BBC 1 - Tuesday 20th May 2008 - 22:35PM - Mum and Me

[Bristolbelle]

Shameless!!!

That was the only way to explain the way Sue and Holly behaved. OK Holly is young and bound to be influenced by her mother but Sue....
I could not believe she though she had it so hard, spending just one weekend in four with her Mum, if she wanted it easier why not move her mother closer after all she is the only person in touch with her now. She has researched nothing about the condition and the need for familiarity, racing her mother here and there to posh restaurants etc. What about game of cards (teams Holly and Ethel versus Sue if necessary) Or going through photos together keeping what memories there are alive? OK so Sue had a mastectomy and God knows none of us can anticipate what that might do to us, but even before this she was verbally abusive, and took delight in humiliating and degrading her mother egged on by Holly. If one of the nurses treated Ethel like this I'm sure Sue would be the first on to her lawyers.
The incident in the car was inexcusable she should have made sure her mother had her seat belt on, most elderly people have problems with seat belts even without the additional impact of Alzheimer's.
Most importantly there is no way Ethels consent for the film should have been accepted as she is obviously not in a state of mind to give knowledgeable consent, in this there are legal issues that I feel someone should be looking into on Ethels behalf.
I feel the best thing that could happen here is that in future Sue is only allowed supervised visits to her Mother. It would be standard practice in a child abuse case so why not in a case like this?
I am a multiple carer for four yes FOUR! members of my family, I'm not superwoman I get tired frustrated and angry, but God forbid I should ever lower myself to humiliation and degradation.
The programme did NOTHING to forward the causes of sufferers or carers of Alzeimhers - Give me a camera please I swear I'll do better!

 

[jane@hotmail]

I found the programme quite hard to watch, especially as it progressed. Whilst I admire the truthfulness in the content of the programme for that particular family, I was shocked at the lack of understanding of her mothers behaviour on occasions.Sue seemed ignorant of why her mum was behaving and saying things that were obvious, even to us, out of character for her. Any one viewing the programme without any knowledge or experience of Alzhiemers would, like Sue, think Ethel was a troublesome, ungrateful old lady. Which we could all see, was quite the contrary.I felt an injustice had been done on Ethel, and it was very one sided. May be I'm just missing the point! But iether way, it left me feeling like I just wanted to hug poor Ethel and tell her how wonderful she was.

 

[VIB35]

Hi, I found this programme portrayed a completely different picture of the illness to the one we are going through. My mother has early onset dementia aged 64 and can no longer string a proper sentence together, eat normal food herself or manage to open presents. Ethel was amazing in that she could still do all this and was so happy. My mother is depressed, low and smiles very little and her deterioration has been so aggressive where as they said on the programme that Ethel has deteriorated very little mentally in the 3 yrs of filming. It was like watching a different a lady with a different illness. I also disliked all the swearing in the programme which was completely un called for and to say things like 'i love you granny but you're nuts' just broke my heart.....

 

[Margarita]

The begging was lovely it’s reminded me of my mother when she loved going to all the cafe restaurants with me it nearly had me in tears just remembering those time with my mother, but as the diseases progressed it started to show the reality of livening with AZ.

But I do agree with everyone, the daughter & granddaughter just seem so disrespectful of Ethel symptoms of AZ, the poor woman I felt so sorry for her. They where swearing at her degrading her .

The daughter said she was lucky that her mother is happy person with AZ, yeah well as the disease progressed; she was seeing the reality of it was like she could not bear seeing her mother not happy smiling laughing. so when her mother got grumpy moaning she get rude to the mother ****** hell the woman got a disease, she got a right to get the hump ,moan get grumpy . Daughter & granddaughter just did not acknowledge Ethel feeling. They were just so disrespectful to Ethel I could not believe what I was seeing
I can’t believe the daughter expecting her mother to be grateful for her visits, excepting her mother to be happy all the time. The part when Ethel was being told of for taking her pads of when going to the toilet reminded me what my mother does but how her daughter expected her mother to remember not to do that is just lack of understanding of AZ.
The daughter said she done the filming, to show every one they humour in AZ. I am glad she done it because it shows peoples the reality of living with someone with a dementia when you have no understanding of the disease or symptoms.


When daughter, mother was both crying it did hit home for me, because I thought how lucky even that the stage Ethel was in, they both could cry together. While all the daughter was worried about was not seeing her mother upset, because she get upset God my mother never cried to me I wish she would show me those feeling . I suppose its like the saying go, you never know what you got till it gone, Ethel to me seem one lovely lady. But then like the daughter said. she never had a good relationship with her mother in the past , may be that why she came across to me bitter towards her mother.

