Gonna be my last post

[elwoodlpool]

Im,staring to feel lke on here if your name dont fit know one wants to know so from this day on i promise not to post on here because who really cares about me and mum know one........And i dont want anyone to post feeling sorry for me you will never realise how close i was to that woman.


Good bye all

Elwood

 

[Tender Face]

Mark ... I've said it myself only this last week ..... sometimes TP drives me crazy ....... sometimes it's because I am too political - sometimes it's just I feel I don't fit in any partciluar 'zone' - sometimes, I'm so desperate I just can't cope with one simple remark ...... mum's sudden recent decline and going into NH and then suddenly into hospital and seeming desperate ..... well, I lose my own plot ......

Don't give up Mark ... and no, I'm not feeling sorry for you .... I thought we had a date to meet backstage ....

Talk, Mark - there are lots of people here love you and look out for you ..... and I am realising more and more the differences in culture on this forum ... but that's where its strength comes from at times ....

Always here for you, love Karen, x

 

[Margaret W]

Wow, what is this? Elwood, something has gone wrong, we people on here are here to help. Please don't give up on us. I haven't read the threads that might have caused you to feel like you do (I have my own problems), but don't give up on us. Something has been said that you don't like, perhaps inadvertently, but please keep talking to us.

Hey, pal, we are all in the same boat, it might be a bigger boat or a smaller boat, or one that has been sailing for much longer but at the end of the day we all have the same problems.

If someone has upset you, I am sure they will apologise (was it me?) Keep talking to us, we are all listening. Let us know what has upset you, and we can sort it out. There is no-one ever excluded from help on this site. I think there must have been a misunderstanding, please keep in contact, we can sort it out.

Love and best wishes

Margaret

 

[germain]

Hi Elwood,


Don't you dare go away !

How are we to know where you are,. what you're doing - which theatres etc if you don't post.


No idea why you would want to leave us - but has the depression hit again ?


regards
germain

 

[Margarita]

because who really cares about me and mum know one........And i dont want anyone to post feeling sorry for me you will never realise how close i was to that woman.

you will never realise how close i was to that woman.

your right in that we never know really , because we can only draw on our own life experience from having mothers or sons.

I only know from being a mother to my son , how he hates seeing me upset or ill , how much he loves me . Know what it feels like being close emotional to my mother then seeing her the way she is now .

As I perceive it , feeling sorry dose not come into it ,empathy (Identification with and understanding of another's situation feelings, and motives ) come into my mind when I post on TP.

 

[andrear]

Hi Elwood

I too have stopped posting as much recently. I know where you are coming from, it does seem to be much of the same names appearing most of the time. We all have our own problems and if you are not able to share on here then where else will you share?

Andrea

 

[Amy]

Hiya Mark and Andrea,
Sorry you are both feeling a bit excluded....i think a lot of us feel that from time to time. TP is constantly evolving....and I know that when I havent posted for a while, I find old faces have gone, and lots of new faces have appeared who I havent had chance to get to know.

Just looked back Mark and see you got few responses to your previous post in April when you were feeling so fearful about mum. It does hurt when that happens.

TP is here to inform and support...once we feel that it is nolonger doing that for us we have two options: to shout for help a little louder or to walk away.

Mark if you choose to walk away for a while...know that TP will be here if you need it in the future.

Take care.
Love Helen

 

[BeckyJan]

Just to say that I have often felt 'out of it' on TP - but I keep coming back and post when I have something to say and reply to others. Unfortunately I just cannot contribute on every thread - that is not because I am not interested but time just catches up when 'caring'.

I also have felt quite 'miffed' with responses or lack of them. On reflection it is usually cos I have not phrased my thread properly or I am just being too sensitive.

I agree with Amy - either shout a little louder or walk away. Even in walking away (which I have done from time to time) - you can keep up with other posts and just chip in as it suits.

Best wishes Mark and Andrea - I do hope you can still get some comfort from TP. Jan

 

[babyface]

Hi Mark

I havent been on hear for ages as i was getting too depressed.I do have an understanding of how your feeling.I too live away from mum & dont see her as often as id like.Each time i go shes detereorated more,she is like an imposter.I am grieving for my loving,kind,warm sweet mum & know shes gone forever.I havent been to visit her since january & feel too scared to go.I cant explain it,but i dont want to accept what is happening.
I hope you know you really arent alone,it does feel like that cos people around us cant possibly understand & its not fair is it?
BIG HUGS
Dawn

 

[Ditto]

Yep!!!

I also feel the same and I'm brand new.

I already feel uncomfortable, excluded and in the dark, not to mention the "ticking off" I got for saying " ignore her"

If you people had a clue as to the severity of my problem, there would perhaps be a little more understanding. It seems to me that the one place I felt that I could turn to for support and understanding is nothing more than a run of the mill "clicky" chat room.

