hi everyone

despite various blips this week i feel i have my mojo back!!!!! so everyone out there this is a vile vile illness but remember you are a person and deserve to live as good a life as you can as a carer, i hate that word can we come up with another? conjures up that we are all saints i think not!!!!!

have a good rest of weekend

julie (rog is asleep-again!)

44 Replies

  • Julie not feeling good since I hurt myself helping George up, been upset the last few days, I feel like I can't get out of the dark mist, washing cleaning changeing the bed every day, mopping, cooking, we can't even afford to be unwell, let's hope mood changes next week. Good weekend to you as well. Yvonne xxxxxx

  • come on now Yvonne this wont do you know that you will make yourself ill if you are not careful mate no one said it was easy this carers lark mate so you have got to stay strong for georges sake mate and please don't say that's it alright for you to talk cause I know what you are going through but theres only one person who can help you and that's YOU IF YOU GO DOWN SO DOES GEORGE MATE SO THINK ABOUT IT AND HAVE A GREAT DAY TAKE CARE YOUR OLD MATE PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER

  • Thanks Peter, you have just sopped me feeling guilty about leaving G in a care home whilst I go to Madeira to see my parents, they've just sold their house so it will be the last time I'll go (only been once before) but St least they will be moving back to the UK to be near me and my sister.

    It's hard not to feel guilty but as you and many people here have told me, that if anything happens to me, we'll be in big trouble, so best get some "me" time soon - 12 days and counting

  • hi gadgetgeek well thats good matey I know its hard not to feel guilty but when you look at it sensibly its the right decision to make mate there is no need to feel guilty about anything you do as a carer mate its a tough old road to go down its alright for a bystander to say why don't you do this and that but after doing the talking they can bugger off and leave you to it no matey feeling guilty is for the birds see yer take care peter jones queensland australia

  • I was there. Ring the doc, Parkinson's nurse, continence service, anyone who can help. Be firm about your needs to the patient and the outcome if they are not met. It seems harsh, but it is better than you being unable to care and the results of that. We love our partners but we have to be kind to ourselves too or we end up full of resentment. Sorry to preach, but I have learnt the hard way.. and I am still learning! All good wishes.xx

  • Yes I am going to start ringing around on Monday , hopefully I will feel better by then xxxxx

  • Lots of good thoughts are winging their way towards you. You are never alone. Lovely people like you are in this supportive group. Xx

  • Yvonne, are you STILL struggling alone???????

    This has to stop, you just can't do it! Next, we will be hearing that you are in hospital and George is in care!

    If you can't cope, phone Social services NOW, they have a 24/7 emergency line, for this sort of occasion. SO USE IT!!!!

    Sending lots of love


  • hi

    yvonne if you have'nt already ring social services and make a referral for both of you, they will come and assess and give you options for breaks.

    do you have a hospice nearby? again get referred they all have day hospitals which are great for both of you.

    you sound to me that you are not having the support, shout loud, there should also be a specialist nuse around grab her.

    lots of love


  • Heady have been out for our son in laws birthday today, feeling a bit better, going to get on the phone in the morning, thank you for your kind words. Have asked for help, children are there, and when we go away next week they will all see for themselves.

    Julie thank you you kind words really mean a lot to me, yes we have the nurses fron Isobel hospice come in, maybe I will ring them, as I said to Heady we are away with just our children next week, so they can see first hand what this illness has done to the dad. Love Yvonne xxxxx

  • Just had to laugh at myself. I read your post name as Julie androg. I wondered what the androg was...sounded like something from another planet. Then I read your post when you mentioned Rog was still asleep. think I'd better go to sleep, I'm losing the plot. I shall go to sleep thinking of names for us.

    Happy Sunday to you and yours.



  • Hope you had a happy Father's Day. We have had a good weekend as Colin had another birthday celebration with son number 2 and family as they were away working at a music festivals most of August. The 5 year old and his mum made Colin a tiramisu and put one of those big sparkler candles in it and once again we all sang happy birthday. I've lost count of how many groups of people have sung it to him but I'm pleased he has so many folk who love him.

    Take care Peter Jones. Stay upright.

