The Dandelion Clock

Needful Things Part 1.1

2008-05-15T15:36:00.001+01:00

A clone!

Was it hubris?! Completely stalled after only one posting about NTs! I really do mean to compile a list, a proper one, about NTs - and yes, I am painfully aware that sticky labels alone Do Not Cut It. Labelling (now rather quaintly called 'signage') is not the answer to The Universe and all things but it does help.

The hiccup is nothing more than two sick children (nothing serious), visitors (lovely), sorting out respite for Mum and LGP so that we can take a break in the summer, and now my being away at what I laughingly call work. H2 is mystified. "Why go, when you don't even earn any real money?" he asks. Because it keeps my brain alive, because there is still a bit of me that is the person I was before I became the person that everyone needs me to be.

So in the interim, best wishes and large hugs to all my fellow carers because I haven't managed to keep up with your blogs either and...if you see my clone, just point her this way. Please.

(Needful Things coming shortly to a blog near you).

Needful Things: Part 1!

2008-04-29T21:25:00.005+01:00

I owe a huge debt of gratitude to the many people who have helped Mum and me as we stumble on. As time progresses, I've inevitably moved up the learning curve - but maddeningly, there is no central information service for dementia, and no directory as to who does what or even what you might be entitled in the way of help*.

Most of the time, I have operated on the premise that if you don't ask, you don't get. One day, when I have more time (laugh maniacally and collapse of stout party as Dickens would say!), I am determined to compile a directory - a sort of Filofax guide that could be personalised and updated - in the hope that it might just help others to take a few shortcuts - or afford another carer five precious minutes to come up for air. So just for starters, I thought I would try to compile a list of basic things that I have done, or found, in case it helps.. Many of them are just plain obvious but if anyone would like to contribute, please do. All suggestions are welcome!

Starter for 10. Here are Needful Things Part 1:

Early stage dementia
1. If you are trying to cope with the initial stages of dementia long distance (since that's where so many of us start), try to list as many useful phone numbers as possible before you need them eg. best friends, neighbours, GP, pharmacist, police, Community Psychiatric Nurse, locksmith, plumber, electrician, local gas board or utilities provider, local bank, solicitor (ours visited Mum in hospital when she was sectioned to draw up the initial PoA), named & tame taxi driver. If you have PoA, duplicates of appointments and documents can be sent to you. And neighbours are far more willing to help if they know that they are not going to be "lumbered" - so make sure too that they know how and where to contact you.

2. An A4 diary for public consumption that is kept in the house as a public reminder for appointments etc. is a huge help. List all the phone numbers in the front. If need be, put up a reminder of things to do before leaving the house on a pinboard - check doors, switch off oven/fire, remember keys. I also printed out "How to.." instructions for Mum for the oven, the washing machine and the tumbler which I stuck on the inside of cupboard doors. Shortly after that, we had to label the doors too so that she could remember where to put things. It took the fun out of hunting for them! but made life a lot easier. Luckily, Mum did not suffer from sticker-shock though I'm sure others might be a lot more sensitive about having labels peremptorily stuck on everything.

3. Leave a folder or box for correspondence. Or A4 envelopes, stamped and addressed to you, so that incomprehensible letters can be sent on. (Yes, I know it doesn't help when the envelope/folder is squirrelled away still working on that one...)

4. Set up the phone with single-digit dialling so that 1 = you, 2 = sister etc. Mum found it easier to remember pictures than numbers so I replaced the digits with pictures instead. It also helps to cut down on mis-dialled phone numbers etc.

5. Find out whether Tesco or Asda deliver - and if not, speak to the local supermarket/grocer to find out if they will. Or, if they will provide a "shopper" to help. In the early days, Mum would sometimes find herself in the middle of the shop and couldn't remember what she was doing or why. By the time, she got to checkout, she was already in a tizzy - and then she couldn't understand the money. Mum was discharged from hospital early and had no food - but the taxi company sent "our" driver to collect her - and because I had already been round to see them on a previous visit, he very kindly did some shopping for her and just put it on the bill which I paid. The taxi driver was brilliant - he ushered Mum on and off buses, carried her luggage for her, put on lights and heating in the house and made Mum a cup of tea. It was worth far more than the little extra that was charged. And the supermarket were more helpful that I had expected in assigning Mum a lady to help her shop. That was before Tesco home delivery - and though I offered to pay, they did it free of charge.

6. Getting to and from medical appointments. Loss of independence in getting around is a logistical mightmare. But many local surgeries offer voluntary drivers (either free of charge or for a nominal fee) to pick up and drive home. I didn't know about it - until I asked.

7. Tablets and prescriptions can be made up in dosette boxes (by days of the week x am x pm) and delivered to the door by pharmacists. It isn't a service that is advertised - but ask. Anything that makes life easier, right? It doesn't resolve the issue of taking the tablets not at all, or ten at a time...but that's another story.

* I ought to add that the Alzheimer's societies and associations produce a range of very helpful leaflets but I've still found that the best help has been word of mouth. I have to say that I started this journey more than 12 years ago and perhaps there is better guidance now than there was back then - so this is offered in the spirit of Polyanna's Pratical tips!

Dedication

2008-04-28T22:45:00.003+01:00

Diagnoses
for my parents

i Alzheimer’s

Once she found a goldcrest’s nest,
tucked it carefully in a crook, made sure
the entrance was clear and open.

Recently the winds have blown it far
from the tree, are gently taking it apart.

ii Infarct

The last dominoes perch unsteadily.
The rest have fallen so that their black
sides are uppermost, the numbers
and the narrative mostly obscured.

(Published in Pendulum: the poetry of dreams, ed Deborah Gaye, Avalanche Books 2008)
Copyright Roselle Angwin 2007.

Reprinted here with kind permission from the author

Telling it like it is

2008-04-25T12:18:00.005+01:00

Recent posts by other carers (Wits End & Alzheimer's Moments) have got me thinking. Which is great,because so often I find that I am so busy being busy like Rabbit, that I don't have time to stop and think. And the conundrum is this: what language do people with dementia speak? How do they tell us what they want to say, and how do we interpret it? And when all's said and done, given that most dementia contains an element of paranoia, is it credible?

