Updated September 2026. Written and reviewed by the Lily Hospice clinical team.
On hospice at home, the family does the ordinary things: gives scheduled medicines, helps with meals and turning, keeps a simple notebook, and calls the nurse when something changes. The hospice team does the medical work, teaches every task before asking for it, and answers the phone at any hour.
The question underneath almost every first call is not “what does hospice do?” It is “what will I have to do?” Families picture themselves alone with a sick parent at 3 a.m., holding a syringe, guessing. That picture is wrong, and it keeps people from calling for weeks they later wish they had back. This is an honest account of what a family actually does day to day when someone is on hospice at home in metro Detroit, what the team does, and what nobody will ever ask you to do alone.
What the hospice team does, and what the family does
Hospice is a team that comes to the house on a schedule set by the plan of care, plus a phone line that reaches a nurse at any hour between visits. The nurse manages symptoms, adjusts medications with the doctor, checks skin, breathing and comfort, and teaches. The aide comes for bathing, hair, skin and linens. The social worker handles paperwork, benefits, respite, family meetings and the harder conversations. The chaplain comes if wanted, for families of any faith or none. Volunteers can sit with the patient so a caregiver can leave the house. Equipment, supplies and medications are delivered. All of it is covered by Medicare for most families; the full list is on our hospice services page.
The family does the in-between: the hours when no one from the team is in the house. That is most of the hours in a day, which is why it feels like a lot. But what fills those hours is, almost entirely, ordinary caregiving that the team has shown you how to do: giving medicines at the times written on the sheet, offering food and drink, helping to the bathroom or the commode, turning and propping with pillows, keeping company, and noticing. Noticing is the most important job the family has, and it is one nobody else can do as well.
A typical day at home on hospice
Every household is different, and the plan of care sets the specifics. But a day for a family caring for, say, a mother with advanced heart failure in a ranch house in Warren tends to look something like this.
Morning. Someone checks in: is she awake, comfortable, breathing easily? Morning medications come from the pre-filled organizer or the sheet the nurse wrote out. Breakfast is whatever she wants and however much she wants, which may be three bites. A daughter helps her wash up, or waits for the aide’s visit to do the bigger bath. If today is a nurse day, the visit usually lands in the morning or early afternoon; the nurse examines her, asks the family what they have seen since the last visit, and adjusts the plan.
Midday. The aide may visit two or three times a week, typically for bathing, skin care and fresh linens; the schedule is set in the plan of care, not by the family’s persistence. Lunch, again, on her terms. If she wants to sit in the recliner, someone helps her there. A phone call to a sibling in another state with the day’s report.
Afternoon. Often the quietest part of the day. She sleeps; the caregiver sits nearby, folds laundry, returns calls, or, if a volunteer or neighbor is there, leaves for an hour. Repositioning every couple of hours if she is in bed, the way the nurse demonstrated, to protect her skin.
Evening. Evening medications. A small supper. Family arrives after work; the grandchildren visit. If something has changed during the day, such as new restlessness, more shortness of breath or pain that the scheduled medicine is not holding, this is the moment to call the nurse rather than waiting for morning. Then, quiet.
Night. Most nights are uneventful. On the ones that are not, the family calls the number and a real person answers, a nurse calls back, and a nurse comes to the house if needed. What happens when you call hospice at night.
What the family is never expected to do
This is the part families most need to hear. You will not be asked to do wound care beyond what the nurse has taught and watched you do. You will not manage IV lines. You will not decide medication doses on your own; every “as needed” medicine comes with written instructions for when to give it, how much, and when to call first. You will not be left to interpret symptoms alone; that is what the phone is for, at any hour, and you are meant to use it. You will not lift or move someone unsafely; the nurse and aide teach the techniques, and a hospital bed, lift or transfer board arrives when it is needed. You will not handle the practical steps at the time of death by yourself; the nurse comes, and the team makes the calls.
