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

[Brucie]

Celebrities and the rest of us.

For my part my view is that the more people of any type that we have on board, the better.

I can't see any conflict in a multi-front approach.

It is my reckoning that nobody, famous or not, gets involved with anything to do with dementia until it hits them or their family, or someone they love.

The more different angles, different experiences, different working practices, the better.

 

[andrear]

I thought people on this site were supposed to be supportive of carers of dementia patients. I am disgusted at the criticism of Sue and Holly - they are managing as best they can in a situation which I for one can empathise with.

OK they had the resources to share their experience with the rest of the world via the film and I admire their honesty. Dementia is always disrespectful, to the people who have to deal with it as well as the sufferer. Dementia sufferers are not all "lovely", some of them were horrible before they got ill, and don't improve as the illness progresses. Let's stop being over sentimental - people cope with their ill relatives because they have to, because they love them or because they feel it's a duty. Nobody does it through choice. Sue admitted that she and her mother had not had a good relationship over the years - who can say if she now feels resentful of all the time she has had to spend visiting her mother, especially when coping with her own ill health.

My mother was controlling and mean with me when I was young and is increasing stubborn and awkward in old age. She has dementia but still lives alone, and refuses any help from Social Services, Age Concern etc. I admit that I do not want to deal with incontinence if it gets to that stage. Am I deserving of the same criticism that Sue got? I wish that I could laugh with my mother like Sue and Ethel could - I'd rather jokingly call her a daft old bat and admit she's got AD than the pretence I have to put up that all is normal.

Could we have a bit more tolerance please, and if you are giving total devotion to your dementia sufferer, please show a bit more undertanding for those of us who can't.

HI Rose of York

Sorry, but I disagree, we all have a choice - we can walk away anytime we like, but because we love our parents, partners etc. we don't take that route. We are not duty bound to support them but I certainly could not walk away.

I look after both of my parents, and I do not and could not be disrespectful to them in the way the daughter and grandaughter was to such a lovely lady. Yes, I may feel like letter off steam but what good would come of that? For me, I'd just come home with more bruises than I normally come home with. My dad is going through a very aggressive stage and I am on the receiving end and I am just so glad thats it me and not my mum.

My parents get no help either - why, because my dad will not allow anyone into the home, not even the GP, its like a prison, but at least they are both safe when I leave.

You are obviously having a very bad time at the moment so please tell us about it and let us help in any way that we can.
Andrea

 

[andrear]

For my part my view is that the more people of any type that we have on board, the better.

I can't see any conflict in a multi-front approach.

It is my reckoning that nobody, famous or not, gets involved with anything to do with dementia until it hits them or their family, or someone they love.

The more different angles, different experiences, different working practices, the better.

I totally agree, but lets not put him on a pedestal.
Andrea

 

[Brucie]

I do not and could not be disrespectful to them in the way the daughter and grandaughter was to such a lovely lady.

Hi Andrea, my own feeling is that this family, not unusually, has always talked among themselves this way. It is their norm and if so, then what they said was not disrespectful in their context.

Their norms may not be your norms or my norms, but if that is the norms for the household, and it works for them, then it is fine by me.

Arguably, if they always were like that and suddenly changed that because the grandmother has dementia, then that might make Ethel anxious.

There are no absolutes here, I think, and everything is relative to particular considerations.

just my thoughts.

 

[Tender Face]

For Rose of York especially

One thing that struck me in the programme was Sue's declaration that she was finally experiencing a 'falling in love' with her mother. (sorry, didn't tape it so can't give the exact quote). As some one else who hasn't always had the easiest of relationships with my own mother over the years I really did identify with that. Whether it was mum's sudden vulnerability - the fact she finally 'needed' me ....... the change in our relationship since dementia was first mooted has been extraordinary ... maybe for some people that happens and for others it doesn't ... and certainly my idea of what 'falling in love' means appears different to Sue's ..... other times I've felt begrudgingly 'dutiful' ...... guilty, then 'in love' again ...... and so it goes round .....

Rose of York ..... it surprised me recently how many of us caring for a parent 'admitted' to much the same .... (and sorry I can't remember the thread otherwise I'd post the link - sure someone will). Certainly for me this disease has bred anger ... not just for what is happening to mum - but things about our relationship in the past which I had thought were long buried ........ sadness, despair ..... oh - and yes - a very important need to maintain humour ....... even if others see that coping mechanism as inappropriate at times ... if it works for you, use it ...

I feel I am echoing some of Bruce's sentiments on the thread in terms of 'each to his own' ......(if I have read that right, Bruce?) .... this is hell on earth at times and any which way a sufferer or carer or family copes perhaps should be applauded? I am still unhappy about the programme ..... but 'casting the first stone' springs to mind? I can be guilty of that one too, at times.

Take care, love, Karen, x

 

[andrear]

Hi Andrea, my own feeling is that this family, not unusually, has always talked among themselves this way. It is their norm and if so, then what they said was not disrespectful in their context.

Their norms may not be your norms or my norms, but if that is the norms for the household, and it works for them, then it is fine by me.

