Unread 03-09-2012, 01:04 PM #1 (permalink)
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Default Dealing with a family dealing with ALS

1) Is frustration among family members who take care of someone with (late stage) ALS common? Sometimes to the point of yelling and crying?

2) I don't quite know what others go through when a family member has ALS. Bouts of depression can go on for days and affect me as well. I try to be there to comfort but it never quite feels like I can do enough. What else can I do?

3) Do people with ALS who rely on family for everything ever grow resentful of them?

4) The person I know has been living with ALS for at least 6 years. Recently, they have been in and out of the hospital due to feeding tube complications. Should I prepare myself?

I don't mean to sound insensitive and if I have, I apologize. Thanks for any help.
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Unread 03-09-2012, 01:25 PM #2 (permalink)
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Default Re: Dealing with a family dealing with ALS

1) Yes. Most of the literature at some point refers to ALS as a "family disease"

2) You're already doing it. You can't fix it. You CAN be there to listen. And try to not take it on as your issue too... that will only hasten the downward spiral.

3) Some do. Some don't. Depends on the personality of the person involved, the circumstances, etc.

4) Don't borrow trouble. Many of us use "it is what it is" as our motto. Glen never used a feeding tube so I can't specifically speak to that but if your friend is getting care for it I wouldn't panic.

You didn't sound insensitive to me.. just caring.
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Unread 03-09-2012, 01:38 PM #3 (permalink)
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Default Re: Dealing with a family dealing with ALS

Thanks for replying Katie. You actually brought another question to mind. I don't mean to pry or make you uncomfortable but I didn't know that those afflicted with ALS could live without a feeding tube. Like I said I'm still learning.
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Unread 03-09-2012, 02:03 PM #4 (permalink)
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Default Re: Dealing with a family dealing with ALS

ALS is such a variable disease with people losing different abilities at different times.
It was suggested to me to get a feeding tube, but I decided to stop working and concentrate on eating good and keeping my weight up.
I may have to get one later, but this is a personal choice and some opt to never have one.
The average ALS patient lives 2 to 5 years, but many have slow progression( like me).
And with technology (feeding tubes, vents, etc.) many live longer.
I know they have the support of friends like you who are willing to learn and be there for them. I hope that they are in contact with their local ALS chapter too.
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Unread 03-09-2012, 02:22 PM #5 (permalink)
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Default Re: Dealing with a family dealing with ALS

I'm not sure if they are in contact with their local ALS chapter. Not sure how she'd get to meetings. The problem is only one family member is trained enough to taker her out of the house and even then it is quite the chore. He's also the one who works normal hours, has the insurance that pays for the care and is 60 years old. I know how to operate her chair, drive the van, give her suction and wipes but I wouldn't know what to do if all of a sudden her trach started leaking. I do try to go out and help carry equipment when they do. Thanks for responding by the way.
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Unread 03-09-2012, 03:54 PM #6 (permalink)
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Default Re: Dealing with a family dealing with ALS

What a wonderful friend you are! Can she qualify for Social Security Disability/Medicare? If so, that might take some pressure off of the family member that works, in that more income will be coming into the household and he might be able to work less hours. Is he caring for her all by himself?

He can at least check with the ALSA to see about respite care. Maybe they need a break from each other...
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