Palliative Care, (Continued).: CHC does not... - PSP Association

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Palliative Care, (Continued).

Robbo1 profile image

CHC does not seem to exist in Sheffield. Apparently, according to two consultants from different hospitals, the most we are likely to get is what has been promised. That is four short, calls to provide B. with peg feeding and medication. Meanwhile, he is still in P.C. and the consultant feels that as he needs 24 hour care, he should go into a nursing home. This did not go down well with either of us. I told him that we would try it until we could organise something at home. Sadly, the calibre of some carers leaves a lot to be desired. Our best company cannot provide the manpower. The last company I got sent 17 different carers in 24 visits. Some of these were young girls , and it was obvious there were gaps in their training. Posing a problem for 24 hour care.

My son is driving up and we are going to look at a couple of homes on Thursday.

I do hope we get some help with the cost, but I am trying not to think about that at present.

Meanwhile, B is sleeping for most of the time and I am full of a streaming cold and hoping that with medication, it will dry up before tomorrow's visit! X

13 Replies

Oh, I am so sorry you have all this AND a cold to add to your troubles. I hope you get something sorted out. There seems so little good help anywhere, but 17 aides in 24 visits? That's just nonsensical. Good luck, and feel better soon. Love, Sarah

If your husband needs a nursing home, then please know you are doing the best you can for him. It's not always what we want thus our loved ones would not have PSP and other diseases unfortunately we must work with what we have. I send you and your husband and son many caring hugs as you make this very hard yet necessary decision.

I am so sorry that you have a cold right now to layer on everything else with.....God bless you, and gesundheit!


Sorry to read your post.

My dad had the same problem with carers and there were lots of young girls that knew nothing about my dad condition and wouldn’t give him any sympathy if he didn’t stand or move like they wanted him too.

We eventually had to place my dad in a home as it was all too much for my Mum. It’s so sad seeing my dad in a home but it has made my mum so much calmer.

The problem that really annoys me is the lack of care when it comes to washing my dads hands and face after meals, cleaning his teeth etc they say they do it but it’s obvious they don’t. When I shave/trim my dads beard food is stuck in it. I have mentioned it to the staff but they don’t seem to change. My dads coordination has gone, so moving his hands to wash his face and brush his teeth is too hard work for him.

Good luck finding a great care home. It’s heartbreaking looking around.

Mel x

Very hard situation for the family. I feel sympathy with these words of Mel full of practical sense and strong emotions contained.

I admire your courage and equilibrated judgment.

Hugs. Luis

I'm really sorry for the difficult decision you had to make. I only hope we can take care of my Mon til the end, as there are no good nursing homes where we live, it would be disastrous to put her in any of them. There are few care givers trained with PSP caring, so we had to hire a young girl who has a calling for caring, treats her with love and dignity, and is someone we know we can count on to take the best care she can give to her. On your cold, I think it might have to do with being stressed out and probably tired. Caring for someone is exhausting and the body eventually puts a bill on us. Take good care of yourself so you're ready for the time coming, best of luck, and I hope you find a really good place for your husband.

Totally agree.


Thank you all for your sympathy and kind comments. They are much appreciated. (Gesundheit made me laugh, thanks for that, AVB)

I couldn’t get onto the doctors, lists, they were full, so I’m waiting for a telephone appointment. It will have to be a long stethoscope! Rx

Hi I think the standard of the so called carers is diabolical they seem to cause more mess and chaos when they come here and I dont find they do anything helpful. I really feel for people who only have these people to depend on.

I just wrote a long post and it seems to have got lost. Basically it said what a disgrace that CHC funding is not consistent across the country. The secon point was about the standard of carers. We have had a few issues lately, most of the carers are lovely but a few not up to the mark. Last week Ben was left unattended on his stand aid , not safety belt around him and both carers doing involved in a chore totally unaware that they were compromising his safety. Needless to say I was straight on the phone to the care agency and Bens CHC case manager. Also the carers never arrive together, can be twenty minutes apart giving me no option but to help with transfer, makes a bit of a nonsense if giving me time-out. The girls complain that they aren't sent to the double up calls together to ensure the arrive and leave together but the agency managers don't listen. Not rocket science to me! Now looking at another agency who sent more consistent carers as we have umpteen at present which isn't good for Ben.

Love kate xxx

Yes, you are both so right. I shudder to think about Ben being left unattended. It doesn't bear thinking about. The carers,are supposed to care for the patient and to provide a bit of respite for the usual carer. Unfortunately, I found I was having to keep showing all the different ones where things were and how to do things. Very frustrating! Rx

Hi robbo

These people are my favourite muppets they know naff all

I have a 19+ hrs a day chc care and that's because I won't let him go in a home and he's peg fed and all med through it too

As to carers get where the same come all the time I have about 6 different ones and none of them get away with anything now they all know now what is expected day in day out

I know it's hard but fight for what you need for your needs at home

I cannot look after Archie at all cause I have my own illnesses which prevent me from helping him so the point I'm making is if you want care at home tell them to find somebody

I'm sorry that you are going through all this crap and hope that you can sort it

Take care and thinking of you

Sue x

Robbo1 profile image
Robbo1 in reply to Suebatt

Thanks Sue. The trouble is that B does not have CHC, so I will have to find the carers. Good carers it seems are like gold dust, hard to find. Rx

Suebatt profile image
Suebatt in reply to Robbo1

If he's on palliative care tell the he needs fast tracking

These people so make me blood boil

Sue x

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