Caring for yourself as a long-term carer
You matter too. Looking after yourself is part of looking after them.
By the numbers
Many caregivers are worn down, and many are alone with it.
Health
Time & support
Exhaustion on the long haul
Why years of care wear you down, and what to protect first.
Short-term caregiving is a sprint. Long-term caregiving is a marathon with no finish line in sight. Nearly 1 in 4 U.S. caregivers say they struggle to look after their own health because of caregiving.
Signs the load has grown too heavy
- Small things make you snap, cry or feel numb
- You are tired all the time, even after sleep
- You feel trapped, hopeless or resentful most days
- You have stopped seeing friends or doing anything for yourself
- You keep getting ill, or put off your own health checks
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Ideas
- Ask about overnight respite or a night sitter
- Ask the care team whether night checks can be fewer
- Nap when they nap, if you can
- Share night duty with someone, even one night a week
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Ideas
- Accept meal offers, and say yes to frozen meals
- Keep easy, healthy snacks where you care
- Stretch your back after moving or lifting
- Walk around the block or the hospital, even for five minutes
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Tell your own doctor that you are a caregiver. They may know about support groups and local help.
1 in 5 U.S. caregivers rate their own health as fair or poor.
Taking real breaks
Regular time off is not a luxury. It is what keeps care going.
Even a few hours of respite a week can improve a caregiver’s well-being. The key is consistent breaks, not one rare weekend off.
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Respite can be in-home help, adult day care, or a short stay in a nursing home. It can come from family, friends, nonprofits and government agencies.
Medicare hospice includes short-term inpatient respite care, arranged by the hospice team.
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Ideas
- Ask for help with a specific task or a set block of time
- Book the same slot each week, like Tuesday afternoons
- Set up a shared online calendar so helpers can sign up
- Use the break for you, not for errands, at least some of the time
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Many caregivers find it hard to leave, even when someone else is there. You may worry nothing will be done right, or feel guilty for enjoying yourself.
Ideas
- Leave simple written notes, then trust the helper
- Start with a short break close by, and build up
- Remind yourself: rest helps me care for longer
Resentment, guilt and the loop between them
Why caregivers get stuck going round and round, and how to step out.
The Family caregivers guide explains why guilt, grief and resentment are normal. In long-term care, these feelings can feed each other in a loop that is hard to escape.
How the loop often goes
- You give and give, with little rest or thanks
- Resentment builds: at the illness, at family, sometimes at the person
- You feel guilty for resenting someone who is sick
- To make up for the guilt, you push yourself even harder
- You get more tired, and resentment grows again
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Resentment often means: “I need a break,” “I need help,” or “I need someone to see how hard this is.” Treat it like a warning light on a dashboard.
Ask yourself
- Is it the person, the illness, the situation, or someone who isn’t helping?
- What am I resenting right now, exactly?
- What one thing would ease it a little?
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Guilt can be a sign you broke your own values. But many caregivers feel guilty for things that are not wrong at all: resting, having fun, feeling tired, or not being able to fix an illness.
Ask yourself
- Did I actually do something wrong, or am I just exhausted?
- Is there a small repair I can make, or do I need to forgive myself?
- Would I judge a friend this harshly?
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Ideas
- Do one kind thing for yourself before doing one more thing for anyone else
- Hand over one task for good, not just once
- Name it out loud: “I’m in the resentment-guilt loop again”
- Take one break without explaining or apologizing
- Tell one safe person the feeling you are ashamed of
Keeping your own health and identity
You are more than “the caregiver”. Keep a thread of your own life.
After years of care, some people say they can’t remember what they used to enjoy. Keeping even a thin thread of your own life now makes it much easier to find yourself again later.
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Non-negotiables are small, regular things you keep even in hard weeks: a weekly call with a friend, your own doctor visits, a walk, a faith service, one evening off.
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Ideas that fit into care life
- A small goal, like learning ten songs on guitar
- A team, choir or faith group you attend when respite allows
- An online class or group you can join from home
- Something you can do at the bedside: knitting, sketching, reading, puzzles
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Ideas
- Have one conversation a week that is not about caregiving
- Plan small things to look forward to, even a takeout night
- Tell close people how they can best support you
If you are caring for your partner, you may miss them as a partner while still loving them as their caregiver. The Different kinds of loss guide’s section on ambiguous loss may help.
