We have tried baclofen and medical marijuana with no help. It just makes her a zombi. Also, she does massage twice a week. That helps a little bit for a day possibly two. Because of this she screams all night long. She is in late stage dementia. Any advice?
If you haven't, I recommend taking her to a doctor and ask for help.
From your response it doesn't sound like hospice is doing what they are intended to do. Call another. Is she actually on palliative care? Are you her 24/7 caregiver? Who is responsible for administering the meds that hospice provides to keep mom comfortable? Is that person hesitant to do that?
Please tell us why mom does not receive meds for anxiety and pain. Medicare pays for ALL hospice expense, including meds.
Dani, your first post from June may offer you some insight and help.
https://www.agingcare.com/questions/whats-the-difference-between-hospice-and-palliative-care-475515.htm?orderby=oldest
Your post is one that illustrates what Hospice has become in our country. I experienced the change very recently with a dying friend and have posted at best you can now have 2-3 baths from an aid, a once a week brief visit with an RN for vital signs, and a call from clegy and social worker who won't be of much use, as well as that little bottle of morphine. That latter is what you need most now. See to it that you have it. .
She doesn’t have to suffer in pain.
FOR profit or NOT for profit it should not make a difference if the patient is in pain they are not doing their job.
The Nurse should be there 1 time a week not every 2 weeks.
You should have a CNA at least 2 times a week. (although a CNA is not required to be Medicare/Medicaid compliant).
Pain itself is demoralizing and depressing.
I hope you are not afraid that Hospice will hasten her death. What kind of QOL does she have now? I'm sorry to say it sounds profoundly awful.
She may "SAY' she doesn't feel pain, but her behavior states otherwise. A small dose of Morphine with some Ativan may relax her enough so she can move a little without pain. I imagine she IS hurting and doesn't state as such.