back to square one again.

i spend months struggling on my own whilst looking for a carer to assist me with basic things like bathing, dressing etc. i just get them used to my routine then they leave. leaving me struggling for months on my own to look for another one...i do not have the energy for this to continue, i am sooo tired of struggling i don't know what to do. when i talk to the professionals they just ask what i am doing to find a carer but no offer of help, the PA finder service for the area can't find one for me because my care allowance (direct payment ) only allows me 8 hours a week , i need help getting up on a morning so need it split through the days, only carers here don't want to do odd hours here and there, they want blocks of hours, i understand why, but that doesnot help me.and to top it off, i am still living in my unadapted home and agencies will not let their carers come in because my front door lock is broken so they would have to kick the door to get in. i can't aford a new door and think it a waste if i could as my home is going to be adapted soon so will get a new wider door then.
i am sooo fed up struggling, have just spent 12 days with no help at all and now my carer has just told me she is not coming in at all this week either, and is not sure if she will come back after that either too.
why is life so difficult when all i have ever done is try my best to help others in any way i possibly can. have i really got it so wrong, should i have not given a toss about anyone but me? well it seems that those who don't give a toss have a much easier life.

the care system sucks.

if you're not in a wheelchair, can't talk, can't hear, can't see, then they don't show an interest

if you have the worst disability in the world, they would be like... ah, we need to find a carer quick and stuff... anything else, is more like... oh, this person can wait- it's not desperate.

just the way it works... i dunno why!

i'm in a wheelchair myself, and you don't want to hear some of the shocking care stories i have! (and it extends more to just finding a carer)

and that's just finding a carer- their's things such as finding a colledge that will accept my mental illness, getting the right support at the colledge, i've had it all!

If you don't take care of yourself first, then you can't take care of others.

because i look like i am coping, others are not interested that i am not, they still come to me for help, even when i try to say no they just bug me until i help them just to get them to shut up and leave me alone so i can try and sort out my problems!
just wish i had a 'yellowted' to lean on like others have as it gets very lonely and tiring having to sort everything out myself.

my disability is classed as pretty bad, but because the dx is uncommon and although it affects my physical abilities of walking, sitting up reaching/picking up things etc it is classed as a mental health condition so the adult services run a mile to avoid helping me, the mental health team are great but have told me many times they don't know how to help me and when i tell them, they are so limited in the physical support they can offer it is nonexhistant!
I have been fighting 4 years for help to adapt my home as i am 24/7 wheelchair user. i can't even get an electric wheelchair eventhough i can't push myself in my manual one so had to buy my own scooter to get out of the house.

i totally understand the difficulties and horror stories you have, i have a whole list too, from nightmare carers, college classes being relocated into rooms with steps or on the third floor with no lift to get there and loosing my deposit because i did not get up to the class, to the agency employed by the council to help find carers being relocated five miles away to a town which is impossible for me to get to, to local bus company changing their guidelines on which scooters they allow on the busses so i no longer can use them, yep i got em all!

it seems to me that unless you are terminally ill or have a common dx then you are not considered worthy of help.