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Our Bunny!!!!! - Carers UK Forum

Our Bunny!!!!!

Share information, support and advice on all aspects of caring.
Our Bunny!!!!!

So now it is six years since we wrote about our situation with our Bunny. His age was then approaching 46 yrs. He is now fast approaching 53 yrs. He is now also diabetic. Thank goodness he is only type 2 and therefore we can control it with diet and tablets, which we do. He is getting older and we find that his needs are accumulating fast. We continue to be alone with our problems and over the past six years I have had both hips replaced, a second myocardial infarction which required angioplasty with three stents and a right eye cataract removal. She, my wife, has had one hip replaced and has also had a myocardial infarction with resultant angioplasty etc.
As our personal problems developed, we approached the Social Services, both voluntary and NHS locally and County, for some limited support during our hospitalisation and immediate convalescing, just to cover us whilst we were incapacitated. We got a response in the end, which was that we received a large envelope containing brochures from private firms giving their hourly rates for services, but then we were lucky because our youngest son and his wife were able to take time off work and took it in turns to help us out until we were mobile and back in the routine, even if somewhat decrepit.
Oh! Yes! Towards the end of 2011 we did get some attention from the NHS. Our Medical Centre sent a letter asking for us to bring our Bunny in for a Medical Assessment? Thinking that it was a medical review of his medication we attended to find two complete strangers, very young, who talked to us, but not to Bunny, whom they ignored. They asked many basic questions about him and then virtually dismissed us without any explanation. I wrote to the Medical Centre manager complaining that we had gone to a medical assessment and found that we were talked down to by two people, who appeared to be inexperienced and had no idea about disabled people and their needs. The response was that a senior smiley person, full of bounce and self-important efficiency, visited us at home and informed us that the reason for their department’s interest was that they had to produce a ‘Passport’ for Bunny and everyone like him, so that where ever he went and whoever he met, he could produce the ‘Passport’ and that everyone would know who he was, what he was and what were his needs. So this process went on for numerous visits and eventually we were presented with a ‘Beano’ type document outlining all the points we had discussed regarding Bunny, his needs, his likes and what upset him etc. At no time did this senior ‘jobs worth’ talk our discuss anything with our Bunny. He did, after one visit, say to us that he was worried that the person was making arrangements to take him away. So the document was compiled from our words and not Bunny’s. When we were alone and studied the document, we found that they had misspelt my wife’s name and that there were grammatical errors.
Considering that the document was for Bunny, he was left unaware of its function and purpose. In addition, the costs incurred by the people, visiting us, interviewing and the printing of the illustrated document, leaves me wondering just what these departments are there for? Certainly not to come out to support carers like us when we have a need? All anyone has to do is sit and talk to Bunny and he would tell them everything about himself, including dates and situations. My wife insisted that I let the matter drop, because we would only get more and more agitated.
Where was I on the 16th September 2006? Oh Yes! We are lonely and completely isolated in a world containing so many so called understanding societies, but now we are approaching 75 years of age and getting deeper into a state of infirmity and wondering about Bunny’s future.
Hi, thank you for your update. I too have been their with the whole operation scenerio. I put off having my hip replaced for several years because of S, and in the end friends moved in and covered S's care along with juggling their own work committments. Social care are really as much use as a chocolate teapot.

It is to your credit that Bunny is so well cared for, but what are your plans for the future? This is a question that scares so many of us with disabled sons/daughters and needs facing before we are too exhausted/decrepid to support them with such a life change.

Thanks for the update.

You have had a busy time of it and must be heartily sick of seeing hospitals.

I used to work in residential care for adults with learning disabilities and once a year they had to be trotted down to the GP so he could see they were still alive and advise DWP so their benefits could continue. Some of them only saw the doctor on the annual visit and it was pure nonsense in my opinion....waste of everyone`s time, as was the fiasco regarding Bunny`s passport.

