Caregiving

Caregivers support many people with primary biliary cholangitis (PBC). Spouses, partners, family members, and friends are often caregivers. Every PBC caregiver has a different experience.

Caregiving can be a meaningful role that enriches your life and relationship. It can also be a demanding role with hard times. This article covers some common experiences of PBC caregivers. Talk to the healthcare team about supporting your loved one and yourself. ¹

Getting prepared: What’s next?

As a caregiver, you may work closely with doctors and nurses. Stay in close contact with the healthcare team. Ask questions and take notes during doctor’s visits. Learn as much as you can about PBC and its treatments.¹

Caregivers often know the most about what is happening. You may be able to help doctors understand your loved one’s needs. You may also be able to help your loved one manage PBC.¹

Your role as a caregiver depends on the severity of PBC. People with early stages of PBC may need minimal support for years. The focus may be helping to maintain a healthy diet and exercise routine. People with later stages of PBC may need more support with daily tasks.^1,2

Caregivers often help with:^1,2

• Doing household chores and activities, especially when your loved one is affected by fatigue
• Helping with exercise and diet to manage PBC
• Managing medical care, including tracking medication and symptoms
• Scheduling appointments and setting reminders
• Coordinating or providing transportation to appointments
• Advocating for your loved one to the healthcare team
• Monitoring for side effects of medications and reporting problems
• Talking with, listening to, and encouraging your loved one
• Helping with decisions about treatments
• Navigating insurance and financial issues
• Staying informed about community resources, available treatments, and other services

Challenges of caring for someone with primary biliary cholangitis

Caregivers play roles they were not prepared for. Learning about PBC and treatments can be overwhelming. It may take time to understand how symptoms affect your loved one. Navigating the healthcare and insurance system is complex.^1,2

Caregiving brings many people closer to their loved one. But it also comes with challenges. Some challenges of caring for someone with PBC include:^1,2

• Not knowing the best way to provide support
• Changes to your relationship because of PBC
• Changes to your daily routine that make you feel a loss of control
• Frustration when symptoms are not getting better or are getting worse
• Stress about liver test results and doctor’s appointments
• Balancing your own social and emotional needs with your caregiver role
• Finding shared activities or interests with your loved one

Communicate openly with your loved one to face these challenges. Disagreements and friction are normal. Honesty and openness can help you understand each other’s frustrations, stressors, and worries.^1,2

Coping with caregiving and preventing burnout

Coping with a PBC diagnosis and your new role is hard. Caregiving can take your focus away from your own health. You may have less time and energy to care for your own mental and physical well-being. This can lead to burnout. Symptoms of burnout include lack of energy, fatigue, and difficulty sleeping.³

Keeping yourself healthy is important. It can improve your ability to care for your loved one. Some strategies that may help with coping include:^1,3

• Finding support groups of other caregivers
• Taking time for hobbies
• Doing things that help you relax
• Maintaining exercise and a healthy diet
• Staying organized with daily routines
• Having backup caregivers in case you need a break
• Taking short breaks, even for a walk or an errand
• Looking into respite care to provide short-term relief if you cannot leave your loved one alone

During hard times, it is common to have negative thoughts. Remind yourself of your strengths and accomplishments as a caregiver. You have abilities you may not have known you had. The comfort and support you provide is special.¹

Talk to a mental health professional if you notice signs of anxiety or depression. This can include constant feelings of sadness, tiredness, or irritation. A therapist or counselor can suggest ways to manage your mental health.¹

Resources for the caregiver community

Many resources and services are available to support PBC caregivers. These tools, tips, and professionals can help you face the challenges of caregiving.

Some resources for PBC caregivers include:^1,2,4-6

• American Liver Foundation Resources
• American Liver Foundation Help Line
• PBC Foundation Workshops and Help Line
• AARP Resources
• Family Caregiver Alliance
• National Family Caregiver Association