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Terry Pratchett – Living With Alzheimer's

EllieS

Registered User
Aug 23, 2005
170
0
SOMERSET
I only caught the last section of the TP documentary. It was very enlightening to see the scans (frightening too).

But what sticks in my mind is that home he visited - where were all of the patients? Did you see many care staff? Was it really that different from the home where our loved ones are 'living'? I was surprised at how much TP did not see and undestand during his walkabout and chats with staff!

However, it's better for him to have left feeling at ease with the situation I guess - I think he was wearing rose tinted glasses!

Ellie
 

Skye

Registered User
Aug 29, 2006
17,000
0
SW Scotland
They didn't show any of the areas for people with advanced dementia, in fact the only advanced case was the admiral, and even he was not at end-stage.

Quite frankly, I wasn't impressed with the home. It all seemed very enclosed, with no natural daylight, and no communal areas. Even the exercise class was held in a corridor.

I much prefer our light, airy homes.

I also wasn't keen on the idea of residents progressing through five different areas as the disease progressed. The change of setting and staff would be disturbing, and for those still aware, I think it would be quite distressing to know they had progressed to the next level.
 

ulsterbabe

Registered User
Feb 4, 2009
30
0
Co Down, N Ireland
Jus watched the final part of the progamme tonight, TBH i did warm to him a bit more tonight althought im sure the care homes in the US are miles ahead of homes in the UK.

I do still think the documentary that fiona phillips done gives a better understanding and insight into what carers and sufferers of this horrible illness go through, but any publicity is gud publicity and all help in the awareness.

I have to mention the Girl becky who cares for her father hit a heart string with me as it was like watching myself on TV and although I dont like to admit it the comment she made on the train about how long her father has left is something I think about all the time not being selfish for myself but more for watching dad and what hes going through.

All in all i enjoyed the shows and now have a glimmer of hope that a cure is on the horizion, not in time for dad but to prevent future families going through what I have gone through.
 

Brucie

Registered User
Jan 31, 2004
12,413
0
near London
I think the fact that Terry's symptoms show as people do very very early on in their dementia makes it a bit unreal.

Valid, but for many of us, too long ago to remember.

I agree that the most poignant part of both programmes was Becca and her Dad. He encompassed it all yet looked superficially so normal. Nobody with experience of the condition could miss the signs though.
 
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Tender Face

Account Closed
Mar 14, 2006
5,379
0
NW England
What stood out for me was the statement made that "it is an equal opportunities disease" ... that is, anyone can get it and there is no prediction either of who will get it or of the speed of deterioration, but that with people living longer, more will get it.

And in that same 'interview' for me when Terry asked how others might 'prevent' ...... the answer was 'It's just bad luck'.

THAT was powerful.

Karen
 

Brucie

Registered User
Jan 31, 2004
12,413
0
near London
Tender Face said:
And in that same 'interview' for me when Terry asked how others might 'prevent' ...... the answer was 'It's just bad luck'.

Doh! yes of course, that was the other thing that came out.

And somehow I find that more believable than 'bad diet, bad lifestyle'.
 

Margarita

Registered User
Feb 17, 2006
10,824
0
london
And somehow I find that more believable than 'bad diet, bad lifestyle'.

yes, also more believable then generalizing it with “Just down to Old age"

As I know loads of my mother friends who have diabetic are my mother age truing 80 , still do not have VD like my mother did from the age of before 70 .

At lest last night, they explain more about PCT, it still turn into full blow AZ, near the last stages. Make me think then that all Demetria turn to full blow up AZ not matter what the Demetria is called
 
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Mameeskye

Registered User
Aug 9, 2007
1,669
0
56
NZ
I have just watched the 40 minutes I remembered to record.

I think wha hit me was Terry's face when asking would his PCA spread to the other parts of his brain. I could see how that hurt. For now he is himself, although his body doesn't always do what he wants it too, but he has his thoughts and makes sense of them msotly.

I well understand where his PA is coming from. Like those of us who love someone, we know that we have to watch this disease steal away our loved one. The good thing about TP is that he has received his diagnosis early enough that he understands it and because of this has made an effort to publicise. Too often diagnosis occurs when any ability to understnad that diagnosis has already been lost. My mother smiled as she told me she had dementia. She had a name, but not a meaning.

Mameeskye
 

zeh

Registered User
Sep 19, 2008
54
0
I feel one of the most powerful benefits to come from Terry Pratchett's programme is that he is demonstrating how the sufferer is totally aware - at least in the early days - of what is going on. I have lost count of the number of people who have said or implied to me that they assume my husband obviously can't know what's happening. Or those who don't talk to him because they assume he can't understand.