    Nanna B and Colin 👍👍

  • yes thanks nanna b for that I had a superdooper fathers day with everyone here with me I could not have wished for better I wish I could have joined in the conversations with them all but as you know us pspers are not great conversationalists I think that we feel if anyone has to listen to us talking they would be asleep by the time we had finished our conversation . I do not know why it is on different days to the uk mate I think its the same day as japan mate

    not that helps at all anyway I hope colin is as tired as I feel so you should get as big sleep in tonight mate say hi to him for me ;;; I stopped the madopar as I felt it was not doing anything for me as at the start it was given to try and prevent falls but it was just not working yesterday I went over my neighbors house for a beer

    for an early fathers day well I had two beers and a scotch and I have not had a drink for a while when i left there my legs were

    10 feet long im sure of it I got into my house and walked up the hallway and proceeded to fall over and I could not get up again so my wife had to get on the phone and get the bloke back over to lift me up and put me to bed so that was the only fall I have had due to alcohol which I think it must have been ;;;;;;;;;; so my tally now is 71 falls since april the 5th mate which is still better than poor old jill mate I believe anyway see yer mrs nanna b and colin

  • Wow Peter Jones, I'd be on the floor after 2 beers and a scotch, in fact after the 2 beers without the scotch.

    You may not be able to join in the conversations but you can certainly join in these conversations. I'm amazed how well you can type. It's such a shame Colin hasn't found a way to communicate better. I tried to get him to be more interested in typing when he was first diagnosed but he has never liked computer or keyboard. I bought him plastic letters and a magnetic board and also flash cards but he couldn't use any of them for very long. Never mind, he can still use his thumbs.

    Have a great day/night and try not to make it 72.

    Nanna B and Colin 👍👍


  • thanks nanna for encouragement I feel that the computer is my lifeline without it I would not be able to write a letter even as my writing skills have vanished long ago im afraid so it has been good for me if I could only use the rest of my fingers it would be great and of course it would not take me so long to do but we have to be grateful for small mercies don't we mate well mate off to kip now I feel a bit weary the excitement of today was to much today I drank coke cola and sat down a lot so consequently no falls but tired yes I am @!!!!! see yer mate and colin take care peter jones queensland Australia psp sufferer

  • hyi nanna you were just a wee bit late with telling me try not to make it 72 mate cause its gone up to 73 with a big bruise on my right side good job it was not my left side matey I would not be able to belly dance see yer matey regards to colin for me peter jones queensland australia psp bloke

  • Oh dear Peter Jones. What is your poor wife going to do with you? You need one of those sumo wrestler padded suits you can get to "fight" opponents. If you fall in those you don't hurt yourself, too much padding. It would make the paramedics laugh as well when they come to pick you up. Does your wife have access to this site? If you did have a nasty fall and end up in hospital, would she be able to tell us or are we all a big secret from her?

    Take care Peter Jones.....when anyone used to say take care to my dad, he always said, " If I knew where care was I would take her". I heard it hundreds of times but it made him laugh.

    Nanna B and Colin👍👍

  • OK Peter, so you are going for the world record! We know,you can't fool us!!! But for your wife's sake, please buy the suit NannaB is suggesting!!! Take care, I hope you are feeling a bit better!

    Lots of love


  • Peter, my husband fell so many times on his noggin they made him get a padded helmet. Would not wear it out in public! Finally when he swallowed his pride and started in with a weighted walker it cut down on the really bad ones.Take care of yourself you are our touchstone:)

    Best Jayne GC

  • hi nanna b mate now whats a tiramisu is that Japanese for cake of some sorts mate but again I know that missu is some kind of soup and I cant see you standing a sparkler up in that mate so I will stick with the cake ; my japanese is more than a bit rusty that's if it is Japanese mate let me broaden that a little to somewhere in asia that colin certainly gets some birthday wishes mrs nb don't he;;;;;;; well colin lap it up mate and enjoy it so see yer nanna and colin take care you two peter jones queensland Australia still got it mate nobody want s it ah well thems the breaks this psp im talking about matey see yer

  • Hi Peter Jones, Tiramisu is Italian and means lift me up or pick me up ( according to Google). It's sponge fingers soaked in coffee and brandy, the more brandy the better. It is then topped with mascarpone or cream cheese mixed with condensed milk and finally covered in chocolate powder. You probably call it something else in Australia. I just call it divine.

    Nanna B and Colin 👍👍


  • Me toooooooooo!!!!!!!

    Lots of love


  • Happy Fathers Day!!!

    Lots of love


  • thanks heady hows it going today matey ok I hope I had a great time with the small kids all running around well I was not running but as good armchair watcher that done me in just watching matey but a great day for everyone not just me mate see yer peter jones queensland Australia a very tired psp sufferer today mate

  • Hi Peter, Not too bad. Just come back from flexing the olde credit card. Decided that it needed far more exercise than I did this morning!!! Gym can wait until my next day off!

