I'm sitting here feeling really wound up!

I'd like to just chill out in the living room and watch something apart from the bloody olympics but every time I attempt to turn over, bugger me, dad wakes up and wants the Olympics back on!

I'm also thinking n looking at getting a new job because I gave up my job last year to help care for my dad, but now we have carers and quite frankly I need to be busier n equally earn some wonga!

So basically today I'm just being a moody cow, very tired, and generally fed up with everything!!

So now I'm gonna put my nose in a book whilst I await your replies, sorry for my moan!!


68 Replies

  • Moan away. This afternoon a friend just called round unexpectedly and we were having a moan about paying the TV licence and this year all we seem to have had on BBC is sport. Neither of us like watching sport. I like to hear who has won medals but not sitting for hours watching them.

    I don't have a TV in my bedroom but in desperation have taken my iPad upstairs and watched some catchup TV on occasions.

    Going back to work sounds like a good idea to me if there is someone else in the house to keep an eye on your dad. A bit difficult if he will be left alone though. It will be good to have something for you, make new friends, do something other than PSP.

    I hope you are reading an interesting book that will lift your spirits

    I'm going to cuddle a Guinea pig. That always lifts mine.

    Sending you a little something to cheer you up.

    💐 🍷 🍧🍫


  • Aww bless you NannaB thank you for your kind words!

    Yeah I find the constant sport a total drag!!

    Agree about the work thing and mum would be here n I really only want part time lol

    Yeah it's a good book about a group of friends that are all in the process of sorting out their different relationships and they drink wine together lol

    Enjoy your cuddles


  • The drinking wine together sounds good.


  • Yeah like your wine club lol x

  • I'm going stir crazy as well. Actually, the only thing that is keeping me semi sane, is the Olympics! Everywhere I look, things need doing, I'm too tired to even care today. Managed to get S out today, the Tesco run, poor guy, the highlight of the week, a visit to the supermarket. He wasn't up to it yesterday. Wish I could find some strength from somewhere, so I could manage something a bit more stimulating. Now he has finished at the hospice day centre, I don't know what we are going to do. But it's not easy finding the time, when each meal takes two hours minimum, plus at least two hours spent in the bathroom. Now I have to be constantly clock watching, for Dinner to be cooked and finished, before the evening Carer comes. Life doesn't get any easier does it????

    Going back to work, my brain is far to befuddled these days, wouldn't be fit or safe to even sweep the streets. I know that's just a saying, but do they still do that anymore????

    Hope you have a good book, I need to find one.

    Lots of love


  • Awe bless you heady!

    What's happened with the hospice? Did S only have a certain amount of time he could go there for? If so, I do think that's such a shame all round!

    I should have gone food shopping today, just couldn't get my backside in gear!

    I understand the effort and energy you have to use to get S out and how it then messes up mealtimes etc,!!

    Yeah the book is good n is making me switch off somewhat

    Pleased your enjoying the Olympics


  • Our hospice only offers 12 week courses, he has just finished his fourth course and I don't think they will offer another. Shame, as it was something just for him, they all loved him there, so he had a few hours each week, with lots of people being nice to him, a bit different from home, with one miserable bitch, resenting every second!!! Oh what has this evil disease done to me!!!

    Lots of love


  • Well I hope to goodness they can offer S more time!

    And I'm sure your NOT a miserable bitch all the time lol X

    Ps it does it to all of us, your not alone X

  • Heady i count my blessings and i could cry for you. I'm not sure if its because i feed Brian like a baby (every four hours) little and often. (He is unable to feed himself) and it only takes about 20 mins at a time 1st feed at 6am last at 10pm. I think if it took any longer i would hit him over the head with the plate dinner or no dinner on it.

    Big hugs Janexx

  • Been VERY close on more than one occasion!

    Lots of love


  • Waiving at you Heady,

    I know it's not much, but Liz and I are in your corner.

    You have given us so much good advice and are often quoted in our house.

    Wishing you all the best.


    Kevin and Liz


  • Thanks!

  • Well my highlight of the day was putting the rubbish out lol I did roast a chicken but that left me a tonne of washing up!!!

  • Sorry to hear you are so tired but not surprised. C is no-where near that. In fact he eats quite well, just cut up small. But it is so boring hanging around waiting, with no conversation. I could scream at the limitation to my life.

    love, Jean x

  • I think I am past screaming!

    Lots of love


  • I have taken to reading the newspaper while I feed him; it's the only chance I get, anyway, and it gives him a chance to swallow one bite before I'm knocking at his teeth with the fork with the next! I feel rude reading at the table - not how I was raised! - but needs must or go mad! And sometimes it gives me something to talk to him about.

