Bbc - One Life - My Life On A Post It Note

[Jackie]

Last night the BBC showed a documentary on Christine Lyall-Grant is 65 [diagnosed at 61] who has early-onset Alzheimer's and how it affects not only her but also people around around mainky her daughter, Fiona who is 38. For once it highlighted the fact that most people think of the disease as one of old age, but the number of younger people affected is growing steadily.

For once it was a 'real life' situation, with true and honest feelings from both the sufferer and her daughter, and was filmed over a period of 12 months.

I cant understand why the Alzheimers Society did not promote this documentary on their website, especially as it was highlighing that it just DOESNT affect older people.

It was the most sensitive and true to life fact of this cruel disease and how it affects EVERYONE involved and not just the sufferer, and how 'real' people really do deal with it.

As a daugther of a younger sufferer [my mum is 54 and in the late stages] I could relate to everything that was said and how it was handled, the changes & progression of the disease everything and it just reassured me that I wasnt alone in what was happening or how I was handling the whole thing.

Shame it wasnt promoted on you home page, where as I apprecaite any publicity the Society recieves - ie: Mike Baldwins Character - this documentary was REAL LIFE...............

You can read more on this documentary http://www.bbc.co.uk/health/tv_and_radio/onelife_series6prog1.shtml

 

[widget]

Hi Jackie

I didn't see it advertised anywhere, and it was on so late! I was just about to go to bed when i did a quick channel-hop and saw fiona talking about alzheimers, of course i sat back down and was glued to the rest.

What struck me was what an intelligent and eloquent lady chris is, and that the alzheimers hasn't as yet affected her speech and her ability to convey her thoughts and feelings. She reminded me a lot of of Iris Murdoch.

I was so moved by the talk of voluntary euthanasia and how she just wants to swim off into the sea and not come back....

Well done BBC for producing such a thought provoking and informative programme. I just wish it had been advertised more so that i could have seen the first part!!

 

[mojofilter]

did anyone tape this show ?????

I missed it and I'd love to watch it ..

Paul

 

[Margarita]

Jackie

I never new it was on ,so thanks for the link

 

[Dearth]

I had another version of this thread in the "Raising Awareness" section... didn't realise this was here too sorry!

So here I will post what was there re: this excellent documentary:


ONE life follows the story of Christine Lyall-Grant who has early-onset dementia, and her daughter, Fiona, who is struggling to come to terms with her mother's reliance on her.

More info:

Click Here

I found this to be an excellent and well presented documentary.

As a big advocate of 'Humour Therapy' I can see that Christine appears to use humour to cope with some distressing issues, which I found to be both positive and uplifting regarding this much maligned (or ignored) illness.

After the 'Mike Baldwin' story on Coronation Street which I personally found to be VERY depressing and an oversimplified 'summary' of dementia, it is excellent to see something like this...

Someone discussing issues about euthanasia openly

Expressing wishes NOT to go into a care home

Talking about the joy of finding a lost object, which I found interesting - a 'positive' re: dementia and Alzheimer's and something you don't often see portrayed.

In both my personal and professional interests I have two things re: Alzheimer's and Dementia that are important to me for giving 'insight' into these issues:

"Malcolm & Barbara: A Love Story" (an excellent documentary)
"Dancing With Dementia: My Story of Living Positively with Dementia" by Christine Bryden (an excellent book)

I now have a third to add - this prog.

I really do feel that Christine and Fiona have done something positive by letting this be seen, which will help get rid of the stigma of this illness!




N.

 

[Tender Face]

I was so moved by the talk of voluntary euthanasia and how she just wants to swim off into the sea and not come back....

Did any one else's heart miss a beat as daughter sat on the sands as mum took to the water? (Over-protective, moi?!?)

Absolutely adored the humour and honesty ... I might start a 'Hatch, Match, Dispatch' board myself - with the very definite 'NOT YET' to conclude!!!!! (The matching I might have to negotiate!!!!)

