Recent content by Tracy500

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    Gone tonight

    My pals has gone to be with god tonight. And I didn't understand or listen very well to the calls who've lost their pals. And I feel sick. I am only 33, he was fine a midnight and I went to bed was supposed to be up at 1am for morphine dose but something woke me straight up at 1240am and I flew...
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    Helpless

    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...
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    Can't sleep

    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.
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    Can't sleep

    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...
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    Can't sleep

    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...
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    We are close.

    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...
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    Illness again

    Today has been a rough day, the last 2 days he has only been able to want 1.5 cans of milk. That's only 12 oz all day. He refuses any more. He has been coughing a lot today, refuses couch assist. He has mostly slept all day to the point where I would stare at him making sure he is breathing. He...
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    We are close.

    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...
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    We are close.

    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...
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    Frustrated with PALs learning he's not in control, I am.

    No marriage relationship anymore. It's just me taking care of him the best that I can. I've been sick for a few days too, wear masks anytime I'm around him to make sure. Sanitize house and all.
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    How can I not be a monster during the night?

    I feel the same, I thought that I as the only person being treated so poorly.,so the ALS causes these pals to be so mean! I guess there is nobody else to take it out on but me since I'm his only caregiver. I know he needs stuff done, but why can't he be nicer about it?? I hate this disease so...
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    Why does it have to be especially hard sometimes

    My hubby has ALS bad and he is mean to me also. He refused the test for ftd I believe he has it thou. He swears at me when I don't do what he wants. Like he cannot and isn't supp to eat, as he will choke and throw up all over himself if he even tried a bite of anything. Also now we battle the...
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    Completely Overwelmingly Sad

    I agree family wants to talk and bark up ordered but won't do the dirty work.
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    Frustrated with PALs learning he's not in control, I am.

    I'm finally able to log on again. Was having trouble but now I can. Anyway my hubby has to use the bedpan now to. He gets mad, but I cannot physically lift him anymore. He is too week. Legs collapse and I have been injured myself yesterday trying to lift him. I said no more, for safety he needs...
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    Poop

    I'm finally able to log on again. Was having trouble but now I can. Anyway my hubby has to use the bedpan now to. He gets mad, but I cannot physically lift him anymore. He is too week. Legs collapse and I have been injured myself yesterday trying to lift him. I said no more, for safety he needs...
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