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

[lesmisralbles]

If you have money

Seeing your parent (Mother) once a month.
And a phone call once a day.
And to keep telling that person they have alzheimers.
You call that love ?

We do not have money, Ron and I, but we have LOVE.
And I suspect, most of us, in our situation would prefer the 24/7 hand's on love we give.
When it might come time to let go, we do, but with a heavy heart.
And, from past experience, a once a month visit, well it would not do for me. Because I would hurt, I know the person who has this illness might not even remember you, but I would remember them, and the pain of not seeing them, does anyone understand ?
It is not about how much money we have, or what we can throw at them, new clothes, day out, etc. But about how we can make the person we love, feel loved.
Does anyone understand what I am trying to say ?
Love Barb & Ron X

 

[alfjess]

Hi

In my eyes Ethel is a star.

Unfortunatly, I can't say the same about her Daughter!

I would never speak to, or treat my mum, the way Sue did her's, even if it was meant to be humourous

Did Sue think of Ethel's feelings and dignity when broadcasting this film?

I don't see how this film, in anyway, can help carers, but maybe I've missed the point

Sorry, but my husband, my sister-in-law and myself were quite shocked that this was even broadcast.

Alfjess

 

[lesmisralbles]

Hi Alfjess
I agree with you.
No point whatsoever.
Barb & Ron X

 

[Tender Face]

I agree. Ethel IS a star - and I dare liken her to my own mum - she is feisty, has a 'wicked' sense of humour .... and while I sympathise with 'Sue' not having had the perfect relationship with her mother over the years .... I hope I treat my mum with at least the dignity she deserves ......

I promised myself I was not going to post on TP again - but this thread - and that wretched programe - has overcome my resolve .... the 'indignities' borne necessarily - surely they don't have to be filmed and publicly displayed? Yes, I am one who has had to 'parent' their parent and see the indignities in what should be the privacy of private bathrooms, as but one example ... but if I have done nothing else for mum I have not allowed her to be exposed to public scrutiny - whether people are understanding or not .....

I believe this programme was a violation of Ethel's basic human rights to dignity if nothing else, (let alone informed consent) .... and that her own daughter has betrayed her is beyond belief ......

Bruce, in part I agree with you (put that in your diary - doesn't happen often!) .... because I am ashamed some of my generation believe a Care Home and occasional visits 'make things OK' ....

Barb, I am absolutely with you .... I am one of the 'lucky ones' in terms of mum's financial status ... but no money in the world will make this right ..... time and love are all things ......

Love, Karen, x

 

[May]

I watched the programme but needed time to contemplate and assimilate what I had seen. The family dynamics were very strong and there was a lot of love there, we don't all show our feelings in the same way, we don't all visit in the same way, their way wouldn't be mine but we all have a past and present life that shapes our relationships. I felt uncomfortable watching the bathing and toiletting sequences, but do feel they were necessary to draw the whole picture, as to Ethel's consent for these, I feel that she was/is such a feisty lady she would be saying, 'just go ahead and do it'. Sue, being her mother's daughter (they are alike), I believe knew this.
A friend called me when the programme finished.She has no experience of dementia except through me and knowing my Mum. She said she found it was a moving and valuable illustration of what dementia really is,and it hit home that it's not just a 'little bit of memory loss'. I did comment to her that when you've seen one person with dementia, you've seen one person with dementia as all present differently, but I think that says it all.
All the above, just my opinion, take care all.

 

[SharonLyons]

I watched the programme and when it first started I have to admit to being a little envious of Sue's relationship with her mum. The way they could laugh and joke together I felt was wonderful and something I do not have with my mum. However, as the film progressed I became more and more disturbed by it. The scenes where Ethel was shown sitting on the toilet or in the bath were totally unacceptable. Sue could have got the point about incontinence across without subjecting her mum to the indignity of being seen by maybe millions of people with her knickers round her ankles. I would never ever subject my mum to something like that. Poor Ethel
Sharon x

 

[ChrisH]

I watched the prog last night. I wasn't going to as I thought it would be too depressing but Ethel got me hooked with her infectious laughter. By the end I was feeling slightly envious of Sue and Holly. Why should they, for the most part, have a mother/gran with such a wonderful smile on her face when my mum spends increasing amounts of time looking miserable? Why can't I make my mum laugh like that?