(And yes, I do know that glass of red and a 'quick fix' by the back door!!!)

Wonderful people - like so many here - brave enough to share their own story....

Hugs, all, x

 

[connie]

Whilst I adored the humour, am I the only one who felt this was A.D sanitized.

If loss of memory was all that my dear Lionel had to contend with.................
no mention of anything else. (pease excuse me, bad day today, worse night tonight0.

As a program, very well presented.................but what is the tagline of one of our number.......when you have seen one person with dementia, you have seen one person with dementia

 

[Nutty Nan]

I don't know about sanitized, Connie - perhaps Christine's decline is so slow that her main problems so far are 'only' forgetfulness and losing (and happily finding!) things.
She is showing great courage in her attitude and the way she accepts her situation, she even seems amazingly aware of what the future may hold for her.

Unfortunately, we never even experienced the stage Christine is at, my memories of 'early days' are more dramatic and desperate than that, and for this reason it felt as though I was watching the 'wrong' programme. A bit like trying to compare Playgroup with Student Life, or someone living in a large country house with someone else in a small bungalow ..... But then, I am not sure that our day-to-day struggles and worries would make particularly good TV viewing.

As someone else suggested: a follow-up programme, perhaps yearly instalments, would be very interesting.

Hope your night improves, Connie!

 

[noelphobic]

Unfortunately, we never even experienced the stage Christine is at, my memories of 'early days' are more dramatic and desperate than that, and for this reason it felt as though I was watching the 'wrong' programme. A bit like trying to compare Playgroup with Student Life, or someone living in a large country house with someone else in a small bungalow ..... But then, I am not sure that our day-to-day struggles and worries would make particularly good TV viewing.
I]

I have to agree with you here. I only saw half of the programme (still hoping to catch up with the other half) and Christine was nothing like my mum is or ever has been. Obviously they are vey different people and we are not even sure of the type of dementia my mum has. Plus the progression is different in everyone. Even taking all that into account I was amazed by how well Christine came across and thought that she probably had more marbles than me (who said 'not many then'!)

 

[Tender Face]

Whilst I adored the humour, am I the only one who felt this was A.D sanitized.

Connie (and all) I realise I am on a steep learning curve here - thanks to all of you who are so honest about what may be ahead for me (and those who are sharing the angst of the current learning curve).

Made me realise that if I hadn't come here to TP and taken my 'cues' from what has been on TV recently, what would my view of AD (for that read DLB, VD etc) have been?

In recent weeks I have seen Tony Robinson's 'Me and my mum', 'Stairlift to Heaven', and Christine's story (and Corrie's Mike Baldwin deserves a mention here in this context, methinks).... just realised common thread fact or fictional ... all 'sufferers' and/or their carers are/were strong/intelligent/successful/financially comfortable...

When are we going to see working class 'Joe Bloggs' and his family battling for support with this - and in 'later stages'?????? Perhaps that doesn't make for good TV? Might just be too painful.....

HHmmmm, thanks for the prompt, Connie............ TF

 

[Brucie]

Hi Connie

A.D sanitized.

I reckoned that she is about 2-3 years from the point where her symptoms will become Jan's level at the time when we were having most trouble. I just don't think the patient is far enough down the line to be compared to Lionel......

 

[mocha]

Not really me

I came on tonight to see what other people thought of the programme because honestly I couldn't believe I was watching someone with Alzheimer's so long after the diagnosis as Christine. When my husband was diagnosed in 2002[exactly 4 yrs ago] he was well past that stage, and when she was d oing the the P words I was astonished. I attend carer's meetings and not one there didn't think that the programme gave the wrong impression that Alzheimer's was just another memory blip.
As we say, every body is different and this compares with the gentleman who works an 8hr day and drives.Oh, if only it was like that

 

[jc141265]

Angry Nat

Connie, although I didn't see the program, me being in Australia and all, I think I understand exactly what you meant when you dared to suggest that maybe it was "sanistising" AD in someway.

