Losing the will...!!!!

[kkerr]

Hello
Havent posted for a while, I am a 43 year old caring for my mother, who is 73 in my own home. I work 60+ hours a week (thank you NHS!) and am struggling. I have had a CONSTANT battle with SW re direct payments for carers, finally sorted out 12 months later after almost losing my flat due to having to pay for carers rather than the mortgage! I was also told at the time of the assessment that Mum would be eligible for 6 weeks/year of respite care. I NEED one of those weeks in October - not only for some time away, but I have a work commitment in another location. I have been trying, since August to arrange this but the final outcome - there are NO council funded care homes in ALL of Edinburgh that have any respite care places available.... ever, it seems. So only option, try a new, private care home that has recently opened as they are not at full capacity yet - and yes, they can take Mum. Visited it last weekend, seems ok - much like a hotel which may appeal to Mom. However, it is TOO expensive according to her SW. They will contribute a maximum amount towards it , which leaves me almost 700 pounds to pay. Plus the cost of dog kennels, etc. All in all, for me to get away for a week it will cost me close to 900 pounds and that is before I factor in the actual cost of going away!!! In addition, I was informed that the council may come back, "at a later date" and ask for MORE money towards the cost ot the respite week. This amount was undefined and the date was unspecified. Great.

With this sort of arrangement, I will NEVER get to use 6 weeks of respite care, I doubt I will even get 2 - as I simply cannot afford it. Almost shouted this at her SW who used an evasion tactic an simply changed the topic. I cannot go through another 4, 5, + years of this with less than 2 weeks break/year. It is affecting my personal life, my professional life and my health now. I have no siblings and am still single (which will NEVER change given current circumstances - how can I date when all I do is eat, sleep, work and then do dementia care?!). I am usually quite positive and try to find the humour in this situation and little tricks to make life easier. But I have really had it.

Sorry for the rant - anyone had similar problems getting respite care - any solutions?

 

[ITBookworm]

I makes me so mad when the local councils, in effect, make things more expensive for themselves never mind how it affects the carers!

I am not sure how feasible this would be (I can't see it can make things much worse for you ) but can you go to the SW and say that, due to their incompetence, you are now at breaking point and actually you would be looking at full time care for Mum.

Unless Mum would be self-funding in a care home that is going to cost the council a whole lot more than getting their act together about respite placements.

Another option would be to go to your doctor and ask for their support with social services on the basis that the stress and hassle is affecting YOU never mind your ability to care for your Mum.

I do so hope you can get things sorted a bit better.

 

[WirelessPaul]

I'm very sorry to hear about your troubles and the situation you find yourself in. I just do not know where to suggest you seek other help. it is this sort of treatment and situation that I feel for.

Carers it seems to me are just a neglected group, neglected because the REAL cost without them is so unbelievably high; thus no-one wants to really get involved when it comes to actually offering any real and useful assistance.

How can we change this situation, how can we up the game of Carers support?
WPaul

 

[Nebiroth]

I would be tempted to tell the social worker that you are going to be unavailable in between x and y dates, and that you leave making arrangements for appropriate care in their capable hands as the law requires.

Remember, as far as I am aware, you are under no obligation to provide any care whatsover - no one can be made responsible for someone else's care (excluding a dependent child). Being a family member is irrelevent.

Perhaps you could ask what social services would do if you were suddenly taken ill and had to go into hospital for a week. I suspect their response would be they would have to make arrangements to provide care, since they have a legal duty to do so.

I think that respite tends to fall between two stools, in that it is seen as a service for the carer as much as it is for the caree, so they try to get the carer to help fund it. But care funding boils down to: the person getting the care has enough assets to be self-funding, or they don't. If they don;t, then the local authority pays.

At the end of the day, if you have a breakdown and aren't able to do any caring, it will be ultimately more expensive for them because they'll have to fill in the gap. Possibly on a permanent basis. The alternative to you is either carers to your mum's home or placement in a care home and unless she is a self funder that is going to cost them a lot more.

I'd be making it clear that without respite there will be a "carer breakdown" (the official wording) leaving them with a "vulberable adult" on their hands because you will simply be unavailable.

If you need a break because your job requires it then it is unavoidable. You are simply unavailable at that time - they will have to deal with the problem.