Caring for someone on hospice at home

What does the family do, and what does hospice do?

Hospice at home is a visiting service. The nurse, the hospice aide, the social worker and the chaplain come on a schedule written into the plan of care, and the schedule grows as needs grow. The hospice brings the medicines, equipment and supplies related to the terminal illness, and a nurse answers the phone 24 hours a day, 7 days a week, and can visit when needed.

Between visits, the people at home do the daily care: help to the bathroom, meals and drinks, turning in bed, giving the scheduled medicines, and keeping watch. Nobody is expected to know how at the start. Teaching the family is part of the hospice's job, and the plan of care has to fit what the patient and family need (42 CFR 418.56). For what hospice provides at each hour, read does hospice provide 24-hour care?.

Who does what at home

Can a hospice patient be left alone?

Sometimes, for a while. It depends on the person, and it changes as the illness changes. Early on, some people can be alone for part of the day if they can get to the bathroom safely, reach a phone, take their own medicines and think clearly. Later, most people need someone close by most or all of the time, and in the last days someone should be there.

The hospice team looks at this at the first visits. The assessment covers how well the person can move, understand and take part in their own care (42 CFR 418.54). Ask the nurse directly: "Is it safe for Mom to be alone, and for how long?" The answer is a judgment about this person in this home, and it is worth asking again whenever things change.

What makes being alone unsafe

If any of these is true, plan for someone to be there, or check with the nurse before leaving the person alone.

• Falls, or getting up without help when they should not
• Confusion, wandering, or not remembering how to call for help
• Medicines that cause drowsiness, or strong pain medicines that need to be given on time
• Oxygen in the home and anyone who smokes, or open flames nearby
• Trouble swallowing, or breathing that gets worse quickly
• Pain, nausea or agitation that comes on fast and needs a medicine from the comfort kit

If the person will be alone for a short time

• Leave a phone within reach, with the hospice number saved and written down: (877) 258-7129.
• Agree on a check-in time by phone, and have a neighbor or relative who can come if there is no answer.
• Put water, glasses, the call bell or a medical alert button, and the urinal or commode within reach.
• Keep the comfort kit and other strong medicines out of reach of anyone who should not take them.
• Tell the nurse about the plan, so the team can say if it is not safe.

What is caregiver burnout?

Burnout is the point where the person giving care is worn down in body and mind, often after weeks of short sleep and no time off. It is common in hospice care at home, and it is not a failure. The National Institute on Aging's advice to caregivers starts with looking after yourself, because a caregiver who is ill or exhausted cannot keep going.

Signs you need more help

• You sleep only in snatches, for weeks at a time.
• You are getting sick, or skipping your own appointments and medicines.
• You snap at the person you are caring for, then feel guilty.
• You feel hopeless, numb or angry most of the day.
• You have had no day off in a month, and no one else knows the routine.
• You dread the night, or you are afraid of what you will do if one more thing goes wrong.

Help that exists

Some of this is part of hospice. Some of it works alongside hospice. The hospice social worker can help you sort out which fits.

Time off work to give care

If you work in California and pay into State Disability Insurance, Paid Family Leave from the Employment Development Department (EDD) can replace part of your wages while you care for a seriously ill family member. Paid Family Leave pays benefits but does not protect your job on its own. Federal and state leave laws may protect it. Ask your employer's human resources office, and see the EDD page in the sources. Read paid family leave in California for what it pays, job protection and how to apply.

When care at home becomes too much

Sometimes home stops being possible, even with help. Hospice can continue wherever the person moves, including an assisted living or board-and-care home or a nursing facility, though Medicare does not pay room and board there. The social worker can talk through the choices. Read dying at home: what it takes and hospice in a nursing home.

Common questions about caring at home

Related guides

Does hospice provide 24-hour care?, what to expect in the first week, the comfort kit and bereavement and caregiver support.