Helpline: Advocating for your loved one’s care needs - podcast episode cover

Helpline: Advocating for your loved one’s care needs

Jun 16, 20256 minSeason 2Ep. 4
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Episode description

Caring for someone with dementia means you’re constantly learning—how to navigate healthcare, manage family dynamics and balance work with caregiving. You quickly become an expert in so many areas, often without realising it. 

But how do you share that wisdom with others? And what happens to all that knowledge once your loved one passes? 

Sharing your experiences with other carers can be incredibly valuable, not just for them but for you as well. It helps you to connect with others and can give you a renewed sense of purpose. 

If you’d like personalised advice on how to connect with other carers, you can contact the National Dementia Helpline on 1800 100 500. You can call 24 hours a day, or request a callback, start a webchat or send an email with whatever is on your mind. 

You can also listen to this episode of Hold the Moment to hear more stories of how other carers are sharing their knowledge. 

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Hold the Moment is a podcast from Dementia Australia, produced by Deadset Studios.  

Follow Dementia Australia on Facebook and Instagram or find support resources on our website. 

This episode was hosted by Jim Rogers and Kristin, a National Dementia Helpline Advisor. It was produced by Luci McAfee. Executive producers are Gia Moylan and Kellie Riordan. 

The National Dementia Helpline is funded by the Australian Government.   

Dementia Australia and Deadset Studios acknowledge the Traditional Owners of Country throughout Australia and recognise their continuing connection to lands, waters and communities. We pay our respect to their Elders past and present, and extend that respect to all Aboriginal and Torres Strait Islander peoples today. 

Dementia Australia acknowledges and appreciates the support of the Australian Government for this initiative. 

 

Transcript

- When you are new to caring, you're constantly learning and adapting. Every new experience or resource adds to your grown wealth of knowledge. So why not share it with others? Hi, I'm Jim Rogers, and this is Hold The Moment. A podcast by people living with dementia and their families. Reaching out to other carers to share your experience and wisdom, is not only helpful to them, but can also give you a sense of connection and purpose.

Especially, if the loved one you were caring for, has now passed away. In this bonus episode, Kristen, from the National Dementia Helpline, gives you some great tips on sharing the knowledge you've gained along the way. As well as advocating for your loved one's cultural needs. [Music] - One of the things that you might find as a carer, is that you need to provide information and advocate for your loved one living with dementia so that they are able to access the things that they need.

For example, you might find that you need to explain certain cultural practises, spiritual practises, so that your loved one living with dementia is able to continue with those. You might also find that if your loved one living with dementia, has a history of trauma, that you need to explain what that means for them, in terms of other people helping with their care. Always being the person to provide information and education, can be exhausting.

So keep that in mind as you go about your caring role. [Music] It seems obvious to say that every person living with dementia is different, but it's true. And in your caring role, you will become a bit of an expert in all the ways that the person that you love, does best. As you find these things that are helpful to care for your loved one, you'll be able to look at ways to individualise things, and this is really important.

What you might find is that when someone gets anxious, taking them outside where they can touch the grass or see the birds instantly calms them down. And that's great information to share with others. For other people, being outside is too much. And finding a cosy spot inside with a blanket and a cup of tea, is exactly what they need. Because you're the person that knows your loved one so well, it can sometimes feel overwhelming to take a break. But think about all the things that you know.

You can write those things down and you can share them with someone else who can come and do their very best to give as close to the loving support that you give. [Music] One tip that you might find helpful, if your loved one is in respite or in residential care more permanently. Is to write down some of the key things and hang them up like posters. So one of the things that you could do is hang up a poster that says, "I love dogs." "Ask me about Shadow."

And that way, if someone that doesn't know your loved one as well or is a new person in their life, it's a way that they can find something meaningful to connect with your loved one right away. Or another poster might say, "This is how you can say hello to me in my language." And that might be a really comfortable way for someone to feel safe and heard and accepted. [Music] If it would be helpful to have a resource that you could share with others, Dementia Australia is a great place to look.

We have webinars on supporting people from culturally and linguistically diverse backgrounds. And also a webinar on supporting someone living with dementia who has experienced childhood trauma. Some of the things that we might be able to connect you to, are a support group in a specific language that might be accessible for you. As well as social activity, or day respite options for people that speak different languages.

In addition, there's a wonderful website that I always like to direct people to, and that's called 'Caring for Spirit.' Caring for Spirit is a great resource. If you're Aboriginal or Torres Strait Islander. Check it out. [Music] [Music] - If you've got any questions about anything you've heard on this episode. Just contact the National Dementia Helpline on 1800 100 500. Their trained advisors are available 24 hours a day. Every day of the year.

And don't forget to listen to all of the episodes of this Hold the Moment podcast. It's available on the Dementia Australia website. Or, any podcast app. [Music]

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