Is Anybody There at Home Care?

Another phone call to the HC office this morning. The poor lady who answered the phone didn't know what the local STD code was nor the names of others working in the office. She has promised to call back. Knock me down with an F if she does.

It has taken us about 3 years to have a social worker assigned to Mum's case/care package. Last Christmas, the social worker recommended that we consider a Direct Payments scheme. It was quite a challenge to try and find the people who would work together frankly for a pittance. I had already started to look for someone three years' ago and just got lucky this year. We of course, must contribute. I have long since shunted the issue of debt to the back of my mind but how to contribute £ 200/week when I am doing the caring and have no income is a grand mystere - especially since I had been the breadwinner and the family are all living off meagre savings and handouts from the legacy of H2's father. Not a bean from mine. For all that I loved my father, his priorities were completely squiffed. And don't even mention the 'P' (as in pensions) word! At least, I don't have the worry of my portfolio, the plummeting of my shares is an insouciance...

Having got the team together - without help from Home Care - we are now derailed because the Christmas case officer has been reassigned to another department. At first, she didn't answer my email so I emailed again blaming gremlins for its non-delivery. No answer. But as a carer, you get quite used to the 'no answer' routine. When I followed up with a phone call, it was then that I found out that she had been reassigned. She has at least phoned the local office to request another case officer for us. That's about a month after the team was finalised, and we are no further forward. I employ these people through my taxes! No-one is accountable. No-one will ever be accountable, because most of their clients oblige them by dying. Which Coroner's Court will find that my mother, and others like her, died as a result of indecision and turpitude on the part of the Powers That Be? There are a few, though, (notably the redoubtable Mary C) who do what they can, emailing colleagues to request that Mum's case is fast-tracked.

For all the turgid, uselessness of the HC system, Mum's illness has brought forth people without whom I simply could not manage: Mum's private carer and my Friday-girl, Mary M, Gill, our CPN, Dr L, the GP and the Community Care officer Mary C are all superb. Honorary Sunbeams, God bless them.

The Mystery of the Chinese Dragon

"Xhow awoke. Shooting stars exploded in the blackness. Xhow saw the Xhong-Xhang-Xhing. The magical dragon illumined green. His body followed the Great Wall. Then the Xhong-Xhaing-Xhing eyed Xhow. Xhow was enchanted. He climbed on the dragon's back. The dragon breathed amber flames and took off.
Xhow was never seen again....."

Aaaah. Well done my little one.

Rock & rollers

I'm sitting here with a full head of rollers ready for a cocktail party given by the local NHS board to those of us who "contribute". The joiner and handyman are trying hard not to laugh though they have long since passed the green face pack test. I think my contribution was the lecture that I gave to psycho students at the end of their year, though I'm not sure. Anyway, since networking is absolutely the thing in today's youniverse, I'm tubed up and ready to go.

Only thing is, it's tomorrow night.
Bummer.

Ring a Ring a Roses

I found out recently that Ring a Ring a Roses was not about the plague after all. I was quite disappointed when I discovered that, I thought it was one of those quirky things to know. A little insight to pass on to the kids, when they say to you: "Mummy, how do you know these things?!"

Mum's rings are falling off, because her fingers are shrinking with the weight loss. I think probably malnutrition does for most dementia people more than anything else. Microwave meals don't taste of anything and there is no anticipation before eating. No lovely smells to prompt the appetite. A few of the better carers left our nearest nursing home because they were too distressed by the processed chicken approach to the elderly. Up, dress, wheel them out, wheel them back, undress and into bed. The portions, apparently (or is that, allegedly?) would not keep a sparrow alive. What is the potato profit margin these days?

After I had to take Mum to the dental practice for a wholesale extraction of teeth - she doesn't like brushing either - I have resorted to the mush and mash diet. 101 ways to use avocado, honey and potatoes. But no matter how many notices I post on the notice board, poor Mum still gets served up crisps, cheese cubes and carrot sticks. Sore mouth, can't chew, needs soft food. Duh. "Put out crisps and nibbles but Laura not hungry tonight.."

Thank goodness for the Home Carers who care. The box-tickers - Offered food & drink: tick. Prompted tabs: tick. (Since when did the GP advise: "Tablets to be prompted 4x daily" on a prescription?) Offered toileting: tick (Admittedly,a little more tricky this one!) Three weeks of Home Care care by the book would bring Mum and the other "clients" one step closer to the morgue. The best carers are the ones who break the rules. There's not a lot of wiggle room for an 84-year old, you see.

