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Sufferers v carers.

GillPJ

Registered User
Jun 2, 2020
46
One thing that struck me, and I haven't been here long, is how horrendous it must be for dementia sufferers to read the carers of sufferers forums.. I'm one of the guiltiest of reducing dementia to :how do we cope with the symptoms: rather than, what on earth must these people be feeling? Norms post was the eye opener. These people are living in a shadow land, with all the indignities and fears. We owe them more than this.
I know the light hearted banter is a coping mechanism, but it doesn't sit very well when sufferers are reading it too.
 

Emmcee

Registered User
Dec 28, 2015
10
Hi there,
I couldn't agree with you more. It's one of the reasons that I posted yesterday - not just because I was strugglingto cope with my Mum's symptoms but also because they were causing her such distress/ confusion and I didn't know how best to help her.
Emm
 

Whisperer

Registered User
Mar 27, 2017
150
Hampshire
I take your point but there are two sides to any situation. Regrettably there is no perfect answer, You raise a valid point but despite the risk of being slatted for appearing insensitive I think some points need to be made.

look at the times when some members post here, quite often in the early hours having had a day driving them to despair.

It would be great if no human emotion slipped into the posts, no gallows humour, all fears and anxiety contained behind tight lips. Unfortunately life is not like that, Star Trek’s Data does not post on this forum very often.

Please understand I am not trying to be glib. Read some of my posts trying to help and support others in dark moments. I try to select my words carefully. I share your concerns. That said consider the need for carers to have a place they can go, seek help and support, let go of their frustrations, anger, anxiety for the future. If not here then where? some people posting here are in desperate moments, trying their best for their loved ones, tired out physically, some also emotionally. At 2AM in those circumstances how it might read, will I cause offence, etc, are I suggest not that persons primary concern. Before anyone judges that comment remember if that carer burns out, gives up, etc, then in the background the PWD is in real trouble. How they reach out for help, the actual words used in the moment, are far less important than the fact they feel they can reach out.

There are moderators on this site. It is split down into different forums. If you stray into one meant for a certain group then you should be mindful of their needs. For example I sometimes read threads on the forum end of life care. Mum is not there yet but I read to try and see what might be our future, what can I do to help mum and me when that time comes. I accept the comments made as being from people in their darkest moments, sharing their grief to help themselves and possibly others yet to reach that stage. Coming to the end of no doubt a long road of caring. Another thread was posted by a lady over several months, deciding to put her mum into a care home. Making the decision, deciding which one, preparing for the day, packing up her mum’s old home. The emotions were powerful, it was hard to read sometimes but it gave me an insight into what may one day face me. From the bottom of my heart I thank that lady for her honesty, courage and determination to chart her journey. If a PWD read the same thread and found it distressing should we take down that thread? We need to be sensitive to each other, but forums such as this one deal with emotionally charged issues, feelings stretched beyond where they should be, etc.

So If Norrms ever strayed into forums headed for example I care for a person with Dementia, he would need to put himself into the shoes of a carer. If that were possible for him to do, having read his very moving description of his experience of living with Dementia. Note the posting time. Is the wording meant to insult a PWD or are they from stressed, tired, loved ones trying to get help? He appears to have the capacity to still make informed opinions. Please try and accept the carers posting are doing a demanding role for loved ones.

I stress again I am not being glib, trying to minimise that a PWD might find some comments annoying, Unsettling, disturbing, insulting, etc. What I would ask them is how would the life of a PWD be improved if self imposed censorship meant carers in sometimes very emotionally demanding circumstances felt unable to post, for fear of how it might read to others. Norrms if you ever read this post please try and understand what I am saying. If you were a carer, tired, fighting a system that does not seem to care for your loved one, seeking help for a practical problem, are the words sometimes used more important than the underlying purpose? Please let us not fall out amongst ourselves when there are so many others things we must contend with.