Yes, the 'accident' scenes were upsetting and I have yet to deal with that, and 'informed consent' was probably a bit questionable with regard to them. On the other hand, how much do 'ordinary' people (those with no or only second hand experience of AD) truely appreciate what this disease does to people. To most I suspect they only really know about 'getting a bit forgetful' or 'wandering around in a nightie' and have never seen anyone actually have to deal with the realities of heaving a person in and out of a bath and putting a nappy on an adult (and I have no experience of that myself either).

Barb, you probably didn't mean it, but I'm afraid your comments about 'only visiting once a month' seemed to imply that those of us who don't visit more often don't LOVE our parent(s) and that hurt a bit. For some of us there isn't much choice. My mother is nearly 200 miles away (so not as far as Scotland). At present I manage to go up every 4-6 weeks. It would be a bit difficult to go daily or even weekly as I am self-employed, the main income earner, and have children who are still at school. I'm also on tax credits as we have a low income so cost is an issue, but I will happily increase my debts if necessary to go and see mum. Moving her is not an option as she is not yet at the stage where a care home could be considered, and she always said she would never put me in the position she was in having to care for her in-laws who lived with us from when I was 4 1/2 till my early 20's (and they didn't have dementia). With me working it simply wouldn't be possible and I can't give up my job. I really admire people like yourself who are 24/7 carers, but I have to admit I simply couldn't do it no matter how much I love my mum. I did wonder why Sue didn't move Ethel to a home nearer to her as if she has no family / friends in Scotland and Ethel doesn't recognize her daughter most of the time it would be less of a problem. My mum has no rellies near her and I'm an only child, but she does have friends who will (at least until she gets too bad I suspect) continue to visit and take her out. Perhaps there are circumstances not mentioned in the film as to why Ethel still lives in Scotland.

I too cringed at the harsh words Sue used towards her mum in the car, but perhaps that's because it reminded me too much of the disagreement I'd had with mum last weekend over her fibs about food. She often gets on her high-horse saying things like "I can't abide liars" and I remember saying something like "If you can't stand liars why have you become one?" She looked upset and I was almost pleased that she was because I felt that perhaps I'd got the message through to her.

I don't think Sue and Holly were being intentionally disrespectful to Ethel in their general banter, I think that's just the way that particular family communicate, perhaps in order to deal with AD. To some that will seem horrendous, to others it will seem normal. There are other cultures where 'joking' relationships between particular members of a family are the done thing and where you would be 'abnormal' if you didn't behave in that way. Each to their own as they say.

I wonder whether Sue will continue to film Ethel when she does, inevitably, begin to decline further. I was suprised when I heard she had been at that level for 3 years. Is that unusual? Ethel came across as a lovely lady and as Sue said her relationship with her mum hadn't always been so jovial she is lucky that she has got that film (warts and all) to look back on to remind her of the times she had fun WITH mum.

Just my thoughts at this rather late hour of the day.
Chris

 

[Margaret W]

Help please

It is obvious that this programme has caused a lot of controversy. I would like to see it, but I have not a clue how to do it on my computer. Can someone please advise? I am totally non-technical.

Regards

 

[Brucie]

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.

Firstly, welcome back Helen - I have not seen you around for a while and the words you write are spot on, for me.

I felt uncomfortable witnessing their emphasis on Ethel's shortcomings, her accidents, her muddled memories.

yet if somebody is not brave enough to show this, dementia will remain forever 'forgetting things' to the population at large. The telling part was where Sue explained her Mum had forgotten how to blow her nose - most people think it is just a case of misplacing keys....

