Message Boards for the CF Trust

Replies: 8 Pages: 1

Angel

Posts: 491
From: London
Registered: 17-Feb-2004

carers
Posted: 23-Nov-2006 18:25

Reply

After reading Sweetpea's reply to my carers post it struck me that a few other people might have considered getting a carer or had it suggested to them but turned it down. My hospital brought up the idea back in April, and I turned it down as I just couldn't believe that I needed one. After coming out of hospital this summer I finally admitted defeat and agreed to trial having one come in in the mornings, and I am so glad I did.

Anyway this is copied from my blog which I posted just after my carer started, incase it is helpful to anyone to read

...

I have bitten the bullet (can you say that?) and on advice from my hospital got some home help. This is somewhat difficult for a young 22 year old - who feels like she could leap up off the sofa and start dancing around to Fame at any given moment - to get their head round. Home help is something you envisage needing when you are 80, not when your peers are either still studying or just beginning their careers. In fact I will admit it is even slightly embarrassing just typing this, and I don’t even know why. Must be a pride thing, no one wants to be dependant, particularly not at this age, but that is one of the reasons I am posting this, so people (particularly fellow pwcf) can see that sometimes in life it is just a case of swallowing your pride and asking for help...and yes I find doing that as hard as the next person.

This morning a nice lady from the home help company turned up, and she really was very nice. She was professional and my feeling of utter stupidity because I am aware of how well I look and how young I am quickly evaporated. She was determined to let me take the lead and to do things to help rather than hinder, which meant even though social service form states that I am to be helped with washing and dressing (not general living needs or domestic chores, it’s a bureaucracy thing, I am not entitled to help with that as I live with someone...don’t get me started) she used her initiative and put a load of washing on whilst I was doing my first nebuliser.

By the time she left I had nice clean hair, had breakfasted, washed, dressed and done my morning tablets and nebs, and miraculously did not feel the need to go back to bed to sleep, it was the most bizarre and fantastic feeling. I almost felt guilty as I had this energy left (not really used to that) which meant I could sit down and start tackling some areas of the campaign, something I would much rather be expending energy on

Kim (summerdays)

Posts: 301
From: south wales
Registered: 15-Nov-2006

Re: carers
Posted: 23-Nov-2006 18:36

Reply

Hi angel , sounds great to me that, how do i go about getting a carer ? god i'd love one infact !

Thanks kim xx

Angel

Posts: 491
From: London
Registered: 17-Feb-2004

Re: carers
Posted: 23-Nov-2006 18:37

Reply

Hi Kim,

It was set up through my hospital, they suggested that I need one and when I agreed to it they sorted it out through social services. I had to have an assessment to see what my needs were. Best thing to do is talk to your hospital if you are struggling home alone, best of luck

Kim (summerdays)

Posts: 301
From: south wales
Registered: 15-Nov-2006

Re: carers
Posted: 23-Nov-2006 18:40

Reply

Thanks angel, im ok now really well but its the pred, when it ends im going to be blue again, yes im going to look into it, cheers

kim xx

fairygood7

Posts: 43
From: wales
Registered: 09-Nov-2006

Re: carers
Posted: 25-Nov-2006 23:51

Reply

Hey kim il be your carer anytime. x

salli

Posts: 22
From: worcester
Registered: 21-Mar-2004

Re: carers
Posted: 29-Nov-2006 21:38

Reply

Also in April when I was ill I was suggested a carer, but thought nope, im not an invalid. Anyway I had social services come to me at home to work out what I needed. I had a lovely lady called carolyn come to me. she could see i needed help and suggested community care grant, rather than someone come in from social services and with the grant I pay whoever to do the looking after. As it happens I am able to pay my sister for 2 1/2 hours a day 5 days a week to come and look after me, do my washing, ironing, dusting, polishing, hoovering, she also makes my bed, as in change duvet and sheets, I can still make my own bed! lol
Oh also cleans my bath - as smell really gets to my chest. With the community care grant, you can choose who looks after you, could be your mum if you liked, but that way, some people who actully dont understand CF could think - well they actaully look fine etc... well if it helps and it takes your fancy enquire about community care grant - it doesnt affect your benefits either if your on them......

Take care

sally

Sweetpea

Posts: 83
From: Scotland
Registered: 09-Nov-2006

Re: carers
Posted: 29-Nov-2006 23:42

Reply

I have carers that come in from a company (wont name them) and I have had a lot of problems with them.

Mostly them not understanding my illness, as you said Salli; thinking you look fine. They have asked questions such as "is there any point in us coming in, does it benefit you"? I also had one say to me, about tx, "whats the point in having a transplant when they don't last that long anyway".

When she said this it really upset me and I was in tears when she left. I would like to be able to get someone that I know to look after me, like you suggest Salli but I have the problem of the people I would let do it already work a lot.

Sweetpea x

MandyL

Posts: 26
From: Lanarkshire
Registered: 06-Nov-2006

Re: carers
Posted: 30-Nov-2006 11:44

Reply

Hi there, i am a cf mum just jumping boards but i found this thread fascinating. I didnt realise that pwcf could get this from the social services, my daughter is 11 yrs old so automatically i just think its down to family to look after their children wcf as i am and will continue to throughout her life. I have just recently decided to go and do a degree in social work to become a cf social worker but i didnt realise that maybe i could be going into peoples homes who have cf and helping them. I wonder if there is a job opportunity there? I wonder who i could speak to about that as obviously i would understand more to your neeeds than maybe someone who doesnt have the knowledge. Mmmm, this has got me thinking! x

salli

Posts: 22
From: worcester
Registered: 21-Mar-2004

Re: carers
Posted: 30-Nov-2006 12:14

Reply

well get intouch with your cf socail worker sweetpea and ask them to refer you to socail services. They come and evaluate you and then mention to them direct payment. that you would feel better having direct payments than someone come from them or whoever randomly expalin you feel at ease with someone you can choose, as its your health they will help you as much as possible. thats what i did and i got my sister too. She also works, so she gets taxed a fair bit on what she earns, but she does it bless- cos she loves me!! haha

Best Of luck and let me know what happens. Yes I do belive also child social services can help while you do things for your child too. best you can do is enquire. When I was little I had a physio come in and do my physio while my mum couls get on and prepare dinner say or clean. also there is a trust called (i cant think) it will come to me, thats it ... crossroads .... they are carer service who they come ot your home and do physio for you!!

Hope any of this information helps.

Sally xx