This is one of the hardest things of all. There's no linguistic divining stick that will point you in the right direction. And dementia isn't like the Enigma - devilishly difficult but once you have the decoder, you're unlocked. It isn't a one size fits all. I guess the answer lies simply in knowing so well the person whom you are caring for, that eventually the verbal and non-verbal clues stack up.

Mum had and still has, latent paranoia. Ten years ago, it started with the central heating. Joan of Arc heard voices and Mum heard the central heating. We never quite decoded CH speak but it culminated with her being found in our village, wandering in her nightie. I was 500 miles away at the time but got a call from my father at about 3 in the morning, asking me to Sort It Out. Daddy had remarried and the divorce had been acrimonious.

When I eventually tracked Mum down via the police and the local hospital, she told me in whispered tones that I had to contact the Queen to beg for a stay of execution. It was just one of the funny episodes that we've been through with Mum. Funny with hindsight but deeply upsetting at the time. She was terribly alone, terribly scared and convinced that she was about to be executed. Luckily, she was in the care of an old-style nurse - a kindly soul blessed with great commonsense who knew exactly what it was all about. UTI. Hadn't heard of it at the time, but it now just trips off the tongue - Uterine Tract Infection. And it sends you very loopy, very, very quickly.

I've since learned that the elderly in general, and those with dementia in particular, are prone to UTIs. It's less to do with personal hygiene, and more to do with dehydration and not drinking enough to flush the toxins out of your system. (Cranberry juice is a helpful preventative but needs to be diluted with water to render it less acidic.) Often the remedy is very simple: a blast with antibiotics (watch the constipation!) and it's soon sorted.

So UTI is paranoia with a twist. But over time, I have also realised that just because clarity has long departed Mum's turn of phrase, that doesn't make her an unreliable witness. Last night when I visited her, I found her (unusually) unhappy. She was lying on a soiled sheet, in soiled clothes, half asleep. Not usual at all.

So I managed to coax her up, wheedle her into a shower and from there into some warm PJs and a freshly made bed. I even managed to dry her hair and cut her nails, a major achievement! Finally, she started to look a little happier and settled down to sleep. Her conversation had been a jumbled tale of being told off and being pushed in the cupboard. Nothing too alarming there - the tiredness that accompanies nightfall tends to exacerbate the latent paranoia. What was slightly different though, was that she looked hounded.

Dirty clothes and dirty sheets wouldn't worry Mum. She simply doesn't notice any more. But when I checked in the diary to see who had been in that night, it was a carer who finds dementia difficult. I don't know whether it's impatience, a lack of understanding or wilful misunderstanding. Or perhaps case overload. But she's the only carer to complain habitually that Mum is rude or stroppy. In response, I leave notes apologising and explaining that unfortunately, it is Mum's illness that makes her behave this way.

Not so long ago, another carer called me to say that Mum looked upset. She called because mostly (and thankfully), Mum is a cheery soul with rare flashes of irritation and frustration. On that occasion too, her previous caller had been the same carer who probably chastised Mum last night. Given that there could only have been 15 minutes max between my arrival and her departure (in fact, I arrived half way through her 30 minutes alloted visiting time), and given too, that Mum is no longer able to sprint from the conservatory and into bed - there is no doubt, in my mind, that Mum was already lying on the soiled sheets when the carer arrived. Yet the note in the diary read: "....sitting in the conservatory watching television. Not in a good mood. All well".

What can I do about it? Not a lot. There is a desperate shortage of caring carers and we are still struggling to get Direct Payments up and running. (Three "recruits" in our tentative care plan have had to withdraw before we even got started. All for very good reason, but it means our start-up has had to be postponed.)

The point is, that Mum is still able to communicate, even if it's a little unconventional or it's by non-verbal means. And she was probably right. Not about being shoved in a cupboard, but about being ticked off. Just because she has dementia, doesn't mean that she doesn't have anything worthwhile to say, or that she can't say it. Or that I shouldn't believe her.

A few years ago, when my father was diagnosed with a brain tumour, his speech was completely to pot. It was almost impossible to unravel the sense, but he was desperate to say something. And he cried. My father never cried. Like any family, we had been through the lot - blissfully happy times, sad and tortured times - and my father was always moved and affected - but he never cried. Until that night in the hospital.

Eventually, by repeating words and asking him to nod when I got it right, I gleaned that the night staff were uncaring and completely different from the day nurses. When my father asked for help to get to the bathroom, the night staff ignored him only to criticise and ridicule when he soiled the bed. It was the loss of dignity for himself and for the other patients in the ward, that made him cry. When I filed a complaint the next day, I was told that it was not the first and that action had already been taken.

So here's the thing: even if we don't understand, even if it doesn't seem possible or even probable, maybe sometimes they are telling it like it is. We just need to find another way to listen.

Perth & Kinross Leisure welcomes carers

2008-04-22T11:54:00.003+01:00

Heads up to anyone in P & K who is a carer and who longs to get back to the gym or join in with "normal" life again - and who simply can't afford the membership fees anymore...

Last year, I spoke to our local leisure centre, about extending discounted memberships to non-qualifying carers like me. Because I work (sort of), I don't qualify for a Carer's Allowance. And because it would be inappropriate to drag Mum to the gym with me on a two for one deal, I also don't qualify. But I'm still a full-time carer and I desperately need some stress-busting time. I bike a lot, usually round to Mum's, because that's free and a) it's good for my bottom and b) I can't answer the phone on my bike. But living in Scotland, there are the odd days, of hail, sleat, wind and rain - and that's just in the summer. Nay, I jest - but sometimes the wind defeats me and it makes biking a Bad Thing. Which is when it would be lovely to nip down to the gym.

