Caregivers

Being a Caregiver

Whether you just became a caregiver or have been one for some time, caring for someone with overt hepatic encephalopathy can be difficult. The physical and mental symptoms are not always easy to manage.

Navigating your loved one's diagnosis can be difficult to handle on your own. It can be hard to explain the physical and emotional burden you carry as a caregiver to someone who isn't familiar with the diagnosis or going through something similar, but know that you are not alone.

Lynette, a patient living with HE, and her son, Randy, share the importance of establishing a strong support system and ways they cope, together.

Signs of HE Progression

Using the symptom tracker can help you record your loved one's symptoms at home. You may notice "episodes" or symptoms becoming more frequent or more severe. These episodes can have an impact – both physically and mentally – so, ongoing monitoring is important.

physical symptoms

mild to moderate

Change in sleep patterns (like sleeping during the day and staying up at night)
Difficulty writing or doing other small hand movements
Breath that smells musty or sweet
Slurred speech

moderate to severe

Extreme sleepiness
Slowed or sluggish movement
Shaking of hands or arms (called “flapping”)
Jumbled, slurred speech that you can’t understand

MENTAL symptoms

mild to moderate

Mild confusion
Short attention span
Forgetfulness
Mood swings
Personality changes
Inappropriate behavior
Difficulty doing basic math

moderate to severe

Marked confusion
Severe anxiety or fearfulness
Confusion regarding time and place
Inability to perform mental tasks such as doing basic math

If you notice any changes in physical or mental abilities, talk to your loved one’s doctor. This may mean you need to change your loved one’s care plan.

MANAGEMENT OPTIONS

If an overt hepatic encephalopathy episode requires hospitalization, refer to this checklist to see suggested first steps and questions to ask following a HE diagnosis.

download checklist

If an overt hepatic encephalopathy episode requires hospitalization, refer to this checklist to see suggested first steps and questions to ask following a HE diagnosis.

download checklist

Helping Your Loved One

Proper treatment and lifestyle changes can help manage your loved one's overt hepatic encephalopathy. Here are some things to keep in mind:

Make sure your loved one is able to pick up their medicine; have it delivered or arrange to have it mailed so they don't miss taking their medicine as prescribed by their doctor.
Monitor to make sure your loved one is taking his or her medicine the way the doctor recommends.
- Side effects can sometimes make people want to stop taking their medicine; if this happens to your loved one, remind them of the importance of adhering to their medication regimen.
- If your loved one is experiencing side effects, call the doctor or nurse immediately, so you can help address these side effects.
Help your loved one follow diet changes or recommendations.
Ensure that your loved one has the transportation and support needed to get to doctor appointments.
Monitor your loved one to help avoid greater harm, including the risk of falling.
Talk about any concerns you have with a doctor, nurse or other members of your loved one's healthcare team.

Taking Care of You

Hepatic encephalopathy (HE) affects the individual and their loved ones. You may feel overwhelmed, stressed, sad or frustrated at times. These feelings are common. In fact, according to a recent survey of 169 individuals affected by HE:

of caregivers consider caring for someone with HE a full-time job

of caregivers find their own health has become less of a priority

Here are some tips for how to make sure your emotional needs are being met:

Take the time to rest and gain strength through sleep.
Talk to your boss or coworkers about shifting priorities.
Fuel your body with healthy nutrients, food and plenty of water.
Incorporate hobbies that bring you joy.

Start journaling. Writing down your thoughts and feelings can create a sense of relief and free up some emotional space.
Move your body. Make sure to stretch, take a walk or concentrate on your breath.
Speak with a financial advisor to answer any financial questions or provide guidance.
Consider joining a support group or speaking with a counselor or psychologist to communicate your feelings and emotional needs.

Taking Care of You

of caregivers consider caring for someone with HE a full-time job

of caregivers find their own health has become less of a priority

Here are some tips for how to make sure your emotional needs are being met:

Take the time to rest and gain strength through sleep.
Talk to your boss or coworkers about shifting priorities.
Fuel your body with healthy nutrients, food and plenty of water.
Incorporate hobbies that bring you joy.

Start journaling. Writing down your thoughts and feelings can create a sense of relief and free up some emotional space.
Move your body. Make sure to stretch, take a walk or concentrate on your breath.
Speak with a financial advisor to answer any financial questions or provide guidance.
Consider joining a support group or speaking with a counselor or psychologist to communicate your feelings and emotional needs.

Caregiver Resources

There is help available to you. Look for resources or support groups. Even if they are not specific to HE, they may help you. Here are a few to check out:

Caregiver.com A helpful source of information and resources curated for a community of caregivers to exchange ideas, share stories and connect with others.

Lotsa Helping Hands A platform to help schedule appointments, find meal or transportation services, communicate with your treatment team and support one another in the patient/caregiver community.

Family Caregiver Alliance (FCA) A network providing families and caregivers with resources to help navigate the challenges of caring for a loved one with a long-term health condition. The FCA provides online support groups, various education programs, and a platform to share your caregiver story.