Between the visits: the jobs that land on the family, and who can share them
The hospice aide only comes twice a week. Who does the rest? You do, at the moment, which is why you are reading this with one ear on the bedroom. This page is the task list, in three columns: the hospice, the family, and a hired non-medical caregiver. Print it. Argue with it. Hand it round.
Why two visits is the design, not the shortfall
Medicare's hospice booklet lists hospice aide and homemaker services among the things a plan of care can include, and lists aides, homemakers and volunteers on the team. It does not promise a number of visits, because the plan of care sets that, and Medicare says you and your family will work with your hospice care team to set it up. CaringInfo says the rest without softening it: the day-to-day care of a person receiving hospice care is provided by family, friends, the inner circle, or paid home health aides. The aide's two visits sit on top of that. They do not replace it.
You can ask for more, and hospices adjust. But the honest starting point is the table below.
The jobs, in three columns
Everything in the family column can move to the hired column. Nothing in the hospice column can move anywhere. The hands-on rows come from the National Institute on Aging's page on care and comfort at the end of life, which tells families to check with the person's health care team to make sure these suggestions are appropriate for the situation. That instruction applies to every row here.
| The job | Hospice | Family | Hired non-medical caregiver |
|---|---|---|---|
| Medicines, doses, what a symptom means | Yes. The nurse. | Give what is prescribed, as instructed. Write down the time. | No. May remind, may fetch the box, may write the time down. Never decides. |
| Turning and repositioning | Shows you how; checks the skin. | Every few hours, per the NIA, with the nurse's instruction. | Yes, once shown. This is the row that saves your back at 3am. |
| Changing her, briefs, the bed | Aide, on aide days. | All the other days. | Yes. |
| Bath or bed bath, hair | Aide, on aide days. | In between, if she wants it. | Yes. |
| Mouth and lips | Supplies, instruction. | Lip balm, a soft damp cloth, ice chips if she is conscious, per the NIA. | Yes. |
| Skin watch | Nurse assesses and treats. | Look at the heels, hips, lower back, and back of the head for dark or discolored spots and tell the nurse. | Looks, tells you, tells the nurse. Does not treat. |
| Food and drink | Nurse advises; dietary counseling is on the benefit. | Offer small amounts of favorites; do not force a dying person to eat. Report changes. | Offers, helps with feeding if she wants to eat, never forces, reports. |
| Meals for the living | No. | Someone has to. | Yes. Cooking for the household is ordinary non-medical help. |
| Laundry, the mail, the pharmacy run, the dog | Ask about homemaker services at yours. | The NIA's list of things a friend can take off you. | Yes. |
| The door, the phone, the visitors | No. | Yes, or a designated relative. | Can answer and take messages if you ask. |
| Being awake at night | The on-call line; a nurse comes when needed. | Yes, in shifts. | Yes. Presence in the chair while you sleep. |
| Calling the hospice when something changes | Answers 24 hours a day, 7 days a week. | Yes. You are the one who calls. | Calls you, then the line, by the plan you agreed. |
What does the hospice aide do, and what does she not do?
The aide is the hands of the hospice: personal care, comfort, the bath you cannot manage alone, the bed changed with her in it. She is not the nurse and does not carry the nurse's decisions. She is also not yours for the other five days, and that is the whole point of the family column.
Can a hired caregiver do the turning and changing?
Yes. Those are personal care tasks, and they are the reason families add a hired caregiver alongside hospice rather than instead of it. Missouri's health department describes this category as private duty or private pay care: aide personal care, respite or companion care, paid privately, no physician order required, and no state license issued for that type of company. Medicare does not pay for it; its home health page says it does not pay for 24-hour-a-day care at your home or for personal care with daily living when that is the only care needed.
The line to hold: a hired caregiver is presence and hands. The hospice nurse owns the medical plan, and the booklet says the hospice must give or arrange all care you get for your terminal illness. So you tell the hospice you are bringing someone in, you ask the nurse to show that person the turning and the mouth care the same way she showed you, and you write on the fridge what goes to the nurse. Which is everything that is not on the list above.
If the idea of a stranger in her house makes you hesitate, the Family Caregiver Alliance's advice for hiring in-home help is to tell the person that you need help and that accepting hired care is something they can do to help you, not a sign you are going to abandon them. That is the Alliance's wording, not a promise of how anyone in this house will feel.
What to do tonight
- Put the table on the fridge. Write a name in every family-column row for tomorrow.
- Empty rows are your ask list: for the social worker, for a sibling, for a hired caregiver.
- Ask the nurse on her next visit to show one more person the turning and the mouth care.
- Decide who is awake tonight.
When to ask the care team or the doctor
- Any change in her: breathing, pain, restlessness, skin, swallowing, sleep. That is the nurse's row, always.
- Whether the aide can add a day, and what homemaker services mean at your hospice.
- Whether the hospice has volunteers who can sit.
- Before a hired caregiver starts: what the nurse wants them to do, and never do.