Dare i dream

So far this week we have had the hospice key worker the speach and language therapist and now the community matron and they have all said wow don't you you look well Brian. And at the end of the visit they have all stated that he is doing well and are pleased with him. As much as I'm pleased with how things are going at the moment it scares me because I keep thinking is this the lull before the storm. Janexx

33 Replies

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  • Married life must be suiting him Jane! Hope you are looking just as good!

    What ever is going on, enjoy it!!! Even if this is not a lull, you know a storm will be winging its way to you soon enough!!!

    Lots of love

    Heady

  • Hi Jane as Heady says enjoy it, the hospice nurse came in the other day, she asked George how he was, he told her he was going to die soon, I said don't be silly, felt really sad, this illness is so horrible.

    Hopefully the weather will get better and we can get out in the garden, we have lived here for about 15 months, with not being able to go away I thought lets do the garden, it has been a bit of a nightmare, summer house came today, they could not get it up the drive, so the left it at the end, it has to be put together which is happening next week, my son said mum lets bring it in so we unwrapped it and it was loads of wood panels, it took Peter sammie, and myself 2 hours to bring it up the drive and into the garden, it's was hard work, George watched us from the patio door. Will put a picture on when it is all done, hope you all have a lovely weekend Yvonne xxxxxxxxx

  • hi mate I went to the dentist yesterday and she said to me I hope you feel as well as you look which I thought was a nice way of putting it and matey don't go down that road of thinking of things before they happen have a great time now take care and say hello to George for me peter jones queensland Australia psp sufferer

  • You are a good courageous man Peter...much like Madeline...keep it up ,love to you both Rollie

  • hji rollie hows it going mate ok I hope with you well matey the days and weeks just keep rolling by don't they ]]]]] it wont be any comfort to you mate but it will get a bit easier as the time goes on its waiting for the time to pass thats the problem anyway rollie I will not dwell on that subject Well mate hows it going with you

    in yourself mate have you joined any clubs or anything

    yet or done anything interesting over the past few weeks well mate your a champion and don't you forget it see yer mate take care of yourself peter jones queensland Australia psp sufferer and not very courageous but thanks anyway

  • hi Peter,reading your mail makes me cry because I see the same strength in you as was in Madeline.....as for myself it has not gotten any easier,it,s hard to loose 99% of yourself and go on,I pray for better days and for you,thanks for thinking of me,love to you and yours ,Rollie

  • HI ROLLIE I CAN UNDERSTAND YOU MATE I KNOW WHAT IT IS LIKE TO LOSE SOMEONE WHO IS VERY DEAR TO YOU ROLLIE BUT YOU WILL NEVER FORGET THEM BUT AS TIME GOES BY IT WILL EASE THE SUFFERING THAT YOU HAVE NOW

    I CAN TELL YOU THAT FROM EXPERIENCE BUT YOU ALREADY KNOW THIS I AM DEEPLY SORRY ABOUT MADELANE MY FRIEND AS I FELT AS IF I KNEW HER THROUGH YOU ANYWAY ROLLIE IF YOU WANT TO TALK ABOUT HER OR JUST HAVE A CHAT IM NEARLY ALWAYS HERE SO STAY IN TOUCH EVEN IF ITS UNTIL YOU FEEL A LITTLE BIT STRONGER IN YOURSELF SO MATE TAKE CARE OF YOURSELF YOUR OLD MATE PETER JONES

    QUEENSLAND AUSTRALIA IM SORRY IM NOT GOOD AT WORDS ROLLIE BUT I KNOW YOU WILL UNDERSTAND HOW I FEEL FOR YOUR LOSS MATE SEE YER MATEY

  • hirllie hows it going mate silly question I know but I had to start somewhere mate I don't suppose you feel like joining any clubs or do you do, enough of getting out matey but its not the same anymore is it my friend well rollie this was just to see how you were getting on mate and how you are doing ======well I hope rollie

    well mate take care of yourself and best foot forward my friend see yer peter jones queensland australia

  • Hi Peter and your lovely wife....after it has been over it,s much like having survived a train wreck but wishing I had left with her...love to you both,Rollie

  • Thinking of you Rollie!

    Sending lots of love

    Heady

  • Thank-you Heady,hope all is going along with you,love Rollie

  • Hi Rollie, we are surviving. Don't tell anyone, but I've actually had a couple of nights sleep. Works wonders, doesn't it!!!