Anyway in October, the Leisure Centre reviewed and said no, but they promised to put it on the agenda for the AGM in April. Last month I wrote a gentle reminder - and true to their word, I received an e-mail yesterday to say that discounted memberships for carers had been approved and would be available from 1 July 2008. The criteria by which you apply for membership have yet to be agreed so it's not done and dusted yet but it's good news and I hope others too will be able to take advantage.

So faites attention mes enfants: look out for press, posters in June - scrunch and crunch, pecs, abs and buns to the ready!

Have hair do, can boogie

2008-04-17T14:34:00.002+01:00

Mum was in fine mood today, so I thought we might try an excursion to the hairdresser, something that I had abandoned about a year ago because of Mum's growing dislike of washing her hair or showering. In fact, the twice weekly shower is really the only time that she swears at me. The shower is an event dreaded by both of us, I think. Mum is accusatory: "I never thought a daughter of mine would ever treat me like this". I plead, wheedle and soothe, talk gibberish to distract, but nothing really works. Thankfully, once she is sitting on the bed, wrapped in warm towels, her truculence subsides and gives way to tiredness. And so I undertook the monthly haircut (!) honing my skills as I chopped. I learned to become bolder. Trimming minute amounts just made Mum's hair look like it had been chewed. But today, I thought we might venture, so venture we did.

What a success!! It took a while to mountaineer the steps, but we arrived in reasonable time and the hair salon had been forewarned. H, the owner, was in attendance and couldn't have been kinder. When Mum realised that her hair was being washed, her head kept bobbing up from the bowl like a chicken trying to peck corn. Water sprayed and soaked the floor but H was unperturbed, sweeping Mum toward a chair. "Your daughter's keeping an eye on us", he flirted. Perfect! That got Mum giggly and girly, and she patted H's bottom. "You'll be out dancing tonight," continued H. He laughed with her, and took great care to cut and dry her hair in a style that was "gamine" rather than the old lady rollers - which Mum always hated with a vengeance. She trilled and batted her eyes, and loved every minute of it. H said I was to call anytime, and he would look after her. And he meant it.

Isn't that brilliant? Back home, Mum gyrated to Trilok Gurtu. I'm inspired. Look in local phone book. B for belly-dancers. Wonder if we could book a private class at home?

Cloq watching

2008-04-16T11:36:00.005+01:00

This isn't anything to do with dementia, but it has a spurious link through clock watching ...Just in case anyone else, like me, is waiting for bags to be delivered by Britiah Airways, I thought I would include Uniqlo's unique clock. (Click on the title to this post and you'll get there.) It's a strangely fascinating Jacques Tati style mix of ballet to Pearl & Dean music, comingled with screen wipes and web time. Love it - it's a "totally cool dude" moment in a Finding Nemo sort of way. I used to travel to Japan regularly and have a great affection for many things in that country, though never could quite get the hang of squid ice-cream.

Living in the provinces, I'm quite accustomed to BA's regular loss of luggage. At the last tally, it was approximately 8 out of 10 trips. Even my children are used to it. Just occasionally, BA score a double, as they did this time, and manage to lose my bags on both outbound and return legs! Irritatingly, when you tracker-check your luggage, BA's website shows them as 'delivered'. What they actually mean is, that the bags (allegedly) have reached the airport to which you were ticketed. Sorry BA, it doesn't compute. What delivered actually means for the rest of us, is that we have our bags in our sticky mits. No baby, no delivery.

But what has changed, is that even when your bags have been 'delivered' to the city where you land, it takes 2 days (and counting) to actually bring them to your door/room. BA says it's the courier. Hard to know what the courier says because they don't pick up the phone. (I guess they're too busy delivering.)

Still, I count myself a lot luckier than the hapless Hungarian who was due to catch a BA flight from Vancouver a couple of days ago. The flight was cancelled and the passengers herded off to a hotel for the night to be bus-ed down to Seattle the next day. The Seattle flight was delayed so we all missed onward connections. Except the Hungarian. He didn't have a visa for the States because he had never intended to go there. As far as I know he's still waiting at the Canadian/US border.

Hope he gets 'delivered' safely. Enjoy the cloq!

Sleepless in Seattle

2008-04-13T20:14:00.008+01:00

Seattle has been home for the last week, trying to focus on the conference and to mind the minders while I have been away.

This morning, I woke up to a txt from H2 asking for the home number of Mum's Monday-Friday private carer. Urgently. This being Sunday, it all seemed a little odd. But it's the same old issue. The Tena pants needed changing and I had forgotten that the respite carer had to leave a day earlier than anticipated. I had catered for the Morning Poo but forgotten completely about the Evening Poo. Pumping Mum full of good healthy porridge oats definitely has its downside....! But like everything, there is a funny side to it all. The changing of the Tena Pants has become something akin to the Changing of the Guard. Our day, Mum's and mine, is marked off by the hours at which the change is necessary. Too early - and there is little point. Too late, and in the morning, it could mean a whole bed strip and change. Only one of our regular carers can manage The Change, which means that I have to time my day and that of the children's by the times at which I must get round to Mum.

Paddy, our lovely old dog, had an endearing habit of looking completely surprised, when he farted. It happened increasingly as he got older. Eyes wide and full of indignation, he had no idea that he was the culprit. Funnily, Mum is the same. When we get to The Changing of the Pant, she points to the offender and demands to know, who is the perpetrator? Who had the audacity to put That There? I haven't the heart to explain and besides, an explanation would be pointless. So I also pretend to be shocked, and demur. "I have no idea, Mum" I say. "But you can be sure, that I'll ask them not to do it again".

A couple of years ago, I had thought that double incontinence would be my tipping point. This would be the time, that I would no longer be able to cope with the extra demands of personal care and laundry. But thanks to porridge, I can almost set my watch by Mum's digestive cycle - and we are still OK. How will I cope when I can no longer persuade her to get out of bed? Or perhaps, when her weakening leg muscles can no longer support her? Will that be our tipping point? I mention it, only because my fellow carer in New York has reached the point at which residential care for his mother looks like the only option. He is all cared out, sorely in need of rest and recuperation himself, and his Mum, unwittingly, is "playing up" which seems to be another all to0 common facet of dementia.

