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Discussion in 'ARCHIVE FORUM: Support discussions' started by Norman, Oct 6, 2004.
Glad to see you're up, running and as cheeky as ever!
you didn't say if you won at bowls.....
It was pairs and we lost.
I didn't give a hoot,I was out,free,and knowing Peg was minded I was happy.
I will win later
Hi norman,Just been reading your post along with a few others and it as just struck me how sad it all is that we are all so grateful for alittle free time, when really it should be our right surely to have a break. Ithink it sums up how low we all get when we all use the same term of being free.storm
Great to see you're back and on form as usual again. Hurray for that. I'm just hanging out till the carers get back next Wednesday....
Today I am having a horrible carer's day and I would give anything for someone else to care for mum today and I could just go to bed. Have very bad cold, nerves are frayed, mum is having one of her not understanding english days and jumping all over me for anything I say, and I am utterly and totally ****** off. Would give anything for that free time you speak of Storm, bloody anything!
Is this infection of hers never going to lift (ongoing for 1 year now).
To make matters worse the family visited yesterday and I was running around making tea, seeing to mum and sneezing everywhere. The huge ***** all sat rooted to the chairs with beautific smiles plastered to their faces, doing the old "I'm not wise" act. This entails the thought process on their behalves of: I can't see that you need help, I'm here what more do you want? They then stayed til 7pm which knocked the whole evening meal routine off and mum was becoming aggitated by all their chatter.
Plus fiance goes off on hols tomorrow and feel something nasty about it but not quite sure what. I want him to go but I think I'm jealous of the fact he can with no responsiblities and I can't even arrange a meal out. I'm a big eejit. Just feeling sorry for myself and I shouldn't because there are people much worse off than me.
Thanks everyone, feel better for venting.
Sorry to hear that you've got a cold. Always makes things worse -sneezing and sniffing everywhere, red nose, sore throat, head feeling like a turnip..... Hope it clears soon.
Chesca said something a while back, which rings true. About how the family never lift a finger to help and you wish they'd visit and see for themselves. Then when they DO visit, you just wish and pray that they would GO and not be so dumb as to overstay their welcome and upset the all important ROUTINE.
I can identify with that! Not only do they arrive all jolly and hearty as if there is nothing wrong [or creep around and whisper as if somebody has just died] - they also expect to be waited on hand and foot as well. They also stay for hours and hours until you are forced to chuck them out or offer them lunch/dinner into the bargain. More work........ They act like guests instead of family for some bizarre reason and go all coy at washing up or 'interfering' in the kitchen. Forget the 'hints' - you'd have to literally bash them over the head before they became even slightly sensitive to the situation.
It's exactly like the 'Anniversary' of Sybil and Basil in Fawlty Towers here sometimes.
Dear Magic, heres a big hug from Sussex! Wish I could give you that break you so obviously need right now too. They make you want to scream don't they, these other family members. I have several like that too. They just don't seem to get it do they? Hope you and Mum can settle down quietly in your chairs today for a while with a blanket each and drink hot lemon, (maybe a toddy in your case), and that your cold and her chest infection soon get better. These infections do seem to really get them don't they, my Mum had them too with only breaks of a few weeks in between. She had Empysema so that was at the back of it I think. Does your Mum have an underlying problem that impares her shaking it off? As for the fiance, completely understand how you must feel, again it's the freedom bit that gets you isn't it? But, you are definately not an eejit, no one that can put over what they are feeling as well as you do could ever be called that! You are just feeling low and thats understandable with all you are coping with. Hope things improve soon, love and hugs, She. XX
Dear Magic, Oh you poor love,when i read what you write it really does sound like me.When the odd son does pop in which is rarely what gets to me is that they dont take the time to talk to mum its as though shes not there ,they just want me to sit and listen to thier problems!
Try and take care of yourself keep warm have hot whisky and lemon rub both your chests with vic, the vapour rub not the man you keep under the stairs!and wave that swine of a fiance a cheery bye bye as he goes on holiday.How could he bear to leave such a beuaty as you i will never know. luv storm
Thanks folks for cheering me up, your lovely wee words and those shoulders to cry on have worked better than a hot toddy.
Mum has a lung disease called bronchiectasis, this is why we have to do lung drainage up to 5 times per day to try to clear the mucus, when it becomes infected it brings with it another infection and toxic confusion with the dementia, this is why she is so hard to place for respite/daycare etc, this lung disease has been ongoing since 1980. It seems to be getting worse each day, she picked up an infection in the assessment unit last year and it never went away. I believe all these places are overheated, the germs probably go there for their holidays! Like your beloved mum Shiela, she only gets a few weeks in between infections.
