Difficult questions - dementia and ethics. Your thoughts needed!

[jc141265]

Regarding daisy2468's post

I think the key question here is, does the person come to harm as a result of posting material about them? Can I imagine in any way shape or form that my postings about Dad, have brought him into harm's way? Have they caused harm to anyone else?
And I don't just mean physical harm. Could Dad be disrespected by what I have posted about him, could he be mentally anguished by it? I have for example posted that he wear's nappies...is that exposing him to ridicule? If someone were to ridicule him for that, that person should be the one being ridiculed.
Mostly I am not posting about my father I am posting about what this disease does, he just happens to be the person affected by it. Are the millions of books on history unethical, when they discuss the personal lives and stories, personalities and deeds of persons in the past and publish photos of people also? Or is it no longer a question of ethics, once a person is dead? Or is the thing that makes history books okay, the fact that there is no longer someone to ask permission from?
As an ex-history teacher, such stories about people who can no longer give their consent for what is written about them, are things to be treasured as they teach us. So too what is written here on TP.
As an ex-history teacher I am aware that Queen Elizabeth 1 did not consent to what has been written since about her and I would be an uneducated fool to believe everything that has been written about her. I cannot judge her, I cannot assume to know why she did the things she did, even if someone with great authority has written why she did such things. I don't consider what has been written as unethical, I understand that it is simply opinion. So too what is written here on TP.
Daisy can you tell me what harm I am invoking by posting about my father? What harm would come of your posting about your mother? I am not asking that with a rude angry tone, I am just wondering if you can see a side to this that I can't? Or is it simply the fact that we can't obtain their full consent that is making you balk at the idea? My father can't consent to being dressed, my father can't consent to what he is going to eat today, what tv shows he is going to be subjected to, whether he is going to be seated all day, or whether he is going to be able to walk around. Most of the time now we make his decisions for him, and it would be unethical not to do so. A great number of these decision we make are for his own good, and no doubt that does no cause any ethical questions to arise, but there are also many decisions that we have to make for him that we simply make based on what we think what won't cause him harm, or that will cause him little harm but are for the greater good. Dad may not want to go into respite and it might even cause him harm, but we must make that decision. He may not want to go to the shops, but he can't tell us that, so he goes to the shops with Mum. He may not want to be seen by the people in his town, or he may want to...we have to make a decision based on who we knew him as when he could have told us what he wanted and who we think he might be now. So too what I post on here...
So I don't think one can make a broad assumption that it is unethical to post about our loved ones on here. It is definitely unethical if you believe that would be something that they would have abhored, and it sounds like that is where you daisy2468 are at and that is fair enough. It is also bordering on unethical (or is that just nasty, evil, mischief-making as someone suggested to me?) if you are posting on here simply because you get some personal kick out of it. And by that I mean, if you are posting on here for kicks using a sufferer's plight to get those kicks.
I think that you will find that the majority of posters, post because they are trying to cope and if they do manage to cope better because they have posted the good that does for their capacity to care far outweighs the harm that could be caused, which I cannot see. Many of us also post and tell our stories so that it can help others to cope, thats why this is a support network, again it does the group of sufferers far more good than harm, if others can learn from others' experiences. You might say, but some of these posts, there is nothing to learn from them, they are just exposés for the sake of talk and nothing else...but if it is helping the person cope, and it is not causing harm to the person who is being talked about...I ask again...where is the ethical dilemma?
As for photos...is it unethical to publish photos of newborns in the newspaper? Why not? Is it because no harm comes of it, that makes this ethically acceptable? Is it because their carers gave consent? It is because the photo is a celebration of someone who is loved...so too photos here on TP.
Well thats it for me, I believe I have gotten it out of my system now, back to the study books.
Thanks for your post daisy2468, I think it is important to question such things...goodness knows it got me thinking for the past 3 hours!!!
I believe however my conscience is clear.
And on top of that, methinks my Da would be proud.
(Note: My dad can't communicate in any consistent way so we are unable to know ever for certain what he wants or doesn't want)

 

[daisy2468]

I enjoyed reading your response, a lovely and kind and understanding response. Nobody knows what each individual is going through and I am sure I have a right to post my views without lectures just as others do. I am in a heartbreaking situation which involves people at professional levels and my darling mummy would not like her state revealed.

