Caring for someone who has lymphoma

If you’re looking after someone who has lymphoma – whether this is a partner, family member or friend – and you’re not being paid for it, you’re taking on the role of a carer.

This information gives ideas on offering practical and emotional support to the person who has lymphoma, as well as tips to help you take care of yourself.

On this page

Am I a carer?

Why is it important to recognise that I’m a carer?

Carer’s assessment

What day-to-day practical support can I offer the person I’m caring for?

Being involved in medical appointments

Helping to keep checks on the person’s health

Helping to get information about lymphoma

Offering emotional support

Your emotions as a carer

Taking a break from your caring role

Your relationship with the person you care for

Living with uncertainty

Getting support with work and finances as a carer

Taking care of your physical and emotional wellbeing

Am I a carer?

Although ‘carer’ can mean paid carers (for example, through private companies), we use it to describe people who care for a family member or friend unpaid. They might be doing this full-time, or balancing it with paid employment.

If you’re looking after someone because of their lymphoma diagnosis without being paid to do so, you are considered to be a carer.

The type of care you offer depends on factors like your relationship with the person, their needs, and what you can realistically do within the limitations of your time, energy and other commitments. It can be practical, emotional or, very often, a mixture of both.

Lots of people who take on this role don’t see themselves as a carer. According to the NHS, it takes an average of two years for someone to acknowledge their role as a carer. However, it can be important in terms of helping you to access various sources of practical and emotional support.

According to Census data, 1.7 million people in the UK are providing 50 or more hours of care per week.
Carers UK, 2025

Why is it important to recognise that I’m a carer?

Much of the support that might be available to you as a carer depends on having your needs considered through a carer's assessment.

In addition, acknowledging your role as a carer can help to make sense of your emotions, making them less overwhelming. For example, there might be times when you feel worn out, anxious or low. This is natural at times when you have a lot to deal with and you’re tired. Try not to ignore any signs of strain and pressure, and seek support before you reach a stage of what many carers refer to as ‘burnout’. Talking to others and sharing the load emotionally can be a very helpful starting point.

Carer’s assessment

A carer’s assessment can help you to access practical, financial, social and emotional support.

The carer’s assessment is not a test of your abilities, but a conversation about what support you might need. You can request an assessment for free from your local council (in England, Wales and Scotland), or from your local health and social care trust (in Northern Ireland).
Jane Butler, Carers UK

During the assessment, you talk through your needs with someone who is trained to carry out the assessment. They help you to think about how caring affects your day-to-day life.

They signpost you to any carers’ support groups in your area and tell you about sources of support you are eligible for. This might include:

financial support to go towards the costs that can come with caring for someone, for example transport costs to take the person to medical appointments
practical help at home, such as with household chores
having someone take on your caring responsibilities for a little while, to help improve your health and wellbeing – for example, by going for a walk or to an exercise class
advice on how to physically lift up the person you care for in ways that are safe for you both.

The NHS website has information about a carer’s assessment, including about how to get one and how it might be helpful. You can also find out about the carer’s assessment and why it’s important to talk to your GP on the Carers UK website.

What day-to-day practical support can I offer the person I’m caring for?

Much of what you offer will depend on the person’s needs and what you can give. Try to find out from them what help they would like. Be mindful that there might be specific tasks they would ideally like to do for themselves.

You could consider offering to help with day-to-day tasks such as:

shopping
preparing meals
keeping their home clean
childcare
helping to care for pets
providing transport to medical appointments or other things they might want to do.

Helping the person on a practical level could also help them mentally. For instance, by driving them to an art class, you can also give the person a break from thoughts about their lymphoma and enable them to do an activity they enjoy. This can bring a sense of achievement for the person, boost their confidence, and offer a chance for social interaction.

Devices to help with the day-to-day practicalities

You could suggest to the person you care for that they think about any devices and technology that might make life easier – particularly if there are things that they need or want to do for themselves. For some people this is important in helping to keep a sense of independence.

There are various tools that could help with day-to-day tasks, such as electric tin openers and jar openers. These can help if the person is experiencing treatment side effects, such as cancer-related fatigue or nerve damage (peripheral neuropathy).

