"Me and My Mum" C4 this evening

[Brucie]

I always watch any programmes that feature dementia with some trepidation, but this one was excellently presented by Tony Robinson, and everyone in it, especially his Mum.

A hugely moving programme that covered pretty much everything in such a sensitive way.

I'm left with two thoughts:

Firstly that each time I saw Tony's Mum I felt I was looking at my Jan, and she is only 65. The same bright eyes and expressions.

Secondly, I pondered on a panel I was on at the AS Conference last year. At one point I was saying that I take pictures of Jan as she is now, and some of the audience called out "what about human dignity?" I hope they watched this programme - could anyone be more dignified than his Mum, throughout the programme?

Good programme, shame nothing will improve because of it!

 

[Amy]

Hiya Brucie,
My mum too.
Just a thought but shouting out

"what about human dignity?"

isn't this indicative of how they view dementia. I am sad that they do not have the eyes to see the beautiful person that we know and see.
Love from,
Amy

 

[Brucie]

isn't this indicative of how they view dementia

yes, but the scary thing was that these folks worked at AS branches....

 

[May]

A very sensitively made programme, it had me in tears, not because of the content, but because of the thought that as a society we should do better.

 

[daughter]

What an honest and sensitive look at dementia and the way that older people in general are viewed in the U.K. I thought it was great how he suddenly went to question the BUPA PR man who at least admitted that he had not even thought about ways to make things better! I also loved the way Tony and his family all kept their humour, although the pain about his Mum and how it affected the rest of his family was obvious. It may not change anything tomorrow, or in a few years, but it might lead to lots more discussions out in the "real world" (not just here on TP!) leading to some eventual change in attitudes and some positive action. Am I being naive? I can only hope!

 

[Dearth]

Question for you all...

Does anyone know if this will be repeated?

I watched it... but sod's law dictated that the video had a 'funny un' and I couldn't record it

Very interesting yet ultimately sad prog.

The bits where both Tony and his son acknowledged her flirting was a nice touch... they were more interested in the fact that she seemed happy than whether or not she recognised her grandson - hard for a lot of people to come to terms with I know, so this was a nice touch.

Also painful to see but the 'general public' shoud be aware of was how she was towards the end before she passed away... again showing that it isn't the dementia that takes the life at the end, but an illness related to that.

Once more if anyone knows of it being repeated - please let me know.



N.

 

[mandyp]

This was a touching and thought provoking program.

The point made about the amount of money that people get for fostering a child in comparison to caring for a loved one was an extremely valid one. Also, as Tony pointed out, banning fox hunting, the war in Iraq and school dinners manage to leap to the front of the queue.

Personally, I disagree with the war in Iraq and feel that the money would have been better spent on care/health/housing etc. School dinners, I felt parents had a choice, if you’re unhappy with school meals then give your kids a packed lunch, but hey ho! I’m completely opposed to fox hunting and suffering of animals. However, I’m also opposed to the manner in which this country seem disregard not just the elderly, but anyone requiring some sort of care. Perhaps when we become an embarrassment and outlive our usefulness it’s only left to families/carers to muddle along as best they can, the government, it appears simply do not care.

I don’t think this attitude is wholly directed at the elderly, I think it’s where people (of all ages) are no longer accepted as ‘useful’ to society that it seems to become a problem. AD is a horrible disease, affecting entire families and it is time that someone sat up and took notice. However, as Brucie said, great program shame it won’t make any difference’.

MP's should be forced to watch it and look to their hearts (if they have one) and start to make some changes.

Mandy

 

[Tender Face]

I hope they watched this programme - could anyone be more dignified than his Mum, throughout the programme?

Good programme, shame nothing will improve because of it!

Not just dignified, but beautiful and serene. Phyllis moved 'dementia' away from 'demented'.

I hope I'm not breaching any copyright when I quote from the Daily Mail (Nigel Andrew who previewed the programme): "Channel 4 is making the kind of public service television that we used to rely on the BBC to provide."

Well done, Tony and God bless, Phyllis.

 

[ElaineMaul]

I was also deeply moved by the programme ..... in fact, moved to tears both by Tony's story and also the story of the family with two daughters who had to put their father in a care home. The wife's upset at 'abandoning' her husband ........ I can't find the words to describe how I felt for her. In fact, there were so many thought provoking things in the programme ..... it should be compulsory viewing for decision makers.

I was left wondering how to make a difference.......... so, thank-you, Nada for the link ........ I've just sent a message to my MP.

Is there anything else can we do?

Elaine

 

[Dearth]

One interesting point a colleague made, although he missed it...

Was Tony's Mother aware of the camera filming her? Did she give consent as such?

Because if not... surely it was an invasion of her privacy and thus there were issues regarding her dignity?

My opinion although I can't 100% guarantee this is actual fact is that she was not aware... but it raised an interesting point.

Which ever though, I still feel it was an important piece of documentary evidence that will certainly highlight the Dementia Issue and therefore give people in general much needed insight into the illness.

And some good news... well, for me anyway:

A mate recorded the programme onto DVD for me... and my Mum taped it, so she'll let me keep the tape when she's seen it.

It will certainly help me in my job also, along with the 'Malcolm & Barbara' documentary and the Alzheimer's Society's short documentary 'About my grandfather ... about my grandmother' - a six-minute film which features children of all ages speaking about their experiences of having a grandparent with dementia.

At some point, I hope to show some of these to colleagues and anyone involved in dementia care to give 'insight' into the illness... plus I still maintain that in Nursing, the Malcolm & Barbara documentary should be shown as part of the training because I feel it is an invaluable piece of research material!

