A life in the day of.........................

[christine_batch]

Dear Sylvia,

When Peter was receiving Direct Payments it was to employ help for him.

I was informed if I needed some help with house work, I would have to pay.

Because Peter had a brilliant Carer, they would hoover, go shopping, hand out washing, gardening, but that was to keep Peter independent as long as possible.

Due to my disability, Peter's lovely Carer who became a very god friend to me, would take Peter out on trips so I could get some rest.

Love from
Christine

 

[lesmisralbles]

Hello Silvia

I am OUR worst enemy.
I tell every one we are OK.
You see, I stick up for Ron.
I never tell the truth about how I feel. Yes, Im OK, yes, I can cope.
I do not want him in a home.
I suspect that is how you feel about your hubby.

Direct Payments.
I have been asking since January this year.

Our new SW, who was soposed to come today DNTU. That is another post.
Another TEAPOT. GOD HELP US.

She was going to come and tell me all about direct payments.
We will now have to wait untill next Tuesday

BarbX & Ron ZZ

 

[Skye]

I don't think so either, Sylvia.

Attendance Allowance is supposed to be for you to employ help with housework, gardening etc. DP is has to be used for the cre of the person with dementia. I know you have to keep careful accounts. I don't think you could use an agency for housework.

However, if you knew of someone privately, who's to say who does what?

Sorry Crossroads didn't work out.

Love,

 

[lesmisralbles]

Dear Sue38

If you can explain the gobbledy gook on the "Goverments Direct Payments" you are a better man than I am Gunga Din.

Sent with love
Barb XX

 

[sue38]

Hi Barb

If you can explain the gobbledy gook on the "Goverments Direct Payments" you are a better man than I am Gunga Din.

Sent with love
Barb XX

I wish I could. I'm no expert on this. I can only suggest that you print off the pages and ask your new SW (as and when he/she turns up) to explain.

 

[Skye]

Just read Sue's link (thanks, Sue). It sounds as if you can get DP for the support you were assessed for in your carers' assessment. And Crossroads would have been for you, so you should be able to get money. And as it's for you, and not Dhiren, you can use it for anything you want.

Try contacting PRTC, they're brilliant on gteeing benefits and support.

 

[Grannie G]

Thanks Sue and Hazel.

I might explore this further.

I`m quite happy being with Dhiren and it would make me much more relaxed if I didn`t have other things to think about.

I will let you know.

Love xx

 

[jude1950]

Hi Sylvia,

I don't know about direct payments sorry.

When Jim was at home I got to the stage where watching out for Jim and running the house became too much. Like Dhiran Jim would not have any outside help either crossroads or a sitter indeed anyone coming to the house.

I dug my heels in and said I needed help with the house work as due to my RA it was too much for me. He reluctantly agreed only if I was paying out of my pension as it was me who needed the help!!.

After the first week he said:

Jim How much are we paying her?

Me £7.00 per hour

Jim. Thats too much tell her we don't need her

Me Oh yes we do I cannot manage on my own.

Jim I can do what she does pay me and get rid of her!!

The next time she came he sacked her luckily she knew all about Jim's dementia and carried on coming anyway.

love Judith

 

[Grannie G]

Hello Judith.

That`s what happened with my mother.

I got her someone to do her cleaning, a lovely local girl who worked in a care home.
My mother went around the house after she`d gone, picking up bits of `fluff` she hadn`t cleaned properly. And my mother gave her the sack.

Thinking about it, I can`t see Dhiren coping with anyone coming in to clean. He`ll feel in the way and feel the need to creep around so as not to be a nuisance. That`s what he does if anyone else is in the house.

And because he vacs he thinks the house is clean.

Ah well. Worse things happen.

 

[TinaT]

Dear Sylvia,

You seem to be following in my footsteps! Two years ago I had direct payments for Ken and employed a carer. Richard came into our lives - a most lovely person! He came three mornings each week to wash and dress Ken and I was supposed to go out at least one morning each week for 4 hours to my advanced Spanish classes.

Ken hated me going out of the house, although he would allow Richard to wash and dress him so I stopped going to Spanish classes. At the time my mother was also very ill and needed a lot of attention, Ken often had home appointments with occupational therapists etc., which clashed with my Spanish classes and I just couldn't manage to get to classes on the necesssary regular basis.

Richard used to come very early (about 8 am) and as I am not a good morning person, although it was good for Ken (who has always been an early morning person) it was difficult for me. Eventually I learned to put Ken's clothes out the night before in another room and I could stay in bed a little longer. But I was so embarrassed at the thought of Richard having to look after Ken whilst I stayed in bed that I couldn't do this either.

So we moved on to the next phase where Richard washed and dressed Ken, then cleaned windows and did some heavy work in the garden for me. I felt a fraud but it did work for us! Ken never did like Richard, he wanted only me. I could not leave Ken alone with Richard as I was always worried that Ken would be rude and Richard would decide he had had enough of him. I did get a half hour if the weather was suitable when Richard took Ken out in the wheelchair for a walk.

I found that the Local Authority who helped with the direct payments were very good. Richard and I never told them about the 'jobs' he did for me and they never asked. As long as I kept the accounts records clear and transparent, I had no trouble.

It was never easy for either Ken or myself to have someone coming into our home. We did have a lack of privacy and as the bungalow we live in is very small, we often got in each other's way when Richard was with us. I liked Richard a lot and he has remained a good friend to this day.