I can't work it out, but it's real enough. Mum uses emotional blackmail much less now - though we still have the odd day of childlike, attention-grabbing behaviour. But La Grande Pancake is peverse beyond measure! She longs to help - it's her self-affirmation that she can still manage - but you could stake money, that whatever you ask her to do, she will do the complete opposite. You almost wonder whether this is a weird trick of the brain that requires 'Alice Through the Looking Glass' speak: ie. you say the exact opposite of what you mean in a sort of verbal hamburger double flip.

I hope our NY carer gets the home that his mother (and he) deserve so that they can rediscover a relationship that has fun/love/affection as its base rather than the daily grind and worry of care.

Meanwhile, I discovered this week that Jimmy Hendrix was a Seattle son. He's a bit before my time, but I didn't know that. And I had no idea that aside from grunge, Seattle's roots are steeped in musical history. I like the city - it retains something of its pioneer feel and I love its diversity. Odd, though, that the skyline, at least near the waterfront, and the sprawl of the city immediately behind, is not peppered with church spires as in many European towns.

Fear not to entertain strangers, for in so doing, some may have entertained angels unaware

Barking mad....

2008-01-14T15:09:00.000Z

Finding things that will tempt Mum's appetite is one of the challenges that confront us daily. It seems that there is no middle way with dementia - either people over-eat, or eat nothing at all. One day, Mum's on the jelly and custard kick, the next, she'll have avocado and cream cheese sandwiches and all the rest is "cat-sick"! We just go with the flow as long as there is something porridgey with fruit for breakfast to keep digestion more or less on track! And to hide tablets that are spat out otherwise. Yes, I know you're not supposed to, but you try it. (Incidentally, if anyone else struggles with tablet prompt vs. tablet take - here's a handy hint that might just help. Try getting a box of multi coloured TicTacs and doing one for you (the horsepill), one for me (Tic Tac) and that sometimes works).

Back to the catsick. So it's hard to find alternatives for Mum in small portions. My homemade stews are deemed to be in the catsick category. So Tesco online helps a lot when I'm really rushed and Mum's stocks are low. And I often look at the Finest range, hoping to find something that might tempt her. Chicken in white sauce sounded good, so I bought that. The box looked pretty good too with a nice picture on the front. Until we looked at it closer and saw the paw print.

"I can't believe you were going to give your mother dog food," said Mary. Isn't that what all trans-atlantic rowers eat?!

Saving money isn't easy either for a spendthrift like me. But I'm now very good at T. K. Maxx shopping, using any combination of bicarb. of soda and vinegar for cleaning, and vaseline for face/hand/foot creams (what a lovely image this conjures up!) - and here's the latest that I tried this morning. Mushy avocado, 1 egg yolk and a couple of tbspns of olive oil for hair shininess. Slap it on for 20 mins, then shampoo off. Works like a dream! My US friends laugh and say I'm the Martha Stewart of homeliness. But MS ironed leaves for table decorations. Now that's a step too far, even for me. And of course, there was the tiniest issue of insider trading...

Pride goeth before a fall

2008-01-04T11:10:00.000Z

So much for my cosy contemplation that the Christmas spirit was alive and well in our house, thank you very much!

Over Christmas, "professional" care is more hit and miss than usual. Mostly, it's the minders and checkers who are on duty. Check there's a body, check it's breathing. So the yo-yoing between our house and Mum's is a little more manic than usual. A lot depends on her willingness to get dressed and on the getting in and out of cars. The hokey-kokey in-out of legs for cars, is hard going. On the days that Mum can't cope, it means preparing and cooking two lunches and two suppers served in two places at the same time.

Apart from forgetting to defrost the turkey, Christmas Day wasn't too bad and the boys. bless their cotton socks, remembered to write their thank you lists. By Boxing Day and her birthday, Mum didn't want to get up, not even for the changing of the TPs - so on a high risk strategy, back I came to cook the meal before returning to Mum's. Everything was just about perfick, until LGP insisted on helping by pouring boiling water over the Tarte Tatin. H2, who unusually likes food that is edible and who had had a morning of mending stuff that had been fiddled with or moved, erupted. Poor LGP went to her semi-unpacked bedroom and wept.

The atmosphere was as thick as Christmas pudding. Back we went to have another go at wheedling Grandma out of bed to get cleaned up. Thanks to the boys, we were back on track. Mum was articulated in and out of the car, and even coaxed into eating with the SBs while I tried to pacify LGP. But LGP was having none of it. Sitting in amongst the boxes, she was desperate. She had to leave. Her son hated her. The same son who has just spent the last year and just about every penny we own, demolishing and rebuilding our house to create enough space for her apartment. LGP came round eventually - but it was hard going to maintain the party spirit.

The sequel, is that H2, full of remorse, then tried to give LGP something to do in the kitchen. Now we have two broken cupboard doors, including the tumble dryer door and a blocked sink! In a curious twist, it made me think of West Palm Beach. I only visited once a few years ago, but in the space of just a few hours, I met three couples looking for little old ladies who had strayed. What a fantastic opportunity for walkers, fix-its and GPS tiaras....

"The Star"

2007-12-29T10:12:00.000Z

This is a prose poem by one of the most talented and lyrical poets writing in Scotland today. Whenever people ask me, "Wouldn't "Mum" be better off in a home?" - I think of this and it explains so much of what I feel. We are the star-keepers. We know about all the stars that Mum found, and we see them still, even if the night is dark and her eyes grow dim.

There was once a man called Kay who discovered a star. He found it in his telescope and it was golden, the colour of a Sri Lankan topaz. He watched it and watched it, for he knew that this was his star, that this was the first time astronomers and scientists had ever known of its existence. And the star was called after him - Kay's Star.

The man grew older. For a time magazines remembered the anniversary of his discovery, and it was as if his star came back into orbit. But then, one by one, they began to forget. New things were discovered: better ways of playing music, quicker ways of cooking food, easier ways ways of making money. Kay's Star grew less bright; it flickered on the edge of the sky and began to grow faint and grey.

