For Caregivers

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:

  • Caretaker
    • 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.
    • Scheduling appointments (healthcare provider, lab work, benefit enrollment)
    • Coordinating or providing transportation to appointments, shopping, or visits to family and friends.
  • Navigator
    • 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.
  • Listener
    • Listening to your loved one and providing the necessary emotional support.
  • Advocate
    • 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.