Hi Bruce
Yes, you are so right, perhaps I am reading too much into it, I don't really know, it just seemed so awful the way in which these so called siblings spoke to what I saw was a lovely lady.

I just feel that dementia brings out the worst in people and perhaps if the daughter was to read what has been said on this thread she may feel differently towards her lovely mum but then again perhaps not.

Its just a bit too close to my heart this thread and I would feel so ashamed if anyone thought it about me.
Andrea

 

[Skye]

I would feel so ashamed if anyone thought it about me

We don't Andrea, we know you too well!

Love,

 

[Nutty Nan]

I don’t wish to talk this subject to death, but whilst I understand that pictures are the most powerful way to get across a message, I just wonder whether any of us would be prepared to ‘use’ our beloved husbands/wives/parents as a ’tool’ to make the world understand.
I feel incredibly protective towards my husband, and instinctively try to ensure that as little as possible of his vulnerability is exposed (in these late stages, this is a totally futile mission!). I certainly would not want the general public to witness his problems (lack of dignity) without being able to give extensive explanations of our journey through/with Alzheimers. I can't see how Ethel could have given informed consent to the film being shown, and wonder how Sue would feel if the roles were reversed.

I am not convinced that Sue’s prime motive for her documentary was to broaden public understanding of dementia. Some of it seemed rather self-gratifying. She may want the public to know that Alzheimer’s is not jus a case of forgetfulness (I would share that goal with her), but I don’t see why she should have drawn her mother’s attention to all the things that were wrong. I am all for validating someone’s feelings. But Ethel did not say she felt sad – she actually said she had nothing to be sad about!!!

 

[alfjess]

Hi

Sorry to be cynical, but does anyone know how much Sue was paid to make this documentary?

Maybe I am being too blunt, but I would never expose my parent's like this, for "All the Tea in China" as the saying goes.

At Ethel's stage of dementia, I could also have a laugh with my parents, but would not have used them.

I still cannot see what benefit this documentary can be to anyone. Carers or not.

If one is not a carer and doesn't know any better, it is giving out the wrong message.

If one is a carer then, hopefully like me, we would never use our loved ones in this way.

Sorry if I have offended anyone, but this is only my opinion

Alfjess

 

[Grannie G]

You have not offended me Alfjess.

 

[Margarita]

Nor me
Alfjess

 

[j.j]

watched film first time tonight and felt uncomfortable with some scenes, but hey altzheimers is uncomfortable, came on tp and read posts and was quite shocked at the negativity, just watched film again but without sound and fast forward to catch the end and in doing so witnessed lots of smiles fun and laughter. Watching Ethel becomining more vague and lost as time passes was very sad and it is NOT the way i would ever speak to my own mam who is very much like Ethel but if that is how they are then so be it. I feel devastated by this disease but when reading many posts envious of the way mother and daughter could still relate to each other i am grateful that i can still find a smile on my mams face when we go out.I am struggling with it all but to those further on my heart goes out to you.

 

[citybythesea]

I wish I had access....

Being in the US I did not see this documentary, but I have read with great interest. Someone brought up about using their own parent to bring to the public eye knowledge. I would...but you wouldn't see the "rude" side. I think more so it is imprtant for everyone to understand that while what she has produced may have been distasteful, may have paid off a mortgage..or whatever..or may have been done for free. She did one thing and that was to make people aware of what Alzheimers is like. She may have not brought a total truthful side since all of us don't have the same experience..but maybe she did manage to make the general public aware...I would aplaud her if good comes from it. I think tho' that what you or I may think of her does not matter as the people who know and care for her mother and who also know her will only see the show as they have already seen her. (I hope that made sense.)

I watched a show with mom today...a line from it was...the first step to healing(mentally) is to know that you are being affected by the tragedy.

Hugs

Nancy

PS. Am searching the internet for this show...would just like to see for myself.

 

[Skye]

Alfjess, I was so pleased to read your post.

I was beginning to think that the discussion had polarised into the senior citizens caring for a partner, who were by and large horrified by the programme, and younger members caring for a parent, who thought it was OK. (Maggie, Andrea, Karen, and maybe a few others excepted -- sorry if I've missed you!)

What I'd like those younger members to do is fast-forward 20 years, and imagine that thay are suffering from dementia (heaven forbid!). Would you like your memory loss and incontinence to be shown in graphic detail on national television?

Would you like to be told that that you are in a NH because no-one wants to live with you? That you have to sit in the back of the car with the dog because you smell? That everyone who loved you is dead? All no doubt true, but cruel nonetheless.

How would you feel if a carer in a NH said those things to your mum?

I know it's hard, and I've frequently said on this forum (but I'll say it again!), I think it must be harder for a son/daughter than for a partner. But I still think Sue made it harder than she need have by not bringing her mum closer, and by trying to pack too much into her monthly visits.

 

[Margarita]

Hi Bruce
Yes, you are so right, perhaps I am reading too much into it, I don't really know, it just seemed so awful the way in which these so called siblings spoke to what I saw was a lovely lady.

Your right andrear it does look awful when we are looking from it from out side the daughter box she live in with her mother, may be she does not even realize that she even doing it .

I think you have to be strong person to take criticize (sp) in a positive way, but that expected when you put yourself on TV to be criticize.

