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carer to caree - Carers UK Forum

carer to caree

Share information, support and advice on all aspects of caring.
not sure if this the ight palce to write this , but here it goes. Some of you are aware i care for my children youngest has aspergers and middle child has joint problems as well as learning difficulies and i help with muminlaws care she has demetia along with many other problems.
Ive been a carer for the bigges part of my lif but im becoming more and more dependent on others for help. I have arthritis in my knees and severe joint pain in most of my joints and feel exhausted alot of the time no diagnois yet for this. I try nd manage most things myself but everything is slower and harder than before. i walk with a stick outdoors as i fall and suffer alot of pain. Thing is after years of beong the carer to become a caree is extremely diffficult and isnt happening a such. I will try and explain, i can get days i can barely move off the bed or sofa as the pain is so much leaving me exhausted, not one of the childen or husband will consider getting me a drink or food and often will strop at me when i ask them to do something. Am i doing something wrong ? I,ve always tryed to make sure my carees are given there food drink and helped to wash and dress as appropriate. I am afraid of what the future holds if so uch is left undone if im unwell enough to do it. I feel pretty low about all thisand dont know how to broach this with my family ar even if i can withotu an ensuing agument where im left feeling guilty and in he wrong.
I dont want to be like this or feel this way no more, wish i could make them understand

rachel
Sorry to hear of your problems and can understand just how you feel.

Perhaps a carers assessment would be a good start. At least it will allow you to say what you can and can not reasonably be expected to do and also set up a contingency plan for your health when it is very poor.

Hope someone is along soon with better advice.

Take care
Meg
Oh Welshie, so sorry things aren't getting any better for you ((((((((((((((((((hug)))))))))))))
A carers assessment sounds like a good idea, even just to make your family realise that you do need them to help you too.
Amazing isn't it? Were not allowed to be down or ill. My wife is just the same when I'm below par...............She has a go at me for not being able to jump to like I always can! Makes me wild!!!
Trouble is, I've been like you all my life Welshie, A flippin' pillar of strength. Always there to pick up the pieces. It's no good, you've got to make it clear to them that your health is failing and you need some help from them. To hell with it if they kick off, TOO BAD!!

I might be talking out of turn, if so sorry, but your not a bl**dy doormat and it's time they realised it.

Hope things get better soon,

Pete
I have gone in the reverse direction, from being cared for but being as independent and doing as much as possible for myself and us to becoming my carer's carer and finding myself expected to do the impossible for someone who is infinitely more dependent than I was, some of this dependency is learned and has as much to do with attitude, not helped by a physio who said that he did not have to do what he did not want to to Image , as difficulty in functioning and I do insist on my husband doing as much for himself as he can, it is also the only way in which I will be able to carry on caring for him. My condition is deteriorating rapidly and things are getting harder and I have found that the easiest way to cope is to find ways to try to adapt to both the disability and the increased care required, to change my priorities to meet the current circumstances and to simply accept that some things are no longer possible.

I certainly agree that a carers assessment is a good idea and perhaps looking at an Individual Budget for the people you care for so that you can adapt help to meet all your circumstances, I found having agency carers in made things more difficult but if you could directly employ one or more people to fit your joint requirements it should be better. As for things like rest, dealing with pain, sleep, I have just learned to go with what is necessary, grab what I can when I need it, it really is a matter of changing your mind-set as much as anything else and I was probably advantaged by already having to adapt to increasing disability so change comes quite easily to me but, tough though it is, I think that you will eventually find a way of coping, we all do, we have to.
I'd definitely go with the carers assessment, but as Parsifal suggests, some of this is about attitude.

People with Asperger Syndrome especially get used to individuals in fixed roles: you are a carer and that's it. You do all the room tidying, for example. One of the reasons that some teenagers with Asperger don't clear up after themselves. It's not their job - they never had to do it when they were small and accepting the change in roles is difficult for them to accept.

It can be the same with other learning difficulties and conditions affecting the brain - such as the dementias - because it doesn't fit the accustomed pattern, and change is confusing for people with dementia.

Either way, it's a hard one to break. All you can do is try to encourage each individual to take on a specific role - small steps - to ease your way. And make sure your carers assessment recognises the difficulty of just "passing on responsibility" to others.
Ironically i have no idea where to start although i have been a carer for years first with mum when she had cancer she had a social worker at the hospital thatarranged everything.
Now with my chidren we have no socail worker or outside agency helping, muminlaws care is my fatherinlaws main responsibility just some things fall on me as we live toghether hav got arrangements being made for more help that directions.
My aspergers son is the one thta helps best which is quite amazing considering what he was like just a year ago, but ive always been the one hes attached himself more too. He doesnt really tidy but will do things for me that he sees me struggle with. My eldest that has no problems has been the worse with the change in my health, im not sure if he just doesnt want to see it or he's struggling to come to terms with his recent tour of Afghanistan(which has left him troubled cant sleep ect) unless i keep on and say this needs doing that needs doing no one really does anything and then when i do keep asking they all start on at me that im in a bad mood all the time and all i do is go on at them, This all sounds so pathetic wrting it down.
I Cant physically manage to keep house and prepare and cook all the meals anymore but if i say nothing nothing gets done ive been left all day without food before now as my kitchen is on the floor down from our living area i wasnt well enough to go down there. I dont want to feel like the bad guy all the time and i can just carry on like before itd not that i dont want to far from it i give anything not to be like this anymore and to be able to carry on as before. On top of this im still struggling to claim anything from dla and if we dont get anything soon it will mean my husbadn will ahve to work saurdays too wich just makes it harder for him too.
On the DLA front are you filling in the forms yourself or do you have help? Most local authorities have a welfare rights officer or CAB can help too and in most cases get better results with claims than doing them ourselves.

The benefits agency seem to say "no" for first and second claims, then look further into it if you persist for a third attempt. Keeps them in work I suppose, but how many thousands get the "sorry you don`t qualify" letter and give up? Please keep battling with them and any feedback from the carers assessment may help them decide in your favour too.

Answer every question, even though the form appears to ask the same thing ad nauseum, and use the very worst day you have ever had as your example day for them. It`s not cheating, as by the time they get the decision made that could be a normal day.

Good luck,

Take care
Meg