a bit wet

[Norman]

Tender Face
Quote Bruce I can't see anything more than an exchange of views.
Bruce has summed it up in very few words,nothing more than a difference of opinion.
I relate to some folks on this site some I don't and I am sure that is the same for everyone.
I am on a very short fuse these days (wonder why?) so I too write off line in case I have bitten some one through lack of thinking the post through.
There is no closed shop,how can there be when most of the people on this site have never met?
I note that Amy has posted an apology if she offended you.
Accept it and stay with us ,you are a very useful member of this site and we need you.
Best Wishes
Norman

 

[jarnee]

Hi

Hope you don't mind, but I thought I'd chip my two-penneth in here. Even though I'm quite new......I've been here a few weeks and even I have already realised that this is not the pLace for fall outs and grudges. As for cliques, I can only see people who have "known" each other for a longer time or find they have something in common ( errrr, what might that be?? ) or share experiences or a sense of humour..."Hi" to all you scousers !!

Glad you had a couple of days away, Amy...we all need a break now and then. Good-on-ya!! Absolutely nothing to beat yourself up about on the post.....your original question scared the life out of me as this stage ( I hope) is some way off for me and I REALLY don't think I could do it.....but I guess you would have said the same thing not so long ago.

Tenderface... Please come back when you're ready...perhaps you could start a new post, entitled, "I'm back" or something similar.

Enough rambling

Night, night, all

J

 

[PatH]

Oooooh

Have just read your messages and as I have just started to acces this site again I am really nervous . I think I will send you all some TLC through this message and wish you all a Happy and stress free Easter.

I do hope there are no special cliques and groups!!

Pat

 

[jude1950]

If I may just add my thoughts to this forum. Being a newcomer myself I tend to be in the background just reading the posts and taking note of anything that crops up that may help me. If I have something constructive to say I will join in. I don't think the site has a clique as such, just a core of well meaning people who are able to help others with their experience of Dementia in all its forms and extremes.
I for one am extremely grateful for all the help. Perhaps TF was having a bad day and something just struck a nerve ? Even if you feel you dont want to post please don't cut yourself off from this good source of information and support.

 

[Tender Face]

OK. I’ll post publicly. Including apologies and now I’ll probably upset yet more people. I’m sorry, Amy, if I made you cry. But you did me. I’m all for trying to make whatever laughter and humour we can out of some pretty desperate situations at times… but sometimes I find the humour offensive. (My problem, not anyone else’s – my ‘humour’ has usually been referred to as ‘warped’, maybe I’ve lost it completely?).

Aine, I’m sorry, but the ‘cat with cystitis’ scenario, I might have found funny at any other time, but when Amy’s comment had already created such a visual image of caring for my darling, darling dad – and seeing that I am about to go through all this again with mum simply WAS NOT funny. I am all for animal rights, but in comparison, humans …..

So, too the whole thread about ‘wetting’ and bothering about bloody carpets…...
Yes, I know there are the practicalities to deal with…… but when they’re gone (our loved ones not the carpets) I promise, no-one here will be worrying about which fragrance of ‘Shake and Vac’ they bought….

I’ve posted elsewhere, trying to help, about having ‘great memories’ and nothing else about my dad. Yet this whole thread took me back to a time when I was looking after dad (giving mum ‘respite’ and I spent more hours cleaning faeces from various surfaces around the house (you none of you need to know the graphics), never mind the various ‘urine’ samples he left) when he insisted he was able to ‘toilet’ himself.

Amy, I do appreciate your problems trying ‘help dad look after mum’. 10 years ago, I gave up my whole lifestyle because mum (as she was then) could not cope with looking after dad and we were too far away geographically to offer daily support.

I am JEALOUS! I am absolutely sodding JEALOUS!!! And made to feel incompetent. You have a young family, as have I. You manage to look after your young family, to have time with hubby AND to support your dad looking after your mum????. Tell me how it’s done!? I can’t seem to ‘spread’ myself around like that - and then find so much time to be ‘on-line’ on TP as often as you are? What am I doing wrong?

 

[connie]

Dear Tender Face, please don't compare yourself to anyone. You are unique, and you are caring and trying to carry on with life in your own way. We are all different, and our behind the scenes network of help is different, and our loved ones with this awful desease are all different.

We can only do the best we can, as you have been doing so brilliantly. And then we come to humour, or otherwise, and again the differences creep in.

I think we are all so afraid that we will be found wanting along the line, and the guilt monster arrives. "Why can't I manage, why do I find this so hard, when am I going to get my life back etc".

We can only ever do our best. Please do not be jealous, it will not help. I can understand how you feel, so please channel your spare emotions into helping others, as we all try to do here on T.P.

Our reward will come i'm sure. Glad you have come back.

Love Connie

 

[Amy]

Hiya anyone reading this,
TF and I have been in contact by PM, and I think that we understand one another a little better. We all carry our own pain, we all have histories that are unknown to most other TP'ers. We all have our own ways of coping with the situations that we are facing; what one person sees as a sign of strength, may in fact be a sign of weakness. We are all in this mess together though; and I for one am glad that we may now get The Porridge Jug (part IV)!
Amy

 

[Tender Face]

; and I for one am glad that we may now get The Porridge Jug (part IV)!
Amy

Was that a challenge????!!!!

