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  • How long? Any guesses? Please

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    Old 11-15-2009, 09:10 PM   #1
    anxiousme
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    How long? Any guesses? Please

    My mom was dx in June 09'. Had problems in April with her left hand. Here we are in Novemeber. She lost all use of both arms/hands, can't walk, muscles of the neck and trunk are weaking to the point where she can't sit on her own. Her voice is so soft and failing. Swallowing is starting to go. Breathing heavy at night, mouth opened.

    She has been progressing right from the get go. She has said no to a feeding tube and ventilator. Not sure if we can get a biPap being on Hospice.

    I know nobody likes to make predictions but is she considered late stage ALS. Do you think she only has months considering how fast she has progressed. I want to see her pain and misery end. This is the worst disease. So hard on EVERYBODY involved.

     
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    Old 11-17-2009, 01:29 PM   #2
    kgard
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    Re: How long? Any guesses? Please

    I'm so sorry about your mom. Your mom's situation sounds like my mother's. She was diagnosed in Dec. of '07 & progressed rapidly due to the fact that she had bulbar onset. She lost weight quickly & her ability to speak & swallow declined rapidly. In late April of '08 she developed aspiration pneumonia & passed away on May 6th of '08. It was unbelievable to us that she went so quickly,only 5 mos, when her specialist said that she would most likely have 2-5 years. She too , did not want a feeding tube or ventilator.

     
    Old 11-21-2009, 07:55 PM   #3
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    Re: How long? Any guesses? Please

    Quote:
    Originally Posted by anxiousme View Post
    My mom was dx in June 09'. Had problems in April with her left hand. Here we are in Novemeber. She lost all use of both arms/hands, can't walk, muscles of the neck and trunk are weaking to the point where she can't sit on her own. Her voice is so soft and failing. Swallowing is starting to go. Breathing heavy at night, mouth opened.

    She has been progressing right from the get go. She has said no to a feeding tube and ventilator. Not sure if we can get a biPap being on Hospice.

    I know nobody likes to make predictions but is she considered late stage ALS. Do you think she only has months considering how fast she has progressed. I want to see her pain and misery end. This is the worst disease. So hard on EVERYBODY involved.
    I feel your pain..my mom as well has quickly progressed. Does your mom sleep? My mother doesent sleep not even with prescribed sleep aids. My dad in turn gets none, and he is her primary caregiver. the disease is the worst. my mom totally bedridden tried to have the communication device for her and she wanted nothing to do with it.. i thinks she just wants piece...

     
    Old 11-21-2009, 08:53 PM   #4
    anxiousme
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    Re: How long? Any guesses? Please

    My mom has gone through periods of great sleep, then a period of no sleep. We threw every sleep aid at her. She tried Ambien - got her to sleep but didn't keep her there, next was Phenonbarbitol - 1 week in she broke out in hives-allergic, next was tremazapam - did nothing, next chlorylhexadine - made her "loopy" "loopy". Now we are back to what she used to use pre ALS. 1 tylenol PM, 2 ativan every 4 hours. Put aspercreme on all her achy areas and wrap them with towels ie: arms legs, etc.. Seems to be working. Her sleep is much better again.

    As far as communication device. We don't qualify for any computer type program b/c we are on hospice. The hospice speech therapist put a board together with most used words/needs/pain scale, etc..My mom would have to use a pointer to tell us what she wants. Problem is she can use her hand for the laser pointer. So they rigged up a device on a head piece. Problem is she doesn't have much control with her neck. All in All she could care less. No interest in it. She just wants this misery to end.

    Tracy

     
    Old 12-04-2009, 02:57 PM   #5
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    Re: How long? Any guesses? Please

    I am a live-in caregiver for a woman with ALS and she DOES use a BiPap and is on Hospice. Generally the rule is that patients will be discharged from Hospice if they are using life sustaining equipment. BiPap is considered comfort care. My client wears hers about 23 hours a day and it helps her to get full, deeper breaths. (She is also now on an oxygen supplement.) We went through the same problems in finding the right medication to help her sleep through the night. What ended up working for us is 1MG of Clonazepam at bedtime and if she wakes in the night she gets a "boost" of 0.5MG Lorazepam (in the same family). I hope these two things are helpful to you. ALS is really the worst disease.

     
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