There are good and bad hospice agencies - you can fire the one you have and get one on the same page as you!
My FIL (end stage dementia) at our home, on hospice for almost 6 months, they have provided equipment, supplies, a weekly nurse visit, CNA, chaplain, etc. He is only on meds that we want him on, no morphine or pain meds as they are not needed. They provided a wonderful hospital bed with alternating air mattress to prevent bed sores, hoyer lift, gerichair, portable toilet, shower chair, ramps…
They have treated every issue that has come up, skin tears, UTIs, infections, reflux, sleep issues, etc. They sent him to the hospital once for stitches. We didn’t like the first nurse and they agreed to only send a nurse that we like and she is amazing.
He has clearly stated in his end of life wishes that he does not want extraordinary measures, a DNR, so a heart attack or stroke or other major medical emergency we will not treat because those were his stated wishes. However, our agency was clear from day one if we ever wanted something treated, we could pause hospice, have it treated, and reinstate him after. It happens quite a lot as I’ve learned from a dementia board I’m on.
Thank you for sharing this. Yes we are in the same situation. Except for the “Comfort” means as quick as possible. I sent an email Friday, and if I do not get an answer by tonight we are going shopping. :)
A post from a friend in our own forum...
“If you ever feel shorted at a hospital or need help, make your next mission to find that hospital’s Patient Advocate. This is a position created at just about every hospital to make sure patients interests are protected, and the position is vested with immense power. It will often be a very small girl, very pleasant, nice smile, and with one call to a doctor and a slightly stern voice, she will be able to get the entire staff of the hospital trembling in fear, and desperate to do whatever you want. Send her boss a letter afterward, telling them how great she was.”
My reply back...
I talked with them many times over he years. They are like Human Resources in a large corporation. The hospital still signs their paycheck...
Hospice does not have patient advocates. Because the patient is already dead in their minds. Dead people do not require advocacy...