A hospice volunteer is a trained person the hospice sends to sit with your parent for a set visit, usually at no charge to your family. That is a real help. It is also a smaller thing than most families first hear, and the gap between what you hoped for and what the visit actually is causes most of the trouble.

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 visit is for

Hospice volunteers keep someone company. They sit with the person, read aloud, let the family leave the room for an errand or a nap, and give the caregiver a short stretch of quiet. The federal hospice rule requires the agency to run a volunteer program, and the volunteer works under the agency's direction, not as a private hire of yours.

Ask what the visit covers

Before you plan around a volunteer, ask the hospice social worker or intake nurse these questions, and write the answers down:

  • How long is one visit, and how many can be scheduled in a week? Ask whether that number is fixed or whether it can change when the week gets harder.
  • Can the visit fall at the hours you actually need, such as the early afternoon when you have an appointment, or is the time set by whoever has an opening?
  • Will the volunteer stay for the whole visit, and can you leave the house while they are there?
  • What exactly do they do? Ask for specifics: sitting, reading, a short walk, keeping a drink within reach, calling you if something changes. Ask them to name what they will not do.
  • If the volunteer cannot come, who calls you, how much notice do you get, and what is the backup?
  • Is it the same person each time, or does the schedule rotate? For many families the same face matters to the person in the bed.

What the volunteer does not do

A hospice volunteer is not an overnight caregiver and is not a personal care aide. They do not stay the night, do not lift or turn, and do not handle the medicine. Medicine stays with the family, the hospice nurse and the pharmacist. If you need hands-on help with bathing, dressing or moving in bed, that is a separate question. Ask the hospice which of those tasks, if any, the benefit includes, and which ones you will pay for or arrange yourself.

Set the volunteer hour beside a paid companion

Put the two options on one sheet. For each, write the hours offered, the cost to your family, who chooses the person, whether the same person comes back, what they are able to do in the room, and who you call when they do not show. The volunteer visit is usually the lowest-cost hour in the week, but it is often the least flexible. A paid companion can be booked for the hour you need, but you still have to check the person's training, references and background, and you still carry the scheduling. Many families end up using both. The volunteer covers the steady, predictable hours, and the paid hour covers the appointment you cannot move.

Write the plan down and keep watching it

Once you have the answers, put one line for each visit on the calendar: the day, the hour, the name if there is one, and who calls if it falls through. Keep the sheet where everyone in the house can see it. A volunteer hour is only useful when someone has booked it and someone is checking that it arrives. If a visit is missed twice in a row, call the hospice and say so. That call is part of the job, and it is one the hospice expects you to make.

The wording of the federal rule and the agency's duties is collected on the Sources page. For who to call in your part of the county, see Local Help for Hospice Families.