Hospice Community
66 Members
Avatar universal

Am I doing the right thing?

My 61 yrold mother had surgery to remove a brain tumor. Surgery went well, however to days afterwards she had a massive brain hemorrhage. She was placed in a medically induced coma for about a week. However, since being taken completely off sedation almost a month ago she has yet to stay awake for more than a minute or two and is bedbound. She has a tracheostomy and a feeding tube in her stomach. So she can't talk at all or swallow very well. When is awake for a few minutes she might mouth some words when I ask a question, nod her head yes or no, she reaches for my hand, kind of smiles when we talk to her. But then she falls asleep again for hours and hours. We have decided to bring her home and do hospice care. Because she is no longer responding to medical treatment. But is it the right choice? We picked this option because she has never wanted to spend her days in a nursing home and we don't wanthink to see here there either, also because it's so expensive. She has a wonderful neurosurgeon who has always been very honest and blunt with us, he has told us that she's not progressing the way she should be and that it would be very reasonable for us to put her into hospice care because she has stopped fighting to get better, or we can put her in a nursing home where she may or may not get better... not 100% better because he said she would never be able to live alone again, but she could get to sitting up and assisted living. Though he used the words "cautiously optimistic" and "she would have to fight hard, but I don't see her doing that." Has anyone experiencedown this before? He said it is much easier to go from the hospital to hospice care, but to go from the hospital to the nursing home and then trying to get in to hospice care is much more difficult and she could end up stuck just as she is now for years. Has anyone experiencedown this kind of situation before? I seems to only read stories of people who have terminal cancer or are elderly. My mother does not have a terminal illness and could have years of "life" head of her. I'm just afraid I'm killing her because hospice will not be providing nutrition and hydration. They said I can offer her ice cream or applesauce but that could cause problems with the tracheostomy and swallowing. Are we going to be starving her to death. I'm so confused. She's getting fed at the hospital through the tube, but when she leaves she can't have it. Please help.
1 Responses
Avatar universal
Wherever she goes insist on gtube feeding.  My  daughter food and fluids were stopped by hospice. She was drugged into a coma.  She did not want narcotics, they told me no narcotics no hospicecare!   My daughter wanted to be alert and awake to the end.  They robbed her of that and starved her to death.
Have an Answer?
Didn't find the answer you were looking for?
Ask a question
Popular Resources
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Here’s how your baby’s growing in your body each week.
These common ADD/ADHD myths could already be hurting your child
This article will tell you more about strength training at home, giving you some options that require little to no equipment.
In You Can Prevent a Stroke, Dr. Joshua Yamamoto and Dr. Kristin Thomas help us understand what we can do to prevent a stroke.
Smoking substitute may not provide such a healthy swap, after all.