  • Oh yes I remember those days when B was still eating er choking down his foods.....It was long and arduous and scary.....doing heimlichs like at least once per meal! and not doing them well might I add...Dr said I was too small tp be effective ...true, but I gave it a go....Now each meal takes about 15 to 20 .....B does not eat anything; it is all Peg feeding. The worst part is that sometimes the stomach fluid leaks out due to the cap being off tube, but that's not even bad when compared to vomit! enough of htat

    On to books.....My husband is an "avid reader" I asked him for one and reminded me of the one we read/listened to driving to Arizona, about 1200 miles (1900 km)...John Grisham the Litigators...very good book...kind of fun and dramatic . I really felt the inner walls of a couple of two bit lawyers trying to strike it rich... Not a hard or heavy read...certainly one that took us to AZ in no time flat!

    Heady if Grisham isn't your cu[ of tea, let me know , B has an amazing list in his read.


  • Yes, love Grisham, but have read most of his books. Wilber Smith is one of my all time favourites, I have re-read every single one again and again. Need to find a new author and probably get a Kindle, house is overflowing with books.

    Lots of love


  • I have generations of dust mites living within Bruces collection of books! He used to work at a book store. Right before he was diagnosed , he thought he might try his hand at his own book store...We were just about to settle on some real estate! So you can imagine how many books we have!!!I took several cases back up to the book store that were bought either there or on line etc....they took most of them so I was quite grateful....Salvation Army took the rest....That was one shelf,,,,Now the next 4 shelves...these have a little more memories to them....I'll have to close my eyes while I bag them up!! hahaha

    I'll ask Bruce for some similar genre to Grisham and Smith....


  • I'm sorry I have to laugh SATT . Just the opposite is happening in my house...B has taken an affinity to these disgusting little reality shows...Maybe because not enough is happening in his own house he has to go into somebody elses house and see what they are doing....I have to put my foot down for the olympics to be watched!!! hahah He is still sleeping and I did not wake him for church. He had a rough two nights so he decided to go back to swallowing Ambien...sleeping MUCH better.....And you were right AMILAZY, he has gotten more used to the BPH liquid drug...It is doing it's job and urination is back on track....Woohoo WeeWee!! Valium not so good that's why he's back to the Ambien....I don't like Valium as a matter of practice anyway so im ok if he doesnt take it.

    Early morning rains leading to a beautiful cool and sunny day...


  • AVB

    Now you made me laugh!

    Thank you! 😆

    Give me the reality programmes any time over the Olympics lol


  • hahahah I'll trade you old men B would be happy as a clam (huh?) if he could watch those seedy shows!!!hahahaha


  • I am editing my last post to continue my thought...Do you now have enough time to get another job...Can you get your old job back? I hear you, about wanting to go back to work, My friend told me I should teach in a charter school. You can do it on line and It's only for specific times in the day .....I really have not looked into it...but I would love to teach science or history and geography...I'm not really comfortable with the computer but it may be a great way to earns some....wonga :) Maybe a computer job would suit you as well..... Stay close to dad but have something besides PSP to do???

    Well good luck with all of that...and remember only ( i couldn't find how many)...days left before olympics are over...


  • Lol AVB no I don't really have the time but part time I'm thinking I could n need to manage!

    My old job has been filled 😞

    Yeah why don't you look into a lil something too? All that wonga will help!


  • Believe it or not Heady, it can get easier....well different. I could have written your post 6 months ago, but now things are much easier. Have you ever done your grocery shop on line Heady? I only took C to the supermarket once after he got his wheelchair. We tried out one of those baskets you fit to wheelchairs but it was a disaster. The wheels locked so I ended up on my knees in the supermarket getting them moving again. Then the basket wasn't big enough and I couldn't get the shopping back to the car. That's when I started ordering food on line. No more lifting heavy shopping and if you don't request bags, the groceries are delivered to your kitchen in boxes and the man helped unpack them. It's a shame he didn't put it in the cupboards. I'd pop out when the sitter was here and do a small shop but everything else was on line. Feeding would take me two hours but the PEG has stopped those mammoth sessions. I can now connect it to a pump and am free to do things around the house for 4 hours at a time, 8 hours with certain feeds. As I only buy yoghurts and puds for C to have with his tablets, I'm not buying other food as his is all provided, delivered to the door so I go to the shops now. I take a list and am in and out in no time. I've lost a stone and a half since the PEG as I'm only buying food I eat, not high calorie food Colin needed and I ate.

    I look back at those times I went through, what you are going through now, and wonder how I did it. Obviously life isn't easy. I was changing all the bed linen and C's night wear as he was soaked in saliva and sweat at 4am this morning and changed them all again at 8 am for "other" reasons but life for me is easier.