Even if the permission of the patient is given for intimate discussions with virtual strangers on this website, who knows that other family members could be exposed to this information and be uncomfortable How can you protect everyone?

As long as you remain anonymous, I believe it is ok, but when you reveal real names and pictures, I think it can be a little risky. ITs just my point of view.

I also believe that my mum would not be able to make a rational point of view about this subject, she has not got the ability and would just believe anything I told her.

Ethics are a subject which everyone finds a different level. I believe the internet can be a wonderful tool or a dangerous weapon.

 

[jenniferpa]

Even if the permission of the patient is given for intimate discussions with virtual strangers on this website, who knows that other family members could be exposed to this information and be uncomfortable How can you protect everyone?

Now that IS an interesting point. Now as an only child I didn't have the pressures that many people have: well meaning (and not so well meaning) family members who felt they had their right to put their oar in without fully understanding the situation.

I suppose it's human nature to have an opinion (see this post) and I suppose, intellectually, I can feel a certain amount of sympathy with someone who feels they have in some way been judged (by family members who have posted here) and been found wanting. However, what you have to understand, Daisy, is that for many of our members this is the ONLY place where they can feel comfortable discussing this, or even simply having a moan. And frankly, people who are taking care of a loved one, full time or part time, need that sort of outlet and I think it would be unfortunate if they felt they had to be circumspect about their situation vis a vis relatives "just in case".

It is important to note that with the exception of the moderators who are vetted by the society, you can't be certain just who anyone is on a board such as this. Because of this, posters should be aware that while we would hope that everyone is upfront about their situation, it is entirely possible that one or more may have relatives lurking, or even posting, incognito. So, I suppose, don't say something that you wouldn't say to someone's face, while at the same time bear in mind that people who listen at doors may be disappointed by what they hear about themselves. You seem to be advocating a situation where nothing should be posted that "might" upset a well relative, and I don't think that's realistic, although, as I've said before, we all have to make our own decisions about how much we post about our own situations. In other words - I don't think we have to try to "protect everyone", just those who can't protect themselves (and even that is going to depend on one's own value system).

 

[Alice Jarratt]

Copies of submissions

Alice, are you wanting copies of full submissions?

or not...

Hi there Brucie
Yes please! If anyone has full copies of submissions, it'd be great to see them: alice.jarratt@alzheimers.org.uk

 

[gigi]

Hello Alice,

I'm still looking at the questions..

It's apparent from responses here alone that ethics are a huge issue..

I can only speak for myself as the sole carer of my husband...

In simple terms..I look after him..to the best of my ability.

In ethical terms there may be those who would criticise..the fact that I choose his clothes, meals,open his post, make financial decisions, domestic arrangements..etc.

In reality life has to go on..and someone has to do these things or we would both flounder....we have to survive.I have to survive in order that he survives.
There isn't time to stop and think "is this ethical"...
Can you bring ethics into relationships?......

I agree there is a need within professional relationships...patient/doctor/nurse/carer to have this established....

Will do my best with the questions....

Love gigi xx

 

[Skye]

posters should be aware that while we would hope that everyone is upfront about their situation, it is entirely possible that one or more may have relatives lurking, or even posting, incognito.

This is the point, for me.

TP is a forum for people with dementia and their carers. If any of my family or friends wanted to read my posts, I would hope they would have the courtesy to tell me. Anything else would in my opinion be unethical

Even if the permission of the patient is given for intimate discussions with virtual strangers on this website, who knows that other family members could be exposed to this information and be uncomfortable How can you protect everyone?

I repeat, no-one is exposed to TP unless they choose to visit the forum. If they are uncomfortable, they have the choice not to read. We are not here to protect family members who choose not to reveal themselves. We protect our loved ones with dementia, and as far as we can, each other.

Ethics are a subject which everyone finds a different level. I believe the internet can be a wonderful tool or a dangerous weapon

Absolutely! And our moderators warn us frequently that we cannot be sure people are who they say they are.

But everyone who knows John and me, and many people who don't, know our situation. I have today been asked to take part in another video for carers. I do not see how posting on TP is any more dangerous, or unethical.

For me, TP is a wonderful tool!

Daisy, I respect your right to your opinion. Please respect my right to differ.

 

[daisy2468]

Thank you for your point of view which I understand and respect. This is about ethics and we are all coming at it from different angles. All are fine I suppose depending on your life and whats there for you. I suppose I am one of the lucky ones as I have a family circle who support me in much the same way as this web site is supporting others.

