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Need advise on fiancee end of life pain control

Hi everyone,

My fiancee who's 25 is currently dying from NF2 and is almost completely bed bound. I'm her care giver but I need some advise on her pain issues. She's currently taking a huge amount of pain meds. Shes on 15 and 30mg of oxycodone. She takes 6 30mg oxycodone every 3 hours for a total daily dose of 54 tablets. She also takes 4-6 15mg oxycodone every 4 hours for a maxium daily dose of 32 tablets.

My question is, we are running into insurance issues with the rolling cap and therefore, we aren't able to get her refills on time once we hit that rolling cap. It usually happens every 5th or 6th refill for her meds. So her pain doctor put her on Oxymorphone 10mg 4x every 6 hours for a maximum daily dose of 18 tablets until he rolling cap resets. However, she is still in a lot of discomfort and its getting to the point where her pain doctor wants her to get palliative care.

However, my fiancee wants to stay home and be able to die in the apartment then go to a hospice to die. So my question is, do we need to get a special palliative nurse so she can take over prescribing meds for my fiancee. If that's true then how does it exactly work? Do they come over and prescribe meds for her, do they bring meds with them?

I'm just confused on how it exactly works. Right now her pain doctor can only right 7-10 day supplies of her current meds because of the amount of pills shes getting. Shes getting over 500+ pills every 10 days and she isnt able to write a script for more than 500 pills due to the DEA issues. However, she said a palliative care nurse would have more power in terms of being able to prescribe whatever my fiancee needs. I guess I'm just trying to understand how this all works and making sure my fiancee is comfortable.

Also, my fiancee is extremely stubborn and refuses to take liquid medicine through an IV, she will only take  tablets in a capsule as she isnt able to swallow the chalk like texture of pills.

Lastly, if anyone has experience from a situation like this, please give me some advise as this is all new to me.

Thank you
1 Responses
Avatar universal
I'm so very sorry you and your fiance are going through this.
Yes, you might want to try a nurse because she can help your fiance with her meds as far as sorting them out for the day and she should be able to get as many meds as your fiance needs.
Things have changed so much lately with the FDA getting involved in our pain control. It's not fair, especially in your fiances case.
Have you checked to see if your insurance will cover a nurse?
I had a dear friend who was at the end of his life from cancer. He had a nurse coming in around 3 times a week to make sure his meds were all in order and all in the weekly container.
I really hope you and your fiance can get the help you need.I completely understand why she would want to spend the rest of her life in her own home.  
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