Can You Hire a Home Caregiver Alongside Hospice?

When a parent or spouse starts hospice at home, many families are surprised by how much of the day still falls to them. The hospice team visits, answers the phone at night and manages comfort and symptoms. But someone still has to help with the shower, make lunch, sit with your loved one through a restless evening and be there while you sleep or go to work.

Yes, you can hire a home caregiver alongside hospice. Many families do. This guide explains how the two roles differ, the questions to ask about visits and gaps in support, what a non-medical caregiver can help with, who to call when something changes, and what to ask about payment before you add help.

What the Hospice Team Does

Hospice is medical and supportive care for someone with a terminal illness who has chosen comfort care over treatment intended to cure. Under Medicare, the hospice team sets up a plan of care with you. That plan can include doctor services, nursing care, medical equipment, drugs for pain and symptom control, hospice aide and homemaker services, social work, and counseling and grief support for the family. A hospice nurse and doctor are on call 24 hours a day, 7 days a week. You can read the full list in Medicare’s Medicare Hospice Benefits booklet and on its hospice care coverage page.

Medicare hospice has four levels of care, defined in 42 CFR 418.302:

• Routine home care. Your loved one is at home and receives visits from the hospice team on a schedule set by the plan of care.
• Continuous home care. During a short period of crisis, when symptoms need close management, hospice can provide care at home for up to 24 hours a day. This care must be predominantly nursing care, and it lasts only as long as the crisis does.
• Inpatient respite care. Short-term care in an approved facility to give family caregivers a rest, for up to 5 days at a time.
• General inpatient care. Care in an inpatient setting when pain or other symptoms cannot be managed at home.

On most days, then, hospice at home means visits on a schedule set by the plan of care, with phone support in between. How often each team member visits, and for how long, varies by hospice and by your loved one’s needs.

What a Non-Medical Caregiver Does

A home caregiver from a licensed home care agency provides hands-on daily support. Caregivers do not diagnose, change medications or make clinical decisions. Their work is the routine of the day:

• Personal care: bathing, toileting, changing, dressing, oral care and gentle repositioning, following the care plan.
• Meals and drinks: preparing food and offering drinks according to the person’s wishes and the hospice team’s instructions, including any swallowing precautions. Do not pressure someone to eat or drink.
• Light housekeeping: laundry, changing bed linens and keeping the room comfortable and tidy.
• Medication reminders: reminding your loved one when it is time for medications the hospice team has prescribed. Questions about doses always go to the hospice nurse. Our guide on whether a home caregiver can help with medications explains where the line sits.
• Companionship: sitting with your loved one, reading aloud, playing favorite music or simply being present.
• Watching and reporting: noticing changes in breathing, comfort, eating or alertness and telling the family and the hospice team, as the care plan directs.

The two roles fit together. The hospice team manages comfort and symptoms. The caregiver covers the hours of ordinary help between visits.

Questions to Ask About Visits, Overnights and Gaps

Before you decide how much extra help you need, map the week. Ask the hospice team:

• How often will the nurse, aide, social worker and chaplain visit, and roughly how long does each visit last?
• How many hospice aide visits are planned each week, and what will the aide do during them?
• What number do we call after hours, and how quickly does someone usually call back or come out?
• If symptoms get worse, how do you decide whether continuous home care or inpatient care is needed?
• Is inpatient respite care an option for us, and how is it arranged?

Then look honestly at the gaps:

• Who is in the home during the day while family members work?
• Who gets up at night when your loved one needs to be changed or repositioned, or is restless?
• Can the main family caregiver lift or turn your loved one safely, alone?
• When did the main family caregiver last sleep through the night or leave the house for a few hours?

If the answers show long stretches with one tired person in charge, that is usually where a home caregiver helps most.

Where Extra Help Makes the Biggest Difference

Families tend to add help in one of four ways:

• Daytime personal care. A few hours each morning for bathing, dressing, breakfast and setting up the day. See our personal care services.
• Companionship and meals. Visits that keep your loved one company and offer food and drinks according to their wishes and the hospice team’s instructions, including any swallowing precautions. See companion care.
• Overnight help. A caregiver through the night so the family can rest. See overnight home care, or 24-hour home care with awake caregivers working in shifts when someone needs to be up around the clock.
• Family respite. Regular breaks so the main family caregiver can sleep, run errands or simply step away. See respite care.

