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ccjjcc

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where it's green
see other thread about his trach things....General Discussion About ALS/MND - ALS/MND Support Group Forums It's been kind of a nightmare for him, just the whole thing, with
the bipap not working, then getting the trach and then not venting him right away. It's
been an ordeal and I hurt for him and I love him and am trying to be here.

But it has been really hard. If I go home, I feel bad that I'm not here (at ICU) looking
over him. When I'm here I'm glad I'm here for him. Although I can't get any sleep at
night. (we're in a big room with a chair/bed).

My job picked this week to schedule me more hours than I can work, because "they" are
on vacations or off for New Year's eve and day. Just load me right up. And they have
been without any compassion at all. I let my boss know last week I might not be able
to work all the hours he had me scheduled for, depending on my brother's situation, and
he seemed fine with it. Then we get into this week and he's wanting to know ahead of
time. How can I know ahead of time when he's going to be in distress? Or moved back
to the nursing home? So I'm going to gut it thru the next few days and be over here too
and not get much sleep. It ticks me off. I feel like quitting the job.

Meanwhile, my brother is a 24 hour job as far as constantly needing attention. If it isn't
one thing it's another. I feel bad for him but he's so negative and angry. He gets mad to the point where he is fighting against the trach and insisting on it going his way. I'm trying to make it better but it doesn't help.

Mainly, though, I'm just mad about work not having any sympathy at or offering any
work-arounds for me over the next week.
make it better, but I can't seem to, and I'm trying.
 
I understand where you are coming from. all of it is so very stressful. even once there is a routine down, it still wears a person out. I take it you are the only one that is there supporting him? If so, i would suggest finding other people to help, if possible.
Your brother is going thru hell right now- you know that, so its understandable that he be angry and negative. but yourself in his shoes.
i do this alot with my PALS, and it helps to calm me down. I mean really stop, and truly sit and ponder what it would be like. Sometimes that short time of making yourself concentrate on something else will help all by itself.
Also, another thing that i do, is always alway ALWAYS remember that its the disease thats causing the problems, not the PALS. I do my very best to remember that and to try to keep them seperate. They may have ALS, but they are not ALS. I try to get mad at the disease and not my PALS.
This all being said, there are still times that really stink and seem impossible. Unfortunately, this is part of the process. Try to find things that can take your mind off the situation. And keep coming here, as we all understand.
Hope this has helped some and I hope things get better for the two of you. Happy New Year
 
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