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Taking cancer on through

Managing Work

Expert advice on how to manage work, return to work or find work after a cancer diagnosis as a patient or carer.

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Working carers

Introduction

You are a working carer if you are an employee and provide unpaid support to someone who could not manage without your help. This could be a family member, a friend who lives with you, or someone else who relies on you regularly for help.
 
It can sometimes be very difficult to manage work and care at the same time, and many carers feel torn between caring for their loved one and fulfilling their work responsibilities. Each situation will be unique, and flexibility is key to meeting the changing nature of the demands on your time and mental health.
 
It is important that you are clear on what it may mean for you to be a working carer, so that you can: 

  • Fully accept your caring role  

  • Understand how this will shape your day-to-day life for the foreseeable future 

  • Recognise that your role will change over time 

  • Acknowledge that you will also need time to take care of yourself 

  • Be ready and willing to ask for support from your employer, your family, friends and specialist organisations 

  • Plan ahead 

More information on the above points is included in the section ‘adjusting to your new role as a working carer’.

It is also important to remind yourself that there is life after you’ve been caring for a loved one and to learn how to move forward after this experience. 

Adjusting to your new role as a working carer

Introduction

It is deeply distressing when a loved one receives a cancer diagnosis. At this early stage, everything often happens very quickly, and you may feel overwhelmed and in shock. It is a particularly challenging time and often the focus will be on simply getting through each day. 

Having to combine caring responsibilities with work is often challenging. There are several practical steps you can take to help you adjust to this new situation and your new role as a working carer. 

Each situation will be different. In some cases, you might have limited caring responsibilities, or you might become a full-time working carer if, for example, your child has cancer and needs a parent to support them constantly while undergoing treatment.  

There is evidence that caring for someone for more than 5 hours a week impacts on your work and health and often your earning potential. It is important to talk about this with your line manager.

Accepting your role

Identifying yourself as a carer may well be the most significant first step on your journey to balance work and caring responsibilities. One of the challenges faced by those who find themselves ‘helping out’ is that they do not identify themselves as a carer and do not reach out to friends or colleagues to share their experiences, or to specialist organisations to get the support they need. 

Self-identifying as a carer and letting your line manager know may help you have a more positive experience. Please understand that this may be a long journey – ‘a marathon, not a sprint’. There may also be support available from your employer, especially in larger organisations.

Changing roles

You can become a carer at any age, and it can be confusing at the beginning when you notice that roles are changing. For example, “My mother always took care of me, now I have to care for her”. This change of roles can be uncomfortable and difficult for all concerned.

Even though caregiving may feel new and challenging to you, many carers say that they learn what works best in their individual circumstances as they accompany their loved ones through the cancer journey. Common challenges include:

  • Patients may only feel comfortable with a spouse or partner taking care of them

  • Carers with children struggle to take care of a parent

  • Adult children with cancer may not want to rely on their parents for care

  • Carers may have health problems themselves, making it physically and emotionally difficult to take care of someone else

Whatever your new role is, it is very common to feel confused and stressed at the beginning. Acknowledge and share your feelings with others if you can. You may find the help you need by joining a support group or seeking professional help from a trained therapist or counsellor.

Dealing with emotions

Each situation will be different depending on the type of cancer, the treatment regimen, the prognosis and the response of other family members and friends. Another important factor is the way the person diagnosed with cancer can handle their own emotions as well as the physical impact of treatment.

It is very common to feel out of control, sad, anxious, guilty and/or angry. It’s important to acknowledge these emotions and to find ways to express and share them: with people around you, through a local support group, or with professional support [link to mental health section/support]. Check with your employer if you can access professional support if you feel you need this.

Adjusting to your new role in its early days

Becoming a carer can be a challenging, stressful and demanding experience. But it can also be a rewarding experience over time, and some people get a lot of satisfaction from being able to look after a loved one when they are not well. Becoming a carer may also bring people together as family and friends become more closely involved. 

