Being a Caregiver
Whether you just became a caregiver or have been one for some time, caring for someone with overt hepatic encephalopathy (HE) 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 challenges you face 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.
- 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
- Extreme sleepiness
- Slowed or sluggish movement
- Shaking of hands or arms (called “flapping”)
- Jumbled, slurred speech that you can’t understand
- Mild confusion
- Short attention span
- Forgetfulness
- Mood swings
- Personality changes
- Inappropriate behavior
- Difficulty doing basic math
- 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 healthcare provider (HCP). This may signal a need to change your loved one’s care plan.
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 checklistHelping 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 healthcare provider.- Monitor to make sure your loved one is taking his or her medicine the way the healthcare provider 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 their healthcare provider immediately, so you can help address these side effects.
- Help your loved one follow healthy lifestyle changes and recommendations from their HCP.
- Ensure that your loved one has the transportation and support needed to get to their appointments with their HCPs.
- 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 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:
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Take the time to rest and gain strength through sleep.
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Talk to your boss or coworkers about shifting priorities.
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Fuel your body with healthy nutrients, food and plenty of water.
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Incorporate hobbies that bring you joy.
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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.
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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
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.
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.