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    My young spouse has ALS, whats next?

    Hi VL so you "do not choose to govern the circumstances of my husband's death by phone instruction and ....do not choose panic over peace". Well I did not know my husband's death was actually to be that day. We had a whole year of close calls or more really. I get your message and it is a...
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    My young spouse has ALS, whats next?

    Hi Mike and VL, I can see what you are both saying. In our case though we were sort of indirectly told that it was not good to get the ambulance, that it would be invasive etc and the more peaceful pathway was palliative. Also my husband did not want to die in hospital but at home so I wanted...
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    My young spouse has ALS, whats next?

    Well this is hard to write, it was so traumatic..you may not want to read on First probable diagnosis Jan 2009. Weakness started in the hands then arms and his breathing was the first thing I think affected. By April he was on the BiPAP for night use. By April/May 2010 he was on it 24/7 but...
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    BiPAP and drowning.

    Hi, is the saliva thin or thick? I am wondering if there is alot of thin saliva or is it getting claggy and stuck in his throat and can't quite clear it? There are drugs to dry secretions but if it is getting claggy some of the things we tried were paw paw (papaya) tablets to chew, drinking...
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    My beloved Larry passed away.

    I lost my husband in September. A few weeks later a friend took me away for a few days and I had just one session with this counsellor. She said to me that 'he didn't leave you and you didn't leave him'. She said that you never left each other and that it was only his passing that has...
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    Fabrications

    Hi Roderick, What you wrote struck a chord with me as I was unfairly labelled. Some people called me a very good advocate for Shane but some called me "a very difficult woman" or worse. I had to really push for services in some cases. I am in the process now that Shane has passed in...
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    Hospice - what does he need first?

    A hoist was an essential piece of equipment for us, Cheers Chris
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    Home Health Nurse!

    Glad you rang and told the agency and they would do something about it. I had a palliative care (hospice) nurse visit and I told her that my husband had sat up all night long on the side of the bed trying to clear the secretions in his throat, and I had sat with him. I told her because I had...
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    My daughter passed

    I am so sorry for your loss. I am sure you being with her all throughout until the end was a big comfort to her. My thoughts are with you and your family Chris
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    Passing of beloved husband

    Thankyou everyone for all your kind words and support. Funny thing is, when I think of him now I see his face as it was in the early days. He wore a bipap mask for over a year and a half but I never remember him in it. MISS I like your line how your husband "lived" with ALS. That is what we...
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