The man could not care for himself any more. He was put into an old people's home where nurses said, "Could you lift your hands, Mr Kay?" and, "Now, we'll soon have you into your bath, won't we?" Every night in the ward, he looked out of the window, for his bed was nearest it, at the stars that crusted the huge heavens. And his eyes wandered across the blue-black, searching always for the star which he had found and which was now lost.

THE STAR from 'Columba' by Kenneth Steven, reprinted here with grateful thanks to the author.

Other works by Kenneth Steven include Iona, Salt & Light, Wild Horses and The Raven's Tale. Mr Steven will take you to old haunts and new, and some of the most beautiful and mysterious of Scotland's landscapes. They will live in your heart and in your spirit, even if you are not free to travel or cannot journey there.

Happy Christmas to all carers!

2007-12-24T12:36:00.000Z

Before things get too hectic at our house - I just wanted to wish every carer who is out there, a very Happy, stress-free Christmas.

Last night, I felt tired, desperately needing that clone to do all the things that I need to do! - and then I realised that the true spirit of Christmas is here, in this house, every day of our lives. We (the carers) are giving love and care 24/7, 365 days of the year. I know that even when I feel dead on my feet (!), my life is enriched by it. (Yes, I know, and the bank balance is impoverished!!!) So in that spirit, a HUGE thank you to all the people who have helped me, for every kindness that I have received this year to make my life a little easier. To those of you whom I have met through blogging - you all make such a difference because I know that I'm not alone - and of all people, you understand.

So here's the thing: we are all incredibly special people. I know that sounds horribly schmalzy, but I really believe it.

Happy Christmas everyone, God Bless and every happiness to you all in 2008.

Tx

Who is there to care for the carers? DNC for one

2007-12-22T21:15:00.000Z

This thing about having no-one to pick up our own pieces is vexing. There is, however, one service which is little known in our parts (Perth & Kinross) and which is well worth knowing, especially if you are caring for someone from dementia.

Ever heard of Dementia Night Care? Originally started as a project funded by the Scottish Executive, DNC offers night respite care in situ for carers whose nights are sleep-deprived. Several pilot projects started, but only two remain as far as I know. P & K is one, not sure about the other. The P & K team is run by three Honorary Sunbeams who fervently believe that there is little point in offering care unless they can shadow exactly, the care that we as carers offer. They like to meet you and the person you care for, so that they can learn as much as possible to make as smooth a transition as possible. They want you (the carer) to have a real break, free from worry, free from guilt. They will do whatever it takes - and nothing deters them.

The occasional bad-tempered outburst that is so typical of dementia is dealt with sympathetically and gently - it is nothing to be scared of, nor is it any reason to chastise. To them, it means that they must simply try a little harder to put the person in their care at ease. For us, a huge stumbling block has been personal care - from washing, brushing teeth, to dressing and the complete taboo (for my mother) the changing of the Tena Pant. (The Changing of the TPs has taken on the same ceremonial proportions as the changing of the guard. ) Whatever else she has forgotten, Mum knows that it is not normal to have someone else in the bathroom with you - much less, to allow your pants to be pulled down, removed and cleaned up in the process. "Outsiders" risk a sharp slap for their trouble - so the bottom line (!) is, that no-one tries any more.

Except for DNC. They think it is perfectly normal for Mum to object. "I would" says I. I has a smile that would light up the darkest of rooms. She doesn't need to work, and she left her last job at the local care home because no-one had the time to connect with the "inmates" any more. No holding of hands, no singing of hymns or old songs, no talking the jumbly jivy talk of the demented. No sharing of moments.

I does plenty of sharing. I saw her today to take a small gift of thanks for Christmas. In return, I got two huge parcels for Mum, including one for her birthday on Boxing Day. I never told I it was Mum's birthday! But somehow she knew....This kindness from an almost-stranger is all the more heart-rending when there is nothing from her son or her brother. Nothing for Christmas, nothing for her birthday.

If you think DNC could help you, ask about it from Home Care. Or if you email me, I'll make sure that you get the telephone number. Don't worry about cost: the service is free.

You might only get one night in three weeks, but if you are drowning in tiredness and stress, it might be just the lifeline you need.

Shared Care's Poet in Residence: "Give us a Break" a poem written for carers

2007-12-21T09:00:00.000Z

Elspeth Murray is poet in residence for the registered charity "Shared Care Scotland". SCS is determined to drive the provision for respite care in Scotland. Not respite care by numbers. Not respite care because we (the carers) have reached breaking point. But fun respite care - to be shared with your loved one. Or to be taken alone, or with your partner and children to escape and come up for air, knowing that the care (residential & in situ) provided for the person you care for, is just for them, and is tailored to their needs and preferences.

There is a universe of difference between caring and just "minding".

Give Us A Break

Who cares for the carers? Who gives us a break?

Let the movers move and the shakers shake

Till the system works for everyone's sake.

He’s always ‘my darling’, make no mistake,

But I bite my nails and tear out my hair,

Don't wait for the break-down – give me a break.

Five hundred thousand in Scotland awake

knowing they’re the ones who have to be there

to hold up the ceiling, for everyone's sake –

Sharing the load brings change in its wake.

Since humans are human and sainthood is rare,

Accept my reality – give us a break.

Respond to the pleas that all of us make

With phone calls, appointments, petitions and prayer,

Then stick to your promise for everyone's sake.

We’re asking for funding that's fair and not fake,

For time to recover, to rest and repair,

We’re unpaid carers – give us a break,

And do the right thing for everyone's sake.

For Shared Care Scotland’s conference Breaking Through April 26th 2007 . I spoke to EM at Shared Care's Roadshow conference in Perth in October and she kindly gave her permission to reprint her poems for carers.

Carers Brickbats

Reading Mr Man's wife's blog got me thinking. I also have family who could, but who don't. If they can't look after Mum for a day, they could take the kids out for a break. But they don't.

