What Your Caregiver Needs to Know

PSC Partners Seeking a Cure supports the very special people who become caregivers because they have a vital role in fighting PSC. Together with the patient, caregivers are on the front lines of managing the disease. You are in this together. Often families have several caregivers, and the ability to switch out responsibility is a great help in reducing stress for everyone.

Caregivers in the PSC Partners network contribute advice through the Yahoo! online support group. Click here to go to the group. Many attend our annual conference. They can offer you viewpoints and tips to help manage. Connecting with them can give you practical knowledge as well as a sense of relief-that there are others out there who really "get" what you're facing.

What do caregivers need to know? What do they need to do?

The Disease

Learn about PSC (as well as other autoimmune diseases that may be coexistent with PSC) and your patient's current health status. Primary sclerosing cholangitis is rare and many general practitioners have never managed a case. For that reason our organization recommends that a professional such as a gastroenterologist (a physician for specific gastro-intestinal tract diseases) or a hepatologist (liver specialist) take care of people with PSC.

You can research the disease along with the patient. Learn the medical terms involved. Become familiar with symptoms and any danger signs. Our website summarizes much basic information on PSC. Our brochures,
Living with PSC, Diagnosing PSC, PSC Medications, and
Pediatric PSC are available by clicking here.

Try to understand what might be over the horizon for your patient and anticipate what to do, should certain conditions warrant it.

Know the best ways to contact doctors and the medical team's staff if the need arises. If possible go with the patient to medical visits, and talk to the specialists. Write down your own questions along with the patient's. Note the answers-write them down, too-so you understand the treatment plan.

Sometimes liver disease patients are incapacitated and confused and your understanding can keep the situation straight when the patient isn't able to. Don't be embarrassed to call the medical team to clarify something. There are no stupid questions. Caregivers are a vital part of the entire team that will manage the situation. PSC Partners Seeking a Cure is respected by liver specialists and they tell us that our members are unusually knowledgeable about the disease.

The Medications

Learn the medications your patient is taking-take notes on that as well, maybe post a list for reference-because you may need to help the patient stay on schedule. Watch for the side effects of the meds and watch for any that need to be reported. Our brochure on PSC medications is available by clicking here.

Check to see if the meds need to be refilled so the patient won't run out of them.

If the patient has difficulty remembering when to take medications, look into special pill boxes with timers, beepers, and small pill compartments that can alert you about what to take and at what time of day. Be sure the patient has a way to take meds if away from home-possibly a pocket or purse pill case.

Advocacy

Become an advocate. If your patient is incapacitated physically or mentally you may have to take a strong role. The medical system is complicated these days and tough to navigate. Perhaps you'll get involved in scheduling appointments, tracking medical records, and insurance matters, getting the best care for your loved one, being sure they are safe. Click here for information on legal aspects of representing your patient.

And, because PSC is a rare disease, many caregivers and patients find they need to educate physicians about it. Or they move to a specialist who is up-to-date on the disease.

Every medical practice ought to have a Patient Bill of Rights available and they ought to follow it. Patients should be treated with dignity and respect.

Ask questions and double check the answers with reliable sources of information. Don't take no for an answer. You'll need to be determined to get the best care.

If your medical facility has a liver social worker, that person can sometimes help clarify situations and tell you about local resources.

Ask for help when you need it. Our online support group can assist, as well. Our members have been through this and can share their tips. We're together in the fight.

Patient Support

It's tough to see your loved one in this situation. Because PSC is not a common disease and may have numerous related diseases associated with it, patients can get extremely discouraged. They are understandably on a rollercoaster of emotions and may not be able to control them. They may lash out. On the other hand, some patients clam up, become depressed and quiet; they've run out of emotional gas.

They might not be able to reason something out and may not be themselves because of the way liver disease affects the brain. Hepatic encephalopathy, which some, but not all, PSCers experience, can create a fogginess in the brain that affects the way they think.

You may want to have an emergency bag, in the event the patient needs to go to the hospital or ER suddenly. Some caregivers suggest it should contain water, snacks, toothbrush, comfort items, possibly clothing.

Caregiver Support

Support yourself emotionally. Caregiving is a tough, stressful challenge. It is a courageous role. Some caregivers may go through stages of emotions similar to what a patient experiences, such as denial, anger, unrealistic expectations, grief, and eventually acceptance.

Find support through family, friends, your spiritual life, and through a sense of humor. Remember you are moving through this, it is an evolving situation and can change. You and your patient will live a "new normal" life, adapting and changing to manage the situation the best you can.

