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dont no if iam comeing or going - Page 5 - Carers UK Forum

dont no if iam comeing or going

Share information, support and advice on all aspects of caring.
221 posts
thay say its what terry wants but if i did run away or killed myself then it wont be what terry wants because strat in a carehome he will go maybe i should say that to them he put his name on some form awhile back agreeing to that there is no way he could look arfter him self he needs 24 hour care i am not going to kill myself but i have come close to it just lately
What Terry needs and what Terry wants are entirely different. Of course he wants to be home with you 24/7, but you can't care for him 24/7. He doesn't want to be ill at all I'm sure, but he is. I want a magic wand (to make everyone better would be nice!) but it doesn't mean I can have one. It's made you ill trying to manage for so long. I do hope the palliative care nurse can arrange something better for you. All I can offer is a goodnight hug. Take care.
Fairymagic, all you have to do is say "I can no longer care for Terry. You have until (insert deadline) to make alternative arrangements." Put it in writing to confirm it. You have the legal right to do this, and if anyone tells you differently they would be in breach of so many laws it would be difficult to know where to start!

You can start with:

NHS & Community Care Act 1990

Carers (Recognition & Services) Act 1995

And the list could go on!

But.....you do have to mean it.
It's such a shame that the professionals have not considered all this legislation when making their assessments. They only seem to know the bits which are avoiding them spending more money. It's not your fault that Terry has severe problems, but you're the one being effectively punished. Another hug from me, remember there are people on the forum right behind you on this one. Your needs matter too.
i want to phone the palliative care nures but i dont no what to say every time i try to say help i get upset because over and over agian the dns and socal worker go over me and do what thay think i cant get throu to no one i hate every think about my world i wish it would end why thay can see whats happerning i will try to phone her but i dont want to sound like a silly mare that cant cope even thou its partly true
You're not going to sound like a 'silly mare' and you can't cope because they do not provide you with what you need to be able to cope.
None of this horrible situation is of your making and they should be looking at both of you, not just what Terry wants.
If Terry has signed a form consenting to needing 24 hour care, that's exactly what they should be giving him.
Seriously, tell the palliative nurse you cannot cope AT ALL in the state you are in, you need a break and you need it like yesterday.
Ann, please ring the palliative care nurse, you will know from your previous contact with the palliative care team that they are there to support both of you, not just Terry, one phone call could make such a difference to both of your lives which is what I and everyone else wants for you, you both deserve better than you have so far experienced.
hi i will phone the p nures on tuesday because i am going to go mad you no the carera that said she was just as inportant as the dns and anyone ealse well saterday about 12 lunch time there was a bangbang at the front door it was so loud i thought the door had come of the hinge it was her she walked past me and went up staires to terry would not look at me then she came downwent into kichen and shouted really loud the beding is by the washing macine went back up staire then she came down walked up to me and said sigen this not looking at me it was her work sheet then walk out the door all this because thay have been told off she was really nasty stomping around would not look at me i feltlike i should have crawed under a stone i could not stop shaking and just sat and cryed i am getting upset just writing this down i should have bashed her but i was so shocked at her behaver in my home ,i am not going to let this go thank god my son heard it all ,then today this older man that sometimes comes in turnd up about 2 saying he had only just found out he was to come and do terry 5 mins before he got here any way terry was aready up i had seen to him i was hopeing it was going to be her, as he was going out the door he said i am very sorry i forgot to come,and every one wonders why i am finding it all so hard i think i have upset terry because i have told him its me or them he cant have both and he has to tell that socal worker and dns to piss of or i will leave i wont but i am hopeing its enought if we can get rid of them then i think the palative nures will be the ones to help if not then i just dont know
Hello again, another bedtime hug from me, you certainly need and deserve one. Who on earth does this carer think she is? Her behaviour is totally unacceptable. I can't understand why the agency are still employing her at all, never mind sending her to you, after all your complaints. I would be going crazy too. It's just not good enough.
thank you i will do somethink tuesday i WILL CROSS MY HEART love to you and thankyou for hugs xxxxxx
221 posts