will dementia kill my mum?

[miffygirl]

Hi,
My mum was diagnosed with frontal temporal dementia 2 years ago, aged 60. Since then, she has gone downhill pretty quickly. I was with her when she was diagnosed and spoke to the consultant about her prognosis, but since then haven't really had anyone to talk to about what will happen to her. Will the dementia eventually kill her? I'm not meaning to be morbid, just want to try and prepare myself for what may be to come. I can't seem to be able to find a straight answer anywhere.
Thanks

 

[Bodensee]

Hi,
My mum was diagnosed with frontal temporal dementia 2 years ago, aged 60. Since then, she has gone downhill pretty quickly. I was with her when she was diagnosed and spoke to the consultant about her prognosis, but since then haven't really had anyone to talk to about what will happen to her. Will the dementia eventually kill her? I'm not meaning to be morbid, just want to try and prepare myself for what may be to come. I can't seem to be able to find a straight answer anywhere.
Thanks

As far as I am aware there is nor cure as such for dementia, but there are research trials going on and your mother certainly should qualify, have a look at the raising awareness section on here and the thread all about the new vaccine for people like your mum which is being trialled in the UK. You may have to do a bit of research yourself as your mother's GP/Neurologist might not be upto date on these things, also as she is so young have the consultants ruled out prion disease?

 

[SWMBO1950]

Hi Miffygirl

Dementia is now classified as a terminal illness but does not normally affect people in the same way as say cancer.

The body gradually shuts down make the person less and less able.

Please do not fret about this as you will find much help and back up from the lovely people here.

I am sure others will be along with something more definitive than I have written.

In the meantime Best Wishes x

 

[nmintueo]

"Will the dementia eventually kill her?" -- I think the answer is yes, but nobody knows when. Your consultant may be able to offer a prognosis but I'd guess there may be a great deal of statistical uncertainty on any estimated life expectancy.

Frontotemporal lobe dementia (FTD), like all dementing illnesses, shortens life expectancy. The exact influence on mortality is unknown, and the rate of disease progression is variable.

http://emedicine.medscape.com/article/1135164-overview#aw2aab6b6

The course of FTLD is one of inevitable progressive deterioration. From the onset of the disease, life expectancy is two to fifteen years, with an average of six to twelve years. Death usually comes from another illness such as infection.

http://www.fightdementia.org.au/understanding-dementia/fronto-temporal-lobar-degeneration.aspx

 

[greengirl]

Hi,
My mum was diagnosed with frontal temporal dementia 2 years ago, aged 60. Since then, she has gone downhill pretty quickly. I was with her when she was diagnosed and spoke to the consultant about her prognosis, but since then haven't really had anyone to talk to about what will happen to her. Will the dementia eventually kill her? I'm not meaning to be morbid, just want to try and prepare myself for what may be to come. I can't seem to be able to find a straight answer anywhere.
Thanks

v
It is difficult to get straight answers because it is difficult for Dr's to predict. She is quite young and perhaps because that is 'atypical' the consultant may have an idea about whether the deterioration will continue to be fast. How often does your mum see a specialist? is she living independently? How able/ aware is your mum? Would she mind you talking to the consultant for advice? If you need to make plans for the future such as finding money for care, it is not unreasonable to ask these questions. Emotionally I do not think you can ever really be prepared for the death of a parent, or anyone..

If she has no other health problems it may be dementia that kills her, but just as most of us don't know what will carry us off, it could be any number of things not connected to the dementia.
gg

 

[miffygirl]

thanks for all your answers. It's just so scary. Within 2 years she has had to give up work, and is now living in a care home. Her sister has taken over a lot of the medical side of her care and I just don't know who to ask to get straight answers. she seems to be going downhill so quickly, and I don't know how I can help her.

 

[greengirl]

Perhaps your aunt is trying to protect you, or doesn't realise how much you need to feel on top of the situation. Can you talk to her?

You are helping your mum by being there and being a loving daughter. You are helpless in many ways but although she may not be able to say it having you care for her and visit and do nice things for and with her then you are doing the most important job.
x g

 

[Countryboy]

reply

Hi I was diagnosed in 1999 with Alzheimer’s aged 57 after PET brain scans in 2003 got a definite diagnoses of sever loss of volume on the frontal temporal-lobes I continued to work for 8 years until my retirement aged 65 the diagnoses didn’t worry me because my dad had Alzheimer’s for over 25 years and died of cancer aged 86 also my mum had Alzheimer’s for several years and she died with bowel cancer aged 94 although she live next door to us she did live on her own up to a week or so before she passed away, also both mum sister, and brother had Alzheimer’s the sister lived to she was 89 and brother 92 so in all of these cases none of them died from their dementia, as for me well I just accept it and carry on living life to the full

 

[miffygirl]

Perhaps your aunt is trying to protect you, or doesn't realise how much you need to feel on top of the situation. Can you talk to her?

You are helping your mum by being there and being a loving daughter. You are helpless in many ways but although she may not be able to say it having you care for her and visit and do nice things for and with her then you are doing the most important job.
x g

thanks greengirl. I've never really been close to my aunt and she's not that approachable but I will try to talk to her. I just want to do what I can for my mum. It's been really shocking how quickly things have developed, and how quickly she seems to be deteriorating. Every time i see her it seems there's something else she's "lost". All I can do is keep seeing her i suppose. I really appreciate you taking the time to reply to me x

 

[greengirl]

thanks greengirl. I've never really been close to my aunt and she's not that approachable but I will try to talk to her. I just want to do what I can for my mum. It's been really shocking how quickly things have developed, and how quickly she seems to be deteriorating. Every time i see her it seems there's something else she's "lost". All I can do is keep seeing her i suppose. I really appreciate you taking the time to reply to me x

you are very welcome, stay in touch. Sometimes there are things to be 'found' too that are just as unexpected, you will have some nice surprises some days