Over the last year or so, I have given a couple of talks about caring - and in thinking about my own family, I realised that inheritances are to be shared equally but responsibilities are not. And as dementia progresses and your mind disintegrates, so does the network of friends and family around you who variously can't help or won't help. So we are left to rely on state provided care. I have one or two fantastic helpers, who feel bad when they can't help me with Mum because she won't let them. So they look around for something to do, anything, that will lighten my load. They're brilliant and I love them to bits. But there are also some horrors out there.

Without being libellous, but in the spirit of having a bit of fun, I would like to invite any carers out there, to post their disaster stories about carers who have come in to care and who are worse than useless!! Who are the real Slack Alices?!

Carers' Bouquets

And just to balance the books, I'll do another post in a week or so to talk about the people who do make a difference. I would love to hear about your Honorary Sunbeams - people who are always there to do what they can to make your life easier. Our CPN, Gill B is an HS. So too is the GP, Dr. E. Mary and Evelyn (whom I pay privately out of the last vestiges of my earnings!) are soulmates and so is young Jayne from Crossroads.

Double Dutch?

2007-12-20T18:29:00.001Z

Why is it the Dutch who are "double" if something is incomprehensible? Why not Double Faroese or Double Tagalog?

One of the things that the LA had been concerned about in their assessment of Mum's assessment (!) had been the lock-down regime..! I say "lock-down" because that's how they make you feel, when they bring up the issue of Locking the Door. You know why you do it. The door is locked on a cold winter's day because the prospect of Mum trying to find our house in temperatures of sub-zero, to bring me a tea-bag without a coat, gloves, or proper shoes on, is ever-so-slightly a worse risk on the risk evaluation scale. "But it's against our policy to lock people in" says the LA. "We don't like it".

Neither do I. But if it's OK for Mum's door to be locked after a security check at night - when those with dementia cannot tell the difference between day and night - what's the difference? Double Dutch indeed. Or is it double standards? I don't think so - I think it's just a lack of commonsense. Rules is rules - even when they don't make sense.

It doesn't distress Mum. She isn't tugging at the door, desperate to get out. All the switches are turned off and Mum never attempts to cook anything. Bless her cotton socks, she hated cooking even when she could wield a wooden spoon. My brother and I were raised on a 365, 24/7 diet of salad. Meringue crumbled in Angel Delight was an exotic concotion she came up with AFTER attending a cookery course! (Oh Marco Pierre White, I have been lead down paths that you have barely dreamed of, that are so far distant from the Cusine Ordnance Survey.....!) She doesn't have a cat, so never puts ice-cream down in a bowl on the floor (See Y-O-Y for that oblique reference!)

And just for the record, I also took a photo of Mum (without her permission), so that I could give the police a home-made A4 laminated Identikit of Mum. That way, if she does wander, we can take her home immediately rather than process her via the local outpatients department after treatment for hypo-thermia...

Stuff that in your PC pipe and smoke it...!

The Christmas Panto & the front lobe

2007-12-17T17:28:00.000Z

LGP came with us to the Christmas panto, with the children, two of their friends and another grandma who is always very good to all the children. The panto is a stretch too far for Mum who is disturbed by the hoots, whistles and bells and general carry-on: always a stickler for good behaviour, last time, she remonstrated with our two for standing up and shouting much to their great embarassment. So now we give it a miss.

The panto was great fun and even LGP laughed at the outrageous Dame's doobul-entonders. And she also laughed at the Down's Syndrome couple sitting in front of us. Were they brother and sister? Husband and wife? Either way, they were a funny pair and she was riveted by them.

What to do, when the dottiness of dementia tips over into something that is quite repugnant, quite anti-social to the extent that it causes offence? That's a knotty dotty dilemma. LGP was never the most PC of people anyway, but it's hard to imagine that even she would have pointed and giggled before. I'm afraid, I just ignored it and fixed my eyes on something else in the hope that she would forget and tire of this behind-hand whispering and pointing. In truth, I hadn't a clue what I should do.

Hadn't thought of that one before.

Oh yes, the lobal link. While in Brussels, a friend of mine said that all your ability to behave properly and understand social dos and don'ts is contained in the frontal lobe of the brain. I didn't know that. Doesn't make much difference, if you can't change it, but there it is!

Reader, we got to the Carol Concert x 2!

2007-12-16T19:09:00.000Z

Success!!!!! We managed to attend the carol service with a full complement of grandmothers! Mum wasn't too tired, so I called the cathedral to see if there was a route in for wheelchairs. Missed the turning first time round, but we found a space only yards away from the door at the back. Mum was in a reasonably co-operative mood, so I managed to haul her out of the car without too much protest, plonk her in the chair and whizz into the cathedral just in time.

When the ocarinas started to play, Mum clapped her hand to her mouth and said: "What on earth's that? It sounds awful!" The children who were sitting near us, started to giggle. Of course young ocarina players sound awful, it's just that you don't say it! I then wondered whether a lifetime in choral societies would encourage Mum to singalong to every carol including the solos - but it didn't and it was great to see her singing the carols she did know, with a happy beam on her face. She loved being there, with the holly and the candles and all the children.

LGP was sitting with H2 on the other side - they arrived even later than we did. LGP complained that she couldn't see anything. But she was right. It's a curious thing in that cathedral, that wherever you sit, you are behind a pillar. Was it built by worthy farmers who knew that they might fall asleep in the pews and didn't want to offend the minister that his sermon was just a tad too earnest?!

The Kasbah & the Birthday Party

2007-12-11T20:53:00.000Z

Eldest SB finally got to invite 5 friends over for a sleepover!!! It's just taken us a year, but we finally made it. We put rugs down in the soon-to-be decorated room, made sure that all the leads and wires were dead (fried children - not a good idea), put in mattresses and left them to it!

Everyone piled in to two cars to go and see The Golden Compass - I have to say that I enjoyed it, and especially liked Lyra and Billy. The boys finally got to bed at about 10.30 pm, and swore faithfully to brush their teeth. On checking the socks on teeth quotient the next morning, I think we got about 2/6. Is that good? One child slept in the clothes that he arrived and left in. I'm not altogether sure that he even unzipped his jacket.

