Jess and her mum Janice HERO

Me, my mum and frontotemporal dementia

When Jess’s mum, Janice, was diagnosed with frontotemporal dementia (FTD), Jess struggled to find more information about the disease. Having found support through Alzheimer's Society and others, she hopes her blog about FTD can help people in her position.

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.

Jess and her mum Janice 2

Jess with her mum, Janice

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 a 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. 

Jess and her mum Janice 3

Janice was diagnosed with frontotemporal dementia aged 62

Finding support

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

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

Jess and her mum Janice 4

Jess hopes her blog will help others affected by dementia

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.

Read more dementia stories

Sharing stories about dementia can be a source of comfort for both readers and the writer. Read more dementia stories and find out how to share your own.

Read more stories Share your story

20 comments

Add a comment

My 68 yr old husband of 44 years also has FTD. type dementia, though his brain scans were inconclusive .He was finally diagnosed 3 years ago, but there had been many signs long before that. He is such a lovely man, and so articulate, but now he can hardly speak, and his agitation means that many care homes can’t “cater for his needs.” At present he is in an assessment unit in hospital. I dearly would like to care for him at home, but it has now gone past that stage, and that makes for feelings of guilt. A horrible disease in someone who never had a day’s illness in his life. Many people, I think, think of dementia as loss of memory, but some of the rarer ones are far more cruel.

This is helpful
2

Morning all,
Carers of people with FTD may find these short film clips useful. They were put together by Stockport Older People Mental Health Team and FTD carer group earlier this year.
www.penninecare.nhs.uk/infoforcarers

This is helpful
0

Hi from the other side of the world NZ. I to have found it difficult grieving for someone who is still part of you. I think lack of communication is the hardest to bear. I am lucky that my wife of 54 Years is still able to go walking and appreciate the beautiful things around her. Keep positive and live for each day

This is helpful
1

My mum had FTD started when she was 60, passed at 72. It was heart breaking not being able for her to talk back. It's worrying that a couple of ppl have said it's generic 50/50 who has told you this? Heart goes out to you xx

This is helpful
0

Hi Julie,
Although this may sadly be the case for some people, it's not true in all cases of FTD.
We have more information on our page, 'Is dementia hereditary?' which you may find helpful:
https://www.alzheimers.org.uk/about-dementia/risk-factors-and-preventio…
If you're all worried or would like to speak to somebody, our Dementia Connect support line can give information, advice and support. More details (including opening hours) are available here: https://www.alzheimers.org.uk/get-support/national-dementia-helpline
Hope this is helpful,
Alzheimer's Society blog team

This is helpful
0

Hi,
I can feel your pain. Recently my mother diagnosed with Alzheimer’s and it shattered the whole family. Being from a small village in India, it is more difficult . People ridicule. They think it is some kind of black magic. She is also around 65. The best moments of the past with her hurt us a lot. I wish there was a medicine for Dementia.

This is helpful
0

Hi ime in a simular position as you. My wife, Also Janice was diagnosed with FTD 4 years ago but as you we suspected all wasn't well for a couple of years before. She was treated for anxiety for 3 years prior to that. I can understand totally how you feel because all you want to do is help her and love and hold her but now my wife can't understand my reasons. She has cared for the public a large part of adult life but this horrible illness has taken her away from me. Like you my wife has reac a terrible stager of her illness and it really does drain you in body and mind. One thing is sure though with lots of help from our brilliant families and friends I can give my wife all I have. Its going to be very hard but ill get there and so will you. God bless

This is helpful
2

im so sorry to hear about your mum it's a horrible disease and one that some times we don't understand my dad had dementia it came on so quick and its so hard for the family take care

This is helpful
1

Ive been in exactly the same position as you.. My m was also diagnosed with FTD at 62 but had showed signs for a few years before. Its an incredibly painful experience. During the past year my Dad who was her carer was diagnosed with lung cancer and died 9 months later. So I totally understand your grief, I grieve for one parent living the other who died... Both aged 65. We need more research into FTD and available resources. I wish you well and thank you for your blog.

This is helpful
1

Very touching story and with many similarities to mine and my mum's......
I live in Greece but technology can bring us closer....
I'd like to share my experience with you....
God bless you!

This is helpful
1

My mum was in her late 50s when diagnosed, what a shock as it was treated as depression for years.

This is helpful
1

My mum had FTD for 12 years diagnosed at the age of 54. It finally took her from us completely a few months ago. If you want to talk feel free to make contact.

This is helpful
1

I forgot to mention she was also called Janice! X

This is helpful
0

Hi Jess reading your blog reflects my life. I was 28 (now 41!) when my mum aged 50 was diagnosed with Picks disease. She sadly passed away aged 63 in March. I have had lots of support from friends which has really helped but no one truly understands the feelings and emotions you go through on this difficult journey. Spend as much time as possible with her 🥰

This is helpful
1

My beautiful mum was diagnosed with FTD last year It’s taken her so quickly. I’d love to be in contact with Jess.

This is helpful
2

Hi Jess, I’m in exactly the same boat as you, my Dad had FTD and I also have a 50% chance of having the gene that will mean I will get it too. It’s a long, tough old road isn’t it. Thank you for sharing your story!

This is helpful
2
Leave a comment

Your email address will not be published. Required fields are marked with *

The content of this field is kept private and will not be shown publicly.