Have seen documentaries before of 'real' people with the disease and unfortunately even though I encourage more and more coverage of this disease so that people can see what it truly is , i.e. not just about forgetting, I find that I am often very much let down by the content of the programs.

I wish I could convince someone to come and film my father now at his stage (but I know the rest of my family would object anyway so wouldn't) but at the same time, I worry that even then film probably wouldn't be able to capture the pain in my heart, and people would just see the crazy man before them and not see who he was before. Or would they?

The problem is that by the time it gets to the really bad stages, everyone involved is so miserable that they don't want to be on tv or letting people see their loved one in such a state...then there's always the question I even had for myself when I took some video of Dad so that I had a memory to keep....is it ethical to film someone who can't give their permission for it? Filming anyone before things get this bad, always results in alzheimers being presented through a fuzzy warm romantic lens....somewhat 'sanitised'.

I experienced this when an ex prime minister's wife who had early onset AD took part in a documentary with her daughters, here in Australia. I spent the entire time glued to the set, full of admiration and applause that they went public but then so full of anger that they made it all look so pretty, something you can joke about (even though I know that that is what you do do, to get by...I think sometimes our humour about the situation tends to make outsiders think things aren't that bad), something that was unfortunate, regrettable but something that just had to be accepted.

My poor husband got to hear me yelling at the tv, pacing round the room, saying ' Noooo, you've got to tell them what it really is about, you just wait and see, its going to get to a point that its not easy any more, its not just a little bit sad anymore, but tearing your heart out.....you're giving them (the viewers) the wrong message, you're making it sound like its all ok, sad but ok...noone is going to get off their butt to help find a cure if they continue to think of it all as a 'nice way to go'. Its weird that in such a scenario I have found that in a sick way, I get a little grim satisfaction knowing that these people who are pish poshing those who say how bad the disease is, are going to end up where we are in the end...I don't admire myself for feeling like that, but I do.

As for swimming off into the sea to end it all...well its good that they pointed out that suicide often seems the only rational choice rather than accepting this disease..thats how bad it is.., but people need to know that by the time things get bad enough to truly contemplate suicide (and I mean get serious about the thought and not just romanticise about it) the chances are that the sufferer is no longer capable of either mentally or physcially performing the act. Its all very well and good to say one contemplates suicide, but the reality of suicide is not romantic, peaceful or pretty, a dying body loses control of its bodily functions, the body will still rot and to have gotten to such a point as to be driven to this act speaks of certain horrors. (Sorry if I am upsetting anyone, but suicide should not be romaniticised or sanitised).

Sorry again...I guess AD has made me an angry soul.

Also to Tenderface who said

all (fictional) 'sufferers' and/or their carers are/were strong/intelligent/successful/financially comfortable...When are we going to see working class 'Joe Bloggs' and his family battling for support with this - and in 'later stages'??????

My father I do believe was strong/intelligent/successful/financially comfortable and I don't believe this has given him or us any advantage in this disease. He has lost everything that he worked for, anything he was hoping to be saved for his kids will be gone by the time he is dead, and thanks to the social security system here in Australia you might be happy to know that here at least he is no better off than Joe Bloggs as what Dad has to pay for, because his 'financial position' allows him to, others get for free. (Of course if he was super duper rich, perhaps he could have afforded a personal nurse...and then maybe there is a slight advantage for a while, but where is there advantage when one is dying and in such a horrible way?) Unlike many of you who I read on here about who have to try to keep working while looking after your loved ones...my mother has not had to work...but i think its a bit like having children, you either work yourself to exhaustion at work while trying to look after the house, or you send yourself insane because you have no escape from the house....

So I suggest if the situations of these characters appears unreal and in no way compares to the average Joe Bloggs, I don't think thats because the disease it discriminatory, i think its because the characters are fictional, romantic, sanitised.

