Family caregivers

Raising any child takes a lot of energy. When a child has a disability, a long-term illness, or mental health or behavior needs, there are often more appointments, more phone calls, more planning and more worry. Many parents become experts in their child’s needs almost overnight.

What can help

• Learn about your child’s condition so you can plan ahead and ask good questions
• Focus on what your child can do, and celebrate small wins
• Let your child answer questions for themselves when they can
• Keep their health records up to date in one place
• Make time for your partner and for any other children, too

Brothers and sisters can feel left out or worried. A few minutes of one-on-one time with each child helps everyone feel seen.

Many adults find themselves helping an aging parent with shopping, rides, bills, meals or bathing. Sometimes it starts small and grows slowly. Sometimes it starts all at once, after a fall or a hospital stay.

Caring for someone with memory loss, such as dementia, can be especially hard. The person you love may change in ways that are painful to watch. Caregivers of people with dementia are at higher risk of anxiety, depression and a lower quality of life than other caregivers.

What can help

• Find out what is available nearby through the Eldercare Locator (1-800-677-1116)
• Make a care plan with your family, so tasks are shared
• Look into adult day programs or in-home help to get regular breaks
• Learn about the condition so changes are less of a shock

For more on role reversal and planning care in later life, see Independence & care in later life. If memory loss is part of the picture, the dementia care guides go deeper.

When a partner becomes ill, the relationship can shift. You may go from equal teammates to one person doing most of the caring. You may also lose the person you used to lean on when things got hard.

Health experts call this “role confusion”: it can be hard to separate being a caregiver from being a husband, wife or partner. That can bring up grief, loneliness, and even resentment, all at the same time as love.

What can help

• Protect some time that is just “partners,” not “patient and carer”, even a short walk or a show together
• Let friends and family take some tasks so you can rest
• Talk with a counselor or join a caregiver support group
• Keep up at least one friendship or hobby that is yours

Some children and teens help care for someone at home. They may cook, clean, look after younger brothers and sisters, or keep an eye on a parent who is unwell. Many are proud of the help they give. They can also feel tired, worried or alone.

Young carers can find school harder, especially if they miss days or feel too worried to focus. Some feel embarrassed and keep it secret, which makes it harder to get help.

If you are a young carer

• Tell a trusted adult, like a teacher, school counselor, relative or coach
• You still deserve time to play, rest, see friends and do schoolwork
• Young carer groups let you meet others who understand, without judging
• None of this is your fault, and you are not expected to fix it

The Kids & family changes guide has a full section on young carers, for kids, teens and the adults around them.

Some people are “sandwiched” between two generations: they raise children and care for an aging parent at the same time. About one in four people who care for someone with dementia are also caring for at least one child under 18.

Many sandwich caregivers also work. Six in ten family caregivers have a job on top of caregiving, and half of them say it affects their work, like coming in late or leaving early.

Chronic illnesses last a long time and often have ups and downs. Caregivers may help with appointments, meals, rides, paperwork and keeping track of symptoms, sometimes for years. The long, unpredictable road is part of what makes it tiring.

Learning about the condition helps you plan ahead. With conditions that get worse over time, it helps to talk early about what will happen if more skilled care is needed later.

What can help

• Keep a care plan with contacts, routines and health history in one place
• Ask the care team questions until you understand
• Connect with national groups for that condition, many have caregiver resources
• Plan regular respite, so the long road doesn’t empty you

Caring for someone whose struggles are mostly on the inside can be lonely. Others may not see how much you are carrying. You may worry about their safety, feel unsure what to say, or feel hurt by things they do when they are unwell.

What can help

• Learn about what they are going through from trusted sources
• Encourage them to see a clinical provider or therapist, and offer to help find one
• Set kind but clear limits to protect your own health
• Find a family support group, so you are not doing this alone

The guide “When someone in your family is struggling” has tips for each kind of relationship, and for setting limits.

Caregivers often carry a long, invisible to-do list: appointments, forms, ordering supplies, bills, who is covering which day. Even when your hands are free, your mind is still working. That constant tracking is tiring in its own way.

What can help

• Get it out of your head: a written care plan or a shared calendar
• Give whole jobs to others, not just tasks (“You handle all the insurance calls.”)
• Set one time a week to plan, so you aren’t planning all day

Many caregivers sleep lightly, keep the phone close, and jump at every sound. When you are never fully off duty, your body’s stress system never fully switches off. Nearly 1 in 4 U.S. caregivers give 40 or more hours of care a week.

What can help

• Plan respite, even a few hours a week, where someone else is truly on call
• Use those hours to rest, not just catch up on chores
• Calm your body with slow breathing when you can’t leave

Caregivers often put on a brave face so the person they care for, or their children, don’t worry. Holding feelings in all day is draining. Feelings that never get out tend to build up as stress, irritability or tears that come “out of nowhere.”

What can help

• Have one place where you don’t have to be okay: a friend, a group, a journal or a counselor
• Name the feeling to yourself, even silently
• Remember that difficult feelings are normal for caregivers

Over time, many caregivers drop hobbies, friendships and plans. It can feel like there is no “you” left outside the caregiving role. Keeping even small parts of your own life helps protect your mental health.

What can help

• Keep one interest that is just yours, even for 20 minutes a week
• Stay in touch with one friend who knows you outside caregiving
• Ask yourself: what did I enjoy before this started?

Caregiving can quietly cost money, career chances and health. Nearly half of U.S. caregivers have had at least one major money impact, half of working caregivers say caregiving disrupts their work, and 1 in 5 say their own health is fair or poor.

The Caregiver stress & burnout guide covers job-protected leave, local services and talking with your employer.

When a child and a parent both need you, it can feel like you are always letting someone down. That feeling comes from the size of the load, not from a lack of love.

