Caring for a loved one with nonalcoholic steatohepatitis (NASH), a serious liver condition, comes with many challenges and responsibilities. Whether it is providing support through the stages of the disease or helping with recovery after a liver transplant, being a caregiver can be overwhelming. It requires knowledge, patience, and understanding.1
NASH can lead to complications that may result in a liver transplant or palliative care. These complications are serious conditions that require a lot of support and care. They can include:1-3
- Severe, permanent scarring of the liver (cirrhosis)
- End-stage liver disease (liver failure)
- Liver cancer
What NASH caregivers provide
Being a caregiver to someone with NASH can change your life in many ways, including:1-5
- Your daily routine
- Your work and finances
- Your physical and mental health
- Your emotional well-being
- Your connection with one another
As a caregiver, there are a lot of things you might be responsible for, such as:1,3-5
- Coordinating and scheduling medical care
- Keeping track of medicines and their side effects
- Transportation to and from appointments
- Taking care of everyday tasks like household chores, shopping, meal prep, paying bills, etc.
- Helping with bathing and dressing
- Providing physical and emotional support
- Being your loved one’s advocate or spokesperson
Challenges of caring for someone with end-stage liver disease
End-stage liver disease is the most advanced form of NASH. It often results in frequent trips to the hospital, disability, and even death. For caregivers, watching a loved one struggle with symptoms like fluid build-up and mental confusion can be emotionally taxing. Managing medicines, doctor’s appointments, and daily care can become a full-time commitment.1,4
Caregivers of people with end-stage liver disease need to educate themselves about the disease, its progression, and treatment options. Learn as much as you can, and try to get your loved one involved too. Building a support network of healthcare professionals, family, and friends can provide much-needed assistance and emotional support.1,4
Caring for someone after a liver transplant
For those with advanced NASH or end-stage liver failure, a liver transplant may be the only viable treatment option. This operation requires a lot of healing time, medicine management, and postoperative care. People who get a liver transplant need around-the-clock care for about 6 weeks after their surgery.3
As a caregiver, supporting your loved one through the transplant process is crucial. This may involve:3
- Coordinating medical appointments, both before and after surgery
- Assisting with medicines
- Helping with daily tasks like bathing, dressing, going to the bathroom, and preparing meals
After the transplant, caregivers play a vital role in ensuring their loved one follows post-transplant care guidelines. Tasks may include:3
- Monitoring for signs of organ rejection – While rare immediately after transplant, organ rejection is a possibility. Monitor your loved one closely for any signs of rejection.
- Managing anti-rejection medicines – These medicines help prevent the body from rejecting the new liver. They have to be taken for the rest of a person’s life after a transplant.
- Promoting a healthy lifestyle – Help your loved one eat healthy meals and get regular physical activity to maintain the new liver’s function.
Caring for a child with NASH
Fatty liver and NASH are not limited to just adults. They also can affect children, especially those who are overweight or have obesity. Parents and caregivers must work closely with care teams to develop a treatment plan that involves:5
- Changes to diet
- Regular exercise
- Close monitoring of symptoms
- Managing doctor’s appointments
- Filling prescriptions
Creating a supportive environment at home that promotes healthy habits can make a huge difference in a child’s long-term health outcomes. Ultimately, it can prevent liver disease from getting worse.5
Coping with caregiving and preventing burnout
Caring for someone with NASH can be physically and emotionally draining. Unfortunately, many NASH caregivers set their personal needs aside in order to care for their loved ones. This can lead to burnout.1,3
Caregivers need to prioritize their own health and get support when needed. Make sure to do the following:1,3
- Take breaks.
- Stay organized.
- Consider palliative care.
- Practice self-care.
Being a caregiver for someone with NASH can mark a profound shift in your life. It can affect your emotional and physical health as well as your social and financial well-being. While challenging, it also offers opportunities for personal growth and deeper connections with the loved one receiving care.1
The ins and outs of caregiving may not always come naturally. But these are learnable skills. Just be sure to get help when you need it to maintain your well-being. This will enable you to continue to provide care.1,3