1. Prepare to Care
Topic 2 of 4
It takes a village
As a carer, a lot will change in your life, and you could start to feel alone in the world. What’s important to know is that everyone who interacts with your elder is a piece of a puzzle that can come together as a team to support your elder – and you.
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It takes a village to raise a child and it also takes a village to make sure your elder reaches safe harbor at the end of their lives. You need a team to support your elder. You can’t do it on your own. The team needs to be gathered and organized. The team gets bigger as your loved ones needs increase.
The team needs a leader, you to coordinate all the services and support
Being an advocate
Understanding your responsibilities will help you manage and provide the best care possible. Without an advocate, our elders may not be able to put in place the services they need, understand complex bureaucracies, or to make themselves seen or heard. You may not think of yourself as an advocate, but you may find that you meet the selection criteria for the job.
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Your elders need a trusted, kind and capable person to support them as individuals, to represent their needs, wishes and rights, and when necessary to speak on their behalf – or an Advocate. That is you. You are your loved ones’ most valuable asset. They need you to coordinate and organise their care services, to communicate, to see, to hear, to be seen and to be heard.
As an advocate, one of your most useful tools is a notebook. Unless you have total recall you will not remember everything. A notebook is essential as a diary and a record of everything that is happening including conversations, medications, home maintenance, health and wellbeing, services, and a to-do list. It contains all the information that you need and importantly, that others will need too.
We will go into greater detail in the next section.
As an advocate, you may need to ensure that the support team around your loved one is listening to your elder in a respectful way and that your elder is at the centre of all conversations about them.
Most people find it frustrating and upsetting when people talk about them as if they are not there – elders are no different. For the conversation to be meaningful, the team need to be aware of any communication needs – can your elder hear them? Make sure the team change their communication to suit – slow down, speak up, keep it simple but don’t treat them as if they are simple.
Make sure the team listen and offer the same choices that you would be offered in the same situation. As an advocate, your role is to help the team treat your elders in the way they wish to be treated: state the ‘rules of engagement’ – speaking clearly to your elder, asking them the questions and answering their questions in a way that is understandable.
In case of emergency or maybe just when you want a bit of a break, you will need a wing person. Someone who has your back when you can’t be there and who knows your loved ones and cares about them and is also familiar with their needs.
That person is often hard to find but they are essential. They may be another family member or a support worker who has a particularly strong connection with your elders.
The wing person needs to be there when you need them, fill in as an advocate, know almost everything you know, and be kind and empathetic to your elders.
Your role is not easy, so make sure you look after yourself, call Carer Gateway for support, and take breaks when you need to.
Call Carer Gateway to get some help on 1800 422 737 (Press 1 at the menu).
The notebook
Having a notebook is your essential tool. It is number one in your survival kit, after coffee. Your notebook will help you stay on top of everything that needs to be done. If you are going for the traditional pen and paper, the notebook needs to be large. Or you might prefer an electronic notebook on a smartphone or tablet. Whatever makes you feel at ease and is convenient for you.
Let’s take a look at some headings that may help to organise your notebook.
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Record phone numbers of all the people who are important to the support of you and your loved ones. Team members, family, home care providers, doctors, neighbours – whoever is part of the Village.
Keep records of the conversations you have with medical professionals, the team, your elders, Centrelink or My Aged Care.
Write down who, when, and what was said. If you get a reference number from Centrelink or My Aged Care write it down where you can easily find it again.
Make note of any incidents, accidents and when your elders aren’t feeling well. Keep an eye on their appetite and their medications. Write down anything that others should know, or you need to remember.
Start another notebook and make sure that care workers write down when they came and what they did and how your elders were.
Keep copies of all paperwork – on paper, on your phone or computer such as: identification for Medicare, DVA, My Aged Care, Centrelink, licence, birth certificate and passport.
Keep copies of Enduring Guardianship or Powers of Attorney, funeral plans and Advance Care Directive.
Have details on hand of health insurance, medications, Medicare, cards for hearing screening and hearing aids (they need replacement batteries) and Advanced Care Directive.
You may also need an Emergency Kit. This can include spare keys, emergency numbers, usernames and passwords and important certified papers.
Go to the resources section of the menu for a copy of the Care2Plan Carer’s Planning Guide and see Emergency Care Plan on page 69.
MODULE 1
