Family, friends and carers

Everyday life

Many people can live well with a liver condition for years.

Often a family member or carer is the person looking after things day to day.  Dealing with everything from medications and hospital appointments to special diets and household finances.

This page has more information about the practical issues you might face, and some things it might be helpful to think about for the future.

The information on this page is for:

  • Family, friends, and carers of an adult with liver disease

You can find information about caring for a child with liver disease here.

On this page:

Food

 

There are different ways that a liver condition could affect what your loved one needs to eat. This could also change over time as their condition changes. So it is important to ask for advice from your medical team.

For some people, the best thing is just to try and eat a healthy balanced diet. This will support their liver to get better.

If your loved one has a lot of fat in their liver, they may be advised to eat very carefully or try to lose weight. You might hear this liver condition called MASLD or NAFLD.

If your loved one has cirrhosis, they might need to get more protein and energy (calories) from their food. You can read about dietary advice for people with cirrhosis here.

If your loved one is very unwell, they may struggle to eat enough. This can lead to malnutrition, muscle wasting and having even less energy. You can find out more about coping with eating difficulties here.

If your loved one needs a special diet, it is important to get good advice. There is a lot of information online, but it is not all correct or might not be right for you. The best person to talk to is a registered NHS dietician. Some liver units have specialist liver health dieticians. Ask your medical team what is available in your area and if you can be referred.

Find out more about eating, drinking and staying active here

Health care professionals sometimes use a lot of complicated words. You can look these up in our useful words glossary here.

Work

Your loved one

If your loved one works then it is a good idea to look into their rights at work. Including things like sick pay and taking time off for appointments and treatment.

More information about working with a liver condition

You

If you are an employee, then you are entitled to time off work for emergencies. For example if your normal care arrangements fall through at short notice. But this might have to be taken as annual leave or unpaid leave.

Some companies offer family and carer leave. This is a set number of days per year where you can take paid leave for caring. Check with your employee handbook, manager, or HR department to see if you are entitled to this.

If you have worked somewhere for more than 26 weeks, you have the right to request flexible working. Your employer does not have to agree to this. But they must deal with your request in a “reasonable manner”. For example, by having a meeting with you to discuss the request and having an appeals process.

You can find out more about flexible working here

The rules are slightly different in Northern Ireland. Find out more here

Money

Benefits

You and your loved one might be entitled to some benefits if they are seriously ill or disabled. Unfortunately the benefits system is very complicated and can be slow. It is worth looking into benefits and making an application as soon as you can. Even if you can cope at the moment.

You can find out more about benefits here

Insurance

Being diagnosed with a serious medical condition can affect insurance. It is important to check if you need to tell your insurance company about the diagnosis. Some types of insurance, including travel insurance, will not pay out if they do not know about a medical condition. Even if the condition is nothing to do with the reason for the claim.

Find out more about insurance here

Keeping money safe

Some people with a serious liver condition can become confused or have issues with their memory. If this happens, they are more at risk of financial scams.

It is a good idea to talk to your loved one about this possibility before it becomes a problem.

They might want to set up a financial lasting power of attorney so that you can look after major financial decisions if they are not able to.

You could also think about pre-paid cards. These are an alternative to credit and debit cards. You can transfer a fixed amount of money to the card each week or month. Your loved one can keep the freedom of buying things for themselves. But they cannot spend more than is on the card. So they cannot run up a big bill or be scammed out of a large amount of money.

Shop around for the best deal. Some pre-paid cards charge a fee, or need to be managed on a smart phone app. You can find out more on the money saving expert website here.

You could also talk to your loved one’s bank about setting up a withdrawal limit to stop them taking out a lot of cash. Or lowering the credit limit on credit cards.

Thinking about future decisions – lasting power of attorney

 

One complication of serious liver disease is a condition called hepatic encephalopathy. Not everyone with a liver condition will develop this but it is worth thinking about it in advance.

Hepatic encephalopathy affects the person’s brain. It causes problems with memory and confusion. And in some cases people’s behaviour or judgement is affected. At first the changes might only be very slight, and they can come and go. But over time this can mean that your loved one is not able to make important decisions for themselves.

This can be a difficult thing to think about. But it is a good idea to have a conversation about it before it becomes a problem. You can talk about your loved ones wishes and how you will both cope if this happens.

A good option is to set up a lasting power of attorney (LPA). This allows your loved one to decide on an “attorney”. The attorney is usually a partner, adult child, or close friend. The attorney does not need to have any legal qualifications, they should just be someone who will act in the person’s best interests.  The attorney will make decisions for your loved one if they can no longer make them for themselves.

There are two types of LPA. Your loved one can make one or both:

 

An LPA for health and care allows the attorney to make decisions about medical treatment and care.

This type of LPA only comes into force once your loved one is considered to lack mental capacity.

If your loved one does not have an LPA then doctors should still consult you on their care. But it will be the healthcare professionals who have the final say.

 

An LPA for property and affairs allows the attorney to make decisions about property and finances.

Your loved one can decide if they want to give their attorney this power as soon as the LPA is made, or only if they lose mental capacity.

 

You can find out more about setting up an LPA on the government website here.

You may be able to do this yourself online or by downloading a form, but it can be complicated.

There are solicitors who offer a service for setting up LPAs. It can be expensive so get quotes from several different places.

The Alzheimers Society also offers help with filling in LPA forms. You can find out more on their website here. Or by calling their helpline on 0333 150 3456

Serious complications of liver conditions

There are a number of problems that can develop if your loved one has cirrhosis and advanced liver disease. It’s a good idea to know about any symptoms to look out for and what to do. We have online information, factsheets and detailed booklets about complications including:

  • Ascites 
  • Hepatic encephalopathy (HE) i
  • Varices 

Comlications of cirrhosis

Support

How Liver UK can help

A diagnosis of liver disease can be worrying, and you may have a lot of questions.

We're here for you and for your family and friends. Whether you have questions or just need someone to listen, we can help.

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This content was last reviewed: January 2024

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We would like to thank all the families, friends and carers who helped with creating and reviewing this page.

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