Take help when it is offered; let others support you with meals and chores. Educate them, too; spread the word about PSC. Take time out periodically. If the job is overwhelming, get help either from family or friends to join you in being a caregiver, or in hiring help for periods of time.

Check this link for hints on managing stress.

Check out some caregiver websites and local caregiver support groups to learn from others.

Selected Online Resources for Caregivers

Caregiver's Bill of Rights

• http://www.americanheart.org/presenter.jhtml?identifier=3039888

Family Caregiver Alliance

• http://www.caregiver.org/caregiver/jsp/home.jsp

National Family Caregivers Association

• http://www.nfcacares.org

National Alliance for Caregiving

• http://www.caregiving.org

Well Spouse Association

• http://www.wellspouse.org

Personal Stories

Stop, drop, and roll

So, the woman next to me leans over and says in a slow, southern drawl, "Now, I'm going to ask you a real personal question. What was the most important thing you learned with Scott's troubles?"

I've fielded this question before. People seem to think if you've spent the last year or so in purgatory, that you must have acquired some Yoda quality, survival secrets. Since we were at church, I couldn't really say, "Bile drains are not sexy." So, I looked her straight in the eye, and whispered, "The cruelest thing you can do to your husband . . . is to trip on his catheter."

Seriously though, if you're reading this, it's because you are a caregiver to someone with PSC, and you are truly looking for something that might help you understand and survive this challenge. Well, I don't have a lot of answers, but I can give you a general idea of what to expect as a caregiver, and provide some tips on weathering the potential purgatories this disease has to offer.

Take a deep breath, and know that the following statement is a very broad generalization:

The reality of this disease is that your loved one will probably, at his/her best, always have issues with fatigue. There will be good days, (even good years), and bad days, (hopefully, not bad years).

Your loved one can, at times, get very sick, very quickly, and there will be nothing you can do to prevent it. It is not guaranteed, but fairly likely, that he/she will progress into liver failure, and be relatively close to dying before receiving a liver transplant. As a caregiver, you will be stretched beyond your wildest dreams in your efforts to hold yourself, your loved one, and your family together.

That's quite sobering. But, you have to know that even though you don't have a lot of control over this disease, you can do something. You can anticipate some of your family's needs, and prepare for them.

And most importantly, you can live the absolute best life possible given your circumstances.

Things you can do to help your situation as a caregiver:

Take a written inventory of your needs. Depending on the stage of your loved one's disease, you should have some time to prepare for crisis to come. Will you need babysitters? Will you need transportation? Will you need financial help?

Take a written inventory of your support system. Family, friends, neighbors, religious resources-anyone and everyone who might be able to help should be considered as a viable resource.

Actively broaden your own emotional support base. Seek out old friends to call, and talk to when things get rough. Try to call them before things get rough. Reach out and establish a network of people who can help out with meals, yard work, or childcare. Attend your church, and seek additional support there.

Take care of yourself. Pursue your hobbies with vigor. Eat well, and exercise. Get enough sleep. Laugh. Pray. Consciously live as well as you possibly can, no matter what.

Adopt a personal crisis control plan before a crisis is at hand. Here is my crisis control plan. It applies to all sorts of situations where you feel immersed in the flames of Hell. I call it Stop, Drop, and Roll.

1. Stop fussing, fretting, and wasting your precious energies on things you cannot control.
2. Drop to your knees. Pray for help. Also, drop all responsibilities that are not absolutely vital to the survival of your family. This includes dropping your expectations of what needs to happen in order for you to be happy.
3. Roll your energies into only those things that will effectively help the situation. Feed the children. Keep the house clean enough that child protective services will not be knocking on your door. Simplify. Simplify. Simplify. Cheap pizza, or cold cereal for dinner is absolutely acceptable. Survive.
4. Keep a journal or blog of your journeys taking special note of the miracles and blessings in your life. It's one heck of a ride. Please, make sure you have lasting proof that you survived it.

Helping your loved one. Fatigue, depression, insomnia, itching, and general malaise are all common complaints of persons dealing with PSC. Try to be patient, loving and understanding, but communicate these symptoms to your doctor, as he might be able to prescribe medications to help alleviate his/her discomfort.

Expect to become your loved ones' advocate should he/she become incapacitated or hospitalized. Prepare yourself to become irritatingly proactive in his/her care, at times, demanding quality care and answers to your questions. Keep a paper record of medications, procedures, lab work, and decisions made at doctor visits. Take the file with you to each appointment, and emergency room visit.

