The Big Day

Thankfully, I have not gone mad. Dear Diary, must remember to be a little more cheerful in future. No-one likes a whinger. The Big Day cometh. La Grande Pancake is due to arrive this evening, neither her flat nor room is ready and I am posting to the blog instead of scrubbing. Naughty moi. We are back from Spain (of course), we have "done" two Germans, sorted out Mum, a dead rat on the back lawn and held the first meeting re Direct Payments and my presentation to the new Community Support Workers. That was just in the first week, so must be firing on a few cylinders.



Spain was wonderful. R looked beautiful - more than beautiful, in oyster silk with her high mantilla of bone and diamonds draped with old lace. She carried an exquisite posy of lily of the valley. Her family were all so welcoming and so kind. The service in the cathedral was moving though the priest was a little unbending, especially since poor B was grappling with his Spanish, very manfully, I thought as a non-native speaker. The ceremony was blessed by the Pope in a letter to R & B, leaving R in tears. The girls of course, were curious as kittens about our boys wearing "skirts" and were desperate to talk to them though language was a bit of a barrier.

Back home, just in time to welcome two charming German boys on a choral exchange. That was a bit of a challenge, trying to remember how to speak but we had a good time together. The boys being so much younger, were a little shy at first, but were fine by the last night!



Back to scrubbing. I do wonder how this venture in living together with LGP will go. Will our first battle be, how to persuade her kindly that it is not on, to drive our children to school - or anybody's children for that matter? The crude fact remains that at 85 ish, there is a good chance that something will happen, and I would rather my children weren't in the car if it does. Add to that, dementia - and it's a definite no-no.

Stressed - qui moi?

Here we are out in Spain and Santiago is lovely. My hat has arrived in a rather strange shape for tomorrrow's wedding. There are bangs outside which are either fireworks or a full blown rebellion. We are all absolutely exhausted. H2 arrived back at 5am the morning we left for Spain having packed up the contents of the Grand Pancake's flat. LGP is currently abroad and requesting a ticket home - so we have to unpack some 90+ boxes in the next 2-3 days of our return. Meantime, none of the carers who had agreed to cover for our regular Honorary Sunbeam showed up - one called the day before to say that she would have to cancel - the other about an hour before they were due to arrive. For the first time in ages, I reached for the Diazepam. I can't cope with this. I have to pack for Spain,clean the GP's apartment and finish the decorating, collect the poor children, feed them, do homework with them, and get them to bed and sort out Mum at the same time. I feel I am beginning to go mad.

Operator, operator...

Amazingly, the lady from HC did phone back. But then she said she couldn't tell me anything so she would phone back again, even if she couldn't tell me anything then either. A sort of progress report of no progress. OK then. But today's the day, and she hasn't called back even to say that there's no progress. I expect she's been transferred.....Beam me up, Scottie. It would be a relief.

Mum bless her cotton socks is soldiering on woman-fully. I have booked to attend the conference "Have Your Say" for carers. Great idea and lots of carers will hold forth (just like me) but the trouble is, that TPTB are all out to lunch. The lady (another one) told me to call my local carers' centre run by The Princess Royal Trust. They would definitely help and also, to let her know how I got on. Sounded great. So I did. Guess what? Someone would me call back. (No, they didn't since you're asking...!).

And then, huge irritation at the weekend when some local yob yanked off one of the door lights outside and smashed it up. One of our kind neighbours brought it back, having retrieved it from a bin outside the chemist's - but I doubt it can be repaired. H was rude, so I told him to go and apologise. It wasn't her fault that it was mangled.

Off to Spain tomorrow. I had promised to attend about 4 years ago, but circumstances have changed and we can't really afford it. Cost of care for Mum will be £ 500 but at least she is someone who is another Honorary Sunbeam.

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?!

Sex (Not) in the City

Escape to the city for a girly few days with long lost and long found schoolfriends. We might as well be bound to each other with pirate promises of blood and spit for the secrets that are spilled and not told. It is very liberating to be with people who know you and love you from first spot to first hot flush. From Clearosil to Kiesel Pro. Boys to bladder control. How bad is it, exactly, when you sneeze and by the way, does anyone use sex toys? Partners who won't hold hands but who care deeply; partners who are rampant but can't show affection; partners who won't work, haven't worked (but who still profess to care); partners who get drunk and with the baggage of old grievances. Lovers who are impossible or too remote and those who are expedient. The men whom my aunt calls "The Mantlepiece Men". Loyalties that are threadbare but still there. And our own never-to-be-broken bonds.
I owe you all so much.