FOR YOUR FUTURE REFERENCE:- My patient has been diagnosed with the following:- VASCULAR DEMENTIA & CLINICAL DEPRESSION. Further to this she is a certified NARCISSIST & HYPOCHONDRIAC ( both these disorders were diagnosed in her 20's)

I have taken care of her for almost four years... and in those years I have never, not once experienced common courtesy, kindliness, decency or love within or from this woman. Her children can't bear being within 300 miles of her and her twin sister just tolerates her because my patient has more money than her.

I have systematically yet almost against my will, given up my own life to care for this woman. It is the most terrible, awful thing that I have ever done to myself..( I can only describe caring for her as nothing more than self flagilation) and it is the most thank-less, underpaid and dreadful job that I have ever done. For this I sometimes question my own sanity.

BUT, I do it because I care about my world and the people in it, especially the ones that can't help themselves. I deal with Dementia and I do a hell of a job. I take care of her household, manage the daily staff and the yard boy, (its a big house) I get up at the crack of dawn to make flasks of tea and sandwiches for staff. I organise household repairs, do the shopping and do the gardening. I always make sure that she has everything that she needs or wants. Arrange her friends to visit for tea... Pick them up, bake the cakes, make the beverages, serve, wash up, then drop them all off again.

I serve her breakfast in bed 7 days a week, even if I'm down with a yearly dose of flu or any other illness, I organise, set and cook all her meals, morning teas and afternoon teas and I sit and keep her company for hours on end even when she's been up all night, wandering around the house, talking of pretty blue flowers and chandeliers and her friend Sybil (who does not exist anywhere but in her mind)

I work 24 hours a day, 7 days a week without a weekend off or any respite time, because no-one else wants the burden of dealing with her.

I watch her standing in front of mirror's, smiling at herself, I listen to her tell a "cancer" stricken friend who's daughter was murdered and who's son was killed in an accident "oh well! anyway, I'm sick too... I've got an awful cold!}

I listen to her endless renditions of "I was known as the best cook, the best dressed, had the best house, the best husband and the best at everything" The self praise and self love never stops and of course, you all know about the "attention seeking"

I think I've done and am doing the very best I can, yet on this site I've already been made to feel inadequate, if not cruel.

So.. yes!!!

I do agree and perhaps this will be my last post too. I really hope that I can find a real, bona fida group soon.

Ditto

 

[Margarita]

I work 24 hours a day, 7 days a week without a weekend off or any respite time, because no-one else wants the burden of dealing with her.

God don't know how you do it . Won't your employer pay for there mother to go into a respite care home for a few weeks a year . to give you a break ?

Surely its against the employees law to not to get a yearly break

 

[Ditto]

21 days a Year

You seem to be the only person that understands.... Thank you.

I take a once off 21 day a year holiday but inevitably my time is always cut short by a day or two or three or six, due to a family crisis! A death, an illness, or an emergency!!! Reading between the lines will help!!

AND yes... my employment contract is against every rule in the book, but what am I to do? feed her to the wolves?

In South Africa, our social service structure is'nt worth the wasted paper its written on.

Thanks again

Ditto

 

[Mameeskye]

Hi Mark and Ditto

I am sorry that you both feel that way. I know that I post sporadically but if I am online and I read a post that I can help with or answer I try to.

I do not think that anyone means anyone to feel left out. Yes, Mark some of us have gotten to "know" each other through our posts back and forth. It is always difficult Ditto when you see a post and have maybe missed others from the same peron catching up, and I know that I miss a lot of posts.

But I am with m. all the way, you need a break and I can well understand your frustrations with your employer.

Please keep posting, if not for yourselves, then to help others that might find them selves in your situation and you know the answer.

Mameeskye

 

[gigi]

I feel guilty.....

I come on to TP as often as I can..to catch up with threads..to read new threads..to learn..

These days I admit to "wallowing in despair"...

So I have posted about my despair and had support..

Often new threads are appearing...it seems more appear by the day..if I feel I can make a contribution I will do so..

My time and experience are limited...I do what I feel I can...

It's often not relevant to me..so I don't reply.

I'm sorry that there are members who feel unsupported..

TP is not an "exclusive club"...

If there are people out there who feel that it is..then maybe all of us who contribute (myself included ) need to make a special effort to ensure that nobody in the future feels that way....

Love gigi xx

 

[andrear]

HI there

Perhaps TP is becoming too big as I have noticed myself in the short time I have been online that there are lots of new users including myself.

Maybe time for a change in the way it is set out although I appreciate that this could become extremely difficult.

I am very aware of what I post as my situation is not just about AZ but it is also about cancer and so I have to try to keep it all to a smaller audience, if that is the correct wording, I'm sorry but I'm not much good at this typing lark!!

We all need to let off steam from time to time and pershaps a couple of other sections may help i.e. new users (whereby we can get aquainted more slowly).