    Lots of love


  • Heady, a bit of insomnia, reading past post when I was AWOL from this site and I came across this and it made me smile. I too have foregone exercise in favor of a little,"retail therapy" on occasion. works magic!

    Best Jayne

  • I think it should be compulsory!!!

    Lots of love


  • Good luck. Hope you had a good day. X

  • hi robbo 1 yes mate I had a wonderful day thank you very much how about yourself how did your day go ok I hope thanks for writing peter jones queensland australia psp sufferer

  • hi robbo 1 thanks mate or your reply of good luck ---- I think I might need it at some point in time take care keep smiling chin up and best foot forward mate see yer peter jones queensland Australia psp sufferer

  • I think you are a very brave guy. Just like mine. I think this disease sorts out the men from the boys. Keep smiling!

  • thanks robot for that mate have a great day yourself and tell your other half not to give in chin up matey see yer peter jones

    queensland Australia psp sufferer

  • I have just thought exactly the same thing when I read the post! How funny we didn't see it was Julie and Rog not Julie Androg!

    Love Pat xx

  • hi nannab not only does it sound delicouse but it fits me a tea mate

    tiramisu meaning a pick me up it certainly seems as if I need a pick me up with the amount of falls ive been having lately I need someone permanately to be by my side to pick me up good job i knew it was Japanese then mate that would upset the Italians wouldn't it well have to go cleaners are here to do the joint over take care of yourselves and colin old son behave I can call you son because im much older than you mate anyway colin have a great day and you nanna peter jones Q.L.D. Australia

  • Peter have a lovely Father's Day. Thank you for your kind words. Yvonne xxxxx

  • Yvonne your most welcome and I had a terrific fathers day with all my crew here with me my kids their kids and 6 great grandkids all running around all except one she is only 7 months old but it will not take long they do not stay babies for long do they matey how are you now ok I hope I expect you will have your odd days like the rest of us mate but keep your chin up we are all here for you take care matey peter jones quuensland Australia psp sufferer

  • Thank you Peter you must be a wonderful father and an even greater granddad. Children grow up so quick, you even have six great grandchildren, glad you had a wonderful day, I bet you had a good nights sleep after your wonderful Father's Day. Thank you also for being there for me, I seem to have more bad days than good days lately. Love to you Peter and sending you a giant hug. Yvonne x.

  • Hi Julie, I'm with you, I HATE this "Carer" name we all have. not only have I lost my husband, but I have lost my identity.

    New names, well MUG comes to mind, plus various others, but they aren't printable. As I have just had to stop in the middle of typing this, to change him completely. Poured a cold cup of coffee over himself. Fell asleep holding his cup!!! It only 11am and already, we are on the second outfit for the day!

    Perhaps we are Saints? After all I didn't kill him, didn't even raise my voice! None of us know what any of the recognised saints actually thought, while doing their good deeds. Certainly, I don't want my thoughts to be broadcast.

    As to having your mojo back, well done, I am impressed! Don't think I would recognise mine! You will have to let us know how it has been achieved, (or is that secret!!,)

    Lots of love


  • Heady you must have a very good sense of humour. It is so frustrating to find one's loved one sleeping peacefully, whilst their bed is awash( including the duvet) and the cup still in their hand. It has happened to us more than once. As to the Saints, I think they were just like us bearing up stoically under duress. Showing more love than anger but, being human, feeling incredibly frustrated and sometimes angry.I keep counting my blessings. I have heating, food, family , a roof over my head etc. Sorry to sound preachy but counting my blessings keeps me sane and I find it to be a great help. That, and a sense of humour!! X

  • hi heady well coffee not to bad it could have been a waste if it was a nice ice cold beer mate couldn't it peter jones queensland Australia psp sufferer

  • S can only cope with half a glass of white wine, yes to waste that, well I have to admit, most of that goes all over him, choking fit! He still the resolve to persevere with making sure the rest goes down properly!!!

    Lots of love


  • hi heady I find that white wine grabs at my throat and makes me cough I used to like a drop of chardonnay even a drop of scotch catches my breath unless I water it down a great deal mate so now I drink a dark beer name Tooheys Old which is a bit thicker for me to drink WITHOUT TO MUCH SPUTTERING AND COUGHING mate

    other than that I drink tea and have a real good aspiration

    on it but you cant beat a cup of tea can you yuk ah well matey time for me to go off with my wife to the dentist to have her 3 monthly check up so have a good one ;;;;day that is not wine mate see yer peter jones queensland Australia psp bloke regards to S for me

  • good on yer mojo let rog sleep for a while it will do you good see yer mate take care peter jones queensland Australia psp sufferer

You may also like...