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

[Brucie]

Hi Margarita

well there's a thing! I normally agree with most of what you say... however

That in your perception

as of course is the opposite view from your perception.

Truth is Margarita, we can't really know without being with Ethel for a considerable period to read her communication.

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.

I really don't think it worth diverting the discussion into a class thing, based on prejudice and perception, not facts.

The lower classes [well, if you use upper and middle then there must be lower] don't have any better record.

People are people. Some are good, some are bad. Regardless of background and upbringing. Most are somewhere in between and hopefully, trying to improve.

As a TP member I try not to read things that may in reality not be there into a film like this. Dementia breeds anger, but I think that is best focused away from brave people like Sue who try to illuminate what their live have become.

 

[Sharon G]

I think the negative response is entirely justified. We all struggle in our own ways to cope with caring for loved ones suffering from this appalling illness and we also struggle to raise its profile; encourage investment in research, increase the level of help and support for carers within the home, and encourage the introduction of mandatory training for care staff in nursing homes.

If it is acceptable for relatives to abuse, bully, humiliate and exploit dementia sufferers then how on earth can we expect society to behave any differently? Sad but true. The programme served no useful purpose other than to highlight Sue's, and her daughter's, ignorance and total lack of empathy.

 

[Splat88]

I must admit I've been a bit surprised by how judgemental postings have been. In my personal experience, and it is just that, those of us who read and post on TP are only too aware how different each AZ sufferer and each carer is, and for me its whatever gets you through the day.
I'm not always happy and sunny, neither is Mary. Some days we laugh together, some days we bicker, life's like that.

I know I'm with her 24/7 and I have my own demons about letting her sit and vegetate, "not really interested in doing anything, I'm too idle" etc etc . I wish I had more perseverance like Sue obviously has.

Maybe Bruce is right about the toileting,bathing etc. Mary hasn't quite got to that stage, and I take the point about visuals being more hard hitting than words.

I hope if nothing else, it gets across that logic and not only memory are affected. I know my sons watched with interest, they were surprised at how cheerful Ethel was, and how biddable.

My eldest picked up on the blowing the nose bit, saying well she must be worse than nan, forgetting completely all the continence issues!!!!

Incidentally, fingers crossed, Mary has been on an even keel with only a slight deterioration for the last 5 or 6 years. Its only me that deteriorates!!!!!

 

[Margarita]

we also struggle to raise its profile; encourage investment in research, increase the level of help and support for carers within the home, and encourage the introduction of mandatory training for care staff in nursing homes.

Sue's, and her daughter's, ignorance and total lack of empathy.

May be that Just it Sharon .Yes Sue was brave to show her true self & how life is with AZ in her reality of it

so it is highlighting the total lack of empathy ignorance when it come to AZ ,like you say. I believe its because of the lack of help & support from a trained person in dementia for the carers , so they get more insight it , & not from only reading a book or on a web page on the Internet.

A skilled trained person in dementia can show the carer they skills in how they handle someone that is showing challenging behaviors & the reasons behind it , so not to trigger it

All the agency carer I have , have had no training in dementia

I have had carers that can set of my mother verbal abuse when they washing her in a hash way, but they never admit it the way they handling my mother, but then I have observed that when a carer that washes my mother in a way that is showing empathy understanding to dementia in a positive way it does not set of my mother verbal abuse



I firmly believe that when someone with a dementia swears at you it’s because of they own frustration anger that they are feeling within themselves , what in they own perception they do not like what someone is doing to them . the only way to express it is to get verbally aggressive with the language, because they have lost the communication skill to express it in a more contractive way

My mother use to be the same verbally aggressive then she would sing a song after wards, strange how people with dementia show many of the same symptoms it cannot be a coincidence as if you read many book on dementia it says the same thing .

My mother would also complain that she was being pulled when I try to help her up , so would push me away in a dismissive way with her hands saying she do it herself . then the OT came around showed me how to do it in a way that my mother felt that I was not pulling her when I help her up & in a way that it would not also hurt my back. Since then I have had no complaint from my mother when I help her up .

Bristolbelle 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.

I agree with that also , well said

 

[Amy]

Totally agree with you Candymostdandy about the negative feedback.....

IMO Holly was not disrespectful to her grandmother...how wonderful to know that your 18 year old granddaughter loves you despite the illness..how wonderful that an 18 year old is prepared to make that journey and support her mother and grandmother...she was obviously used to having to share some of the physical work of dressing and toileting. How fantastic that an 18 year old wanted to laugh with her grandma, and snuggle up on the bed with her, wanted to get close despite the fact that they had already said that there was often an 'aroma'. How the love shone through.

