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Jan 27, 2008
St Louis
My mom got diagnosed with ALS (even though our family thinks it isn't) on May 20th. If you read my post "Worst Nightmare Come True" you can read my story of how they arrived at ALS. So, the doc said we should go with hospice since they provide more with our insurance. I'd like to vent that they SUCK! They are all doom and gloom and attibute every little thing she has to ALS. She suddenly had trouble breathing when she got pneumonia in the hospital May 11th, fluid collected around her lungs AND she has a pulmonary emboli as well as a blood clot in her left arm pit. No wonder the woman can't breathe! Hospice is like "oh, it's because of ALS." She was congested from using her BiPAP plus the allergies in Missouri right now are bad. She had itchy eyes, stuffy nose and sore sinuses. What does hospice say? "Oh, it's because of ALS." They are also on our butts to sign an advanced directive and do not want her to go on a trach OR to be "saved". They just want her to die it seems like. I wanted the hospice doc to do an X-ray or CT scan of her lungs/chest cavity and he said it would cause too much trauma for mom and that they'd hold off, but he did put her on 4 new drugs! I'm sorry I just had to vent! Next thing, they'll attribute a hangnail to ALS or something!
Hi Jessica,

I know this is all confusing and it sounds like your situation or your mom's is more confusing than usual. Hospice is not given because it has better benefits than insurance, but because a person is dying and has less than 6 months to live. The person and their loved ones need the support to let the sick person die as comfortable as possible. It is palative care. The job of hospice is not to help the person get better or sustain them while they have more tests or see doctors.

I am so sorry you are going through all this. Is there any chance you could sit with the social worker or a doctor and find out more and ask your questions. If you need a second opinion your mom will have to come off of hospice so the insurance can pay for it. Hospice WILL NOT, it is not their function. To learn more about hospice you may want to do a search on this forum. Please know you are in my prayers. Sincerely, Peg
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