Of course he knows. He knows that he should be able to lay the table when he stands there with the knives and forks in his hand, utterly perplexed. He knows that he should be able to find the bathroom when he goes up and down the stairs in increasing confusion. And he's perfectly aware that he is frightening his children when he cannot remember which is which.

Anything that raises awareness and improves understanding at even a basic level has got to be a good thing.

Zoe
 

Skye

Registered User
Aug 29, 2006
17,000
0
SW Scotland
I do agree, Zoe. It must be so frightening for people who are aware of what is happening to them. Sylvia's husband Dhiren is a case in point. Even at his later stage, he is aware when he doesn't behave as normal, and is upset by it.

TP's face when he saw the scans said it all. I think maybe for the first time he had become aware of what was happening, and what the future holds.

I dread to think how Dhiren would be if he could see his own scans.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
72,394
0
Kent
Dear Zoe

He knows that he should be able to find the bathroom when he goes up and down the stairs in increasing confusion.

My husband lay in bed last night, listening to the radio, while I was on the computer and said,`Can you tell me where the toilet is please?`
He too is fully aware he should know.

Terry Pratchett has a long way to go before he loses insight. I do hope viewers will realize this.
 

KenC

Registered User
Mar 24, 2006
913
0
Co Durham
Helo Again,

I think the most important thing to come out of this, is that Terry Pratchet is a very well known man who writes books,
and just happens to have a form of dementia.

But he has also decided to tell the world what it is like to be diagnosed with something like this, as way of raising awareness, because like it or not, if and when, those of us with the illness stand up and speak about it, no one really takes any noticeunless we are famous.

There are well over 100 variations of this illness and we need to raise awareness, of this in the hope that we can get more research into better treatments and better faster diagnosis methods for the future in all dementia's.

I do think that he has done a wonderful job up to now, but how he manages to cope with his publishing while supporting the Society I really do not know. But I know that like the rest of us he is terrified of the end, although he did not admit it outright.

I was amazed that he, like myself actually calls his disease by its name, although he did say Alzheimers rather than its correct name, however I don't suppose that many have heard of this varaiton of dementia until he told the press about it.


Best Wishes

Ken
 

sumosumo

Registered User
Aug 20, 2008
85
0
Isle of Man
Programme 2 - my opinion

Hi

Yes, TP was definetely easier to warm to this time around. He's doing a great job raising awareness of the existence of dementia (or Alzheimers as he keeps annoyingly saying) but really he is NOT presenting the nitty gritty.

I think a documentary showing Joe Bloggs as the carer is what is needed to raise TRUE awareness. A video diary type thing. The reality? Caring for the loved one (again, an assumption is made that they are a 'loved one'. Not always. I never got on with my mother - she was not a particularly nice person but as I view myself as a humanitarian and the fact that I know she did her best, I deal with this as a duty. (Her other two daughters washed their hands of it easily. I have tried that but cannot). Trying to raise your own family, look after the victim (us or them - that's another debate), hold down a job, be happy!, live, deal with the emotional side, permanent guilt, financial concerns, logistics, insomnia with worry, the worry over whether you youself are going mad!, the frustration of dealing with third parties. You all know the endless list.

It's said this disease is destined to increase in the future - which clearly will happen without a cure or preventative measure then this REAL awareness is what we need.

I do believe Terry is trying to do a good job through his programme but clearly he is NOT one of us and therefore we do not truly relate to him. It's already been said here; how many of our loved ones have a 24/7 carer shadowing us? Can't blame him, I know, but it's not us. Care at that level removes problems immediately and therefore it is not the problem the majority of us are dealing with.

So much of this illness is unpleasant but perhaps by exposing the not-so-pleasant-side a little bit more understanding and empathy may follow and therefore give us hope for the future whilst we try to deal with our ordeals.
 