On any forum there will be a handful of people who might appear tactless, could have put things slightly better, etc, but if the price of tidying that up is just one carer really in need does not post that I would suggest is to high a price. Society largely ignores Dementia, belittles the very real struggles and problems it creates, charitably you could say it does not understand the issues.. This forum is a goldmine of information, based on the contributions of genuine people trying their best. It has been very helpful to me. PWD have a dreadful experience and have no choice. Carers hang on in there through love, taking god only knows how many emotional knocks, practical issues to be dealt with.

Hope my words are accepted as genuine by any PWD who reads them.
 
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annielou

Registered User
Sep 27, 2019
1,411
Yorkshire
I worry about this a lot. But I am one of the people that uses the forum like a diary to write down what has happened that day as a sort of slight release and also at times for advise. I do feel bad that sufferers of dementia may read it and I do feel bad that people will think I'm whiney. I'm not meaning to be disrespectful to my mum who has alzheimers or anyone else. I often put how bad I feel for her and how awful it is to not know what to do to help her its like something has taken over her brain and made her a prisoner of it and also me too.
I have read some of norms post and it is heartbreaking, I often think that's how awful it is for my mum and even when I am writing about my hard day I know it has been dreadful for mum. I don't forget that when I post but I think carers are looking for ways to cope to get them AND their loved one, who is the sufferer, through the day. It is incredibly hard to be a carer there is no use pretending it isn't even if that may upset some people. We are trying our best to help make life as good as possible for them, but we as carers are people too and we are suffering and just like the people with the disease we too need somewhere to air our feelings, ask for advise and gather information about what is to come and tips on how to cope with trying to help our loved one and ourselves live with this awful disease.
It may be unfortunate that both carers and sufferers are on the same site, or it even could be helpful I don't know. I found this forum by searching google for how to help mum with something she did and at first I didn't even sign up I just read other people posts, some carers and some sufferers. Even if carers and sufferers had completely different sites there's nothing to stop either coming across them like I did and possibly reading something that may upset them.
I am not trying to be disrespectful or hurtful or undermine any person, sufferer or carers feelings when I write my posts I am trying to stay sane, I am trying to release a little bit of my permanent state of anxiety about if I can look after my mum and keep her and me alive. We write about how can we cope with this behaviour and that behaviour rather than how the sufferer feels because we need to find a way to cope to get us all through the day, we do think of their feelings way more than our own, if we didn't we wouldn't be carers and need to post on here, but we have to be practical and find ways to cope and that's what most peoples posts on here are about I think.
As carers we spend a huge amount of time trying to spare our loved ones upset and unhappyness and writing on here and saying how do I cope with this is our way of knowing how to cope with this situation so that we don't upset them or make them unhappy because we feel we're not coping with it well.
I do feel bad someone with dementia could read my posts and be upset about how carers struggle and how at times we have to talk about things that happen, that upset or annoy us, or how tired we are, and how frustrated we are, but it is better to do it on here where people have a choice whether to read it or not than to let it out in front of our loved one.
Dementia is awful, more so for the sufferer but as carers we are sufferers too and we also need a place to talk. I don't think anyone on here means to upset anyone else. I do get the point you're making but don't see a way round it.
And I hope my rambly post hasn't upset anyone today x
 
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canary

Registered User
Feb 25, 2014
12,856
South coast
consider the need for carers to have a place they can go, seek help and support, let go of their frustrations, anger, anxiety for the future. If not here then where?
This. Exactly.

There are times when emotion is raw. We as carers need somewhere where we can offload our problems, where we can talk about anything without fear of offence. Many things we have to deal with are upsetting, embarrassing or frightening. I often say to newbies - nothing to do with caring is off limits. We need somewhere where we can share without fear of censorship (within the rules of the forum, of course) or judgement.

I have very seldom come across a forum like this - so honest, supportive and caring. If we couldnt be open - constantly looking over our shoulders in case we cause offence - our lives (and consequently the lives of our person with dementia) would be infinitely poorer.
 

jugglingmum

Registered User
Jan 5, 2014
5,815
Chester
I'm so glad you posted @Whisperer as I wanted to write last night and didn't know how to phrase it.

It is a massive benefit to carers to tell it 'warts and all' whether it it the PWD's behaviour, or their own struggle.

