PSP Association
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Respite and catheter info

Home yestersay after a week away in Norfolk , thirteen of us grandkids, aunties and big uns! Did a lot of walking ,drinking ,laughing,sleeping and crying but feel ready for yhd next twelve weeks when i get another week.

Monday rog to have IV antibiotics at home prior to catheter change, urinary sepsis last rwo times so fingers crossed everything ok yhis time.

Bit of info, our urinary nurse has prescribed a med called Fosca fill, it is put in the balloon of the catheter and a low doseage antibiotic is released into the bladder, preventing infections, so far so good, GP had never heard of it or DN's!

Julie

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Glad to hear you enjoyed your break. Sounds fun - and the thought of the next one will keep you going.

Report back on the new med. At present Chris uses a convene.

love, Jean x

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I like the bladder infusion if you will.....this way it fights the infection at the battlefield , not around it.....Good luck Rog....

I am glad you had such a good time in Norfolk....Virginia?.....sounds absolutely fun.....

((HUGS))

Andrea

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Fingers crossed Julie, hope all goes well and that the anti biotics do their best. Holiday sounds fun and good to recharge. How many respite weeks have you had? I've only just started on the respite journey and am so worried about handing Ben over to a nursing home environment. I feel so strongly that he needs to feel loved and fear the time in respite can't provide him with that. I know I need to get respite but find it so difficult. There is no easy answer in the world of PSP, chin up and jeep on keeping on!

Love Kate xxx

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Hi

We have live in care now CHC fund four times a year, bizarrely a week is cheaper than a few days ! The care company put the same guy in each time, nursing home just did not work, you'll be so much better, you will cry but physically looking after someone constantly like we do takes a tremendous toll.

Julie

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Hi Julie, do you have a personal budget to organise care in your home, I understood from Bens CHC case manager that you either have them organise everything or they hand money over to organise your own care. Am I right? She is a bit of a dope and not very good at communicating clearly, or maybe holding back on what I'm entitled to. The only difference I've seen since having the funding is two carers twice a day instead of one and taxi to the hospice and I collect.Oh and respite arranged at a local nursing home, which is very nice but not home! Guess I'll get to know more about how it all works at some point. Xxx

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Hi

You have the choice of personal budget or care package, i declined personal budget, i could not be arsed to organise anything else.

I think she is giving you a run around, i was quite specific from the beginning , i wanted blocks of care, i am happy to do personal care, in fact the illness is not condusive to regimented times of bathing putting to bed etc.

I have three hours daily, six on a thursday to spend time with our grandson and weekends free, the CHCaward is just that, the need is agreed but not who will give care.

There has been a slight change , CHC now want to see evidence from the care companies that they are giving agreed care package, i think this is a good idea as it is public money and these companies need an eye keeping on them, none of this cancelling etc.

Have a think what will work for you then get on the phone!

Julie

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Having trouble getting blocks of care as for Bens safety they insist on two carers, just in case he needs the loo. The care company we have can't provide that care, esp in the morning which is the time I want so that I can go to yoga class with my friends. Very frustrating. Thanks for the info Julie, I will gave to rethink what I would like.

K xxx

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Hi

Just a thought , CHC are responsible for financing equipment, it took ten weeks with all the administrative messing around but I now have a single carer ceiling hoist, care company have risk assessed and happy, amazing bit of kit and does what it says on the tin!

OT is your first step in this, give it a thought,

Julie

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We recently had a hoist fitted so will contact the CHC case manager, she saw it and didn't make that comment. Think we've got a bit of a stickler, thanks for the info and I'll peruse that one. xxx

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How do you get a week's respite. I'm desperate for a break but hospice is sniffy about having john . The alternative is to pay nearly £1k for nursing home. I can't afford to do that more than once a year. Xx

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Hi

Before Rog got CHC funding adult services paid a proportion we had to pay the rest, now CHC funds, the care company put in live in care for the week, it works well. We know the guy who stays now and it's the best we can make it.

CHC still know that I am a cheap option, they pay for eighteen hours a week, our hospice does not provide respite but give hospice at home for 3-4 hrs some weeks which I tag onto my other hours, they also have volunteers who will sit , worth asking.

Julie

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I've been told john is not bad enough for CHC and because we own our flat we have too much money for social services. So I'm stuck! I'm really glad you are having these breaks they're so important. X x

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Its not right, is it ?

I have paid for a nursing home twice. It was in Yorkshire and cheaper than London. He has had two stays in Hospice and another booked. Why doesn't your hospice accept him ?

x

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They only have one community bed. I don't see why we couldn't use it once in a while. My parents are in a very nice nursing home and I would trust them to look after him but it's £980 a week and it's full of very old people and John's only 69. I would feel terrible leaving him there. Xx

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When I left Chris in a nursing home I took him out every day. It was near my family and so he met up with them and old friends. I had a break. I would have found it hard to leave him alone. Do you have people who can visit him ?

When I left him in the hospice I arranged for him to have a visitor every day.

I know how you feel. I have arranged for him to have a week in the hospice in a couple of weeks. Now he is more helpless I don't know if I can do it.

xx

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Our children are all working and would struggle to visit. Sadly john is so apathetic that he does not respond to visitors. Unfortunately I know he depends on me totally for his emotional needs which makes it so difficult to leave him.

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