Hi all
We have our first CHC checklist assessment in 2 weeks for Mum. The neuro nurse is carrying it out. I have tried reading up a bit on it but can anyone give us advice about how to handle the assessment? We are so ready for extra help now so really want to get through this in the best way possible. My Mum has CBD diagnosis and I think she is going into the advanced stages I'm sorry to say. Many thanks, Martina
As I am sure everyone will say, just focus on the worst days, and cry as well, which will not be hard thing to do. Good luck Yvonne xxxxxx
As has been said
Don't minimise difficulties. Focus on the worst. If you are struggling, don't feel inadequate, lay it on the line.
This is the 'tool' they are using. Read it before they assess so you can focus on those areas.
gov.uk/government/publicati...
Click on the checklist.
Wishing you well. Don't hesitate to ask for more info.
Best
Kevin
Lord knows why my smiley has its tongue stuck out!
Kevin hope you are both ok, not heard from you for a while x
Hi
Yes, I've been struggling, again!
Liz has had another, rather large, step down... Mentally there is more missing and she is running on automatic more... Habitual requests and little in the way of initiating. That is she will go thirsty if I were not to ask her if she wants a drink.
Loosing her piecemeal. We all know what it is like.
Her high octane emotionalising makes it like living in a bad soap drama. My adrenaline is always running. No peace, no equanimity an little joy. It's like living with a tormentor, but she loves me so much... She can't understand... She feels so vulnerable and frightened. Meanwhile I am emotionally ragged.
Every day I fight to keep going. I just feel so stupid and weak!
I know I am not... Ughh.
I will see this through and I will see her right!
Warmly
Kevin
xx
Hi Kevin, I hope you are not still,struggling on your own. If have got a care package in place, then scream very loudly, that's it's not enough now!
Sending big hug and much love
Lots of love
Heady
Kevin you are doing an amazing job... it's the constant changes to my mum I find hard to take .. just when I think we can manage and she is coping! The sadness is all consuming! But we keep going because we love them so much..
Yes, it is the sadness which turns the work into a burden.
And waking to see what new losses have to be accommodated.
I am going to write a song... "I will persevere... subject to terms and conditions"
LOL
Be well
Kevin
Edit: I think I just had a mad moment writing this post... Oh, well!
Oh, Kevin, again you put me to shame. I get so impatient with my sweetheart, and he is so relatively easy to care for. Stubborn and unable to communicate his intentions, yes, but generally patient with me and always willing to be affectionate. I don't have the constant adrenaline poisoning I used to have when he was more mobile and falling all the time, but my triggers are very sensitive still. I feel for you! Love, ec
Oh, ec
I am no saint... I think there is no patience great enough to deal with PSP.
Love
Kevin
xx
Hi Kevin
I hope things have settled down a little for you
Thanks for asking Tillyhugs
They've been much better since the agency started. Liz get's much better care now.
But hey, we get days where she can be trying. It goes with the illness I guess.
Today she has all her old female friends from London. They all bring nice home cooked food and Liz puts the wine on.
I make myself scarce and they have a great time together.
Today is a good day 
Sorry you are having a tough time. This really is a terrible disease. Already said but I'll reiterate; do not down play any symptom. Focus on the worst and most dificult symptoms and let them know your struggles. Hopefully you will receive some much needed help. Good luck!
Kevin hang in there, I can feel your stress and pain, PSP destroyers everything, it is a hateful illness xxxxx
Just to follow on with other advice - always use the worst day as your guide when filling out the assessment and be persistent ! It took us 15 months before we got CHC (after being refused then appealing ).
Good luck xx
Before reading the other responses I would say tell them everything as in worst case scenario
List all medications
List everything your mum can do herself, i.e. Can she wash and dress herself? Can she clean her teeth? Can she cook and feed herself? Is she incontient? Does she need help with toileting?
How is her walking?
How does she get in and out of bed?
How much help do you need?
We have chc and have 2 carers 4 times a day for an hour each visit plus 2 afternoons of 4 hour respite
Good luck it's a hell of a process
Also read up on care to be different and pspa for more info x
CHC process
CHC funding
Deterioration- will we now qualify for CHC assessment ? 
