over but the selfish part of me needs her to stick around.
I have a feeling a lot of you know what I mean.
Leelaa I am very sorry about your mom. I am not sure how I will react as no one except my grandparents have passed away. I hope that you are doing ok. I wish I could help you more but I am in no place right now.
I guess we need to just keep taking it day by day!
Thank you everyone!!

 

[LeelaaB]

You are doing an amazing job!! I understand when you say a part of you just wants to be done but a bigger part of you just doesn’t want to say goodbye. I’m glad she seems to have settled. When my mom was getting mucus in her throat (her lungs were always clear) they gave us a pill to put under her tongue to stop the excess secretions. That helped a lot but that was not her lungs, just her throat. She is very lucky to have a sister to take such good care of her.
I wish you strength through this journey.

Leelaa