Caring for someone with dimentia full time with not much support must be very lonely and difficult and the need to talk to someone who understands must be urgent. If this website supplies carers with this support that is very wonderful and it must do a wonderful job.

I was just perhaps looking at a darker side knowing that the internet is a dark place and you do not really know who is who. Therefore to reveal intimate stuff to strange people seemed to be wrong to me.

Ethical behaviour towards ones patient is number one for me and I try to remember that my mum brought me and my family up in a wonderful way and she deserves all respect back. so I would not want to tell even close friends about her toilet habits and such,I think those things are private. But as I say, each to his own.

 

[JPG1]

Newcomer Not Knowing Where To Post!

As a newcomer to this site, I have no idea whether I am doing that which may be required of me. So if I send my message in the wrong place, at the wrong time, to be read by the wrong people, then all I can say is mea culpa.

I registered here yesterday, because I am looking for information about dementia and the care of those with dementia, and have been reading, but I then came across this 'dementia and ethics' way of thinking. And it struck me, that that is exactly the problem I have been encountering for the last years, doing all I can think of doing to assist with my own relative and their personal experience of dementia. And the question I am asking now, having read a few of the entries on this question: do ethics enter into the thinking of the consultants, the social services people/the GPs/the care homes/the support workers that I have been dealing with for the last years?

I try to do my best, I ask questions of them all. Then I find that I ask those same questions again and again and again ... most of them begin with the words "is it possible to ...." and then "would it be possible to ..." and then "why is it not possible to ..." and so it goes on. Must say that I haven't been able to identify many reasons "why it is not possible to ..." give meds when required, to check weight as required, to help with food as necessary, to engage and involve and occupy the waking hours as so very obviously and urgently necessary. But no replies ever coming my way. Just . . . we will do what we can do when we can do it ... which means never!

How long do the 'ethics' take to come into motion, so that a person can be cared for as s/he needs and should be cared for?

I don't call myself a carer, but a caregiver. I give all I can give in the way of caring about and for my relative. I care enormously, but I am slowly (or belatedly) realising that my caring is being taken out of my hands.

I cannot care. I cannot truly and genuinely care. Because of the 'ethics' that seem to control whether or not I may have any input into the care of my much-loved and much-cared-for relative. It is all taken out of my hands, if only by the non-action, the inability to 'care' by those people who are charged with 'caring'.

No, I am not living 24/7 with the person for whom and about whom I care. But my head is there 24/7, full of caring for and about. I do as much as I can find the energy to do, hands on, fully hands on caring. But still I am rendered impotent, by those 'who don't care, but are paid to pretend they do'.

So I guess that having found this question about ethics, my question would be where am I to find the ethics in all of this?

 

[Skye]

Caring for someone with dimentia full time with not much support must be very lonely and difficult and the need to talk to someone who understands must be urgent. If this website supplies carers with this support that is very wonderful and it must do a wonderful job.

Thank you Daisy, at least we can agree on that!

so I would not want to tell even close friends about her toilet habits and such,I think those things are private. .

No, I wouldn't tell close friends either, I preserved John's dignity as far as I could.

But I had huge problems with John's bladder at night, problems that even the incontinence advisor had never encoutered. I posted, and people came up with suggestions.

Now, when other members encounter a similar problem, I can pass on my experience, or simply refer them to the appropriate thread. That's one of the wonderful things about TP. Someone has always been there before you.

Love,

 

[lesmisralbles]

Daisy Daisy, give me your answer do

You are offending me and my husband.
If I/we choose to discuss his toilet habit's, and you do not want to read about it, log off.
I have had so much help from all on this site.
So like I said LOG OFF.
Barb & Ron

 

[jc141265]

Can we please be very careful to not demand someone log off? Especially when the person demanding it has a far stronger support network on here than the person that they are demanding it of. I know some of us are very certain that what we are doing is not unethical, but it is a dangerous practice to never question our behaviours and it is even more dangerous to block freedom of speech, even if that blocking is done accidentally, because the majority feels that the new opinion is incorrect. A majority of people then explaining why they don't believe their practices are unethical but asking for further clarification from the person suggesting that the behaviour is unethical, is educational for both parties involved.

