Respite Help Change Of Funding ?

[cris]

Has any one else had a change to the respite help. Susan has the lady from respite twice a week for 2 hours each.
They go out somewhere and I pay only for Susan, ie coffee, cake or whatever Susan wants to buy.
Very soon this will change and I am asked to pay for Susan plus £10 towards costs. (Early estimate) This is going to amount to about £15 per time
about £30 per week. That's about 20% of my income DLA & CA. I cannot afford it. Ok, so Susan will just stay in with the respite help and I WILL GO OUT.
I wonder if others have this set-up. I do not expect respite help to loose money or be out of pocket. I think this respite group is part funded by the council.
So much for the governments announcement a few months back about extra funding. Sorry I realise that was a dream. Silly me. I have become used to these breaks.
Both daughters on holiday for 2 weeks and respite helper also on 1 weeks hols, and as good as Susan is she has sat on my shoulder virtually ALL day
for the last few weeks. She will not leave me. I go into the garden and if it is too cold / windy Susan waits by the door for me. (Maybe up to an hour) I do
pop back regularly to check she is ok and if she needs anything. But I need the break. She stands behind me nearly all the time. I have stepped back on her
twice not knowing she was there. She stands in doorways, waits outside the bathroom. (Always seems to know which direction I intend to go and slowly walks that way). Shuffled around a lot today. Will not / can not get into any tv programme she used to like. Just stares at the floor or just looks at me. It's the clowns mask I guess lol
But I wondered if others have respite help like this ? I guess in a few months it will be cancelled altogether. If I crack then social will have to sort it until I am better. That I do not want because it would be very bad for Susan.
I managed before without them I guess I'll adjust again.
Started a new routine last night. We go to bed at 9, with a little tv in the room. Susan is asleep in 10 minutes, I can then creep down and watch whatever.
It is not going to work every time, but leaving it until 10 o/c Susan falls asleep downstairs, gets angry when I wake her to go up and is trouble.
Sorry to babble on
cris

 

[Lynne]

Cris, it's not babble ...

It's letting off some steam from this crazy twilight world we choose to inhabit with our loved ones (& which non-dementia carers can't be expected to understand). It's not always the big things which drive you crazy, little things which are insignificant to anyone else can wear you down when repeated time & time again, like a dripping tap on a rock.

Hugs & empathy ...

 

[Kate P]

Oh cris I wish I had something incredibly helpful to say to you.

If the carer takes Sue somewhere where there is no cost would you still have to pay towards expenses? I'm thinking if there's a park near by could you pack them a flask of coffee and a cake and they can snack al fresco?

As I've said to you before my mum is the same in that she follows dad everywhere - also me now during the times I look after her. I find that if I take her out for a walk it gives me that bit of a breather - even though she's still with me she's at the side of me not behind me!

Is this a possibility for you?

I wish I could help you more - wishing you all the best.

Kate P
XXX

 

[Margarita]

Very soon this will change and I am asked to pay for Susan plus £10 towards costs. (Early estimate) This is going to amount to about £15 per time

Who told you think ?

Why are they charging you £10 , Cost for what ?

so Susan will just stay in with the respite help and I WILL GO OUT.

So are you saying Just because they taking susan out they charging you £10 , but if they don't go out , you don't get charge ?

 

[Skye]

Cris, could this be for the cost of petrol?

Our carers are supposed to charge 15p a mile for petrol if they take John out. They never do, they don't charge if they just take him into town, (1 mile), and if they take him further afield I usually give them £5 for a gallon of petrol.

 

[JMW]

Hi Cris,

I cannot really answer your question but i wanted you to know that after reading your post you are an inspiration. I am having a rough time at the moment with my mum but firstly she is in a Nursing Home and not solely my responsibility and secondly not my spouse which i cannot imagine what you are going thru. I was thinking of posting saying how bad things were for me at the mo, you now the usual letting of steam and "woe is me" but read your post first and thought, hey perhaps things aren't quite so bad for me. I know everyone has their own problems here but obviously some more than others. I really admire your staminer and determination in coping with this dreadful disease.

Thinking of you and best wishes

JMW

 

[cris]

Hi. Yes I currently pay for whatever Susan has when she goes out. Drink, sandwhich, or a plant she may want. The £10 was asked about a month ago, would I be willing to pay to cover the cost of parking, petrol and I guess the helpers drink etc. It has not been clarified yet, and I understand that the group cannot operate at a loss, but I wondered what has happened to Gordon Browns extra millions that was put forward !!!! a few months ago. I know it will be anounced again in a little while and everyone thinks oh my word ANOTHER lot of money isn't he good.
JMW please make your posting. It helps you clear your thoughts, and others to see how well you are doing.
I have to go soon, Susan wants to go home, ?????????????????
This is the worst she has been. We went to the doctors this morning to get a stronger happier pill. Hope it hurries up and kicks in. Says it can take a week
Oh No I just seen me is running out of whisky double
cris

 

[Skye]

Cris, if it's the same as here, the carers get paid an hourly rate. They get travelling expences to and from each job, but any expenses incurred by taking people out comes out of their own pocket, if the person doesn't pay.

I wouldn't want my carers to be out of pocket, they're very good, and they don't earn very much.

I imagine the £10 a week is to average it out, and avoid them having to ask for money.

I usually go out and leave them at home with John, unless I have something I particularly want to do at home, then I ask them to go out, and I pay expenses.

 

[Margarita]

We went to the doctors this morning to get a stronger happier pill.

Those pill , never work for my mother making her happy no matter how strong they where , but every one different.

So wishing you the best of luck with them .

Do you think the medication for AZ is not working, as she asking to go home

Susan is on medication for AZ ?

 

[cris]

Hazel: The helper is not out of pocket (I would not want them to be) They have their petrol & parking & drink covered and other expences. But the "group" have their funding covered or not all covered by the council ? and they are losing money. Obviously no one can run at a loss. I just wondered where the funding comes from. I will ask next week when the manager comes for a visit.
Maggie: Susan has only had fluoxine but was given paroxetine this morning. I think you are right, that it will only have a limited effect. Susan has been very tearful the last few weeks. She seems to know what is happening and wishes she was dead. She has never said that before. Her imagination is going hay-wire she has to go home, she has children in doors, there is a man in the next room, there is someone upstairs, "she is not lying" etc etc. I just agree with all. But she is more persistant than usual.
Cris

 

[Skye]

Hi Cris, it's obviously adifferent system for you. Our carers are Crossroads, are yours?

Crossroads is funded by the local authority, but our branch doesn't pay for trips out.

I hope the new medication works,