Kate (59), Steven (63), and their two daughters, Gillian and Stella, have always been close. Now the family has come together to cope with new challenges since Steven’s diagnosis with Frontotemporal Dementia (FTD).
Starts at 60 asked Kate and Gillian a few questions about the support they receive from the Carer Conversations program, a monthly online support group providing a safe space to share and learn from experts and carers of loved ones with FTD.
How did you both become carers for Steven?
Kate: It took a while to work out what was happening to him. We talked to our local GP about Steven’s changing behaviours. We’re grateful that the GP took our concerns seriously from the start. A number of tests later, including a CT scan, showed that Steven had dementia.
Gillian: Stella and I then went from having a father who loved and cared for us to supporting our mum in caring for our dad. It was a hard adjustment at first, but the diagnosis helped us to understand what to expect, what to prepare for.
What have been some of the challenges you’ve faced since the diagnosis?
Kate: I’ve had to learn new skills like mowing the lawn and using a power drill – things that Steven used to do. But the biggest challenge, has been living with someone who now doesn’t communicate the same way.
‘It feels like I’ve lost my lifetime companion.’
Gillian: Moving Mum and Dad from our family home into my grandmother’s place was a challenging time, but it meant Mum would have more company and support, as well as sharing household duties.
How has Carer Conversations helped you to cope?
Kate: I now feel a lot less overwhelmed, and know from hearing other people’s experiences there’s no ‘typical’ progression or timeline. And I’ve stopped comparing Steven’s situation to others.
Being aware there are other people going through the same thing has been so reassuring, giving me the confidence to keep going.
Gillian: Now we feel part of a community who are experiencing a similar situation. We hadn’t heard of FTD before, and didn’t know where to go for help; we felt completely isolated.
Anything else you’d like to share about Carer Conversations?
Kate: The program provides really practical support. We’re now aware of a range of services and resources available that I wouldn’t have otherwise known about. We’ve learned how to navigate the NDIS process for example, and new coping mechanisms for potentially stressful occasions like the festive season.
Gillian: It’s a space where people can share what’s worked for them and what hasn’t, preparing us for what might happen in the future, and to help us deal with what’s going on right now.
‘Honestly, joining the Carer Conversations program has changed everything. It was the first time we felt really heard.’
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