    Lots of love

    Heady

  • hi rollie thanks for em mate I m afraid that is something we all have to go through on our own mate ;;; I am dreading the day when it comes but it will come no doubt about that I am sorry to hear you so down

    my friend I wish I could do something to,take the pain away from you but I cant

    but take care of yourself mate from nova scotia your a champion peter jones queenskland Australia psp sufferer

  • HI ROLLIE

    OS SORRY YOU ARE STILL MOURNING MADELINE SO MUCH = BUT NECESSARY AND THERAPEUTIC I GUESS IN A STRANGE WAY

    I AM THINKIGN OF YOU AND HOPING YOU WILL HAVE SME BETTER DAYS SOON1

    LOL JILL

    HUGS AND XXX TO U AND YOURS

  • Thank-you Jill...Madeline was the whole world to me,...thank-you again,Rollie

  • Good on you Peter - words of wisdom .I went to the dentist last week and he reckoned my teeth were more his than mine !

    Georgepa

  • hi georgepa I am not surprised the prices they charge even if you are in a health scheme like us it still costs you money iv e always been a bit wary of dentists ever since I was in the army and I had one there he must have been a butcher I think ;;; now how are you getting on with this caring lark its not much fun is it mate but better days are ahead I can feel it in me water so stick with it mate and remember that you are needed more than you think you are mate . thanks for the mail it was much appreciated. and with thatr I will say see yer mate take care best wishes to the other half mate peter jones queensland Australia sufferer

  • Hi, Jan, I feel exactly the same. Its sometime an effort to enjoy NOW because you're afraid of the dread which strikes when it goes wrong again.

    Chris is always better when he sees anyone. He saves the difficult bits for me !!

    Enjoy !! Jean xx

  • Jean isn't it strange how they are when people come in? George also chats away to people and they always say how well he looks, but is often difficult with me, are they all like that? Our maybe he is just fed up with me!!!!!!!! Have a nice week end. And love to you Peter Yvonne xxxxx. I admire you so much Peter and Jill you are amazing people sending you both a big hug xxxxxxxx

  • hi Yvonne well mate hows it going ok I hope thanks for the hug it was appreciated in your mail you asked

    if we were all like that but what I think it is in front of other people we try and appear normal so you might feel left out of it a bit mate cause we are busy feeling full of ourselves and trying to act ass if nothing is the matter with us its not that George feels any less about you im sure he loves you very much even if he does not say so you know what us blokes are like matey

    so do not worry over things like that mate that george is getting fed with you im sorry but I will have to close now as i am having a bit of trouble with my eyes but nothing to worry about peter jones queensland Australia psp bloke hi George hows it going good I hope see yer take care matey peter

  • hi yvonneandgeorge

    thanks for ur kind reply but we are not SAINTS yet are we??

    i fall over too many times in the day - SOME ARE AVOIDABLE., SOME NOT - and my partner hears the crash and ignores it apart fm if he us still in bed saying "be careful " which has nothing to do with it as i just freeze and then fall over (fwds usually) and then backwards or sideways whilst trying to right myself but so far no more broken bones so I AM GOOD!

    lol jill

    :-)

  • hi jill i think I got your em instead of Yvonne and George mate unless I am supposed to get it im blowed if I know anyway mate its good to see you still have your sence of humour mate but sorry to hear that you are still falling the same as me I went over again this afternoon hit my head on the brickwork of the house put some antiseptic powder on it but have a bump and some blood there ah well never mind cant be helped see yer take care peter jones queensland Australia psp sufferer

  • TA FOR THAT PETER

    I DID NOT KNOW THAT COUDL HAPPEN EIHTER

    I FELL ON FRIDAY EVE OUT OF BED ND TRAPPED MY LEFT ARM BETWEEN THE BED AND THE GRAB RAIL I HAV E TO HELP; ME IN dAND OUT OF BED = WA TRAPPED FOR A minute and then freed myself - result is MY HAND IS USELESS MAKING TYPING EDVEN MORE DIFFICULT AND I HTINK I HAVE TRAPPED A NERVE IN THE SHOULDER OR NECK AND THE GPS R OFF TODAY )BANK HOLIDAY IN ENGLAND) SO DHALL HAVRE TO WAIT UNTIL TOMORROW TO C SOMEONE]

    TWAS EVER THUS

    LOL JILL

    HUGS AND XXX XX OT U AND YOUR WIFE

  • Hi Jean, it was good seeing you both on Wednesday and Chris did look well. He has such a beaming smile. You looked well also but I know we don't always look how we feel. Colin had a good day and I'm glad he stayed at home but I hope he can go to the next meeting. He likes meeting people even if he appears not to respond.

