Dear All,
Sometimes there is a little bit of good news. We heard last week my husband has been awarded CHC and yesterday was the first day of carers coming in to get him up and dressed in the mornings. He seems quite happy with the new regime, albeit early days. I just have to get use to the idea of having help and standing back and letting others get on with the job in hand.
Good luck to anyone else who is going through the assessment process for CHC at the moment.
Peter3.
Hurrah!! Good news indeed 
So pleased you have managed to get funding for Peter's care. Dad sits in the kitchen with his crossword when the carers come to make sure he's not tempted to intervene!! 
K x
Hi Kathy,
Good idea, I must try some kind of distraction when the carers are around. This morning I did get the ironing completed!
Peter3.
Well done. Good news. I hope it makes the nightmare a little easier to deal with.
Hi that's great news,how do you go about getting chc assesment please I have heard of it but not to sure how you get it,my hubby is 59 has frontal temporal dementia and psp he has swallowing proolems after having a asperated pneumonia a month ago he is on a soft diet now,he can only walking if I hold both hands to hold him up,he seems to be progressing very quickly especially over the last 2 months,sorry to go on but find this confusing and reading other people on this forum has been a lufelune,thanks Sandra x
Hi Shep, Our local Hospice referred my husband but I'm sure the GP would know and other's here will tell you. Someone came to assess my husband to see if he was eligible to apply, then we had a pre-assessment before the 57 page full assessment (they don't make it easy). You can download the assessment form on line (I googled Continuing Health Care assessment forms) and this will give you an idea of what the criteria is. In the behaviour section my husband was put as low need as he is not aggressive. I put a statement with the form to say he is not aggressive but stubborn and by insisting on trying to do things he could no longer do, he put himself and others at risk. I gave examples. Because of this, he was put up the scale.
I hope you manage to apply. Best wishes.
Nanna B
Hi. Just read your comment about CHC. Because it is so expensive, the NHS does not openly advertise CHC. My sister was very fortunate insofar as she paid for her husband to go to a private hospital to have a PEG fitted (to enable him to be fed through a tube into his stomach). On discharge, the hospital had managed to persuade the local authority to fund it. I suspect it is generally confined to people thought to be at the latter stage of a disease, so more like terminal care but at home rather than in a hospice. However, all this happened nearly 2 years ago, but my brother-in-law is still with us, in spirit at least. I would enquire through your GP in the first instance, and see if he/she is able to help. Victor has also suffered from aspirate pneumonia, in spite of the PEG (his coughing fits often result in food coming up, and I guess particles of this can get into the lungs, leading to infection). Victor's disease has progressed relatively slowly, but the key things is to be able to adapt as the symptoms change. The local GP and even his neurologist seem to be pretty unfamiliar with the disease, so have not been a great deal of help. The PSP Association, Hammersmith Hospital (after his various admissions) and this site have been a lot more help!
Hi Peter 3, It's great isn't it. We have just been awarded continuing health care as well. It's nights I can't cope with as I'm up 5 or 6 times so I've been given night sits Monday to Friday. I could have had 7 nights but want the weekends as we often have relatives staying. Last night was our first night and a very nice Portuguese man arrived. A bit strange knowing someone else is in the house overnight but oh what bliss to have a good night's sleep. Best wishes to you both.
Nanna B
Hi NannaB, Pleased to hear you too have now got some help. It is strange having people coming into one's home everyday, but I am starting to appreciate not having to do everything myself. It also means others are getting to know my husband's needs and ways.
I hope you are feeling the benefit of some good nights sleep.
Peter3.
That's so good to hear Peter . I broached the subject subject with the social worker who we have at the moment ????? . She told me my husband wasn't high enough on the scale . Well it is CONTINUOUS FOR MY HUSBAND AND MYSELF .
he cannot stand walk , now has two carers to get him up and pit him to bed . I MMMMMMANAGE!!!! myself during the day . He has a hoist but it is too heavy for me to use , His heart is also dodgy .
I cannot get him to the toilet now so I transfer him on and off the commode !! . He tries to feed himself with great difficulty his coordination isn't good non of his skills are .
Once in bed because of all the drooling during the day the mucus collects in his throat so we have disturbed nights .
He uses a convene and bag night and day ..
His ability to move at all changes from hour to hour right under my nose which makes it much more difficult for me if he asks to use the commode , As I am sure you will all understand . This includes the ability to speak swallow chew .
