Mom had a major stroke at the end of August 2012. She is 88. Since the stroke she has not been allowed food or drink by mouth, although I believe she can swallow. But her life is going downhill. She in in a nursing home, can barely make sense, cannot move anything but her right arm, has recently had at least 1 more minor stroke, & recently her left shoulder (the paralyzed one) popped out of its socket while they were bathing her. (They put it back in.)
I think it is time to consider the quality of what remains of her life. She's supposed to get a swallow test next week, but she may not pass it because they require her to sit in a regular wheelchair for 20 minutes. The hospice nurse told me I could request that the doctor allow Mom food and drink, even if she doesn't pass the swallow test. Like I said, I think she can swallow, but if she can't, how long does she have before aspirating? Is aspiration like pneumonia? Or does it happen the moment she swallows something? In other words, if I give her a drink of water, and it goes down the wrong way, have I just murdered my own mother?
Has anyone had any experience taking a parent off of the feeding tube, no matter what?
The feeding tube is intended to minimize the risks of something getting into the lungs. I don't know if they told you, but even saliva can be swallowed wrong and it is full of bacteria. So a feeding tube is not a 100% guarantee against aspirational pneumonia.
After a swallowing test in 2003 my husband was recommended to have a feeding tube. We said No Thanks. In the following 9 years he had aspirational pneumonia twice. After another test last year he was advised to follow a special soft diet. Again we said No Thanks. We weighed the risks compared to quality of life issues. The decisions we made are not the right decisions for everyone. But everyone does have the right, in my opinion, to factor in quality of life as they make decisions.
What you are facing is very, very difficult decision-making. My heart goes out to you.