Despite the sleet of the night before, we then set off after a hearty breakfast of fried eggs, black pudding, sausages and bacon, to go fishing! Nothing caught, apart from two gloves and a hat. Then a hilarious (and perilous) ride in the old Land Rover through gorse bushes and down rocky crevices. Eeeks! But the boys loved it. And so did I.

Meanwhile B came down to look after Mum, but he was already in a snipy mood when I arrived to help her to bed. I had texted to see what his estimated arrival time was but thought I should come round, since I didn't hear back. Mum, who had been so happy to see him, was in no doubt that she had done something "wrong" as he chastised her for calling him Daddy. Honestly: who cares? I am mother, sister, daughter, servant, grandmother for all I know - but it doesn't matter. The next time I saw her, she was unsettled and sitting in the dark with her trousers off, refusing to go to bed. It took nearly two hours to coax her into drinking anything or getting to bed. The carpets were dirty, the sink unwashed. B had even had 6 hours to himself since X-roads was in looking after Mum as well, so he hadn't spent that much time with her. Certainly not taken her out. Thanks for stocking up the fridge? None. And I thank him for giving me two days in a year with my son? It makes you wonder. Will I be as unloved by my sons as Mum is by hers? Or for that matter, poor old LGP is by hers?

LGP wanders around the house looking lost. She cannot make a meal for herself, can barely make a cup of tea. She eats a piece of bread for breakfast, since toasting it is beyond her, then goes out for the paper and buys bread to eat when she gets home, having forgotten the first lot. In two months.she has become a full-time watcher. Just standing and watching what you are doing, with arms folded. It is a shadowy presence in the house that is a little unnerving until you get used to it. The boys don't want to be left with her, and are relieved when she goes to bed. They even asked if they could visit Mum with me, as they haven't seen her for ages. However batty Mum is, her livelong love of children and of her own especially, communicates itself if little else does.

Tomorrow is the carol service for the school. H2 doesn't want to take his mother. He is stifled by her watching presence, her slowness and (now) dull-wittedness. It's all very sad. She was a vibrant, intelligent, elegant woman - if selfish. Now all that is left is the last vestiges of elegance and a lot of selfishness. I have held off booking Pizza Express (where we would normally feed the SBs before attending the service) because I feel we should take LGP. The trouble is, she isn't really interested in the boys at all. I would like to take Mum - the boys would like her to come and I think with the new wheelchair we could manage, but H2 will spoil for a fight if I suggest it.

No room at the Inn. Or anywhere else for that matter, if you're one of the unwashed Batty People.

I heard on the radio yesterday, that Sheila Fogarty was interviewing someone about Direct Payments. SF asked if you could spend it on anything you liked, that helped. "Even a holiday" she queried. I would have called in, except like most of us, I had 101 things to do. But I hope to have time to write. DP, I'm sure, would be a blessing to many. But it doesn't resolve the problems of someone who needs full time care and for whom the money just isn't available.

Then it starts to look like: "Not my problem."

And another thing! Incontinence pants

2007-12-07T16:43:00.000Z

Does anyone have any sensible answer to why incontinence pants (not pads) cannot be had on prescription? I have asked the Incontinence Service but no-one has yet bothered to answer several emails later. Mum flushes pads down the loo - so we had to resort to pants unless we were going to block our village drains completely. But at 61p a shot, it all adds up....

If anyone else is in the same pants! - try www.youreable.com. It's about the cheapest I've found.

Working, not caring & Direct Payments 2

2007-12-07T15:38:00.000Z

I have just got back from 2 days in Belgium. The flight cost more or less £250 return - not too bad, and hotels, probably another £ 180 ish including breakfast. When I am away, my working day is a lot easier than at home - I start around 8-9 am and finish typically about 10.30 pm after dinner. The idea is to somehow keep a professional hand in, so that when I am "free" (euphemism for when Mum dies), I can "go back to work" (is that hysterical laughter I hear from fellow carers?) about the time that everyone my age is retiring. And like most other carers I've ever met, I have a growing mountain of debt that must be paid off somehow.

And this is how it works: in order to work for 2 days, I have to pay for a live-in carer for 2 days and the cost is around £200-300. It's not money that I begrudge at all. Our live-in carer is truly an Honorary Sunbeam - she is lovely and caring and Mum is happy with her. No longer, the dreaded call ("that call" says Mr Man's wife) when I am 1000 miles distant, 4 different time zones away, and in a meeting - "Mum has disappeared: is she with you?" ...Our Honorary Sunbeam copes perfectly and with a smile that is genuine.

I will invoice my longstanding and longsuffering colleague for some of my time plus costs. And since costs - the hotel and airfare - are way over the £85?/week stipend I am "allowed" to earn as a carer, I'm disqualified from the £45 ish weekly Carer's Allowance. Since I am far from being up to speed in my field - no time to read the papers I should, or to talk to my network of contacts - I feel I can only charge a discounted per diem rate. So for two days of work, I shall either be out of pocket or perhaps a meagre £30 the richer!

Meantime, there has been a reply to my questions about Direct Payments from the Home Care advisory. They remind me that although I must have an approved plan in place, we haven't yet been given the go-ahead for Direct Payments (they are to conduct another review of Mum's care needs! How can you need more than 24/7? Or perhaps we need less?), so therefore I should hold off for a while. That makes sense of a kind. But I was asked to come up with a plan in June. I did and here we are - 6 months later, no further on at all. How difficult is it, for Home Care to decide? I wonder in completely bad taste whether to start a Sweepstake: what will happen sooner - Mum's death or Home Care deciding to help? Galling - when we are all actually its employers!

Apparently the tentative £400/week is the biggest award ever proposed for Direct Payments. Maybe the only sensible question to ask Home Care is simply, how to put in 24/7 care on a budget of £400 plus a pension when their contribution is pegged at £12/hour - or 33/34 hours? Have they discovered true gold? Funny money with stretchy properties?!

