Hospice sends you a visit schedule. It does not send you a week. Those are different documents, and the gap between them is where most of the nights get covered by the family. Before you agree to a plan, ask for the schedule in writing and read it against the hours you actually have.
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.
What the schedule should list
Ask the agency for the planned visits for the next seven days, listed by discipline. Under the federal hospice rule, the team is built around a registered nurse, a hospice aide, a social worker, a chaplain or spiritual counselor if you want one, and trained volunteers, with physician oversight. The visits are set in the plan of care, and the team is supposed to review that plan with you. For each person on the list, you should be able to see the day, the rough time window, and how long the visit lasts. If a discipline is not on the list, ask whether it is available and under what conditions, and write the answer down.
Ask whether each visit is scheduled or on call. A nurse planned for Tuesday morning is a different promise from a nurse who will come if someone calls. Both can be legitimate arrangements, but you need to know which one you are relying on.
What the visits do not cover
Most of the hours fall between visits, and the schedule will not say so unless you ask. Put these questions to the intake nurse or the social worker directly:
Who sits with your parent between visits, and does the hospice provide that person? In most cases it does not, and the answer is the family or a privately hired helper.
Does the aide visit include bathing, turning, and toileting help, and how many minutes does it run? Ask for the minutes, not the description.
What happens when the aide does not arrive? Ask who calls whom, and whether the agency sends a replacement the same day.
Which tasks belong to the family, and which ones will the nurse teach you? Ask for the teaching to be recorded in the chart, with the name of the person who taught it, so the next person on the team starts from the same place you did.
The after-hours line
Ask who answers the phone at two in the morning, and whether that person is a nurse. Ask whether a nurse comes to the house after hours or whether most calls are handled by phone. Ask what the agency considers a normal response time, and whether they will tell you when it is running longer. Write the after-hours number on the paper you keep by the phone, and write the agency's name next to it so a stranger at the door can read both.
Ask what the hospice calls a crisis. Medicare's hospice benefit includes a level of care called continuous home care, meant for short periods when the needs go beyond a routine visit. Ask whether this agency offers it, how it is arranged, and how quickly it can start in your area. Ask also whether respite care is available if the family needs a short break, and how that works for a patient who lives in west St. Louis County. The federal rule and the Medicare hospice pages are listed on the Sources page, and the local contacts are on Local Help for Hospice Families.
Changing the schedule
Schedules change as the illness changes. Ask how you request a change, who approves it, and how long it takes. Ask how often the plan of care is reviewed, and whether you will be asked to take part. If you come to believe the plan no longer matches what is happening in the house, ask who you call about that, and ask for the answer in writing.
Keep the list. When the schedule shows a gap, you will have the words to name it, and you can bring it to the team as a question with a time attached. The gap belongs at the table with the team, not in the middle of your night.