Tips to help you adjust to your new role
There are several practical ways to help you adjust to your new role:  

  1. Gather an overview of what you expect from both your role as a carer and as an employee. It might help to take a step back and think through what demands your caring role will place on your work and vice versa. This will be a good start to planning your time over the next week and the weeks thereafter  
  2. Make a weekly plan plan and use this as a guide, but be flexible. Ask your employers about your entitlements, such as flexible working, as this will help with planning ahead. It will be important that you also set time aside for self-care and for you to recharge
  3. Prioritise your activities: what’s urgent and important? Think about unexpected hospital visits; how can you best prepare for these? Who can help? What activities can be delegated?  
  4. Ask for help. Many carers say that, looking back, they took too much on themselves, or wish they had asked for help from friends or family sooner. Think long-term (‘a marathon, not a sprint’) and be careful about exhausting yourself as you will not be able to care for someone adequately if you are running on empty. Take an honest look at what you can and can't do. What things do you need or want to do yourself? What tasks can you turn over or share with people? Be willing to let go of things that others can help you with. Some examples may be:

    Household tasks, such as cooking, cleaning, shopping, or gardening

    Taking care of the children or picking them up from school or activities

    Driving your loved one to appointments or picking up medicines

    Being the contact person to keep others updated

  5. “Saying no” to set your boundaries and to protect yourself. This might be difficult at the beginning but it will probably be needed for the longer term
  6. It gets easier. It’s important to know that your role as a carer might feel overwhelming at the beginning, but is likely to get easier over time. If you are struggling, reach out and ask for help and support. Most support organisations also offer support for carers. The oncology team or your local healthcare centre will be able to help
  7. Self-care. Make sure to set time aside for self-care so you have enough energy for both your working and caring roles. Some examples are going for walk or practicing yoga. Doing something that you enjoy can take your mind off caring for a few hours. [link to mental health section; link to yoga videos; link to physical activity section]
  8. Use your own skills and strengths to support yourself. For example, if you're not good at planning, think about who can help you. What skills and strengths do you have to support yourself?

Be prepared for some people not to help

When someone has a serious illness such as cancer, friends and family are often willing to help, but it's important to realise that some people may not be able to help you. Some common reasons are:

  • Some people may be coping with their own problems

  • Some may not have the time

  • Some may be afraid of cancer or may have already had a bad experience with cancer, meaning they don't want to get involved and feel the pain all over again

  • Sometimes people don't realise how hard things really are for you. Or they don't understand that you need help unless you ask them for it directly

  • Some people feel awkward because they don't know how to show they care

If someone isn't giving you the help you need, you may want to talk to them and explain your needs. Or you can just let it go. But if the relationship is important, you may want to tell the person how you feel. This could avoid hurting your friendship in the long run by preventing the build-up of resentment or stress.

Communication at work

While you are coming to terms with your new role, it’s important to keep your employer informed about your changed circumstances. Don’t forget to ask about any formal entitlements and discuss how best to inform your team or colleagues about your new circumstances. For your employer to allocate the right amount of work to you while you are caring for your loved one, it will be important to schedule regular meetings and to be as honest as you can by communicating your needs.

Step-by-step guide: managing work as a carer over time

Introduction

Balancing the different roles of being an employee and a working carer is made more difficult because of the changing nature of cancer, as well as the needs of the person undergoing treatment.

This uncertainty is at its most acute in the first months after diagnosis and treatment, but you may well be facing many months or possibly years of changing caring responsibilities. The following timeline will give you an idea of what to expect over the coming months:

Step-by-step guide: managing work as a carer over time

Living well as a carer

Looking after yourself may not seem like a priority as you dedicate your time and energy to caring for someone else. But it is important to maintain your own health and wellbeing so that you can continue providing the care that your loved one needs. If you feel tired and struggle coping with being a working carer, step back and reassess where you will need more help from others and then communicate this clearly.

Being in good physical and emotional health enables you to support your loved one or friend with regular and better quality care. The person that you are caring for will be relieved to see that you are looking after yourself and not weighed down by caring for them. You may want to develop a wellbeing plan that includes:

  • Staying physically active. Do what you enjoy, which could be anything from regular walking, swimming and gardening to active hiking and running

  • Keeping up with friends and people outside of the caring environment

  • Eating regularly and healthily

  • Getting a good night’s sleep whenever possible

  • Arranging substitute care and taking complete breaks

  • Reaching out for advice and support to community groups as well as to specialist cancer or care organisations

  • Staying in regular contact with your own doctor who can help you monitor how you are doing overall

Don’t forget that work can also be a source of energy, connecting you with people outside of the caring environment and providing social and financial support. It’s important that you keep your own life and needs on track as much as possible.

Dealing with emotions (‘guilt traps’)

There are many ‘guilt traps’ as a working carer. You can be bombarded with opinions and expectations about what you should or should not do to be a good carer or loving spouse, friend, son or daughter.