Huge hugs!

 

[Amy]

I am sure that you will rise to it!

Why aren't you in bed? My 17 year old has decided he wants to discuss the meaning life!

Amy

 

[jarnee]

42 !!!!!

I think that was the answer to life and everything in "Hitchiker's Guide to the Galaxy"....if that helps shorten discussions in the early hours



Jarnee

 

[Áine]

Tf and I have also PMd and I've decided to leave. It's my human nature to throw up and then run a mile when someone has toileting problems. I'm not happy that I'm like that and I'm doing my best to overcome it. It's also true that for whatever reason (which I'm not about to share with the group) I find it much easier to love and clean up after my cat than my father. Again, it's not particularly how I want it to be, it's just how it is and I'm doing my best in the circumstances.

I'm beginning to regret ever having started this thread. I'd thought it was a supportive group where it was Ok to express how we felt, and it's true that I got a lot of support from people early in the thread and that made a big difference to whether I managed to take dad on his trip.

But I'm tired, easily hurt and more quick to anger than I would normally be. I need to be somewhere where it's safe to say what I feel and not fear some side swipe for what I thought was an innocent, not particularly controversial comment.

Best wishes to you all and thanks for the support I've had during my time here.

Áine

 

[connie]

Aine, am sending you a pm on this issue. Love Connie

 

[Michael E]

Áine hi,

I am outside all this - have not even read most of the tread - I only follow the ones that interest me and are relevant to my problems... bit selfish but it all makes me too sad sometime... can I say a couple of things ----? I think TP is pretty supportive of each other... we are alll much more sensitive than other people because our emotions are so near the surface and we are so involved in our particular problem we react or sometimes even over react or read things into posts that are not meant. I was busy being very prickly a while ago cos I was going thought a difficult period with Monique and was sometimes a bit short of rude - but I think people understood.

the other think is that **** is **** - it is really unpleasant and smells! At one stage in my life it made me want to vomit and the vision of a huge turd on the pavement near where I live - quietly steaming in the morning sun - has stayed with me for decades.

What is even worse for you is that men's **** is frequently disproportionally bigger than girls - not sure why. There is no reason at all why why you should remotely want to deal with it - not your child's or lovers or your fathers.. Its horrid. it smells and is messy - so don't. I really believe you can only cope with this illness in a person close to you if you really really want to. It must be from guilt, love, desire to please or because it gives you a meaning for this part of your life... If it is not what you want to do then run a mile.... It is a no win situation - you are sailing off into the sunset where the boat will leak more and more then sink - slowly and painfully.. so do not get aboard unless you really really want....

As for not posting or visiting on this web site... well - it would be a shame.. personally I need to hear from all sides - I am intimidated by some of the very good people here who perform well and they leave me wracked with guilt I do not do enough... and there are a few mortals here who I suspect just muddle though doing their best and trying to retain their own interests and lives and ... well anything except AD and nursing....

Whatever you choose to do you will be missed - you are needed to put a different slant on things - say different things to the politically correct - I do that a bit as well... and lest face it - there is some comfort here when you are a bit ****ed, got the blues late at night...

Forgive the long post - off to get a big drink in a small bar - with Monique I hope.

love

Michael

 

[Margarita]

Well not to bore you all, I have not been on this weekend (internet) because of my back .But


I am glad Aine started this string I also can see both side of the coin with tender face & Amy in what they said.


All I want to say is Please, Please no one leave, so what if it happen again, We our all different & that what make the world go around

Tender Face Amy you have so much experience to share with us & Aine I thank-you for the Courage to talk about this issue. Its some think I have always wonder about & have only partly Shared with someone in mum care home


Michael E

I really believe you can only cope with this illness in a person close to you if you really really want to. It must be from guilt, love,

I say from Love .

Michael E

What is even worse for you is that men's **** is frequently disproportionally bigger than girls not sure why

Nor am I ,but I have my dough’s one of my daughters use to do one that look like a volcano, compared to my son .sorry but just had to say it

 

[Tender Face]

Aine,

I would ask you to reconsider, as I did. I got hurt both publicly and through PMs and wanted to run a mile. I think there are plenty of folk round here just waiting for my halo to choke me – if only they could see how pathetic I am!

OK, I don’t do cats, you don’t do toileting. I don’t do spiders, or anything that buzzes. I don’t do lots of things, including I don’t always see the funny side of what to someone else may be absolutely hilarious.

What I am trying to learn here is to take the rough with the smooth (and I’m maybe not doing it very well), to pick out what is important to me and to ignore anything which causes me upset (and try not to react to it) and to reach out when I can identify with someone’s pain and think there may be something I can say to help.

You’ve helped me enormously, already. We might be poles apart on some things but that doesn’t mean we can’t sometimes share some insight which might help each other.