Countryboy

Registered User
Mar 17, 2005
1,504
0
Cornwall
Terry Pratchetts TV Doc

I watched Terry Pritchett’s documentary and thought his explanation on how he himself was coping with brain problems whether we call it Alzheimer’s or PCA is of no consequence, I have Fronto-temporal dementia although Terrys damage is at the rear of the brain where mine is at the front we both have similar things in common such as his remark spaghetti junction as far as educating the public well take it from me telling friends ect is unwise after having MRI scans and having the diagnoses confirmed one’s personal life begins to change in my case first DVLA without meeting me decides I should only hold a driving licence for 12 months at a time the police fire arms took away my shotgun licence (saying I would be a danger to the public) actually I have never had so much as a parking fine on top of that I was a freemason for 38 years they excluded me from the Lodge the Provincial or Grand Lodges didn’t want to intervene and give any help or support, believe me any type of dementia or brain damage linked with Alzheimer’s once exposed will change your life keep fightingn I say
 

beech mount

Registered User
Sep 1, 2008
1,524
0
Manchester
Watched it,it was good as far as it could be,there are so many types of dementia it is an imposible task to show.
Show it in the end stages and people will run away,untill you live with it,you do not know it, the most telling was his reation
to the scan,but would the person in the street see this?
we can but others,i do not think so.
There are many programs about cancer,but people are not shown screaming in pain.it is dificult to show the reality of any illness and az is one of the hardest to portray.
Watched it with my wife (she no longer thinks she has az)
Later she said "I know you do everything for me,but that is because at the moment i choose to let you"
What could i say?
John.
 

BeccaS

Registered User
Feb 13, 2009
2
0
London
The people he met up with this week again were all very aware & as eloquent as himself. Becky's Dad was obviously quite well down the line. I understand, the family most likely wanted to preserve his dignity so we weren't really shown that. He went for a check up on the progress of the illness, (was it every three months) My dad has been diagnosed with VAD for 17 months no one checks up on him. :(

.

Hi all,

Please bear with me, I have never used one of these forums before so not quite sure whether I'm making this post correctly! My reason for logging on however is because I'm Becca Stevenson who took part in the Terry Pratchett documentary on Wednesday night. I've read several paper reviews but I was keen to gather feedback from the people who really know.

I see that there is a variety of mixed opinions regarding the documentary and this, I feel is a good thing. If nothing else I hope (and already experiencing from personal feedback) that Terry's openess, however it may be received, is bringing dementia into the spotlight, sparking debate and ultimately raising awareness.

Chrissyan, unfortunately as the documentary was focused on Terry the majority of the filming was solely on myself to compensate for Terry's daughter not wanting to be involved. As a family we're very open about Dad (this is what he wished on diagnosis) and know how important it is to show the reality of living with dementia to dispel the many misconceptions surrounding it. The hospital check ups are very fortunate. Dad was diagnosed with Alzheimer's when we were living in Royston, Hertfordshire. During various tests Dad was referred to a research professor at Addenbrookes in Cambridge. Diagnosed with Alzheimer's at only 52 Dad joined the research team and volunteered in various trials. This has meant he has a biannual check up to assess and monitor how the Alzheimer's is progressing. Unfortunately as the advanced stages set in there is little he can contribute to the programme now but thankfully they are still happy to continue with the check ups and report back to our GP with recommendations. I do appreciate we are extremely lucky to be part of this programme and sad that it is not immediately available to all.

It's great to read how a couple of people have posted a clear recognition that Dad is fairly advanced. So often my friends, untouched by dementia, make the huge mistake of commenting, "You're Dad looks great, you could never tell". I appreciate that they don't see the day to day struggle and growing loneliness experienced by my Mum as his sole carer, but i find it hard to understand how they can not see the vacant and haunting look in his eye that is becoming more regular. It's so reassuring you picked up on this.

I'm enjoying reading all of your opinions and look forward to using this forum more.
Becca
 

Margarita

Registered User
Feb 17, 2006
10,824
0
london
Chrissyan, unfortunately as the documentary was focused on Terry the majority of the filming was solely on myself to compensate for Terry's daughter not wanting to be involved.

That what I thought also.

Welcome to TP Becca .
 

Brucie

Registered User
Jan 31, 2004
12,413
0
near London
Hi Becca

such a fantastic thing for you to come to Talking Point! Thank you.

For many, the part of the second programme with you and your Dad was the part to which they could best relate.

I know a number of members have said they want to see someone not a celebrity featured as the main part of a documentary to make it more 'real', and if anyone asked me, I'd be suggesting you and your Dad as a good starting place.

Thanks for explaining a little history.

I probably found it very poignant because my wife was around the same age when her symptoms began, and she passed your Dad's stage ages ago. The programme took me back.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
72,394
0
Kent
Hello Becca

Welcome to Talking Point [another TP] :)

Your part in the Terry Pratchett documentary was very moving and my heart went out to you.

I hope you will stay with TP. There are many members in your position, caring for parents, and I hope you will benefit from their support.