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dont no if iam comeing or going - Page 4 - Carers UK Forum

dont no if iam comeing or going

Share information, support and advice on all aspects of caring.
221 posts
I'm really glad you've finally got a professional that cares. Hopefully you will now get the help you both need.
got woke up early terry couldnt find the tape for his valve and he had droped his apple juice every were ,the carera came late scared the life out of me she had used the key safe and let her self in i hate that she has been told not to do it she is not comeing back none of them are i have really had enougth of them i was telling her how upset the pn was when the other carera had come in the liveing room and sat down trying to get envoled well this carera got really trapy she said that the careras are just as emportant as the dns and should be envoled in talks and any think about terrys care when i said oh no your not your told what to do and your not terrys careres i am your just here to help she wasent narsty to me but she was full of how emportant her and the others are and thay were as emportant as the dn i am i wrong are thay terrys careras am i not are thay on the same leavel as dns am i going mad this is all i need but i am not going to let this go its bad enough without all this crap my son thinks i am out of order letting terry gointo a care home well he did get it in the neck i said do you rember about 2 weeks ago you came round saying how sick you were with the kids being ill and how you was up most nights and how you needed some sleep i said try doing that day and night for weeks and weeks and weeks with out a brake in fact try doing it for years then you can have a go ya mum what if it was dad doing it to you now i am upset agian i need that hole a very deep one
Hi Fairy

Sorry you've had a bad day.
Perhaps if your son thinks looking after his dad is an easy job you should suggest he does it for a few days whilst you go away for a break
You know how much care terry needs and that you need a break desperatley you stick to your guns. The important thing is you both get the help you need.

Take care x
Dear fairymagic,
Another hug from me. Carers and care agencies really have an over inflated view of themselves, from my experience. Only you know how difficult it is to care 24/7 for your husband. Many of my friends were very critical of me when my son went into residential care, but there was simply no alternative. After 18 months of no respite whatsoever, my health was in ruins. Wherever he has lived, he has always come home to his parents more than anyone else; and he knows that I am always here to support him as much as I can; and he comes home to every single family event and steam rally we go to. I devote all my time to him when he is home, and we have much more fun together because I'm not totally exhausted. I'm sure that when Terry goes into residential care you will still be with him lots, but he will also be receiving the medical care that you cannot get for him any other way, and you will be able to sleep better, confident in the knowledge that he is being well cared for. Sleep deprivation is a terrible thing, and I hope that the wonderful nurse who now visits will be able to rapidly arrange everything to your satisfaction. Hang on in there.
Care workers do not need to be involved in any planning to do with the medical side of Terry's care. They are employed by an agency to follow a care plan that has been worked out for them. I'm not belittling the job they do, but deciding what is best for Terry is between Terry, you (his carer) and the medical team.
If your son thinks it's so easy, tell him it's his turn.

you no i love you all thanks for being there for mei just wish i can be of help to you one day you are my rock right now big hugs and lots of love from me ann x
i dont no why i bother that nurse was brillant but terry has told them he will go in resbit to give me a rest but wont go there to stay i serpose its better than him not going atall so i thought so now the socal worker has told him that if he dosent want to thats fine but more careres will have to come in she is going toanother agancy i keep telling them no but now there saying at the end of the day its what terry wants and the careres will help i dont want it why cant thay see i have had enought i dont want more strangers comeing in its bad enought now she is also sayingshe is going to bring another sort of nurse in and shewill decide weather or not he needs to go in a carehome or be nursed at home,there saying i need to see doctor but its them that are doing this to me i am thinking runaway let them allget on with it there is no point its what terry needs if you want a brake someone can come a sit with him were am i goner go cant walk propley scared to go out on my own thay have all knock the stuffing out of me well if thay want the careras to come in thay can do every think i dont care no more ,,,,i bet your thinking feeling sorry for myself i am i will probly be ok in the morning just want to runaway at the moment.
Sadly when your carees wishes go against what you want and probably what is best for you both, their wishes come first, until such a time as a care or nursing home is the only option.
Just remember though that the duty of care falls on them, not on you. You have the right to refuse to care. You might want to remind the social worker of that, it might help him/her to look at your point of view!
Ann, I am just so sorry, Myrtle is correct, what Terry wants takes precedence and it can feel as though your marriage, your husband and your home have been taken over by the State and you no longer have any relevance or rights. But you are still Terry's wife and his primary carer and the social worker and the professionals do need to be reminded of that because Terry does not exist in isolation and a good social worker would try to work to support both of you, not just Terry even though he is the client. And I also think that you and Terry might want to talk about what you both want on your own without the professionals present and see if you can reach a compromise which works for you both.

It is truly horrible having people come and go in your home and some of them do treat it as if they own it and you are just there to let them in and out and fetch and carry and I can recommend having one room just for yourself where no-one else is allowed to go so that you have your own private space, a place where you can go and close the door to have a bit of respite from what is going on in your life at the moment.

It might also be useful for you to see if there is a local carers centre, there should be one for your area although it might be some distance from you, and if so contact it and ask to speak to the carer support worker. You might also want to consider advocacy to ensure that your point of view is also taken into account, this might be through your carers centre, Age UK provides advocacy in some areas, I do not know how old you are but they cater for anyone over 55, and there are other organisations which provide advocacy so Googling "Advocacy" and the county where you live will hopefully find an organisation which can help if you decide that this is for you.

Difficult situations can become impossible as a result of professional intervention, causing immense stress and distress, and my heart goes out to you, I hope that you can a way to spend the rest of your time with Terry as you want, please try to contact your carers centre and/or an advocacy service, they should be able to help and support you and whilst we cannot give practical support we are always here for you.

hi i have decided that i am not going to be pushed about no more( thats a joke) so now when there are comeing round the socalworker and the matron i will leave the room and if thay say one word to me i will tell them were to go i will not have any think to do with it its terrys care not mine so talk to him i am going to be the same with carers i am not going to do any think for them and if thay ask i am going to say your the carera you do it,the last to days have been hell for me i have never felt so beatern or felt so unhappy all this hell because thay want to save money all we ask for was a little bit of help and that was for restbit care so i could have a brake and someone could see what is happerning to terry while in restbit instead the socalworker did what she wanted yet tonight terrys not well were are thay so nothing has changed i am still faceing it on my own because there only here in the day i was thinking i mit try and get in touch with that palative care nures she seemed to no i dont no yet i seem to be lost i feel beatern and whats the point because i will always look arfter terry and thay bloody well no it
221 posts