PSC Partners Seeking a Cure supports the very special people who become caregivers for individuals with PSC. Together with the patient and health care professionals, caregivers are a vital part of the team. While every PSC situation is different, we are all together in the fight, and we hope the information in this section proves helpful to our dedicated caregivers.
Support for Caregivers
Caregivers in the PSC Partners network contribute advice and garner support in a variety of ways, including:
- Joining the Facebook PSC Partners Open and Private Support Groups
- Attending our annual Patient and Caregiver Conference, and other events
- Connecting with others to share practical knowledge through our mentor program, other support groups, and more
- Following us on social media
- Many PSCers manage their illness, with their caregivers serving in a support role (e.g., record keeping).
- Some with PSC may rely on their caregiver to play a more active role in managing their illness, such as organizing medications, scheduling appointments, etc.
- Caregivers of pediatric patients have the unique role of being both parent and PSC caregiver for their child. The parental caregiver role may change as their child with PSC grows and goes through the stages of child development, as well as depending on how PSC is impacting their child, which can vary over time.
Remember the Rest of the Family and Yourself
- 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, there are people (other family members, friends, and community resources) interested in helping. Friends and family may appreciate 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.
Other Stress Relievers
- 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 enjoy the fresh air, plants, clouds, and sky
- Talking with friends
- Appreciating humor
- Listening to your favorite music
- 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 if 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
Our Stress Management page includes helpful information and personal stories to help combat stress.
The PSCer - Caregiver Relationship
It may be hard to see how PSC impacts someone you care about. Understanding PSCer's reactions to this rare disease may help caregivers better understand, communicate with, and support the PSCer.
Common PSCer Reactions to the Illness
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 more quiet.
- 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. This symptom can make it harder to pay attention, more difficult to think clearly, and more frequent memory issues.
- Sometimes people with advanced liver disease can develop hepatic encephalopathy (HE). The PSCer's doctor will diagnose and prescribe treatments for HE. For more medical abbreviations, click here.
Common Caregiver Reactions to the Illness
- 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 a variety of 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, for example, their role of parent, spouse, or other family member, so that they can support and nurture on-going relationships with all family members.
- It is challenging to deal with many emotions and competing responsibilities.
Suggestions to Reduce Conflict and Stress
Supporting the PSCer while maintaining everyone's usual daily life to the fullest extent possible is a beneficial goal.
- It can be helpful to avoid words or expressions like, “We understand,” or “I know how you feel.” Although the caregiver loves and cares for their PSCer, those who do not have PSC cannot fully understand what the PSCer is experiencing and enduring.
- A gift the caregiver can give to everyone, and especially to their PSCer, is to be a good listener. It is helpful to reflect back and use the words the PSCer is saying; for example, “I hear you saying you're in a lot of pain today, how can I help?” Careful listening builds a supportive environment and helps the individual know that they are being heard.
- Some stress can be expected in the relationship between the caregiver and the PSCer. Good communication skills can help lessen this occurrence. One positive strategy can be the use of “I” instead of “You.” For example, “I would like to see if we can work out a plan," or “May I ask if you can help with...?” tends to promote cooperative problem solving.
- The PSCer may feel bad about how their disease has impacted your life. By taking care of yourself, through a hobby, regular exercise, taking an extra vacation day from work, etc., you are not only recharging yourself, but you also may be lessening possible guilty feelings held by the PSCer.
- PSC is an evolving situation that can change. The caregiver and the PSCer are living a “new normal” life, adapting to manage the situation the best they can.
Remember that the PSCer and the caregiver(s) are a team.
Our Stress Management page includes helpful information and personal stories to help combat stress.
Why Learning More About PSC is Important
It is important for caregivers to educate themselves about PSC on many levels, including:
- Understanding the physician's explanation, education, and treatment plans
- Comprehending the experience being faced by the PSCer
- Having the ability to talk with the PSCer about their illness
- Becoming a well-informed support person and advocate
How You Can Educate Yourself About PSC
There are many ways to learn about PSC, including:
- Reading information on the PSC Partners Seeking a Cure website
- Talking with other PSCers and caregivers about their experiences via the patient support page on Facebook
- Additional information sources include:
- Use care when searching the internet. Too much information can be overwhelming, some of which may be inaccurate or not applicable.