Carer’s UK has information about smart-tech and handy devices for the home. Examples include voice-activated systems to help with medication management and to control your home appliances such as lights and heating.

Living made easy (part of the charity Shaw Trust) also has ideas of gadgets that could help with tasks at home.

Being involved in medical appointments

You could see if and how the person with lymphoma might like you to be involved in their medical appointments.

Before appointments, you could help them to think about what information they’d like to get from their healthcare professionals. You could help them to list any questions they’d like to ask – we have some suggestions of questions to ask your medical team about lymphoma that could be a useful starting point.

Some possible ways you could be involved in medical appointments are to:

take, or simply be with the person on journeys to and from their appointments
go into appointments with them
note down the person’s questions as a memory prompt to take with them to appointments
make phone calls or online appointment bookings on their behalf
help with scheduling, by noting appointments on a calendar or in their diary
organise reminders or set up alerts about upcoming appointments.

Tips for going into medical appointments with the person

If the person would like you to go with them into a medical appointment:

Check with them in advance if they would like you to be actively involved in the conversation – if so, find out which of you they would like to lead it.
You could offer to note down the key points of the discussion, so that they have these before their hospital summary letter is sent at a later date.
Encourage them to ask for an explanation of anything they don’t understand – healthcare professionals are there to help and are used to repeating things, slowing down or explaining them in a different way.

We have more tips about getting the best from your medical appointments.

You and the person with lymphoma might also find our online glossary helpful, which briefly explains what doctors mean by words you might hear them use. Our Helpline Team is also available to talk through the information you’re given, as well as to offer emotional support.

Tips to help look after yourself when supporting someone with their medical appointments

Supporting someone with their medical appointments can bring mixed feelings. For example, a sense of reward and closeness with the person. Yet, it can also be time-consuming, tiring and stressful.

Below are some ideas to help you look after yourself:

Prepare yourself mentally before the appointment. You could think it through in private, or you might like to talk to a member of our Helpline Services Team. If you are taking the person to the appointment, give yourself time to plan logistics, such as how you will get there and what time you need to leave.
Give yourself time to understand any information given during the appointment. There can be a lot to take in, and you might need time to go back over what you’ve been told.
Do something relaxing and enjoyable after the appointment. For example, listen to relaxing music, have a bath, meet a friend, go for a walk, read a book, or have lunch with the person you care for.

Helping to keep checks on the person’s health

Together, you and the person you care for can keep a check on their health. Their medical team can give advice about this. They can tell you what to do if you notice anything that could be a possible sign of infection or lymphoma symptom. You can also encourage the person you care for to seek support from their medical team with any treatment side effects they might be experiencing.

Signs of infection

Lymphoma and its treatments can increase the risk of getting infections. It can also make it harder to get rid of them without antibiotics.

You can help the person you care for by looking out for signs of infection. Keep a thermometer so that you, or the person with lymphoma, can check their temperature. If the reading is above 38°C or 100.4°F or they have any other possible symptoms or signs of infection, contact their GP or a member of their medical team straightaway. This is because infections can become serious for people who have lymphoma, and you might need urgent medical attention.

You can find out more in our separate information about infection: risk and prevention.

Possible lymphoma symptoms

Be aware of the common lymphoma symptoms. If you notice a symptom that the person seems to be unaware of, you could gently point it out and suggest that they contact a member of their medical team for advice – the person’s keyworker (often their clinical nurse specialist) is usually a good point of contact.

Helping to get information about lymphoma

Some people prefer to know lots of detail about their lymphoma. Others feel more comfortable finding out only a little, or a bit at a time. If the person you care for feels this way, encourage them to let their medical team know this. Reassure them that their health professionals should respect their wishes.

If you feel comfortable doing so, you could offer to do some research about their lymphoma and its treatment, sharing just the ‘top level’ information with them.

We offer lots of information about lymphoma, including about possible treatments, coping with side effects, and other aspects of day-to-day living.

Our Helpline Team can provide general information about any aspect of lymphoma. They can also offer emotional support, both to you and the person you care for.

The medical professionals looking after the person with lymphoma can give information that is specific to the person’s individual situation. Their keyworker can be a good person to approach with questions or concerns. With their consent, you could also talk to the person’s keyworker to help get any information they would like.

