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...
With the hospice we use, the social worker is the patient advocate and whenever we have a concern she resolves it within days. The CNA and nurse have also advocated for certain equipment and medications for my FIL as well. For example, we didn’t like a wheelchair hospice provided and a nurse went to the agency and insisted we get a different kind of chair for him and they did. If Medicaid covers it they should provide it, it is only paperwork for the agency.
Okay, now I understand your father is at your daughter’s home. LilFarmer is correct. You have the right to choose another hospice agency and find one that *will* treat him for issues other than the terminal illness. You can also look into a palliative care home service (you get doctor visits, nurse visits, hospital bed, potty chair, etc.) that will treat him and pause hospice if you like the palliative care service better.
If he is on Medicaid, you usually get caregivers, and these caregivers are not tied to being on hospice, but provided as needed whether on hospice or not. I had to hire caregivers privately, as my Dad was not on Medicaid.
How would your father be cared for if he went back to the trailer in the boonies? Medicaid does not provide 24/7 caregivers in my state (maybe they do in yours), and with no family member present ... how could that be managed? Even with 24/7 paid caregivers, it could be a problem as they don’t always show up, and with no family member around, well, could be risky and big headaches for you having to go out there all the time. And do any good hospices or other care services cover that area?
As much as we want to honor our loved ones’ wishes, sometimes it is not possible. It’s hard for someone with dementia to understand that, but at the same time, a person with dementia may not be able to make wise decisions and we have to make hard choices for them. Again, my heart goes out to you and your family. I know this is hard!