One of the biggest roles of a caregiver is to become a student of the disease. The more knowledge about the disease that you can learn, the better prepared you will be to support your loved one. Often you will then become the teacher to your loved one when they experience new symptoms and complications.
Certainly your loved one’s medical team will be better able to communicate with you and their patient when you already have knowledge about the disease and its treatments. You will earn the medical team’s respect and probably have much better communication with them if you demonstrate the willingness to learn as you go through the process of the disease.
Liver disease is a progressive illness. Cirrhosis is also known as “end-stage liver disease” because it results from an underlying liver disease such as Hepatitis B/C, NASH or Alcoholic Liver Disease (ALD) or many other causal diseases. Even cirrhosis itself has several stages. A caregiver’s role changes as the disease progresses. If a transplant is in the future, the role changes more drastically as you progress to the point of surgery and then on to recovery after the operation.
Caregivers demonstrate commitment and love to everyone around them, including their patient. You may have to do additional shopping, cooking, cleaning or running errands for your loved one. You are the helping hand, the one who “fills in the gaps” between what your patient used to be able to do for him/herself and what they can do today, such as transportation and feeding.
Most of all, caregivers become the advocate for their patient for both their medical, legal and financial management. With liver disease there are often side effects that cause your patient to be confused or forgetful. A clear mind needs to be able to communicate with your patient’s doctors, lawyers and financial advisers. Caregivers make the proper arrangements between their care recipient and their professionals. Medication management also becomes an issue for liver patients causing the need for the caregiver to supervise proper administration of all prescribed medications.
Listening, talking to and providing emotional support are also primary responsibilities of a caregiver. You become your loved ones link to the “normal life” they had before the liver disease started to interrupt their “normality”. Many caregivers develop additional patience and interpersonal skills while performing their role.
Caregiving may seem like a one-way relationship on paper but in order to provide the best care, you must be able to maintain your own well-being. Your role as a caregiver is to take care of yourself first. This may seem selfish, but if you allow yourself to become more stressed or let your own health deteriorate unnecessarily, you won’t be able to provide your loved one with the care they need.