Sleeping in shifts: a family night-rotation sheet, and when hired overnight help makes sense

Hospice at home, sleeping in shifts, family exhausted: that is not a search, it is a description of the house. The nurse left at four. Nobody is coming until Thursday. Somebody has to be awake, and lately it has been you. This page is the rotation sheet, the warning signs, and the honest list of who else can take a night.

Why the nights land on the family

Because the benefit is built that way. Medicare's booklet says a hospice nurse and doctor are on call 24 hours a day, 7 days a week, which is a phone line and a car, not a person in the chair. The Hospice Foundation of America says in most cases, hospice does not provide around-the-clock bedside care and that hospice at home generally requires one or more caregivers, family, friends or paid. The exceptions are medical: continuous home care during periods of crisis, predominantly nursing, and inpatient respite of not more than five consecutive days at a time. Neither is a standing night sitter. The nights are yours to organize, and organizing them is a skill, not a character test.

Can I leave a hospice patient alone at night?

This site will not answer that for your mother, because it depends on her, and the people who can weigh it are the hospice nurse and you. What the sources say: hospice at home generally requires a caregiver, and the National Institute on Aging notes that some people are afraid of being alone at the very end, while also telling the caregiver to ask for help and accept it. Put the question to the nurse in these words: given where she is tonight, does someone need to be awake, or nearby and asleep, or is she safe alone for two hours? You will get a straighter answer than any forum can give.

Is it okay to sleep if she is on hospice?

Yes. The NIA is blunt about what sleepless caregiving does to the person doing it. Caregivers have a higher risk of physical and mental health issues, sleep problems, chronic conditions and even premature death. Family Caregiver Alliance, compiling those published estimates, puts clinically significant depression symptoms among caregivers in a range from 40 to 70 percent. Sleeping in a rotation, with someone else awake, is how families keep the promise past the first month.

The rotation sheet

Print it, fill in names, tape it to the fridge. The rule is that the person off shift is off: door closed, phone on, no listening through the wall. The person on shift sits, turns her when it is time, keeps her lips moist, notices, and calls the hospice line if anything changes. Nobody on shift makes a medical decision.

Two people cannot run this for more than a few weeks. That is not a judgment; it is arithmetic. Three can hold for a while. Four is a household. If your count is two, read the rest of this page as a plan, not a defeat.

The signs the rotation is failing

• The off-shift person is not sleeping. They lie there listening. The sheet is a fiction.
• Someone has fallen asleep on shift and woken to find her needing to be turned or changed.
• One person's name is on every night line. That is the unequal division of caregiving duties the Family Caregiver Alliance says starts most family discord.
• You have stopped calling the hospice line at night because you are too tired to describe what you are seeing.
• Somebody has snapped at her. Then wept. Then not slept.

Any one of these means the sheet needs another name on it. Where the name comes from is the next section.

Who sits with a hospice patient at night?

In rough order of what families try:

1. Relatives and friends, asked specifically. The NIA says to suggest a specific task to someone who offers to help. "Tuesday, one to five, the chair" is a specific task. "Let me know if you need anything" never fills a block.
2. Hospice volunteers. On the team list in the booklet; availability varies. Ask what yours can do and whether nights are possible.
3. Inpatient respite. Up to 5 days each time, arranged by the hospice, in a facility. She leaves the house; you sleep in yours. Details in the respite article.
4. Hired overnight non-medical care. A person in the chair from, say, ten to seven, so your whole household sleeps. Missouri calls it private duty or private pay care: personal care, respite or companion care, paid privately, no physician order, no state license for that type of company. Medicare does not pay for 24-hour-a-day care at your home, so this is your money or a long-term care policy. Tell the hospice who is coming and ask the nurse to brief them: turning, mouth care, what to call about.

The hired night is the one most families reach for last and wish they had reached for first, because it is the only option that gives every family member the same night off at once. If the reason for the nights is a parent who keeps falling on the way to the bathroom rather than a parent who is dying, Mom Keeps Falling is written for that house.