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  • Don't be afraid of the feeding tube. It sounds frightening, but can be proactive move to avoid aspiration. patient can still eat for pleasure through the mouth, tube feed for nutrition...avoid weight loss.

    I think the best thing you can do is pull together all resources asap. ALS is now fast-tracked with Medicare (good for hospitalization/some skilled services at home..NOT private duty caregiving). Unless she has long-term care policy, you pay out of pocket. Once Medicare approved, (took us a month), can get her social security disability.

    Two important opportunities to be aware of, pending deadlines:
    1. If she still has employer-provided insurance, see if she has a long-term disability policy;
    2. If she has a life insurance policy, you can sell it for 40-60 percent of the benefit. They are formally called viaticals, and used to be controversial. But more common today, regulated. It can help by selling that asset for a chunk of cash to pay for her comfort and care.
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