I know Barb&Ron you put every ounce of your being into caring and so it hurts, hurts real bad when someone says something that feels like they are suggesting that you don't care. Saying something like posting on TP about our loved ones in unethical is like poking a wounded bull, but we are not animals and so we need to try to control that urge to kick the poker away from us, no matter how justifiable it seems.

TP can be a wonderful support network, however sometimes that means that if those people who all support each other have the same viewpoint they accidentally begin to block people who are not of the same thinking. A vicious circle forms where people who are dealing with the very strong emotions of care-giving can find that they are emotionally not capable of dealing with a lot of people telling them that their mindset is wrong in an agressive manner, so those 'different' people walk away from this site, robbing it of diversity, when in all reality they have a right to put their viewpoint out there to see if anyone else feels the same way that they do. Any sociologist will tell you that it is vital for the survival and progress of a healthy community to remain open to different ideas.

Daisy is just one voice here, there is no harm in her post, if you can let the initial hurt go. And her post brings value, because even if you have thought carefully about your actions and consider that your posts are not unethical, it is very good practice for those who haven't thought it through to consider this, as we are all dealing with and are responsible for people who have ultimately lost their power in society.Ethics is not a black line, there are many shades of grey, and the only way for society (and even an online society)to evolve in a positive way is to allow ethical debate to occur.

If daisy herself was completely close minded, then I would say she too was just behaving like a wounded bull...and I will always understand but not condone that reaction on either side, because I know how very hard it is not to strike out at something when you are in pain. But daisy has simply stated that this is how she feels, has shown that she is open to suggestion, and can understand why some of us feel it is not unethical to do what we do, even if she is still not sure. I think we should afford her the same respect.

Perhaps TP should come with a disclaimer, that the people on here depending on what part of the emotional roller coaster they are on, can sometimes be hurtful in what they say...but the hope is that we can overcome our weaknesses and be better than that for the majority of the time. I think also that those of us who do have the majority viewpoint, need to take responsibility for that power, and restrain ourselves from outright rejection of minority concerns or else we risk creating a quasi totalitarian society.

Totalitarian regimes or movements maintain themselves in political power by means of an official all-embracing ideology and propaganda disseminated through the state-controlled mass media, a single party that controls the state, personality cults, central state-controlled economy, regulation and restriction of free discussion and criticism, the use of mass surveillance, and widespread use of terror tactics.

A TP that develops an unoffical all-embracing ideology, that is supported by constant postings espousing that ideology, with a group of people who do the majority of postings, and through angry responses thus restrict free discussion and criticism, would head down that path of being everything that society today rejects as evil. And before anyone posts angry responses that they do not do such a thing, remember the war, and whole countries of people who thought they weren't doing anything wrong either.
We are better than that and I know that Barb&Ron you are better than that for I have seen through your personal posts how much you do care.
Last but not least, I am very sorry JPG1 that you are yet to receive responses to your post, the rejection is not a rejection of what you said but simply due to the accident of your posting in the middle of a heated discussion!

 

[lesmisralbles]

Quote : I know Barb&Ron you put every ounce of your being into caring and so it hurts, hurts real bad when someone says something that feels like they are suggesting that you don't care. Saying something like posting on TP about our loved ones in unethical is like poking a wounded bull, but we are not animals and so we need to try to control that urge to kick the poker away from us, no matter how justifiable it seems. End Quote :

I understand what you are saying
But in my world, do not poke me or mine.
And, forgive me, I will poke back.
Alzheimer's is a cruel illness.
And at no time have I ever discussed anything about Ron that he has not been informed about. We talk about everthing.
This is a web page to discuss ALL thing's.
If we start to regulate what we can say (within reason) how can other's know that they are not the only one dealing with incontinence.
I know I have had some wonderful help from many who are dealing with this issue day to day like I am.
If the subject is not discussed, how can we help each other?
And Daisy, we are all different.
Do not read anything that offend's you.
As I said, log off.
And read other messages.
I can choose what I want to watch on TV, or I can choose to turn it off.

Barb & Ron XX

 

[gigi]

Bravo.....

Hello Barb,

Alzheimer's is a cruel illness.

And those of us who are caring come to TP to voice our feelings and concerns..because we live with the devastation it causes to our lives.

I've had 2 incidents this week when I've had to stand up to the world and fight the fight for Alzheimers in the "real world"..

Have to say I never thought I'd see the day when we have to do the same on TP. We don't have time or energy to consider our "ethical" position....

