Kick me if you've already tried this, but given there is possible respite care available for the dementia, could the GP not arrange to have this backed up on a daily basis by a health visitor, district nurse, some other agency? Would you be required to pay for this and if so, could not the siblings help financially - conscience money? I know it's a minefield. Every area seems to have its own rules and different funding.
Have you phoned the Alzheimer's help line or is that an OUCH!
Try not to let the disappointments, and they are real I know, set you back. Just as you think you've got it sorted something comes along to pee on your bonfire!
I wish I had more definite information.....................
JUST FOUND THE FOLLOWING POST OF THE WHO CARES FOR THE CARERS THREAD, POSTED BY NADA WHO I HOPE DOES NOT MIND ME COPYING IT OVER.
Be persistent - you have a right to help
I don't know if this will be of any help, but this is the final line of hte introduction to the Alzheimer's Society advice sheet entitled 'Carers - looking after yourself'. http://www.alzheimers.org.uk/Caring...fo_yourself.htm
As Norman says, the advice sheet mentions the GP and your local Alzheimer's Society branch.
But it also mentions the 'Carers and Disabled Children's Act 2000' and says:
As a carer, you are now entitled to a local authority assessment of your needs, whether or not the person you care for is being assessed. The local authority must provide any services that you are assessed as needing. Services offered by local authorities vary, but might include, for example, driving lessons, counselling services or training on how to lift properly. Local authorities can charge for services, but your income will be taken into account.
Local authorities also provide carers’ special grants, which you can use to pay for services to give you a break from caring. You might also be eligible for vouchers for short term respite breaks. These give you the flexibility to choose the time of your break and the kind of support that you need....
Chesca thanks for going to all that bother for info.
Still no bloody respite organised. Other place will only take mum with the oxygen if I go down and put it on her myself and sit with her whilst doing it, and this is respite how? Rules and regulations is the only explaination given!
CPN knew from yesterday I am desperate and decided to ring at 5pm when it is too late to get anyone, care manager is in his usual not bothered fog.
CPN says she doesn't know who would take mum with her physical needs I will hear from either her or care manager tomorrow. Considering I have never heard from the care manager in the year he has been in charge, I assume that phone call will be accompanied by a squad of flying pigs beneath a blue moon!
I just don't believe this, I am utterly exhausted and being really horrible to my poor mum. God this caring lark is just a joke. What if I dropped dead tonight or walked out of here, wouldn't some help have to appear?
Last things first. If you dropped dead tonight, I'd miss ya and Mummy Magic would be whizzed into the first available nursing home, the vultures would descend to devour any 'estate' she may have acquired and, with a bit of luck, kill one another in the scrabble. That's why you're not allowed to drop dead tonight and why you have to get some help.
Looks to me that if the care home manager is willing to take Mum, her major obstable is the physical aspect of her nursing. Now, we're back to the old pennies. Would they accept an agency nurse coming in to perform these duties on your behalf, is funding available to YOU to enable this to take place? Given this is an essential requirement of Mum's surely the GP has a duty of care.
The reason the care home won't take responsibility for other medical needs, me darlin', is because we live in a compensation culture generated by every ne'er-do-well and chancer looking for a quick buck. They're covering their OWN botty bits.
The other thing you will be repeatedly told is that the CPN's responsibility is mainly to your Mum, not to you. So give her the responsibility. Tell her that you have ARRANGED for a short break and that you trust she will ensure the necessary care package will be put in place. I would also very firmly and calmly (so, I tell lies sometimes) tell the care manager that you are not happy with your present arrangement and discuss how things could be improved. When you get the but. but. buts...say that you are going to have to INSIST that improvements are made. You have a basic human right, by definition, to a life.
Isn't it amazing that, in a country that can produce babies in test tubes, clone sheep, do weird things genetically with almost anything - as well as blow the buggery out of strangers umpteen thousands of miles away.... isn't it amazing that you, Magic, are the one person in the world who can provide the level of nursing care to Mum?
