Carers -Lets support each other

sharon59

A similar theme seems to run thru all our introductory posts-how we are COPING/MANAGING with what life has thrown at as but sadly even a small bit of exra help from outside could really make the difference to us.Ablue badge or a local support group dont sound much to an outsider but would potentially be worth there weight in gold.
If you look at what we as carers save the country its crazy that not more help is out there.
Off my soap box now!!!!!!

cw18

We were "lucky" in that DH got a blue badge very quickly -- but I guess that's because at the time we applied (Spring 2007) they didn't expect him to be around for more than a few months.

What really frustrates me is how low the carers allowance is -- and that they then have the nerve to make it a taxable income !!!

Even from next April (when I won't have enough of anything else coming in to mean it has any tax deducted) it's a pittance for the 35 hours you have to spend as a carer in order to get it.....

As neither of us will be working I/we also have an underying entitlement to an extra carers premium on Income Support which is worth £27.75 -- making a total of £78.30 for 35 hours work.... or just under £2.24/hour, which doesn't measure up very favourable against the minimum wage of £5.73 :mad:

smartygirl

sharon59 wrote: »

I am the main carer of my SIL who lives with us and has Down Syndrome and also recently diagnosed with Alziemers disease.Would love to be able to share the bad and good times with people who are also carers.
Wonder if people think this appropriate -not money saving -unless if you rant here and let off steam/share worries and it saves us being carried away by the men in white coats!!!!:D

Hi Sharon,
I can recommend an excellent website, where I think you will find support (at least online) It is called Daily Strength. I have made quite a few friends (online) and it helps.

lupiedeb

my husband is my carer but he is also a contact for carers for Lupus UK as they didn't have anyone out there. As my husband rightly said you have people whom you can talk to but who can I talk to???

tattoed_bum

just bumping this thread as i dont know about all of you but at christmas and newyear time i find it really stressfull and i have started this month with ten appointments and meetings lined up for my son already ,and it's only the tenth lol .
i dont know if this is a good thing or bad thing but oh has just been dropped to 3 day's a week at work so although money will be tight at least i will have a little bit more support .
how are everyone else getting on ?

Jvic28

Hi Everyone,

My boyfriend is a Carers Assessment Worker in Cardiff (In fact I think he's the only one) I've seen it mentioned a few times but it is worth getting in touch. It's about what you need to help you. Given that he's the only one he is very busy but get your name on a list and get the help you deserve/need. I think you all do a great job and know I couldn't do it myself.

covlass

Hi I'm a carer for my DD2 who is nearly 13 and has autism and severe learning difficulties , Hydrcephalus, and challenging behaviour she was born 9 week prem but is a real fighter.

I think this thread is a lovely idea.

My DD1 is amazing with her sister and will be taking her options at school soon, she wants to work with special needs children, she isn't sure about what type of job but she just wants to help is how she put it.

My support group contains my husband and 1 friend, and thats it. I dont know why but niether side of the family show any support. Some days are harder than others but I would not change my daughter for the world, because without her disabilities she would not be the child she is today.

NoahsPennilessMummy

I am carer for my son who is 5 and has autism and auditory processing disorder. The autism team are pretty sure he has dyspraxia too and after being on the waiting list for 18 months he has an assessment at the dyspraxia clinic on friday.
He has the usual autistic traits and is a real character, i love him to bits.
It is a real learning curve as new problems crop up all the time!

simpywimpy

My son has brittle bones and it's the worry that I struggle with. It's a constant thing in my life that I can't share or shift onto someone else but sometimes I wish I could just switch off to it.

It drains me some days, especially days when there is more danger of him having an accident such as when the weather is icy, or if I know he's out in the evening.

If the phone rings after a certain time in the evening, my heart is in my mouth and I find myself holding my breath while I find out who it is.

It's a terrible way to live but I can't let go. Does anyone else have the same problem?

lottylouj

hi every one, ive read some of the posts but couldnt read them all as it made me cry.
my beautiful DD (aged 9) has epilepsy(absent seizures) and very severe learning/ social and developmental delays. she is currently going through accessments for autism, and also waiting to see an genetasist (sp??). She has started asking why she is different from other children, which breaks my heart to hear.

im a single parent and also have a DS. im feeling very alone right now, dont know even if i should be posting this. i feel like life is a battle ground with her, i feel more of a carer than a mum to her at the moment.
i dont know a lot about autism but i have a feeling she is on the spectrum.
this is such a steep learning curve for me and im sure im not alone.
thank you all