Feeling alone in it
Caregiving can shrink your world. Connection can grow it back.
Nearly 1 in 4 U.S. caregivers feel socially isolated. Long days at home or in hospital, cancelled plans and friends who don’t know what to say can all leave you feeling cut off.
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Online support groups can offer support and new ideas.
Family Caregiver Alliance lists support groups for caregivers of adults with long-term physical and cognitive conditions. Its toll-free number is 800-445-8106.
Groups linked to a specific illness, such as the Alzheimer’s Association, the American Cancer Society or the American Heart Association, can also offer support.
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Ideas
- A standing weekly phone call with one friend
- A group chat with people who “get it”
- Inviting a friend to sit with you at the bedside
- Saying yes when someone offers to visit
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People may stop asking because they are afraid of saying the wrong thing. A short, honest message can open the door again: “Things are hard right now. I’d love a call, even if we don’t talk about caregiving.”
Grieving early, and wishing it would end
Two feelings that caregivers rarely say out loud. Both are normal.
The Serious illness & facing the end of life guide explains anticipatory grief, grieving someone who is still alive. In long-term care, this grief can stretch over years, with many small goodbyes along the way.
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You may grieve the last walk together, the last meal they cooked, the last real conversation. Each loss can hit hard, even though the person is still here.
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After a long illness, many caregivers sometimes wish it would end. This usually comes from love and exhaustion: not wanting the person to suffer any more, and not being able to carry on as things are.
In a study of 217 family caregivers of people with dementia, about 72% said the death was a relief for them, and more than 90% felt it was a relief for the person who died.
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Safe people to tell
- A caregiver support group
- A counselor or therapist
- A hospice or hospital social worker or chaplain
- One trusted friend who won’t judge
When and where to get help
Signs it is time to reach out for yourself.
Talk to a doctor or counselor if
- You are drinking more, or using substances to cope
- You can’t sleep, eat or function, even when you get a break
- You feel hopeless, numb or low most days for more than two weeks
- You feel you can’t keep the person safe, or you are scared of losing control
The CDC encourages caregivers to seek mental health support when they need it, and to tell their own doctor they are a caregiver.
The Eldercare Locator (call or text 1-800-677-1116) and Family Caregiver Alliance (800-445-8106) can help you find respite, support groups and local services.
988 and the Crisis Text Line are free, confidential and open 24/7. Outside the U.S., findahelpline.com lists free helplines by country.
📝 Worksheets for this guide
Fill these in privately in the app. Your answers stay on your phone.
Sources
- AARP & National Alliance for Caregiving (2025). New Report Reveals Crisis Point for America’s 63 Million Family Caregivers (Caregiving in the US 2025)
- Centers for Disease Control and Prevention (CDC) (2024). Healthy Habits: Caring for Yourself When Caring for Another
- Medicare.gov (U.S. Centers for Medicare & Medicaid Services). Hospice care
- Family Caregiver Alliance. Family Caregiver Alliance: National Center on Caregiving
- Family Caregiver Alliance. About FCA
- BrainLine (WETA). Family Caregiver Alliance (resource listing)
- Peer-reviewed research (PubMed) (2003). End-of-Life Care and the Effects of Bereavement on Family Caregivers of Persons with Dementia (Schulz R, et al., New England Journal of Medicine)
- Administration for Community Living (U.S. HHS). Eldercare Locator
- Administration for Community Living (U.S. HHS). Contact Us
- 988 Suicide & Crisis Lifeline. 988 Suicide & Crisis Lifeline
- National Institute of Mental Health (NIMH). Help for Mental Illnesses
- Crisis Text Line. Crisis Text Line
- Office on Women’s Health, U.S. HHS. Get help now (mental health)
- Find A Helpline (ThroughLine). Find A Helpline
- International Association for Suicide Prevention (IASP). Crisis centres and helplines
This guide is for education and self-care. It is not a diagnosis or a substitute for professional care. Please talk to a counselor or clinical provider about your health. Reviewed October 2026.