When the family come they too tend to ignore mum as in your case Storm as they simply cannot deal with it (lucky them to be able to waft away from it all) and Jude you're so right about the coy in the kitchen bit, for God's sake! Sometimes I hate to see them all coming.
I feel terrible for complaining as I have had 5 weeks respite 2 weeks ago, but it's like it never happened. I'm exhausted again, so is dad as she talks for hours in her sleep.
I'd be lost without mum but sometimes I feel lost in this world of dementia and infections with her. I suppose in the back of my mind I'm afraid my fiance will find that he's happier away from me and this universe of disease and confusion that I live in. But if that's the case, then it obviously just isn't meant to be.
Hi Magic, I understand now, it probably will be as you say, ongoing unfortunately. You don't have to be two weeks after respite to feel like you do, I remember one time, Mum had only been home 2 hours, she was totally off her head, kept going off down the road, couldn't stop her, just waited till her chest did it then caught her up and came home again. It went on till it was dark, I trod in a doggy doo, threw a complete wobbly myself and so we went into lock down! I would have happily had respite again that night!!
Family, well, you are so right, what have we got to moan about, their troubles are so much worse (I don't think!) that also goes for quite a few fairweather friends too. Don't see them for months, then when they need a shoulder or a favour, well hello!! Try not to get upset about the fella, you are obviously too good for him if he can't see what a wonderful loving person he has the luck to be engaged to that's his problem not yours! It's 3 months since I lost Mum, but what you say, I stll feel like that, guess I always will. Chin up girl, remember your an Angel in disguise really!! Lotsalove, She. XX
Dear Magical Magic
The awful feelings you are having about Rhett and the holiday could well be one big, unvoiced, massive resentment - and we all know what damage they can do. Resentment at his freedom to leave at will, resentment that he actually will go and leave you despite your protestations that it's 'fine, really, yes honestly, you go and enjoy yourself' when what you really want to say is........ well, whatever it is you want to say but it's actually the opposite, and because you're a people pleaser (qualification: caring woman) you can't. Don't want to appear too needy, emotionally dependent, are some of my experiences. Truth be told, at my most vulnerable I even resented that JJ went to work on a daily basis.
Stuck at home being nurse to a patient for whom there is no cure and the horrible reality that this is as good as it gets saps your confidence for starters, then you don't like yourself for thinking like this, so the next thing in your head is: if I don't like me why would Rhett? I think I've said it before, What makes you think you don't deserve to be loved? Your insecurity because of the sometimes hopelessness of your lifestyle? We all need a little joy in our lives - wall to wall sxxt gives you nothing to look forward to. Even the fact that your lovely Mum was in respite for 5 weeks means nothing in the overall picture - once she's home you know the whole thing is going to continue as before, nothing has changed.
Perhaps next time Mum has some respite care, you and the boyo could take yourselves away. You don't have to go too far and for too long - a weekend, overnight stop somewhere - just a change of scenery and you've got enough of that on your doorstep. I know it's a tough thing to do: I well remember the first break we took after Mum went into a nursing home and I had to leave Dad on his own: I cried for 350 miles there and suffered terrible guilt despite Dad's reassurances - and this was only a weekend. But, you know, when I got back everything was still standing, nobody was dead and....... how dare it be so without me after all the angst of going away!
Then there's the sibling resentment! I couldn't speak a civilized word to either of mine for quite a long time. One once said 'I suppose you must hate me' and once I had said that actually, yes I did, very often, I got some positive feedback and some changes took place. For instance................and I can't wait for this.................I mentioned the royal visit in another post, your Blessing on TP I think.
They will time their separate arrivals to coincide as close as is possible, they will shop and then they will shop some more. One sister has a kitchen the size of an aircraft hangar - dad's is the size of a barbie doll house, and she will fill it according to her 747 mindset until you can't move. She won't cook much and what she does cook you wouldn't want to eat but she'll try and we'll go to the chippy on the way home! The bags, the bags! the whole house will look like the departure lounge at Heathrow during an air traffic controller strike. There will be bought all manner of luxury foods and sundries that will eventually end up in the bin or be left in the cupboard for months - anybody want to buy a tin of chestnuts, jar of olives filled with smoked salmon, the kind of things Dad always has on his shopping list!!
