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PSP Association
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Respite

Morningre

Well off on monday for a weeks r and r. Where did that twelve weeks go! Not going too far as things are worsening, managed to get a little cottage in one of the cotswold villages nearby, when i booked the guy said but you are only down the road, i briefly told him the situation, he then said have the two bedroomed cottage and only charged me £150, so my girlfriends are popping in and out maybe staying over!

Very tired now, rog now with disturbed nights, if any of you get this chance to have respite i urge you however hard do take it, there will be tears i know but i have to survive this worsening nightmare.

See you on the other side

Ju,ie

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Lucky you! Enjoy! Wish I could join you! My dad lived in Ciren not far from the Priory Gardens so I spent several hold with him, getting around the villages and walking the Cotswold Way. Hope the sun shines and you have a good fire!

And that all is well on your return!

Hugs

Jen xxx

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Hope you get plenty of sleep, Julie.

When Chris was at that stage I chilled overnight at a spa. Great but hard to forget Chris trapped in his bed.

Its hard, Julie, I know . You are having a long haul.

Big hug from Jean xx

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Well done Julie, this respite is absolutely necessary!! Enjoy x

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Have a lovely time Julie. You are so right about respite. It is bloody hard to leave your loved one, but so necessary to be able to catch up on some sleep, have a meal, without being interrupted, enjoy the odd glass of something cold with friends, without any worry. Hope you can gain that tiny extra bit of strength to get you through to your next break.

Sending big hug and much love

Lots of love

Anne

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Have a good break!

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Oh yes agree, strongly recommended, as no one understands wholly only the carer that's there dealing with it 24/7.enjoy

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I hope you’re able to get some solid p&q! The guilt is normal, but each of our loved ones would want us to take care of ourselves also! Onward and upward.

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Julie hope you had a good break, and recharge your batteries, hate this bloody psp xxxxx. So nice for the owner of the cottage giving you a discount xxxx

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Hope you have a great break Julie. We all have to recharge the batteries to overcome exhaustion and frustration. I was always told by the care home staff not to visit as that would defeat the purpose. Really hard but so true. Stay strong Julie. Hugs coming your way.

George

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Enjoy your down time Julie, hard to switch off totally. I'm not sure how I feel about respite think I may enjoy weekly sits so that I can get to see friends whilst feeling Ben is in safe hands. Had a week off the other week and arranged for friends to pop in to see Ben whilst I went to viit my family. The home felt they were being watched and are reluctant to take him again. Can't win which ever way you turn! Certainly wasn't what I intended, have list confidence in letting him go into another home.

Love kate xxxx

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That surprises me, Kate. I have not found that and would be wary of leaving him with that attitude. I found the hospice and nursing home I used very welcoming.

love, Jean xx

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That's really sad, Kate. Was Ben happy there? Did they look after him OK? If so, perhaps a little letter to the Manager, explaining that you had arranged all these visits, to re-assure Ben, not to check up on him. It would be a shame to lose this much needed respite, over a misunderstanding.

Sending big hug and much love

Lots of love

Anne

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Hi Anne, have sent two emails to the manager she came back to wish us look and was sorry we didn't meet their expectations. I replied explaining my intentions but to no avail. I think it was because Steph, who does some cleaning and sitting for Ben defended him not sitting in his wheelchair and going to the restaurant. She asked Ben if that is what he wanted and he said No. she knows him really well and was just acting on his behalf. Oh well you can't turn the clocks back!

K xxx

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I hope you have spoken to your CHC manager about this home! Try and find another, you can't afford, NOT to have this time off.

Lots of love

Anne

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The CHC manager was the one to tell me, am meeting her for a visit to another home but have heard bad reports about it. (I.e. From a nod and a wink from a health professional) bit of a minefield Anne. xxx

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Yeah, I was lucky, the one Steve went to, was recommended by one of the PSP support group, so they had heard and looked after someone with PSP. That's always an option, if you want to come down to Bristol again. I did that with Steve once, when I went to see my daughter.

Lots of love

Anne

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Hi again Anne, thanks for the info but don't think Ben is up to a four hour journey now. It is something I had in mind but know it's out of the equation now. Hope you are OK as I know it's a difficult time for you at the moment.

Love Kate xxx

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Love all the lights that are starting to appear, but hate this new normal that I have to exist in!

Know I am thinking of you as well.

Lots of love

Anne

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:) Absolutely

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