The tablets thing is maddening. Of course there have to be protocols to protect clients from abuse and carers from accusatory clients (and their families). US-style litigation has a lot to answer for. But which is better? To have a dotty old duck take no tablets for 3 days, then find a load of white pills by the armchair and take the lot on the fourth day: or to have a reasonably competent qualified carer squish tablets in the marmelade, or feed them on a spoon - provided it has been cleared by the GP or the relative/friend who holds PoA/Welfare Guardianship?

I have battled this issue for 3 years. The local Home Care branch says its hands are tied. So I called the Head Honcho, two-three? years ago. Who nodded sympathetically and said that he would talk to his counterpart in the NHS (Never the twain shall meet). Then he would be back in touch. Never heard a sausage. Not a squeak. And in case I sound far too bellicose, I think I'm just trying to fulfill my welfare guardian role to the best of my limited ability. As I understand it, the matter is in the hands of the lawyers who have come up with the peachy idea that every single tablet for every single dotty duck has to be individually wrapped. Oh joy. How exactly are the carers (especially those who don't drive) going to carry that around?

After Mum's engagement ring. Daddy never did buy her anything else much. She got a lovely set of pans though.

So to continue...

I resolved in the beginning not to make this a long dreary account of visits to the doctor and dealings with Home Care. Who wants to read about the price of incontinence pads?! (But while I'm on the subject, can anyone tell me why those who have to use them, can't get them on prescription?! Pads are a no-no. Mum doesn't understand things like "not to be flushed" and she's highly unlikely to rip her pants off. I might as well ask the question here, because emails and phone calls to the "Incontinence Service" go completely unheeded. Ditto Blue Badge parking. If I leave Mum outside a shop and go off to park, the chances are I shan't find her again but the BB scheme is about as deaf as the rest of the "support services"! And while I'm on a good old rant - I do actually wonder if anyone bothers to question the number of days off sick in the Upper Echelons of Home Care.

Nurse Plus arrived last night, 15 minutes late for the nth time in a row. Most are kindly, and it's true that by the evening Mum is not very co-operative. And no, she doesn't want to sign their work sheet, which is the first thing they wave under her nose, to say that they have stayed their full half hour. Good for her. Even in the depths of dottiness, she realises that they do very little other than close the windows and the perfunctory question: do you want a drink, something to eat, take your tablet? Few dementia "clients" in the advanced state of dementia understand any of this. Might as well ask if they want to fly to the moon. Most remember at least to switch the lights on if they leave Mum sitting there before it falls dark. Some don't. So whose "lights" are switched off exactly?!

How time flies...

I can't believe that it is two years since I started (and lapsed) from writing this blog...How appropriate, that I called it The Dandelion Clock then! Thankfully, our seeds are still clinging and we haven't yet puffed our last toll of the bell.



For months now, I have resolved to write a letter to The Powers that Be, if only I could find out who they are. Tony B has gone, Gordon B is in his place and Home Care continues its merry way. Since I left off writing, I have joined two dementia action groups in attempt to do my very small bit to help improve the lot of those who follow on. Dementia is beginning to look like the Giant Squid of the NHS. Everyone knows it is there, but no-one wants to see it, or deal with it. It just lurks in the murky depths, waiting to ensnare the unwary!



We're one of the lucky ones. I can speak out for Mum and fight her corner but heaven knows, it's hard work. The boys, now two years older, are still wonderful and helpful but there is boiling resentment on behalf of their father who feels that we (I) must do everything and my brother nothing. Situation normal, then! Every family I have heard about, is in the same boat. One carer and the rest who advise from the sidelines or simply turn away. "Too busy". "Got our own lives to lead" (Yes, and...?) "Done my bit". One way or another, the sad fact is that Mum has been abandoned (?) - no, too dramatic a word - let down, by the most important men in her life. Her father put her in an orphanage when her mother died; my father divorced her when she was sixty; her brother neither writes nor calls because she doesn't know one end of the telephone from another, and my brother is too stressed with his own life. Who does Mum talk about all the time? My father, her brother and her son.

Unrequited love takes more than one form. I wonder - is this the price that all Eves must pay for having listened to that sweet-talking snake?!