Long-term caregiving: the basics

Long-term care rarely has an end date. Many caregivers say they stopped making plans because everything depends on the next test, the next setback or the next hospital stay.

What people often put on hold

• Hobbies, faith life or exercise
• Sleep, rest and simple fun
• Their own health appointments
• Time with friends and a partner
• Work, study or a career move

When someone depends on you, your body can stay on high alert. You may sleep lightly, check on them many times a night, or feel your heart race every time the phone rings.

In a study of family caregivers of people with dementia in their last year of life, more than half said they felt “on duty” 24 hours a day.

This “always on” state is tiring, even on days when nothing goes wrong. Feeling worn out without a clear reason is often the alertness itself.

Many long-term illnesses go in waves: weeks of steady routine, then a fall, an infection or a hospital stay. Some families go through several “this might be the end” moments.

Each emergency can use up energy you never get back fully before the next one. It is okay to feel shaky or numb long after a crisis has passed.

Just over 20% of U.S. caregivers have had formal training on medical and nursing tasks, even though more than half do them.

Feeling unsure is not a failure. It is a sign you need teaching and support. You have every right to ask for it.

Ideas

• Clear a path around the bed so you can move safely
• Keep a phone, call bell, water, glasses and tissues within easy reach
• Keep supplies in one labeled box or cart
• Put the bed where they can see a window, the family or a TV, if they want to
• Use soft lighting at night so you can check on them without waking them fully

Before someone comes home from hospital, the discharge team should check whether the home is safe and has space for equipment such as a hospital bed, shower chair or commode, and who pays for it.

Long days in bed can blur together. A loose rhythm, like curtains open in the morning, a wash, a favorite radio show, a visitor in the afternoon, can give the day a shape.

Ways to protect dignity

• Ask before you help: “Would you like me to…?”
• Close the door or curtain for personal care
• Keep up the things that make them “them”: news, prayers, jokes, nail polish, the sports results
• Offer small choices: which shirt, which music, wash now or later
• Talk to them, not about them, when others are in the room

Ideas

• Fresh air through an open window, or time by a sunny window
• Looking through photos together
• Music, audiobooks or recorded messages from family
• Reading aloud, praying together or simply sitting close
• Short visits from friends, even by video call

You do not have to fill every minute. Quiet company is a kind of care too.

Risk is higher for people who

• Are underweight
• Have had a pressure sore before
• Have less feeling or pain sensation
• Have poor circulation or fragile skin
• Have swollen, sweaty or broken skin
• Have trouble moving
• Were seriously ill in intensive care, or recently had surgery

Sores often form on bony areas such as the heels, elbows, hips and the base of the spine (tailbone).

Early signs

• A patch that does not change color when you press it. It may look red on white skin, or purple or blue on black or brown skin
• A patch that feels warm, spongy or hard
• Pain or itching in one area

Changing position regularly, using specially designed mattresses and cushions, checking skin daily, staying active if possible and eating a balanced diet all help prevent pressure sores.

A 2026 review of the research found no clear evidence that one turning schedule or one position works best for everyone. It says the choice should depend on the person’s condition, comfort, wishes and how much they can move themselves.

Contact a doctor or nurse urgently if you notice

• A high temperature
• Pain that is severe or getting worse
• Pus coming from the sore
• Red, swollen skin that feels hot

If you think someone at home is at risk, you can ask their doctor for a pressure sore risk check, so a care plan can be made.

If you regularly lift or move someone, get training, or ask a health professional to show you the right way.

Before someone leaves hospital, family caregivers can ask: “Have I been trained in moving them safely and preventing falls? Can the training start here, in the hospital?”

In the U.S., Medicare home health can include physical and occupational therapy at home for people who qualify. A therapist can teach you in your own space.

Equipment such as hoists, stand aids, transfer boards and slide sheets can make moving safer. Get advice from an occupational therapist, physical therapist or social worker before buying, and try it first if you can.

Medicare covers some medical equipment for home use when it is part of a home health plan.

Stop and ask for help if

• They have become heavier to move, weaker, or more unsteady
• They have fallen and you are not sure whether to move them
• You feel pain in your back, shoulders or wrists while moving them
• You have been shown a method that doesn’t work in your home

Some people can’t tell you they are in pain because of illness, weakness or confusion. You know them best, so trust what you notice: a change in their face, sounds, breathing, how they move, or how they behave.

What to do

• Ask: “What can we do to make them more comfortable?”
• Tell the nurse or care team, even if you are not sure
• Write down what you see, when, and what seemed to help

Sudden confusion can show up as trouble thinking or speaking clearly, not knowing where they are, trouble paying attention, or seeing or hearing things that aren’t there. It can have many causes, such as an infection.

While help is on the way

• Don’t ask lots of questions
• Don’t stop them moving around unless they are in danger
• Stay with them
• Tell them who you are and where they are, and keep reassuring them
• Use simple words and short sentences

Ways to comfort

• Ask what would help right now
• Don’t rush to say “Don’t think like that”
• Listen more than you talk. “That sounds really scary.”
• Offer a chaplain, faith leader or someone they trust
• Sit close, hold a hand if they like touch

People with a serious illness often worry about being a burden. Hearing that you choose to be there, out of love, can ease that fear.

