OT---why does no-one understand???

[lydia150970]

Don't let social services do their usual "we'll get back to you" bit, they are very good at tht (have had loads of dealings with them regarding grandad), keep on at them, really bug them because they will deal with the ones that give them the most grief first and the nice compliant families have to wait. You really have to stand your grand with them, its the only way to get them to do something to help you!!

 

[cocktailprincess]

So glad you feel a little better today, but please don't make out like it was your fault for being in a bad mood yesterday. You are perfectly entitled to those feelings of frustration and anger. It doesn't make you a less careing mother or loving wife to feel unhappy with your lot occasionally.

You sound like a remarkable woman, who is incredibly brave and strong. I sometimes have the occasional moan about relatively trivial things but you have humbled me with the way you are handing an immenseley difficult and prolonged situation- although I know your son must give you an amazing amount of pride and pleasure you still deserve a medal, babe!

:happy096:

 

[RM07]

We're all allowed to rant sometimes... and just because we've been delt a particular hand of cards doesn't mean we have to carry the 'burden' (not implying you see your son as a burden) alone. At the end of the day you are only human and have your own basic needs and wants that need to be met.

Keep on at social services; it is so true about those that shout the loudest get noticed. If it means calling them every other day then so be it!

If you think a mobility car will help then it really is worth looking into. I don't know the circumstances in which you lost your older son but I'm sure he wouldn't want you feeling restricted by not having another one. It is really hard though to let go of associations we have with objects :hug99:

 

[TeresaTT]

I agree with Lydia. You have to demand help from social services. You have to keep chasing them up again and again. Threaten to make a formal complaint. They will see to your needs to shut you up. There is help available but unfortunately you have to fight for it.

I am glad you are feeling better today. I hope you can get more help as it makes such a difference to the quality of life.

 

[Minders]

The previous suggestion about getting a Carer's Assessment is a very good one. Anyone who has responsibilities for caring for a family member, be it due to disabilities, mental illness, etc, are entitled to a Carer's Assessment. And through this, your support needs will be highlighted and help should then be provided accordingly. You really should do this if you haven't already. You can't just be landed with this with no help. The Carers.org site is a good one. I used to work for HFT which also helps adults with learning disabilities and they had a very, very good Carer Support Network. There's lots out there. Even if you don't get the support you need at home, there is plenty available to you on the outside. You just gotta tap into the network... good luck!

 

[SLACK ALICE]

Thanxs all
I have had my review( the part where you fill all those stupid forms in about wot i want and wot son wants)
She said that the FAB team ...(Finance and Benefits) are not touching any cases until start of april and that there is a backlog !!! typical
aparently i have to wait for them to asses my needs and all my money coming in to see how much I will have to ''DONATE'' towards my sons care !!! makes ya laugh, dont it
until then i cant do nothing. We lost respite because son is 18 and it stops when the child is 18. I still have the hospice but that is a bit hit and miss we only get 13/14 nights per year so i tend not to use that all up . We save it and then 99% of the time when we do ask for respite we are turned down so we dont bother !
We have just been offered a break... in may.. take him in at 2 on a friday and pick up at 4 on sunday.. we shall turn it down because it takes us a hour to get there and hour back- we then just have the saturday (because we are so used to doing nothing we dont do anything) then we hang around till its time to collect him on sunday so its not really worth taking him .
anyways We will see wot happens

 

[TeresaTT]

I am dreading the move into adult services as there is so much less support provided than children's services. At least I've got a few years to go yet. Like you, I will lose most of my respite and I won't get as much in a direct payment to employ carers either. I just hope that I am physically still able to look after my son when he is a huge adult that will be fully mobile but acting like an active toddler and probably doubly incontinent.

Hang on in there and keep pushing for services. Don't let them wear you down.

Teresa

 

[RM07]

We have just been offered a break... in may.. take him in at 2 on a friday and pick up at 4 on sunday.. we shall turn it down because it takes us a hour to get there and hour back- we then just have the saturday (because we are so used to doing nothing we dont do anything) then we hang around till its time to collect him on sunday so its not really worth taking him.

If you would get back home at 5pm Friday (giving an hour to settle him in) then until 3pm Sunday when you would have to leave to collect him I work it out as 46 hours.

That is actually quite a bit of time to have... and if you know it is coming up you could plan to do something in those hours... either with your husband or a friend.

I would really reconsider turning the offer down... from your first post it does seem like it would be worth it.

 

[Tizzie00]

I cant offer anything but hugs and good thoughts.

No wonder if this is your life you get pi**ed off and need a rant, flippin eck gal!!!

I cant imagine how hard your life must be in a day to day routine as you are, with no time for yourself.

Feel a bit of an idiot now for being able to have as much time as I want and still moaning.

Keep your chin up and at least we are moving in to the decent weather with long light days.

Hope you feel better and get a bit of help soon, god knows you deserve it.

Hugs and kissexxxxxxxxxxxxxxxxxx

 

[lydia150970]

Thanxs all
I have had my review( the part where you fill all those stupid forms in about wot i want and wot son wants)
She said that the FAB team ...(Finance and Benefits) are not touching any cases until start of april and that there is a backlog !!! typical
aparently i have to wait for them to asses my needs and all my money coming in to see how much I will have to ''DONATE'' towards my sons care !!! makes ya laugh, dont it
until then i cant do nothing. We lost respite because son is 18 and it stops when the child is 18. I still have the hospice but that is a bit hit and miss we only get 13/14 nights per year so i tend not to use that all up . We save it and then 99% of the time when we do ask for respite we are turned down so we dont bother !
We have just been offered a break... in may.. take him in at 2 on a friday and pick up at 4 on sunday.. we shall turn it down because it takes us a hour to get there and hour back- we then just have the saturday (because we are so used to doing nothing we dont do anything) then we hang around till its time to collect him on sunday so its not really worth taking him .
anyways We will see wot happens

Adult social services are definintely worse than Childrens!! However, I reiterate just keep banging onto social services, thats what I did - and I wrote to my local MP, to the prime minister and copied social services in on all letter and replied to every letter I had from them - especially those where they lied in black and white - its the only way I'm afraid (and sent them recorded delivery). However, as an adult your son is entitled to help and you as parents and carers are entitled to help as well. The CAB are brilliant for telling you exactly what your rights and entitlements are maybe give them a ring? My grandad is in a lovely home now but I know damn well that whatever he got he wouldn't have unless I had been a right royal pain in the backside!