Simply put, a caregiver is anyone who is responsible for the daily needs of another person. Caregivers can be a friend, spouse, life partner, parent, sibling or other family member.
The role of a caregiver
Caregivers are responsible for the physical care and emotional support of someone who can no longer care for them self due to illness, injury or disability. This often includes providing support with financial and legal affairs as well.
If you are the caregiver for someone with HE, it’s likely you’re not completely new to this role as your loved one has probably been living with some form of chronic liver disease and cirrhosis for some time now. However, HE can bring a new set of challenges to caregiving because of the affects it can have on your loved one’s cognitive, or thinking abilities. Both caregivers and care recipients report that dealing with the mental symptoms of HE can often be the most challenging.
The roles you take on as a caregiver are usually dictated by the severity of your loved one’s condition and his or her capabilities and needs. Some of the important roles you may play include:
Taking care of household activities such as grocery shopping, preparing meals, cleaning, and managing finances.
Helping with activities of daily living such as bathing and dressing.
Managing medical care including maintaining medical records and administering or monitoring medication.
Watching for signs and symptoms of HE progression, side effects of medication, and generally monitoring your loved one’s health condition.
Coordinating or providing transportation to appointments, shopping, or visits to family and friends.
Learning the role that each member of the healthcare team plays in your loved one’s care and how to work within – or navigate – the healthcare system.
Communicator (and/or interpreter)
Communicating with healthcare and social service providers on behalf of your loved one.
Listening to your loved one and providing the necessary emotional support.
Promoting the interests of your loved one in all situations. This may include securing proper medical care, dealing with health insurance companies, and keeping up-to-date on current information and resources about HE.
Signs and symptoms to look for
HE encompasses a range of symptoms depending on the severity of the condition, so symptoms can vary widely from one person to another. Symptoms may begin slowly and gradually get worse, or they may occur suddenly and be severe from the start.
Mild to moderate symptoms of HE may include the following mental and physical changes:
Short attention span
Difficulty doing basic math
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
More severe symptoms of HE may include these mental and physical changes:
Severe anxiety or fearfulness
Disorientation regarding time and place
Inability to perform mental tasks such as doing basic math
Slowed or sluggish movement
Shaking of hands or arms (called “flapping”)
Jumbled, slurred speech that can’t be understood
In the most severe form of HE, people can become unresponsive, unconscious and enter a coma.
As your loved one’s condition changes so will the roles you take on as a caregiver. Sometimes people find they are called upon to perform duties for which they are unprepared. Certain tasks may feel overwhelming. But there is help available. Many organizations offer caregiver training and resources to help you learn to do things safely and efficiently. And while most of these resources are not specific to people with HE, you’ll still find many tips and tools of value.
Caregiver.com, website at www.caregiver.com A website and accompanying digital magazine that provides a variety of general information, tools, resources for all types of caregivers.
AARP, website at www.aarp.org Offers free webinars, caregiver discussion groups, an online health record, a care provider locater to find home health care and other services near you, and many comprehensive educational resources. Their toll-free Caregivers Support Line is 1-877-333-5885.
American Red Cross, website at www.redcross.org Offers a nine-module training program for caregivers or you can contact your local Red Cross chapter for information about community-based programs.
Family Caregiver Alliance, website at www.caregiver.org The FCA National Center on Caregiving provides Fact Sheets, discussion groups, telephone conferences and the Family Care Navigator, which provides state-by-state information on caregiving resources.
National Family Caregiver Association, website at www.caregiveraction.org/ Provides education, peer support and online resources.
In addition to investigating these organizations, speak to your loved one’s healthcare providers if you need help. Medicare (and in some states Medicaid) will pay for certain types of caregiver education if it’s provided as part of a patient’s medically necessary in-home visit.
Stories from patients and caregivers
An episode of HE may be triggered by any of the following things:
Dehydration: This happens when you don’t get enough water or other fluids.
Bleeding from your intestines, stomach or esophagus (the tube that connects your mouth to your stomach). This is referred to as gastrointestinal, or GI, bleeding.
Medications that affect your nervous system, such as sleeping pills, antidepressants or tranquilizers.
An alcohol binge
Having a portosystemic shunt: This is a tube that’s placed in your liver, sometimes called a TIPS, or a surgical procedure to reroute blood flow and relieve high blood pressure in the veins in and around your liver, a condition called portal hypertension.