Recent content by Plumeria84

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    Hi Kate, Sorry been a while since you replied to my post but yes, if you have any info at all...

    Hi Kate, Sorry been a while since you replied to my post but yes, if you have any info at all that might be helpful, I'd love to hear from you. [email protected]
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    Caring for a spouse with small kids

    Yeah, unfortunately you really can't hide the disease from them. There will come a time when your husband will require more attention and they'll notice. Like Barbie said, really, the only thing you can do it try to spend some one on one time with them. If you have someone who's able to help...
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    Mom passed last night

    I'm so sorry for your loss ...
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    Any financial support out there !?

    Thanks for your replies. We have used ALS association's respite care program and I should get in touch with them again. It comes up to about 20hrs in a 6 month period, which is nothing, but I guess 2 good nights sleep would be good. I use to have them come out for a few hours once a week but...
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    Any financial support out there !?

    Hi everyone. I haven't been on in a really long time. Just hiding out l and trying to make the best of it. But I've reached my point of exhaustion. Mentally and physically. My question is , is there ANYTHING out there to help people who are dealing with ALS. I just don't understand how...
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    Bad day

    I'm so sorry, but whoever said get ready for these people everywhere is so right. It's unfortunate this happened at church, where of all places you should have received comfort and sympathy for sharing. But these types of people are everywhere (and usually the ones who will do anything for...
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    Respite Coming!

    Oh my gosh Barbie, that is so awesome! I just recently got a break myself after 3 years. PALS brother cared for him for 5 days while I went to Tennessee to visit my sister (brought the little one and my mom along for help watching him) It was so great to get up in the morning and only worry...
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    Piece by piece

    I am so sorry :(
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    Trying to balance kids school, husbands care and work and failing

    I know it may not feel like it but sounds like you have a pretty good routine. I know it's painful to hear someone say they feel neglected when you already feel like you've worn yourself thin trying to make everyone happy. My husband is very techie (?!) too and also spends a good deal of his...
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    8 months

    My thoughts are with you. Big Hug. And how horrid of them to do that to you and taking the names you chose ?! Wow... people are really unbelievable sometimes.
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    Caregiving ... What outsiders need to know

    Lol, LOVE this ! My fav : Chances are we have not had a good night sleep in a while, and thats a good defense for insanity. That's my motto lately....
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    Ever wish ...

    Ever find yourself wishing that you could for even just a moment make someone understand what it TRULY means to be a caregiver for someone with ALS ? On the rare occasion that I end up telling someone I'm not super close to about our situation, you get the tilted face, sad lip "I'm sorry" but...
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    The ugly truth about SSI

    I know, I can't believe you are getting denied - and no reason on top of that. Just ridiculous. We did file in OR so I didn't go through the FL system but wow, I just can't believe that.
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    The ugly truth about SSI

    What the heck ?! How is that even possible. I mean, I thought having the diagnosis of ALS was pretty much an open and shut case when it came to SSI. I HATE dealing with anything like SSI, Medicare, Medicaid - hate it all. Nobody tries to truly help. I'm so sorry, so frustrating.
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    A question about the end

    I'm sorry about your mom. I think these are some of the threads you are referring to, sorry don't know how to share them properly so I'm just posting the links. https://www.alsforums.com/forum/current-caregivers-cals/17399-things-would-have-been-nice-know.html...
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