My advice to you Sylvia is to find a good carer who will 'grow' into your way of working and accommodate himself/herself to your needs. Once you have the direct payments operational, I'm sure that you will find your own way for the carer to help both yourself and Dhiran.

xxTinaT

 

[Grannie G]

Thanks Tina. All I need to do is find a carer. Easy Peasy.

 

[TinaT]

Have to say Sylvia that my LA were so good in helping me to find a carer. They have their own department who would deal with insurance, social security payments etc. They even wrote out the advert for me to put into the local paper but I decided to use an agency and lo and behold, I struck lucky the first time as Richard was working for this agency at the time.

I know it seems such a duanting task. I remember thinking, here I am, new to this area, don't know anyone, and how on earth will I find someone to help us? How will I cope with it all?

I was very luck I suppose as it all fell into place so quickly and so well.

xxTinaT

 

[Grannie G]

Thanks Tina. I`ll bear it in mind. I haven`t the energy to start on that road yet as when I do, I need to be sure Dhiren will be OK about having someone in.

We are managing for the present, he is self caring, only needs help in the bath which is not a problem.

Life is relatively peaceful , tiring, boring, repetitive, but peaceful. I don`t want to rock the boat.

But when the time comes I think this might be the best way to go.

Love xx

 

[lesmisralbles]

Dear Tina

I need a Richard

Can someone find me one??

Just a few hours a week.

It is not a lot to ask.

Barb XX

 

[BeckyJan]

Hello all:

I am very interested in all the posts re D.Payments. The carers I get each morning and the 4 hr. weekly sitter are wonderful.

However, I wonder how they assess the amount of care we need. I have just quoted my allowance and yet similar folk in our area get much more.

I have written to our SW for more info - no reply! (what a surprise). (

Is it worth a new thread on this Sylvia, rather than hijack this special one?

Love Jan

 

[Helen33]

Hello Jan

Is it worth a new thread on this Sylvia, rather than hijack this special one?

I would say of course it's worth a new thread. Any new situation that you need to talk about is worth a new thread. I am sure we will all be interested Jan and your situation alone is worthy of its own space. Why don't you just start one and see what happens?

Love and best wishes

 

[gigi]

I'm interested in this too...

Because of mum's situation...and Eric's changing situation...I've asked if I can have more help in any shape or form.

I can't. I asked if I could "trade" the Day Centre place for more hours at home caring. Different budget.

However....because of Eric's current situation...I could have help at some point in the morning to get him up and dressed...and to do the reverse in the evening....well I've refused that.

Eric wakes up when he does...and goes to bed when he does...they don't seem to get it. People coming in to "help" is a lovely notion...but not practical at the stage we are....even though he is at risk of falling.

It strikes me that help is there....but it's not the right sort of help.

I know nothing about direct payments re our situation...it's never been mentioned to me.

Apparently if we want extra help over and above what we are eligible for...we have to pay for it.....

Confused or what....

Love gigi xx

 

[Grannie G]

Sundowning/Paranoia?

We have had a few very calm and peaceful days, and I was beginning to feel secure in the peace, thinking acceptance had come, the worst was over.
As long as he was not put under pressure, not allowed to get too tired, able to call the shots, he was contented.
We were sleeping well, in fact sleeping so well we were both only just up, but not yet dressed, when CPN Terry came on Friday at 10.45am.
And Dhiren was ashamed.
`He will think I am a parasite, lying in bed late, living off the state, not working.`
He continued in this vein for the best part of the day, worrying about people knowing he does not work, worrying they will think badly of him.

Yesterday Sundowning began at 2.30pm. and lasted the rest of the day.
It started with going home to his grandmother`s farm, developed into resentment over my control of his money and took in paranoia along the way;
I have not been to see him all day.
I do not want him here.
I have hidden the food, he has not had a bite to eat all day.
He has a terrible mental illness.

He was wandering round the house, opening cupboards and drawers, opening and closing the front door.
At 6.50pm he got his hat,
D `I have to go now, they close the doors at 7 o`clock.`
S `Where do they close the doors?`
D `At the place where I live.`

Then he sat with me, then went into another room, saying he could feel I didn`t want him here.
He went to bed at 8pm then got up again. He didn`t know where to put himself and I couldn`t reach him.I could do nothing to reassure him.

I did manage, by midnight, to persuade him to come to bed, but after lying by my side for several minutes he got up saying he could feel I did not want him there.
He spent the night in the living room.

I got up this morning to find the living room full of clothes ready for packing.
He asked `What is happening to me?` so he still feels strange.
I told him he had a bad night and have persuaded him to go back to bed for a good sleep.

 

[Helen33]

Dear Sylvia

[And Dhiren was ashamed.
/QUOTE]

Oh dear Sylvia - here you go again. I now know what you mean when you just start to feel a sense of 'normality' and then something smacks you in the face to wake you up to the new reality

Maybe you can keep a mental note about the shame because it could be a trigger point - then it's a dementia and it may not

Hope Dhiren gets some rest and that he recovers quickly from this episode.

You take it easy too Sylvia.

Love

 

[BeckyJan]

Hello Sylvia:

I am so sorry you have yet another of these episodes. I can only hope that it is a blip and the peace and contentment will return (until next time!).

I do hope today is better for you.
Love Jan