A guide for caregivers

If someone close to you has a blood disease or cancer, you have probably taken on a role you were not ready for. Caring for a patient is valuable and sometimes exhausting. Caregivers often say after a while that they put too much of the load on their own shoulders. This guide is for you.

What does your help look like?

Every family and every patient is different, and there is no single right way. Caregivers usually take on these tasks:

• Getting to visits and treatment sessions
• Keeping the file, the test results and the list of medicines
• Going along to the visit and taking notes
• Helping with preparing food and shopping
• Helping with personal care if the patient has become weak
• Coordinating services and contacting the treatment team
• Emotional support: listening and being there

You do not have to do all of it yourself. It is better to talk with the patient about what help they want and what help they do not want.

At visits

• Prepare the documents: test results, pathology and imaging reports, the list of medicines and allergies.
• Take notes. Many patients cannot remember everything after the visit. Ask whether the conversation may be recorded.
• Write the list of questions in advance and do not leave the office until you have answers.
• Ask whom to ask the later questions.
• If you help from a distance, it is better if at least one family member has the patient’s written permission to receive medical information.

Symptoms to report to the treatment team quickly

The patient may play things down. You see from the outside better.

• A fever of 38 degrees or higher, chills, a cough or sore throat, burning when passing urine, or redness and swelling at the catheter site: call at once. An infection during treatment can be serious. Check with the treatment team before giving a fever-reducing medicine.
• Dehydration: dizziness, weakness or confusion, dry mouth, little urine. Watch after diarrhea or vomiting and keep fluids within the patient’s reach.
• Severe or continuing diarrhea, continuing vomiting that does not allow food or medicine to be taken.
• Severe belly pain, vomiting, a racing heart, confusion in a patient who has constipation.
• Bleeding that will not stop, or bruising without a reason.

If you see more dangerous signs (sudden shortness of breath, chest pain, weakness or numbness on one side of the body, a drooping face, slurred speech, pain and swelling in one leg), call 115 (Iran’s emergency number). Read the guide “When should I call urgently?”.

Note: do not give the patient any medicine, stop it or change it without the doctor’s advice. This includes painkillers, fever medicines, supplements and herbal products.

Helping at home

• Preventing infection: wash hands well and ask the people around you to do the same. Keep the patient away from people with colds. Cook food thoroughly.
• Tiredness: it is the most common side effect and is not relieved by a full sleep. Help the patient plan rest and leave important tasks for when energy is there. Light walking can be useful.
• Food: small, frequent meals and enough fluids. If appetite or weight drops, talk with a dietitian.

Look after yourself too

• Do something for yourself for at least 15 to 30 minutes a day.
• Do not forget regular meals and sleep, physical activity and your own check-ups.
• Ask for help. Tasks such as shopping, child care, taking the patient to visits and telling relatives can be handed to others.
• Some caregivers have feelings they cannot tell the patient. Talk with a friend, a counselor or someone you trust.
• Signs of strain: tiredness, trouble sleeping, a change in appetite, headache, anxiety or depression. If they continue for more than two weeks, talk to a doctor.
• Get to know one or two people on the treatment team, for example a nurse or a social worker, and stay in touch with them.

Every patient’s treatment plan is different; ask your doctor about your own situation.