In the case of many where it is a partner they don't want to burden their children, or host mode applies and children or fellow siblings only see one side.

It might be someone never liked their parent, or their partner was difficult long before dementia reared it's head and it's ok to say this as well.

The point of the forum would disappear if carers couldn't sound off.

As has been said the forum is split into sections and don't read those sections if you feel it isn't appropriate.
 

Just me

Registered User
Nov 17, 2013
267
I take your point but there are two sides to both situations. Regrettably there is no perfect answer, Norm has valid points but despite the risk of being slatted for appearing insensitive I think some points need to be made.

look at the times when some members post here, quite often in the early hours having had a day driving them to despair.

It would be great if no human emotion slipped into the posts, no gallows humour, all fears and anxiety contained behind tight lips. Unfortunately life is not like that, Star Trek’s Data does not post on this forum very often.

Please understand I am not trying to be glib. Read some of my posts trying to help and support others in dark moments. I try to select my words carefully. I share your concerns. That said consider the need for carers to have a place they can go, seek help and support, let go of their frustrations, anger, anxiety for the future. If not here then where? some people posting here are in desperate moments, trying their best for their loved ones, tired out physically, some also emotionally. At 2AM in those circumstances how it might read, will I cause offence, etc, are I suggest not that persons primary concern. Before anyone judges that comment remember if that carer burns out, gives up, etc, then in the background the PWD is in real trouble. How they reach out for help, the actual words used in the moment, are far less important than the fact they feel they can reach out.

There are moderators on this site. It is split down into different forums. If you stray into one meant for a certain group then you should be mindful of their needs. For example I sometimes read threads on the forum end of life care. Mum is not there yet but I read to try and see what might be our future, what can I do to help mum and me when that time comes. I accept the comments made as being from people in their darkest moments, sharing their grief to help themselves and possibly others yet to reach that stage. Coming to the end of no doubt a long road of caring. Another thread was posted by a lady over several months, deciding to put her mum into a care home. Making the decision, deciding which one, preparing for the day, packing up her mum’s old home. The emotions were powerful, it was hard to read sometimes but it gave me an insight into what may one day face me. From the bottom of my heart I thank that lady for her honesty, courage and determination to chart her journey. If a PWD read the same thread and found it distressing should we take down that thread? We need to be sensitive to each other, but forums such as this one deal with emotionally charged issues, feelings stretched beyond where they should be, etc.

So Norm if you stray into forums headed for example I care for a person with Dementia, please put yourself into the shoes of a carer. Note the posting time. Is the wording meant to insult a PWD or are they from stressed, tired, loved ones trying to get help? You have the capacity to still make informed opinions and decisions. Please try and accept the carers posting are doing a demanding role for loved ones.

I stress again I am not being glib, trying to minimise that a PWD might find some comments annoying, Unsettling, disturbing, insulting, etc. What I would ask them is how would the life of a PWD be improved if self imposed censorship meant carers in sometimes very emotionally demanding circumstances felt unable to post, for fear of how it might read to others. Norm if you read this post please try and understand what I am saying. If you were a carer, tired, fighting a system that does not seem to care for your loved one, seeking help for a practical problem, are the words sometimes used more important than the underlying purpose? Please let us not fall out amongst ourselves when there are so many others things we must contend with.

On any forum there will be a handful of people who might appear tactless, could have put things slightly better, etc, but if the price of tidying that up is just one carer really in need does not post that I would suggest is to high a price. Society largely ignores Dementia, belittles the very real struggles and problems it creates, charitably you could say it does not understand the issues.. This forum is a goldmine of information, based on the contributions of genuine people trying their best. It has been very helpful to me. PWD have a dreadful experience and have no choice. Carers hang on in there through love, taking god only knows how many emotional knocks, practical issues to be dealt with.

Hope my words are accepted as genuine by any PWD who readsthem
Thank you for your compassionate post. Expressed far better than I could.
 
