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he is on therapeutic parenteral nutrition daily, visited by home health nurse 2x a week.We have Blue Cross/Blue Shield,and he is on Medicare too. I take care of everything except for few minutes nurse visit or when he is admitted in the hospital. I deal with his daily care,from colostomy care,anal fistula care,nephrostomy care,personal care,hygiene....because I quit my job,I thought I should be compensated in someway......We refuse hospice care definitely....

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I know this is after the fact, but I am so curious why anyone would quit their job prior to researching if they can get paid to be a caregiver. Unfortunately, vast majority of relatives who are caregivers are not paid, unless the patient can pay from their own pocket.

Check with your local Agency on Aging to see what is available to help you out. And if your spouse can qualify for Medicaid, then that program could send over an Aide to help you out a few hours a week. Some States have "Cash & Counseling" but one would need to qualify for said programs. With budget cuts, some States have a long waiting list.

Why did your refuse Hospice Care? Is your husband not ready for that? The Hospice groups can be very helpful.
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