They say they should train doctor nurses, will sorry after seeing that filming them should also offer training for the carer

 

[Skye]

I've just watched it, and have found everyone's comments very perceptive.

I've no experience of caring for a parent with dementia, and recognise that in many ways it must be harder than caring for a partner.

In some ways I admire Sue for portraying herself, warts and all, and know that the stresses can build up in the carer, particularly if he/she is under the weather.

But some af the passages were very cruel and degrading to Ethel.

I was also amazed at how Ethel retained her verbal abilities and sense of humour. That is completely different from my experience with John. Ethel was a complete star, and a mum any daughter should be proud of.

I too think it would have been kinder, and made more sense, to move her closer to Sue and Holly, so that they could see her more often. As it was, I felt they tried to pack too much into their visits, which made them too stressful for everyone.

Worth doing? I'm not sure.

The programme showed certain aspects of dementia, but perhaps not the more usual ones. It certainly revealed the stress of caring for someone with dementia, and the fact that we can all crack under pressure.

I can understand Sue making it; what I'm not sure about is why she wanted it broadcast. She certainly didn't do herself any favours.

Publicity for dementia? Well, perhaps, but like two other programmes we've discussed recently, the effect may not be quite what Sue intended.

 

[CraigC]

Interesting review in the Times Online today:

http://entertainment.timesonline.co.uk/tol/arts_and_entertainment/tv_and_radio/article3970975.ece

I was also amazed at how Ethel retained her verbal abilities and sense of humour

Hazel, I think that some forms of dementia allow people to retain verbal reasoning a lot longer. Terry Pratchett mentioned this in his interview yesterday. I think he has a variant 'familial' which damages at the back of the brain and retains verbal reasoning. Until recently I had no idea how many forms of dementia there were - it is frightening.

kind regards
Craig

 

[helen.tomlinson]

It was as I expected - not very helpful. I found it disrespectful, didn't feel the humour was appropriate and I turned it off half way through.

Love to you all Helen

 

[Windfall]

Mum & Me

I sat and cried through-out the programme and actually found it very poignant. Raw, yes, but very honest and actually didn't feel that Ethel lost any dignity at all. I thought that in spite of the incontinence and accidents and rows we also saw her beauty, strength and individuality of character. For me the bond between the three generations was clearly evident as was the pain Sue felt at losing her mother.

I found it moving and honest. My mother is at a similar stage of the illness and much of what the three women were feeling was very, very familar.

Not trying to be controversial just my opinion at the moment.

 

[Grannie G]

To Hazel

Dhiren still has verbal abilities and, believe it or not, a good sense of humour [on a good day].

 

[Mameeskye]

I did watch it. Their experience was just so different to mine although there were shades of familiarity.

My thoughts:-
At first I was shocked by the attitudes. I do not know how much sadness possibly fell onto the cutting room floor. I sometimes laugh when hiding my true feelings. I do not know if this is what Ethel was doing or, if her family had always had that sort of joking, almost degrading humour. If they had done, then maybe they were laughing together.

It would not have sat easy with me to have been as her daughter was, but then I know that my family's sense of humour is not that of my inlaws. I could not have said things that way to my Mum (in fact for years I used the term "daft bat" said with love; I ceased to use as it became apparent that she had dementia)

My father used to say that you can only insult those you truly know and love as they are the people who appreciate the jest.

At first I was shocked by some of the scenes, the bathroom etc. Would I have wanted those viewed? But it is the rather shocking reality of dementia that while we, the carers, care about it those who suffer cease to. Maybe by being there they will let an audience see that AZ is not a little forgetfulness about where your keys are.

As to the daughter only visiting once a month. I have been that daughter when I lived 250 miles away with twin toddlers. Why didn't I move my Mum closer? I would have done, I even asked her when she was able to give an answer about where she wished to reside would she liked to live near me. She replied no, that she did not, she wished to be by her friends. Those same friends stopped visiting as the disease progressed and her memory faltered. By leaving her far away my brother did visit, which he would not have done had she lived by me, as he would not have made the commitment to travel.

Her monthly visits and her near enough daily phone calls to me demonstrated a huge commitment. Should she have moved her Mum closer as the illness progressed? I wrestled with that one, but my Mum was familiar with the NH she was in and was well cared for there. I think, that even for more frequent visits, it would have been the wrong thing to do for her. Moving would only have confused and distressed her. She liked where she was and it was a good NH. Luckily I ended up moving closer to my Mum.

Would I have videoed my life? No. Would I have shared it had I done? No.

