Just dropping in with good news. - PSP Association

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Just dropping in with good news.

Kevin_1 profile image
43 Replies

Our CHC personal budget was finally approved today.

We might not have got all we asked for. but apparently most of it.

They have even allowed us to up the care because the plan was a little old.

Finally things look like easing up a little.

It only took eight months!

Thanks for all of your support.

Waiving

Kevin

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Kevin_1 profile image
Kevin_1
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43 Replies
Heady profile image
Heady

Thank goodness for that Kevin. Let's hope they can now actually provide you with this extra care. Make sure some is used for sitting with Liz, so you can get out regularly. I get two, four hour slots a week, they do my ironing for me and other little jobs, changes the bed, unloading the dishwasher, will put the Hoover around. Every little bit helps.

Lots of love

Heady

Kevin_1 profile image
Kevin_1 in reply to Heady

Grinning

I remember you said you had four two hour slots... So I put in for the same.

I never thought of them doing things like ironing and changing the beds.

Thanks Heady - My day just got better still!

I have copied so much from the folk here.

Love

Kevin

Heady profile image
Heady in reply to Kevin_1

NO! The other way around, 2 X four hour slot. Still, 4 X two hour slots, may suit you better.

As for copying, that's all I have ever done!

Now clear off, go out to the pub or something, then post tomorrow and remind us what the world is like out there.

Lots of love

Heady

Kevin_1 profile image
Kevin_1 in reply to Heady

Typo - 2X 4 hour slot sorry.

I have just peeked through the front door... I saw a car moving and it had people in it - So the world is possibly still out there... off for a pint and a pub supper :)

Heady profile image
Heady in reply to Kevin_1

Thank goodness for that!!!

Lots of love

Heady

abirke profile image
abirke in reply to Heady

AND NO IRONING!!!!!! FOR ANYBODY!!!

jillannf6 profile image
jillannf6 in reply to Heady

i agree h

l;ol jill

xxxxx

Amilazy profile image
Amilazy

Great news Kevin, hope it allows you to provide more quality time with Liz.

Satt2015 profile image
Satt2015

Well done Kevin!! Some good news for once!! X

jillannf6 profile image
jillannf6 in reply to Satt2015

io a gree e H];loljill

xxxxx

abirke profile image
abirke

I hope it gives everyone good solutions and a little respite!

Yvonneandgeorge profile image
Yvonneandgeorge

Well done Kevin have one for me, I could do with a drink, don't really drink, sometimes I wished I did xxxx

Marie_14 profile image
Marie_14 in reply to Yvonneandgeorge

Yvonne

Same here! Have been eating chocolate like it's going out of fashion! Probably won't be able to afford it from what I hear on the news! Inflation going up between 5%-10%. Did anyone else hear that or did I imagine it? Better buy the wine in bulk now as we really will be all drinking before long?

Marie

Kevin_1 profile image
Kevin_1 in reply to Yvonneandgeorge

Chocolate works too :)

Hugs

Kevin

xx

pzagy profile image
pzagy

persistance always pays off....seems taxes are always due on time but when we need a little help from our government it takes time grrrrrr

good luck

Spiralsparkle profile image
Spiralsparkle

That's great news. Have a good pint

easterncedar profile image
easterncedar

Yay! Thanks for sharing!

PSPwife profile image
PSPwife

Hurray! So happy for you. Perseverance wins!

Debbieann profile image
Debbieann

As the others have said, have that pint, or two, even a little break will hope cope with the challenges

Love Debbie xxxx

Heady profile image
Heady in reply to Debbieann

When's yours Debbie????

Lots of love

Heady

Debbieann profile image
Debbieann

Working on it! I have an appointment with crossroads 5th December, still waiting to hear from SS regarding a careers assessment, F is adamant he doesn't want anyone else looking after him, so will have to get over that hurdle, he doesn't even want his own daughter to help! As I've said I can just about go out for a little while and leave him sitting in his chair, make sure he has everything he may need next to him, don't think that'll last much longer though, and the hospice is finishing, so I am looking for something to replace that, without much success, and I'll be a VERY nasty person if I don't have the little breaks. Slowly getting up the creek without a paddle. Then we both will sink!

