Advanced care plan and LPA

Hi all

Ok now I feel like I'm going truly mental

I had an appointment with Dads GP today to finalise the advanced care plan.....but Dad cannot be definite on some answers ie DRO and the PEG and refusing medication

In the meantime I'm gonna try n do the LPA online

I had to cancel my counsellor today and it coincided with the GP, thank you very much! I really needed that appointment as had to cancel last week too!

I know I'm being selfish saying that but all I do is put everyone before me and quite frankly I'm sick of it!! How bloody nasty am I when I watch my Dad in a beyond awful state unable to do anything!!

All I want is everything in place to avoid any extra unnecessary stress for my Dad but I'm thinking Sod it, not my problem! All though of course it will be should these things be required!!

Anyway just a lovely early morning rant! Another day where I feel totally sad again and sit here and cry!! Fabulous not!!

Sorry everyone, I truly wish you all have a better day without tears or stress! Big wish I know!


19 Replies

  • Hi Satt2015

    I find ranting better than crying... but I tend to cry more. Its the way of PSP and its horrible eh?

    You'll get through, I expect you most often do. Strength to you.

    Is a hospice involved at all?

    I tell you why, they would do a contingency plan / end of life plan were he to be admitted. If you told them that you were trying to help him make these decisions they would focus on them a built and help him make up his mind on them a bit. They are usually quite good at that sort of thing and sometimes its easier for a 'stranger' to get results with these things.

    Lot of ifs there I'm afraid.

    Its a struggle.

    Wishing you some sunshine



  • Thx u Kevin

    Yeah good plan I'll get their counsellor from their hospice to discuss with dad next week


  • Hi Satt, You are not being selfish or nasty, and if you keep putting others in front of yourself you will be worn out and may even feel resentment. You need some 'me' time to help keep you sane and in order to be able to care for your Dad, so please really do try to get some.

    Hope all goes well with LPA and I hope you get that 'me' time and feel better. You know we are all here for you.

    Sending you a big hug and lots of love, Nanny857xx 💐💐

  • Satt you need to look after yourself, and get people to help you so you can keep your appointments. As the doctor said to me when she came in to see George you should look after yourself, I asked her while she was here, could she have a minute for me, I had a urine infection, just wanted her to confirm it, but she said she was too busy, for me to go over the doctors, look after myself, what a joke she could not spare 2 minutes to check my urine, went over the doctors the next day, saw the head practice nurse, she was very upset she did not check my urine. Life with PSP is frustrating, for the person with and the careers feel like screaming nearly every day. Big hug coming your way. Yvonne xxxxx

  • Thx u Yvonne

    Yep it's all wrong!!

    Hope your feeling better now


  • That's really sucks Yvonne!!! How dare your Doctor treat you in that way. How do they expect you to get to the doctors, if you can't take George!!!

    Hope you are feeling better now.

    Lots of love


  • Hope you are feeling a lot better Yvonne, sorry you got the 'brush off' from that doctor, what difference would 2 minutes for you have made in her 'busy' day. I really would like to shake them and shout "if you don't take care of me, I can't take care of PSP, then where would the NHS be". Sorry my rant is over.

    Lots of love, Nanny857 xx

  • Thx u nanny X

  • Thank you heady getting there xxxxx

  • I am standing next to you by a lovely lake. It's still the cool of morning and a nice young man brings us out a couple cups of coffee...did you want tea?..... Behind us is a lovely picnic table filled with wonderful bakery goods and fresh fruit.....Someone escorts us to a table overlooking the lake where we can place our delicious delights. After breakfast we are asked what we'd like to do today? As we think about this unusual query, the answer appears to us and almost in unison, we point to the lawn furniture with chaise lounges ! And though it is only the morning, we lie back into the lounges and with the sun shyly peeking through the lovely oak and Red Bud trees we, almost in unison fall into a deep relaxing rest where the only thing to worry about was



  • Ibirke

    Very well stated, got room for another?

    Count me in!


  • I just can't believe that the doc couldn't take two minutes when she has the evidence of your home life in front of her very eyes. To think she could even suggest you have to leave him to attend the surgery. My confidence in the human race is sometimes put to the test esp the medical profession. Good job that there are lots of lovely caring professionals to restore that trust otherwise I think we would all go absolutely crazy. Hope the infection didn't amount to much. Big hugs. Kate xxx

  • While I was in the ER (I think that is "surgery" in the UK), A man was given the room next to me. He was brought in by ambulance so there should have been a bit more concern or urgency to his needs than the rest of us who drove in on our own accord. But alas after two hours of crying and screaming the Doctor finally came to check on him! 2 HOURS . By the time he was given some morphine or something he was pleading with the drs to take his leg off! I was in my own room of horrors but I simply could not stop crying hearing the man in such agony! I will never go back to Washington Regional Emergency Room EVER AGAIN ! It's not the first time poor service was given to me but it is the last!

    After using the bathroom, I passed by the nurses station, where they were all happily chatting (Indeed they must keep their sanity) but folks ....a little help here?


  • Sorry last post was for Yvonne. Xx

  • Rant away it helps to relieves the stress and helps clear your mind. I am getting concerned that we don't have everything sorted with regards to end of life wishes and will be getting that sorted very soon. It niggles away at you not having everything written down and verified, it's a minefield all of the things you need to get in place. As others have said you need to care for yourself in order to care for your dad, easier said than done isn't it but I am learning to be a bit kinder to myself and not feel guilty. Are care and take lots of deep breaths! Love Kate xxx

  • hi

    cannot praise hospice enough for handling all this very very well i think we all don't like asking for help, i've got over that now! see asolicitor asap for power of attorney expensive but worth it.

    have you referred yourself and dad to social services? they have to do an assessment for both of you and put in appropriate plan.



  • Thx u I'll contact social services didn't realise they can help with this X

  • Hi. As the others say, this forum is here to give you an opportunity to say things that you probably can't say to your family. I am in NZ and I'm not sure if you have the same Organization as we have her. I got quite a lot of help from the Parkinson's Society and they were the ones that brought up how to handle advanced final care with us and helped us sort Out what to do. . Try there. I wish I had known about his forum before my husband died. But hopefully my experiences might be helpful for others

  • I'm sorry you didn't find us earlier, too, but grateful you are willing to share your experience. Welcome, and sympathy, ec

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