I don't see how this film, in anyway, can help carers, but maybe I've missed the point

I think the point was to help those who are NOT carers to understand what living with dementia is like.

Seeing your parent (Mother) once a month.
And a phone call once a day.
And to keep telling that person they have alzheimers.
You call that love ?

actually, yes, in the circumstances. Don't forget that this is mother/daughter - you are [like me] spouse and living in the same area. Sometimes people do live apart for good reasons, and it isn't practical or possible, or affordable to visit more often than once a month.

Some people live a few streets away from their parent with dementia and never visit at all.

My Jan's family have not visited her in 6 years, yet they say they 'love her to bits'

It is not about money, Barb.

Sue could have got the point about incontinence across without subjecting her mum to the indignity of being seen by maybe millions of people with her knickers round her ankles

I agree that part was difficult.

However, the film was not really made so carers could all sit around comparing this or that, and feeling good or bad about the way they themselves approach the challenges of dementia - it was about trying to show others not in a caring role what everyday life is like. To say there are problems toileting, or there is incontinence just drifts over most people's heads if they have not seen it.

Until you have needed to clean up, to be there with them in the loo - it doesn't sink in. For my part, I can't see any other way it could have been done.

We don't live in a dignified society. Many are quite happy to see children [aka 'young adults'] out in the streets till late, drinking, and all the rest. I had read about it, but it wasn't until I happened along Wind Street Swansea on a Saturday night that I saw what true indignity is. Full of young people plastered at 8pm, sick in the gutters even by then. Or Kingston upon Thames riverside - pretty much the same thing.

Many people with dementia are more dignified on the toilet than these people out on the streets, or in their everyday lives.

I'd be reckoning that the contributors to this thread will never agree on the film, but by golly, it has us talking!

If only those not already in caring roles would do that - THEN we might get something done.

 

[Amy]

Thanks for the welcome Bruce.

Many people with dementia are more dignified on the toilet than these people out on the streets, or in their everyday lives.

Think thats what i wanted to say...but didnt have the nerve. Going to the toilet...being incontinent is not degrading....and i believe that we shouldnt think of it as being degrading...just part and parcel of illness.
Helen

 

[Brucie]

Members make good points, of course....

Sue could have got the point about incontinence across without subjecting her mum to the indignity of being seen by maybe millions of people with her knickers round her ankles

I have to admit I found the bathing and soiling scenes etc unecessary

Give me a camera please I swear I'll do better

The question I would ask is - "so how would YOU bring that aspect across to a TV audience in a film you were making about your loved one - in a way that would register in their heads?"

For sure, if there is another way, then film makers should be using it!

We would all agree on that, I believe.

 

[Grannie G]

Please allow me to make one more plea to those who feel this programme shows truth, and should be viewed objectively.

I have every sympathy with long term carers, and have personal experience of a wanting mother/daughter relationship, but if this film had substituted Nursing Home Carers for the daughter and granddaughter, everyone would have found it unacceptable.

 

[daughter]

I'd be reckoning that the contributors to this thread will never agree on the film, but by golly, it has us talking!

If only those not already in caring roles would do that - THEN we might get something done.

To follow on from that - I just wondered if are there any people out there who are not in a caring role, who watched the programme, were interested enough to seek out this forum, and are now reading this thread? If there are, would they now like to join in and give comments, ask questions, find out more about dementia? Bruce - is there a section of TP that would be the place for this sort of discussion? If such people exist then it might be nice to welcome them!

 

[Brucie]

Hi Hazel

great idea - I can't see a problem in using the current thread in the Support area- Tea Room wouldn't really be the best place in my view.

I don't know anyone not involved with dementia in some way who saw it [and one wonders, did anyone of that ilk watch it?] so it would be good to get some views.

Hi Sylvia

but if this film had substituted Nursing Home Carers for the daughter and granddaughter, everyone would have found it unacceptable.

