Helpless

[Tracy500]

I am going out of my mind, he is basically sleeping coma-tose since Sunday, I don't know what to do. I can't leave him alone, hospice will come everyday now. He is 24hour care now. I don't know what to do. He opens his eyes sometimes only to close them. Has morphine when needed, and uses bipap continuously. How long will this last? I feel like I'm going insane. His heart rate and bp have dropped significantly today since he has been super high with both since Wednesday last week. Help? How long does this last before he takes his last breath?

 

[Nikki J]

I am sorry. There is no way to tell you. Hospice might pick up on cues but people are different. It sounds very soon. Is he perhaps waiting for someone to come say goodbye? It happens sometimes. Sometimes they need you to say I love you I will miss you but we will be ok and you can go if you are ready. And sometimes they wait until they are alone. We are with you and holding your hand. Just be with him, talk to him, touch him. That is what he needs now

 

[scaredwifetx]

Tracy, I can't tell you how long this will go on. I did go through this with my mother in Feb although it was cancer. It was brutal for me. I just want to let you know you are in my thoughts. I cant give medical advice since I haven't been through this with my PAL yet but there are a few here that can offer you more advice. My heart is breaking for you Tracy.

 

[Narrowminded]

Tracy I'm continuing to send hugs and prayers.

Sue

 

[Nuts]

Tracy, this continues to be a vicious ride for you--I am so sorry. Please try to get some rest when hospice is there--you need it. We will be here---keep posting.

Becky

 

[Aussiemndcarer]

Oh Tracy,
I'm sending strength to you from across the miles. Hang in there. I can feel your distress from here and all I can do is send hugs your way.

 

[Erika]

I'm thinking of you Tracy. Sending you hugs and praying for you and your family.
-Erika

 

[affected]

Another one holding your hand Tracy.

Is he receiving any nutrition or fluids now? This can affect how long they can linger, but still I'm afraid everyone is so different it is very hard to say.

However it won't go on for months, probably not even weeks, so try to focus on an hour at a time and helping him out with love. When hospice come, are you able to do a little something for yourself - have a shower, a quiet coffee, a walk out to the garden - any little thing?

We certainly do feel helpless in the face of this monster xxxx

 

[soonerwife]

So sorry you are struggling Tracy! Sending hugs and prayers your way!

 

[peacecomesfromwithin]

My mom is in a similar stage right now. I keep wondering the same things.

 

[patoyeah]

Tracy, do u know if he wants to go, or if he wants to continue living?

Sorry,

Pat

 

[SyncOrSwym]

Tracy, I wish I had answers, but all I can do is relate what happened with my sister last month. She didn't have ALS, but she was in real bad shape with liver and kidney problems and infections. Anyway, when the hospital said they could do nothing more for her, they sent her to a hospice (a really nice place) and said they wouldn't be surprised if she were to die in the next day or two, and she was taken off the feeding tube. Unfortunately, it took about a week and a half, and for most of that time Lori was totally out of it, although she did come out for a few seconds a couple of times.

She had a lot of visitors, and one hospice member said that she might be holding on because of all of the action going on around her, although we couldn't see any obvious reactions. Anyway, after about a week and a half, she passed away quietly.

I'm still not sure whether I should post this 'cause I don't know if it will help, but I wanted you to know that it might take a few days -- but if he's asleep, he's hopefully in no pain and is resting comfortably.

Hoping for the best for both of you,
Ed

 

[Margesmn]

Sending prayers for both of you Tracy.

 

[Lkaibel]

Thoughts and prayers Tracy.

 

[affected]

Thinking of you here too Tracy, much love and holding your hand xx