The Sun

The sun is a ruby star in the sapphire sky
It is a flaming ball on the bright blue sea
It is an orange baby in a big blue tummy
It is a yellow skeleton in a cold blue grave
It is the smile of my mummy in the morning

SSB writing about the sun.
Partisan, moi?!

LGP

H2 calls and all is not well with LGP at all. She is worse than we thought - happy and pleasant one minute - cantankerous and rude the next. Her cousin thinks that she should have someone living with her until we can complete the house extension - a young companion, perhaps someone who wants to learn English. But without living on the doorstep, the risk is also great. We might not have much choice. How quickly these seeds are flying from the dandelion clock.

Lakshmi Mittal, steel tycoon, has come to the rescue of The Big Easy. Mittal tops the list of UK billionaires but like Bill Gates and Warren Buffett, he sets a fine example of philanthropy. Well done, Mr Mittal. It's heartwarming for those of us who are grappling with the minutiae of everyday issues.

Who will come to the rescue of the half million homeless in Pakistan, I wonder?

Departure Lounge

Back again and no time for jet lag. The ironing, like Topsy, has growed and growed and is clawing its crumpled way to the ceiling. Mum looks tired and is still in the same clothes that I left her in a week ago. But her son - he who causes the sun to dim whene'er he sits - has taken her out to lunch. She doesn't understand why he leaves and H2, as usual, picks up the pieces in my absence.

Now H2 has flown like a large angel of mercy to collect LGP and escort her home. Up at 4.30 am to catch the flight. Later, there is a panicky call to our house: LGP is already awaiting H2's arrival but doesn't know where he is. This is the exact same flight that she took a couple of weeks ago, but she has forgotten when it leaves, much less what time it arrives.

My cousin calls and just has time to ask if this is a convenient time for a chat, when Mum picks up the phone downstairs and presses a secret code of numbers to obliterate the landline. All attempts to return the call are thwarted: my cousin is ex-directory; I no longer have her mobile number since three generations of mobile later, the transfer of all numbers from phone to SIM and back again are awry. So I call my aunt and leave one of those rambling messages.

Cook supper, wash up, dry up before Mum springs into action with the tea-towel to dry the dirty plates. Run bath, bath children and leave them on my bed watching TV. Run Mum home, change into pyjamas, make tea, heat pad, tuck in bed. Dash back. Don't they charge you for this? No, Saturday night at around 8.30pm is not a great time to sit and chat.

There is no song about ironing. That is because ironing, however you dress it, is unremittingly and back-achingly dull. Still, it has to be done, and an hour and a half later, I am rewarded with three huge baskets and a sense of virtuousness - and an aching back.

M e-mails to ask whether I have broached the S subject with the boys yet. No! I write back in a panic that I have done nothing and isn't it a little early? M, who is blessed with great commonsense and wonderful humour, agrees.

That sort of thing, I tell her, came with Mrs KumaraSwami's lecture on "pubitty" - and a particularly lovely illustration of a neatly squared off penis with my ruler.

Rain In The City & Ronnie O'Sullivan

The Big Apple is more like The Big Puddle. Rain is lashing down. The city is humid and full of the drip of umbrellas.

On the flight over, I read through Alan Bennett's "Candlewick Way of Death", a detached but not so detached account of his mother's slow slide into dementia and death. Evidently AB's mother was in a kindly nursing home in Weston-on-Sea, but how true the slow starvation by default; the ill-matched hand-on clothes and the stifling still air. And how sad the bodies that are turned away from the curl of the sea - the bodies, who once had their own names (Lilian, Mr Bennett, I took note.). Who once sat happily on every sands-by-the-sea, with the rug and the windbreak and the thermos flask and a round of sandwiches.

Mum is particularly taken with a badge of one of her Mother's Day cards that I sent her years ago. "World's Best Mum". It's fluffy and pink with a flashing light - and she wears it as proudly as she wore my grandmother's amethyst brooch.

