Keep a calendar specifically for appointments, and to jot down responses to medication, and changes to wellbeing. It will help you to remember the sequence of events, and see patterns as they emerge. It is good to be able to anticipate that some responses e.g. to chemotherapy, are part of a somewhat predictable cycle.
The patient may be seen by a number of different medical professionals. It can be helpful to keep a record of who the patient sees, when and what for. Ask for a card from each one so you know how to contact them. Determine who is the most significant person in this network who can to help you to make decisions relating to ongoing care.
It may be hard to take in everything you are told. Take a notebook with you with questions or concerns, and to write down new information.
Keep a record of all medications the patient is taking: name of product, dosage and how often.
Keep a record of the patient’s Medicare details, private health or ambulance insurance, and any concession cards. You will be asked for this information many times.
Know who to contact in an emergency – keep contact details where you can find them in a hurry.
Keep an overnight bag packed for the patient for emergencies. Have your own bag ready to go – wipes, tissues, toiletries, your own medication, a change of clothing including extra layers etc.
Encourage visitors to phone beforehand to check how the patient is feeling, and to avoid disturbing daytime sleep Don’t be afraid to suggest a short visit only, or to give a time frame so that the patient doesn’t get overtired. Some days he or she may be happy to have visitors, but at other times may not feel up to it. Remember that the patient may not want to talk about illness all the time.
Your friends may not know what to say to you. They want to help but don’t know how. Don’t refuse genuine offers of help if it supports you in your role as carer. Be prepared to say what would be helpful. Help with the day to day things – just being available.
Be kind to yourself. Try to get some exercise – this will increase your energy levels. Ask a friend or family member to sit with the patient while you have a brief respite. Don’t feel guilty about asking for help – it’s good for your physical and emotional health to take a short break every now and then.
If the patient has mesothelioma, it is helpful to contact palliative care sooner rather than later to help organise and coordinate the health care support needed. Palliative care is not just for the end stage - the aim is to provide the best possible symptom control and improve quality of life. Becoming familiar with the services available can reassure you that you know the support is there for both you and your loved one when you need it. It may also enable you to continue care in the home environment, if that is your preference. Once you link with your local palliative care team, it will make it easier to continue their support if hospitalisation is needed.
Above all, make the most of your time together and try to make some happy memories. The closeness and support you provide during this time will be greatly valued, knowing that you really care.
