Caring is often more than a one-person job. Consider sharing the responsibilities with family, friends, or various support services.
The team will discuss the needs of the person with cancer and recommend the best treatment. They may also refer the person to other specialists to ensure all aspects of their care are covered.
Dealing with health professionals can be intimidating, especially if you haven't done it much before. You may feel overwhelmed with all the new and complex information. It can be frightening to go to a new clinic or treatment centre. Having one contact person in the multidisciplinary team may make you feel more comfortable.
The health professionals and health workers you see may include:
|General practitioner (GP)||responsible for general health and coordinates specialist treatment|
|Surgeon||surgically removes tumours|
|responsible for chemotherapy|
|Radiation oncologist||responsible for radiotherapy|
|Haematologist||diagnoses and treats diseases of the bone marrow, blood and lymphatic system|
|Nurses||provide support and help during all stages of treatment|
|Palliative care specialist and nurse consultant||responsible for control of symptoms such as pain, nausea, depression and anxiety|
|Pharmacist||responsible for dispensing medication|
|Dietitian||supports and educates patients about nutrition and diet during treatment and recovery|
|Physiotherapist and occupational therapist||help with movement and mobility, and assist in preparing the house to accommodate a patient's needs|
|Social worker, psychologist, counsellor, pastoral care worker||help provide emotional and spiritual support and advise on support services|
Try to find health professionals you feel comfortable with, as you may see them frequently. Carers' experiences of working with health professionals varies – some people have good experiences, while others may feel that their role is not acknowledged. If you feel you aren't being recognised as a carer, talk to the health care team about your role. For example, some young carers are not included in important conversations because the health professionals believe that the person is too young to be in the carer role.
- Talk to the person you care for, discuss any questions you both have and write them down beforehand so you don't forget anything. It may help to do some research at the library or on the internet, so you can ask informed questions.
- List all the drugs being taken and their doses, and note any side effects experienced.
- Check with the medical centre about what you need to bring, e.g. test results, scans, blood tests.
- Write down any change in the patient's condition.
- Ask for a longer appointment if you have a lot of questions.
- Take notes or record the discussion with the doctor.
- Write down any specific instructions.
- Check that your notes and understanding are correct.
- Ask the doctor if they can give you printed material or tell you where to find further information.
- Review your notes.
- Record the next appointment.
- Call the doctor for any test results.
- Contact the doctor about changes in the patient's condition.
- Rearrange furniture to make access easier, and remove loose rugs and other tripping hazards.
- Talk to an occupational therapist about changes you can make or equipment you can hire or purchase. This may include putting handrails on the stairs or in the bathroom, or moving the main living area to an easily accessible part of the house.
- Look after your back if you have to lift the person you're caring for. Ask someone, such as a physiotherapist, to show you how to lift safely. You may be able to hire or purchase equipment to help you.
- Use technology such as group text messages or emails to keep others up to date. You may want to start an online diary or blog.
- Ask a family member or friend to keep others up to date.
- Leave a message on the answering machine to reduce some of the time needed to answer calls. You could say something like, "Bill is doing okay with the chemo. He's mainly feeling tired. Thanks for your concern.”
- If you are communicating with children, the booklet may help.
Keep the medication in its original packaging so you always know what type of drug it is.
You should also know the following information about the medication you are administering, or ask the doctor or chemist:
- How should it be given (with food, without food, orally, etc)?
- Is there anything, such as alcohol, that should be avoided while taking the medication?
- Does the drug interact with other drugs or vitamin supplements?
- Are there any possible side effects? What should I do if the person experiences side effects?
- How long will the medicine be needed?
- What should I do if a dose is missed?
- When is the use-by date?
Various organisations can help you with financial issues, such as budgeting, refinancing or counselling. In addition, you can talk to the hospital social worker about financial or practical assistance available, and apply for it as soon as possible. You may be eligible for financial assistance from volunteer bodies, church groups or your local council.
An Enduring Power of Attorney differs from a Power of Attorney because it means you can act on behalf of the person you care for even if they lose the capacity to make their own decisions.
Consult a solicitor for more detail about this and advice about how to make legal arrangements.
- Use a pain scale to help you understand the intensity of the person's pain. This may help them communicate the need for extra doses of pain medication.
- Keep a diary of the patient's pain levels and symptoms. Let the health care team know how the medication has been working and notify them of any changes.
- You may be concerned if the person needs stronger pain relievers, but addiction is not an issue for people with cancer. Pain relief medication helps them stay as comfortable as possible.
- Try relieving pain and discomfort with hot-water bottles, ice packs or gentle massage.
Treatments such as chemotherapy and radiotherapy damage and kill cancer cells but also affect healthy cells. This may cause side effects such as:
- loss of appetite
- fatigue and tiredness
- mouth or throat sores
- taste changes
- constipation or diarrhoea
You may feel anxious because you want the person to eat well so they can cope with the side effects from the treatment and recover quickly. However, it's not necessary to follow a strict eating plan.
A dietitian, doctor or nurse can provide advice on a suitable eating plan. The tips below will supplement their advice.
- Cook extra food and freeze it for another day.
- If the person you're caring for was the main cook, ask them for recipes.
- Make meals a time when you can sit together and talk.
- If the person you care for is losing weight, talk to your doctor, dietitian or pharmacist about digestive aids or dietary supplements.
- Take extra care when preparing food because cancer and its treatment weaken the body's immune system. Always wash your hands before preparing food and take special care when handling raw meat, fish and chicken.
- Store ready-made supermarket meals in the freezer.
- If the person is nauseous due to radiotherapy or chemotherapy, ask the health care team if they can prescribe medication.
- Ask to try different nausea medication until you find one that works well for you. Nausea and poor appetite can last for several months after treatment has finished.
- Offer the person's favourite or well-tolerated foods often.
Paperwork can pile up. You may have to keep track of bills, receipts and letters from health professionals. It's easier if you have them all in one place such as a folder, expanding file or filing cabinet. Although it might take a bit of effort and time to set up initially, carers who have an organised system say it is worth the effort.
- Try to create a support network of volunteer and paid carers, service providers, relatives and friends to regularly visit the patient. These people should be reliable in case of an accident or emergency.
- Create a contact list of the health professionals who are looking after the person with cancer, and keep this list handy in case you need to contact them.
- Use technology (such as email, blogging, text messaging and video conferencing) to stay in touch.
- Ask the person if their doctor will allow them to record consultations, so you can hear what was discussed.
- Look at the best possible telephone (landline and/or mobile) plan to reduce your costs.
- If you visit the person with cancer to take care of them, try to have a rest when you return home.