Caring for Someone in Hospice: Support and Self-Care for Every Family Caregiver

If you are caring for someone in hospice, you are doing one of the most loving and most exhausting things a person can do. This guide is for you, whoever you are: a spouse or partner, a grown son or daughter, an older husband with health problems of his own, a teenage grandchild, a friend or neighbor who stepped in, or chosen family. You matter here too.

You Are Not the Only One

A 2025 national study by AARP and the National Alliance for Caregiving found that about 63 million Americans, nearly one in four adults, are family caregivers. About 4 in 10 feel high emotional stress from caregiving, about 1 in 5 describe their own health as poor, and about half say caregiving has hurt them financially.

Hospice caregivers carry an extra weight, because they are giving hands-on care while also facing the coming loss of someone they love. Researchers describe two kinds of strain: the tasks, which are physical and constant, and the emotions, which include worry, helplessness, and early grief. That is why you can feel bone-tired even on a day when "nothing much happened."

Signs That Strain Is Turning Into Burnout

Almost every hospice caregiver is tired. Burnout goes deeper. Watch for these signs:

• Feeling numb, flat, or empty, even toward the person you love
• Feeling hopeless or trapped
• Snapping at people, then feeling terrible about it
• No longer doing anything at all for yourself
• Sleeping and never feeling rested
• Relying on alcohol, pills, food, or screens to get through the day
• Thinking everyone would be better off without you

If that last sign is true for you, please call or text 988 today. You don't have to be in danger to call. Being overwhelmed is reason enough.

A 2024 study of hospice caregivers found that caregivers who felt the most burdened, and whose quality of life had dropped the most, were also the most likely to have symptoms of depression. Depression and anxiety are common in caregivers, and both can be treated. If low mood, constant worry, or trouble sleeping lasts two weeks or more, tell your doctor or your hospice social worker.

The Feelings No One Talks About

Caregivers often feel things they are ashamed to say out loud: wishing it were over, resentment toward relatives who don't help, anger at the illness, boredom during long waiting days, and guilt about all of it. Hospice workers hear these feelings every day. Feelings are not choices, and having a hard one does not make you a bad caregiver. Wanting suffering to end is not the same as wanting your person gone.

If you are already grieving before the death, you may be feeling anticipatory grief. Our guide Grieving Before Goodbye goes deeper.

Your Hospice Team Is There for You Too

Hospice was designed to support the whole family, and several of its services are for the caregiver. Many families never use half of what is offered.

• Hospice aides help with bathing and personal care, which gives your back and your heart a rest.
• Volunteers can sit with your person so you can nap, shower, or run errands.
• The social worker helps with family conflict, money worries, paperwork, and counseling referrals.
• The chaplain supports people of every faith and of none, including you.
• The 24-hour nurse line is there for questions at any hour. Hospice nurses would much rather hear from you early.

Respite Care: A Benefit Many Families Never Hear About

The Medicare hospice benefit includes inpatient respite care so the family caregiver can rest. Your person can stay for up to five days and nights in a row in a Medicare-approved facility while the hospice team keeps overseeing their care. There may be a small copay. You don't have to be in crisis to ask. Being worn out, sick, or needing to attend an important event are all good reasons. Ask your nurse or social worker how it works with your hospice.

Let Others Help, and Be Specific

Feeling supported by other people is one of the strongest protections caregivers have. When someone says, "Let me know if you need anything," they usually mean it. They just need you to tell them what. Specific requests get more yeses:

• "Could you sit with Dad on Tuesday from 2 to 4 so I can see my own doctor?"
• "Would you pick up groceries this week? I'll text you the list."
• "Could you stay over Saturday night so I can sleep?"

Keep a list of tasks other people can do, such as meals, laundry, pet care, phone calls, and family updates, so you're ready when someone offers. The workbook includes a "Say-Yes List" you can keep by the phone.

A Problem-Solving Method That Helps

One of the best-studied supports for hospice caregivers is a simple problem-solving approach called COPE. In a study of 328 hospice caregivers, those who learned it had a better quality of life and felt less burdened by caregiving tasks and by their person's symptoms than caregivers who received usual hospice care. Caregivers in later problem-solving studies said they gained confidence and a sense of control.

• Creativity: brainstorm every possible solution, even unlikely ones.
• Optimism: stay hopeful but realistic. The goal is "I can make this a little better."
• Planning: choose one idea, and decide what you'll do, when, and who will help.
• Expert information: find out what you need to know, and when to call a professional.

Small, Real Self-Care

Self-care in hospice caregiving is not weekends away. It is sleep, food, water, fresh air, and a kind word to yourself. Research on caregivers has found that even occasional breaks make a real difference. In one study, men who gave personal care every single day were very stressed, while men who had even occasional days off were much less stressed.

• Share the nights so you can sleep, even one or two nights a week.
• Keep easy food and water where you spend the most time.
• Ask the hospice team to show you safe ways to move your person, and ask whether equipment would help. Back injuries are common among caregivers.
• Keep your own doctor visits and medicines. Tell your doctor you are a caregiver.
• Be kind to yourself. A 2021 research review in hospice and palliative care found that self-compassion supports self-care and helps people keep from neglecting their own needs during hard times.

Every Kind of Caregiver

There is no single picture of a hospice caregiver, and each kind of caregiver faces something a little different.

