The visit schedule is written for daylight. The hard hour is the one after it closes, when your parent is awake, something has changed, and the only person to call is the one whose number is on the paper taped to the refrigerator. Before that hour comes, find out what that number actually does.
Local option: New Plan Care gives families in the St. Louis area in-home help so a parent can stay home: companionship, help with bathing and dressing, meals, and overnight care. Call (314) 405-0887.
Confirm which number is which
Hospice programs often give a family more than one number: a daytime office line, a nurse line, and an after-hours line that may or may not be the same as either. Ask the agency to name each one in writing and to tell you which to call first in the middle of the night. Write all of them on one sheet, not on the back of the admission packet.
Ask who picks up
Call the after-hours line on a weekday evening, while you are still calm, and listen. Is a person answering, or a recording? If there is a recording, how many options does it offer, and how long does it take to reach someone? Ask whether the person who answers at night is a registered nurse who can see your parent's file, or a call center that takes a message for a nurse to return later. Both can be legitimate, but they mean very different things to a worried person at 2am, so know which one you have.
Ask what they will ask you
The person on the other end will want to know what has changed, when it started, and what your parent is like right now. Ask what details they expect you to have ready, so the call stays short and the answer is useful. Keep a notebook by the bed for this. Write the time, what you noticed, and what you did. You are reporting what you see. The clinical reading belongs to the nurse, and you should not be asked to make it yourself.
Ask whether anyone comes out
This is the question most families never ask. Medicare's hospice rules require the hospice to provide around-the-clock access and a registered nurse for consultation, but the rules do not tell you whether a nurse will drive to your house at night, under what conditions, or how long you should expect to wait. Ask directly. Under what circumstances does the on-call team come to the home? Who decides? What is the usual wait? Ask whether a visit can be added to the schedule when the regular ones are not enough. Get the answers in writing, and keep them with the plan of care.
Ask what the hospice will not do by phone
If the question is about a dose, a missed medicine, or whether to give something extra, the answer comes from the hospice nurse, the prescriber, or the pharmacist. The family keeps the medicine. A hired or in-home caregiver can give reminders and pick up prescriptions as an errand, but does not hand out, sort, or manage the medicine. Make sure whoever answers the after-hours line can tell you who on the team handles medicine questions, and that the answer is the same every time.
Put it on one sheet and name who keeps it current
Write the after-hours number, the order to call numbers in, what to have ready on the call, the answers to the visit questions above, and a line that says what the hospice has said it will not handle by phone. Put a copy where the night caregiver can see it and a copy in the binder. Name the family member who updates it when a number changes or a new nurse is assigned. A sheet that is three weeks out of date is worse than none, because it will be trusted.
When the phone is not the right call
If you believe your parent is in immediate danger, call 911 first. The hospice line is for the questions that come with hospice care, not a substitute for emergency help. Once the immediate need is handled, call the hospice so the team knows what happened.
For the federal rules and the public sources behind this guide, see the Sources page. If you want to check what help exists near you in west St. Louis County, the Local Help for Hospice Families page is the next place to look.