 

[sequoia]

I didn't see the BBC prog -- I chose not to see it. Maybe it's true filming in the latter stages does throw up ethical issues about filming someone who cannot give their consent. And, this is TV with some horrors unavoidably screened out. Perhaps this programme though will help to get those not affected to begin to put Alzheimer's "on the map".

There was also another programme in this series that filmed the TV presenter Tony Robinson and his mum who had a diagnosis of dementia. It was very moving as you saw his mum's decline and the difficulties he and his family faced - such as guilt for not caring for her at home.

Both my mum and my aunt have had diagnoses of dementia. I took care of my mum and humour was a great part of it all I am proud to say: amongst all the pain and fear we also had a great laugh. This is also true with my aunt. Paradoxically, it has been the dementia - Alzheimer's- that has allowed me to get anywhere near her. She was so condemning and critical before. We also have a wondeful laugh together. I am also in despair at what is happening to her; I don't have much of a say.

However, I do not believe Alzheimer's is just a-terrible-awful-disease. There are awful, terrible effects but these, in my opinion, are mixed with many other lighter, touching times. Protraying it just as bleak makes those not affected (at the moment or ever) unnecessarily terrified. For me what is bleak is that there is much, much more of a need for support and understanding for those who both have dementia diagnosed and those caring for them; I believe there isn't nearly enough at present.

 

[Lynne]

My own thoughts so far

Unfortunately I haven't seen this programme yet - I hope to soon, as a friend has it recorded - but I have read the synopsis, some reviews and all your comments.

TV companies will not make programmes which no TV station will broadcast. The true protracted horror of dementia is, surely, never likely to make it onto the screen. Malcolm & Barbara was only shown on a minor satellite channel, and I'm sure only watched by those of us with a personal involvement in AD already. Whilst we might wish for a more realistic, less sanitized portrayal of dementia from start to finish, it would surely have to be in the form of a series, shown well after the event, with the cameras returning to the scene (as someone else suggested) yearly, or at 'significant' stages of Christine's deterioration. But wouldn't that be too callous, and a bit macabre ... ?

I came on tonight to see what other people thought of the programme because honestly
I couldn't believe I was watching someone with Alzheimer's so long after the diagnosis as Christine. When my husband was diagnosed in 2002 [exactly 4 yrs ago] he was well past that stage, and when she was doing the the P words I was astonished.
I attend carer's meetings and not one there didn't think that the programme gave the wrong impression that Alzheimer's was just another memory blip.

If there is one thing that I feel that such films and the Alzheimer's Society (& other related bodies) should try to get across strongly, it is the importance of getting a diagnosis AS SOON AS POSSIBLE, whilst symptoms can be treated effectively by drugs like Aricept WHILST THEY STILL DO SOME GOOD. (Huh - IF the know-it-alls at N.I.C.E. will release them to early stage sufferers, but that's another hobby-horse!)
Being in denial, and doing nothing, is not an option for me. I can't stop the progress of my Mum's AD, but I'll do everything possible to get the medics to support & prolong the 'early' stage she's at now, while she's still 'herself' rather than waste time & resources later prolonging the 'life' of an empty shell, from which the spirit has effectively departed already. Now I appreciate the terms I have used above sound hard and callous, and I have no wish to upset anyone who disagrees with them or feels differently. However, in earlier years, when discussing the demise of various relatives from various ailments, these are the sort of expressions my Mum (herself an ex-Nurse) has used on the subject.

My impression is that Christine was diagnosed much earlier than the average AD patient, so the film covered early stages - 'memory blips', by comparison to what most of you are living with. Whilst I wish with all my heart that it could be different, the Christine of a few years time is likely to be a very different person, just as my own mother will be. For someone diagnosed at a later stage of the disease - and depending on the treatment given, or lack of it - the progression is likely to be swifter (although not so fast as 'Mike Baldwin' was shown).

 

[mocha]

Re: My thoughts so far.