Finding trustworthy information online

Not all health and social care information (particularly online) is trustworthy. It might also not be relevant to the UK. In addition, Artificial Intelligence (AI) summaries are not always drawn from reputable sources.

For people living in England and Wales, the NHS website is a good place to find health information. For those living in Scotland, NHS inform is a good place to find health information. For people in Northern Ireland, there is trustworthy information on the NIdirect government services website.

Other tips include looking at:

whether the information seems to be impartial and balanced, for example, is it trying to sell you something?
when it was published, for an idea of how up -to-date it is
whether a trusted organisation or relevant health professional has been involved in producing it
the references listed, if there is one, to tell you where the information was taken from.

Information that has the Patient Information Forum (PIF) TICK

A quick and easy way of finding out whether information is high quality is to check whether it has the Patient Information Forum (PIF) TICK, a UK-wide quality mark that indicates that the information is trustworthy.

Offering emotional support

You can offer emotional support in various ways. We offer some suggestions below.

Express your warmth and care

Ask the person questions and encourage them to tell you more if they would like to. Show that you’re listening through non-verbal communication such as eye-contact, and nodding. Gentle touch can help to express care, for example gently placing a hand on the person’s arm or shoulder.

You can also show active listening by checking that you have understood the person’s meaning correctly. For example, by paraphrasing or repeating back parts of what they’ve said.

If you do not live with the person, you could send a text message, email or card to show that you’re thinking of the person. Talking on the phone or by videocall can also allow you to connect, regardless of how far away you are from each other.

Allow opportunities to talk

Sometimes, it can feel uncomfortable to ask someone directly about their feelings. If this is the case, you could ask about something practical – like whether the person has any medical appointments coming up, and how the last one went. The conversation might then lead onto them telling you more about how they’re feeling, if they want to. Starting a conversation might feel less daunting in a relaxed setting, such as while walking together or on a car journey, rather than sitting face-to-face.

It can be hard to know if someone doesn’t want to talk or whether they just don’t know how to begin. They might be unsure whether you’ll be ready to hear what they have to say. Go at a pace that feels right – not everything needs to be covered in one conversation. By showing your support, it can help to show the person that they can talk to you on another day if they’d like to.

Listen and pay attention to what the person says

Pay attention to what the person says without planning what to say next. There might be times when the person just wants to ‘offload’ their feelings, without you trying to do something about it.

Although it can feel more comfortable to fill any gaps in the conversation, simply staying with the person’s emotions can be deeply beneficial. Keep in mind that feelings are natural, including those that are painful and challenging. Tears are a healthy expression of human emotion and can help to release tension. Remember that the cause of the person’s upset is the situation, not you.

What if the person doesn’t seem to want to talk

Not everyone wants to talk about how they feel. When you ask how the person is, they might say they’re 'OK' or 'fine'. While this might be true, perhaps they don’t want to talk just at the moment. You could ask again at another time, and give them opportunities to talk if they would like to. However, there might just be differences in what you’d like to know and what the person would like to tell you.

Some people find it easier to talk to someone outside of their family and friendship groups. We have a range of Support Services, which are open to both you and the person you care for, including our Helpline, Online Support Meetings and Buddy Service.

Receiving a lymphoma diagnosis can feel overwhelming, and talking about it isn’t always easy; for the person diagnosed or for those supporting them. Our helpline offers a safe, confidential space to talk things through, reflect and feel heard, as well as explore other options for support.
Nicola, Lymphoma Action Helpline Team

Differences in what you’d like to know and what the person tells you

There might be a gap between what you’d like to know about the health of the person you care for and what they’re willing to tell you. Some people describe feeling shut out or excluded. Without information to let you know otherwise, you might start to think about the worst possible outcome, which can heighten stress and anxiety.

Consider possible reasons behind the person not involving you more. Limiting how much they tell you could be a way of trying not to burden or upset you. For some people, it might be an attempt to keep a sense of independence and control.

If it feels appropriate to do so, it could help to let the person know how you feel. For example: ‘If you would be comfortable doing so, maybe you’d let me know about upcoming appointments? I could come with you if you’d like me to.’ We have more tips on communicating with the people around you in our separate information.

Show that you’re willing and ready to talk if and when the person would like to. Hard as it can be, there might still be a difference between your wishes and what they’re comfortable with sharing.

