Recent content by The Sass

  1. T

    Hello

    I am so sorry for your situation. I have been there too and the best advice I could offer is to talk to your doctors to see if your mom is eligible for hospice. They are so much support and help. Look and find help where ever you can. It is a long road and cannot be traveled alone. Sass
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    VACATIONING with ALS - HELP we have never done it before

    Vacation Debby, My Mom was the one with ALS and we too vacationed every year at the Alabama beach where they had lived for years. I went to the website VRBO which is Vacation Rentals By Owner and found many great choices. What we found worked best for us was a beachfront condo. It had a...
  3. T

    When does it get easier

    Hi all, I and my dad (81) was my mom's caregiver. She passed away Feb. 14th. Though we knew she was going down we nor hospice knew it would be so soon. We knew 5 minutes before she was gone she was going. Anyway, it has been a month and I just cannot seem to find any this grief getting...
  4. T

    how fast does pbp set in

    stay ahead of the game As you know PBP is a quick mover once diagnosised. My mom passed away at age 77 only 19 months being diagnosed. I would say they best thing we did for her is to always stay one step ahead of anticipating her needs and with getting the right equipment just before she...
  5. T

    Keeping eyes open

    My mom is in final stages of ALS and I have noticed she seems to have trouble keeping eye lids up. Is this something that is common? I never thought about eyelids being affected.
  6. T

    question about morphine?

    my 2 cents Just want to give my 2 cents worth on morphine. My mom is in the last stages of Bulbar onset als and recieves hospice. She is on a bipap 24-7. Morphie was made available to her from hospice but she decides when she wants it. She has no pain but it is given to relax her breathing...
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    cough assist?

    I would suggest when you get a cough assist machine to also get a suction machine. It will be very helpful to remove those secretions coughed up.
  8. T

    I'm a Stranger, Here, Myself...

    Sorrowful, For some wonderful help and support contact MDA. They are a great source of information and assistance. sass
  9. T

    What to do

    Greetings Caregivers, I need advice from someone who is or has experienced caring for someone bedridden. My mother is in what we believe is final stages of ALS. She is on bipap 24-7. She is on a feeding tube and is unable to speak. She can however write. She cannot walk but has been able...
  10. T

    I seem to care more than he does

    My mom lost her voice after 5 months being diagnosed. There are some things I wish I had known that would have helped. She does have a Dynavox4 but the voices are somewhat odd sounding. I would have helped had we known about voice banking and could have had her voice to program in. Please...
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    pay ranges

    I am in Texas and we are thinking about getting someone to sit with my mom a couple of days a week to help us out. My mom is on hospice but we just need that little extra help. Does anyone know what the per hour rate ranges?
  12. T

    When is Trach needed

    Can anyone tell me what level your FVAC is when the doctor usually recommends a trach?
  13. T

    Time

    Hello all, I hope to word this so it does not sound morbid but uncertainty and not knowing are tormenters to me. My Mom was diag. 7/06 with bulbar onset als. Besides having this she is on in years, 77. She got a peg 2/07 and can no longer eat, she has not spoken since 12/06 and can barely...
  14. T

    Digestion Problems

    Hi, I am a CALS and my mother has had control issues also. Seems to have gotten worse as time goes by. She does have a peg. What we have found that works without going in the other direction is a small dosage of OTC anti diahrea med. She takes 1/2 tsp in the mornings. We get this in liquid...
  15. T

    What's yours?

    My moms was the first sign along with weight loss. My Mom's symptoms began to show in May of 2006. Diagnosed in July 2006. She is 77 so I feel like her age has also worked against her. She completely lost her voice in December and had feeding tube put in the last of February. Sass
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