Do any of you

[Jasper3]

Do any of you struggle to answer a posting ?
I read through as many of the postings that i can, but often feel that my answer would sound harsh, I would'nt mean it to be..but i tend to speak in black and white

this trip through dealing with mums alzhimers has had me seeing and feeling so many different emotions, that sometimes I could just run up a hill and scream my head off

I feel sometimes if i write a reply..it sounds like i'm being arrogant or some sort of expert.so i delete it

how would you describe dealing with this illness to someone who is just getting told thier mum/dad/ or sibling has alzhimers

get ready for a rough and tough ride don't sound right

 

[Soobee]

Yes I also struggle to answer sometimes. Especially if I don't have direct experience of what someone is going through.

 

[Sue J]

Yes - reading posts is one thing but answering another.

Type may be black and white but dementia and AZ most definately is not.

Yes I delete things I've written and wished I'd deleted some I'd posted.

Some have been deleted for me when I've inadvertently pressed some wrong button - still don't know how I've done it - then I'm sure it's divine intervention - that knows better than meSo once again - you'e not alone

 

[Margaret79]

I strugle too sometimes, especially if I don't have the same experience. So if I do answer it is just my experience I speak of, that's what I know and feel comfortable with. I guess it's good that there is such a breath of experience on this forum. There's usually someone who is confident to answer.

I have found myself that I feel supported even when someone has no experience but just say's hi I'm here.

 

[Jasper3]

maybe it all depends on how good a day we have that affects the way we answer a post,

 

[nocturne]

I don't think that there is any need to feel that you ought to be posting more often than you do. I try to respond if I have had a similar experience, especially if there is anything positive I can say. I know that when I have had problems just feeling that people are aware of how I feel and understand and sympathise can help, so, even when I cannot offer any advice, I might post a few words of support. It can take me ages as I reword things so many times! I delete it all sometimes, too. I've deleted a few bits from this!
Jan

 

[Sue J]

It's nice knowing someone's there.

 

[lin1]

Your not alone, I too find that sometimes I read press reply and I cant find the rjght words, or the experience
Im often out of my depth as mum was self funding , we were able to care for mum at home ourselves till she passed away peacefully

Ive found that reading other peoples replies do help over time in how to reply and what advice to give even if its something you have not been through

 

[lin1]

It's nice knowing someone's there.

I couldn't agree more

A warm welcome to a new member is good ,it lets them know we are friendly and care enough to reply.

And an, im sorry to hear that ...... lets the person, be they new or not, that someone cares

 

[lin1]

how would you describe dealing with this illness to someone who is just getting told thier mum/dad/ or sibling has alzhimers

get ready for a rough and tough ride don't sound right

I feel its not wrong to gently warn them it can be a rollercoaster at times, and they are not alone in this ,

 

[scarletpauline]

I am the same, I really want to support and comfort anyone who is having a bad time, but don't have much experience myself, can only do our best though. Love Pauline xx

 

[Grannie G]

No one is expected to be a professional here. We are all novices and sadly learn from our own experiences.

Sometimes a particularly difficult day can make us feel intolerant of what might seem to be lesser problems of others, but each has his/her own headaches and they are as real as anyone else's.

We also all have our own strengths and weaknesses and strategies for coping. None are wrong if they help us get through.

But as Sue said, it`s good to know someone is there, it helps the feeling of isolation. We all know there are no easy answers, so a simple greeting, and expression of understanding is often all it takes to make another feel better.

 

[xanadu777]

I always struggle to answer postings and so I quite often just read what other carers have to say, take their experiences on board and leave it at that. There is a great deal of wisdom put out in TP as no one knows more about caring for a particular Alzheimer's sufferer than a loving carer. Most of us run through the whole gamut of emotions in a day and hopefully we distill a small amount of loving experience and understanding from them. It ain't easy and don't let anyone tell you otherwise.

 

[sistermillicent]

Sometimes I struggle with this too, and sometimes I wish I had not replied. I have become involved with threads that are written by people with very different views from me, and the other day I wrote something that I fully expected to be deleted by the moderator, but it wasn't, as far as I know. Do the moderators tell you when they have removed your post?

