Caregiver Burnout: Signs and Real Help

What caregiver burnout looks like

Caregiver burnout is what happens when the physical and emotional strain of caring for someone goes on so long that you run out of reserves. It usually builds slowly. You may not notice it until you snap at someone you love, forget your own appointment, or realize you can't remember the last time you slept through the night.

The U.S. Office on Women's Health lists these common signs of caregiver stress:

• Feeling overwhelmed, or tired most of the time
• Sleeping too much or too little
• Gaining or losing a lot of weight
• Losing interest in things you used to enjoy
• Getting irritated or angry easily
• Feeling worried or sad often
• Having headaches or body aches often
• Feeling alone, isolated or deserted by others

The same source warns about two more signs to take seriously: making mistakes when giving medicines, and turning to smoking or heavy drinking to cope. If you see yourself in this list, you are not failing. You are carrying too much for too long, and it is time to get help.

Why caring for someone with liver disease is especially draining

Every kind of caregiving is hard. Caring for someone with end-stage liver disease has some features that make it harder.

Changes in thinking and behavior

When the liver fails, toxins can reach the brain and cause hepatic encephalopathy. NIDDK lists confusion, difficulty thinking, memory loss, personality changes and sleep problems among its effects. The person you love may say hurtful things, sleep all day and stay awake all night, or not recognize how sick they are. It can feel like living with a stranger.

Research backs up how hard this is. In a 2020 study in Clinical and Translational Gastroenterology, caregivers of people with hepatic encephalopathy carried a major burden, and their mental quality of life was lowered to a level similar to that of the patients themselves. A study of 100 patients and their caregivers found that caregiver burden was higher when the patient had had hepatic encephalopathy, even its mild, hard-to-spot form.

Waiting with no end date

Life on the liver transplant waiting list means keeping the phone on, a bag packed, and your plans on hold for months. Hope and fear take turns. There is no date to count down to.

Hospital stays and constant appointments

A review in Hepatology Communications notes that many patients with cirrhosis can't drive to their frequent appointments because of hepatic encephalopathy, and that a typical patient needs about 9 hours a week of help from family and friends. That work often collides with caregivers' jobs, adding money worries on top of everything else.

Grief that starts early

Many caregivers grieve the life they had before the illness, while also facing the chance their loved one may not get a transplant in time. If you are facing that, our page on end-of-life care in liver disease may help.

A quick self-check

This is not a medical test. It is a way to be honest with yourself. Over the past two weeks, have you:

• Felt exhausted even after sleeping?
• Skipped your own doctor, dentist or therapy visits?
• Stopped seeing friends or doing anything just for you?
• Felt angry, numb or hopeless most days?
• Had trouble keeping track of medicines or appointments?
• Used alcohol, food or sleep aids more than usual to get through the day?
• Felt that no one else could possibly help?

If you checked two or three, it is time to change something this week. If you checked more, or if you have had any thoughts of hurting yourself, reach out today. See the 988 information below.

Practical help that actually helps

Ask for specific help

"Let me know if you need anything" rarely leads to help. A specific request usually does. Keep a list of tasks others could take on, and match people to them:

• Drive to Tuesday's lab draw
• Sit with the patient Saturday afternoon so you can nap or get outside
• Pick up prescriptions or groceries
• Mow the lawn, walk the dog, or bring a meal
• Make the weekly update calls to family

The Office on Women's Health suggests letting people choose tasks they are comfortable with. People who can't do hands-on care may be glad to handle errands, bills or phone calls.

Share the load on one calendar

Put appointments, medicine schedules, rides and helper shifts on one shared calendar that everyone can see. It cuts down on calls and texts, and it makes the gaps obvious before they turn into a crisis.

Use respite care

Respite care is short-term care for your loved one so you can rest. It can be a few hours of in-home help, an adult day program, or a short stay in a care facility. To find it:

• The ARCH National Respite Network has a locator for respite providers by state.
• The Eldercare Locator, run by the U.S. Administration for Community Living, connects you to local services. Call 1-800-677-1116.
• Ask the transplant social worker and your insurance plan what respite or home health help is covered.

Join a support group

Talking with people who understand can be a relief. The Caregiver Action Network offers free resources, peer support and a Caregiver Help Desk at (855) 227-3640. Many transplant centers also run their own groups for patients and caregivers.

Make hospital stays easier on yourself

Hospital stays are where many caregivers wear down fastest. You don't have to be at the bedside every hour. Ask the nurses when doctors usually round, and try to be there then. Go home or to your hotel to sleep when you can. Keep one notebook for questions, test results and the names of the people caring for your loved one, so you are not holding it all in your head. Choose one family member to send updates to everyone else, so your phone is not ringing all day.

Talk to the transplant social worker

The social worker is there for the family, not just the patient. They can help with leave paperwork, lodging, finding backup caregivers, and referrals to counseling. Tell them honestly how you are doing. If your center requires a caregiver plan, our guide to liver transplant caregiver requirements explains how to build one with backups so it doesn't all fall on you.

Your mental health matters too

Depression and anxiety are common in caregivers, and they are treatable. If low mood, worry or trouble sleeping lasts more than a couple of weeks, talk with your own doctor or a counselor. Many employers have an employee assistance program that offers a few free counseling sessions.

If you are in crisis, call or text 988, or chat at 988lifeline.org. The 988 Suicide & Crisis Lifeline is free, confidential and open 24 hours a day. You do not have to be suicidal to call; it is also for people in emotional distress.

Protect your own health

Caregivers often put their own health last. The Office on Women's Health recommends keeping up with your own doctor visits and telling your provider that you are a caregiver. A few habits help:

• Keep your appointments. Put your own checkups, screenings and prescriptions on the shared calendar, and ask a helper to cover those hours.
• Move a little every day. A 10-minute walk counts.
• Eat real meals. Hospital vending machines are not a diet. Accept the casseroles.
• Protect your sleep. If nights are broken, trade night shifts with a helper.
• Stay connected. One phone call with a friend a week is worth protecting.

You can't pour from an empty cup. Taking care of yourself is part of taking care of your loved one.

Talk to someone who has been there

National Friends was founded by a liver transplant recipient, and many of us have been caregivers too. If you need someone who understands the waiting, the hospital stays and the fear, talk to someone who has been there. More resources are in our Caregiver Hub and the caregiver guide to the waiting list.