And the scene when Ethel was depressed...was Sue rubbing her nose in it? No I saw it as validating her mothers feelings....saying yes she had every right to feel sad, and helping her mother to express things that maybe she could not verbalise herself. Maybe not the way we would have dealt with it...or maybe it was.....but it made Ethel laugh.

What didnt the documentary show?....it didnt show Ethel being walked away from when she became irritable and difficult....it didnt show Ethel being hit when her carer got to the end of their tether. Just imagine the outrage that would have caused....but it happens....and does that make the carer a bad person...no, just a desperate one, trying their best in a bad situation.
Just my thoughts.
Helen

 

[Mameeskye]

I am glad that more people saw some of what I saw in it.

And the scene when Ethel was depressed...was Sue rubbing her nose in it? No I saw it as validating her mothers feelings....saying yes she had every right to feel sad, and helping her mother to express things that maybe she could not verbalise herself. Maybe not the way we would have dealt with it...or maybe it was.....but it made Ethel laugh.

Helen, I thought the same thing at the time as you, that it was a way of validating why she should feel this way.

I have also been shocked at statements of "once a month" not being enough. If I was not tougher-skinned and so sure of my love for my Mum and my Mum's love for me this could have been suffient to upset many many carers.

A trip once a month of 500 miles or more round trip, taking children away from friends, using annual leave, maybe on top of already working full time. If not taking children with you finding alternative care for them, maybe at the expense of your partner, dealing with work and finding a job to help your family to eat that fits in with this, dealing with the exhausting job of being a parent to children and giving them a future and stability while maintaining a relationship and genuinely feeling guilt becuase you are not there.

Being torn apart everytime you leave your relative. Not moving them closer because you know their care is good, it is not what they want, to be removed from surrroundings and accents and scenes that are familiar (I wanted Mum to move closer to me, she did not want to be "that remote" when she first needed care and had a valid say in where she was!)

Knowing in an emergency that you have to arrange care for your children so that they still attend school while you travel. BEing aware that if you are to move it is a life move and impacts on your entire future that could be 50+ years or more. Driving through the darkness, fearing the ring of the mobile phone hoping that you will get there in time, slowing for deer in the road.

Knowing as you leave you could be saying goodbye for the last time, knowing as you reach home that if the phone rings now then you have just no energy to turn around and drive 250 miles back, knowing that however much you care you cannot care for your Mum with toddler twins as it is just too dangerous for all parties concerned.

I find it hard that there are remarks that appear to judge without knowing this lady's entire life and other commitments. I have just given a flavour of mine and the fear that living this distance away gives.

I don't set out to offend, just to provide an alternative point of view as a young parent with the future of my children (and therefore of myself and , in theory, my mother) to consider.

 

[Skye]

Dear Mameeskye

Please don't take any comments on this thread personally. I know how much you loved your mum, and are still feeling very raw from her loss.

And please don't take that as patronising, it's not meant in that way. I appreciate how hard it was for you to watch the programme, and I value your comments. It's good to hear from someone at the 'sharp end', and I find your arguments very convincing.

I think what this thread has shown is that, although we are all dealing with dementia, the forms of dementia are many and varied, as are our own family situations. We none of us really know what other members are suffering.

I guess if another member had come to visit John and me a year ago, they would have gone away thinking 'I wouldn't have handled that like that!' The truth is that none of us know!

I'm also sure that if Sue had joined TP, described her situation, and confessed that she had lost her temper with her mum, she'd have received nothing but sympathy and support. She had the courage to show it on national television, while we remain anonymous.

Someone complained that many of the posts on this thread are very judgemental -- I hold up my hands, and will think again!

 

[CraigC]

Just jumping in with my point of view here.

One thing I have noticed over the years is that Talking Point attracts all types of carers and carers who deal with this difficult illness in such different ways.

Perhaps as has been said "you see one person with dementia, you see one person with dementia" the same goes for carers.

We all do things in different ways and we all care in different ways. I don't personally think my way is better than anyone elses, but all I can say is that it feels right for me. I ended up in casualty with a suspected heart attack early this year and that is when it hit me, I had to step back just a little. You live and learn. All fine now BTW, just a wake up call.

What we all have in common on Talking Point is we don't bury our heads in the sand. We all care and that is why we are here. That is what makes Talking Point a special place, everyone cares.

This programme has definitely generated some passionate and interesting discussion, but please it was never my intention for this thread to turn into a judgement call on how people care.