I felt just as you did – that’s it! I don’t need the hurt. I came here for help not all this s**t! But then, I had put myself into another position of ‘loss’ and I found myself ‘grieving’ for TP. A bit like a marriage/relationship I guess – it’s not all roses but dodging a few thorns seemed better than having nothing at all.

I hope you stay.

Love, TF

 

[Norman]

Aine
Don't go ,please,we need you
Norman

 

[Brucie]

I'm going all allegorical....

Anyone see the epic film "Ben Hur"? Or read the book?

I think of the span of Ben Hur's life, ups and downs, and compare that to our times.

TP equates a good deal to his time in the Roman galleys, as a chained up oarsman, kept at it by the hortator [guy with a drum who beats the time for the pace of rowing], and whipped soundly if there is any lagging.

We've all been sent to the galleys by dementia. We're chained to our oars, not by ropes or metal chains, but by love - love for our partner, parent, child, friend who has dementia. Much more binding, yet torture because we know we could up and run.... but we don't.

The hortator is the dementia, which determines when we need to feed, medicate, toilet, or otherwise tend for our loved one. Sometimes things are calm, and the hortator is beating close to a lullaby pace - we can rest a little, though we still have the oars in our hands; other times, we are in battle and the hortator is banging away for all he is worth and we are somehow expected to keep up.

All too often the person doing the whipping is ourselves; we feel we must be able to go faster, do better.

While we often can, in the back of our minds is the realisation that, while we may be able to help our loved one survive the current battle, in the end we can't win the war.

Back to reality: we're all in the same boat, like it or not. As far as TP is concerned, we all contribute to its benefits and if one person leaves TP - anyone - then we are all the worse off for it. One sentence they post may be the thing that helps someone else, in a way that nobody else can. If they are not here, they can't post that message.

We're just about to crack a few bottles of wine so I'm off for a while!

 

[noelphobic]

I'm going all allegorical....

Anyone see the epic film "Ben Hur"? Or read the book?


All too often the person doing the whipping is ourselves; we feel we must be able to go faster, do better.

We're just about to crack a few bottles of wine so I'm off for a while!

Brucie

What you get up to in your private life is up to you

Enjoy the wine - beats a whine any day

 

[PatH]

I think there are lots of situations about this disease that challenge us on a daily basis and there are things like toileting that just dont come easily. Believe me its hard enough to clean you husbands bum.
Afer many years of looking after my husband I have accepted that I just cant do everything.
When my husband was first diagnosed I was so angry not only about the disease but also with him. I'm not sure where my love was but I absolutely hated being attacked in the night by a very strong man, having all my cupboards emptied constantly . all the dining room furniture thrown out in the garden ,buckets of water thrown over the floors ( nearly as hard to keep up with as the urine )This was the night time ritual, the daytime wasnt much better. So many personal things that I just couldnt talk about in this forum. If I could manage I tried to encourge him to walk with me in the middle of the night and then he became calmer. We live in the country and we walked along the unlit roads. I did also work but had to freedom to call home at regular times.
I suppose you could say I was not very caring because I didnt give up my job but it was the only thing that kept me sane.
I had asked the consultant to find me a wife in similar circumstances to talk to ( I needed someone around my age ) he could only find one. Well ,she was a 'saint' she accepted her roll with great dignity and grace , thought I was very uncaring at which point I thanked her for her time. I accepted that she was stronger than I was and that maybe the symptons she was dealing with were more manageable than mine.
After 6 years my husband went into a hospital unit and the staff couldnt understand how he was ever managed at home. While that made me feel that at least I had done something right I was broken with guilt not only about the unit but also that I was so upset with myself.Believe me I do love him and did love him when he was at home but couldnt always feel it.
So to all you young ones with families I admire you its a tough job having to manage a family and your relative, please dont beat youselves up about what you find difficult to do ,youre not on your own.
Pat

 

[Lynne]

Áine

Dear Áine,
You're human and fallible. So am I. So is ABSOLUTELY EVERYBODY who comes to Talking Point for some understanding and to let off steam. So please, 'forgive us our mistakes, as we forgive those others who also make cock-ups or inappropriate responses through misunderstanding" (with apologies to the original author)

Nobody gets everything right or deals with every ghastly detail of Dementia which life throws at them. We get stressed, we get hurt, we get exhausted, frustrated, irritable, tearful - better that I let off a bit of steam here than explode at my Mum when she does ... (insert whatever is the latest trigger point at home) for the umpteenth time today, or that I try to find a few words of sympathy or understanding for someone else who has hit rock bottom today & had a minor explosion.

If (for instance) I post here about something which worked the way I intended it to, there are probably 49 other 'good ideas' which crashed & burned, and which I have no intention of telling publicly unless there may be a 'lesson' to be learned from the tale.
Likewise with all our individual backgrounds; I suppose I have posted here about 20% of the relevant facts about my life & my Mum. That's another 80% you all DON'T know about me. And that's fine, this is a voluntary public forum and we would be unwise to give out a huge amount of personal information not relevant to our problems caused by someone's dementia. We don't know each other; we just know a small part of someone's circumstances and difficulties. So we shouldn't expect to offer or receive "best friend" treatment & understanding.

Please stay around; your loss is our loss, and vice versa.