Recent content by CSElliott

  1. C

    He died & it was horrible.

    It's amazing how in the end, this grief really is about how I've lost the love of my life and not as much about the way I lost him or the tremendous amount of caregiving I did to keep him alive as long as possible. But...the way I lost him is not OK either and I think it's given me PTSD. He was...
    • CSElliott
    • Thread
    • advice bipap breathing bulbar bulbar als caregiver caregiving chair crying death drugs dying eyes family grief heart hope hospice hours life love sad sleep twitching wanted wrist
    • Replies: 22
    • Forum: In memory of
  2. C

    Advice with intimacy

    Missy I completely understand missing the connection, boy do I understand. I wish there was a better way to say...my heart goes out to you completely. You will find that you're still connected, even in the smallest ways. You won't lose it. I'm at the end now, today maybe, maybe tomorrow. We...
  3. C

    Advice with intimacy

    Hi Missy. You're brave enough to ask this question so I'm going to be brave enough to respond. You're in a situation where, depending on your personality, you might have to do things that you're not comfortable doing or that you've been too shy to do before. It's totally understandable since a...
  4. C

    Believing in false hope

    I have no problem admitting that I have hopes too, false or otherwise - I find them easier to live with. But I also know that I'm losing my fiance a little bit more every day and I'm going to suffer a total loss, probably relatively soon. It's just that if I think about that or focus on it, I...
  5. C

    relaxation??? hell no!!!

    Gooseberry....how I can relate to this!! I had to call and handle several months of interaction with mortgage/debt collectors about a deed and lieu on a house that I didn't even own with him. There is something about making phone calls to these people with their crappy microphones that I have to...
  6. C

    Suction machine is weak?

    My PALS (bulbar palsy, PEG, no food or drink by mouth) got his Devilbiss suction machine a few months ago, tried it a couple of times and decided spitting was more efficient. He's been spitting/wiping ever since and struggling with thick, pasty phlegm however he can. We had the technician come...
    • CSElliott
    • Thread
    • advice bulbar choking devilbiss dry mouth finger food meds muscles peg phlegm power scared suction supplements switch turkey worried wrong
    • Replies: 3
    • Forum: Current caregivers
  7. C

    The question of 'how is pALS?'

    This is such a great topic and question. I agree, rather than a general question of how he is I would prefer "How is he today?" or "Anything new going on?". If it's a close person, they know what's generally going on so I'd rather they just ask how his spirits are on that day. Things change...
See more
Back
Top