Hope there is some expectation of support for you both soon. Bless you all.xx
Its probably a good time, at 75, to be stating clearly and firmly that in future you will be delighted to visit Bunny regularly, but that you plan to retire from providing unpaid residential care, and therefore request that a proper and adequately funded supported living package be put in place, locally to enable you to keep in touch daily. Your Social Services will of course be expecting this, but its up to you to call the shots. It wont actually cost you a penny as he is entitled to a care package in his own right. After all, what is the alternative? The longer you put it off, the more difficult it will become for all of you.

My own 'Bunny' is now 18, whilst my wife and I are approaching 60; and after reading many such similar stories as yours, and considering my sons quality of life and need to grow and develop some independent living skills, I shall not be leaving it too much longer, three or four years at most, to set in motion a supported living package involving a local housing association flat and directly employed staff: I figure it will probably be a bit of a mess at first so I would rather be around to monitor it and help provide a safety net for a few years than leave it to the last minute when I am past it and my son loses the flexibility and capacity to accept change. The sooner the better!

By the way, a wee tip: I have a strategy of refusing to sit in on meetings with my caree and social work or the GP: it encourages him to learn to self-advocate and explain his own needs, and them to treat him as a person in his own right. I then meet seperately and later to check that communication has been correct.
Sound advice Scally.xx
I would rather be around to monitor it and help provide a safety net for a few years than leave it to the last minute when I am past it
Exactly why we took the decision when we did, Scally.
could not agree more with charles and scally.

DP/Personal budgets. employ the staff that you want to look after your son. set him up in a housing association flat. does he have a friend with likewise forward thinking parents who he would like to live with. or would he prefer to live alone. do it now, whilst you are around to help his transition into independent living. please don't leave it until its a crisis situation. it will be far more traumatic for bunny. and you will feel more content that you have done all you can to give him the best possible future.
there is plenty of help out there to make this happen. a carers support centre would be able to help and advise you. the councils are well tuned into this now.
if you find it all too daunting, how about asking your younger son and his wife to look into it and help set it all up. they must be concerned about the future to.
good luck with bunny's future and keep us in touch.
My son has SLD, can't read or write, but lives happily on his own in a privately rented flat, it doesn't have to be housing association or council. The letting agent would only offer a short tenancy to start with, to see how he would manage, but they have now realised that people with learning disabilities can be ideal tenants, as they have so much support. My son has 4 hours every evening, goes to day services every day, and has 10 hours every Saturday and Sunday. When the flat above M's became vacant, the agency gave first refusal to the care providers for another of their service users, and now the MD of the letting agency has another client from the care agency as his own tenant! Housing Benefit covers all the rent apart from a couple of pounds, paid direct by the council to the letting agent, possible as my son is classed as a "vulnerable adult". He has plenty of benefits to live on, in fact his income is greater than mine. M has enjoyed gradually furnishing the flat, sorting out curtains etc. which he likes. Some of his staff have very questionable taste and don't seem to understand the concept of colour matching at all, whereas M is very colour conscious. He has some lovely Laura Ashley curtains for his two large picture windows which cost just £10 for both pairs, simply because the header tape needed some stitches - no problem for me. His Ercol dining table came from the tip, in excellent condition, and we bought his matching dining chairs from ebay for just a few pounds. He comes home alternate weekends, we usually plan something special together, and I enjoy his visits so much more. I too have some serious health problems and also care for an elderly frail mum who lives in her own home nearby. Feel free to send me a PM if you wish.
Hi Bowlingbun
That is wonderful that your son gets that level of support but it has to beg the question if it can be done for one person in one area with learning difficulties why can't it be done all over Britain and for physical disabilities too? Why can't my son get this level of support without them threatening to put him into an old folk's home?

I really don't know what the answer is. M is largely funded by the Independent Living Fund, but of course that is about to close. I feel very humbled by your posts and situation, it is so unfair, and your son needs so much more than mine. My son was in residential care for a while, that was only funded because at the time I was also caring for two parents who were terminally ill and a third was seriously disabled. The Supported Living placement was only funded because the care home closed down, and there was simply nowhere else for my son to go. By then I had been diagnosed with a potentially fatal condition and had just had major surgery, so had one of my other carees. I think that the care that is, or is not arranged, is a complete lottery, and a national disgrace.