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  • Bobsgirl - I came across that they are suggesting Hospice. Went to a support group meeting last night and just heard some info. I don't know how New York works, but in Michigan I have heard from my group support meetings that you need to get your pwc (power wheel chair) before hospice comes in. It has something to do with Medicare paying for it before and not after hospice. Perhaps you can check with your doctor or ALS clinic about this before you contact hospice. Or maybe hospice can tell you when you do speak with them. Good luck. This is all so overwhelming at times.
    To post a msg in the caregiver forum do this: Click on the "ALS/MND Support Group Forums" Scroll down to the "Support for Caregivers of ALS (CALS)"
    Click on "Current Caregivers" Once there, in the upper left you will see a blue bar with a little letter and old fashioned pen and ink. Click that and you can start a new "thread." Then others can respond to your thread or questions. Hope that helps.
    How do you know his breathing is good? You say his pulse is irregular? I would suggest you pose this question to the general forum. As for hospice, normally, for example cancer, the 6 month rule would apply. Like I said, ALS is different. The level of care is daunting. Hospice may be able to provide more care than he is receiving at this time. I don't know. It seems to differ in each state and with what type of insurance coverage one has.
    Did you read my visitor msg? Let me know. Then I will respond further. If you got my msg on your profile page, click on the conversation link in the lower right hand corner of my msg. It will say "View Conversation"
    Sorry about your fiance. If he is being seen or managed by an ALS Clinic and they say it is time for hospice, they mean it. That doesn't necessarily mean gloom and doom. It may be more of a relief in the caregiving aspect. If his mom can have help, that is wonderful! With ALS, it will not matter how long they have left (the 6 months thing). Hospice can keep renewing care, as ALS is so unpredictable. The hospice team may be able to get some troublesome symptoms under control, such as breathing issues and feedings, then release him from their care. I personally think it is great that his mom will get such help! Most do not receive such. If I can answer any questions for you, I will try.
    Hello, Im new here tonight. My fiance was diagnosed with ALS in Sept.2010. My question for you all is - have you heard of Drs/ nurses changing ones care to Hospice too soon, or of people improving & no longer needing the Hospice care. His ALS nurse said yesterday she felt hes ready for Hospice, I didnt think he was doing nearly that poorly at this stage. It was a total shock for myself & his Mom. He is in the Albany NY area, Im close to Boston Mass. & would love to get him to at least be seen by an ALS Dr. of Mass. General. I guess its just wishful thinking that a Dr. there may help him, but I know that hospital was just chosen as best in the US. Thanks & looking forward to advice/ suggestions from you all ! :)

    Also if anyone knows of an excellent ALS Dr. at Mass. Gen. in Boston - plz say ..Thanks !
    Im not sure I did this post correctly, very new here, & it looks more like Ive sent a message to myself. Any help or advice is really welcomed !
    Hello, Im new here tonight. My fiance was diagnosed with ALS in Sept.2010. My question for you all is - have you heard of Drs/ nurses changing ones care to Hospice too soon, or of people improving & no longer needing the Hospice care. His ALS nurse said yesterday she felt hes ready for Hospice, I didnt think he was doing nearly that poorly at this stage. It was a total shock for myself & his Mom. He is in the Albany NY area, Im close to Boston Mass. & would love to get him to at least be seen by an ALS Dr. of Mass. General. I guess its just wishful thinking that a Dr. there may help him, but I know that hospital was just chosen as best in the US. Thanks & looking forward to advice/ suggestions from you all ! :)
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