Hi, Lynne, Just read your letter quoting mine and I must put the record straight that we saw a doctor for my husband soon after I realized things were not normal. We paid for a private consultation[at home] because the hospital appointment was 6 mths ahead. I only realized how far advanced he was because of the memory test. It was very poor from the beginning but he was prescribed Aricept right away and then I read about Mementine[Ebixa] which NICE won't release.
I pay £320 for 168 tablets which last 3 mths.from the internet. I really think these have done wonders as far as slowing the disease down and keeping his life on an even keel.
The disease definitaly proceeds faster in some cases. The other day my friend was in hysterics[laughing] when I said that our husbands had"gallopingitis" . I just don't think that it was a true representation, But probably the other side would be too harrowing. It's very interesting to read other people's opinions.
I'd just like to say I had never seen a computor until 18mths ago and it has been my saviour. Surfing the web is my new Hobby in my 70's.

 

[Linda Mc]

I have just watched the programme with my husband and found it very thought provoking.

Interestingly my husband could see no comparisons with himself, whilst of course I could see many!

Her score in the MMSE was much higher than his and she was able to write and express herself very well, yet her homelife was a shambles. It just goes to show that each case differs enormously.

Linda

 

[noelphobic]

Her score in the MMSE was much higher than his and she was able to write and express herself very well, yet her homelife was a shambles. It just goes to show that each case differs enormously.

Linda

I wouldn't agree that her homelife was a shambles! She said herself that she had always been a 'slut' as far as housework was concerned. Her daughter did say that she was more untidy than she had been in the past but I have to say that if having a messy house is an indicator of dementia then I must have had it for years I would think it could be seen as a sign when someone who had always been extremely clean and tidy and fastidious suddenly became messy of course! I do even know of someone who has an internet site showing the state of his mother's flat which I find quite shocking - the fact that he would publish pictures of it on the internet, not the state of the flat, although it is messy

 

[Tender Face]

Nat: "My father I do believe was strong/intelligent/successful/financially comfortable and I don't believe this has given him or us any advantage in this disease."

Nat, I was not suggesting any kind of 'advantage'. Quite the opposite, if anything, just noting how media and TV focus.

At least, given my mum is of 'average' intelligence', of 'average' income and 'modest' achievement, I will be spared crass comments like 'Oh, but she had such a good brain.'..... just an 'ordinary' person, no great academic, no great success - doesn't mean the world isn't crumbling around us 'cause for all her 'averageness' she is obviously unique and special, priceless and irreplacable to those who love her.....

Nat: " or you send yourself insane because you have no escape from the house...."

... or you worry yourself sick you're not gonna meet the rent/mortgage payment.... there is a lot of juggling...... and often no choice.....

Nat: "I don't think thats because the disease it discriminatory".

Quite, my point. Just its portrayal at the mo. (In the UK at least).

 

[jc141265]

Tender,

Bear with me...I was too exhausted the other day to spend the time to be tactful...(Lynne will vouch for the fact that I already wrote to her saying I was staying off TP because I was afraid I would offend people...was just in that sort of frame of mind...I become very harsh and unfortunately let everyone feel my anger).

I knew u weren't having a go, or insinuating the better off you before dementia the better off you are after....I did read what you said and know you were talking about the way society is portraying things. If you read my post, although I quoted you I didn't say I had any problem with what you said, I just pointed out that despite what they show on tv, there ain't much difference I believe between Joe Bloggs story and Mr Betteroff....however I was wrong not to clarify that I wasn't thinking you actually thought Mr Betteroff was betteroff.

As I said I was too lazy to be tactful and had spent a week, fighting with my mother, trying to get her to find a way to use Dad's money to provide better care for him...I am so frustrated that he worked his butt off his whole life, had heaps of superannuation and is now a man who sits in dirty nappies on a regular basis. Aaaaargh! I just didn't want anyone to be confused and think that its necessarily less distressing if you are well off....because frankly my greatest distress with this disease is to see Dad lose all of his rights, power and property despite having always been an honest hardworking man whose integrity could never be questioned.