Everything is such a battle, as you have said many times,

Lots of love

Debbie xxx

Heady profile image
Heady in reply to Debbieann

Hi Debbie, just get someone to sit with F at first. So he gets use to having a Carer around. They should all wear a uniform, so they look a bit nursey, let's face it, if he was in hospital, he would let somebody whatever needed doing. Most carers are very professional, matter of fact and respect people's dignity. F wouldn't be the first person to object to their TLC, they know how to handle these situations. It's us that has the struggle.

Lots of love

Heady

Kevin_1 profile image
Kevin_1 in reply to Debbieann

Hi Debbie

Your'e a fighter and no mistake.

Good luck.

Liz and I are in your corner shouting support.

Liz and Kevin

XXX

NannaB profile image
NannaB

👍🏻 🍷 XxxX

doglington profile image
doglington

How good to hear good news. Celebrate Kevin. You've worked so hard for this.

Raising my glass ! love, Jean x

Katiebow profile image
Katiebow

So pleased for you both Kevin, what a battle you have had to fight and it is exhausting to be a carer and have the added stress of fighting for what you are rightly entitled to. I get so angry that some people have to jump through hoops of fire whist others seem to get help and support to help through the process, that old chestnut 'the postcode lottery' again. Make the best of the extra support you will now receive and get some precious ' Me Time '

Love Kate xxx

Tippyleaf profile image
Tippyleaf

What a relief after that battle!!! I have found your posts on CHC really helpful. Whole new wold for the majority of us so thank yiu for sharing. Your success is a huge encouragement. Enjoy the little slices of me time whenever you can.

xx

Marie_14 profile image
Marie_14

Kevin

I am delighted for you. Eight months?! Here I am fretting because we have been waiting for 8 weeks or is it 9? Must check!

It's a total disgrace but at least you got most of what you wanted. You should have got it all. Everyone should! Makes me truly mad!

Let us all know what happens next? At least we will be prepared for it?

Marie

Kevin_1 profile image
Kevin_1 in reply to Marie_14

Good luck

What happens next?

I'm trying to get them to actually part with the money!

:)

Marie_14 profile image
Marie_14 in reply to Kevin_1

Kevin

Who are you talking about? I used to have sitters for my husband. The council managed to mess one of the days up so I rang a Care Company and booked a sitter myself! Then rang the Social Worker and told her what I had done! I thought she was going to have a heart attack! Anyway I told her it wasn't my fault she had messed up so now she could sort it out!

Maybe I will get a bill for a few thousand one day but if they try that I really will go to the press!

Marie

Kevin_1 profile image
Kevin_1 in reply to Marie_14

Sorry Marie, I've only just seen this.

We are moving on to a Personal Budget where they give us the money and we spend it any way we like withing the agreed care plan. Apparently it has been approved, but we need them to do the next stage where they set up the payments into the account we set up for them.

Should you want you can do this with your social care too. The advantage is that money saved in one area can be used in another area as needed.

Hope this clarifies.

Best

Kevin

Marie_14 profile image
Marie_14 in reply to Kevin_1

Kevin

I decided against doing that about 12 months ago. I just felt I had enough to cope with without doing what they should be doing anyway. Until now things have worked out reasonably well. Lots of fights along the way but I managed. Now I feel like I am having a meltdown every day!

Marie x

Kevin_1 profile image
Kevin_1 in reply to Marie_14

Hi Marie

We only did it because there were things like therapeutic massage and hydrotherapy which were liable to change also to enable us to arrange our own respite as doing respite through the NHS meant we were competing for limited commissioned beds which were, we think, being prioritised for hospital discharges.

Yes, there are always lot's of fights in this caring game.

Gosh it is so easy to have melt downs isn't it... today has been a bad one for me. Hope you recover quickly.

Best wishes

Kevin

x

Marie_14 profile image
Marie_14 in reply to Kevin_1

Kevin

The weird thing is he was referred for Neurotheraphy and hydrotherapy but it never happened! I got a phone call to tell me he had been referred then the Parkinson's nurse said they wouldn't see him but the Speech and Language woman told me they had told her they would! This is what we have been up against from day 1.