And then they will leave with an 'I do feel awful leaving you with all this', the 'this' being the looking-after bit, and I will say that it's OK and not to worry about it, wave them off with a two finger salute and re-enter the portal to begin clearing up the mayhem! What was I saying about unvoiced resentments?..........
Me? I can't wait!
A small consolation: although you feel there is little joy in your life at the moment, take comfort that YOU ARE A JOY to be in the company of on TP and from the fact that you have a talent for just being there at the right time with your wit, poetry and obvious lovely self. You didn't come to be called 'Magic' just by accident!
Lots of love for now
Guys can I break off my engagement and just get engaged to the TP? Do you think it's legal? No one NO ONE! understands me like you guys.
Chesca that was bloody spooky! I know it's coming up to halloween but being able to read my heart like that. Bit like that song "Killing me softly"
"Telling my whole life with his words" I think you just managed that! We are all so alike on this site. One breed it seems. The people pleasers.
And yes I do resent Rhett's freedom! There. I've said it!
Would like to talk more but have to make dinner now and medicate.
Hmmmm.....You callin' me an awld witch?
Chess, if the pointed hat fits.......
Hats and fats
Nothing bloody fits. My weight is up and down like a lady of the night's drawers. One week I eat OK, the next week I can't be bothered - here a snack, there a snack everywhere a snack snack, all the time insisting that everybody eats properly. It's the gin and scones scenario again! I should try the tinned chestnuts and salmon stuffed olives!
Good news is, per my previous post, I should eat very little over a long weekend commencing Thursday night but should be drinking a fair amount of wine free of charge- given the contest between the visiting siblings and their vacuous arguments about wine purchases - one's married to a frog who laughs at the English bull.. talked about wine (on this I adore him otherwise can't stand the selfish twonk, or should that be Le twonk) so she gets all francophilistic (is that a word?) and the other is busy telling Madame Le Twonk what she doesn't know, which apparently is loads. If I had a glass eye they'd put it to sleep.
Families. Who'd have them?!!!!!!!! Lots of people apparently, which is why we're all in this whole shambolic state.
Just off to have my head filed down a little. There's nothing wrong with last year's hat that a little filing won't fix.
Many good spells to you
Sheila, it must be very difficult for you, 3 months is only the blink of an eye, it's so lovely that you keep encouraging others, you obviously have a big heart and your mum must have been a special lady to evoke such love and devotion, and spawn a gem like you. They say a mother holds her child's hand for a little while, but she holds your heart forever. I'd say that's very true. People are always telling me to do this and that with mum etc as I have my own life. It's not that easy and it's not how I want it. I know lots of people on TP, including you will understand that. It's just so damned hard, and the hardest part of all is watching the suffering and no matter what you do, nothing helps her. Today has been long and hard, as it has been for most carers reading this, I'm sure. Some days stink with a capital "S"
Chesca don't talk about the eating thing. I have eaten enough in the past 2 months to feed a small continent. Am in and out of the kitchen like a fiddler's elbow.
I have a bad day with mum and I'm ringing the chinese takeaway and raiding the biscuit tin. Chinese fella on phone said to me last week:
"Ah, this is very good customer."
Was scundered! Had to ring a different chinese last night for appearances sake. Don't want my picture plastered behind counter as
"Pig of the month"
There you again, you see, with all the beautiful truths.
Mum always held my hand, both methaphorically and physically. She it was who through her love kept me alive when I was very small (2 years old actually) and I always try to make sure I do the same when I'm with her. This is my bond and the drive that makes me fight for her at every turn at every corner: when she does or says 'whatever' I understand without her saying. I know. I always hold her hand and so does Dad. When I was stroking her arm yesterday, she smiled and,....I don't think I can talk about this, too sad. Effing tears again!
Sheila, in your sadness at the loss of your lovely Mum, take some comfort that you were always there for her and returned her love and care with the love and care she had showed to you. Be proud of that, as I am sure she would have been proud of you.
I've just started reading The Selfish Pig's Guide to Caring. Get it now!!! It's just 'Yes, Yes, YESSSSSS...!' on every page. There's also lots of stuff about how to deal with resentment, how to refrain from shoving your loved ones down the stairs, how to prevent yourself from jumping off the roof, etc. Also loads of snide comments about the Govt and Carer's Assessments......
There's also a bit about the fact that if we carers formed a union and went on strike, then it would cost the Goverment around £56 squillion pounds a year...... Food for thought, indeed.
It's the BEST carer's book that I have ever read .... and it's very, very funny. I actually woke up this morning feeling a whole lot less depressed about things than usually.