Many families start with the hardest part of the day, often nights or the morning routine, and add hours if needs change.

Who to Call About Symptoms, Medications or Emergencies

Agree on this before the first shift, and write it down where everyone can see it.

• Symptoms or changes such as pain, breathing changes, agitation, a fall or a sudden decline: call the hospice’s 24-hour number. The caregiver should also tell the family, following the care plan.
• Medication questions about doses, missed doses or “as needed” medications: call the hospice nurse. A non-medical caregiver does not decide whether a dose should be given or changed.
• Emergencies: work out a written emergency plan with the hospice team before care starts. It should say when to contact the hospice and when to call 911. Give a copy to the home care agency. The caregiver follows that documented plan.
• Schedule or caregiver concerns: call the home care agency’s office.

Keep the hospice number, the agency number, the family contact and any advance directive or do-not-resuscitate order in one visible place.

Payment Questions to Ask Before Arranging Extra Help

Hospice coverage and home care coverage are separate questions. Under Medicare, the hospice benefit covers the care in the hospice plan of care, and Medicare does not cover room and board when hospice care is given at home. Medicare’s home health coverage also does not pay for 24-hour-a-day care at home or for personal care when that is the only care someone needs. Medicare also advises contacting your hospice team before getting other services, or you might have to pay the full cost. Its hospice page notes that emergency room care, hospital care and ambulance transport may not be covered unless the hospice team arranges them or they are unrelated to the terminal illness. Go over these coverage rules with the hospice team ahead of time, as part of planning. They are not a reason to delay urgent help.

Before you add a caregiver, ask:

• The hospice team: How many aide and homemaker visits are in our plan of care? Is there anything else your services can cover before we arrange outside help?
• The long-term care insurance company, if your loved one has a policy: Does the policy pay for home care while hospice is in place? Is there an elimination period, a daily limit or paperwork the agency must complete?
• Medicaid or a Medicaid managed care plan, if your loved one is enrolled: Do any waiver services, such as personal care or respite, continue while hospice is elected, and how many hours are authorized?
• The Department of Veterans Affairs, for veterans: Are there home care or caregiver support benefits your loved one may qualify for?
• The home care agency: Which payment sources do you accept? Is there a minimum number of hours per visit? How are schedule changes and cancellations handled?

Our guides to home care payment options and long-term care insurance cover these sources in more detail.

Checklist: Talking Through the Schedule

Use this list when you speak with the hospice provider and the home care agency.

• Write down the hospice visit schedule for each team member, plus the 24-hour hospice number.
• Mark the hours when no hospice team member or family member is available.
• Decide which of those hours need a caregiver: mornings, evenings, overnight or around the clock.
• List the personal care tasks the caregiver will help with, and anything the hospice team has asked you to avoid.
• Agree who the caregiver calls about symptoms, and who calls the family.
• Confirm your emergency plan with the hospice team and share it with the agency.
• Ask how payment works for each service before the first visit.
• Set a date to review the schedule, since needs can change quickly in hospice.

Meeting the Caregiver First

At the end of life, who comes into the home matters even more than usual. A calm, familiar caregiver can make the hardest days easier for everyone. Our guide to choosing a caregiver covers what to tell the agency about preferences, how to meet a caregiver before care begins and what to watch in the first weeks.

How CareLiving Can Help

CareLiving provides home care in Northern Virginia and Greater Pittsburgh. We do not provide hospice services. Families who are receiving hospice can add our caregivers for personal care, companionship, meals, respite, overnight help and 24-hour care with awake caregivers. Our caregivers are screened before they are matched with families. They give medication reminders and follow the care plan, and questions about medications go to the hospice nurse.

We start with a free in-home consultation and write a care plan that sets out the tasks, schedule and routines agreed with your family, including when the hospice team visits and who to call about symptoms. Learn more about our end of life care at home.

Call (571) 599-7467 in Northern Virginia or (412) 900-8761 in Greater Pittsburgh, or choose your caregiver online. Start dates depend on the care assessment, caregiver availability and any required service authorization.