We did pretty well with respite until he caught pneumonia and just went downhill even further.

Hope you are alright now? I have cried myself out I think!

Marie x

Kevin_1 profile image
Kevin_1 in reply to Marie_14

Hi

I know that 'cried myself out' one. Horrible.

We aranged for private hydrotherapy and asked for it to be added to the care plan (Personal Budget not in place.

What is neurotherapy please?

Best

Kevin

XX

Marie_14 profile image
Marie_14 in reply to Kevin_1

Kevin

From my understanding...as they messed it up and we never got it. It is seeing what the person can do and what theycan't and focussing on helping them with walking or speech for example. It sounded so good but then they said they wouldn't see him according to the Parkinson's nurse but according to the Speech and Language Therapist they would! That was during the same week. I just gave up to be honest as my hubby had stopped walking by then. He still had speech and i thought the woman who came to him would help him with that but she told us she didn't believe in exercises!

I tried some with him but now he's in the Care Home he doesn't have anyone even talk to him! If you can get it and you feel it might help go for it! Don't give up as easily as I did. His voice is now almost gone! Mind you since he went into the Care Home everything has gone downhill. I wish he had never gone in there now.

Just spoke to Social Services and the person I spoke to was shocked that he is just left alone in his room all day. Think she might get someone onto that. We are getting a new Social Worker but she was unable to say when! I know who it is though which is a step forward. They have two vacancies it appears and are struggling! It's the same with every organisation we deal with. Wish they would give us both an injection and let it all be over if they can't help us.

Still feeling teary. Goodness knows where they are coming from! Thought they had all gone too.😢

Marie x

doglington profile image
doglington in reply to Marie_14

Oh, Marie, it is so sad. They may not be able to make him allright but he needs company.

Its awful to feel so helpless.

love, Jean xxx

Marie_14 profile image
Marie_14 in reply to doglington

Jean

Yes it is. My daughter was meant to take me there tomorrow but her son is very ill. Sounds like he has a bad case of the flu! So she has to take him to the doctor...so he can pass it on!!

Anyway have managed to get a lift there but have to wait until 7pm for my son to collect me! He has to go to parents evening at his daughter's school. Never rains eh? The visiting ends at 7pm so hope he gets there a bit earlier.

Marie x

doglington profile image
doglington in reply to Marie_14

Awful to be so dependant on others !

love, Jean xxxx

Marie_14 profile image
Marie_14 in reply to doglington

Jean

It certainly is. To make matters worse my Grandson felt better this morning so he wanted to go to school. Daughter rang at 9am but I didn't know it was her. Got up at 10am and she had left a message! Rang her back but she was going to see her Dad in a few minutes whilst I was sitting in my night things! So had to say to go and I would go later.

Son collected me with his daughter. Seems she got an excellent report from all her teachers. They all want her to do their subjects for GCSE. She has to do her options this year!

Anyway then he took me shopping. I think I forgot half of what I need.

Got home and asked if he could take the Xmas tree and decorations down when I get my step ladder back. He got so angry and said he had no time! So I just said I wouldn't bother with decorations then. Then he got annoyed with me for that. Told me to tell my daughter to deliver our ladder and step ladder back because he couldn't do anything without them!

He's right of course but this goes on all the time! He gets angry with my daughter...I do too but daren't say a word to her as she doesn't contact me then! Until she wants something that is. I end up getting earache from my son because of her and I treally don't need all of this. So will text her tomorrow for step ladder but probably won't get it until she feels like it! Christmas will be over!

Wish I could drive, could see my husband when I wanted to and would just go and buy a new tree and decorations!

Marie x

doglington profile image
doglington in reply to Marie_14

I can't imagine how I would cope if I didn't drive.

Jean xx

cabbagecottage profile image
cabbagecottage

So pleased for you Kevin . I bet two three hour sit . Used to be two hours but by the time I got anywhere through the traffic I was checking the time to get back again .

Abrecheisen53 profile image
Abrecheisen53

I worked for the government for years - sooooo many acronyms! You got me on this one - what is the CHC personal budget? Congrats anyway! Waiving back! Alice

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