Your emotions as a carer

Many carers experience mixed feelings about supporting someone who has lymphoma. As well as managing your own day-to-day life and feelings, you’re supporting someone else with theirs.

Some people feel a sense of reward in helping to meet the needs of someone close to them. They might come to feel emotionally closer and more connected to the person.

Whilst at home, mum and I did lots of things together, from making clay models to playing with remote control cars around our living room. We’d talk, laugh and cry at times.
Adam, carer to his mum

Regardless of how much you love and care about the person, there are likely to be times when you feel physically and mentally exhausted. The intensity of the situation, particularly over a time, can lead to heightened anxiety and stress.

Adjusting to change

There can be a lot of adjusting to do as you adapt to changes in practical arrangements and dealing with the emotional impact of caring. You might also need to change your schedule or plans in the short to medium term.

It can be hard to get used to a different way of life. It can also be a reminder of the reason for needing to make such changes. In addition to the sadness and concern you might feel in relation to the person’s health, some people feel loss or disappointment that life hasn’t turned out as they had hoped or expected.

Carer burnout

Burnout describes emotional, physical and mental exhaustion that can happen because of heightened and ongoing stress. It can happen in response to feeling overwhelmed and worn out. If you have other challenges in your life and already struggle with heightened stress, you might be at a higher risk of developing carer burnout.

At first, burnout can be mistaken for general tiredness or stress. Over time, you might feel as though you have little energy to give to the person you care for.

This can bring difficult emotions such as sadness, resentment, and heightened stress. Such feelings can in turn lead to guilt, which can be extremely painful.

Possible physical signs of burnout include:

difficulty sleeping or a change in sleeping patterns
feeling tired a lot of the time
frequent headaches
a change in appetite
frequent illness
body aches and pains.

Possible emotional signs of burnout include:

irritability, anger, or resentment
a sense of helplessness and loss of motivation
feeling isolated, and withdrawing from friends or your usual hobbies
anxiety and low mood.

Possible behavioural signs of burnout include:

feeling impatient
difficulty concentrating and remembering things
putting things off (procrastinating) or taking longer to complete tasks
using food, drugs or alcohol to try to manage your feelings.

How can I avoid a carer burnout?

To avoid carer burnout, take care of your emotional wellbeing and give yourself breaks, both mentally and physically. Helpguide.org has more information about caregiver stress and burnout, and about burnout prevention and treatment.

Try to recognise how you feel, and consider how you can help yourself, including the support that might be available to you as a carer.

Caring tasks and pressures can build up gradually and it’s very common for carers to reach a state of burnout. Try to recognise the warning signs - such as increasing fatigue and lack of sleep - and seek help. Try to put measures in place, such as more regular breaks and mindfulness support, to build your resilience. There are many avenues of support available.
Jane Butler, Carers UK

Carers UK has information about coping with guilt, resentment and other difficult emotions.

Taking a break from your caring role (respite)

Rest is an essential part of looking after yourself. There are different ways to take a break from your caring role. One option might be taking a short break (respite) with the support of an organisation that can help to arrange this. This could be anything from a few hours to a couple of weeks’ break from your caring responsibilities.

Respite can involve:

getting help with your household chores
having someone to be with the person who has lymphoma while you take some time out
taking part in a hobby or leisure activity away from your caring duties
taking a holiday, with or without the person you care for
a short stay in a care home for the person with lymphoma.

Respite might also take the form of replacement care. This is a one-off or short-term type of support, which aims to give you a break. In some cases it might be ongoing. This type of support might include having support care assistants come to the home of the person with lymphoma to look after them.

You might also be interested in information from:

Carers UK about finding time to relax
Carers Trust about getting a break (respite for carers), which includes a list of organisations you could contact about holidays for unpaid carers.

Your relationship with the person you care for

As you both adjust to the uncertainty and challenges of living with lymphoma, there might be changes within your relationship.

For example:

your approach to day-to-day practicalities might differ – for example, who does most of the driving or how you divide household tasks between you
there might be a switch in roles – such as which of you tends to be ‘the problem solver’ or ‘the one to cheer the other up’
if the person you care for is your parent (or a parent figure), you might experience a sense of role-reversal in taking care of their needs.