I don't know how all this compare with others who apply ..
So far except for going into hospital for a knee op , I had the devils own job to get them to release him for me to bring him home . He hasn't been in hospital . I cannot even manage to get him to any appoiNtments with the Parkinson's clinic . On top of that the chap we have always seen has retired along with our GP so we have been left to our own devices .
If I have any problems I normally ring the district nurses these days and they are most helpful .. They were the ones who got us a hospital bed and wheelchair .
This is so sad! Many times I have felt envious of those of you in the U.K. for the services you have. But it seems like it is so difficult to avail yourselves of some of them. At least here in the U.S. if a doctor says you probably have less than six months to live - and you are on Medicare, meaning you are over 65 - then hospice care is pretty much automatic. It isn't 100% care at all, but the support is invaluable.
Caroline
Hi Cabbagecottage,
Sorry its taken me so long to get back to you. Reading your reply it sounds as though your husband is at about the same stage as my husband with this dreadful condition.
It was the hospice community nurse who really got the process started for us. At the preliminary assessment my husband scored enough for an immediate referral for a full assessment. Some of the main factors for the immediate referral were the falls my husband has, the unpredictability of his behaviour, choking frequently and incontinence. You are obviously dealing with all of these problems as well. Ask the community nurses for a referral if you haven't already done so.
Good luck.
Peter3.
Thank you Peter3 .
I think I am probably shooting myself in the foot because I am so hands on with my husband . He doesn't have to make a move without me . He isn't able to .
The only time I ask for the community nurse other than when she takes blood is if his bottom is sore , and then I manage that myself .
He doesn't fall because he doesn't stand unaided or is hoisted
I never say I can't manage other than the lifting , I mean by that transferring from one chair to another via wheelchair .
T?he main reading I can manage is because he is quite a short man and not quite as heavy as he use to be .
Regarding the disturbed nights, we found the same. However, we now put Victor in the "recovery position"(which my wife learned about on a Red Cross First Aid course) during the evening. This seems to be helping to encourage the saliva and mucus to drain out of his mouth rather than go down his windpipe and make him cough. We also employ a pump to help suck out the fluid. Some evenings/nights this seems to be necessary almost continuously but has certainly improved since we changed his sleeping position.
You really have to get them back again and make it quite clear that he has no quality of life, the care is continuous and lay it on as gloomy and miserable as you can. You must keep photographic and written evidence of any falls bruises, sores etc and also keep a diary of everything you are doing. This is because they need evidence of deterioration and you can guarantee he will deteriorate before they come back so even the successive visit will provide evidence.
I am my own worse enemy , I so dislike looking on the black side it only makes me more worried than I am and helps me cope .
That's a good idea about the photographic evidence . Especially at the moment because his bottom is sore , had been managing to keep on top of it but it's another example of continuous isn't it .
Neither of us has any quality of life although we try and make the best of things
Would chc be available if you are in a nursing home?
nannygoon -yes mum got it in the nursing home albeit a bit late as the interviewer rang me and said it had been accepted by the board , then she went sick and it was found in her drawer unprocessed 4 weeks later .Yet another bureaucratic let down, one of many
Cabbagecottage-You are right nobody has a quality of life with this, carers included.I was the same . It was only afterwards I realised what had been said to me -the PSP adviser had said say as it is on the worst day but I was so worried about mum hearing it and getting depressed I was not doing that. It was only when I went into another room with the interviewers that I was able to paint the full miserable picture. Mum died 8 weeks later.
Not ways my mum was in one for three years and it was the very last week when she had her final stroke and was like a pitiful animal . They gold me she was then entitled to it . TOOO Late . !!!!!!!!
Sorry should read Always .
Hello daughter No 1 , As a matter of fact I also was daughter No 1 . It was during the three years we were supporting my mother with her stroke that my husband was gradually getting worse with his Parkinson's . UNKNOWINGLY .
Unfortunately I think some of us do pull the wrong straw .. We certainly did but I Always look back at the good times it makes you feel so much better
We had a pretty rough time when my mother had her stroke (so did she ) I sometimes use to say to my husband that we should maybe step back because it might be too late for us one day and it was . Neither of us regret one day we spent with her we can rest knowing we did our best after all you did with someone you love .
How did you get continuing health care my mom cant walk as got a heart condition a fractured hip and relies up on people doing things for her but i have been told we will not qualify is it a post code lottery!!
Mum PSP , continuing health care.
CHC 
