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Discussion in 'I care for a person with dementia' started by Ann Mac, Mar 12, 2015.
Just to bump it up!!
Thanks everyone - its slowly but surely building into a really worrying picture, isn't it?
How on earth can respite facilities be deemed 'unessential' - never mind the provision of wheelchairs!!!! It beggars belief
And the point about lack of choice leading to being forced to consider unsuitable facilities is very valid - especially for emergency care, when stress levels are high anyway
I'm slowly (very slowly, as - sods law - I currently have Mil with a chest infection and I simply haven't been able to just sit and concentrate) putting some sort of statement/letter together, trying to encapsulate the importance of respite and how the lack of availability for bookable (and some times, even emergency) respite is currently a major issue for carers.
Please keep examples and info coming in - the more we have, the louder we can shout!
Ann, I hope you feel better soon
I was going to ask the social worker about bookable respite at mum's assessment this week, but as she (mum) refused respite altogether, I'm sorry, I lost the plot
I will, I promise, look for another opportunity
Take care of yourself
Just popping in briefly, as having the day from hell here
Phone call actually received as promised from Head of Elderly Care at Social Services. By Monday, she hopes to have the approval from finances to start a pilot scheme asap for bookable respite beds, using the EMI residential sister home to the EMI unit where Mil receives day care - she openly said that in raising the issue it had more or less pushed the LA to get the situation of no bookable respite beds finally resolved for this area. I'm not jumping for joy yet, as by pilot scheme it could only be one or two beds at best, which is inadequate, and I've yet to be given a time frame for when we will actually be able to book - but its a start. She will phone me on Monday to confirm finance approval - and then we will see. I've made it clear that the issue doesn't stop here - and have suggested that if this area really do do something constructive, then perhaps they can help the issue be better publicised and perhaps they could 'lead the way' in showing that its an essential service that can be offered by LA's.
It might have kind of brought the whole message home clearly to her, because during the phone call, poor Mil, ill with a chest infection and delusional beyond belief at the moment, could probably be clearly heard crying and non-stop fretting, pestering and rambling about imaginary people and situations. Her distress was very apparent - and from the sound of it, it might have been far more eloquent and persuasive than anything I could have said.
Sorry you are having a day from hell.
Poor you, poor MIL, poor hubby when he gets in.
As you say having MIL vocal in the background, when in conversation with Head of Elderly Care in your area, was (in a horrible way) quite a bonus - your "onlooker" could have been left in little doubt of your every day life and that of your family. Lets hope that they keep this in mind.
Weekend approaches...hey ho.
- Twiddler x
Well done Ann, as you say it's still may not be the answer / enough but it's a start. I am amazed how much you have done alongside all the stress of caring that you have.
Dare I ask if anyone else has come back to you of followed up on earlier calls / conversations?
Hope the weekend is not so hell if hopefully "some" of the problem is made worse by the infection and the antibiotics start to kick in x
Freedom of information requests
hello all, I am a newbie to TP and am absolutely staggered by what I am reading about so called care in this country. Also very frightened as MIL has diagnosis of MCI (which is a joke as the assessment never focuses on her day to day capabilities) and certainly seems more like AD or VasD from our observations.
I have followed this thread and apologies if I have missed it, but has anyone put in a FOI request regarding funding, beds, usage etc? This will force the LA to put facts & figures to their assertions that measures are being put in place blah, blah, blah.
I don't know how to thank you for your commitment & determination Ann without sounding patronising, so Thank-You from the bottom of my heart will have to suffice.
The Alzheimer's Soc. can't even spell it!
I have just seen 'restbite' on the home page.
I know I am a pedant, but honestly, this sort of thing on the official home page of a major charity does make me despair.
Entitlement to Respite (Time Off)
Caring is a labour of love for my dear wife Maureen. She has vascular dementia following stroke and I do my best to attend to her needs without resentment.
A couple of weeks ago one of our carers mentioned a local arrangement where I am entitled to a weeks respite every couple on months. She indicated that this is funded by Adult Social Care. So I am on the case: progress is painful and it has been difficult to achieve a night off at the moment.