- Remember that everyone with PSC has a different path.
- Keep in mind that PSC is rare, and some family practitioners or internal medicine physicians may not have experience caring for someone with PSC. You may want to suggest to your PSCer that requesting a consultation with a hepatologist (liver specialist) or a gastroenterologist (a physician for specific gastrointestinal tract diseases) who specializes in caring for those with PSC would be beneficial.
Understand Patient Benefits and Rights
- For those with advanced PSC, it may be necessary to apply for social security and/or state disability benefits. See the Insurance Issues page on this site.
- Check the Social Security website for more information. (See link on Insurance Issues page.)
- In the event it does become necessary to apply for disability benefits, ensuring the accuracy of that documentation will be very important
- Social security has specific definitions of disability for adults and children
- There are several things to keep in mind regarding patients' rights, including:
- Many medical practices have a patient bill of rights
- You can request a copy of your medical records
- Good communication between the patient and medical team is important to build trust and understanding
- What is informed consent?
- Informed consent is the process in which the physician discusses the purpose, benefits, and potential risks of a medical treatment or surgery, so the patient can ask questions and make a choice that is best for them.
- What if the patient or caregiver has questions or concerns?
- Many medical groups and hospitals have social workers who can help if you have questions or problems.
- Hospitals employ patient advocates who can help with billing and insurance questions, and some may be able to assist with investigating complaints or acting as a liaison between the patient and their family, and the hospital.
- The PSC Partners Patient Facebook Support Group. This resource is a vital patient and caregiver tool that provides support and allows for information exchange. Through this group, people in the PSC community discover that there are others who get it.
- PSC Partners brochures, Living with PSC and Pediatric PSC (available on our brochures page)
Remember, the goal is not to become an expert, but rather to maintain an awareness, to learn what you need to be an educated, supportive caregiver, and to help deal with issues without being overly consumed.
Caregivers and Medical Providers
Choosing Medical Providers
Please talk with the PSCer about the following:
- If your PSCer lives near a large university or medical center, you can ask for 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 a larger number of 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 is able to listen as well as provide advice, and willingly, honestly, and intelligibly answers questions.
Get a Second Opinion
- 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 Change Doctors
- Be willing to consider making a change in doctors if you do not feel that the doctor is providing comprehensive care or answering your questions.
Understanding Labs and the Treatment Process
- 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, it can be helpful to request that one doctor serve as a medical coordinator. Because PSC may impact people differently, and PSCers often have other diseases, the treatment process may involve several physicians, often with different specialties.
Be an Advocate
The medical system today is complicated and can be difficult to navigate. Sometimes, the nature of PSC and its symptoms (e.g., fatigue, itching) may cause the caregiver to want to take a stronger role to help support and ensure the best care for their loved one.
Advocate but Don't Alienate
- The PSCer should be the person making decisions or agreeing to a proposed course of action, unless they request your assistance or defer to you.
- If you feel the need to speak up, it may be helpful to discuss the issue with your PSCer first, and find out if and how they would like you to proceed.
- Often, the PSCer’s outward appearance gives no indication of what is occurring on the inside: the scarring of the bile ducts, right upper quadrant pain, etc. In this way, the disease may be invisible to others, and its seriousness not understood. Caregivers in this situation can help by informing others about the disease. Providing brochures from the PSC Partners’ website may be helpful.
Keep Medical Records/Information Organized
- Maintain a contact list of healthcare providers: names, addresses, telephone numbers. Keep a record of medical appointments, including who was seen, date, and notes regarding what was covered. Many physicians will provide a summary record of each appointment, which can be kept in a binder.
- The contact list can also include pharmacies, insurance companies, and more.
- Many PSCers like to obtain copies of all pertinent documents and results (e.g., lab and imaging tests, doctor reports). These records can be taken with the PSCer to other medical appointments or when traveling.
- Ask hospitals and clinics whether they provide access to electronic health records through a patient portal or some other electronic medium.
- Encourage your PSCer to keep a record of symptoms and/or questions, which can be brought to a future appointment. The patient's list is a tool to make sure that all questions and concerns are covered during the visit.
- Ask your PSCer if it is OK for you to attend appointments with them, and if you can take notes.
