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Tracy500

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Since last Thursday, a week ago, my pals has started a new process. Sleeping way more, can only tolerate 3 cans of formula via g-tube only. Been using morphine in the day now as well and not just at night. He has stayed in bed all day 2 times this week, and other days only got in his PWC for a few hours only to go back to his bed. He had been vomiting on himself to over last weekend and Monday. The hospice thinks his stomach is shrinking and can only tolerate little formula. When he is up he is mostly sleeping in and out throughout the entire day. He just decided to be a DNR as on Monday, hospice had chaplain come Tuesday, RN has come twice this week, and she wanted to make sure we have lots of morphine. So my question is, are we that close to death? I know there is no timeline for ALS, or when God decides to take him. But this is real now. But sometimes he will get a spurt of energy and be alert and then I'm like, ok maybe he's gonna be fine now? And then today seemed like no he's not. Anyone else who has lost a pals know what I mean? It's been almost 2.5 yrs since dx. The hospital RN and MD said they wouldn't be surprised if he was gone by the end of the year, but I feel like it will be before Halloween. I can just feel it, as much as I fight it, I feel it.
 

scaredwifetx

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I am so very sorry Tracy. I do not know about the pattern towards the end but can feel the grief in your words. I don't have any words of wisdom but wanted to let you know I am here and will be praying for you both. I wish I could reach out, touch your hand and give you a hug.
 

affected

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While we can't say how long he has, it does seem like the disease has taken a turn around a corner.

Sometimes PALS go down like this and then come back to a degree for some time, but that's not the norm.

I hope now you can find some peace with him, and he with himself. xx
 

Tracy500

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The sad thing is that last Thursday I found peace with myself, how I am with him, and with the disease. I accepted it. And then All of a sudden he took a turn for the worse. I feel is that what God wanted, for me to accept all this, and just be nicer about it all to him. And I felt relief knowing that I can do this, and just take it day by day. But now it seems we are at the end since my realization of it all.
 

scaredwifetx

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Peace does come like waves. It is in and out for a while. You think you are excepting and most likely you are but its still hard. Realizing the end may be near is hard even if you expect it and are ok with it. Spending time with him and helping him to be at ease is the most important thing you can do for peace of mind. I was with my mother until her last breath and I know she was ready to fly.
 

Atsugi

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I couple of clues about an impending death. Note that I am no expert at all. This is just what I've seen. n=2.
Feet get gray and cold.
Urine gets brownish and cloudy.
He may simply feel it in his heart.
 

lgelb

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Tracy, I am glad you are finding some measure of peace. Helping him do/say whatever he wants and to avoid whatever he doesn't will help the journey end better for you both, whenever that end is. From what you say, it could well be soon if that is his wish.

Best,
Laurie
 

Narrowminded

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Tracy - I am praying for both of you. Sending my hugs as well. As much as we struggle at times, this part will still be hard. At least it seems that way, we have not reached that part yet. Just know that after all the struggles, you gave him a peaceful send off, whenever that may come and may that give you peace as well.

Hugs,

Sue
 

gooseberry

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I agree with Mike. We experienced these cold blue feet and cloudy brown urine. Steve also got a very yellowish hue to him due to his liver shutting down.

I am so sorry Tracy. This is a very difficult time
 

texastc

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I know when my Tracy was in the last days...it seemed as though she couldnt leave til the last person got mentally ready...it happened to be her sister. It took a couple of more weeks after everyone else had made peace with it. When it happened...sister accepted it...she was gone shortly after. Like Tillie, no one knows the hour...but it does seem he has turned a corner. Glad for the meds...makes him comfortable and free of most anxiety. That is good in my opinion. Sorry you have to do this...it is so very hard. Prayers for you and the others in your lives.

tc
 

JennyC

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I agree with TC, in my personal life experience and in my work experience I have seen a lot of people hold on until they know everyone else will be okay. For my pop it was me kicking everyone out of the room who was begging him to stay, while they were out of the room I told him that if he had to go then he should go, it was okay and everyone would be okay in time. For my family friend Dawn, her husband staying it was okay to go wasn't enough, it was only after he told her how he would be okay (with therapy and friends etc) that she let go.

I'm sorry and in a way not sorry that you are at the end of this with your love. Sorry because oh how it hurts to lose the one that you love, it leaves a gaping hole that never quite patches up, but at the same time this disease is so awful and when the end comes we know there is no more suffering for our PALS. I'm sure you are feeling many emotions right now...
 

scaredwifetx

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TC and Jenny you are so right. My mother hung on the last couple of days. She had my children, my sis and her best friend here. It was getting rough with all of them in the room. I played her favorite song, had everyone kiss her goodbye and then asked everyone to leave the room. I put my arms under her neck and whispered in her ear that we were all going to be ok and that she could leave the pain behind. Told her my dad was waiting for her and she passed peacefully.

It will be hard to let go and your heart will never be the same. I pray that you can find peace together. I am so sorry for the pain you are feeling. There are no words for this kind of grief. I am hoping when its Steve's time that I can find the words and strength to help him to leave this beast behind.
 

affected

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Tracy how are things there now?
 

Dave K

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This is the same situation we are facing: sleeping most of the time interspersed with ever decreasing spells of energy and alertness. Like a fluorescent lamp that flickers on and off. It is stressful knowing any day now could be her last, yet also knowing she could continue living for weeks or even months. I have to work full time so she has health coverage, and the hardest thing for me is knowing I can't be with her during her most alert and happy time, which is now in the mid to late morning. If I only knew how long she has left, I would take a family leave of absence for the last several weeks. So I just try to spend as much time with her as I can, and I'm very, very happy we are able to keep her comfortable. Her smiles brighten everyone's spirits, and I wish I didn't have to be away from her so much in order to make those smiles possible.
 

Tracy500

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Joined
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Messages
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CALS
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06/2014
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City
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Tonight is odd, the last 3 days he has been on morphine every 3 hours or more. And about an hour ago he asked me for a hug? And so I did. Then he said, "I love you". Weird, we argue mostly or joke around and when he did that I got nervous. He asked for some Ativan. Now he seems better. Watching the college football game. But been sleeping in and out like usual for last few weeks. But he has very bad shortness of breath today. 1st day ever that he has wanted the bipap on continuously. And then he has been coughing for a week, lungs were clear as of Wednesday when hospice was here. But tonight he coughed up a lot and it was hard to suction it out as his mouth clamps down so quick I can't do it well. I asked him if. Should call the on call RN hospice? He said no. I asked if he wanted anyone here, again no. He just wants me and the kids here.
 
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