Please bear with the long post, but I feel like I need to give the back story. My mom has been through a lot. She has severe COPD. In the summer of 2023 she was placed on hospice while at a skilled nursing facility. Due to unforeseen circumstances she had to switch facilities. The events that followed the next 10 days at the second facility almost killed her. The staff at the facility stated they weren’t comfortable with the amount of medication hospice prescribed. They decided to cut her Ativan dose in half and take her completely off of her morphine for over a week. It sent her into severe withdrawal with full on psychosis. She was hitting herself, believed a man in her head was telling her to hurt herself. Ds believed this all stemmed from the withdrawal. She had never hallucinated before. She spent 5 days in an acute care hospital and then was placed in a hospice house. The hospice house was amazing. They adjusted all her medication and she was able to graduate off of hospice and into the second nursing home. That was in January. She was doing great. When she entered the nursing home she was still on Ativan. I expressed my concern with administration about her meds and the importance of not taking them away from her, they agreed. So, the end of August, without talking to family, they screwed with her meds again. They again cut her Ativan in half, and made two other major changes all within just a couple of weeks. So, guess what happened? It sent her into a full blown withdrawal, psychotic episode again. This time she wasn’t violent to herself, but she was convinced a demon was in her head telling her she was going to hell. She was terrified. I’m a RN and work at a hospital and have never seen anything like it. She was sent to an inpatient psychiatric facility for 3 weeks to get it figured out. She was doing better. They were giving her meds to stop the hallucinations and Klonopin for her withdrawals and anxiety. Then the nursing home made them take her off the Klonopin before they would take her back. So now she’s getting nothing for anxiety. I’m upset because she only went there because of their incompetence in the first place! She was on Ativan before she went. I’m just so sick about this whole situation. I know SNFs have to be careful because of state regulations, but I also know that they can give their patients what they need with proper documentation. I have a meeting to discuss the events of the last few weeks with administration scheduled for next week. I don’t want her to go through this again. She deserves quality of life and basic respect.
I’d also tell admin you want to be notified of any medication changes same day the new order is written . ( I have dealt with facilities that automatically did this in the beginning , but would slack off as time went by ). This way if you don’t agree you ask them to have the doctor call you to discuss.
I would check weekly with the charge nurse what Mom’s meds are , in case they forget to tell you of a change.
Go to or call into every care meeting ,
I’m assuming you have POA.
If you have scrubbs wear them to the meeting. My daughter is an RN and anytime I called her into a facility concerning my parents, she wore her scrubs. Got immediate respect and listened to her. I could have said the same thing, but they listened to her.
As an RN you know whatever diagnosis/lack of one involving any dementia may be a factor, there is also the severe COPD and the chronic lack of oxygen to your mom's brain.
As an RN myself I am very confused about the way "Hospice" has figured in all this. Because to be honest, with this end of life care, there would be no reason EVER to withdraw a medication such as ativan or MS. I am utterly flummoxed. But I am also puzzled by transfers to hospital, when really, on Hospice, the norm is to ADD all the medications needed to get to a state of rest and peace?
I say, as an old retired RN, on Forum for about 5 years now, that the most difficult thing in the world is coming up with a drug or a drug COCKTAIL (and that's what you're looking at) that both WORKS and will CONTINUE to work (because they never do). It's impossible for LTCs to adequately look after and address the needs of these patients without one-on-one care, and that's non-existant/not sustainable financially.
I wish I had an answer for you. I know as an RN you already KNOW all I have suggested, and remain without an answer; I'm afraid this is all slipping through the cracks to land on the basement floor of "not everything can be fixed".
I hope for your sake, for the misery your mom endures and you stand witness to, that this can be fixed. But I feel as hopeless after reading what you wrote as I know you did when you started it.
I wish you luck and hope you'll update us; welcome you to Forum and hope you'll stay and help us answer folks.
I don't know if this would work but I'd turn really fierce about all this.
Good luck.