Anyhow... I'd better stop going on now... I was only supposed to be saying:
"I've got the prog."



N.

 

[Brucie]

Was Tony's Mother aware of the camera filming her? Did she give consent as such?

Because if not... surely it was an invasion of her privacy and thus there were issues regarding her dignity?

My opinion although I can't 100% guarantee this is actual fact is that she was not aware... but it raised an interesting point.

It is an interesting point for discussion, and one most often raised by people not directly linked to the person in question. That is, not a closest relative.

Dementia is not a disease that easily carries dignity along with it in 'normal' terms.

However, my own feelings, through 15 years looking after Jan, and through very close contacts with other residents in her care home, are that, in the same way that their perception of their world changes, so does the definition of dignity [aka respect] by them [not 'for' them].

Incontinence, inability to feed, wash, dress, etc may all be considered an indignity by others, but like it or not, they are facts of life for them, and as such, they generally accept them.

As dementia develops, we have to make many decisions for them, in care, medication, by way of EPAs, selection of care homes, the clothes they wear, and so on. We do this with their best interests in mind, and also in a way that makes things better for others - the care home, in practical terms, etc.

The question of dignity and photography is a very difficult one, and at first I took pictures only to illustrate bruising, etc. Now I take [only very few] to show Jan as she is now. In that context I sometimes permit others to use the photographs because in doing so, it can help by highlighting the situation of those with dementia.

There is such poor knowledge around, and even when we try and spread the word, as in Corrie at present, a false impression must necessarily be given, not least in terms of time.

I believe that the closest relative, the one who initiates the pictures, or who permits that, will always ensure that this is done in the most sensitive way. Obviously there are times when one would not consider taking pictures, though they are times that might illustrate the challenges of dementia care.

Tony's programme was made with huge dignity and for those who bothered to watch it, it was immensely illuminating and true to life.

 

[Lynne]

Mrs Robinson was asked if the presence of the camera crew was OK within the first few minutes of the programme. (I've watched the start again to make sure)

Whilst agreeing that it (and other programmes like it) should raise awareness and understanding of Dementia issues, I don't actually believe that to be the case. I found it difficult to resist the urge to change channels myself, and I don't think anyone without an immediate, personal interest in AD or Dementia will have continued to watch it through to the end. Sorry to be negative, and I wouldn't be expressing such a down-beat view anywhere but here.

 

[Bets]

Thank you for that, Lynne.

Reading the previous posts, I felt like an ostrich because I couldn't bring myself to watch the programme and guilty that I hadn't. I experience living with dementia 24/7. Why do I want to watch more on TV? As my husband would be watching too (but without relating the subject to himself), I knew I would find it too distressing.

Bets

 

[mandyp]

Thanks for that Nada, my email has gone to my MP, think that one should be a sticky somewhere.

Mandy

 

[Dearth]

Mrs Robinson was asked if the presence of the camera crew was OK within the first few minutes of the programme. (I've watched the start again to make sure)

Many thanks for this information... I missed the first part of the prog. (but I will ensure to watch it from START to FINISH when I get the copy from my mate).

I think the thing re: dignity comes from working in a ward environment and I can appreciate it... if I can briefly explain what I mean...

When I first came onto the ward for a job interview, I did not go into the dayroom but went everywhere else... the reason being that people are 'not there to be gawped at' like exhibits - this is something I fully applaud... for all everyone knew, I might not be coming back - why subject people to my overlooking them?


Hope this explains what I'm on about a little more clearly... if not, please let me know and I'll give further info.



N.

 

[Margarita]

I thought it was a lovely well presented program, but it did make me wonder if my mother did not have Alzheimer’s would I have watch it ? It be interesting to find out how many people watch it .

Did anyone see the program after that one on the community channel on sky?

It said that the elderly people in privately run homes are not covered under the human right act !

 

[Dearth]

It said that the elderly people in privately run homes are not covered under the human right act !

Now that intrigues me... have you any more info about that?

N.

 

[Margarita]

No it just came in to the subject ,when they where talking about how the public only hear the negative views on care homes ( neglect of elderly people suffer in care home )& someone said that “did you know elderly people in privately run homes are not covered under the human right act ? “ they all seem a bit taken back ,& all that was said on that issue was ,they are trying to change it .

I was shock at it as will, how strange I wonder why ?Dearth how can we find out more on this issue ?

 

[Margarita]

Found the link to the community program

http://www.communitychannel.org/index.php?option=com_content&task=view&id=845&Itemid=86

 

[Dearth]

Dearth how can we find out more on this issue ?

Now that is something I will have to try and find out...

Here's some brief info I found on the Human Rights Act...
http://www.freedomtocare.org/page32.htm

If you scroll down to:
RESPECT FOR PRIVATE AND FAMILY LIFE

There is an issue there re: Nursing Homes... doesn't say whether it affects 'privately run' places.

I think that many of these things are interpretational... as a lecturer once said to us, there is 'Freedom Of Speech' - but that does not allow an individual to run amok in public shouting 'Rape' or 'Murder' purely for the hell of it.

Anyhow... if you can stomach it - here's the act in full... a little light reading!

http://www.opsi.gov.uk/ACTS/acts1998/19980042.htm

Sorry that I haven't more info than that... if I find anything out further I will let you know... I will also mither colleagues to see if they know.



N.

P.S. Ta for the link for the Community Channel... is it the same prog. repeated M, or are these different ones do you know?