I appreciate your concerns - but the point of the film was that it WAS a daughter and grand-daughter who were with her. Families have their own ways of addressing all things, partly to enable them to come to terms with dementia in a much-loved mother/grandmother.

In their case, clearly humour was the way they did it, and I didn't see it as cruel humour - neither did Ethel.

My only objection in the film was the use of gutter language within the family, but then that's my upbringing. Every family is different.

 

[Margarita]

In their case, clearly humour was the way they did it, and I didn't see it as cruel humour - neither did Ethel.

That in your perception . They was a part when they where on a street sitting on a bench, daughter telling her how no wanted to care for her , Ethel come across as always having a passive personality Then in the care home when Ethel wondered why she was crying , someone can only cover sadness with so much humor to the point it has to come out so it come out in tears . people with dementia do have feeling .

God the upper class society , use to lock people with dementia hide them away in the attic. clearly Ethel was middle to upper class so in my perception I believe that in there class of society its normal to use be so disrespectful, dismissive to someone feeling if they have a mental illness Cover it all with black humor , BBC love the middle class upper class way of showing up people disability on TV.

 

[Margarita]

In their case, clearly humour was the way they did it, and I didn't see it as cruel humour - neither did Ethel.

That in your perception . They was a part when they where on a street sitting on a bench, daughter telling her how no wanted to care for her , Ethel come across as always having a passive personality Then in the care home when Ethel wondered why she was crying , someone can only cover sadness with so much humor to the point it has to come out so it come out in tears . people with dementia do have feeling .

God the upper class society , use to lock people with dementia hide them away in the attic. clearly Ethel was middle to upper class so in my perception I believe that in there class of society its normal to use be so disrespectful, dismissive to someone feeling if they have a mental illness Cover it all with black humor , BBC love the middle class upper class way of showing up people mental disability on TV with black humor . Has anyone seen that done when someone has a cancer , I don't think so .

 

[Bristolbelle]

I would do better.....

Brucie in answer to your question how would I do better, for a start I would be less materialistic so long as sufferers are clean and dressed who cares whether they are wearing ghastly green or putrid purple ( I actually thought the twin set was quite nice for an older lady). After all I didn't think Sue looked like a basket of fruit in that awful handkerchief skirt and a denim jacket - but hey she was only walking her dog so no pressure to dress up there. Also why worry about knifes and forks - happiness is the main aim, if the caree is happy and you can keep their mood light it will help your mood too. I'm sure with a polite phone call many places would make provision for her to take Ethel to a restaurant and find something she can eat easily with her fingers. Standards are all very well when people are able to attain them but we should not make others lives miserable by expecting more than they can cope with. Half the time all poor Ethel wanted was to sleep, and yes a AZ needs stimulation but the constant battle to try and straighten out their thoughts tires them as I know you are aware.
As for the bathing and toileting scenes yes they could be filmed and some of these shots were good - showing Ethel from the shoulders up in the bath etc - though I think they went too far showing Ethel on the toilet with her knickers around her ankles. however the commentary should have been a LOT more sensitive maybe actually explaining that because of the way alzeimhers works many people become incontinent. Bear in mind Sue was a PROFESSIONAL documentary maker and therefore should have been well ware of how to present useful sensitive information in a way that was both striking and dignified. Perhaps as she was lifting Ethel she could have mentioned that the had tried bath chairs or lifts or that they could not loan one as they were in a hotel - it would have served to show why many hotels remain inacessible to the disabled. For someone of her position she appeared to know very little about the condition and I believe her ignorance contributed to her insensitivity to some degree. I wonder if Sue showed this to friends etc after final editing to "test the water".
How can we apply disability discrimination laws and stop the verbal abuse of the disabled when it is so rife in ones own family. My kids have been verbally abused by outsiders most of their lives because of their disabilities, if this is being taught as acceptable in the home then no wonder. Holly is not used to being respectful so what if she showed similar behaviour towards another person in society - because if she did it to my Mum I'd probably slap her! But it would not really be her fault as she knows no better.
One thing I can tell you is that our family was in a 'fly on the wall' documentary and it is a very invasive experience the 'flies' tend to be hulking 6 footers with huge light and camera stands. The programme we were featured in was something my son very much wanted to do at the time but has regretted since even though it showed him to be a caring sensitive young man. passers by pointed and called out for weeks not all supportively, some accusing him of being a wuss etc, so I do not envy the feedback Sue or Holly are likely to experience from this. They shot at least 30 hours of film and in the final piece he was on for about 20 mins of a one hour documentary, so there must have been a lot on the cutting room floor, and I feel some of this would have made much better viewing.

