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  1. C

    How much longer

    Thanks for your replies. Yes, mom is on hospice but they can't tell me nor want to commit to any length of time. i was just hoping someone would have experienced my situation. Thanks again.
  2. C

    How much longer

    Hi, my mom has had ALS for 2 years now and she is has refused a feeding tube. She has had a very rapid progession of the disease. She is completely paralyzed except for little head movement. She is just barely getting ensure down 3 times a day but it takes about 1/2 hour to get one bottle...
  3. C

    Anyone else experience this as a caregiver?

    God i needed to read this tonight. i just left my mom's house and mom brother is with her tonight. she is 2 years in and can't move or speak. I feel soooo guilty when i ignore the moaning but it can make you go crazy. my mom's entire personality has changed. its all about her now and when...
  4. C

    A Daughter's Desperation

    HI Rowland's wife. thanks for resonding. do you stay home and take care of your husband? i have someone with my mom everyday during the week but at night and weekends its me, my aunt and my brother. i feel like we need more help. i'm thinking of hiring a private aide. i know it will cost...
  5. C

    A Daughter's Desperation

    Thank you for all your postive feedback.
  6. C

    A Daughter's Desperation

    My mom was diagnosed September 2008 and has rapidly declined. She can no longer move anything except her head, a little. She can no longer speak and is can barely chew. She is 64 and doesn't use the computer so we use letter boards to communicate. I've visited a few caregiver support groups...
    • ceegee
    • Thread
    • advice als back bed brother caregiver desperation diagnosed night support wheelchair work
    • Replies: 9
    • Forum: Current caregivers
  7. C

    Help - Where do PALS sit all day

    I am so frustrated because my mom sits in a recliner all day and night. she may go into the wheelchair for an hour but its not her own so its uncomfortable. What do most PALS do? Are they in bed, wheelchair, recliner? Any insight or stories would be so appreciated. PS. I find this forum...
  8. C

    Help - Going to Bathroom

    My mom can barely stand now and we are having problems getting her on the commode to move her bowels. How do people with ALS go to the bathroom. My mom is 5 8 200 lbs so we now need 2 people on each side to lift to standing position and one person to switch her recliner to the commode and put...
  9. C

    Question on Beds and Sleeping

    My mother is having trouble sleeping so she has been sleepin in a recliner. we now have a hospital bed that can lift her head and legs up and down but she is still complaining that its uncomfortable. I even recently purchased a gel overlay. I was curious what others are doing for sleeping...
  10. C

    A few simple questions

    My mom has been diagnosed for about 6 months now. She is barely moving her legs and sits in a recliner 24 hours a day. She gets up to go the bathroom in the commode next to the chair. We just ordered an eletric chair and hospital bed so she can sleep better. The disease is starting to effect...
    • ceegee
    • Thread
    • bed chair diagnosed hours life meds questions rilutek sleep stiffness support symptom voice
    • Replies: 3
    • Forum: Current caregivers
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