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Utterly knackered. Advice needed. Please. - Carers UK Forum

Utterly knackered. Advice needed. Please.

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Hello.

I've been caring for my 74-year-old mother since last July, when she suffered a UTI, dedlirium and was diagnosed as having cognitive impairment/vascular dementia (her docs still won't explain what the difference is between the two).

Her memory is exceptionally good most of the time, but she has very erratic emotions and worries constantly. She is becoming very dependent on me, to the extent that she asks me what she can have for dinner and if it's alright for her to go to bed.

I'm 100% committed to looking after her, but I feel absolutely worn out and exasperated by the lack of any effective help. At the moment a care assistant comes out once a week to take mum out for 2 hours whilst I am at work. However I've been told that this will stop in a few weeks and the onlyt option is daycare when a place beecomes available. Mum has agreed to try daycare but she isn't keen on it. She also doesn't want a homehelp.

I asked mum's nurse if it would be possible for someone to pop round for an hour some afternoons to give her company and check that she is ok, but I was told that the only people available were home helps and that they would only pop in to bathe or feed mum or to help with household tasks. I explained that mum doesn't need that type of help. I do most of the housework and mum manages to bathe and dress herself and can even cook a bit. I don't want someone to come in to do this because |I think it's important that mum keeps as much independence as possible . All she needs is a bit of day-to-day emotional support when I can't be with her. This seems to be too much to ask though!!!

I've already had to reduce my working hours to be around more, but I am still working 4 days a week and I feel so guilty when I am at work because I know mum is all alone. She hardly gets out of the house. At the moment all I do is work and care. My needs are completely neglected. I feel as if I'm trying to hold on to my job but I can't do it properly because I'm always either caring or feeling guilty because I am not caring. I think I'll have to quit my job, although I really don't want to.

Surely mum and I are entitled to more than two hours help every week? Every time I ask for more than that I am told that the only other alternative is residential care. I almost feel that I am being blackmailed into doing everything myself.

Does anyone have any advice on where to go to for help? What help is available?
Two things come immediately to mind, one is an Individual Budget which can be used to access a wider range of services/activities than a directly commissioned care package, in your situation I would ask your mother's social worker to have your mother assessed for one of these, it will mean you managing the Direct Payments if your mother cannot or does not wish to but it would give you the flexibility and sort of services you seem to need.

The other is contacting your local Crossroads which provides a sitting service for carers to enable them to have some sort of a life, each local Crossroads seems to operate differently in terms of charging but all are there to provide respite for the carer, there is often a long waiting list for the Crossroads service so I would contact them as soon as possible.

And then the obvious question, have you had a carers assessment? If not ask your local social services department for one, you may be able to get the sitting service via this.
Hello Jim T,

I bet you are "Utterly knackered" most people who care for a loved one with dementia ARE.
There is a lot of information out there's but little actual support on the ground from services 'that is unless you are willing to pay privately' for care.

I would suggest you read the following links 'if you can find the time' so you can become informed of your rights as a carer and caring for someone with dementia.

Your rights as a carer
http://www.nhs.uk/CarersDirect/guide/Pa ... ghome.aspx

Urinary tract infection
http://www.nhs.uk/conditions/Urinary-tr ... ction.aspx

Dementia
http://www.nhs.uk/Search/Pages/Results. ... q=Dementia

Alzheimer’s Society
http://www.alzheimers.org.uk/site/index.php


Good luck!
Jim, even if you have had a Carer's Assessment, ask for it to be done again/updated. Tell them what you have told us, and push the point that you will not be able to continue caring at this level. They would much prefer organising 'preventive' measures than having to scurry around sorting out a crisis - and you do not want to get to crisis point at all. You should not be forced into giving up your job.

As you see (<- ) I am in Wiltshire, where they realised a long time ago that spending a little money now looking after Carers, saves bigger spending in the future. They don't have the funds to do everything they would like, but I get Direct Payments which I use for someone to get 2 main meals midday and 2 afternoon cups of tea, plus some help in the house. I use a mix of agency and directly employed people. Dad is physically disabled and diabetic, slightly deaf and not very security aware, so although he does not have dementia, I do not like him left in the house alone for too long. I do not go out to work.