Caregiver stress & burnout

Caregiving sometimes starts, or suddenly gets much bigger, after a fall or a hospital stay. Moving someone from one care setting to another is stressful for everyone, and changes are often announced at short notice, before families feel ready.

Family caregivers are often expected to take on medical or nursing tasks at home afterwards, sometimes with little training. That can feel frightening.

What helps

• Talk to the hospital’s discharge planner or social worker as early as you can
• Ask for hands-on training for any care tasks you’ll be doing
• Ask whether short-term home health help is available
• Line up two or three people for the first week home

With conditions that get worse over time, a day may come when more skilled care is needed. Cleveland Clinic suggests learning about the condition and planning ahead, including for possible nursing services or assisted living.

These decisions often bring guilt, grief and family disagreement, even when the move is the safest and most loving choice. Choosing more help is not giving up on someone.

What helps

• Talk early, while the person can still share their wishes
• Gather facts: costs, options and what each place offers
• Share the decision with family or a care manager, so it isn’t all on you
• Remember: you are still their caregiver, even when others help with daily care

For many caregivers, the holiday season brings stress, frustration and anger instead of peace. Preparations are tiring on top of daily care, and seeing relatives can stir up resentment if they haven’t been helping.

Noisy, crowded gatherings can also be hard for the person you care for, especially if they live with dementia.

What helps

• Tell relatives honestly how things are, so they have a chance to help
• Ask for something specific, like a Saturday off on a set date
• Choose the simplest, least tiring plans, or let someone else host
• Set up a quiet room the person can rest in

Home health services or private care aides can come to your home for short visits. Some agencies offer respite visits so you can step out.

Tips

• Start with a short visit so your loved one gets used to the helper
• Leave a simple sheet with routines, contacts and likes or dislikes
• Use the time for you, not just more chores

Adult day programs give older adults a safe, social place to spend the day, while caregivers work or rest. Your local Area Agency on Aging can tell you what’s nearby.

Some nursing homes and assisted living places offer short-term respite stays. This can give you a longer break, or cover you if you are sick or need to travel.

People often want to help but don’t know how. Name a specific task or time: “Can you sit with Dad on Tuesday from 2 to 5?” A shared online calendar lets people sign up for regular slots.

Easy things to ask for

• A meal once a week
• A ride to an appointment
• An hour of company so you can nap or go out
• Picking up groceries or doing laundry

Places to start

• Eldercare Locator: a free public service of the Administration for Community Living. Call or text 1-800-677-1116, or search online by location, to find local services for older adults and their families.
• ARCH National Respite Network: its respite locator helps you find respite providers and programs in your area.
• Veterans: the Department of Veterans Affairs offers respite resources for veterans and their spouses.
• Condition-specific groups, such as national dementia, cancer, heart or lung organizations, often have caregiver help lines and resources.

The National Family Caregiver Support Program, run through the U.S. Administration for Community Living, funds training, counseling, respite and other services for family caregivers. The Lifespan Respite Care Program works to expand the availability and quality of respite.

You reach these services through your local Area Agency on Aging. The Eldercare Locator (1-800-677-1116) can connect you.

The Family and Medical Leave Act (FMLA) lets eligible workers take up to 12 weeks of unpaid, job-protected leave in a 12-month period. Reasons include caring for a child, parent or spouse with a serious health condition. Your group health insurance continues during leave.

You are usually eligible if you

• Have worked for the employer for at least 12 months
• Worked at least 1,250 hours in the 12 months before leave
• Work where the employer has at least 50 employees within 75 miles

Leave can also be taken for the birth or adoption of a child, and longer leave (up to 26 weeks) is available to care for a seriously injured or ill service member. Your state may offer extra protections, so check with your state labor office.

Six in ten family caregivers have a job too. Talking with your employer about your limits and need for flexibility can help. Ask about flexible hours, working from home on some days, or leave options. Many workplaces also have a free, confidential Employee Assistance Program (EAP).

A care plan puts everything in one place: health contacts, daily routines, appointments, and who helps with what. It makes it easier for others to step in, and frees up space in your head.

What to include

• Doctors, care team and emergency contacts
• Daily routines, likes and dislikes
• Up-to-date health history and allergies
• Who covers which tasks and days
• An emergency plan, in case you must leave home quickly

Rules and programs vary by state, so start local. The Eldercare Locator can connect you to your Area Agency on Aging, which knows about meals, in-home help and other services for older adults.

If you care for a child with a disability, the Social Security Administration has information on benefits for children with disabilities, and the Administration for Community Living has resources for families.

When you are tired and stressed, everything feels harder. Regular meals, enough sleep and some movement give your body a better chance to cope.

Small steps

• Keep a regular sleep time when you can, and limit screens before bed
• Keep easy, healthy snacks and water nearby
• Take a 10-minute walk, even around the block
• Go to your own doctor visits, and see a provider when you’re sick

Other people often don’t realize what you need. Be specific about the task and the time. And practice saying yes when someone offers, and no to extra jobs you can’t take on.

Try saying

• “Could you pick up the kids on Thursdays?”
• “Would you sit with Mom on Saturday morning so I can rest?”
• “I can’t take that on right now, but thank you for asking.”

Caregiving can slowly take over your whole identity. Keeping up interests, hobbies and friendships reminds you that you are a whole person, not just a caregiver.

Ideas

• Music, gardening, reading, prayer or crafting
• A weekly call with a friend
• A short daily ritual, like morning coffee outside

Slow breathing, meditation, yoga, time in nature and music can help your body switch out of “alert” mode. Even a few minutes count.

A 1-minute reset

1. Put your feet flat on the floor.
2. Breathe in slowly through your nose for 4 counts.
3. Breathe out slowly for 6 counts.
4. Repeat 5 times, and notice your shoulders drop.

Talking with someone you trust can lighten the load. This could be a friend, relative, counselor, social worker, or a caregiver support group.

Kinds of support

• Talk therapy with a counselor or psychologist
• Group therapy or caregiver support groups
• Family meetings to share tasks more fairly

Many caregivers expect themselves to do it all, perfectly. Health experts suggest the opposite: know your limits, build a routine, accept help, and let some things go.

Try this

• Pick the 3 most important tasks for today
• Move one task to “later” or “someone else”
• Notice one thing you did well

Some days a real break is not possible. Short pauses still help your body switch out of “alert” mode. Slow breathing, music, stepping outside or a few minutes of stretching all count.

Try

• A cup of tea by a window
• Five slow breaths before you answer a call
• One song, played start to finish
• Two minutes outside in fresh air

Practice saying yes when someone offers help, and no to extra jobs you can’t take on. Believing you are the only one who can do it is a common cause of caregiver burnout.

Try saying

• “I can’t take that on right now, but thank you for asking.”
• “Could you handle that this time?”
• “Let me check what I already have this week.”

Talk therapy, group therapy and caregiver support groups can all help you carry the load. Be honest with your provider about how you are really doing. They can only help with what they know.

Call the Eldercare Locator at 1-800-677-1116, text, or search eldercare.acl.gov to find your local Area Agency on Aging. The ARCH National Respite Network’s locator at archrespite.org lists respite providers by area.

Call or text 988 to reach the 988 Suicide & Crisis Lifeline, or chat at 988lifeline.org. 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.