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New member
Jan 7, 2007
I'm one of the caregivers for my youngest daughter. I have terminal COPD which is a sissy disease compared to ALS. Over the last few years we have been in a race to see who passes first.
She was diagnosed with ALS about 6 years ago, of course it has steadily progressed. She now has limited use of one hand and and can still be understood when she speaks.
She has Medicare and is at the point where she would like to know about home Hospice and how to apply through Medicare.
She has a living will etc., no tube feeding or other artificial means of support etc.
Any help or information would be appreciated.

Thank you


Hello Joe. Yikes! Two awful diseases in the same family! My heart goes out to you both! Does your daughter see a social worker at the ALS clinic? I think the process for getting Hospice might vary from state to state, but I believe it starts with a referral from the medical folks. Of course there is also a chance the answer is contained in a former thread. To find out, type in "Hospice" in the search feature at the top of this screen.

good luck and keep us informed! Regards, Cindy
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Hi Joe..My husband started home hospice through Medicare this October. First your physician writes up that you probably have less than 6 months to live.. .But many people with ALS are in hospice for much longer than that and the doctor can re-certify I guess, so dont let that scare you away. I would directly look into what hopsice programs are in your area and contact them for details too. One thing to know is that once you are in hospice, Medicare doesnt like to buy expensive equipment such as a speech device and power chairs, so be sur e to check those details and have all your big equipment bought before hospice starts. We were in just a home health program for a year before the hopsice. Medicare covered home visits for physical therapy, speech, nurse's aides, maybe taht will suite you until she is more advanced.
But there is much more info on line about this too..good luck to your family...
Beth (CALS to Shannon, diagnoseded 8/04 at age 40, w/chair 11/05, feeding tube 3/06, Bipap and hospice 10/06)
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