• Spouses and partners are losing their closest companion while giving round-the-clock care, often with no one to hand off to at night.
• Older caregivers: about a third of family caregivers are 65 or older, and many manage their own health conditions. Tell the hospice team your limits so they can plan safer care.
• Men now make up about 4 in 10 family caregivers. Many are doing hands-on care for the first time, and research shows men are less likely to tell others they're caregiving or to ask for help.
• LGBTQ+ caregivers and chosen family may worry about being left out of decisions. A health care power of attorney and a HIPAA release can protect your place at the bedside. SAGE's LGBTQ+ Elder Hotline is 1-877-360-5428.
• Working and sandwich-generation caregivers may qualify for up to 12 weeks of unpaid, job-protected leave under the Family and Medical Leave Act. Some states offer paid family leave. Ask your HR department.
• Long-distance caregivers can take on calls, bills, and coordination, and plan visits that give the local caregiver a real break.
• Friends and neighbors often have no legal standing and little recognition. Ask your person to sign a HIPAA release so the team can talk with you.
• Families of every culture and faith: hospice teams can adapt care to your customs, and you have the right to a professional interpreter at no cost. Children should not have to interpret difficult medical news.
• Children and teens who help with care are often invisible. Researchers estimate there are millions of young caregivers in the U.S., and they tend to have more anxiety and depression than their peers. Tell the hospice team a young person is helping, protect their school and sleep, and remind them they are not responsible for anyone getting better. The American Association of Caregiving Youth (aacy.org) supports young caregivers.

The workbook has a full page for each of these caregivers, and more, including caregivers with a disability, caregiving on a tight budget, caring for someone you had a hard relationship with, dementia, and parents caring for a child.

If You Ever Feel Close to the Edge

Exhausted, frightened caregivers sometimes feel rage rise up, or the urge to shout or grab. This happens to good, loving people. If you feel close to the edge, make sure your person is safe, step out of the room, breathe, and call your hospice's 24-hour line. Tell them how you're feeling. They will not judge you, and they will help. You can also call or text 988 at any time.

Feeling Prepared Helps, During and After

Research consistently finds that caregivers who feel prepared do better. In one study, caregivers who felt more practically prepared had much lower odds of severe anxiety and depression. In another, caregivers who felt prepared for the death had less complicated grief afterward. Ask your hospice team anything. Our guides What to Expect in the Final Days and The First Hours After a Death at Home can help too.

Support doesn't end when caregiving does. Hospices provide grief support to families for at least 13 months after a death. When that time comes, our guide When the Caring Ends is here for you.

Helpful Free Resources

• 988 Suicide & Crisis Lifeline: call or text 988, or chat at 988lifeline.org
• Your hospice social worker: local programs, counseling, respite, and family support
• Family Caregiver Alliance: caregiver.org
• Caregiver Action Network: caregiveraction.org
• Eldercare Locator (your local Area Agency on Aging): 1-800-677-1116 or eldercare.acl.gov
• ARCH National Respite Network: archrespite.org
• 211: call or text 211 for local help with food, bills, and more
• VA Caregiver Support Line: 1-855-260-3274
• Alzheimer's Association 24/7 Helpline: 1-800-272-3900
• SAGE LGBTQ+ Elder Hotline: 1-877-360-5428
• American Association of Caregiving Youth: aacy.org
• Courageous Parents Network (for parents of seriously ill children): courageousparentsnetwork.org

More Gentle Guides

• Grieving Before Goodbye: Anticipatory Grief When Someone You Love Is Dying
• What to Expect in the Final Days
• When the Caring Ends: Grief After Caregiving
• Grieving as an Adult: A Gentle Guide for Every Kind of Loss

You can also download The Caregiver's Rest, the free workbook for hospice caregivers.

Sources

• AARP & National Alliance for Caregiving. Caregiving in the U.S. 2025. July 2025; state-level analysis, October 2025.
• Depressive symptoms in caregivers of hospice cancer patients. American Journal of Hospice and Palliative Medicine, 2024.
• McMillan, S. C., et al. (2006). Impact of coping skills intervention with family caregivers of hospice patients with cancer: a randomized clinical trial. Cancer, 106(1), 214–222.
• Demiris, G., et al. A problem solving intervention for hospice caregivers: a pilot study. Journal of Palliative Medicine.
• Self-compassion in hospice and palliative care: a systematic integrative review. Journal of Hospice and Palliative Nursing, 23(2), 145–154, 2021.
• Schulz, R., Boerner, K., et al. Preparedness for death and adjustment to bereavement among caregivers of recently placed nursing home residents. Journal of Palliative Medicine, 2015.
• Practical and emotional preparedness and psychological distress among family caregivers in end-of-life care. Cancers, 17(8), 1380, 2025.
• Centers for Medicare & Medicaid Services. Medicare hospice benefit, including inpatient respite care. Medicare.gov.
• Family Caregiver Alliance. Caregiver statistics: demographics. caregiver.org.
• López-Anuarbe, M., & Kohli, P. Analysis of National Study of Caregiving data on male caregivers. Connecticut College, 2019.
• National Alliance for Caregiving & United Hospital Fund. Young Caregivers in the U.S., 2005; research on youth caregivers by M. S. Kavanaugh and the American Association of Caregiving Youth.
• U.S. Department of Labor. Family and Medical Leave Act. dol.gov.