A little known fact. H2 tells me that Mum has played in a snooker match against Ronnie O'Sullivan. Apparently Mum caught the bus to Sheffield and The Crucible. What is not clear, is whether her debut as a professional snooker player was before or after she went to tea with David Beckham at Manchester United. The SSBs are agog - not sure whether to believe Grandma or not.

Lovely meal last night with friends. We were evidently noisy though because guests at another table sent a stuffy little note saying that they were "trying to converse". I know it's annoying (and rude) when gales of laughter from another table keep sweeping the room - but it's such a luxury to be able to be off duty. (We might have been a convention of Tourette's sufferers. )

Not a single cab to be had so we rickshaw back in the deluge. My trousers are so wet, it looks like I am wearing sprayed on clothes.

The non-PC PC

Posted the forged card this afternoon, full of chatty gardening news and cricket. Let's hope the postmark blurs and that I am not struck by a thunderbolt. This is not psychiatrically PC at all. On his first visit, the "specialist" told Mum that she had dementia - the very thing that would scare her witless. Well, blessed be the departed wits that she doesn't remember.

Dr P was full of helpful advice. Why don't we keep a diary of appointments, daily events as an aide-memoire? We do actually, have done for years now. Labelling the drawers and light switches is another useful little tip. Done that too. Leaving little notes sometimes helps. (But it doesn't when the little notes get put away in drawers (sorry, labelled drawers) and forgotten. You have to socialise more. "Suppose I don't want to?" Mum said, smelling a rat. "We'll make you", smiled Dr P. Mum playing bingo or singing Siegfried Line songs? I don't think so. We've tried the Day Centre but as only a recent import to this area, her memories and experiences are completely different from everyone else. She might as well have green wobbly things on her head.

I asked about the treatment of dementia in Japan and China where ageing populations attract more research. Beijing University is conducting drug trials into a new drug that aids dementia patients, both Alzheimer's and vascular. Dr P hasn't heard and looks like he doesn't want to. Probably had enough of amateur Internet aided research.

I think non PC will do us fine.

Eric The Red

I actually managed to remember that it was Jewish New Year this weekend and since I have one or two good friends who are Jewish I thought I would email good wishes to them before being steamrollered by weekend chores, including, no doubt, the construct of a Viking longboat, using C8th Norse tools and C21st Ikea instructions...

Tra la la la. How prophetic! That was exactly SSB's assignment. Thanks to Blue Peter, what I can't do with a toilet roll tube, isn't worth knowing. H2 who invented the meaning of competition, set forth in the garden slaying conifers for hollowing out before retreating to consider subaqua elastic band turbo drive - in case there was a "Float my Boat" race as well. Covert enquiries showed that one child's longboat was a hollowed-out watermelon. Gleeful thought: no competition there, then. But full marks for nonchalance - until I saw the rune-encrusted, stripy sailed effort this morning and realised the subterfuge...Ours wasn't bad at all. I insisted on the oars and oar holders despite the fact that my sprayed hanger and two paperclips had gone missing. Other parents admit that they daren't throw anything out in case we are called upon to build the Hanging Gardens of Babylon. Dangerous though - one man suffocated once from all the newspapers and cardboard cartons that stuffed all the rooms in his house.

Call from la Grande Pancake. Surprising since she rarely calls from abroad, and even rarelier, answers her phone. But she has forgotten to bring a present for someone and needs H2 to get one to save face. Bet she'll want to come and visit when she gets back - but the room is stuffed full - not newspapers this time, but all the furniture from the sitting room while we try to sort that for Christmas.

Christmas - horrors. The best one we ever had was when we were abroad. Still I am a lot better now - my paranoia about Christmas only starts around October as oppose to June as it did before.

Mum asked me this weekend if I might ever have children. "I do Mum", I said, pointing to the SSBs in a photo on the wall. "Are those yours?" she asked. "You never said". No, I never said. But you play with them every weekend. She wonders when Daddy will be coming back home. "A lot of the girls are after him, you know. Have you heard from him lately?" "Not lately Mum. I expect he'll be up when he's finished what he's doing". Daddy will never be back again - but we can't tell her. Her heart broke once when he left and that was enough. There is no point inflicting this final departure. My forgery skills must be put to work again.

