PSP problems.

[Kaylewis]

Hi everybody my name is Kay, I gave up work 2 years ago to look after my mum who is now 81 and has PSP, a real fighter and has lived 3 yrs longer than she was given. She needs total care, is hoist transferred, but can stand using a rotunda for the toilet, but it’s a bit dicey at times. She is on a purée diet and stage 3 thickened fluids, has just finished trimethoprim, nitrofluentin, Augermentin, clitheromycin, one after the other for chest and uti infections., and of course with this came the diarrhoea. She has no form of communication, she lost the power of speech a few years ago , gets muddled with yes and no cards so it’s a constant guessing game. She still recognises us but some days is in her own world. I have applied for CHC twice and twice been turned down so I have one more chance and I will try again, each time it took about five months to get an answer. It’s so frustrating as the PSP condition can change fromhour to hour, without regular accessments I don’t see how they can sayno on the one accessment they do.

[Kevin_1]

Hi Kay

Welcome to the forum.

We're a friendly supportive bunch and there is a lot of support, experience and knowledge here.

Having said that you sound like your an experienced carer.

Did you do any preparation for the CHC assessments?

How much do you know about the DST and scoring?

Please come back with this. When we know your baseline we will know where to start in helping you with it.

Meanwhile you might take a look at this thread.

healthunlocked.com/psp/post....

Getting CHC is often a struggle. Being informed and actively getting involved in the process makes a huge difference.

Do come back.

Best to you both

Kevin

[pink_flamingo20]

Sorry I know it's not an answer to your question, but do you have carers in for the hoist or do you and somebody else do this?

[raincitygirl]

Welcome here Kay;

Seriously; Kevin's advice is the best you can get on this site respecting so many things and particularly CHC.

Will look forward to hearing more from you - Sounds like you're at a very gruelling stage of this disease with your mum.

Good Luck and keep in touch!

Anne G.