Similar feelings of guilt may also arise through wanting to do a good job at work. This can cause negative and unhelpful thinking patterns, such as “I can never do things right” or “I feel guilty meeting my friend for coffee”.

Below are some tips on how to deal with feelings of guilt and difficult emotions you may feel:

Dealing with emotions

Conversations with your employer

In the early stages following a cancer diagnosis, the treatment plan is often unclear. You are going to need some flexibility at work while treatment plans are put in place and as you settle into your new role as a working carer.

Once you have a better understanding of the demands on your time (usually after the first few months), you may need to change some of your work responsibilities or temporarily reduce your hours. Depending on the intensity of your caring role, and particularly if you are caring for a child with cancer where overnight stays in hospital may be required, you might have to take leave sometimes at short notice, or even give up work for a little while. 

Check what’s possible with your employer to create the flexibility you need. For example, you might be entitled to use unpaid leave, to take a sabbatical, a career break, annual leave or compassionate leave. Agree on a plan with your employer that you can use as a guide, and review this plan regularly with your employer.

Your role as a working carer is coming to an end 

When your loved one is in remission, meaning that the signs and symptoms of cancer are reduced or have completely disappeared and they no longer rely on your care, you will most likely need a few months to recover from the stresses and strains of being a working carer. This will allow you to gradually return to a ‘normal’ life as an employee, a colleague, family member and friend. 

At this stage, you might want to start thinking about the best way to fully return to work. Have a conversation with your line manager to agree on the best way to increase your working hours and responsibilities and your longer-term career developments that might have been on hold for a while. 

Please see the sections ‘Caring for someone with advanced or terminal cancer’ [link to section 4.4] and ‘Returning to work after a bereavement’ [link to section 4.5] for support and further information under these difficult circumstances. 

Caring for someone with advanced or terminal cancer

Introduction

People can work and live with advanced cancer for many years, and while this is the case you might find you are able to work ‘normally’. As the cancer progresses, you are likely to face new challenges, choices and decisions about long-term care. Your involvement as a working carer might change and you might need to re-assess the balance between your work and life as a carer.

When your loved one is no longer responding to treatment or is diagnosed with very late-stage cancer, you will need to think about end-of-life care and how much or how little you can and want to be involved. You will also need to think about how much you continue to work.

Your role as a working carer becomes much more challenging at this stage as you try to balance work commitments with the impact of new demands on your time, energy and emotions.

Dealing with emotions

Caring for a loved one comes with emotional highs and lows, whether it is ongoing care in the case of advanced cancer, or end-of-life care in the case of terminal cancer. You may feel very lonely when you are trying to balance full-time care with work. It can magnify other emotions that you may be experiencing. It can be hard for others around you to really understand your challenges and emotional burden if they haven’t had a similar experience.

Self-care is crucial to help maintain your energy levels and emotional balance, while strengthening your resilience and ability to deal with stressful situations. Feeling connected, having a sense of belonging and being valued in your own right are hugely important. It can be difficult to look after yourself if you are feeling isolated or don’t know what to do. Ask yourself:

  • What kind of support do I need from other people? 

  • How can work or colleagues play a role?

  • Are there any local organisations for carers that can support me?

  • Are there any activities that I can build into my daily routine to help me connect with others?

Balancing work and care

When your caring role becomes more intensive and/or time-consuming, it is important to stay in touch with work as much as possible, even if you have decided to take a career break to fulfil your caring role. Work could help you move forward when your caring role eventually comes to an end.

For most of us, work fulfils more than just our financial needs. It can give us a sense of belonging and connectedness, intellectual satisfaction, development and the opportunity to influence and contribute. Ask yourself:

  • What are my reasons for working? 

  • Which reasons for working are the most important to me, and how much do I want to focus on these?

  • Which reasons for working are less important for now and therefore need less time and attention?

For example, you may want to put ‘intellectual satisfaction and development’ on hold for a while, which might mean turning down training or promotion opportunities at work. It’s fine to let it go for now, as caring for your loved one takes priority at this stage and there will be other opportunities in the future. You can still register your interest with your employer and explain why you want to pass on opportunities for now.

Making the right choices to support yourself can give you a feeling of control; this is important when a lot of other things feel out of your control and uncertain.  