    I hope you both have a good weekend.

    Xx Bev

  • Hello, Bev, Yes it was lovely to see you. Chris usually has a big smile and he really enjoyed Wednesday. I always look well. Its a family characteristic. My sisters and I always moan about it. The only time they saw me looking ill was when I had my tonsils out. [ I was 21 ] and they thought I was dying and still remember it !

    In fact I am fine. Chris is on a plateau and I know enough to make the most of it !!

    I hope Colin can be there next time as its so important to still be part of the human race, isn't it ?

    Hope you have a good weekend too.

    love, Jean x

  • hi colin and nanna b just a quick line to see how you are going along matey ok I hope and no getting over the bed rails like you done in the mail before see yer mate peter jones queensland Australia psp sufferer

  • Hi Peter Jones, Queensland Australia. Hope you are OK and staying upright. No more escaping here. We have a night nurse on Sunday nights as well as during the week now so any climbing over is quickly stopped.

    Summertime is creeping up on us and we went for a walk without coats today. We walked/ wheelchaired to the local garden centre and sat outside with coffee and cake; very pleasant. Colin is now asleep after his excursion and I am going to prick out lots of flower seedlings.

    Take care Peter Jones.

    Love

    Nanna B and Colin 👍👍

  • hi nannab hows it going matey ok I hope well it sounds as if summer is on the way for you walking around with no coats on whatever next mate I am glad that you have a night nurse in that will stop poor old colin jumping out over the rails wont it plus it will give you more time to get a well deserved good nights kip mate . yesterdays fall has knocked some sense into me

    at last im up to 17 falls to date from the 5th of april so not to bad at least not like poor jill who would have that amount in a week I feel very sorry for her because it does take your confidence away from you for a while until the next one but life goes on you got to go with it or get left behind.

    hows me old mate colin doing not playing up are you mate no he said ''im as good as gold '' good on yer matey well nanna b I will close it now time for me to make our morning cup of tea

    so see yer mate take care see yer colin don't give nanna b a hard time will you where are those thumbs now matey up or down best wishes peterjones queensland australia psp sufferer

  • John is exactly the Same . it's so frustrating isn't it .

    we can have a dreadful day with out being able to speak raise his head , difficult to feed etc , The nurse or social worker comes and he is sat up looking at them and talking more clearly , Of course it's only for the very short time they are here .

    it drives me mad . I had a visit the other day with SOcial worker , we are looking at getting CHC . Of they him like this there will be no chance !! .

    they should move in with us for a week . a very different story

  • They shouldn't judge a book by its cover ,. consultants GPS and urges all say the same to John .

    take things a step at a time and enjoy the better days

  • Enjoy every moment you are together....behind the illness lies the man you love,Rollie

  • Lulls are good- long may they last - worry about the storm if and when it comes .

    Georgepa

  • HI I AGREE WIHTH YOU ALLL

    IT SI STRANGE THIS PSP IS IT NOT?

    I AM TERRIBLE AT GOIGN ANYWHERE IWTH MY PARTNER AND TEND TO FALL OVER MORE OR GRAB AT HIM TO PREVENT IT HAPPENING . IT SI V DIFFICULT AS HE HATES ME FALLING AND THAT MAKES US BOTH V NERVOUS - HE TELLLS MET TO HURRY UP AND I CANNOT DO THAT AND THEN WE ARE "LATE "

    BTU IT SI V FRUSTRATING FOR HIM AND MYSELF THSI PSP

    AND I CANNOT NOW WALK ABOUT HTE APARTMENT LIEK I COULD 12 MONTJHS AGO AND I HAVE TO SHOUT HIM TO COME TO ME WHICH ANNOYS HIM TOO . (THE SELF PROPELLED WHEELCHAIR TAKES ME FOREVER TO GO ANYWHERE)

    I HAD BETTER GO AND GIV E THE Cat his BREAKFAST NWO ALWAYS A GOOD THING TO DO BUT I DO TEND TO FALL VOER WHILST DOING IT - AND HE IS V PATIENT AND WAITS F OR ME TO GO INTO THE KITCHEN )(N MY WHEELCHAIR )

    LOL JILL

    :-)

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