end of life

  1. Clearwater AL

    End of life hospice nurse. Not easy to accept but...

    End of life nurse… there may be 'better' ways to go, says an end of life hospice care expert. Julie McFadden, a hospice nurse in California, revealed on a podcast... "To me, there are a couple diseases that are the worst." The first cause she mentioned was ALS (amyotrophic lateral schlerosis)...
  2. Kristina1

    disagreement with my husband/cals about end of life decisions

    This is mainly a vent.. We are still working on discussions for writing up an advanced directive. My doctor is referring us to a palliative care doctor to help facilitate those discussions and make final decisions. While talking about this I told my husband when the time comes I DO want a...
  3. NothingButLove

    My universe is most likely coming to an end...

    I really, really wanted to be an active member on this forum. Around September of last year, my wife has wanted me by her side all the time. The depression, stress and physical fatigue brings me down. The lack of sleep just destroys me. I just couldn't find the time... I've seen posts saying...
    • NothingButLove
    • Thread
    • arm back cals cough assist crying death depressed depression end of life fatigue feeding feeding tube food life morphine pain problem problems sleep speech stress swallow tongue vent wanted
    • Replies: 13
    • Forum: Current caregivers
  4. lgelb

    Rant or something

    "Showing the reality of ALS" in a PSA campaign is a nice idea, but how real is it to portray PALS who have survived 10, 14 and 15 years so far (only ~20% live >5y), respectively, two of whom have trachs, rarely used in the US? Following each vignette with the hyperbolic tagline about having...
    • lgelb
    • Thread
    • als alsa back cals death end of life ice life pain power rant
    • Replies: 8
    • Forum: Past caregivers
  5. T

    I need to know the signs

    My sister was diagnosed with ALS 4/2015. She is at the end and I need to know the signs and what to look for. I need to know how much more time I have left with her. She is currently on a bipap machine, she cannot breath on her own anymore. That has been since August 2017. Monday her chest was...
    • tiabye
    • Thread
    • als bipap communication coughing diagnosed end of life eyes frustrated life night respiratory signs of death
    • Replies: 13
    • Forum: Current caregivers
  6. Tedstehr

    FTD and ALS

    My father-in-law died of FTD/ALS shortly after my diagnosis of ALS. We knew he had FTD, but had no idea about the ALS until I started researching the disease. When I found this sub forum, I strongly suspected what had happened. My father-in-law, Yan, was an incredible man. He was a GP and...
    • Tedstehr
    • Thread
    • ability als cals diagnosis dying end of life father ftd life locked in medicine pain quality of life speech swallowing
    • Replies: 8
    • Forum: ALS and frontotemporal dementia
  7. worrieddaughter77

    Some updates and decisions

    My dad is declining very fast. As new changes happening I would like to ask you for an advice/comments on the following points: Fatigue: My dad is very weak. He almost can't walk or stand up from a chair anymore. Taking him to the Dr or clinic is such a draining task on him. Just getting an...
    • worrieddaughter77
    • Thread
    • advice back brother chair clinic communication cough assist dad end of life foot frustrated health heart immediately life meals problem quality of life shower swelling symptoms vent worried worry
    • Replies: 10
    • Forum: General discussion about ALS/MND
  8. L

    Doctors opinions on tracheostomy?

    My husband gets seen by the VA but they sent us to UT Southwestern to the pulmonologist to get a sleep study and orders for a cough assist and Trilogy. They are also the ones who are going to do the PEG tube. We had our first appointment there a couple of days ago. Towards the end of our...
    • Lscott71
    • Thread
    • cough assist denial end of life ftd kids life peg quality of life rant scared sleep tracheostomy trilogy ventilator wrong
    • Replies: 13
    • Forum: General discussion about ALS/MND
  9. S

    Hard Situation - MIL w/ ALS

    So here's my story, My MIL was diagnosed in Nov 2015 after around 6 months of trying to figure out why her foot and leg were having pain/fatigue. She was 61. The first year wasn't too bad but use of both her legs was eventually gone and she was in a wheelchair by the end of year one. Now, 7...
    • SamSam
    • Thread
    • als arm diagnosed eating electric wheelchair end of life fatigue feeding feeding tube foot life pain story support tracheotomy voice weight loss wheelchair work worried worry young
    • Replies: 5
    • Forum: General discussion about ALS/MND
  10. D

    New report on California aid in dying law

    According to the Cal Dept. of Public Health, up to 20 ALS patients have taken their own lives under California's "aid in dying" law after six months. I do not oppose the general idea of permitting physicians to assist the suicide of terminally ill patients who would otherwise suffer...
    • Dave K
    • Thread
    • advocate als choking clinical death dying early end of life family family member fear free health hearing hospice information life medical nurses palliative care problems respiratory respiratory failure sleep support
    • Replies: 19
    • Forum: General discussion about ALS/MND
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