New here - hello

[michaelhamilton]

71 year young sole carer for 58 year old wife diagnosed mid 2006 with a rare dementia - FTD (Fronto-temporal dementia or fronto-temporal lobar dementia) aka Pick's Disease - by MRI scan and blood tests at Dept of Clinical Neurosciences in Edinburgh (she has significant frontal and temporal lobar atrophy).

Also a member of FTD Support Forum based in US but with UK members - was a Moderator until recently when wife's deterioration made it too time consuming to do properly.

Most FTD seems to hit earlier than Az and seems to progress more rapidly with mean duration from onset to death of six years.

Many patients become care-dependent early on and become helpless until persistent vegetative state: death is usually from accident, uncontrollable infection or choking on food as swallowing reflex fails.

The "good" side is that it is not physically painful and there is no radical surgery, chemotherapy or radiotherapy so there are worse hands that are dealt.

Cheery wave at 5 am from Michael.

 

[jenniferpa]

Hi Michael and welcome to Talking Point.

There are, sadly, quite a few people here 1) taking care of loved ones with FTD and 2) taking care of early onset dementia sufferers.

Any questions: just ask.

Regards

 

[Skye]

Hi Michael

My husband has a form of FTD, not Picks but PPA (primary progressive aphasia).

He was diagnosed in 2000 at the age of 66, and was very well, apart from the loss of language, until last year, when UTI floored him. He's been in an EMI unit since then -- immobile, no balance, doubly incontinent and no speech. But absolutely no behavioural problems or change in personality.

I consider we've been lucky compared with some, though I'm still angry at the trauma of last year.

 

[Helen33]

Dear Michael

I am the sole carer of my husband who has FTD. He is 78 and I was shocked to read he might be dead in 6 years. Our consultant said that FTD wouldn't affect his longevity.

I think I am one of those people that cannot face the horrors that the future might hold and prefer to deal with things one day at a time.

Anyway welcome to Talking Point .

 

[Grannie G]

WE do have a member whose husband has had FTD for over 15 years, so there is always the exception to the rule.
And really I doubt there are any rules for any forms of dementia. So much depends on other factors.

 

[Skye]

I was shocked to read he might be dead in 6 years. Our consultant said that FTD wouldn't affect his longevity.

Helen, we might all be dead in six years!

The truth is, where dementia is concerned, there are no rules.

I thought I was losing John last year. Now, I too take each day as it comes.

 

[Helen33]

Dear Sylvia and Hazel

Thanks. I suddenly reeled at reading such a blunt statement and even felt a bit of a panic (not like me). I appreciate you being there.

Love

 

[michaelhamilton]

The "mean" duration for FTD (Pick's Disease) from onset to death is six years. Sadly some die within a year (accidents usually) and others live FAR longer than six years. The mathematical difference between "mean" and "average" is complicated and irrelevant. Mary and I are aiming at 20 years for her and 7 years for me so that we arrive at the Pearly Gates simultaneously.

 

[michaelhamilton]

Hi Michael and welcome to Talking Point.

There are, sadly, quite a few people here 1) taking care of loved ones with FTD and 2) taking care of early onset dementia sufferers.

Any questions: just ask.

Regards

Dear Jennifer, Thanks for your kind welcome. Best regards, Michael

 

[makalu]

Scary

For those that left behind its scarey and horrific to hear this, but what on earth do those that are suffering feel?
every day i feel that i want to scream and scream and I feel such anger and frustration for my poor dad - then I remember someone relies on my for everything and i need to be strong for her, my little 5 month old baby and that gets me through the day and gives me the strength to carry on and see dad every day.
Be strong everyone.

 

[maddie5177]

[QUOTE
every day i feel that i want to scream and scream and I feel such anger and frustration for my poor dad - then I remember someone relies on my for everything and i need to be strong for her, my little 5 month old baby and that gets me through the day and gives me the strength to carry on and see dad every day.
Be strong everyone.[/QUOTE]

me too... instead of dad it's my mum and instead of a 5 month baby, i have a 6 month baby, and like you she gets me through each day, keep holding on

love n hugs maddie xx

 

[lesmisralbles]

Many patients become care-dependent early on and become helpless until persistent vegetative state: death is usually from accident, uncontrollable infection or choking on food as swallowing reflex fails.

The "good" side is that it is not physically painful and there is no radical surgery, chemotherapy or radiotherapy so there are worse hands that are dealt.

Cheery wave at 5 am from Michael.


I am biting my tongue.
I mean I rearly am.
Barb & Ron

 

[connie]

The "good" side is that it is not physically painful and there is no radical surgery, chemotherapy or radiotherapy so there are worse hands that are dealt.

As I tried to untangle Lionel's (67) legs tonight, and he winced at every touch I would question your words -The "good" side is that it is not physically painful .

The truth is we do not know.

I can only agree that we deal with the hands that are dealt to us. Wish that it were not so. My heart is very heavy.

 

[twinone]

The truth is we do not know.

I can only agree that we deal with the hands that are dealt to us. Wish that it were not so. My heart is very heavy.[/QUOTE]


I do not think there can be anything worse than this illness, I know there are other terrible illnesses with alot of side effects to the treatments but at least the person can communicate and tell people they are in pain.

I know Steve suffered, he could not explain properly but it was not easy,for him or me. Its an awful way for someone to end their life.

Only my opinion.

Love Janet