Below you’ll find some additional practical tips:

  • Be honest with yourself: how much can you really be involved? What are your limits or boundaries?

  • Focus on what you can control: especially at times when many things are out of control

  • Take (short) breaks from your caring role. Even a single day away from your caring role can do wonders and help you feel recharged. What temporary replacement care might be needed and who can help you? 

  • Self-care: looking after yourself includes eating healthily and maintaining a good sleep and exercise routine, as well as allowing yourself time to relax and be with friends and family

  • Temporarily reduce work responsibilities/hours: what aspects of work can you put on hold for now or delegate to colleagues?

  • Residential care: if caring has become very difficult, it may be best for both you and your loved one to consider external care such as a hospice or a residential care home. You might feel guilty considering this option but, if your caring responsibilities become too much and too overwhelming, you need to look at alternatives – both for your own well-being and for that of the person you are looking after

  • Find ways to connect with others to avoid the risk of social isolation or withdrawal

  • Take your own advice and ask yourself: ‘If a friend came to me with this worry, what would I tell them?’. Imagining your situation from the outside can often provide a different perspective and new ideas

Involvement in end-of-life care

There will come a time when your caring role changes dramatically because the person you look after is nearing the end of their life. You may need to decide between seeking specialist nursing support in your home or a hospice. 

Many employers understand the challenges of end-of-life care and offer short-term flexible working or unpaid leave.

Conversations with your employer

With the increasing intensity of your caring role, you may need to change some of your work responsibilities, reduce your hours or even give up work for a little while.

Check what’s possible with your employer to create the flexibility you need. For example, you might be entitled to use unpaid leave or take a sabbatical, a career break, (part of) your annual leave or compassionate leave. Agree on a plan with your employer that you can use as a guide and review this plan regularly with your employer.

Returning to work after a bereavement

Introduction

It will be important for you to take the time you need to grieve for the death of a loved one and to adjust to your feelings of loss. It’s common to feel vulnerable and unsure for a while. For many who have experienced a recent loss, work may be the only part of life that provides normality and routine. Returning to work can be difficult though. If you are grieving, you may be dreading the thought of facing your colleagues again. You may worry about being unable to perform at work or about breaking down emotionally. 

There are no time limits on grief and no set pattern to the emotions that you may feel.

It is often quite common to find it difficult to concentrate. The way each of us grieves is unique; there is no right or wrong way.

Maintaining regular contact with your line manager should mean that they understand something of what you have been and are going through. They can support your return to work through, for example, referring you to specialist support services and enabling you to make a phased return to work if you wish.

Working after bereavement to help you move forward

For some, a return to work as quickly as possible will help them cope with bereavement, but others may require some space before returning to work. Each of us is unique and there is no right or wrong way to return to work.

You may find you need temporary adjustments at work to help you cope with your grief. Most people will understand that it is difficult giving 100% to work immediately after the death of a loved one. If this is the case for you, talk to your line manager or HR department about the possibility of a phased return. It is important that you do what is right for you and that you communicate your needs to your line manager and colleagues.

It is not unusual for the full impact of a bereavement to be delayed for some months or even years after it has happened, leaving you feeling vulnerable and confused at a time when there is not as much support around you. If that is the case, it is important to be honest with yourself, recognise what is happening and ask for support. Your HR team will be able to support you at this very difficult and challenging time. 

Below are some further practical tips that might be helpful:

  • Listen to your own feelings and ignore what others tell you about what you should and should not be feeling 

  • Prepare for your first day back to work with your line manager. Do you want this to be announced or not? If you do, how? Who will you meet first on the day of your return? Who else are you going to see? Who do you want to see? What activities will you be doing? What would you like to say to your colleagues? Is there a safe, private place at work to recover if you suddenly feel emotional?

  • Help your colleagues and manager to work with you. They will not automatically know how best to support you unless you tell them 

  • Be realistic about your work commitments: it’s better to ‘under-commit’ for a little while

  • Regularly discuss, review and adjust your phased return with your employer. You may be able to agree more flexible hours, a phased return or even a sabbatical until such time as you feel able to get back into a routine

Our ability to cope and adapt as human beings is immense. Many people see work as something solid and predictable when the rest of life feels uncertain and chaotic.

Carers often say that their experience of caring has made them stronger and more resilient; attributes that are of immense value at work and in life. What have your learned from your experience? What skills, strengths and experiences from your caring role can you take forward in your work, future career and in your life as a whole?