I'm ducking out now and hoping we can all be friends.

Kindest Regards
Craig

 

[Amy]

Now then Craig...dont go suggesting we watch any more programmes....we may decide to shoot the messenger!!

Mameeskye..thank you for sharing some of your pain...the dilemnas that carers who live at a distance face. All any of us can do is our best.

Love Helen

 

[lesmisralbles]

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 ?

As I said
If you have money to throw at a situation to make it go away, would you ?
I would suspect that in making this film, someone got paid ??
Making us aware of Alzheimer's, it did not do it for me.
We, all, on this site speak about what our hubby, wife, mother, father did, be it funny or serious. But I do not want you to see my hubby with his pant's below his knee's, or video the footage of his bowel movement's. We talk about what is worrying us that day, and ask for help from anyone who has been in the same situation we find ourself in.
We let off steam, we cry, we laugh, but most of all we are like a family. A family that you choose to join. Not one that is thrust upon you .
And there I rest my case.
You either choose to become a part, or you do not.
I, after watching Mum and me, would not want to be part of that family.
I would not degrade anyone in the way it was shown on TV last night.
If Ron want's to wear pink trouser's and yellow shirt, - well, get over it, if it makes him happy GOOD
In Cyprus, no one bat's an eye at Ron where we eat in the evening, he is greeted at the door, helped to his chair, that has been pulled out for him, chair is then pushed back toward's the table with Ron in it, napkin placed on lap, drink brought with a straw, because they know that is how he drinks. And when he has finished eating, the food on his lap is cleared in a dignified way. I am asked does Ron need the bathroom, and help is given.
I would never let anyone bar none hurt or insult my Ron. And I know, none of you dear people would accept anything less for your loved ones.
So why ? in the name of film making are some accepting this film ?
Barb & Ron XX

 

[Margarita]

OH Craig keeps posting them letting us know.

It’s good to air are views & I apologies to anyone if I have upset any one opening my big typing view on the programme, that was not my intention
I was not judging Sue in how she cared for her mother , I was airing my view in how I felt the programme came across to me . It’s good to have a good discussion. It’s just human nature

 

[LIZ50]

I too felt very negative after watching this programme - in fact, it irritated me so much that I turned off before the end. I felt that the general public watching this would not get a realistic view of dementia at all as there was so much laughter between the three of them and in real life it's not like that for a lot of us. I would give anything to be able to have a laugh and and a joke with my mum as we used to do but even though I care for her 24/7 I just don't have the 'magic touch' to make her laugh anymore. Maybe, I felt envious that the three of them still had laughter in their world of dementia and it made my situation even more poignant. It certainly didn't make me feel 'oh good a programme portraying the true world of dementia'.
Also, even when I'm feeling fustrated and fed up, there is no way I would swear at my mum because I still respect her even though she has become my child and I her mum. In fact, if I even raise my voice to her she becomes upset and tells me 'not to be cross with her as she can't help it'. My mother would be a nervous wreck if she had a daughter like Sue. To hear a daughter use the 'f' word when talking to their mum who is ill I feel is disrespectful, but then I'm probably old fashioned.
Still, we live and learn and I'm learning all the time where dementia is concerned.
Love Liz x

 

[TinaT]

I'm late posting on this thread as I've changed my broadband package and had 'teething troubles' but here is my 'twopence worth' of views.

There were some things I felt were worthwhile in the programme. Unlike other postings, I felt that the scenes where personal care such as toileting and bathing were shown did give the general public some insight into the daily, messy and distastful aspects of caring. Also it did reveal how helpless and vulnerable a dementia sufferer is and how much basic care is constantly needed. Ethel's privacy and dignity were invaded the moment that filming started, regardless of what scenes were shown.

Just to keep someone clean and tidily dressed is an enormous task which I do not think is often appreciated. Too often I've had comments from friends and relatives about how well my husband looks and how well he appears to be. He looks clean and well because of the enormous, exhausting input from myself - Now he is in a nursing home his good appearance is because of the tremendous hard work of the staff at the home.

The general public who have no knowledge of taking care of the needs of a severely disabled person do need to be reminded of the 'hidden' side of caring.

I did not personally like the daughter and grandaughter's sense of humour and was shocked by some of the things said to Ethel. I was so very impressed by the dignity and love Ethel showed to her daughter and grandaughter throughout the film. I do hope that the daughter does read some of our comments. She did no favours to dementia sufferers by using humour in a negative way towards her mother and set a very bad example in my opinion. It is hard enough to bear the ignorant comments which are often made by unfeeling and ignorant people who do not understand the destructive nature of this disease.

