If you are caring for your father at home on hospice, Medicare includes a way for you to rest. Inpatient respite care lets him stay in a Medicare-approved facility, such as a hospice inpatient unit, a hospital or a nursing facility, for up to five consecutive days per occurrence while you sleep, travel, see your own doctor or simply catch your breath. Medicare pays the hospice; you may owe 5% of the Medicare-approved amount for the stay. Respite can be used more than once, though not back to back without a break in between.
That is the headline. Now the details, and the parts of hospice that make daily life lighter even when you never use respite at all.
Why respite exists
Caregiving at home is loving, and it is exhausting. Nights are interrupted. Your own appointments get canceled. Somewhere along the way you may have stopped noticing how tired you are.
Medicare built respite into the hospice benefit for a plain reason: a rested caregiver provides better care and lasts longer. Using respite is not abandoning your father. It is part of the plan for keeping him at home.
What inpatient respite care is
Inpatient respite is one of the four levels of hospice care under Medicare:
- Routine home care – the usual visits at home or in a facility
- Continuous home care – extended nursing in the home during a short crisis
- Inpatient respite care – a short facility stay to give the caregiver a break
- General inpatient care – a facility stay for symptoms that cannot be managed at home
During respite, your father is admitted to a facility that has a contract with the hospice and meets Medicare’s requirements. His plan of care, medications, comfort measures and preferences travel with him, and the hospice team stays involved.
The rules, plainly
- Up to five consecutive days per respite stay. Medicare counts the day of admission as a respite day, and the day of discharge is generally not billed as respite.
- Occasional use. Medicare describes respite as something provided “only on an occasional basis.” There is no fixed annual cap, but it is meant for periodic breaks, not ongoing placement.
- Cost. You may owe 5% of the Medicare-approved amount for the inpatient respite stay. The hospice will tell you the estimated amount before the stay. Many Medicaid plans and private insurers mirror the Medicare benefit; the social worker can confirm your father’s coverage.
- Where. A Medicare-approved facility with which the hospice has an agreement: a hospice inpatient unit, a hospital, or a skilled nursing facility.
Respite is for the caregiver’s benefit. If your father’s symptoms flare and he needs a facility for medical reasons, that is a different level of care (general inpatient), and the hospice team will make that determination.
How to arrange a respite stay
- Tell your hospice nurse or social worker. Say what you need and when. “My daughter’s wedding is the 14th” or “I have not slept in three weeks” are both perfectly good reasons.
- The hospice checks availability at its contracted facilities and confirms the dates. Planned respite, with a week or two of notice, is easiest to arrange. Urgent respite is sometimes possible, so ask.
- The hospice coordinates transport. Depending on your father’s condition, this may be a family car, a wheelchair van or an ambulance. The team will tell you what is appropriate.
- His care plan goes with him. The facility receives his medication list, his routines and his preferences. The hospice nurse remains his nurse.
- He comes home at the end of the stay, and routine home care picks up where it left off.
Bring a few familiar things: his own pillow, photos, a favorite blanket. Facilities welcome it.
What to do with the break
Families often feel guilty about this part, so we will say it plainly: do something that is for you. Sleep. Go to your own doctor. Sit in a quiet house. You do not need to “earn” the time. Coming back rested is the whole point.
Ways hospice lightens the load every week, not just during respite
Respite is the big, formal break. Most of the relief hospice provides happens in ordinary weeks.
Hospice aides
A hospice aide visits on a regular schedule to help with bathing, grooming, skin care, changing linens and repositioning. For many caregivers this is the most valuable visit of the week. The tasks that are physically hardest, and most private, are handled by a trained, gentle professional.
Volunteers
Hospice volunteers are trained and screened. They can sit with your father for a couple of hours so you can run errands, take a walk or nap. They can read, play cards, listen to old stories or just be a calm presence. Medicare requires hospices to use volunteers as part of care, and a regular volunteer visit can change the shape of a week.
The nurse line, 24 hours a day
Much of caregiving stress is the fear of what might happen at 3 a.m. Knowing that a real person will answer, and that a nurse can come if needed, lets many caregivers sleep again.
The social worker
The social worker handles the tangle: forms, advance directives, questions about Medicaid, family disagreements, and finding community resources. That is hours of your life handed back.
Equipment and supplies
A hospital bed with rails, a bedside commode, a shower chair, a lift, incontinence supplies. Hospice provides equipment and supplies related to the terminal illness, delivered to the house. The right equipment makes caregiving safer for your father and easier on your back.
Continuous home care in a crisis
If your father hits a period of severe symptoms that need close nursing attention to stay at home, continuous home care can bring extended nursing hours into the house for a short time. It is not a substitute for respite, but it means a crisis does not automatically become a hospital stay.
Support for you, too
The chaplain and social worker are there for your feelings, not only his. And bereavement support continues for the family for up to a year after a death.
Signs you need a break now
- You are getting sick more often or ignoring your own symptoms
- You feel irritable with your father and then ashamed of it
- You are not sleeping, or you are sleeping in a chair
- You cannot remember the last time you left the house for something that was not an errand
- Friends have said “you look exhausted” and you brushed it off
Any one of these is reason enough to call your hospice team and ask about respite.
How Lily handles this
Respite care is part of Lily Hospice’s services for every family we serve in Oakland, Macomb and Wayne counties. Your nurse or social worker can start the arrangement with a phone call, and our 24/7 line is available if a need comes up suddenly. Between respite stays, our aides, volunteers and social workers are scheduled around your routine, and our Journey Program can bring virtual reality experiences to your father while you take an hour for yourself.
Frequently asked questions
How many days of respite does Medicare cover? Up to five consecutive days per respite stay, in a Medicare-approved facility. It can be used more than once during hospice care, on an occasional basis.
What does respite cost? You may owe 5% of the Medicare-approved amount for the inpatient respite stay. The hospice will estimate the amount before the stay. Routine home hospice visits have no copay.
Can respite happen in our home instead of a facility? Under Medicare, inpatient respite care is provided in an approved facility. At home, the same purpose is served in smaller pieces by aide visits and volunteer time. Some families also arrange private-duty help on their own; the social worker can explain how that fits alongside hospice.
Will my father be upset that I need a break? Some patients worry about being a burden and are relieved to know you are resting. Framing it as part of the plan, and bringing familiar things to the facility, helps. The hospice team can help you have that conversation.
Talk to us
You do not have to be at the end of your rope to ask for help. Call Lily Hospice at (248) 955-5100, any hour, and a real person will answer. We can explain respite, aide visits and volunteer support, and set up whichever ones your family needs.
Written and reviewed by the Lily Hospice clinical team.
Sources
- Medicare.gov, “Hospice care”: https://www.medicare.gov/coverage/hospice-care
- Medicare.gov, “Medicare Hospice Benefits” (official booklet, PDF): https://www.medicare.gov/publications/02154-medicare-hospice-benefits.pdf
- CMS, Medicare Benefit Policy Manual, Chapter 9, “Coverage of Hospice Services”: https://www.cms.gov/regulations-and-guidance/guidance/manuals/downloads/bp102c09.pdf
- National Alliance for Care at Home (formerly NHPCO), Hospice Care Overview: https://www.nhpco.org/hospice-care-overview/