- Ask your PSCer if you can ask questions in medical meetings.
- Hospital emergency rooms can be stressful for patients with PSC, as the PSCer does not feel well, and, sometimes, the doctor on duty may not be familiar with PSC. The caregiver can be helpful as a second set of ears, describing symptoms or past issues, if needed, and educating others about PSC, if necessary.
- If requested by the PSCer, a caregiver can complete an authorization form to speak on behalf of the PSCer with various entities such as medical providers, health insurance carriers, or pharmacies.
Steps to Managing Treatment
- Educate yourself about the medications the PSCer is taking.
- If needed, post a calendar for reference to help the PSCer stay on schedule.
- Watch for side effects to the medication(s). If side effects are noted, discuss with your PSCer how to report them to the doctor.
- To assist with medication dosing, especially when multiple medications are taken, consider preparing a one or two week supply using medication pill boxes/sets.
- Some pill boxes are equipped with timers that alert the PSCer and caregiver when it is time to take the medication.
- Remember that pillboxes can be a vital organizing tool when the PSCer is away from home.
- Maintain a list of key medical information for the PSCer. Examples of such information include:
- medications being taken (including vitamins, herbs, and supplements), with dosage and frequency
- other medical condition(s)
- past surgical interventions
Below is one example of how to organize this information onto an easy-to-carry card.
|PSCer’s Name||Date of birth||Address|
|Telephone numbers(s)||Blood type||Health insurance information|
|Hospital patient number||Allergies||Emergency contacts|
|Physicians telephone numbers||Medical conditions||Listing of current medications|
Legal and Travel Considerations
Consider what might occur in the future for the person with PSC, and what might be needed from you, should certain conditions warrant it. These may include:
Legal Documents: Some legal documents that people with PSC should consider having are:
- a power of attorney that authorizes someone to act as legal representative and make decisions on behalf of the PSCer
- an 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
- a statement about whether the PSCer wishes to be an organ donor
- a will that outlines what the PSCer wants done with his or her property in the event of death
- Review our page on legal issues and self-advocacy
Travel Considerations: 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 such terms as “stable” and “effective date” to make sure 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 excess 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, as well as the pertinent healthcare providers names and contact information.
- For people with significant fatigue, you contact the airline in advance, and request wheelchair assistance. Some airlines also provide front seating for those with disabilities.
- Affordable Care Act –This website provides information on the Affordable Care Act. Among the areas covered are Coverage, Costs, and Care. One important aspect of this statute for caregivers and people living with chronic illnesses is that individuals may no longer be denied health insurance coverage based on being diagnosed with a pre-existing condition.
- PSC Partners Seeking a Cure hosts an online support group for PSCers and caregivers to share social connection, education and experiences. Click here to request admittance to the PSC Partners Patient Facebook Support Group In addition, PSC Partners has pages on Twitter, YouTube, LinkedIn, and Instagram.
- PSC Partners Patient Registry – “The goal of the Patient Registry is to collect de-identified information on patients diagnosed with primary sclerosing cholangitis (PSC) in order to increase and accelerate research, enable clinical and drug trials, and find effective treatments for PSC.” Caregivers can encourage PSCers to become a part of the Patient Registry, and parents of young PSCers can register their child. Every PSCer is important in the Patient Registry.
- Social Security Disability – Provides information on benefits for people with disabilities. Among the areas discussed are Social Security Disability Insurance (“pays benefits to you and certain members of your family if you are “insured,” meaning that you worked long enough and paid Social Security taxes”) and Supplemental Security Income (“pays benefits based on financial need”).
- Caregiver Action Network – “The mission of the Caregiver Action Network (CAN) is to promote resourcefulness and respect for the more than 90 million family caregivers across the country.” CAN lists ten tips for family caregivers, and also has presentations on various topics of interest for caregivers (e.g., medication checklist, doctor’s office checklist).
- National Alliance for Caregiving – “Recognizing that family caregivers provide important societal and financial contributions toward maintaining the well-being of those they care for, the Alliance is dedicated to improving quality of life for families and their care recipients through research, innovation, and advocacy.” (Mission Statement)
Complete your profile and join PSC Partners Seeking a Cure in advancing PSC research towards a cure.