On BBC1 yesterday Point of views they showed the clip where the Mother was crying with the daughter, it was an emotional moment , but I could not connect to it, because of what the daughter said .

They said 2 people had wrote in . both reviews where positive , as they cared for people with a dementia how real to life it all was .

2 people views could not believe they only gave 2 people views compared to how many views where given to other programs that got so many views .

( they should of come into this thread )

May be it was because, dementia is such a sensitive issue with carer , that they only pick out the positive reviews .

 

[rose_of_york]

HI Rose of York

Sorry, but I disagree, we all have a choice - we can walk away anytime we like, but because we love our parents, partners etc. we don't take that route. We are not duty bound to support them but I certainly could not walk away.

I look after both of my parents, and I do not and could not be disrespectful to them in the way the daughter and grandaughter was to such a lovely lady. Yes, I may feel like letter off steam but what good would come of that? For me, I'd just come home with more bruises than I normally come home with. My dad is going through a very aggressive stage and I am on the receiving end and I am just so glad thats it me and not my mum.

My parents get no help either - why, because my dad will not allow anyone into the home, not even the GP, its like a prison, but at least they are both safe when I leave.

You are obviously having a very bad time at the moment so please tell us about it and let us help in any way that we can.
Andrea

My point precisely - you say she is "lovely" but where is the evidence - Sue's past experience MAY have been different?

I am not having a particularly bad time at the moment, but I am trapped in a situation which can only get worse and which may go on until I am in my 70s. The only help I need is for somebody else to take a little of the responsibility for my mother, but this will not happen unless she deteriorates considerably. So you see I feel guilty for even wishing it. If my mother got a bit of help now she would be more likely to be able to cope at home for longer, which is what she wants most, but of course she refuses everything so only a crisis could change anything, and that is what I dread the most. And so on......but whatever I'm not prepared to be a martyr.

 

[alfjess]

which can only get worse and which may go on until I am in my 70s. The only help I need is for somebody else to take a little of the responsibility for my mother, but this will not happen unless she deteriorates considerably. So you see I feel guilty for even wishing it. If my mother got a bit of help now she would be more likely to be able to cope at home for longer, which is what she wants most, but of course she refuses everything so only a crisis could change anything, and that is what I dread the most. And so on......but whatever I'm not prepared to be a martyr.

Hi rose of york

Could you use a little "confabulation"? ie. Have carers come in and you introduce them as your friends, come to visit Even if at first they do nothing other than keep company and slowly, slowly start to provide care.

This is the way used, to get Mum to accept care. Of course it depends on the type of carer, allocated. Have they enough patience, understanding, time, to give, to win a dementia sufferer's friendship?

Only my suggestion, but there is nothing wrong with "white lies" if it brings the correct outcome.

Take care
Alfjess

 

[TinaT]

Dear Rose...

Good on you girl. I hate the smell of burning martyr!! Much as you don't want a crisis, sometimes it is the only way you will get help and be able to see any sort of light at the end of the tunnel.

xxTinaT

 

[andrear]

My point precisely - you say she is "lovely" but where is the evidence - Sue's past experience MAY have been different?

I am not having a particularly bad time at the moment, but I am trapped in a situation which can only get worse and which may go on until I am in my 70s. The only help I need is for somebody else to take a little of the responsibility for my mother, but this will not happen unless she deteriorates considerably. So you see I feel guilty for even wishing it. If my mother got a bit of help now she would be more likely to be able to cope at home for longer, which is what she wants most, but of course she refuses everything so only a crisis could change anything, and that is what I dread the most. And so on......but whatever I'm not prepared to be a martyr.

When I said 'lovely' it was what I saw when watching the programme, and yes I'm sure the daughter saw it differentely.

I understand when you say your are trapped, I too am trapped in this nightmare. Do you have any brothers or sisters who could help out? I have a brother, but he made it known from day one that under no circumstances would be get involved and 3 years along he has never once helped out.

You are doing the best you can in the situation that you find yourself in as I too am doing. And, no I'm not prepared to be a martye either, but we have to keep on going and for me the guilt will no go away, yes, I have really bad days when I have some awful thoughts but I just have to keep on going and its only by talking (in my case to a counsellor who specialises in AZ) that I feel able to get up and go each day.
Andrea

 

[Canadian Joanne]

Originally posted by Skye
I know it's hard, and I've frequently said on this forum (but I'll say it again!), I think it must be harder for a son/daughter than for a partner.

That's really interesting, Hazel. You're caring for your husband and you think it's harder for the children, I'm caring for my mother and I've also frequently said I think it's much harder for the spouses. I DO think it's harder for spouses. Look at yourself and others here - it took an incredible crisis that forced you to let go. You were told John would keep getting sick if he stayed home and you essentially had to let him go into care. I am positive if you had seen one sliver of a possibility of keeping him home, you would have. I know you.

I think it is harder for spouses because, as children, we know our parents will die before us. AD certainly isn't the way anyone would choose, but the fact is that in a normal course of events, our parents die before us. With a spouse, I don't think it's the same. I can't even imagine my spouse dying before me - I guess it's a protective mechanism we have.