Ideas

• Debrief with a friend after a hard night
• Slow your own breathing before you speak. Calm is catching
• Step out for a few minutes if you need to, then come back
• Talk to a nurse, social worker or chaplain about what you saw

Half of employed U.S. caregivers say caregiving has disrupted their work, such as arriving late or leaving early.

The Caregiver stress & burnout guide explains unpaid job-protected leave (FMLA) and how to talk with your employer. Here are a few extra ideas for the long haul.

Ideas

• Ask about a predictable flexible schedule, not just emergency days off
• Check whether your workplace has a free Employee Assistance Program (EAP)
• Keep a short “care update” you can give your manager, so you don’t have to explain each time
• Use leave in blocks during hospital stays, and save some for later

Every U.S. state offers some kind of self-directed Medicaid program for long-term care, which can let eligible people choose who cares for them, sometimes including family. Names and rules differ by state.

Other options to ask about

• A written care agreement, if the person can pay you (get legal advice and keep records)
• Long-term care insurance, if they have a policy (check whether it pays family)
• Paid family leave, which some states offer
• VA caregiver programs, if the person is a veteran

About 11.2 million U.S. family caregivers receive some payment for their care.

Ideas

• Give simple, honest updates in words that fit their age
• Let them help in small ways if they want to, like choosing music or drawing a card
• Protect a little one-on-one time, even ten minutes at bedtime
• Tell their teacher or school counselor what is going on at home
• Watch for children taking on too much care themselves

Nearly half of U.S. caregivers have had at least one major financial impact from caregiving, such as taking on debt.

First steps

• Ask family members to share costs, not only tasks
• Ask the hospital or agency social worker which benefits the person might qualify for
• Don’t quietly drain your own retirement savings without advice
• Keep receipts for care costs in one folder

The Eldercare Locator is a public service of the U.S. Administration for Community Living. You can call or text 1-800-677-1116, or chat online with trained staff.

It helps you find services in your community that help older adults live well and independently at home, and support for the people who care for them.

Family Caregiver Alliance (FCA) has supported family caregivers of adults with physical and cognitive conditions for over 40 years. Its toll-free number is 800-445-8106.

What you can find there

• CareNav, a tool that gathers services and resources in one place
• Fact sheets on hospital discharge, family meetings and more
• Services listed by state
• Support groups, online and in person

Medicare home health covers part-time or occasional skilled nursing, physical, occupational and speech therapy, and medical social services for people who are homebound and qualify. A home health aide can help part-time, but only alongside skilled care. Covered services cost nothing.

It does not cover

• Care around the clock (24 hours a day)
• Housekeeping or errands that are not part of the care plan
• Personal care alone, if that is the only care needed

The Serious illness & facing the end of life guide explains palliative care and hospice. One part families often don’t know about: Medicare hospice includes short-term inpatient respite care, arranged by the hospice team, to give caregivers a rest.

Many long-term caregivers turn help down: “It’s easier to do it myself.” “No one does it right.” “I don’t want to be a burden.” Over years, this can leave you alone with a load no one person can carry.

Ideas

• Accept “good enough” help, even if it isn’t your way
• Keep a ready list of jobs anyone could do
• Say yes to the next offer, even a small one
• Set up a shared online calendar so helpers can sign up for regular slots
• Write simple instructions once, so helpers can step in

Common causes

• A parent favors the child who helps least, or snaps at the one who helps most
• Disagreement over big choices, like moving to a care facility
• One person slowly ends up doing almost everything
• Siblings slip back into childhood roles and rivalries

Before meeting, share the same information with everyone, such as doctor notes or discharge summaries. Ask each person what they are willing and able to give right now. Treat the plan as a work in progress and review it regularly.

Ground rules

• Focus on now, not old hurts
• Listen to everyone
• Set an agenda and stick to it
• Share your feelings instead of blaming

Give relatives who live far away specific jobs, such as regular check-in calls or researching services.

More long-distance jobs

• Coming to stay for a week so you can rest
• Handling bills, insurance calls or paperwork online
• Keeping the wider family updated
• Paying for respite or a cleaner

A social worker, counselor or trusted outside person can run a family meeting and make sure everyone is heard. A care manager can help make a working care plan and divide tasks.

Ideas for friends and neighbors

• Drop off a meal on the same day each week
• Mow the lawn, take out the trash, walk the dog
• Offer rides to hospital visits
• Sit with the person every Tuesday so the caregiver can go out

The CDC suggests arranging regular times to check in on caregivers, and helping with errands, chores and other tasks.

Ways to support a caregiver you know

• Encourage them to get mental health support if they need it
• Help them keep their own health appointments
• Help them make and update a care plan
• Offer emotional and social support, not just tasks

Nearly 1 in 4 U.S. caregivers feel socially isolated. A regular message or visit can matter more than you think.

Many faith groups, senior centers and community groups organize visitors, meal trains or rides for families caring at home. Ask a faith leader or community center what they offer.