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Tuesday, 5 June 2007

Direct Payment, us & Looby...

I care for my husband Coo, who has Nocturnal Epilepsy (sleep seizures).
Coo's had them for 30 years and we've been married for 23 of 'em so it's not exactly a new experience for either of us!

Nobody sleeps much in our house!

In December 2006 we asked for help with Care from our local Social Services as it was all getting a bit much.
We'd had months coping with 30 seizures a night and we were struggling!
We looked at how things were and realised I hadn't had an uninterupted nights sleep since 1993, over 14 years ago!
We wanted to apply for a Direct Payment as this would let us buy in our own care,to let me get some sleep.
We found out using a Direct Payment, you could employ a member of your family or someone you know to help with Care needs.
We had never thought of using Social Services in this way before as Coo, would not accept external Carer workers.
During seizures, Coo needs someone familiar and couldn't cope with someone he didn't know...


Looby's our 19 year old daughter, she does not stay at home anymore, knew we were struggling with care and was prepared to move back 2 nights a week to let me have a bit of a break.
Our Social Worker was supportive and helped us sort the Care stuff.
After the initial assessments in December it took 5 months in total to set up.

Looby is now officially employed as a P.A. with us!
Coo's ok with things as he and Looby are close.
I can sleep safe in the knowledge, Looby knows exactly how to handle the seizure activity, limb jerking, running around, banging into stuff and the rest...
I can trust Looby to wake me if things are worse than usually.
Looby's cool too as she's only working part time at the minute and it's not too much of a strain, and also she's earning too!

Best of all, I now get to sleep for 2 whole nights a week...Bliss!

I'm finding things a lot less of a strain.
I didn't realise just how tired out I was, until I'd gotten some more sleep and I find I'm looking forward more and more to my sleep nights!
I now know, however bad it gets, at some point in the next few days I will be able to sleep but before the Direct Payment kicked in, I never knew from one week to the next when I would be able to rest.
I'm now feeling more positive about things.

Long may it continue!

maz x

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