    So I do feel for you Heady and am sending you a great big hug.


  • I meant to tell you how trim you were looking !!!

    love, Jean x

  • He he! I don't expect folk to notice but thanks. I can now run up 8 flights of stairs from the underground carpark to the shopping floor without getting out of breath. Won't do it very often though.....doesn't do my knees any good.

    Have a good day in the sunshine.


  • Why is life so cruel? I don't want S to have a PEG, just to suit me, but I really am running out of, well, everything!

    Thanks for the hug!

    Lots of love


  • No Heady, definitely don't have PEG to suit you. I've posted before, it was a hard decision but it was because in the two hours a meal it took me to feed C, he still wasn't getting enough to sustain him, was losing weight and developing horrid pressure sores. He would have deteriorated horribly but still lived for a long while if he hadn't had it. Within two weeks of fitting it, his sores healed, he had gained weight and I wasn't so exhausted as it gave me 5 hours a day I didn't have before. I still give him sweet treats, yoghurt, mouses etc and it's good having that time together. The most important thing was that he indicated he wanted it fitted when asked. Sometimes now I drag my recliner to the side of his bed and sit close to him while the machine is on and we both doze with the French doors open and the birds outside singing......then the phone usually rings but, hey ho, a couple of hours of bliss if we are lucky.


  • I've tried to suggest to my guy that he might want the PEG at some point, because he is losing weight now, despite all my efforts to keep the calories going. He isn't talking much, and all I have had for response is a slight stiffening and recoil, and a refusal to engage. It will be up to me. Your example is the one that has made me consider his having one; otherwise I would have said no. (As I have often had cause to say, I love this community. I have learned so much!)

  • Colin said he'd have one when needed from the start. I said I wouldn't want one and was dubious about him having one, prolonging life etc. I don't regret it now though. I've just fitted him up to the machine and asked him if he is pleased he had it fitted and his thumb went up.


  • S has already said he will have a PEG. Waiting for an appointment to have a video thingy to check his swallowing. Think it will have to be rushed soon, S seems to not know how to swallow, when he does, everything is fine, now he is on puréed food. But the last couple of days, it's getting harder and harder. He is still relatively fit, looks well, I don't think he is losing much weight, but it's hard to get him on the scales, needs three people. Is Colin in bed when you feed him? I was told S would have to be sat up right! A machine to pump the food into him sounds bliss.

    Lots of love


  • Funny how our definition of "bliss" has changed, eh?

  • Just looked up the definition - " perfect happiness, oblivious to anything else". Well, I am permanently oblivious to anything else, except £&@&&£&&@&£ PSP, perfect happiness? I am a push over these days, two seconds of not thinking about, you know what, is top of the list!!!

    So I guess, we live in a fairly blissful world, lucky us!!!!!!!!!!!!!!!!!!!!!!!

    Lots of love


  • He has to be at about 60 degrees so not bolt upright although he can be. He is fed in bed if indoors but I also have a backpack so if he is in his wheelchair in the garden or elsewhere, I can take the pump and feed when we are out and feed him on the go. It fits on the wheelchair. I can go into restaurants or pubs with him and no one knows he is being fed and I can eat undisturbed. Some people feed throughout the night but daytime suits both of us.


  • Moan away.

    Wot Olympics ;)

    Don't put your nose in a book - try one of these:

    More comfortable.


    Good on you for balancing your carer life.

    I do hope tomorrow is a little better



  • lol Kevin, very funny X

  • Hi Kevin, years ago when I borrowed a book from the library, I found a bookmark still in it....a dehydrated rasher of cooked streaky bacon. Put me right off reading the book.


  • Just the story is enough to put me off... what a rather weird previous reader!

  • That's what I thought. I love books (love the wrong word but you know what I mean) I can't even turn the corner of a page down or annotate. If I had a annual given to me at Christmas or birthdays when I was a child, I wasn't allowed to do the quizzes or colour in the pictures on the colouring page as it would spoil the book. I let our boys do theirs but still didn't really like seeing them doing it. Strangely enough, the only book I do mark is my bible which has highlights, notes and comments all over it. I'm weird!


  • Yak x

  • I used to say everything is better with bacon - There's an exception!!

  • 😄 X

  • Actually I like the olympics, not all of it, swimming and diving is my favourite, and quite a few of the other events. It is tiring, George has been coughing a lot, our speech therapist is on long term sickness, so waiting for her replacement, only to be told there was a backlog, so we had to wait, which hopefully should be this week, hopefully. George is getting a new wheel chair on Tuesday, just hoping it will fit in the car!!!!!! Can't afford to change the car. Also feeling down, George is constantly calling me, wanting to go to the loo, but doesn't go. He has had another urine infection, so not a good week last week, hope this week is better. Oh sat think it would be good for you to get a part time job, if you don't mind me asking how old are you, you need people of your own age around you, so you get away from the horrible PSP for a while, I am sure your mum will cope. Sweet dreams to you all Yvonne xxxxx

  • Thx u Yvonne

    I'm 48 going on 68 lol

    Yes I'm looking around for something part time, I'll let you all if I get something,......