Rules and regs are always an issue. At Jan's home, I lift her by myself from her chair onto the mattresses in her 'soft' room, but there must be 2 or 3 staff to do the same thing.... health and safety.
As carers, we are the parcel in a massive Pass the Parcel game, as every agency shifts us along to someone else.
We're an anomaly - clearly of immense value, yet valued so little.
You will probably know that the first thing out of the care?manager's mouth will be that a permanent placement should be sought for Mum, but, as you have demonstrated, nobody appears to be prepared to fulfill the requirements demanded by Mum's condition. And if he knows of one such suitable place perhaps he can approach them for a week respite.
Best not to submit to emotional blackmail. The first lesson learned at the Stalinista School for Social Services is that you can offload with a bit of blackmail thereby allowing you more time to indulge your passion for elastic band missile battles back at the office.
Try not to be too screwed up. And consider this: if you think you've got problems, in spin cycle my washing machine has taken to trying to follow me to the supermarket. It has obviously become unbalanced by association to its surroundings.
have you seen the book"Who cares"?
It is information and support for the carers of confused people.
Produced by the department of health.
The telephone number that I have is:08701 555455
I hope I not telling you something that you already know but this is an excellent book.
I don't know if our society would have it?
Well I waited for the phone call today from the care manager or CPN as promised, and guess what guys, I'm still waiting!
Phoned my GP whom is always very good. She said social services should be doing stuff for me, I said yes, I arrange things and they fax papers.
Mum has been so poorly today I doubt I'd get the phone call after a few hours respite to take her home anyway, as that place that I'm trying to arrange respite in is a residential not nursing home. But it does have a coded door.
The worse thing that has happened in all this was having to get the home oxygen put in 2 months ago as this puts everyone off having mum. The thing is she rips it off all day and I spend my hours putting it on again. The respitory nurse and doc think she could go 5 days respite without it. (That's all I'm requesting)
I think that particular hospital sent her home on it just to get the bed, as everytime they sent her home she was ambulanced back in 4-7 days later, 3 times she was dashed back.
Sick and disgusted with the bloody social services, if I win the lottery tonight mum's getting several full time nurses to look after her here, preferably ones that look like George Clooney.
Has anyone ever heard of a CPN whom doesn't know of anyone whom could offer respite for mum's needs? Is it not her job to know? I am supposed to go out and find places suitable whilst looking after a woman with A/D, rheumatoid arthritis and a chronic lung disease, whilst enduring acute panic attacks and agoraphobia myself. Maybe I could juggle some balls in the air too and stick a brush up my a**e and sweep the pavements as I search? Would anyone like some ironing done while I'm at it or maybe I could mind your kids, because after all I am a carer, therefore I am SUPERHUMAN!!!!!
I think we carers should dispense with earthly names and rename ourselves.
Obviously I am Magic Mac, Brucie is Braveheart, Jude is Eskimo Nell (sorry Jude I couldn't resist that one after the freezer story!) Chesca can be Portia as she's into all that clever jargon, and Norm, he's Merlin, as he's obviously working miracles at home looking after his piglet.
Any other suggestions on nicknames for the rest of the superhuman bunch? Let's cheer ourselves up a bit.
I opened your post in please, please let it be good news, don't-let-me-look mode. I can't believe it, but I shouldn't be surprised. You must have the sloppiest support network this side of the equator. It was very good of your GP to reaffirm what we already know: THE BLOODY SOCIAL SERVICES SHOULD BE DOING SOMETHING TO HELP. SHE SHOULD BE TELLING THEM ON YOUR BEHALF. Sorry about that, I'm just a little angry on your behalf.
I'm sure you must have grounds to make a formal complaint to a higher authority in the social services, but this involves taking note of times, dates and things said and you have to have enough energy, something not in abundance at Magic Towers just now. However, I know you will drop your juggling balls in shock, but if you feel the need for assistance, I draft a magnificent letter of complaint, even if I do say so myself!
