Wonderful People!!!

I can't reply to each and every one of you, thought writing another post would be easier!

Thank you all so much. If ever there was a time that I needed your support, it was yesterday and you were all there, with your rope ladders! Today is another day. Still feeling extremely uptight, S and Ollie are both still being shouted out, but I think I am slightly calmer. The tears have dried up, so that's progress! I did sleep last night, but that may have been the wine consumed. The anti depressants will take a couple of weeks to kick in properly. Hopefully my boys can hang in there that long!

We - me, are in an awful situation, watching our loved ones suffer with this evil disease and no matter what help is offered, given, no matter what support we all receive, at the end of the day, we are all alone! The one person I need is longer at home, that I just can't come to terms with. Don't suppose I ever will! Only YOU understand that, feel that. I know lots of people go through some very unpleasant illnesses and caring is caring, no matter what's wrong, but PSP seems to have that added extra bite! Again, nobody else can appreciate!

Some of you said some very kind words about my support for them, I thank you. But as you can see, I don't take any of my own advice. I am trying to though. I have finally been offered a sitter. Resent like mad the cost, £70 for 4 hours, but I will accept it. I have agreed to try it for a month and hope the cost does not grate too much. If it does, then I'll get carers in to actually take care of S in the morning. The convene has not arrived, so got to wait until next week now.

The good news is, I have my son and his wife and my granddaughter coming for the weekend. I know a certain young lady will fall in love in the minute she sets her eyes on Ollie! I have set her the task of house training him. At least with three more sets of eyes on the "sweet" thing, we may catch the little b£&@&£& in the act, which may improve things a bit!!!

Honestly guys, you saved me last night, don't worry I was not about to do anything daft, but I get into a "bit" of a state and your support and just knowing you were all routing for me, helped so much. It's crazy isn't it, we are all total strangers, yet the love I felt from your posts to me was enormous!!!

Thank you.

Lots of love


14 Replies

  • We are like a family, aren't we? A family of strangers who know exactly what the others are going through.

    God bless you all.

  • I was paying bills yesterday. I never did this up until B got sick. He helps me but when I pay the bills it hits me. The aloness. Even just having him near me helps me. The reality that he won't always be there even in this capacity...well, I understand the chasm that you were in. I'm sorry I should keep this to myself but I don't know, the lonliness....I'm not mad I am all alone....and then there's you all and pictures of kitties and birdies and stories of holidays ....and i:m not so lonely.....

    That's all.


  • Exactly how I feel!


    Lots of love


  • yes just getting it off your chest helps doesn't it . I know I rabbit on knowing that you are all behind me

    as I type this I can feel something hanging down behind my head ,

    carers have recently left , Have to replies the hoist back into its battery , NO .. of no battery I would be in a right pickle in the morning .

    I have to have eyes in the back of my head . at least when you do it yourself you know you only have yourself to rely on , when they are two working together one thinks the other has done it . they had a new young man shadowing them as well so made three of them .

    that makes 125 different carers we have had in the two years since starting them .

    I am waiting for the results of the CH. assessment , we had a mental health Dr call today . should have had her a number of years ago .

    Johns memory is stil really good it's not being able to process his thoughts so she wants try him on Rivastamine. Apparently it can help this also help slow I it getting worse . Wonder how he would now if they had given it to him when he should have had it a number of years ago .

    it's Sod's law though when she arrived John was better then he has been for months . dat up straighter with a voice . , It gave completely the wrong impression . she did lots of test and then realised the problem . cannot always judge a book by its cover ,

    have any you got any advice on Rivastamine .

  • Heady so glad you are feeling a bit better, we all loose it, we are only human, with this illness so little is known about it, that we struggle with all new people we meet, having to explain everything, over and over again, like you say one day at a time.

    I am sure you will feel better when your family come down for the weekend, things will look different then.

    Look after yourself and I pray things will be better for you.

    Love and a big hug Yvonne xxxxxxxx

  • hi heady now that sounds much better mate its good to see you stepping up a notch mate tell s that he has to go in to respite for a little while you recharge ;; you can do it mate love to you and Ollie peter jones queensland Australia still got it mate psp bloke you have got to keep fit anyway mate otherwise you miss out on the night ha ha ha

  • Hang on in there Heady. We are all there with you, in spirit if not in body. We need a "Beam me up Scotty" transporter to swoop in where we are needed.

    Enjoy the weekend with your family. Let them wait on you a bit. Don't run round after them, after all you will have to supervise the puppy training so others will have to cook and make tea.

    Have fun.


  • I find a BBQ always works. Very little prep and what man worth his salt, does not take over. Plus they always open the wine!!!

    Lots of love


  • 🍹🍷🍔🍺🌽 👍


  • Dear Heady,

    Sorry I've not been on here for a while (turning into a hermit) - but just in case you need another dose of love & support today, here goes! xoxoxoxoxoxox


  • Dear Heady,

    So pleased to hear you are feeling a little better now, it's such a tough road to ride and we all understand exactly what you are going through!

    As someone already said we are all complete strangers, would probably pass each other on the street and not realise, but we have all become so close, true friends that are always here for each other no matter what!

    Enjoy those hours you will have to yourself and as you are always telling us do something for you, the chores can wait!

    Sending you a big hug....Pat....xx

  • Hi Pat,

    I am going to join our local gym again. We always went before. My sister and cousin go, so will try and go when they are there, for coffee and a natter afterwards. There is always the garden centre next door, if I need somewhere to wander around!

    Thanks for the hug, need all I can get. Although, I did want to get this morning, which is a first for a while.

    Lots of love


  • Hi Heady each day is different so try to take one day at a time.

    Have you been assessed by Adult Services? If not ring them, they will do an assessment, we were given 3 hours a week for a sitter (it's not means tested). I didn't like the company they suggested (and they let us down horrendously) then a friend suggested that I demand direct payments.

    This means the council pays a set rate (something like £14) per hour and we make up the difference, but we can choose which company we use (we use a sitters service from the local hospice).

    It took someone who was looking after her father and knew our situation, to give me the heads up on this because no other person had told me and it was pure luck that I found out about it.

    Worth a try?

  • Glad you a feeling a little more in control, you have every good reason to 'loose it' every now and again unless you are a saint. Enjoy having your family around and name the most of them being there. Take care. Kate xx

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