Getting started

Here are some helpful tips for managing medications and keeping track of changes in your loved one’s health, as well as practical advice to help you keep organised.

Contact list

Keep a list of important contacts in a place you can find easily in case of an emergency. Make sure to check with your GP or palliative care team who you can call if you need some advice or help:

After Hours Contacts (example list)

  1. palliative care hospice on call phone service ph: ________
  2. after hours GP service ph: ________
  3. local hospital (to access the on call palliative care nurse or doctor) ph: ________
  4. ambulance ph: 000

Advanced Care Planning

“ACP is a process of reflection, discussion and communication that enables a person to plan for their future medical treatment and other care, for a time when they are not competent to make, or communicate, decisions for themselves…

Although often about end-of-life care (the last 12 months) or terminal care (the last days to weeks of life), ACP is a process that all patients, and especially those who are at risk of deterioration in health, can benefit from…

ACP will often lead to the completion of an Advance Care Directive (ACD). An Advance Care Directive is a written document, intended to apply to future periods of impaired decision-making capacity, which provides a legal means for a competent adult to instruct a Substitute Decision Maker and/or to record preferences for future health and personal care.”

RACGP statement on advanced care planning 2012

 

Think about advanced care planning as early as possible. This can help avoid complications later one when your loved one may not be able to make medical decisions for themselves. Having their wishes clearly stated in writing can also prevent complications with well-meaning friends and family who may have other ideas about how your loved one should be managed in the last stages of their life. Your GP and palliative care team can help you with this. See the common questions page for details. Make sure you have a number of copies.

Resuscitation preference

If your loved one does not wish to be resuscitated but wants good comfort care instead, then think about asking you GP or palliative care doctor for a letter you can keep in an easy to access place. Have a couple of copies of this also.

Medical Diary

Have a note book that you can carry with you to keep a record of medical appointments. Use another notebook to record changes to medications that your GP, oncologist, or palliative care doctor have made.

For example:

Monday 24/5/12   
Home visit from palliative care team.
Fentanyl (Durogesic) patch increased from “25” to “50”
Clonazepam drops started. 1 drop morning and night.

Medication List

Keep a list of medications where you write down the “generic” drug name (like “haloperidol”) and the “brand” name (serenace), as well as instructions for use. To save time, ask your local GP or pharmacist to PRINT ONE FOR YOU. This has a double benefit of making sure that they are up to date with medication changes. Here is an example medication list.

Recording use of medications

Keep a chart on paper or on the computer listing the date and times medications are given. This is especially important for “as needed” medications such as pain relief. If you have a record of medications, then your GP or palliative care team can quickly and easily review how things are going. Here is an example you might like to follow:

Example home medication chart

Managing time

It can be easy to feel overwhelmed by trying to keep in touch with family and friends. It is understandable that people like to know how things are going, but these days, many people have friends and family in many different states of Australia and overseas. Think about sending out a monthly newsletter to family and friends. You could add a list at the bottom of odd jobs you might need help with. You could also suggest “visiting times” that suit you and your loved one.

Prioritise jobs and don’t feel bad if there are things you are unable to complete.

Don’t feel bad about accepting offers of help.

Take your phone or lap top with you to medical appointments, as well as spare change for parking, a comfortable cushion, and a good book if you might have a long wait. That way you can do some work, write a letter, or check emails in the time you are waiting.

Remember that medical home visits can sometimes be cancelled at short notice, or may have to be rescheduled if there is an emergency. Keep this in mind and have a back up plan for what you can do with your time.

And most importantly, make sure you are getting a good sleep and some time to yourself. This will help you manage everything else (let alone you emotions) much more efficiently.

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