When Irene’s husband Neil was diagnosed with Behavioural Variant Frontotemporal Dementia (bvFTD) he’d just started a new job in the Northern Territory – thousands of kilometres from their home in a Melbourne beachside suburb.
Irene and their daughter Lottie had been concerned about Neil’s changing behaviour for a long time before that.
‘It took two years to receive a proper diagnosis,’ says Irene. ‘Neil was becoming impulsive and obsessive. Our GP did not think that there was anything wrong. And I started to question our observations, thinking it may be an adult manifestation of ADHD.’
Attending Carer Conversations has been validating for Irene, providing a supportive space where she can speak openly about her experience as a carer.
Lottie felt it was important that Irene have her own space to be with other carers going through similar experiences, so she doesn’t attend Carers Conversations herself. Instead, Lottie volunteers with the Australian Frontotemporal Dementia Association (AFTDA) – who partner with Dementia Support Australia to deliver Carers Conversation meetings.
Neither Irene or Lottie are strangers to dementia – Irene, a registered nurse, helped care for her dad who lived with Alzheimer’s disease; Lottie has completed a PhD in childhood dementia and now works in the health industry.
Even with their knowledge, Irene and Lottie found navigating the healthcare system and knowing what supports are available for carers a stressful experience. They were grateful for the practical advice provided at Carer Conversations.
‘It’s also an absolute revelation to be properly heard when I am in these meetings,’ shares Irene. ‘The things I loved about Neil when we were married are disappearing. It’s devastating; the grief is ongoing. I now know there are other people going through a similar sense of loss.’
Lottie adds: ‘Carer Conversations gives Mum a practical lens for us to look through – she has learnt strategies that help her in caring for Dad.’
Irene explains: ‘Carer Conversations has provided specialist education to help me understand how the affected parts of the brain change Neil’s behaviour, which makes me a better carer. For example, Neil has lost a lot of language and finds it difficult to find the correct words. His go-to word is “no” - I now understand that this is the first word he can access quickly, so rather than thinking he is being disagreeable, I ask him if this no means “yes” and give him time to answer.’
As Lottie lives an hour’s drive away, it’s reassuring for her to know that Irene has the resources she needs on those tougher days. For instance, access to FTD-specific education, carers support activities, strategies for self-care and stress management.
The Carer Conversations team encourage self-care activities too, to help balance the responsibility of caring; often participants can have multiple caring roles.
‘I don’t know whether I would have given myself permission to keep going to my yoga class, which I know is really helpful for my wellbeing. I’m a much better person for it, calmer and more patient. We’re encouraged to embrace the opportunities we still have – it can be very easy to get into a negative mindset. Now I am learning how to look at things differently.
‘It’s about focusing on what we can still do – while knowing that each day has its own set of challenges.
‘It’s very important for me, as a carer of my partner with this very challenging condition, to have access to knowledgeable professionals and to be with people who also have a lived experience of caring for loved ones with FTD.
‘I’m very grateful to be a part of Carer Conversations.’