Me, my mum and frontotemporal dementia

My name is Jess. I’m 28 years old and live with my husband, Gregg, and I have two lovely step-kids aged 11 and 12.

We have a very large family, good jobs and a whole bunch of funny, talented and caring friends. All in all, I love my life and can’t complain.

But life isn't perfect. Last year my mum was diagnosed with a form of dementia called frontotemporal dementia, also known as FTD. She was just 62 years-old.

Understanding FTD

The main problem I’ve faced is that there isn’t a great deal of resources available specifically about FTD and I’ve found it difficult to speak to people in a similar situation to mum and me.

FTD causes problems with behaviour and language and affects the front and sides of the brain (the frontal and temporal lobes). 

'My mum was only 62 when she received her diagnosis, though her symptoms started much earlier.'

By the time she received her diagnosis (it was a very lengthy process), she was already pretty advanced.

The diagnosis didn’t come as a shock to me. My friends and colleagues always joke that I should join the FBI due to my research skills and in this situation, my skills shone through. 

The one thing the diagnosis did provide me with, however, was relief. I was utterly convinced for so long that mum was living with FTD, even when others doubted me.

We finally had an FTD diagnosis, a reason behind my mum’s concerning behaviour and something for me to focus on. 

I struggled to find online support. Why did mum have different symptoms to everyone else, such as losing the ability to talk? I didn't have a clue what I was doing, I felt truly alone. Although I had family around me, they were also struggling. 

Finding support for mum's FTD

This all changed when I came across an interview on This Morning with a woman, Hannah, who was raising awareness of FTD after her father had been diagnosed. 

It was such a sad story, but it was also the first time I felt I could reach out to someone who would understand. I messaged Hannah on Facebook asking for help.

To my surprise, she replied with the best response ever. She gave me guidance, she provided me with useful resources, but most importantly, she understood. She could relate with me and knew exactly what I was going through. 

'I’ve also received huge support from Alzheimer's Society, and I’ve been given all the support and advice I need.'

At one point, I turned up to a local Alzheimer’s Society office in floods of tears just looking for someone to speak to. One of the dementia advisers invited me in for a cup of tea and provided me with reassurance and support. I’ll never forget that.

Helping others affected by FTD

After speaking to Hannah, I decided to start my own blog about mine and mum’s FTD journey. Since the diagnosis, I’ve found out that mum’s FTD is a genetic condition and there’s a 50/50 chance I’ll also get the disease.

I decided a blog would probably achieve two things; the first being therapy for me, and the second being a place where people could visit, relate and understand FTD.

'In my blog, I’m completely honest.'

I go into every bit of detail including when I started spotting changes in mum and the process of getting her diagnosis. 

Mum is really advanced now and the journey my family has been on so far hasn’t been easy. I'm in a situation currently where I’m grieving for my mum, even though she’s still alive. 

Mum doesn't speak anymore, and I don’t think she even knows who I am. Her progression has been incredibly quick. Her level of care required now is huge but despite all of this, I do still manage to enjoy my time with her.

I have found myself feeling incredibly anxious and I feel so much better after putting my feelings into words. My blog is like my therapy and I’m taking others on this journey with me and hopefully helping them along their way too.