Support for caregivers
Next to a person being treated for leukemia there is almost always someone: a partner, a parent, an adult child, a brother or sister, or a friend. Caregivers keep track of medicines, drive to hospital, take temperatures at night and live with their own fears at the same time. This topic is for you: about a caregiver’s tasks, safety at home, the signs of burnout and how to look after yourself.
01Short answer
02Simple explanation
Being a caregiver means carrying many roles at once: driver, secretary, nurse’s helper, cook, the family’s spokesperson and, above all, someone who loves the patient. Trying to do all of this alone is very hard.
Caregivers often push their own feelings aside: “I have to be strong.” But fear, tiredness, anger, guilt and sadness are normal in caregivers too. These feelings do not mean you are a bad caregiver.
During leukemia treatment, one of a caregiver’s most important jobs at home is to spot warning signs in time: fever, bleeding, breathlessness, a change in alertness. Knowing them in advance calms both you and the patient.
Looking after yourself is not selfish. Without sleep, food, short breaks and a chance to talk, you cannot go the distance. As they say on planes: put on your own oxygen mask first.
Give people who offer help specific jobs: “do the shopping”, “pick the child up from school”, “bring a meal on Thursday”. This lightens your load and gives loved ones a way to be useful.
03Scientific explanation
The caregiving load: according to the NCI review of family caregivers and a 2016 scientific paper, family members caring for people with cancer often face high stress, anxiety, depression, sleep problems and too little attention to their own health. They frequently carry out medical tasks, such as giving medicines, monitoring symptoms and caring for a catheter, without special training.
Support works: according to a 2010 meta-analysis that combined 29 randomised trials, psychoeducation, skills training and therapeutic counselling programmes for caregivers reduced caregiver burden, improved the ability to cope, increased self-confidence and improved aspects of quality of life, with small to medium effects.
Safety at home after chemotherapy: according to the American Cancer Society, it generally takes at least 48 hours for the body to get rid of most chemotherapy, and it can be present in urine, stool, vomit and other fluids. If body fluids need to be touched during this time, wearing two pairs of disposable gloves, washing hands with soap afterwards and washing soiled clothes and bedding separately from other laundry in a washing machine is advised. The exact time depends on the medicine, so ask your team.
The caregiver’s mental health: according to the American Cancer Society, a cancer diagnosis also affects the mental health of caregivers and family members; anxiety, depression and loneliness are common in them too. NCI and Macmillan advise caregivers to talk to their own doctor, join support groups and plan time for rest.
04What happens in the body?
Urgent signs in the patient: call straight away
Call the hematology team’s 24-hour number or emergency services (103, 112) straight away if: the temperature is 38 °C or higher (or above the threshold the team gave); there is shivering, sudden weakness or confusion; breathing becomes difficult; there is bleeding that does not stop, vomiting blood or black stools; or there is redness, pain or discharge around a catheter. Do not wait until morning. If you yourself feel hopeless or have thoughts of harming yourself, ask for help straight away too.
Getting organised at home
Keep a notebook or phone notes: medicines and their times, temperatures, test results, questions. Keep the team’s numbers, the date of the last chemotherapy and the diagnosis written down by the door. Have a thermometer ready. Pack a bag for an urgent hospital trip in advance.
Precautions after chemotherapy
Unless the team tells you otherwise, wear two pairs of gloves when cleaning up body fluids during the first 48 hours after chemotherapy. Wash soiled clothes and bedding straight away, separately, in hot water in a washing machine; if you cannot wash them straight away, keep them in a sealed plastic bag. Then wash your hands with soap.
Signs of burnout
Constant tiredness, sleeplessness or sleeping too much, irritability, losing interest in things you enjoy, frequent colds, headaches and back pain, loneliness, the thought “I can’t do this any more”. If you have these signs, it is not weakness; it is time to ask for help.
Looking after yourself and sharing the load
Take small breaks during the day. Sleep and eat as well as you can. Do not miss your own check-ups and vaccines, especially the seasonal flu vaccine, which protects the patient too. Set up a rota within the family. Talk to someone you trust and, if possible, join a caregivers’ support group.
Questions you can ask the team
Which signs should I call about, and on what number? How should I give medicines at home? How do I look after the catheter? How long should I take precautions after chemotherapy? Is there a psychologist or support group for caregivers? Can I meet a social worker?
