Just before Christmas we had the CHC checklist however we did not trigger to go forward with an assessment - how much further down the PSP journey do we have to go to get the ball rolling ?
Yesterday I think my beautiful mum reached the next stage as she can no longer transfer/weight bear - she had been getting worse transferring but yesterday when transferring her from the commode to her bed on the rotunder we only just made it without injury to either of us ( yes I was doing this on my own ) If it hadn't been for my children's dad ( he was here visiting our boys and doesn't get on with my mum or really talk to her let alone anything else ) coming to the rescue and helping me things could of been a lot worse. I had a panic attack and was hysterical , I felt useless and guilty. Once we had got her back in bed and as comfy as possible I called the district nurse team to find out what I could do as her carers were not due for another 3-4hours , when they called back they said not to try again and if she needed the loo she would just have to be cared for in her bed. Is this classed as double incontinence now ? She was already incontinent of urine so we had the pads already thankfully.
She is getting more and more muddled daily thinking what is on the TV is happening in the room and is real , thinking the duvet has pockets / openings where there aren't any or hallucinating thinking people are behind the curtains and when I tell her there is no one there she calls me a liar all quite frightening for my 10 & 4 yr old too. I have started to agree with some of her ramblings so as not to make things worse.
She has to have drinks via a straw but this takes her breath away and sometimes she has a coughing fit after drinking - I have to feed her most of her meals and as yet we haven't had any choking.
PSP is so cruel and robs its victims of all their dignity. I hate PSP and all it keeps doing to all of our loved ones and their carers.
Written by
Sophiejo
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I remember when this happened to my dad in May this year (he has Psp) suddenly no steps happening at all and mum and I had to get him in bed which took 90 minutes (a back breaking time) without bloody sliding sheets!! You must ask the DN's for these if you haven't already got them! I also flew into a panic which turned into a raging bull when I was told by the OT that dad would have to open his bowels in bed! In fact that was one of the biggest rages I've had, I went mental telling her she was out of order telling me my dad would have to open his bowels in bed (in a pad)! Two nights later my dad was taken to hospital through no bowel movement for 12 days (from memory) and that's where he was fast tracked for chc!
So, what I'm saying is, call the gp, the hospice, the OT, the DN's, the neuro team (yes ALL of them) explain the situation in no uncertain terms and request that another assessment is done because now that your mum cannot weight bear, she needs chc! And yes I'm afraid I think with Psp (not so sure about cbd) they all become doubly incontience....(heartbreaking)!! As for the mental state that needs to be discussed too! Tell them everything as in worse case scenario (although I know it's bad already)!
Don't take any nonsense your mum needs chc! Message me if you want, I may be able to help further
Thank you for these posts they are so relevant to our current situation too. On our last Specialist nurse visit I raised the question of chc checklist and when could it be carried out. The nurse said my lovely Mum wouldn't pass enough domains yet. She is due again to visit in 2 weeks time so I'm reading up on it all now. My Mum is in a similar position to yours sophiejo with regard to difficulty with weight bearing. This disease is heartbreaking. Let us know how you get on as I'm in the same boat!
I've called the hospice , gp ,dn - only the dn said they will follow up and speak to chc team as we may now trigger for assessment . At the moment we are self funding 2 carers 3 times a day ( not yet had a bill am worried what it's all going to cost )
Yesterday I admitted defeat and asked my gp for some help as I'm just not coping , crying , getting angry and panicking all at the same time I suppose we grieve a little every day as another bit of our loved ones is taken by PSP.
Thanks for the offer of messaging I might take you up on that if I don't get anywhere !
You should NOT be funding this! It definitely sounds to me like you should be qualifying for chc!! Does you mum receive the higher rate of attendance allowance? X
Yes she does but she has a good private pension and savings too so at the moment without chc she has to pay for the carers.
Fingers crossed the dn speaks to the chc team soon however there doesn't seem to be any continuity with the dn/community nurse teams I have lost track of how many new faces have been here in the last 2-3months ! I can't keep track of who is who and who does what !
Chc isn't means tested so it doesn't matter if you're a trillionaire! Don't give up darling!! Chase them every bloody day, no matter how exhausting, keep on and on and on!! X
Sophie, keep a careful record of your expenses to private carers, you should be able to claim from the date of application when you get your CHC. But they need to see proof. Peter.
The district nurses supply them, they are used to help turn the patient on their side or move them into a better position
I'm not sure they'd help with getting out of bed, anyone else know please?? X
Thank you so much satt2015. My poor Mum cannot do anything on her own. She needs help with absolutely everything from toileting to brushing her teeth to feeding to transferring bed to chair etc. I will look at that care to be different website too and request the checklist assessment. Thank you again!
Equally Martina message me if you need extra help! The buggers make what is already bloody difficult and distressing even more black out stressful and they shouldn't!! X
I've just had a very brief look at your previous posts! Can't see why either of you wouldn't be entitled to chc?! It really is disgusting how we are all treated!! This is a fight worth having as no future care would have to be paid for by your good selves! Care at home or otherwise is all covered by chc x
I've just been reading on caretobedifferent if the patient has declined rapidly you can ask for the patient to be fast tracked for chc, this really is a fantastic website!
Sorry for going on but it infuriates me hearing about all the people that have so much hassle obtaining chc! X
Omg just had the 1st carers bill for the month at £1700 this doesn't leave much of mums pension and attendance allowance to pay for everything else ! The sooner we get the CHC checklist done again and go farward with CHC assessment if it triggers the better - it's not fair that someone who has worked hard all their life to own their own home and provide for their families future now has to dip / plunge into their savings !
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