As the hospital have provided the oxygen and its accoutrements couldn't they send a district nurse in? I mention this only because when I had to take mum to A&E after an accident at her home, the doctor who stitched her wound wanted her to go back for monitoring. When I expressed reluctance to put her through the journey he kindly, and he was very kind, arranged that a district nurse would visit to change the dressing, etc. However, because there are qualified nursing staff on site (I'm still looking for them), the rules are that local health authority could not provide district nurse - too thin on the ground. So the GP came out instead! Just another thought. I know none of this is of any consolation in your present predicament, but keep thinking George Clooney thoughts.....................
...........and if you're after juggling some balls you should look no further than your kitchen knife drawer next time you see the care manager.
Just now, advised I was henceforth to be known as Portia, JJ suggested that it was a very fine car indeed, although a little vulgar, rounded looking and heavy on the bumpers and thus very apt.
..................THAT'S ONE HELL OF A FREEZER STORY!
I've had to print it off and stick it to the front of mine. I've never laughed so much since the last time!
Are you sure he wasn't a bigamist? By the time I married him he'd moved on to firearms, shopping trolley gymnastics, and psychological games for which he was ill-equipped given they require a brain in the first place. But enough of that old tut!
Just a thought, Scarlett, but you haven't by any chance been testing Norman's recipe for unspeakable acts, as described in the 'you just have to froth' thread posted by Bruce.
The freezer story is sad but true. Now you know why I'm always whingeing big time when the temperature drops below 20C. Makes me nervous....!
Could it be the same bloke I wonder? Sounds like the clinically brain dead thug I once had the great good fortune to cast off. Apparently he ended up in jail after several bouts of GBH and wife bashing. Nice type ay? Recent news is that he is operating a window cleaning business in Woking. Obviously learnt a few more skills at HM's pleasure and has graduated to being a peeping Tom and petty thief as well. Good riddance, say I.
Dear Admirable of the Fleet Birdseye and Ms Scarlett
Given the nature of my coping mechanisms i.e. to turn everything into a joke when I'm sufficiently traumaxed (or as my father would tell it, A COMPLETE AND UTTER INCAPABILITY OF TAKING ANYTHING SERIOUSLY!!!! - you try it when you've a gun pointed at your temple, Indiana), may as well go out with a bang! Anyways, 'IS that a gun in your pocket or have you remained sober long enough to be PLEASED to see me?' did not go down too well and in an effort to drive his message home - it must have been coded because the Enigma team are still working on it - he dragged me through a glass door out onto the street, but not before he had sufficiently kicked through a starting point of shards. Well, of course, alerted to firearms in the marital home the local gendarmerie descended in a scene straight out of Miami Vice, dodging round corners guns at the ready, first one there and then two either side of what used to be the front door, posed and ready and in they went......and out came OT (the Other Thing as thereinafter referred to)........... like a pussy cat!!!
We were living in the Netherlands at this time, but before the Dutch are maligned, HE was English... but only in the swamp sense.
I think the starting point had been several nights previous when we had attended a fantastic music festival in the city centre, and as usual he had imbibed a toot or 19, leaving our daughter (9 at the time) and I to walk home, quite some miles, at two in the morning, singing in the rain. There wasn't a taxi to be found, naturally. He had no house key on him so you will understand my intrigue when I found him already IN the house, but battered and bruised - I needed to know how he accomplished this feat, not from any level of spousal concern, you understand; I just needed the name of the assumed assailant because I had money for him, lots.
Nobody in the village watched telly anymore, they just tuned into events down the road!
It transpired that he had entered through an open second floor window which looked onto a flat roof. However, in order to mount said roof he required some leverage. For
this particular maneouvre he disappeared into the dark, according to our mesmerised viewers, and after some time reappeared with a supermarket trolley into which he doggedly tried to sit and raise himself to his feet.......we lived on a hill, slight incline but nevertheless sufficient to impel him forth in the manner of a circus acrobat atop a galloping stallion, his only shortcoming on this occasion being his balance - akin to that of a weeble.
Suffice to say as I left aboard the good ship, I stood for'ard as figurehead and vowed in the manner of a heroine that never again would I be afraid.....and then Mum went into a BUPA nursing home.....................!