05The caregiver’s resilience cycle
Four steps to keep your strength on a long road.
06A caregiver’s tasks and sources of help (simplified)
| Area | What it includes | Who can help |
|---|---|---|
| Medical | Medicines, temperature, watching symptoms, catheter care | Nurse, hematologist, pharmacy |
| Practical | Transport, shopping, meals, housework | Family, friends, neighbours |
| Emotional | Listening, being there, keeping hope | Psychologist, support groups |
| Communication | Talking with the doctor, keeping the family informed | One “contact person”, a shared message group |
| Money and paperwork | Costs, leave from work, social support | Social worker, employer |
| Self-care | Sleep, food, rest, your own health | A rota with family members, your own doctor |
* This table is general information. All instructions about medical care at home come from your hematology team.
07Key terms
- Caregiver
- Someone close who looks after the patient, usually unpaid.
- Caregiver burden
- The physical, emotional and financial strain of caregiving.
- Burnout
- Physical and emotional exhaustion from long-term stress.
- Respite
- Handing care to someone else for a while so the caregiver can rest.
- Psychoeducation
- Structured teaching about the illness and ways of coping.
- Body fluids
- Urine, stool, vomit, blood, sweat and so on.
- Disposable gloves
- Protective gloves that are thrown away after one use.
- Contact person
- One person who keeps the family informed.
- Social worker
- A professional who helps with practical and financial matters.
- Support group
- Meetings where caregivers share experiences.
08Key points
- A caregiver’s feelings are normal and important too.
- Know the warning signs and the team’s number.
- Call straight away for a temperature of 38 °C or higher.
- Handle body fluids carefully after chemotherapy.
- Give people who offer help specific tasks.
- Your own sleep, food and vaccines matter too.
- Signs of burnout are a signal to ask for help.
- Support programmes for caregivers bring real benefits.
09Frequently asked questions
Is it all right to cry in front of the patient?
Yes, you do not have to hide your feelings. Crying together can sometimes bring you closer. But it is good to have someone else you can share your feelings with too, so you are not letting everything out only in front of the patient.
I feel guilty when I take time for myself. Is that normal?
Many caregivers feel this. But rest restores your strength, and that means better care. Even short breaks make a difference.
We keep arguing. What can we do?
Illness and treatment wear you both out, and irritation is natural. Talk at a calm moment and name your feelings. Medicines such as steroids can affect mood too. If arguments are frequent, a psychologist can help.
What should I do if I get ill myself?
If you have a fever, cough or diarrhoea, hand over care to someone else for a while if you can, wear a mask and wash your hands often. Let the team know too. It helps to agree on a back-up caregiver in advance.
Can I hug the patient after chemotherapy?
Yes. Hugging, kissing and being in the same room are not dangerous. The precautions in the first days apply only to direct contact with body fluids. To protect against infection, avoid close contact when you yourself are ill.
I live far away. How can I help?
Phone and video calls, help with paperwork and costs, short visits so the main caregiver can rest, keeping the family informed: all of these are real help.
10Questions for your doctor
Take these questions to your appointment. The ones you save are collected on the “My questions” page and stay on this device only.
What should I watch for when caring for my loved one at home?
Which signs mean I should call straight away?
As a caregiver I feel exhausted too; can I get help?
How can I keep track of medicines and their timing correctly?
12Sources
- National Cancer Institute (NCI). Support for Caregivers of Cancer Patients
- National Cancer Institute (NCI). Family Caregivers in Cancer (PDQ®) – Patient Version
- National Cancer Institute (NCI). Caring for the Caregiver
- American Cancer Society. Caregivers and Family
- American Cancer Society. What a Cancer Caregiver Does
- American Cancer Society. Mental Health and Distress
- American Cancer Society. Chemotherapy Safety
- Cancer Research UK. Chemotherapy safety at home
- Macmillan Cancer Support. Supporting someone with cancer
- NHS (UK). Support and benefits for carers
- CA: A Cancer Journal for Clinicians, 2010. Interventions with family caregivers of cancer patients: meta-analysis of randomized trials
- Cancer, 2016. Caring for caregivers and patients: Research and clinical priorities for informal cancer caregiving