Anyway even if it were my wish to film something like this I know my Mum would not give knowledgeable consent oddly enough we actually discussed things like this when she was in the early stages so I had a pretty good idea of what her wishes would be later on.

 

[KatsWhiskers]

My thoughts on that film

Hi

I thought it was a dreadful film . The way the daughter and grandaughter behaved ; the swearing was totally unnecessary; and it was as if they were 'just taking the mickey' out of a person who used to be a very dignified lady.


Why on earth didn't they move the lady nearer London where the daughter lived ?

The poor lady wasn't happy - she was confused.

Why was the lady allowed to lay in her own urine or worse in a "Care" Home ?? Not once did I see any nursing staff. The daughter and grand daughter just walked in without speaking to anyone. Did this mean tnat anyone could of done so ??

Mary
Full time carer to Mum

 

[Tender Face]

For ChrisH

Chris, I see you felt hurt by a comment of Barb's which was actually mine I believe so I would like to offer an apology.

Chris, my comment reflected on Sue in the programme and the attitude she gave (which sadly I've found over the years not uncommon amongst acquaitances). I KNOW how hard it can be caring for a parent - I've only been five minutes away from mum and even I beat myself up that I cannot afford to give up work to do more than I can... (between beating myself up I get my family priorities wrong etc etc!) and given I cannot find one care home locally that comes up to the standards anywhere near those some people enjoy and I would expect for my mother (indeed anyone) I may have to look at mum being further away and visiting less often if we come to that ...

We are all here on TP BECAUSE we care so much even if our means of doing so are different. It breaks my heart to read here how some people have the agonies of these logistics and no way to circumvent them - only for this programme to show almost 'flippancy' about the situation ....(IMHO).

Love, Karen, x

 

[candymostdandy@]

i am absolutely shocked at the level of negative feed back that the programme has received and especially the daughter and granddaughter.


I don't these days very often even browse the forum what with mum's deteriorating condition and looking after her 24/7 I just don't have the energy.

But after watching the programme the other night I wanted to see what the comments would be.


Mum lives with me and my family ( but I certainly wouldn't criticise the daughter in the programme for visiting once a month), and mum's condition has deteriorated hugely especially in this past year, double incontinence, lack of mobility, and with a memory score of 6 back in January.

Having said this she still recognises family members even on the phone, she is not able to carry on a conversation but talks non stop all day every day...but nothing she says is relevant, etc etc


From the moment I go into mum's room in the morning, she is ranting and raving, the carer arrives to wash and dress her, mum swears and curses the carers, shouts at them, verbaly abuses them, once she is clean and dressed she thanks them and starts singing to them...

When you try to help her get up, she swears that she is being pulled, I stop her from sitting herself on the floor as she is misses the chair seat, and she shouts and curses me,....

how could I carry on if we (my family) and mum included did not have a sense of humour...at times I do wonder what an outsider would think if they heard some of the things and me and my mother say to each other.... but we are mother and daughter and its over and done with as soon as its said, just as it was before she became my " child."

Over the past 2 1/2 years we have cried, we have cursed, we have sworn, but mostly we have laughed, and the laughter gets all of us through each day, infact each moment..
of each day....

We are all just humans not saints trying todo the best we can in our own circumstances, I just feel sorry for Sue and her daughter for receiving so much negative feedback