for the family between the visits
Mom is on hospice at home. The aide comes twice a week. The rest of the hours are ours.
You have not slept a full night since the hospital bed arrived, and the hours between the visits are yours. This desk was written for that kitchen table: not a hospice, not a clinic, a plain account of what hospice at home does and does not do, with every fact linked to a public source and every clinical question sent back to the nurse.
Three weeks ago the hospital bed arrived, or three months ago, and the promise you made got a shape. Hospice came the same week: a nurse with a bag, an aide who is kind to her hair, a social worker with a folder, a number for the night. Then the car pulled away and it was you, and the house, and the hours. Nobody told you the hours would be the hard part. They are.
the week, shaded
Where the hospice is, and where you are
This is one routine-care week. Sage is hospice in the house. Blush is the family, and anyone the family brings in. Your pattern will differ; the hospice writes yours into the plan of care. Nearly every family's grid looks something like this one.
hospice in the house the family, and anyone the family brings in
The visits are real and they help. The on-call line is real, and a nurse will come at three in the morning when it is needed; Medicare's own hospice booklet says a hospice nurse and doctor are on call 24 hours a day, 7 days a week. But the Hospice Foundation of America says the other true thing just as plainly: in most cases, hospice does not provide around-the-clock bedside care. The day-to-day care, as CaringInfo puts it, is provided by family, friends, the inner circle, or paid home health aides. That is the design. It works when the family knows it going in.
the articles
What the family covering the gap needs to know
Eight pieces, each written to one question that gets typed at two in the morning. Read the one you need. None will tell you what a symptom means; all will tell you who to ask.
- Hospice at home is a visit schedule, not a staff. Here is the week, hour by hour.
Does hospice provide 24 hour care at home? Not in the ordinary case, and here is the federal wording that says so.
- The four levels of hospice care in plain words, and which one you are actually getting
Routine, continuous, respite, inpatient: what each is for, who decides, and why continuous is a crisis window rather than a night shift.
- Respite in hospice: how the inpatient respite benefit works and how families use it
Five days at a time, arranged by the hospice, paid mostly by Medicare. How to ask, and what to do with the days.
- "I promised her." Keeping the promise without breaking the family
What dying at home asks of everyone, the jobs that can be shared or hired, and what the promise did and did not include.
- Between the visits: the jobs that land on the family, and who can share them
The hospice aide comes twice a week. A three-column task list for the rest: hospice, family, hired non-medical help.
- Sleeping in shifts: a family night-rotation sheet, and when hired overnight help makes sense
A printable rotation for two to four people, the signs it is failing, and the honest list of who else can take a night.
- What to ask the hospice nurse tonight: the changes families notice
Appetite, sleep, breathing, restlessness, skin. Notice, write it down, call the line. No interpretation offered here.
- Hospice at home in west county: choosing a hospice, the VA, and who pays for the extra hours
Care compare, VA hospice for a veteran, Aging Ahead and the city's agency on aging, and who pays for what.
tonight
Four things before you try to sleep
- Tape the hospice's on-call number by the bed and by the chair. Call it for questions, not only crises; CaringInfo says Medicare certified hospices must have a 24/7 telephone line for exactly that.
- Decide who is awake tonight and who is asleep. One name each. The sleeper shuts the door.
- Write tomorrow's one question for the nurse on the back of your hand if you have to.
- Say the word respite to whoever is in the house with you. It is in the benefit for you, up to five consecutive days at a time, and asking for it is not quitting.
ask for a person in the house
Hours beside hospice, not instead of it
This site does not sell care and takes no fee for sending you anywhere. If you want a non-medical caregiver in the chair overnight, or hands for the days the aide does not come, the form below goes to New Plan Care, the company featured above. Give a name, a number and a town, and somebody will call you back to talk about hours. Do not type anything about her health here; that belongs on the phone with the hospice.
We ask nothing about anyone's health, and you should not type any into this form. Nothing on this page is medical advice.
elsewhere
Two neighbors on the same street
If hospice is not yet in the house and the question is still whether she can stay at home at all, Keep Her Home was written for that earlier stretch. If the nights are about a parent who keeps falling on the way to the bathroom rather than a parent who is dying, Mom Keeps Falling covers that house.