Can't sleep

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Tracy500

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I just can't sleep. After he had me lay with him holding his hand, said I love you 3 times. Kept looking at me...now he is finally asleep so I went to my bed so I can rest. (He has a small hospital bed and I can't sleep in it). But I worry will tonight be the night he passes in his sleep? Does that even happen? Will the bipap alarm? I want to be at his side, I keep getting up to check in on him. I can't sleep, and have a huge headache from all the worries I have.
 

faithandlove

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The company that furnishes nearly all of my equipment for ALS, through the ALS clinic, got a hospital bed for me through Medicare and one for my husband so he can be next to me (no charge). I believe each clinic has an ALS closet. I bought a 2" memory foam mattress topper for both us through Amazon, and it is so comfortable. My husband loves his new bed and being near me in case I need him.

Maybe your clinic or association will do that for you.

Hugs,
Deb
 

Erika

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Hi Tracy,

I'm not as experienced as some of these awesome CALS here are. I'm not even sure what to say, I just want you to know I'm thinking and praying for you and your husband. Sending you a hug and hoping you're able to get some rest.

-Erika
 

lgelb

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Tracy,
It's possible but not likely that he will pass during sleep. Most likely you would hear something, and you need sleep, too. You can make sure the apnea alarm and low pressure alarms are on if you are worried. Tomorrow, if you don't have a bed next to his, I'm sure you can work something out.
 

affected

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In those last 4 days when I knew Chris was actively dying I slept in the lounge room with him on his recliner chair. I say slept, but it was more I would doze off for an hour or so, check on him, doze off again. Day and night. Yep it was tiring but I couldn't leave the room and sleep in my bed.

Chris had been sleeping apart from me for about 6 months full time by then, and had not slept a full night in our bed since a month or so after diagnosis because he had too much pain in our bed. (he was gone only 11 months after diagnosis).

I would say, just let yourself do what you feel you need to do.

PALS often wait for the room to be empty or for you to be asleep many people say.
Many PALS do pass in their sleep, either suddenly or in a slow active decline.

My Chris passed around 2am. Around 11pm the night before I used a homeopathic remedy prescribed for him to help alleviate the fear of dying. I mixed it with water and washed his face and hands with it so it could be absorbed through the skin and I told him many things of my love for him and my sorrow at this monster attacking him. I told him that he was in a serious state and he was not going to come out of it and bounce back and that it was OK to let go.

I kind of walked and paced, and lay on the recliner and held his hand and talked to him on and off the next few hours. His breathing began to slow (rather than the rapid very shallow breathing of the past few days) and he did not acknowledge me, but he simply slipped away very peacefully.

He was asleep, or at least not actually conscious, when he passed. He never had bipap (he never wanted one), but even if he had a bipap then he would have passed.

So all I am saying is, that if you would feel better being with him, can you rig up something to rest one, even if you are not sleeping properly, that is in the room with him?

I would like you to know that I am holding your hand. The beautiful people here, and in another CALS group I am a member of, held my hand all the way through. Just keep giving him comfort care, let him know you love him too, and do what feels right.

I kept beautiful candles burning and lovely music playing, I found the atmosphere this created helped us both feel very peaceful, even if the worst thing was happening, there was a lot of peace.

I hope you can create a place of peace for both of you as you work through this. I hope I can be looked after in such a way when it is my time to go.
 

Tracy500

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Thank you, to the ones, no I cannot get a bed In the room, I had to move bed out b/c of all the equipment. But I was thinking I may drag one of the kids twin mattress on the floor at night and then they can sleep in my bed. He did fine thru the night, he woke up this am during his morning meds via peg tube. I asked how he slept, he nodded, which meant good. But who knows what today will bring. His family is coming over for football game today, but they are loud ppl. How do I tell them he needs quiet without bein rude.
 

Nuts

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Tracy, does your husband watch the game with the family members who come over? Does he enjoy the noisy time?

If yes, then sometimes we just have to give them what they want. If not, if he indicates that he won't join them and wants to rest, tell them before they arrive.

If he wants them there but wants rest, well, you can only explain the situation and then let things be as he wishes.

This is so hard. I'm so sorry for what you are going through.

The twin mattress sounds like a fine idea. Then you can move it out or stand it up against the wall out of the way during the day.
 

affected

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Glad the night went OK Tracy.

Yep I meant get anything in there to rest on, that sounds like a good solution for you.

It's hard sometimes to explain what our PALS need, but I would try telling them gently that he has not been sleeping well and really needs a visit but he also needs things not to get to excited. If they don't listen, you may just have to watch him and then respond accordingly. If it's too much for him, then offending them may become the lesser evil as you are the one who has to deal with the after effects if it overwhelms or really exhausts him. (well of course he has to deal with that too).

I hope the visit goes well.
 

Narrowminded

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Tracy please know I am praying for you. However long this stage lasts, I know it won't be easy. Tillie has given you so many good suggestions, I hope to remember them when my turn comes. I too am holding your hand and hugging you long distance. We are all here for you.

Hugs,

Sue
 

sunandsea

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Tracy, I just wanted to let you know I'm thinking of you and praying for you and your husband. It sounds like you are trying to do all you can to help him as you go through these days and nights. Hoping you feel the love and support of so many who understand, have been there, or know that someday they, too, will be faced with the same. Hugs to you and your family.
 

lgelb

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If you can fit a mattress, you can fit a folding cot -- better for your body to sleep in a frame.
 

Tracy500

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He has been in like a coma state since 2:00pm today, he opens his eyes if I tap him but to only close them again. When he looks at family today he was lookin past them or behind them? Is he seeing ppl who aren't here? We asked him if he sees someone and he won't answer us.
 

Barbie

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tracy I am so sorry. how beautiful though that he knows he is loved. I think my husband knew it was coming the day he died. I knew it was close but not that it would actually happen. don't worry about what he sees, remember that the last sense to go is the sense of hearing so keep talking and telling him you love him, and tell him it is ok to go, and that you will be ok.

hugs
 

vltsra

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Dear Tracy, I'm sorry, I know you have had a difficult time with your PALS. You are there to comfort him, and I believe he knows that. I hope that you will find peace.

V
 

scaredwifetx

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Tracy, I am so sorry that you are having a difficult time. You are a wonderful CALS and know your PALS knows that. I so wish no one had to go through this with a loved one. We are all here for you. Hugs!
 
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