But maybe that is why research into this disease is so poorly supported, because the degradation it causes, the cruelty families can inflict even through ignorance etc. is not seen and is not understood. Or is it just that today's society places so little value on the over 40s who are the majority sufferers?

I think as someone posted today that it is only with hindsight that we can see the reality of this disease. We cannot comprehend what it must feel like because it is not our brains that are involved. For each and very person that is different.

Mameeskye

 

[Lynne]

Bravo Mameeskye

Not only for screwing up your courage to watch this programme, but for going against the flow of TP opinion and pointing out how it was uncomfortably close to reality in its true sense.

I was only able to watch the 2nd half hour (have recorded it for when I can view it alone) but my impression, as a daughter caring for her own mother, was of the similarity - sometimes uncomfortable - of the relationships & interaction between the 3 women.

My mother being a former nurse, black-humour has always been the norm in our family, and still is even 3 years into Alzheimers.
Yes, loving daughters DO get to the end of their tethers, get grumpy, feel ill themselves (perhaps no-one noticed that the daughter had breast cancer and a mastectomy during the time-frame covered in their film?) and feel at their wits end as to how to try to make life interesting or better for a frail person.
I too have thought I would take my Mum away for a week 'as a treat', only for the whole thing to go horribly, horribly wrong.

Maybe I'll change my opinion when I've had the chance to view the programme in its entirety, but that was my initial impression.

 

[taylorcat]

It is not the humour (or lack of it) which I found disturbing.

I really don't believe that had Ether had her full wits about her she would have wanted to be filmed sitting on the toilet, wetting herself, getting changed for bed etc. etc.

I know I wouldn't. I do agree that everyone can lose their cool now and again or we wouldn't be human but in my opinion there were far too many things filmed which should be kept private.

 

[sue38]

I watched the programme too, and like others, saw a very different portrayal of AD than the one we are experiencing with my Dad, although some things were familiar.

I thought Ethel was wonderful. A really fiesty and funny lady, and Sue acknowledged that she was lucky that unlike other sufferers, her Mum had retained her sense of humour and was generally cheerful.

I thought Sue was very brave to show those parts of the filming where she 'lost it' with her mother. She admitted that she was not proud of the incident in the car, and had she been less honest could have cut this scene. Speaking personally, I don't always have the patience I should have, and if I am having a bad day, can get exasperated and forget it is the disease I am annoyed with. Would I like these times to be shown on National TV? Probably not.

Clearly Sue had had a difficult relationship with mother in the past and this affected the way she dealt with her mother when she wasn't the cheerful, easy-going lady she had become in recent years.

The humour didn't offend me particularly (Ethel often gave as good as she got), nor did the bathroom scenes (although I do agree that Ethel may not have been able to give informed and valid consent to these being shown).

What did offend me however was what I perceived to be Sue's cruelty in constantly pointing out to her mother her predicament. In the scene where Sue found her mum crying, Ethel tried to dry her tears and said 'What have I got to be sad about?' at which point Sue said 'Well, you've got AD, you're in a home, nobody cares for you....'

Sue was constantly testing her mother 'Who am I? Whose house is this? Where are we going? What did we do today?' Whether this was to demonstrate the effects of AD for the camera or to humiliate and distress her mother I don't know.

I found it interesting that Ethel did not seem to deteriorate in the 3 years of filming.

I cannot say whether it helped with the public perception of AD as I have yet to find any 'outsiders' who watched it.

 

[Skye]

Mameeskye, I was hoping you'd watch the programme and comment. You're one of the members who has been closest to the experience the programme displayed.

Your comments are interesting, as you are able to see it from Sue's point of view, whereas most of us were more concerned with the efect on Ethel.

What did offend me however was what I perceived to be Sue's cruelty in constantly pointing out to her mother her predicament. In the scene where Sue found her mum crying, Ethel tried to dry her tears and said 'What have I got to be sad about?' at which point Sue said 'Well, you've got AD, you're in a home, nobody cares for you....'

This upset me, too. She also kept reminding Ethel that everyone who had loved her was dead, and that she was in a NH because no-one wanted her to live with them.

Sadly true, but also incredibly cruel.

 

[Margarita]

But maybe that is why research into this disease is so poorly supported, because the degradation it causes, the cruelty families can inflict even through ignorance etc. is not seen and is not understood. Or is it just that today's society places so little value on the over 40s who are the majority sufferer

I feel its more to do that society puts more value on materialistic thinks , with wanting to fit in with society and not caring about what is really important,
caring for someone that is losing the ability to give of the self , due to a disability of the mind that can happen from not only a dementia , but from any brain damage , so they must perceive the person not as a whole person , but someone that is not a value to society because they can not give of the self any more

some people do not like giving the part of the self only when they feel they are getting gratification back


The daughter proved that when she said , that she gone all the way to see her mother taken her to the most expensive restaurant & all she did was embarrassed her .