Followers of my thread: 'News from Cleethorpes' will note that authorisation for a night sit for Monday has missed the Care Agency deadline for organising their staff rotas. It's hard work to establish my entitlement to respite but it is something I just have to sort out. Maureen deserves her husband to be fit to give her the care she deserves. I will provide updates of 'progress' on this thread next week.
I don't think spelling is pedantic, it's basic.
It's poor proof reading.
I hate it, although computers these days put in what it thinks you want to write, rather than what you actually want to write. That's where restbite comes from. Interestingly my iPad has tried to convert it to nest bite !
Maybe a new thread!
I'm a grammar and spelling pedant and proud of it! Most of these mistakes are just lazy (or non-existent) proof-reading. I used to be a civil servant and was frequently annoyed by this sort of thing when documents were published without adequate checking.
Story for you: OHs 50th birthday. I bought him 2 vol. Oxford Shorter English Dictionary. Wrote inside ' to the nicest pedant I know'. Friend, sitting on floor, reading this, said ' what does pedant mean!' She was shouted down, but she was holding A to Markworthy' so I suppose she had an excuse!
That's also where my pedantry comes from - OH
I'm glad you found this thread GL
Respite for carers not included in Alzheimers Manifesto
I downloaded and read the Alzheimers Society manifesto for the election and was disappointed that there was nothing to specifically deal with the needs of carers. Did anyone else feel the same?
I wish the Alzheimer's Society was far more aggressive and forward towards the needs of both those that have AD and their Carers - they could learn from some of the Cancer Charities.
Just looked at it. Absurd from my ( our) point of view. What's the point in informing people they have dementia, if you don't support their Carers when needed?
Not saying all people with dementia must have a carer, obviously it doesn't always work out that way....but the manifesto does give me the feeling of being an optional extra!
I think the AS has a conflict of interest here, which has become apparent to me recently. Certainly, I received much more proactive help when I rang the Prostate Cancer charity about my dad's cancer, than I did when I spoke to someone at AS about his dementia. The fact is, the AS exists to help and concentrate on the sufferers. I don't think that we, the carers, really feature very highly at all in their schedules or priorities. They are busy telling the world to befriend people with dementia so they don't become isolated; we know the reality of how very 'unfriendly' moderate to late-stage dementia sufferers are. They are all for pushing photos of sweet forgetful grandparents; we know the poo-smeared, paranoid, hurtful doppelgangers who take over those once-loved bodies.
I had just wanted to check that we were not re-inventing the wheel
Yes I looked at it just to check that it was indeed necessary for us to get working on establishing bookable respite as right.
I had just hoped that someone might have mentioned it in the manifesto.
Yes, I can understand that what people are trying to do is to remove the fear around the first few stages of Alzheimers. I am convinced that the only reason my Dad is as good as he is ...and now he has no short term memory ..is because he is in a family setting. My aim is to keep him going for a long as possible in the hope that when his capacity is reduced it will coincide with a time when his body is also failing. At 82 he can walk 4 miles but within 10 minutes of leaving a care home for a weeks planned respite had forgotten that he had been there. But I need respite to enable me to do this. I don't really want to be doing the circuit of lunch clubs and memory groups and older people's art clubs - although I think I am learning really useful stuff from this for my future.
I think that's a really good point Redlou and very true too about the often grim reality over the 'TV advert' version of dementia. One of the 'unrealistic' points that always irks me is when sites like the AS and AgeConcern etc. say if you're a carer "get outside and go for a walk when things get too much" - really??? when the person you care for can't be left alone at all?
So often, as you say, the approach is all about the sufferer and their needs and as for us carers, well we haven't got dementia so we must be fine! Dementia is a diagnosis that is life changing for more than just the diagnosed person - for the spouse, daughter, son, DIL, SIL etc etc it is also a mammoth shift of all aspects of life, often for many, many years and I think a shift in perspective of the huge task undertaken day in day out by carers across the country (and the world) is well overdue.