However, I must stress, that I have had some extremely helpful and informative information from a number of virtual friends and indeed I have had a lot of encouragement from our moderators to date espciallly, Grannie G, Brucie and Craig. But for me, chit chat is not the reason that I came to this website and on a number of the threads that seems to be the key purpose. I came because I am desperate to learn more about my dads illness/desease so that I can try my best to be the best that I can for him both in the short term and also in the long run.

Kind regards to you all
Andrea

Amy - thank you for your support
Gigi - just keep talking babe!!

 

[Amy]

Hiya Ditto,
I havent been posting in a while....so have just been reading some of your posts to try and catch up on who you are....you sound to have a really tough job.

I already feel uncomfortable, excluded and in the dark, not to mention the "ticking off" I got for saying " ignore her"

I was surprised by this as I couldnt see the ticking off that you were referring to...but maybe I have missed it as I scanned the posts.

All I can say is dont give up on us yet...I think many of us have felt slighted at times by comments other people pass..or felt marginalised....but I think it is worth working through. You have been so supportive of other members in the posts you have made, and I am sure that you will receive the support that you need in the tough situation you are dealing with.
Best wishes,
Helen

 

[Margarita]

AND yes... my employment contract is against every rule in the book, but what am I to do? feed her to the wolves?

In South Africa, our social service structure is'nt worth the wasted paper its written on.

Now I understand why you can't get more breaks away . I Never look at what Country you was posting from .

Perhaps TP is becoming too big as I have noticed myself in the short time I have been online that there are lots of new users including myself.

Yes I agree with that , also that TP is expanding to other user in other country since I have been on TP for the last 2 years . which is good because it give us in Britain an insight in how other people cope or don't cope , but just get on with it without the support net work like we have in Britain .

 

[gigi]

TP is valuable....

I think we all do our best..under difficult circumstances.

We are people caring for loved ones with dementia..or dealing with dementia in some way...

We all come here for our own reasons..mine were to gain knowledge and support for the situation I found myself in..

This thread has highlighted the number of people who need support in their everyday lives..

Some have more experience than others...so we share and learn..

I advise anyone who has a major problem or issue to post a thread..in the main forum..or the tea room..and be specific about your problem...

We can help each other....

Love gigi xx

 

[amberence]

Hi Mark. Don't know you or the problems have but isn't TP about members making it what it wants to be, a place for carers to come in times off stress to get things off their chest, not a solution to their difficulties. I don't come on all that often as absorbed in my day, what I'm doing, caring for mum who has vascular dementia. Also if was a frequent visitor to TP find it all too depressing and defeats the object of coming on in the first place to relieve some pressure and stress caring for someone with dementia. But will say the forum does act as a safety valve when you think you are reaching the brink. When you wonder what is your life supposed to mean and about other than caring with nothing else seemingly on the horizon to contemplate about.

Before I became a carer a memeber of various forums where my interests lay and found after a while they ALL became too inclusive and used to move on to another to find the same thing.

Recently joined another as was trying to rekindle anold interest and asked a moderator to post and resize a pic for the forum unable to do myself, instead got a email reply too busy only to find logged repling to members of more, greater importance than delaing with my request. Welcomed me at the start when a "newbie" but sensed after a while didn't really fit in as all the members seemed to be professionals or retired professionals and me being just a carer (re-profile) think looked down on so I don't bother these days with this particualar forum. As with life you just move on. So please Mark stay aroud as you'll find have lots of friends on here willing to listen to you.

Keith.

 

[Ditto]

Again, I am sorry if I have caused a stir. Yes, you are all extremely lucky in the Uk and perhaps Canada, America etc. You have societies, and Social structures that have been set up specifically to deal with these disorders. South Africa does not. We do have an Alzheimers Society here but there's too much red tape... ie:- I need to talk to someone and its really important that I do so now... so I check the yellow pages, dial a number and I'm directed to three different charitable organisations, one of which gives me the Alzheimers number. I then call the number, am immediately put on hold through an automated system and I wait for up to 5 minutes before I receive a response. I'm then told that I've called the wrong branch as my area is out of their jurisdiction. I then have to start all over again. Eventually I use the internet....google alzheimers and find that I'm back where I started as there is no TP of any kind and I am instructed to call my nearest branch.

I came here to talk about Dementia, the people who have Dementia and the people who care for those with Dementia. After four years I still have so many questions... Of course I do, its an ever changing disorder that can move at an incredibly slow pace one moment then speed up and escalate the next. Although I have alot of experience, I sometimes feel very lost and bewildered and I'm not quite sure how to react to or help to improve certain behaviors. My posts and threads are not actually about ME!! and I'm really not upset or angry with my Employers, I just need an ear from time to time and perhaps a little advice from a likeminded group of people.... To be quite honest, my employers emotional contribution in the care of my patient is so minimal that they don't even figure in this conversation.

Ditto