H2 is wearing my Chanel glasses and looks quite sharp. SSBs say they look girly. I thought more Yves St Laurent myself. I can see, though that H2 is wavering. We are at the corduroy crossroads - trying to persuade him that casual shirts are better than overly tight washed out T-shirts. As Howie says, "They just don't get it!"

Spontaneous combustion uncovered

Apparently SB was told last week that if he continues to progress as he has, he might just be able to swim for his country. Downside is that it is butterfly. Bummer. Now we have to find something that SSB can do especially well and I'm not sure that dancing the tango with his mother counts.

Daisies are our silver
Buttercups our gold
This is all the treasure we can have or hold.

Raindrops are our diamonds
And the morning dew

I wonder if anyone else remembers that.

My stepmother has apparently sold the house and now wonders where she might move to. She is to rent one of the houses that have been refurbished by her daughter. Odd. Not sure I would charge my mother rent.

Also odd: an Australian newspaper yesterday reported that a man had set fire to a building with his clothes! The build of static between his jacket and his trousers was sufficient to scorch the carpet. The poor man had some 40,000 volts rampaging about his body. A real case, of "Liar, liar, yer bum's on fire..."

Must get down to some work. Airhead.

New York & back

New York was wonderful. Blue skies and sunny - while Katrina threatens Galveston and ravages Louisiana and the levees of the Big Easy. The long wind of cars out of Texan coastal ports takes on Biblical proportions. Meanwhile I get my $2 ride on the Central Park carousel! As good a bargain as a night ride on Star Ferry in Hong Kong. Now Starbucked and topped up with Tylenol, I am back with the beat, Baggy.

First night back, and I managed to collect someone else's luggage from the airport! In how many years of travelling? How dumb can you be? I really don't want a Day-Glo suitcase but...On the bus to the hotel, I look at the case and say to the bus driver: "That's not my case"! He must have heard it a hundred times before. "Well, it's the one that you got on board with". Oh Lord. It belongs to someone in Nottingham & feels incredibly heavy. Hope it's not got her wedding dress. Fling other bags at kindly concierge, jump back on the bus to the airport - but the bird has flown. So too, have all the airline's last flights.

Corner friendly PC who offers to arrest me, but only after we retrieve my bag. PC takes pity and we dash along back corridors to sort out muddle of cases. I am reunited with mine, the airline promises to deliver to Nottingham, and all is well.

Back out again to the Hoppas and finally back to the hotel. Fly home the next day, drop bags, out again to see Mum. Thankfully, she doesn't look too dishevelled at all though she is still wearing the same clothes that I helped her dress in last week. But with bright pink night socks. They look like two enormous and oddly luminescent pink pigs.

It's wonderful to see the SBs.

Pots of gold

Two rainbows tonight. Great big, luscious arching rainbows, real as real, each with a pot of gold buried in a bale of September hay. Today the kind and endlessly patient GP signed and witnessed the confirmation of my Power of Attorney. Mum signed without the slightest hesitation - her trust is implicit, like the children. I can do no wrong. I am, and will be, her beloved daughter and her protector.

And tomorrow I have to leave for New York. Mum tries but doesn't quite understand. So I tuck her up in bed and smile back: "See you tomorrow Mum" - knowing that tomorrow will be next Sunday and it's a small lifetime for her.

The boys are full of excitement. VSB has learned a poem for next week: SB is travelling north tomorrow to play another rugby match. Big smiles. They will tell me the score when I arrive in New York. Sure? "Sure. I love you Mama." "God Bless my brother and help him score a try and God Bless all the children who don't have mummies and daddies and who don't play rugby".

My suitcase is nearly packed.

I called my stepmother last week. No answer. It's now almost a year since my father died but there will be flowers for him even though there is no grave.

Sometimes my heart is heavy.

Success

SB played in his first proper rugby match today. Great success - he managed to keep going the same way as the rest of his team for the whole match! I thought I spotted blood on his shorts when I put them to wash but it was probably Ribena. Not bad at all. .

SB's sibling struggled with his last bit of prep tonight. But we managed to end on a high note: "Horrid Henry put the cat in the washing machine but found that it shrank." "I like that", said VSB. "It's evil". Better not mention to Grandma, I said. She'll only worry which is the cat programme on her washing machine....