• Balancing the caregiver role with all of the other roles and responsibilities you have may take time.
• Caregivers may go through stages of emotions similar to what a patient experiences, such as denial, anger, unrealistic expectations, and grief.
• It is important for the caregiver to maintain their own health. This may feel like a delicate balancing act, but if a caregiver is exhausted or ill, they cannot care for their loved one(s). It is helpful to identify what needs to be done, who else can help, and then effectively communicate what is needed. Remember that, many times, people (other family members, friends, and community resources) are interested in helping. Friends and family may appreciate it when the caregiver asks them to help. Sometimes a caregiver may want/need to consider hiring help for periods of time.
• As a caregiver, you are faced with many challenges. While it is normal to have feelings of fear, anger, and uncertainty, it can be helpful to talk to a caring friend or family member or seek out professional assistance to help you cope.
• There is additional support available, including the PSC Partners website and social media groups, community organizations, and PSC Partners mentors, if needed.
• Some find it helpful to develop a phone/email/text tree to better and more efficiently disseminate necessary information.
• Developing strategies for handling situations that occur over time can help build your confidence and resiliency.

• As in any stressful situation, there are a number of constructive outlets that may work for you:
  • Keeping a journal
  • Going outside for even a few minutes and enjoying the fresh air, plants, clouds, and sky
  • Exercising
  • Talking with friends
  • Appreciating humor
  • Listening to your favorite music
  • Reading
  • Lying down or sitting in a recliner with your feet up for 15 to 20 minutes
  • Drinking plenty of fluids, especially water
  • Eating a well-balanced diet, and eating at regular intervals
  • Considering whether calls or visits are helpful or create more stress at that time. You can limit calls or visits to honor your own needs and private time.
  • Sharing your feelings or concerns with a trusted friend, your spiritual counselor, or your healthcare team

Individuals with PSC may experience a roller coaster of emotions, which they may have difficulty controlling. They may:

• Express anger, and/or become depressed and quieter.
• Find it difficult to express their thoughts, or may not think as clearly as they used to.
  • Liver disease can affect the brain. For example, some PSCers have brain fog, which can lead to memory issues and make it harder to pay attention and think clearly.
  • Sometimes people with advanced liver disease can develop hepatic encephalopathy (HE). The PSCer’s doctor will diagnose and prescribe treatments for HE.

• Caregivers have their own emotions, which can be hard for them to admit, perhaps because they feel, “I should be strong and able to handle this.” They may feel guilty for various reasons, including having these emotions. The caregiver may also feel like they are on an emotional roller coaster.
• In addition, caregivers may be seeking ways to maintain their primary roles, such as parent, spouse, or other family member, so that they can support and nurture ongoing relationships with all family members.
• It is challenging to deal with many emotions and competing responsibilities.

Please talk with the PSCer about the following:

• If your PSCer lives near a large university or medical center, you can request an appointment with a hepatologist and/or gastroenterologist who treats PSC patients. If your PSCer’s current doctor only treats a few PSCers, you can request a consultation with a hepatologist or gastroenterologist who cares for many PSC patients.
• Remember, you and your PSCer may need to be patient with medical providers who are not familiar with PSC, as it is a rare liver disease.
• Try to choose a medical provider with whom the PSCer and you are comfortable–a doctor who can listen and provide advice, and willingly, honestly, and intelligibly answers questions.

• Obtaining a second opinion during initial diagnosis or when a difficult scenario arises can be helpful.
• A second opinion generally means wanting more information, confirmation, and/or peace of mind.
• Most doctors will appreciate the additional review and discussion of findings from a second opinion.

• Be willing to consider changing doctors if you do not feel that the doctor is providing comprehensive care or answering your questions.

• Blood/lab test results may vary in PSCers, including variation between normal and abnormal levels. You will want to discuss the lab tests with the PSCer’s physician.
• If multiple physicians are involved, requesting that one doctor serve as a medical coordinator can be helpful. Because PSC may impact people differently, and PSCers often have other diseases, the treatment process may involve several physicians with different specialties.

Some legal documents that people with PSC should consider having are:

• Power of attorney that authorizes someone to act as a legal representative and make decisions on behalf of the PSCer
• Advance medical directive that lets the family and medical team know what medical treatments the PSCer wants if he/she is too sick to make decisions for themselves
• Statement about whether the PSCer wishes to be an organ donor
• Will that outlines what the PSCer wants done with his or her property in the event of death

Traveling is absolutely possible for people with chronic illnesses, and careful planning can assist in creating a less stressful trip. Here are a few tips:

• Consider getting travel insurance that covers your trip. Some things to consider are:
  • Review the policy’s definition for terms such as “stable” and “effective date” to ensure the policy covers your specific travel. Look to see what the policy states about “pre-existing medical conditions.”
  • Take the insurance company’s telephone number with you on your trip.
• Prepare a care package to take on trips. Some possible items may include:
  • Food items that the person ordinarily is able to eat without excessive problems
  • Medications as a carry-on
  • Additional as-needed medications, such as for nausea/vomiting, or if someone gets cholangitis, an emergency antibiotic
  • Hand sanitizer
  • Emesis/Vomit bags
  • A copy of medical information and the pertinent healthcare providers ‘ names and contact information.
• People with significant fatigue may want to contact the airline in advance and request wheelchair assistance. Some airlines also provide front seating for those with disabilities.