Fronto Temporal Dementia at 63

[Guinness]

My mum has just been diagnosed with Fronto Temporal Dementia at the age of 63. She had changed a lot over the past couple of years and we all knew that there was a problem but not what it was. Eventually we managed to get our GP to refer her to a specialist for a brain scan and to Addenbrooks for further investigation.
Although mum has had her diagnosis, she still says that she is fine. Her general memory is actually above average, it is just the frontal lobe changing her empathy and behaviour.

My dad is finding it hard to cope with and indeed to be kind as it is frustrating to see you wife of 43 years change so much. He is embarrassed about how she talks to everyone and is so open and just cannot understand it.

Has anyone else been through this and can help in any way? My best friend has changed so much, it is breaking the familys heart.

 

[Countryboy]

Don’t worry and listen to your mum when she says she’s fine, I have had Fronto-Temporal- dementia for almost 14 years had all the PET brain scans ect in 2003 & 04 and my brain works fine the problem is what I’m thinking and then what I actually say can appear to be a bit of a mess which can then results in a bit of swearing,, well a lot of swearing

 

[lin1]

Hello Guinness
Welcome to TP
Am sorry to hear about your Mum.
I know little about FTD, but others here do hopefully they will be along soon

I remember when we first knew mum was ill, it took Dad and I a while to realise that correcting her etc , was having the opposite effect of helping her
In other words, though Dad and I knew Mum was ill, it took us a while accept that it was this vile disease and mum couldn't help or change the way she was being affected

I am going to put a link to an old thread on here that you and dad may find helpful , its called
Compassionate communication with the memory impaired.
though its mainly about people whose memory is affected , it does give some insight which your Dad may find helpful

http://forum.alzheimers.org.uk/show...ionate-Communication-with-the-Memory-Impaired

 

[Guinness]

Thank you for your replies. It seems to affect everyone so differently. Mum can find the words but cannot stop talking! Luckily I have found a fantastic lady locally who is helping with support and advice. Dad is going to get some help too so that is positive.

Thank you Tony, mum is fine most of the time! Thank you Lin for the link.

x

 

[Sue J]

Hi Guiness

Sorry to read about the way your Mum is changing.

I am similarly and am embarrassed by myself often and wonder what is going on. I find myself doing and saying things I wouldn't ever have dreamt of. I try and fight it which not sure if it helps or not and without a diagnosis makes it difficult for everyone to understand.

It's good that you have found someone locally that can give you good support and that your Dad is too. I want my family to get support too as I know how difficult it is to watch in someone. With understanding , suppport and coping mechanisms though can make it an easier road.

Best wishes
Sue

 

[ppjm]

Hello Guiness

My Mum was recently diagnosed with Fronto Temporal Lobe dementia - she is also 63. She had been a bit "odd" for a good while and we eventually got her to go to the doctors. After many tests, she was diagnosed just back in April.

I have just read your post & felt as though I had written it myself. My Step Dad is also struggling to come to terms with Mum's illness and I am so worried as he has very little patience with Mum and quite frankly, is not handling it too well. The problem is that he doesn't like accepting help from anybody - if his leg was dropping off, he wouldn't go to the doctor (honestly). He is becoming ratty with Mum and says she is "batty", "mad" and that "she probably won't even be here this time next year". I may also add at this point that he says all these things in front of her.

My advice to you and your lovely Dad? Stay close as a family and support each other as much as you can. Believe you me, you need each other more than ever now.

It is really tough & quite embarrassing at times - my lovely Mum has changed so much; she no longer shows much emotion, she most certainly speaks her mind (!) and she has become very withdrawn. She is a completely different person to who she was even just several months ago and it's that's a very hard pill to swallow. Her speech is very bad now - she can hardly contruct sentences and it's difficult to have a "normal" conversation with her anymore.

Have you got the ball rolling with the POA, benefits for your Mum, help from Alzheimers etc? I've already been involved in this so please feel free to chat with me.

To be honest, it would just be so lovely to have support from any other carers or sufferers of this terrible type of dementia.

Look after yourself & keep in touch - I would be happy to do so.

Joanne