What can help

• Plan a short break that is truly yours, and put it on the calendar
• Set realistic goals: pick the 3 most important tasks each day
• Share whole jobs with others, like “all the pharmacy runs” or “Saturday pickups”
• Write down every task for a week, then see what others could take on

Children notice when a grandparent is ill or a parent is stretched thin. Simple, honest words about what is happening help them feel safe. Keeping up normal routines like school, play and friends protects them too.

What can help

• A few minutes of one-on-one time with each child
• Include older kids in small, fair ways, and explain what is going on
• Make sure no child is carrying adult jobs at home
• Tell their school if things are hard at home, so teachers can support them

Nearly half of U.S. caregivers have had at least one major money impact, such as taking on debt. AARP estimates that family caregivers spend roughly $7,200 a year of their own money on care.

What can help

• Ask your workplace about flexible hours, leave or an Employee Assistance Program (EAP)
• Ask your local Area Agency on Aging about services that cost little or nothing
• Talk openly with siblings about sharing costs as well as tasks

When every spare hour goes to kids and a parent, couple time is often the first thing to go. Family experts suggest making time for your partner and for any other children, too, even in small ways.

Small ways to stay close

• A 10-minute check-in after the kids are in bed
• A short walk together while someone else covers care
• Deciding together which caring jobs each of you will own

Having someone to rely on was linked to lower odds of mental health struggles in parents and caregivers. Support groups can also ease the isolation and fear many caregivers feel.

Ideas

• A neighbor or friend who can do one school run a week
• A caregiver or parent support group, online or in person
• A family meeting to share out tasks more fairly
• A faith community, community center or parent group

Before someone comes home from a hospital or rehab, ask for hands-on training for any care tasks you will be doing. Talk to the discharge planner or social worker as early as you can.

Questions to ask

• Can you show me, and then watch me do it once?
• What should I do if something looks wrong?
• Is short-term home health help available?
• Who do I call after hours?

Keep health records up to date in one place, along with doctors, care team and emergency contacts. It makes it easier for others to step in, and frees up space in your head.

What to include

• Allergies and health history
• An emergency plan, in case you must leave home quickly
• Daily routines, likes and dislikes
• Doctors, care team and emergency contacts

Care teams are busy, and medical words can be confusing. Ask the care team questions until you understand. Learning about the condition helps you plan ahead and makes changes less of a shock.

If a task feels beyond you, say so. It’s okay to say, “I’m not ready to do this alone yet. What other help is there?” Short-term home health help, a visiting nurse or a family member may be able to share it.

Guilt is one of the most common caregiver feelings. Many feel guilty when they take time for themselves, when they lose patience, or when they can’t fix things.

Ways to ease guilt

• Ask: would I judge a friend this harshly?
• Remember that rest helps you care better, not worse
• Set realistic goals. You can’t do everything, and that’s okay
• Talk it out with someone safe

You can grieve someone who is still alive. You may miss the way your parent used to be, the partner you used to lean on, or the future you pictured for your child. This kind of grief is real, even if others don’t see it.

What can help

• Name the loss: “I miss our old talks.”
• Make space for small moments of joy that are still possible
• Talk to others who understand, like a support group
• See the “Grief: understanding loss” guide in this app for more

Anger and frustration often show up when your efforts go unnoticed, or when others in the family don’t help. Resentment can build when you give and give without a break.

What can help

• Treat anger as a signal that you need a break or more help
• Ask family for specific help, not just “help”
• Step away for a few minutes to breathe before reacting
• Talk with a counselor about what is building up

Many caregivers worry that a mistake could harm the person in their care, or fear what the future holds. Learning about the condition and making plans can calm some of that fear.

What can help

• Write down a care plan, so you aren’t holding it all in your head
• Make an emergency plan with your loved one
• Ask the care team questions until you understand
• Plan ahead for changes, such as more help later on

Nearly 1 in 4 U.S. caregivers feel socially isolated. Caregiving can eat up time with friends, and some people believe asking for help is a weakness.

What can help

• Join a caregiver support group, in person or online
• Schedule a regular call with one friend
• Keep one hobby or interest that is yours

Ways to help

• Offer something specific: a meal, a ride, an afternoon off
• Help with errands and chores
• Check in regularly, even with a short text
• Listen without judging or giving advice
• Encourage them to look after their own health and get support if they need it
• Help them make a care plan

Teachers and coaches can notice when a child is tired, missing school or struggling to focus. A child’s difficult behavior may be a cry for help. Gentle questions, a safe adult to talk to, and help catching up with schoolwork can make a big difference.

The CDC puts it simply: self-care isn’t selfish. To keep being a good caregiver, you need to take care of yourself too. Even a few hours of break a week can improve well-being.

Believing that asking for help is weak is one of the things that leads to caregiver burnout. Pediatricians say the same about parents: asking for support is not weakness, it’s the opposite.

Anger, guilt, frustration and resentment are common caregiver feelings. They don’t make you a bad caregiver. They are signs you need more support or rest.

Feeling irreplaceable is a common cause of caregiver burnout. Letting others take some tasks, even if they do them differently, keeps you healthy for the long road.

The Eldercare Locator is a free public service of the U.S. Administration for Community Living. Call 1-800-677-1116, text, or search eldercare.acl.gov to find your local Area Agency on Aging, meals, in-home help, respite and caregiver support.

Call or text 988 to reach the 988 Suicide & Crisis Lifeline, or chat at 988lifeline.org. Families can reach out too, not just the person who is struggling. You can also text HOME to 741741 to reach the Crisis Text Line.

Find A Helpline (findahelpline.com) lists free, confidential helplines by country and topic. The International Association for Suicide Prevention points people to it as well. In an emergency, call your local emergency number.