    This Psp life is so tiring isn't it? And so mentally and physically and emotionally draining!

    Let us know how you get on the wheelchair X

  • I'm 67 going on 97! 😂xx

  • Lol pat! X

  • Get some life for yourself !!! If your mum is there it allows you to find your life again.

    Go girl.

    love, Jean x

  • Thx u jean

    A life? What's that? Lol xx

  • I don't know, but everyone keeps talking about one, so if you find it, let us know!!!

    Lots of love


  • Lol heady I will X

  • At least the Olmpics are on and somethings to watch . Nice for us who can't do anything else but wait for a miracle which is taking its time.

  • I was so grateful for the 2008 Olympics because i had my leg in plaster and was awake more then asleep so i think i watched most of it. Was busy for the 2012 show. But i have enjoyed this years just watching bits of it when I've got time to do so. And its something that doesn't take much effort to keep up with whats going on.

    Brian gets all emotional when the meddle winners are crying and laughing (hard to feed him when he's crying with the winners)...


  • That's actually kind of sweet. I wanted to see gymnastics and somehow I missed it:( seems like every time we check in its table tennis or something equally as weird. Half the events I did not even know about. Better than the biased " new" station my husband wants to watch incessantly. Sick of hearing Trump sound like a raving idiot! Anybody from the states with me on this?! Jayne

  • Oh how I wish I could go back to my working days, surrounded by chocolate ( I was the manager of a Thorntons store). Now I'm surrounded in something a similar colour but not edible!!😂

  • Awe pat!! X

  • Oh pat you made me laugh, xxxxx

  • INoella21

    I know now the feeling. My husband wants to watch something different than me all the time. Sometimes I let him watch his Olympics live stream on a laptop. Than I can watch tv. A couple of weeks ago I had to get another tv installed for the overnight caregivers. If one needs someone for a 24 hour shift here you need to provide cable TV innternet give them both a 4 hour break and 8 hours of uninterrupted sleep. What is the point? On the upside now I have a guest room with a TV at my disposal. I am loving it. Scrapped the overnight shift.Hope you feel better tomorrow. The Olympics should be over soon.

  • Thx u for your reply noella

    I do feel a bit better today as I've kept myself very busy, shattered now lol

    I think I'll visit your guest room lol


  • Oh Satt I'm definitely feeling your mood, it's normal and your not moaning that's what this support group is for.

    Maybe a part time job is what you need just to have abit of normality for a few hours xxx

  • Normality??

    Love that 'idea'!

    How's your mum today Richmond? X

  • Hi Satt, she still not right remains vacant she's also started with diarrhoea (sorry probably too much information lol ) I've asked her again about getting dr or speaking to palliative care nurse she said a clear no, which surprised me how clear she sounded. Just need to sit tight n wait. As we all know tomorrow's another day and she could be fine xx

  • So hard Richmond

    Hers hoping today's a better day x

  • Oh Yes I hate these Drawn out olympics can't we just have highlights! As he always was Des is in heaven watching sport but better company now for him.At least he doesn't have to listen to me moaning about all the paperwork he hoarded The house is getting lighter and lighter! Specsavers had 9 pairs of his glasses to recycle yesterday and the Charity shops are about to put up NO MORE signs I suspect.Anybody on this site a Jussi Bjorling fan??I have so much stuff of his

    Great weather here hope you are all sharing,Pxx

  • Eewwwww, cannot believe you said that but pretty funny.

  • Satt, I have been contemplating the very same thing but with what we have to pay carers , I would not even break even. But it would get me out of the house! I have vowed to start exercising again and try to get out more. Just always feel so guilty when I am out trying to have fun without him. Went to an outdoor concert this weekend with friends and picnicked and drank lots of good wine under the stars. It was heaven but he would not even acknowledge me when I came home. It felt good not to have any responsibilities for an entire evening. Forgot how that felt. Do what you need to do to keep going. Being replenished does not do anyone any good.

    Glad you are feeling better!

    Take care & big hugs, Jayne

  • Awe Jayne it's so unfair that you can't get out to work as you wouldn't even break even!

    I think we all feel guilty going out knowing our loved ones can't 😥 however hard it is I think its vital

    I'm so pleased you had a lovely evening sounds wonderful


  • S, it was.

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