It takes courage to stand up for you and yours..

Well done Barb...

Love gigi xx

 

[Skye]

Nat, I think you've achieved the impossible; standing on a soapbox while sitting on the fence!

 

[Margarita]

If we start to regulate what we can say (within reason) how can other's know that they are not the only one dealing with incontinence.

I know what you mean, I have learn more from other sharing about incontinence on TP then from any incontinence nurse district nurse .

May be its all down to feeling of shame of taking about incontinence then ethics .

We all perceive things different.

"Ethics has to do with what my feelings tell me is right or wrong."
"Ethics has to do with my religious beliefs."
"Being ethical is doing what the law requires."
"Ethics consists of the standards of behavior our society accepts."
"I don't know what the word means.

http://www.scu.edu/ethics/practicing/decision/whatisethics.html

I suppose I am one of the lucky ones as I have a family circle who support me in much the same way as this web site is supporting others.

Daisy is a lucky person when she says that, but even with a family unit I can talk to I still share on TP . But then I am my mother daughter , My mother always was an open Minded person when it can to any disability.

but then I also felt when I first started to come onto TP, would Shy away from really tyeing about my mother symptoms of dementia, but found it amazing that my mother shared so many of the same symptoms as I was clueless to dementia .

Then I thought to myself why should I feel ashamed or even my mother feel ashamed of the symptoms of dementia when its not even her fault.

what kind of society do we live in that we can't even talk about about incontinence in an open positive manner .

Why hide it behind close door .

So the Internet is a dark place

I don't perceive it like that, yes your all stranger to me , I feel more comfortable, safe talking about my mother symptoms then meeting up a group of human people outside of the Internet that will not open up
talk open about they love one symptoms, because it make me feel uncomfortable as I would feel they have feeling of shame about it rather the the whole hypocritical ethics issue of it all, so would just would walk out of the room .

Just like we can do in every thread we don't like reading about .

It work both ways in the Internet land or outside the Internet they is a lot of negative energy, dark side of life in people .

I have learn from TP in the past few years that dementia bring out the negative in people , like it did 30 years ago with Cancer .

 

[jc141265]

<turns to Hazel and curtsies...>
I'm just trying to keep the peace...
We are all hurting enough without more pain being spread about.
I don't like anger...I've never seen it achieve anything long term except to cause more anger and hurt down the track. As a child I sat between more anger and hurt than any child should ever have to bear, and what was the point of it all? Just so that one party could feel better for a little while, whilst the other hurt and stewed on that hurt until it turned into anger that would be used to knock the other person back down and round and round it would go. And if one person manages to use their anger to knock another down for good, thats no good thing either, because that person knocked down is forever in pain and frankly I don't get any satisfaction out of seeing anyone hurting, not even my worst enemy.
So I'll sit on the fence because I'm prepared to take the loneliness of not being part of the gang, being seen as the one who is on a soapbox, often being misconstrued as up herself, when in fact I am just a little girl inside with her hands over her ears just wanting it to stop, for the hurting to stop. I don't say what I do because I want to be the superior high and mighty one but say it just because I want it to stop. The messages above since my post are full of love for the people we care for, the anger seems to have dissipated and for that I am very very grateful.
Why don't I see a problem with Barb&Ron's most recent post even though it still suggests daisy logs off? Because the anger there is no longer palpable, the capital letters that signify shouting on the internet are gone and the love causing the reaction is now clearly evident.

 

[helen.tomlinson]

And I have a sneaky feeling that Daisy's original post was intended, and in some way has achieved, to hurt.

Helen

 

[Skye]

Absolutely right, Helen. In fact, I think a number of people have been hurt by Daisy and some others who have posted.

Just as every person with dementia is different, so every carer is different.

We are all dealing with dementia, and with the stress that entails. We deal with that in our own ways, and that is our right.

And we prefer to support each other, rather than to challenge, because that is what this forum is for.

I do hope that all those who have issues with the way some members deal with their problems have made the effort to respond to the questionnaire. We all have a great opportunity to express our views without hurting anyone.

 

[Brucie]

I think this is a good moment to return to the original purpose of this thread - requesting responses to Alice and to the researchers [details above] on the topic of ethics.

There are few days left so I do urge anyone with strong feelings on the subject of ethics - whichever way - to respond.

To focus minds on that, I'm now closing this thread.