Key points
- Caregivers help with daily activities, giving medicines, taking the patient to appointments, coordinating care and emotional support; it is valuable work, and it is also demanding [1].
- A temperature of 38 °C or higher during chemotherapy and bleeding that does not stop are urgent; contact the care team straight away [3, 4].
- Washing hands often, keeping the patient away from sick people and crowds, and food safety are the most important ways to prevent infection [3].
- About 4 in every 10 caregivers had symptoms of depression; looking after yourself is part of looking after the patient [7, 1].
- Ask others for help: many caregivers say they wish they had asked for help sooner [1].
- Programmes that teach and support caregivers have reduced the burden of caregiving and improved their ability to cope [8].
What does being a caregiver mean?
A caregiver is someone who helps a loved one who is ill; often a spouse or partner, child, parent or friend, and usually unpaid. They may live with the patient or help from a distance [2]. A caregiver's tasks can include [1, 2]:
- helping with daily activities such as meals, bathing, dressing and moving around
- giving medicines and helping with treatment tasks at home
- making appointments, taking the patient to visits and reporting problems to the care team
- housework and shopping, and sometimes handling money matters
- emotional and spiritual support
Every family gives care in its own way, and there is no single right way [1].
Practical tasks at home
- 1
Keep a medical notebook
Write down the dates of tests and treatments, and the name, dose and timing of every medicine, and take this notebook to every visit [1]. To keep track of chemotherapy appointment dates, you can use the chemotherapy calendar.
- 2
Give medicines correctly and safely
Ask the care team when and how each medicine should be taken and what to do if a dose is missed. Cancer medicines taken by mouth also need care at home: learn from the nurse or pharmacist how to protect yourself, store them properly, give them correctly, clean up a spill and get rid of leftover medicine [6]. Before giving any over-the-counter medicine, even a painkiller or a medicine for fever, check with the doctor [3].
- 3
Prevent infection
Chemotherapy lowers the number of white blood cells, and on some days of each treatment cycle the risk of infection is higher [3]. Wash your hands often with soap and water, especially before eating, and ask people around you to wash their hands too. The patient should stay away from people who have a cold or are ill, from crowds and from people who have just had a live vaccine. Meat, fish and eggs should be well cooked, and raw fruit and vegetables washed well [3]. More details in the guide Low blood counts and preventing infection.
- 4
Help with eating
People with cancer often need more protein and energy [5]. If appetite is poor, 5 to 6 small meals a day, high-protein and high-calorie foods, and drinking most fluids between meals (not with them) help; keep small portions of the patient's favourite foods ready [5]. A dietitian can make an eating plan with you and the family [5]. See also the guide Nutrition during cancer treatment.
- 5
Note down and report symptoms
Write down the patient's temperature, pain, nausea, eating and drinking, and sleep so that you can report them accurately to the care team. Take pain seriously: the patient does not have to put up with pain, and pain can be controlled throughout treatment; if the patient holds back from mentioning it, speak up for them [1]. See the guide Cancer pain.
- 6
Keep a contact number to hand
Get the number of a member of the care team (for example a nurse) whom you can call after a visit with a question or problem [1].
Talking with the care team
- Write your questions and concerns down in advance and ask the most important ones first [1].
- Take notes, or ask whether you can record the conversation [1].
- If you do not understand an answer, ask for it to be explained in simpler words [1].
- Tell the doctor about any advice you have found online or heard from others; some advice is wrong or does not fit with the treatment plan. Use only trusted sources [1].
- If you have a lot to discuss, ask for a longer appointment [1].
- The patient has the right to ask another doctor's opinion; most doctors welcome a second opinion [1].
- Tell the care team how you yourself are doing; you are an important part of the team, and they need to know when you are tired and under strain [1].
Some useful questions [1]: Can the patient go to treatment alone, or should someone go with them? What side effects might happen? What can we do to make the patient more comfortable? After treatment, what should we watch for, and when should we call you?
Make decisions together with the patient and listen to what they say; sometimes the best help is simply listening [1].
When should I call the doctor?
Contact the care team straight away or take the patient to an emergency department if they have:
- a temperature of 38 °C or higher or chills during chemotherapy; infection at this time can be dangerous and needs urgent treatment [3].
- signs of infection: cough or sore throat, diarrhoea, ear or sinus pain, headache or a stiff neck, skin rash, sores or white patches in the mouth, redness or swelling where a catheter enters the body, or urine that is bloody, cloudy or painful to pass [3].
- bleeding that does not stop after a few minutes, blood in vomit, red or pink urine, or black or bloody stools [4].
- a bad headache, changes in vision, confusion or severe sleepiness [4].
Call the doctor before giving the patient a medicine for fever; these medicines can hide the signs of a serious problem [3]. In any emergency, such as severe shortness of breath, chest pain or collapse, call your local emergency number.
For yourself: if you have felt sad, worried or hopeless for more than 2 weeks, talk to your own doctor; if you have thoughts of harming yourself, call your local emergency number or a crisis line straight away [1].
Looking after yourself
Most caregivers put their own needs and feelings aside to focus on the patient. This can work for a short time, but it is hard to keep up and it is not good for your health; if you do not take care of yourself, you will not be able to take care of someone else [1].
