Routine hospice comes with a visit schedule. A nurse comes on her days, an aide comes for bathing on his, and a social worker or chaplain comes when the plan calls for one. A volunteer may come for a few hours if the program has one available. The schedule is real, and the team will tell you what it is. What the schedule does not tell you is who is in the house at three in the morning, who restocks the gloves, or who notices that the bed linens need changing before the next visit. In most homes that work has no name on it. Work without a name belongs to whoever is closest, and in a family that is almost always one daughter or one spouse.
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 default looks like
The problem seldom arrives as a single event. It shows up as a set of small habits that have settled in without anyone deciding them. Check whether these are true in your house.
You are the one who knows where the spare supplies are kept, and you are the one who restocks them.
When the phone rings after the visit has ended, the call comes to you, and you decide whether it can wait until morning.
You have stopped making plans beyond a day or two, not because anything was decided, but because nothing has been handed to anyone else.
If the hospice nurse asked who is awake with the patient tonight, you would give your own name without thinking about it.
When someone offers to help, you have to explain the task before you can hand it over, so you do the task yourself instead.
Make the list before you need it
Take a sheet of paper and write down every task from the past week that was not a visit. Include the meals, the laundry, the trash, the linens, the prescription pickups, the calls to the pharmacy, the errands, and the times you got up in the night to adjust someone without thinking of it as a task. Give each one its own line. Beside each line, write who did it. If you cannot write a name, put a question mark. Those question marks are the work that has no owner yet.
Sort the list into three piles
Some items belong to the hospice team, such as the visits it schedules and the equipment and supplies it arranges for the illness. Some may belong to a person you hire for non-medical help. That person may give medication reminders and pick up a prescription as an errand, but may not hand out, sort or manage medicine. Medicine stays with the family, the doctor and the pharmacist. Everything else belongs to the household, and that is the pile where a name has to be written.
Ask the team to put the gap in writing
At the next care plan conversation, ask the nurse or social worker which items on your list the hospice plan covers and which it does not. Ask what the plan is for the hours between visits, and who on the team you call when one of those hours falls apart. Ask the social worker to help you find out what is available near you. Write the answers down. If the answer is that nothing is covered, that is still an answer, and it tells you where your own names will need to go. The rules behind the benefit are listed on the Sources page, and the local options are on Local Help for Hospice Families.
When the default has to change
If most of the question marks have your name beside them, change that before the night you cannot cover it. Pick two items from the list and assign each to a named person. That person may be a sibling, a neighbor, or a paid helper for a few hours a week. Keep the list where everyone who helps can see it, and read it through once a week, asking which items are still unclaimed. The hours between visits are covered in more detail on The Hours Between Hospice Visits, if you want to see how other households have set them up.
Written names do not make the work smaller. They make it visible, and that is what lets you decline the task that should not be yours and keep the ones that truly are.