Being a carer is life-changing. My wife Eve was diagnosed with lymphoma. We are very different; to me a glass is half full but to Eve, it’s half empty. Having some effective treatment, she began to feel better and some of her negativity disappeared. It was about this time that Lymphoma Action was recommended to us. Through one of their support groups, we met lots of other people who were in the same boat as Eve, and moreover had been, for many years. She suddenly realised that she was not alone in this. This made my job as her carer so much easier.
Cliff, carer to his wife

There will very likely be times when your relationship with the person you care for feels strained. Some people describe a need to be strong, upbeat and positive for the person with lymphoma – this can be very draining, emotionally. Very often, being open about the challenges and working together to address them can be far more beneficial.

You might also find that there are times when you seem to take on the emotions of the person you care for. If their energy levels are lowered by the physical or emotional effects of lymphoma and its treatment, this might lower their general mood and patience. They might seem abrupt and ‘snappy’. This can affect your own mood and patience. Carers UK has tips on how to deal with this and information about your relationship as a carer and some common situations you might face.

Some people describe positive changes that come about as a result of their caregiving role. For example, you might feel a sense of reward and grow closer to the person you care for. Some people say they feel a deeper meaning in life. Such positive changes are sometimes called ‘post-traumatic growth’.

Living with uncertainty

Uncertainty can be a significant part of caring for someone with lymphoma. We outline some of the challenges people might experience, and give some tips coping with uncertainty.

Uncertainty about the outcome for the person with lymphoma

For a lot of people, lymphoma is effectively managed. Many people also go into remission (disappearance or significant shrinkage of lymphoma).

Nonetheless, it can be very difficult not knowing for certain what the outcome will be for the person you care for. The doctors treating them might be able to give an idea based on factors including the type of lymphoma and how fast it is growing. Even with all this information, however, nobody can say for certain how someone will respond to treatment, what side effects they will get or how long they will live.

Living with uncertainty can be difficult to manage. You might also be supporting the person you care for with their feelings in relation to uncertainty.

Uncertainty about finances

Cancer can put a strain on finances, for example, travel costs to hospital, or if you reduce your working hours or stop working to care for the person. Their ability to work might also have become limited.

You might feel uncertain about your current and future financial stability, which can cause doubt and heightened anxiety.

Many people assume that financial benefits are not for them, but you might find that you or the person you care for qualify for some extra support.
Jane Butler, Carers UK

Find out more about getting support with work and finances as a carer.

Uncertainty about whether you are doing enough for the person

Some carers feel uncertainty and self-doubt, questioning whether they’re doing enough to help. These feelings are common, but it’s important for everyone who’s caring to have boundaries. There are limits to everyone’s capacity levels, and nobody can be expected to do everything.

Consider how you can best help the person you care for. Recognise, too, that it’s important to look after your own wellbeing.

Coping with uncertainty

It can be hard to adapt to an uncertain situation, to manage anxiety and to feel hopeful. Some people describe a sense of having been ‘shaken’ when someone they love becomes unwell. It’s common to wish for more control over things that you’re unable to control. However, working towards accepting it can help you to build an ability to live with uncertainty.

Some things you might find helpful are to:

Think about what you can control. For example, following a healthy lifestyle and taking care of your mental wellbeing. You might also find it helps to find out a bit about lymphoma, though take care not to overwhelm yourself with too much information.
Make plans and try to keep to them. For example, you could plan a day out for you and the person you care for, for once they finish treatment. Just be sure to consider their energy levels and any safety precautions their medical team advises them to take.
Set realistic goals, to give you both something to aim for.
Use meditation or relaxation techniques, such as mindfulness. This encourages you to slow down and live in the present moment.
Get emotional support, whether this is through talking with someone close to you, getting in touch with our Helpline Services, or seeking support through a trained professional, such as a counsellor.

Many carers experience a crisis in confidence about future plans when their caring responsibilities end too. There are many transferable skills you will have developed while caring and it can help to reflect on these. If you feel like you’ve been cut off socially, finding a fun hobby could help you gradually immerse yourself back into supportive, social communities again – such as a sports or book club.
Jane Butler, Carers UK

Getting support with work and finances as a carer

The practical support available to you might include help with finances and other aspects of day-to-day life. Having a carer’s assessment can help to identify what might be available to you, such as Carer’s Allowance and other sources of financial support.