Last edited:

Whisperer

Registered User
Mar 27, 2017
150
Hampshire
I have slightly edited my earlier post. I meant my reply to be for GillPJ based on her reading of Norrms thread, which anyone would find very moving. Sorry I did not mean Norrms had commented on how Carer’s May record their feelings in words on this Carers forum. My defence was of carers needing a forum where they could seek support, guidance, deal with very powerful emotions, speaking openly and honestly,. There is always the possibility if a PWD read the posts on carers forums, they might be upset, offended, etc. Shutting down or severely moderating carers forums is not the answer. Somewhere in the background hopefully for Norrms is a carer doing their level best to help him. That individual and all carers need somewhere safe and non judgemental where they can off load powerful emotions, fear for the future, a need for practical advice.
 

Whisperer

Registered User
Mar 27, 2017
150
Hampshire
I worry about this a lot. But I am one of the people that uses the forum like a diary to write down what has happened that day as a sort of slight release and also at times for advise. I do feel bad that sufferers of dementia may read it and I do feel bad that people will think I'm whiney. I'm not meaning to be disrespectful to my mum who has alzheimers or anyone else. I often put how bad I feel for her and how awful it is to not know what to do to help her its like something has taken over her brain and made her a prisoner of it and also me too.
I have read some of norms post and it is heartbreaking, I often think that's how awful it is for my mum and even when I am writing about my hard day I know it has been dreadful for mum. I don't forget that when I post but I think carers are looking for ways to cope to get them AND their loved one, who is the sufferer, through the day. It is incredibly hard to be a carer there is no use pretending it isn't even if that may upset some people. We are trying our best to help make life as good as possible for them, but we as carers are people too and we are suffering and just like the people with the disease we too need somewhere to air our feelings, ask for advise and gather information about what is to come and tips on how to cope with trying to help our loved one and ourselves live with this awful disease.
It may be unfortunate that both carers and sufferers are on the same site, or it even could be helpful I don't know. I found this forum by searching google for how to help mum with something she did and at first I didn't even sign up I just read other people posts, some carers and some sufferers. Even if carers and sufferers had completely different sites there's nothing to stop either coming across them like I did and possibly reading something that may upset them.
I am not trying to be disrespectful or hurtful or undermine any person, sufferer or carers feelings when I write my posts I am trying to stay sane, I am trying to release a little bit of my permanent state of anxiety about if I can look after my mum and keep her and me alive. We write about how can we cope with this behaviour and that behaviour rather than how the sufferer feels because we need to find a way to cope to get us all through the day, we do think of their feelings way more than our own, if we didn't we wouldn't be carers and need to post on here, but we have to be practical and find ways to cope and that's what most peoples posts on here are about I think.
As carers we spend a huge amount of time trying to spare our loved ones upset and unhappyness and writing on here and saying how do I cope with this is our way of knowing how to cope with this situation so that we don't upset them or make them unhappy because we feel we're not coping with it well.
I do feel bad someone with dementia could read my posts and be upset about how carers struggle and how at times we have to talk about things that happen, that upset or annoy us, or how tired we are, and how frustrated we are, but it is better to do it on here where people have a choice whether to read it or not than to let it out in front of our loved one.
Dementia is awful, more so for the sufferer but as carers we are sufferers too and we also need a place to talk. I don't think anyone on here means to upset anyone else. I do get the point you're making but don't see a way round it.
And I hope my rambly post hasn't upset anyone today x
Hello

Thank you for posting. Your entry reinforces the point I was trying to make. You are sensitive to the possibility of causing hurt but at the same time you have a need to express your feelings, seek advice, etc. It will always be a balancing act, but anyone reading your comments should be clear you are aware of that point and also your need to post. I do not believe your comments will upset anyone.
 