Learn to recognize situations that require a trip to the emergency room. Cholangitis is an infection in clogged bile ducts and can be life threatening. Symptoms most often include fever, pain, sometimes jaundice, and clay colored stools. Many emergency rooms will try to treat this pain as indigestion. Be prepared with written documentation (the file) to explain PSC to medical personnel who have never heard of it before.

Never underestimate the power of touch.

Financial helps. If at all possible, do not acquire any new debt, and get out of debt as soon as possible.

If your loved one is the main breadwinner of your family, consider your options should he/she need to go on disability. It's extremely helpful to explore what benefits are available through insurance or your employers before a major crisis occurs.

• Check this resource to begin your exploration.

There are so many things, but truly, the absolute, most important thing you can do to survive this challenge is to stay close to your loved one, and to God. It's a rough road, but it's life. It's your life. Make it worth the fight.

God Bless.
Brenda F.

Your world has turned upside down

PSC came knocking on our family's door in 1995 when our son was diagnosed with a rare mysterious disease called primary sclerosing cholangitis.

I remember how frightened, disoriented and surreal I felt. Everything felt out of control. What was this disease? What were we going to do about it? How did you treat and manage it? We decided to get a second opinion.

The doctor confirmed the diagnosis, he told us that our son was diagnosed at the earliest possible stage and that there was hope for treatment and possibly a cure for PSC in the future. He gave us hope and hope goes a long way.

Coping

In the meantime, I went into my favorite coping mode, which is research. What I discovered in 1995 was bleak. In fact, there was little information available. While I hung on to hope, inside I felt so frightened and helpless. I was sure if I allowed myself to go with the feeling I would experience a massive anxiety attack and become incapacitated.

Instead I made myself breathe slowly until the feeling passed. I visualized this feeling like the Norwegian artist Edvard Munch's painting "The Scream" but did not share this image with anyone until 2005 when I attended the first PSC Partners Seeking a Cure conference in Denver. There I received non-judgmental validation from other caregivers as we shared our experiences and feelings and ways of coping. I came away knowing I was not alone.

When your 6-year-old, your teenager, or your spouse is told he or she may have a rare disease called PSC, you wait and worry and start trying to find out more about this disease.

You learn PSC causes the bile ducts to scar, narrow, and become blocked, eventually leading to liver damage. You learn it is a chronic progressive disease that follows no particular course, has an unpredictable timeline; there is no cure except possibly a liver transplant. You feel frightened, alone and powerless.

The diagnosis is confirmed: it is PSC! Your world has turned upside down. You don't know what to do. You worry about the future. You never planned for anything like this. Your life as a caregiver begins.

In addition to being a mother, and a caregiver, I'm a clinical social worker with three decades of experience helping others cope with chronic illness. I know when a loved one is diagnosed with PSC, it is a traumatic, life-changing event for both the patient and the family. Some of the feelings caregivers experience are: shock, disbelief, denial, fear, sadness, helplessness, guilt, anger, and grief. These emotions are normal and most caregivers will experience at least some of these feelings, with varying intensity, at one time or another.

The Demands of Caregiving

The demands on caregivers are particularly intense at time of diagnosis or when the PSCer is manifesting acute symptoms. On the other hand, if the PSCer is asymptomatic the demands are less. No matter the stage the PSCer is in or the length of time since diagnosis, all caregivers share worry about the health of their loved one and worry about the future.

Yet, as caregivers we are likely to neglect our own health and personal needs making us vulnerable to physical illnesses, depression and anxiety. Following are some suggestions to manage stress and avoid burnout.

Educate yourself: Information leads to empowerment and helps you feel more in control.

Get support. Seek out family, friends, clergy or therapist. Find a support group in your community or an on-line support groups (such as PSC at yahoo.com). Find a place where you can share your thoughts, fears and frustrations without fear of being judged.

Practice good communication skills. Share concerns and feelings by making "I" statements (I feel angry when I don't know what is going on). "You" statements feel aggressive (You make me feel angry.)

Journal. Keeping a journal is a way to privately write about your feelings.

Avoid burnout: Watch out for low energy, resentment of others, irritability, depression, anxiety, and a sense of being overwhelmed. If these feelings persist consider counseling. Explore the possibility of medication.

Private time. Carve out some private time to relax, go for a walk, read a book, sleep or do whatever you want to do.

Basics. Remember to eat, move, and breathe deeply.

Humor. Laughter is healing. Find ways to tickle your funny bone.

Reggie B.