My Mom has Corticobasal Syndrome and is super stiff. She turns her heads to the left and back where she is looking at the ceiling. Any advice?

I hope to high heaven if I get as bad as your poor mom, mu kids will get Hospice on board and drug me into zombie land.

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.

Contact another Hospice.
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).

Look into hiring another hospice organization. Obviously, the provider that you have isn’t doing the job.

She doesn’t have to suffer in pain.

Hospice care and the "good meds" at this time would be my advice. There is no reason to suffer in this manner. Hospice is all about pain relief. It is time to request consult with the RN about pain.
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. .

Dani, is your hospice a non-profit?
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

Zombie or in pain. What would you choose if you were on hospice, dying and in pain? I think i would rather be a zombie than be awake all the time in pain. Is screaming the way she talks and communicates or is the screaming partly because of the pain too?

Oh my goodness. I am so sorry for her and for you. Since she is on hospice I can't understand why she does not have more medication. Usually morphine and ativan are available as needed. With stiff muscles she may well be in pain. What does her doctor suggest? Have you advised the hospice nurses about her screaming at night?

Have you had her evaluated for hospice? Check with doc about reducing med dosages. Keep in mind the objective is to help her relax and reduce pain so she is comfortable. If she is screaming she needs to be taking something.

Dan, your mom's problem sounds so horrible. I am not familiar with this medical condition. How do you both get any rest? Is she screaming due to pain?

If you haven't, I recommend taking her to a doctor and ask for help.