Small life update

Aoife O'Neill · 2020/06/22 · 3 minute read

Over the last year or so I’ve observed subtle changes to my dad’s personality. My mum had noticed even larger changes, and also that he was at times behaving a little oddly. I’d originally put it down to his becoming more eccentric with age, as happened to my paternal grandfather, who went from a very stern man to someone who would chase us round the room pretending to be a rabid dog.

Unfortunately, it’s looking like these changes are potentially more sinister and the doctors believe my dad has a problem with his brain in the frontal lobe. This could be any number of things from a tumour, mini strokes in this area but what it is most sounds like is frontotemporal dementia.

When my mum rang me last Tuesday and described his symptoms and test results, my partner (a doctor) mentioned this type of dementia before I’d even gotten there. It still could be these other, more benign or treatable issues, but his symptoms very much fit with this type of dementia.

Now we need to wait 4-6 weeks for his brain scan to find out more, but it’s likely the diagnosis journey will be far longer as this is a huge diagnosis to make with the average life expectancy 6-8 years. For now, we must endure the wait although there’s already been many tears as we all come to terms with what this means.

This type of dementia is known to affect people’s personality, and it slowly changes them over time until they can no longer be left alone and need continuous 1-1 care as they stop following social norms and beyond. It can be hard to remember what their personality was before the disease, and families report reflecting on memories to try to determine when the symptoms first start to show.

This isn’t the first time I’ve had to consider a parent being terminally ill, with my mum being diagnosed with leukaemia when I was 17. Fortunately, she was eventually diagnosed with a form called chronic myloid leukaemia, for which treatment was invented around 15 years ago. This experience taught me that it’s really hard to break the news over and over again and that sometimes people react really inappropriately, and it can change how you view them. Hence why I’m choosing to break the news here.

Until we know more about what’s going on, I’m in this weird limbo state where at times I’m desperately sad that my wonderful dad might be dying and others where I’m determined stay busy and enjoy all the really lovely things happening in my life. For now, my plan is to be as open as possible about this so that I can take time out when I need to but that I want my life to carry on as normal.

I’m happy to talk about this with people. Equally, no pressure at all to mention it to me! Also, don’t ever worry about upsetting me by bringing it up, I’ll always appreciate it when done sensitively. I’m not very good at being sad around people, so it’s likely most people won’t notice any difference in my behaviour.

There’s a chance I’m sharing this all and it will turn out its something quite minor, but I think it’s important I tell people what is currently going on in my life. It doesn’t change me as a person, but my default is to present a happy and optimistic outlook and for people not to be given any clues that I have something quite sad happening behind the scenes. I’m still a happy, optimistic person but there will be a part of my brain worrying about my dad.