Sadness, fear, anger, guilt, loneliness or grief for life before the illness are all normal; many caregivers describe it as being "like a rollercoaster" [1]. In a review of 30 studies of more than 21,000 caregivers, about 4 in every 10 caregivers had symptoms of depression and nearly half had symptoms of anxiety [7]. The strain of caregiving is greater when the patient comes home from hospital, when the patient's physical or mental health is poor, when the caregiver has health problems of their own, or when they are juggling work and caregiving [2].
Know the signs of burnout: tiredness and lack of energy, trouble sleeping, headaches, changes in appetite or weight, getting ill more easily, higher blood pressure, and anxiety or depression [1].
Ways to look after yourself
A little time for yourself every day
Every day, take at least 15 to 30 minutes to do something for yourself, however small: a walk, music, a long shower, a book or a short nap [1].
Do not forget your body
Do not put off your own check-ups and screenings, take your medicines on time, eat healthy meals and move for 15 to 30 minutes a day. For better sleep, breathing or relaxation exercises and short naps of 15 to 30 minutes help; if sleeplessness carries on, tell your doctor [1].
Talk to someone
Keep up your routine
Cut back on your usual activities, but do not give them up completely; giving them up entirely increases stress [1].
Be kind to yourself
No one is perfect. Let go of mistakes, it is fine to cry, and forgive yourself; each day is a new chance [1].
Write it down
Writing your feelings and thoughts in a journal helps to ease negative thoughts [1].
Ask others for help
Many caregivers say they took on too much themselves or wish they had asked for help sooner [1]. Getting help also helps the patient: you stay healthier, and the patient feels less guilty [1]. People around you often want to help but do not know what to do, so tell them exactly what you need [1]:
- cooking, cleaning, shopping or picking up medicines
- driving the patient to appointments
- picking the children up from school or looking after them
- keeping the patient company so you can rest a little
- keeping relatives and friends updated on how the patient is
If someone does not help, they may be coping with their own problems, be afraid of cancer or not know what to do; if the relationship matters to you, tell them honestly what you need [1]. Asking for help and taking time for yourself is not a failure on your part as a caregiver [1].
If there are children at home, talk to them honestly in words suited to their age [1]; see the guide How to talk to children about cancer. For the patient's emotional well-being, the guide Anxiety, depression and fear of cancer coming back is also useful.
Frequently asked questions
Is it normal to feel angry or worn out by caregiving?
How do I know if I am burning out?
The patient is short-tempered with me. What should I do?
Patients often take out their fear and stress on the people closest to them. Try not to take it personally, and when the time is right, calmly share your feelings with them [1].
Do programmes for caregivers really help?
In studies, programmes offering information, skills training and counselling for caregivers reduced the burden of caregiving and improved caregivers' ability to cope and their confidence; the effects were small to moderate [8]. If your treatment centre offers such a programme, make use of it.
How can I help if I live far away?
Does the caregiver's job end when treatment ends?
The tasks usually lessen, but some caregivers still worry about the cancer coming back or want to know how to reduce stress in their loved one's life [2]. Talk about these worries together and with the care team.
Notes for physicians (for doctors)
Show detailsHide
- Prevalence: meta-analysis of 30 studies (21,149 caregivers, mean age 52.65 years): depression 42.30% (95% CI 33.31 to 51.29) and anxiety 46.55% (35.59 to 57.52); factors associated with depression: the patient's condition, caregiving burden, duration of caregiving, spouse caregiver, caregiver unemployment, caregiver chronic disease, sleep quality, financial problems and female sex [7].
- Interventions: meta-analysis of 29 randomised trials (1983 to 2009): psychoeducational, skills-training and therapeutic-counselling interventions, mostly delivered jointly to patient and caregiver; small to medium but significant effects on caregiver burden, ability to cope, self-efficacy and aspects of quality of life [8]. Cochrane review 2019 (19 trials, 3,725 participants, all at high risk of bias): may slightly improve caregiver quality of life immediately after the intervention (SMD 0.29; 95% CI 0.04 to 0.53; low-quality evidence), with no effect at 12 months, and probably has little or no effect on caregiver depression (SMD 0.01; moderate quality) [9].
- Factors increasing caregiver burden (NCI PDQ): female sex, older age with the caregiver's own health problems, employment, role strain, the move of care from hospital to home and poor physical and mental health of the patient; suggested interventions include CBT, couples or family therapy, problem solving and skill building (assessing and managing symptoms), psychoeducation and palliative care [2].
- Oral anticancer drugs at home: structured safety education for patients and caregivers (caregiver protection, storage, administration, spill management and waste disposal) using a checklist and the teach-back method [6].
- At each visit, ask how the caregiver is doing, give a contact number for problems between visits and teach the 38 °C fever rule [1, 3].
References
10 referencesShow all referencesClose the reference list
Numbers in the text, such as [1], refer to these sources. Sources with a “Study card” button are summarised in the site’s evidence library.
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- 9Psychosocial interventions for informal caregivers of people living with cancer
- 10Depression (PDQ®)–Patient Version
This page is based on reputable scientific sources and was last updated on 28 October 2026. The content of this website is for educational and informational purposes only and does not replace consultation, diagnosis or treatment by a specialist physician. Consult your treating physician about any treatment decision.
Printed from the website; the full and up-to-date version: https://drdabiri.com/en/guides/caregiver-guide/