fighting everyone

Why do we have to fight everyone? Why do we try and fight Psp?

Why do we fight with chc?

Why do we fight with district nurses?

Why do we fight with the gp's?

Why do we fight with all the services that are supposed to help us and don't?!

I went to bingo tonight, had a good laugh with my friend, didn't win, but did have a laugh along with 🍷, came in, 5 minutes after night nurse visit, mum told me one of em started rattling on about child convenes for dad, cutbacks, blah blah, asking if he has chc (you'd think she knows he HAS) after coming here for nearly 6 months!

I hate how "these" people come into our homes and start talking in front of a very very poorly patient as if they weren't there!! Next time I see "that" nurse she'll wish she'd kept quiet! As with the carers I treat the night nurses (mostly) with utter respect and often buy them chocolates (why do I bother)?!

I'm sick of fighting everyone, I think it only all of us on here that truly understand how bloody hard everything is and these so called professionals just seem to aggravate everything!

Rant over, for now.........x

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I meant to add I suppose we all keep fighting to keep our loved ones as comfortable as possible but why should it be a constant fight?

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Do you know what our lives have been taken over with PSP, people don't know about it, so we try to explain, to everyone what a horrible illness it is, people are so busy with there life's that they have not got time, feel like shouting from the roof top, hey look at us trying to keep our loved ones safe, looking after them, fighting our way through paper work, running here there and every where.

Glad you had a good time at bingo, the main thing is you were able to go out and laugh and have a good time, and forget about PSP . Sending you a big hug. How would a child's convene fit an adult? So bizarre !!!!!!! Yvonne xxxxx

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Sorry Yvonne am laughing exactly how would a child's convene for an adult? These people soooooooo don't get any of it!! X

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Ps Yvonne I did forget about Psp for a while, well not forget completely but push to the back of my mind, after all there was a while £20 to be had lol x

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I don't know Amanda! It really is pants. I am so so tired of it all, getting to the point of why should I! S is being awkward over taking his meds and food, if he can't be bothered why should I get my knickers in a twist. I am the only person who cares about him, nobody else gives a damn, yet I am the neurotic one, losing the plot over pathetic little things, therefore to be ignored! Oh, bring on that revolution, hope there a big enough wall!

Lots of love

Heady

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Pants heady, very polite of you! Lol

Yeah I do think we (to the so called professionals) do appear to be losing the plot?! Well perhaps we are, who the **** wouldn't in our situation?

That wall mmm I don't think it's gonna be big enough....x

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I love bingo.

I hear ya. I'm sick yo death of all the constant nagging and fighting everyone. I'm now losing patience with Mum too as I'm just so angry inside at the whole world. Just want my life back but feel awful for saying that.

Sod off world !

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My sentiments exactly!!!

Lots of love

Heady

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Don't feel awful spiral sparkle I feel exactly the same! X

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Hey Satt, couldn't agree with you more. It's so wrong when you all want life to be calm, smooth and free from problems. You've all more than enough to cope with, stress is so draining, exhausting and unnecessary when people don't don't do t their job properly. The aggro you're all getting is very common, not only with psp but you're lucky if you actually get 'stress free care' these days. Someone should start a petition with their 'worst day scenario' so the 'powers that be' see what sort of life carers go through. Love jxx

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A petition Jingles what a brilliant idea! X

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Hi Satt2015,

Just finished an extremely difficult time with (some were good but unfortunately only about half) doctors, nurses, care providers etc. Realised that it wasn't my Dad's illness which was making me stressed but having to deal with ignorance, poor care, bureaucratic red tape, people who don't listen and others who won't make a decision unless someone else backs them up. Your rant helped me. I'm not alone!

Cheers - and hope your days get better. Yea- for Friends and BIngo!

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Well said.

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Agree totally! It is everyone else (i.e. Professionals) that stress me!! X

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sorry you are going through this - I am in Pakistan and I used to think it was just the semi-educated and empathy-lacking nurses and doctors who acted like this but it seems like this happens most everywhere

I know I used to fight with pretty much everyone because I was frustrated no one would treat my dad with the respect and care he deserved - I remembered him like he used to be...

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Yes Sammy it appears to be all over the world! I'm pleased you remember your dad as he used to be. ❤️

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