Carer’s UK has information about getting financial support. There is also information about money and benefits on the Carers Trust website.

Carer’s Allowance

Carer’s Allowance is one of the main entitlements many carers are eligible for. This is a payment that goes directly into your bank account. You can choose whether you would like to get it paid weekly, or every 4 weeks.

You may be eligible for Carer’s Allowance if you, the person you care for and the type of care you provide meets certain criteria. You must spend at least 35 hours a week caring for someone, which can include helping with washing and cooking taking the person you care for to a doctor’s appointment helping with household tasks, like managing bills and shopping.
UK Government, 2026

You can find out about possible sources of financial support available to you on the Carers UK website.

Your rights at work as an employee

If you are in paid employment, it’s a good idea to find out about your rights to flexible working and adjustments.

Speak to your HR department about how they can support you. For example, you might be entitled to paid carer’s leave, designed to allow you time off for planned appointments and unexpected emergencies.

You could also consider requesting a flexible working arrangement. Carer’s UK has information and tips about applying for flexible working.

If you are self-employed

Depending on your situation, you might be able to make changes to your hours and when you work them.

You won’t have the same statutory employment rights as someone who is employed. However, you might still be eligible for support such as:

Carer’s Allowance, depending on how many hours you work
Carer’s Credit, which is intended to help save towards your pension if you’re not earning or you are on a low income.

More information to help with managing work

There is lots of information available to help with balancing work and your role as a carer.

Age UK has information about balancing working and caring responsibilities and a guide that gives advice for carers.
Macmillan Cancer Support has information about your rights at work while caring for someone who has cancer.

Taking care of your physical and emotional wellbeing

There is no simple way to deal with the demands of being a carer. However, there are things you can do to try to help yourself. We outline some tips below. You might also be interested in our top tips for family, friends and carers offered by our Facebook Support Group.

Following a healthy lifestyle

Following a healthy lifestyle and looking after your mental wellbeing can help to put you in the best position to care for the person with lymphoma.

Talking to your GP

By letting your GP practice know you’re a carer, they can add this to your medical records and offer support. This could include flexibility with appointments, signposting to carers’ support networks, and giving you guidance to help support yourself and the person you care for. Carers UK has guidance on letting your GP know that you’re a carer, what to tell them and how they could help.

Making time for yourself

Build relaxation into your day-to-day routine, for example, go for a walk, have a bath, or use relaxation techniques. Even short ‘pauses’ can have a positive impact – doing things like having a cup of tea, reading a chapter of a book or listening to a podcast. You could dedicate a slot each day for this, like first thing in the morning.

Prioritise making some time for yourself, away from your caring role. Find ways to relax, have fun and do something you enjoy.

Try to keep up with other areas of your life, such as continuing with any leisure activities you enjoy, and spending time with friends and family.

Being a carer for someone with lymphoma can turn your world upside down. I really needed to care for myself. I have never been good at asking for help, as I always saw myself as the carer. But I now knew I needed to ask for that help; the past experiences had shown me that I had worn myself out both physically and mentally. I now needed to be even stronger, so caring for myself was a priority. The first thing I did was speak to the Assistance programme at work and asked for some counselling.
Claire, carer to her husband

Getting support with challenging feelings and low mood

Many people feel low from time to time, and this is particularly true of those who are coping with a caring role.

Our Helpline Services team are here for you, as well as the person who has lymphoma. You can talk to them about any aspect of caring for someone who has lymphoma, including about how you feel.

You might like to be in contact with other carers, for example through:

online forums, such as Carers Connect, hosted by Carers UK
online support groups offered by Carers UK. Lymphoma Action Online Support Meetings are also open to those who care for someone with a lymphoma diagnosis.

You could also ask our Helpline Team if they can connect you with another carer through our Buddy Service.

I joined the Lymphoma Action carers group and would be lost without them now. I used to just read the comments and be more of an observer, but I had a question I wanted to ask and got so much valuable feedback from people. I still recall someone telling me that people like to be asked for help, which was quite an empowering message.
Claire, carer to her husband

If you feel very low