I would have liked to see whether the daughter took any active part in the Nursing Home itself during her visits. Perhaps the nursing home did not give her permission to film mum in the more general setting, rather than us being allowed to see only the bedroom. Did the daughter make any efforts to try to integrate mum into the general daily life of the home. Although it was the family's personal journey, as mum was in a care home setting, I feel that some acknowledement of this would have been valuable as it was obviously where Ethel spent the majority of her time.

xxTinaT

 

[hendy]

Dear All on thread
I am sure that if this programme was trying to raise awareness of dementia, the people who should have been watching it, probably werent. Instead, it possibly, reached out more to carers and sufferers. In which case, for a family to put up their own disabled mother as a subject in a documentary soap, shown on national telly, they should be (deserve to be) open to such a rigorous judgement. And they are getting it here on TP. I dont have any moral worries about that at all, as Barb said they are probably getting paid. If however, Sue were to post on TP with her experiences, I dont think either that anybody would judge her in quite the same way. I am sure she would feel supported and find friends.
take care
hendy

 

[ChrisH]

for Tenderface

Karen - I was responding to post no. 41 which was Barb so no need to apologise. This film has certainly produced something of a debate and in the end I think we'll all just have to agree to disagree. It's such an emotive subject and our experiences of AD (and life in general) are so different I doubt if any of us could produce a film that would be acceptable to everyone.
Chris

 

[Brucie]

Perhaps the nursing home did not give her permission to film mum in the more general setting, rather than us being allowed to see only the bedroom

Hi Tina,

you make a valid point - on the occasions the BBC has filmed Jan at her home, the instructions have always been to do it in an area away from other residents as they must not be shown on the film.

Jan has been shown because I have given permission on her behalf.

 

[andrear]

HI there

I've only just allowed myself to watch this programme - why? because I look after my dad who has dementia and my mum who has cancer. I gave up my job to look after my mum because it was obvious that dad couldn't do it by himself, that was 3 years ago and the start of the nightmare that I am living within to this day. My parents are not particuarly on the door step it takes between 45 mins to 1 hour to get there and back.

Yes, I could see a lot of similarities i.e. the frustration, but I would never wish to be so disrespectful to either of my parents in the way the programme showed the daughter and grandchild doing so to such a lovely lady.

I would at no stage allow anyone to see what I do on a daily basis i.e. cleaning up after both parents little mishaps (as we call them). Where is the dignity in that - for me I really do believe that what comes round goes round and perhaps the daughter should start to think about what her daughter would be like to her in such a similar situation.

I for one, would like the daughter to join us on TP so that she too can get the help that she needs and maybe then she could start to look at just how she is looking after her lovely mum.

One of my son's visit my parents each weekend for me to give me a bit of a break, and he comes back saying just how much he enjoyed seeing them. He takes dad out to buy his weekly lottery tickets and dad treasures the tickets so much even though he never wins, but its just the pleasure of going out with his grandson, who couldn't care less as to what grandad is wearing, what he says or does. Its just plain old grandad to him.

We all care for our loved ones in different ways, but we should all remember that it could be one of us that is being cared for at some time in our lives.
Andrea

 

[Laylabud]

Having watched this programme and read all the comments i have to agree with the majority, i found the programme in bad taste and poor Ethel having various things said to her was in bad taste. We have at time i am sure have said things to our loved ones we are not proud of but to film it was in bad taste.

 

[susiewoo]

Having read all the message board I decided to watch this programme on iplayer.
I've thought about it now for a few hours.

I feel slightly envious that they are able to do so much with Ethel. She seems to have retained her ability to converse in a fairly rational way and although she was obviously confused at times like thinking she was visiting her grandmother, I wish my Mum could respond as well.

So many things in the film I could relate to as well, like trying to keep Mum dressed nicely and having her hair done. Mum certainly wouldn't sit still long enough for a manicure!

I don't think I would film my Mum in the bath etc but I do think that the film showed the side most people want to ignore in including such scenes.

What struck me most was how much they touched each other and thats the best way of showing love especially when you think they're a bit smelly!

 

[helen.tomlinson]

Hi Bruce

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

I'm only half way through reading the posts and had to respond to the above. I think those who are not carers would have gained an easier version of how it can be. Before I became a carer I would have thought that looking after Ethel wasn't too bad. What would have been more disturbing would have been a mother who didn't have a sense of humour. A mother who couldn't talk so clearly. A mother who didn't show appreciation of one's efforts.

I do admit to only watching half the programme!

Love Helen