Families sometimes hesitate to use the comfort kit, the small sealed set of medications the nurse places in the home during the first days for pain, shortness of breath, anxiety, nausea and restlessness. Ask the admitting nurse to write down, in plain words, when each one is for. Then, when the moment comes, call. Nobody is ever scolded for calling. What happens on the first hospice visit explains how the kit and the medication review work.
The notebook
The single most useful thing a family can do is keep a plain notebook by the bed. One page a day: medicines given and when, roughly what was eaten and drunk, how much sleep, any pain or breathing changes, bowel movements, and a running list of questions for the next visit. It takes two minutes. It turns “I think she seemed worse yesterday” into something the nurse can act on, it lets three siblings share the caregiving without three versions of the story, and it stops the 2 a.m. worry about whether the evening dose was given. Many families keep it long afterward.
When to call the nurse
Call when pain or breathing is not controlled by the scheduled medicine within the time the nurse told you to expect. Call for new confusion or agitation, a fall, a fever, no urine for many hours, vomiting that will not settle, a skin area that is red and not fading, or any change that frightens you. Call if you are not sure. The team would far rather hear from you at 9 p.m. than find out at the next visit. And call 911 only for what the nurse has told you needs 911; for most things on hospice, the hospice line is the right call, and it reaches someone faster.
Rest for the caregiver
A family caregiver who never rests becomes a second patient, and the team watches for it. Several things are built into the benefit. Respite care is up to five consecutive days in a contracted facility so the caregiver can sleep, recover from their own illness, or attend a wedding, with the patient coming home afterward; it can be used more than once. Volunteers can sit for an hour or an afternoon. The social worker helps set up a family rotation so the same person is not on every night, and when more hours of help are needed than visits can cover, helps arrange them. Respite care, explained. If the person on hospice lives alone, the plan is built differently, around staggered visits, medication systems and one phone number that works from any time zone: hospice when your parent lives alone.
How long this goes on
Some families do this for a few days, some for many months. Medicare covers hospice in renewable benefit periods for as long as a doctor confirms it still fits; there is no six-month cutoff. What changes over time is the rhythm: more sleep, less food, more of the team’s presence toward the end. The nurse tells the family honestly what she sees at every visit so that nobody is surprised and family can gather in time. How long hospice lasts. If you are still deciding whether it is time to ask, start with Is It Time? A family’s gentle guide.
Lily serves families at home, in senior apartments, assisted living and nursing facilities throughout Oakland, Macomb and Wayne counties.
Guides for the last weeks and days: signs death is near · breathing changes, including the “death rattle” · terminal restlessness · when a dying person stops eating and drinking · morphine myths and facts · what to say to a dying parent · what to do when someone dies at home in Michigan · anticipatory grief · the holidays when someone is dying
Common questions
Do I have to be there 24 hours a day?
No. Hospice does not require a caregiver in the home. Where one is present, the plan is built around their work and sleep; where one is not, it is built around visits, family rotation and extra help.
Will I have to give injections?
Almost never. Hospice comfort medications are chosen so that families can give them by mouth or under the tongue. Anything else is done by the nurse.
How often does the nurse come?
It depends on the plan of care and changes as needs change; typically at least weekly, more often when symptoms are active, and daily or more near the end. The phone reaches a nurse at any hour between visits.
What if I make a mistake with a medication?
Call the nurse and say exactly what happened. Doses are written out to make errors unlikely, and the nurse will tell you what, if anything, to do next. Nobody is scolded.
Can I still go to work?
Many caregivers do. The team helps arrange visits, volunteers, family rotation and, when needed, additional in-home help around your hours. Respite days are there for when it is too much.
Who do I call at the time of death?
The hospice line, not 911. A nurse comes to the house, confirms the death, and handles the calls to the doctor and the funeral home, and the team stays with the family for bereavement support afterward.
Is any of this expensive?
For Medicare, Medicaid and most insured families, hospice services, equipment and comfort medications cost nothing out of pocket. Any exception is explained before care starts.
Hospice isn’t giving up. It’s showing up. Call (248) 955-5100. A real person answers, 24 hours a day.