I like to be honest, but think I contradict myself depending on what sort of a week I am having, it might feel positive one week and negative the other, but then that is how things are with AD.
Dad was in a state over mum when I rang him on Friday evening, but rang me last night to say all is fine, he doesn't know why he was feeling like that. I accept the ups and downs of other people so I suppose they just have to accept mine.

Pippa

 

[grobertson62]

me too
some people seem to have the right words & I envy them that

I am still new to this & struggling but find it comforting to know I am not alone in this struggle

some times it is just nice to know someone is thinking of you & understands

Gill

 

[Onlyme]

I find it hard to post and feel very in the wrong when people are talking about their lovely parent and how they miss them.

I want to scream that I am stuck with a parent that was always selfish and put themselves first and dementia has made this worse; they pick faults with me and are agressive so I don't want to go and see them, I want to have a life. They blighted the first 20 years of my life and are now taking more of it.

I suppose I am jealous that people on here had good relationships.

I then have a cuppa and realise that this life dementia has handed us something I have to cope with and I have always got the guilt monster for company.

 

[Saffie]

I feel really guilty that, in replying to someone's post and referring to my own experience and it's relevance to that post, I somehow take the thread over a bit. Does that make sense? Other, very helpful TPers reply to me as well as the originator of the post and I end up with the help too. It's happened this week and I feel so guilty but also so grateful. I hope the originator is helped as much as I am.
I think it's because I don't like to start a thread with what I think is probably a very personal problem which is of no interest to others, or too trivial until someone else brings it up
Hopefully, when this roller coaster ride I seem to be permanently on at the moment eases a little, the insight I have gained can be passed on to others eventually.

In the meantime, any takeovers are much regretted but thank you so much for all the invaluable help.

(I hope that's come out as I meant it - that's another problem!)

 

[chucky]

Hello, i have the same problem. I posted a reply a few weeks ago which i thought wasnt in the least bit offensive but it was removed immediately and i got a PM about it. Sometimes i get mad at some posts and i find i have to keep quiet and not reply. I think its difficult because we cant sense the tone, and we dont know the person, so whats offensive to some might not be to others. On the other hand i have read some posts and thought how did that not get removed! As has been said, dementia caring is tough and sometimes we are over stressed or tired and it touches a nerve. Wouldnt do if we were all the same and we're lucky we've got TP where we can all find the same thing, -support. Hope everyone has a good day, and for those that aren't remember we're all here to help if we can. x

 

[Sue J]

It's very interesting reading this thread as everyone seems to be saying the same thing.

Living with the impact of dementia is so stressful and unpredictable and I know I have and do react in ways which I would rather not. Why do we all delete posts, unsure about replying? Because we fear what reaction we may get or fear we may upset someone - our judgements can get clouded when we are stretched to our emotional and physical limits, and live as if constantly walking on eggshells at times- but that's why there are moderators - not to pass judgement on what we write but who are able to recognize, hopefully, when someone's post is potentially upsetting or offensive to another - in the clear light of day, if you manage to get a glimpse of that, we would perhaps see ourselves that something was not wise. I bet if people reviewed their own posts months, years later they'd be hard pushed to recognize that they wrote them - but that is why TP is so good people can communicate on hear when they can't go and scream from a mountain top but would love to. I'm really glad you started the thread Jasper -thanks

 

[sunray]

telling it like it is,,,

I agree with many of you, it does depend on the day. I also know that what I write might be irrelevant to the person I am writing it to. I live in Australia and we are a nation of people who "tell it like it is" which is both good and bad. The good is that we are honest and usually trying to be helpful, the bad is that we are often seem insensitive and maybe a little hard.

I too post out of my own experiences, looking after my Mum with dementia and now overseeing her in a nursing home and my husband Ray still at home with me with vascular dementia despite the fact that he drives me mad at time.

I notice though that very few of my answers seem to be agreed with so I am either stating the obvious or way off the mark. I am doing my best though, so hope I am helping someone.

Sue.