Today I expect to sign up with the third hospice company in 24 hours.
I say hospice company, not hospice service, because they are making big bucks off this work via Medicare.
When I sign all the paperwork and talk to the MD, RN, LVN, social worker, chaplain, and home health aides, I will stress one point: DO NOT KILL HER WITHOUT MY PERMISSION.
In other words, do not order any medications or stop any foods or liquids without talking to me first.
The first hospice was Roze Room, which I hired a week ago today. I fired them yesterday.
Roze Room as in sweetness and light, Rest here in this rose-scented room while we kill you.
They were doing fine until they sent an order to stop all milk products, the only form of nourishment Mom has taken in significant amounts during the last week. She just pecks at her solid foods but drinks full glasses of milk or Ensure.
Next I called Vitas, highly recommended by the Filipino caregivers and the Indian med nurse who form the front line in the battle against death when people end up in the Reminiscence Neighborhood. (In this brave new world, we pretend that the Alzheimer's, Lewy Body, and vascular dementia patients can reminisce.)
Vitas as in We are giving you life, not death.
But at 5:30 pm the geriatrics internist called me and said she doesn't refer to Vitas. She's heard bad things about it. She refers only to Roze Room or Skirball.
So after six phone calls and a few faxes, starting to make appointments and get the papers signed with Vitas, I called and cancelled with Vitas.
Dr. Rosen's office faxed a referral to Skirball. I expect to enter negotiations with them today--starting over where I began a week ago: intake papers, medical histories to every conceivable level of person who might visit, appointments, etc.
Skirball as in the name of the Jewish philanthropist who also endowed the Skirball Cultural Center on Mulholland Drive a few miles from here.
I hope it's not Skirball as in Ha ha, got you now, screwball.
I will tell each person I speak to from this agency, DO NOT KILL HER WITHOUT MY PERMISSION.
Do not order morphine without telling me first.
Do not stop her milk products without telling me first.
Call me when a doctor visits--I'm only five minutes away. I will be there. I'd like to consult with any visiting doctor--to give information and receive input.
Call me as many times a day as you want, whenever anybody visits. Just stay in touch with me.
2 comments:
Oh, Anne. I am so sorry. I have not been as faithful as I should have been in checking your blog so I didn't know things were at this point. What you are asking is not unreasonable--especially after being burned. I am a hospice chaplain and I can't imagine why they issued a "stop milk" order, that is just dumb. Where I work I would expect her to be offered what she likes, as much and as often. She, not some person at the end of a phone line, should decide for as long as she can about eating. I am just so sorry you are having such difficulty; going to hospice in itself is not a milestone anyone is thrilled to reach to put it mildly. There is a lot you can't control, but you should expect competence. Please don't hesitate to contact me if I can be of any support.
Terri--
Thank you for your concern and your offer of support. I didn't know you are a hospice chaplain. I will email you if I need support and have a few moments to focus on getting it.
Actually, the owner of Roze Room Hospice called me because it is so unusual for anyone to leave and ask for a different hospice. She wanted to hear the details and promised to correct things. That was encouraging, but I still needed to leave this particular hospice service.
--Anne E.
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