Recent content by Weltschmerz

  1. Weltschmerz

    Toileting help/Sling advice

    I can only add to what @Diane H has said: the "buttless pants" that my wife had were a real help. There were joggers/sweatpants and also slacks, very discrete when sitting in the recliner but then easy open from in the hoist/sling. We were told that certain slings were available to be able to...
  2. Weltschmerz

    Regret and flashbacks

    Thanks to you all for these replies. Jonico, your response moved me to tears. I have to say: remembering how much was out of control certainly puts regret/guilt in its place a bit. I have a great desire to have spent more time just sitting and being together. I regret not watching more of our...
  3. Weltschmerz

    Regret and flashbacks

    I’m coming up to the three month mark since my wife passed away, with only limited eye use still available at that stage. While friends have been helpful and I’ve benefitted a lot from long chats and walks, every now and then I have flashbacks to awful situations we found ourselves in when I was...
  4. Weltschmerz

    Haunted

    It is strange to find myself in your company here after a year or so of clicking into the "current caregivers" section. I really appreciate the resource on this forum because I have been feeling quite alienated from more general/generic grief information and advice. I feel like I was grieving...
  5. Weltschmerz

    Pals losing eye movement now

    Hi Donna, I found that the eye movement left and right lasted a little longer than up and down. Have you tried various types of movement? As for the eyes closing, I think the drops must be really important because my wife often had a sort of white goop in her eyes, almost like a precursor to...
  6. Weltschmerz

    Note of passing

    Thanks to everyone for their messages of support. We have certainly had a difficult couple of years but I know this forum was invaluable to me (and thus also helpful to my wife). I am in awe of all the shared experience and tips/suggestions. Really, the only somewhat-positive thing I can say...
  7. Weltschmerz

    Note of passing

    With sadness, checking in to say my wife passed away on Friday, 5 February. At the stage of losing all eye (eyeball/eyelid) muscle function, a limit had unfortunately been reached. After deciding not to insist on ventilation, the end came somewhat suddenly, in a way. On the other hand, after 2...
  8. Weltschmerz

    Impending sense of doom

    Thanks, Laurie and Jon. I definitely gave these lots of thought earlier today and will continue to do so. Nothing is imminent (as far as any of us can tell) but the end is unfortunately definitely in sight. We never did manage to get my wife out of a care home. Lots of factors, and I’m not sure...
  9. Weltschmerz

    Impending sense of doom

    Hi all, With thanks to all of those who have helped throughout the last while, an update to say that my wife's condition has continued to deteriorate all year. We are now approaching an end state, partly because oxygen saturation is beginning to drop substantially on each turn for hygiene...
  10. Weltschmerz

    Communication for Fully Paralyzed Patients

    Lgelb, thanks for that link. My wife is fully trached and vented, and has begun to lose the ability to blink. She can roll her eyes (eyeball) up and down to indicate yes/no or any binary we come up with, but she doesn’t seem to blink at all. It’s becoming even more difficult than I would have...
  11. Weltschmerz

    Life post-trach: mental health?

    Thanks for these links and tips. I hadn’t seen those computers before with the eye tracking integrated into it. I really thought this eye gaze along the bottom was sufficiently fancy. To be honest, some of this is tech but some of it is tiredness, too, I think. I’ll follow up with our assisted...
  12. Weltschmerz

    Life post-trach: mental health?

    Hi Jon, I am sorry I didn’t see this until now - no notification or anything. My wife has the support of the assisted communication technology people in the NHS here. They came out for a visit and have adapted settings and left a picture card and an alphabet sheet thing. To be honest I wasn’t...
  13. Weltschmerz

    Life post-trach: mental health?

    Today was a great news day for us both; I was able to take in our cat who my wife hadn’t seen since being hospitalised in January. Bittersweet because of course that’s the first time post-trach ie without talking, but it was a lovely afternoon. I think tiredness is a huge factor. It’s...
  14. Weltschmerz

    Life post-trach: mental health?

    Just a quick interim update to say that with the help of a specialist ALS nurse (a valuable resource here) I’ve managed to line up some new things. Firstly just moving my wife’s bed to face different things, and possibly taking her in it down the hall and to the residents’ lounge for a change of...
  15. Weltschmerz

    Life post-trach: mental health?

    Thanks for these suggestions. Apparently the bed in the care home is likely too wide to go down the corridor - or at least to pass through the doors to the garden area. (It’s the only facility in our area that can accommodate someone trached and vented, apparently.) I did take on board the...
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