Flavelle

Registered User
Jun 20, 2017
48
Thank you Whisperer.
I do think, even here on TP, many judge & fail to see that dark humour is part of the tapestry holding together carer’s coping strategies as they try & maintain lives for frail bodies that are failing. PwD are sensitive to emotion & can mirror a cheery disposition. For a family member to maintain this outlook, through the heartbreak of continual slow disintegration, a place to vent (with those who are going through something similar) is essential. This site also works in terms of a helping handbook, by joking about all the grim **** carers sort somehow it is made more bearable.
 

annielou

Registered User
Sep 27, 2019
1,411
Yorkshire
Hello

Thank you for posting. Your entry reinforces the point I was trying to make. You are sensitive to the possibility of causing hurt but at the same time you have a need to express your feelings, seek advice, etc. It will always be a balancing act, but anyone reading your comments should be clear you are aware of that point and also your need to post. I do not believe your comments will upset anyone.
Thanks xo 👋
 
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GillPJ

Registered User
Jun 2, 2020
46
You all have very valid points and written sensitively. My post was a knee-jerk reaction at the time, probably berating myself for not being as sensitive as I could be, suddenly seeing it through someone else's eyes. You're also right that this forum is very necessary for both 'sides' of the equation. I certainly wasn't berating anyone else.
 

Whisperer

Registered User
Mar 27, 2017
150
Hampshire
You all have very valid points and written sensitively. My post was a knee-jerk reaction at the time, probably berating myself for not being as sensitive as I could be, suddenly seeing it through someone else's eyes. You're also right that this forum is very necessary for both 'sides' of the equation. I certainly wasn't berating anyone else.
Dear GillPJ

Having read Norrms thread I think anyone would be moved by it. Please be assured I never felt berated by your comments. As you say two sides of the equation. I hope you will post regularly and always feel welcome on this forum. Us carers have to stick together as regrettably many elements of officialdom and the wider public just do not really get the problems Dementia can create, for carers and sufferers alike. Best wishes for the future.
 

Lawson58

Registered User
Aug 1, 2014
2,165
Victoria, Australia
Perhaps we also need to remember that this is not the only place a PWD can read disturbing stuff about their own condition and information for and about carers. If a PWD is competent enough to access this site, then they would be able to find all sorts of similar information via Gogle and YouTube etc.

We cannot hold ourselves responsible for what others, PWD and carers, may discover on this site or similar ones. My husband loved to watch the TV show Wallander and found it quite confronting and I realized then that we cannot protect our PWD from what is inevitably freely available around us.

My husband required a few hours in Emergency yesterday and the lady in the next cubicle was evidently a PWD who was quite agitated. My husband could hear every word of what was said. I would have to say that her son was brilliant with her and what amazed me was how well the nurse was able to help them, informing them of their care options and she offered to ring around and see if any of the local care homes in their area would be able to take her.

Apart from that, when I am having a bad day, I sometimes tell my husband exactly what I am feeling. Some may see that as being wrong but that is how we function and how I survive. We do live in a real world, remembering that bubbles are very fragile things and not a safe retreat for anyone.
 

Palerider

Registered User
Aug 9, 2015
1,848
North West
I think its too easy to think about this problem as simply 'carers versus sufferers'. The problem is that there are many paradoxes in caring, and this is one of them. Its also not helpful to cast carers against sufferers in that way because both groups have different needs, although dealing with the same disease. There some interesting explanations as to how this situation arises as paradoxical, but without carers being able to faciltate their subjective burden and explore how they feel, cope and often tear their hair out, how would they continue as carers ? But its also the same for those with dementia they equally may express their frustrations with the world and their carers. Both insights are equally valid and also important.

But its not just as simple as that, many people find it difficult to accept dementia in their partner or parent or friend and it is ever changing in a one way direction -the true paradox isn't carers versus sufferers -its the disease itself.

Its absurd to think that in caring for someone we can can encounter such a range of feelings and emotions that seem in conflict with the purpose of caring, but we are not mechanistic beings that can repeat indefinately without breaking down and with no emotion just a cold emptyness. Expression is important for everyone carers and sufferers a like, and yes it is contradictory to have a forum with both world views on it, but without it how would people with common ground connect, find support and most importantly channel their frustrations in a more meanigful and constructive way? How do we develop more healthy coping mechanisms than simply bottling everything up because the person we care for and love can no longer participate in the converstaions that once mattered and it would be unfair to burden them with something they no longer understand?

I don't have any real answers, but I know I'm not perfect and neither is the world we live in.
 

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