Challenges of Caring for Someone With End-stage Liver Disease

Caring for a loved one with end-stage liver disease (ESLD) is a demanding and emotional journey that can deeply impact caregivers' lives. From managing frequent hospitalizations to balancing work and personal life, caregivers face numerous challenges.¹

ESLD is the final, most severe phase of chronic liver disease, where the liver is extremely scarred (cirrhosis) and damaged. It can no longer perform its vital functions. Other terms used for this stage are cirrhosis (severe, permanent scarring of the liver) and liver failure. ESLD can be brought on by several things, including:^2,3

• Nonalcoholic fatty liver disease (NAFLD), including nonalcoholic steatohepatitis (NASH)
• Hepatitis B or C
• Excessive alcohol use
• Autoimmune liver diseases
• Genetic liver disorders

Here’s a closer look at what caregiving for ESLD entails. Learn some strategies to navigate this difficult path.

Day-to-day challenges

Caring for someone with ESLD is a life-changing commitment from the moment of diagnosis. For up to one-third of people with ESLD, their liver disease impacts their
daily activities.¹

Caring for someone with a long-term disease like ESLD involves many daily tasks:^1,4-6

• Giving medicines and managing side effects
• Managing symptoms like fluid build-up, fatigue, muscle cramps, and muscle wasting
• Dealing with cognitive confusion and mood swings in their loved one
• Monitoring fluid intake and output
• Managing a special diet
• Assisting with mobility and personal hygiene
• Coordinating medical appointments
• Handling insurance and medical bills
• Driving and transporting their loved one

Frequent hospitalizations

People with ESLD often require frequent trips to the hospital due to complications. These health problems include infections, bleeding, and confusion (encephalopathy). There are more than half a million hospitalizations for cirrhosis each year in the United States. These hospital visits can be stressful for both the person with ESLD and the caregiver.^1,3

Managing hospital stays involves coordinating transportation, communicating with healthcare providers, and meeting patients' comfort needs. Each hospitalization disrupts the caregiver's routine and increases medical expenses. This adds to their and their loved one’s stress.^1,3

Dealing with cognitive confusion

Liver disease can lead to encephalopathy. This condition happens because of the liver's inability to properly detoxify the blood. Encephalopathy causes changes in the way the brain works, which may lead to:^1,3,4

• Confusion
• Forgetfulness
• Difficulty making decisions
• Personality changes

Dealing with encephalopathy in a loved one is very challenging. Caregivers must remain patient and provide clear and simple instructions. They should also create a safe environment to prevent accidents and injuries.³

There are limited treatment options for encephalopathy. But these things can help:³

• Avoiding dehydration and electrolyte imbalances
• Maintaining good nutrition
• Eating small meals throughout the day
• Taking any medicines prescribed by the patient’s doctor to avoid encephalopathy

Balancing caregiving with work and life

Balancing caregiving duties with work and personal life can be overwhelming. Caregivers often struggle to maintain their work and family responsibilities while providing constant care.^1,4,5

This balancing act can lead to exhaustion, financial problems, and isolation. To avoid burnout, caregivers must seek support from family, friends, or professional services to get the help they need.^1,4,5

Emotional challenges

The emotional toll of caregiving can be profound. Watching a loved one’s health decline is heart-wrenching. It can lead to feelings of sadness, anxiety, and helplessness.^1,4,5

The uncertainty of a loved one’s prognosis is a big source of distress as well. Another source of anxiety and depression among caregivers and families is waiting for a liver transplant.^1,4,5

Caregivers often experience anticipatory grief (grief before a death) as they prepare for the potential loss of their loved one. Seeking emotional support through counseling, support groups, or therapy can help you manage these feelings.^1,4,5

Physical challenges

The physical demands of caregiving are significant. Tasks such as dressing, bathing, and moving your loved one can lead to physical strain and injuries. Be sure to use proper techniques to prevent injury. Consider assistive devices to help with daily life, such as:⁴

• Ramps
• Walkers
• Wheelchairs
• Shower seats

Consider palliative care

There may come a time when focusing solely on curative treatments might no longer be effective or in the best interest of your loved one. This is where palliative care comes into play.^3,4

Palliative care is personalized care that aims to improve the quality of life for people with serious health conditions and their families. It addresses physical, emotional, social, and spiritual needs.^3,4

Palliative care should be considered at various stages of ESLD, not just at the end of life. It can be introduced early in the disease process alongside treatment. It should be intensified as the disease progresses.^3,4

Here are some signs that it might be time to consider palliative care:^3,4

• Frequent hospitalizations
• Uncontrolled symptoms
• Declining ability to perform daily activities
• Family stress
• Limited treatment options

Strategies for coping with caregiving

To effectively manage caregiving and avoid caregiver burnout, try the following:^4,6

• Ask questions – Don’t be afraid to ask “dumb” questions. Caregivers have to grapple with a lot of information, and it is easy to get confused. Make sure you maintain consistent communication with your loved one’s healthcare team.
• Educate yourself – Learn about ESLD, its symptoms, and its treatments. Being informed helps you make better caregiving decisions. The more empowered you are with knowledge, the better you can manage the care of your loved ones.
• Get organized – Keep a detailed schedule of medical appointments, medicine schedules, and other essential tasks. Put all health information and documents in one place so they are easy to find, access, and take with you to appointments.
• Seek help – Don’t hesitate to ask for help from family, friends, or professional caregivers.
• Take breaks – Taking breaks helps prevent burnout and maintains your overall well-being.
• Self-care – Maintain your health by eating well, exercising, and getting enough sleep. Caregiver health is crucial to providing effective care.
• Join support groups – Connecting with other caregivers can provide emotional support and practical advice.