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Guide for patients and loved ones

For the caregiver

The caregiver is the unseen part of the team. Your health is part of the treatment too.

Last updated: ~1 min read
A cup of tea on the window
Figure 1.A cup of tea on the window

01Short answer

A caregiver keeps track of medicines, the calendar, food, hygiene and symptoms, and is also emotional support. It helps to keep one notebook for medicines, appointments and tests; keep an emergency number list; know the fever rule; share duties with friends and relatives; and take a short break every day. Tell a doctor or psychologist about signs of burnout: poor sleep, irritability, hopelessness or neglecting your own health. Remember your own vaccines and hand hygiene too.

02Simple explanation

Caring for yourself is a necessity, not a luxury.

Ask for specific help.

03Scientific explanation

Long-term caregiving stress raises the risk of sleep problems, anxiety and depression; support programmes reduce this risk.

Seasonal flu vaccination and other recommended vaccines for close contacts help lower the patient’s infection risk; check which ones with the team.

04What happens in the body?

Organisation

A notebook or app for medicines, appointments, tests and questions. Emergency numbers in plain sight.

Watching for signs

Fever, chills, bleeding, breathlessness or confusion mean calling the team at once.

A lantern in the garden
Figure 2.A lantern in the garden

Yourself

Sleep, food, movement and time with friends. If you notice signs of burnout, ask for help.

A blanket on an armchair
Figure 3.A blanket on an armchair

05A caregiver’s day

Four steps.

Organise — One notebook.1OrganiseOne notebook.
Watch the signs — The fever rule.2Watch the signsThe fever rule.
Ask for help — Specific tasks.3Ask for helpSpecific tasks.
Rest — A break every day.4RestA break every day.
SafetyNo important sign is missed.
ResilienceStrength lasts the long road.

06Key points at a glance

TopicIn brief
OrganisationA notebook or app for medicines, appointments, tests and questions. Emergency numbers in plain sight.
Watching for signsFever, chills, bleeding, breathlessness or confusion mean calling the team at once.
YourselfSleep, food, movement and time with friends. If you notice signs of burnout, ask for help.

07Key terms

Burnout
Physical and emotional exhaustion after long stress.
Respite care
Temporary cover so the caregiver can rest.
Fever rule
The rule of calling the team at once with a fever.

08Key points

  • Organise everything in one notebook.
  • Know the fever rule.
  • Ask for specific help.
  • Rest every day.

09Frequently asked questions

I feel guilty when I rest.

That is natural, but rest makes you a better helper.

Who can I turn to?

The team’s nurse, social worker or psychologist.

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.

  1. I feel guilty when I rest.

  2. Who can I turn to?

My questions

12Sources

  1. National Cancer Institute (NCI). Caring for the Caregiver
  2. National Cancer Institute (NCI). Adjusting to Cancer
  3. Cancer Research UK. Coping with cancer
  4. National Cancer Institute (NCI). Female Fertility and Cancer Treatment
  5. National Cancer Institute (NCI). Male Fertility and Cancer Treatment
  6. National Cancer Institute. NCI Dictionary of Cancer Terms: remission
  7. National Cancer Institute (NCI). Follow-Up Medical Care
  8. National Cancer Institute (NCI). Side Effects of Cancer Treatment
  9. National Cancer Institute. NCI Dictionary of Cancer Terms: absolute neutrophil count
  10. National Cancer Institute (NCI). Support for Families When Someone Has Cancer
Medical disclaimerThis information is for educational purposes only and does not replace medical advice.
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