So they call it Black humor , I call it negative humor

 

[Splat88]

I have to admit I found the bathing and soiling scenes etc unecessary, but as for the rest of it, I'm afraid for those of us caring for parents it is frighteningly familiar. Sue obviously loves her mum, and Ethels cheerful attitude is at odds with the AZ I am familiar with, but I can only admire her for her attempts to entertain. Her way of dealing with it maybe? I know only too well that the harsh words may seem cruel, but will soon be forgotten by both parties.

It would have been so much easier to have only shown the "pretty" bits, and I think her portrayal was very honest. The most telling comment to me was the one about the child becoming the parent, and only those of us looking after parents can fully appreciate that.

 

[hendy]

Dear All
I only managed to catch the last half of the programme. What I did see made me feel so sad. Ethel had the most lovely smile and this spoke volumes about her and how she is managing her illness. This reminded me of Dad, he also had a wonderful sense of humour and a beaming jolly smile. Its gone now, he has no facial expression. If Sue could have just seen this about her mum... I thought that there was just too many cruel uncaring remarks. I thought Sue was playing up to the camera. There didn't appear to be any compassion. How could she swear at her mum? Call me old fashioned, I can swear like a trouper, but I wouldn't dream of using language like that at my poorly dad. How could she let her mum be filmed in the bath and having accidents? There was no way her mum could have given proper consent. I agree with others on this point. I felt that Ethel was exploited because of her vulnerability.
take care
hendy

 

[Brucie]

Finally managed to watch it this evening, just as well there was nothing else on, otherwise it might have taken a few days!

After the comments previously in the thread I was apprehensive at what I might see.

I found the film a very moving portrayal of a very familiar situation. Clearly Ethel loved and was loved; a quite outstanding person. Her relationship was such a good one with her daughter and grand-daughter. Their banter reflects similar banter I have encountered with other families through life, and with dementia it clearly doesn't change.

Trying to encapsulate the dementia experience for others is immensely difficult as it means letting others into your life - it can be no more difficult that when you use a film camera to do that. Even more so when you are the camera operator, the director as well as being on camera as well.

Everyone has different ways they express their relationships, so there will always be clashes of style for onlookers.

The film set out to be one that showed there could still be laughter in dementia world, and it managed to show the other sides well too.

It covered a wide range of aspects of living with dementia and did so well.

For me, it worked.

I was left as always, sad at the trashing of lives, but with a better understanding of someone else's dementia experience - one that is far different than ours.

Final point: I saw no cruelty there, only love. I found it one of the best portrayals of the subject I've seen.

 

[Nutty Nan]

Every carer, every sufferer, every situation .... is unique. The way we care, the way we express our love or our humour is also unique, and for all those reasons I can accept Sue's documentary as it stands.
However: I felt uncomfortable witnessing their emphasis on Ethel's shortcomings, her accidents, her muddled memories. They hardly seemed to acknowledge what an amazingly strong and positive woman she is. I did sense their bond, but much was said and done at the expense of that lovely elderly lady. I certainly question whether anyone would be 'happy' to be filmed on the toilet (yes, I know it's life, but does that mean we should stand and stare???). The words privacy and dignity come to mind.

I wish Alzheimer's was as simple as this for everyone. Sadly, most of us know different.

 

[Amy]

I watched this programme....somewhat reluctantly...as i did not wish to remember.
I thought the relationships between the generations were brilliant.....a family where humour and laughter were obviously ways of dealing with life's situations.
It was designed to give an insight into one family's journey...one family living with dementia...and it did that. I am sure there were times when i passed quips about mum's forgetfulness, but certainly not with the intention of being hurtful or disrespectful.......i think we have all tried to make our loved ones recall things....what they have eaten...what they have done...who we are...not in a bid to show how much they have forgotten....but in the desperate hope that they will remember.
And we all know that incontinence is a part of dementia...there is no shame in it...just another practicality that has to be dealt with.
I think that the family showed courage in sharing this film....i did not feel that Ethel was degraded.....I think her daughter knew that at times she got things wrong....as all of us carers do..but she was prepared to open herself to criticism because she believed that it would promote dementia awareness.
I think the general public will only get an insight into the reality of living with dementia, when they get a fly on the wall view....and that may at times involve things that some would rather not see.
Helen