And yes, we have to ask HMRC about the registration of self-employed carers. It isn't so straightforward say Home Care. But it's the responsibility of the carers to register, so ...what? If we can't register, we can't use Direct Payments, even if we get the award?

We once got "that call" on about Day 2 of one of our rare family holidays. I was in Tunisia and about to leave for the Sahara with the boys when a Home Care carer (who didn't know mum)phoned me to ask if she was with me! Mum was a lot better than she is now, but even so, I had forewarned the office that I would be away and asked for the same team of carers to visit because I wouldn't be there to help for a week or so. I even sent reminders because I know that scheduling is a pretty tough job to do, and most of us are willing to do what we can to help. Luckily, the manager couldn't be contacted and it was one of the old carers who found Mum and took her back home. Using plain old commonsense, she got it sorted.

Since then, we have taken to locking the door. Completely politically incorrect and there are howls of protest from social services. But it doesn't distress Mum and it keeps her safe. The fire risk is nil because she hated cooking even when I was a child. Which is better? To offend political sensibilities - or to ensure that Mum doesn't wander out without coat on a cold and dark winter's night?

Who cares more? Home Care who are off-duty shortly after 5 - or those of us who are never off-duty?

Wordploy by the WP

2007-11-30T21:49:00.000Z

The Washington Post has published the winning submissions to its yearly contest, in which readers are asked to supply alternate meanings for common words.

And the winners are:

1. coffee , n. the person upon whom one coughs.
2. flabbergasted , adj. appalled by discovering how much weight one has gained.
3. abdicate , v. to give up all hope of ever having a flat stomach.
4. esplanade , v. to attempt an explanation while drunk.
5. willy-nilly , adj. impotent.
6. negligent , adj. absentmindedly answering the door when wearing only a nightgown.
7. lymph , v. to walk with a lisp.
8. gargoyle , n. olive-flavored mouthwash.
9. flatulence , n. emergency vehicle that picks up someone who has been run over by a steamroller.
10. balderdash , n. a rapidly receding hairline.
11. testicle , n. a humorous question on an exam.
12. rectitude , n. the formal, dignified bearing adopted by proctologists.13. pokemon , n. a Rastafarian proctologist.
14. oyster , n. a person who sprinkles his conversation with Yiddishisms.
15. Frisbeetarianism , n. the belief that, after death, the soul flies up onto the roof and gets stuck there.
16. circumvent , n. an opening in the front of boxer shorts worn by Jewish men.

Direct Payments...policy at odds with the law

2007-11-30T21:05:00.000Z

In December 2006, a Social Care Officer assessed Mum as needing 24 hour support, 7 days a week. The review was prompted by the Community Psychiatric Nurse owing to Mum’s deterioration since her last formal review in 2004 when she was discharged from the local Royal Infirmary.

The CPN and Community Care suggested that we look at Direct Payments as a means to help provide the support and care that would enable Mum to stay at home. Her experience with institutionalized care has been traumatic. Everyone involved in her welfare (me, (PoA & Welfare Guardian), CPN, GP, Social Care Officer, OT) agrees that she is best cared for at home and that the attendant risks (eg.fire etc) are minimal/contained.

In May-June, a meeting was held to review the DP option and it was decided that we were met the criteria and therefore should apply. Present at the meeting were the CPN, Social Care Officer, P & K Community Care Planning Officer. The DP Co-ordinator/Facilitator was due to attend but couldn't as she was on long term sick leave.

I put together a team based on my input and the services of a nurse and carers hired privately. The nurse agreed to cover 4 x 24 hr periods (4 days), with cover provided both by her and by a colleague, similarly qualified. The remainder of the time would be covered by me and by carers who were on PAYE rolls elsewhere but who had sufficient free time to take up self-employment.

In August, I emailed Home Care for a progress report and for advice on the next step. It emerged that the Social Worker had been transferred to a new department, the head of Home Care local office was off on extended sick leave, ditto the Direct Payments co-ordinator. No-one was in charge and Mum's case had not been reassigned. After two months, it was taken up again by a new Social Case Officer and a stand-in replaced the DP Co-ordinator.

In November, the Community Psychiatric Nurse asked for an update but heard nothing. However, Home Care did indicate that perhaps they would reassess need. The CPN’s view is that there is little point since the care is unlikely to be less or different than it was before.

The care required is supervised companion care for someone who is mentally unable to live life normally, taking normal decisions and actions. Mum is not bedridden, though she walks with difficulty, and her medical care is minimal (administration of 3-4 tablets a day). She needs help with dressing, washing, toileting, eating, drinking, going to bed at a normal time, being as active as possible, being taken out/socializing, and being encourage to retain communication skills.

Direct Payments provides an advisory service to assist carers to set up and administer the scheme. While they are helpful, LA policy seems to be at odds with the law. One of the big issues is whether to employ carers or whether to enlist them as self-employed personal care assistants. That requires each person to be registered with HMRC as self-employed and accordingly pay NI2 contributions. HMRC’s view (and they are becoming v picky about DP employment) is that “The case law tests normally indicate that a care worker who looks after a client in the client’s own home is likely to be an employee”. Sterner still - they warn that it is for the Inland Revenue to determine who is and isn't a self-employed carer - not the client, nor the carer.

DP says that there is no problem recruiting people to care for Mum and registering them as self-employed. They advised putting a card in the local supermarket as the best way to recruit carers since there is a need to have a team composed of about 6 carers to cover for sick-leave. According to DP rules, each must be registered as self-employed and disclosure-checked. Understandable. Laudable, even. But who for a pittance, will register, pay NI and be disclosure-checked for a part-time, maybe job?

Having found someone who is able to care for Mum and having trialled 4-5 periods of care that has been paid for privately, we were anxious to keep the same “team” in place. Dementia care is very different from caring for someone who has cancer – the dementia sufferer has no understanding of why strangers are in their house or apparently “caring”, therefore qualifications on paper are not enough.

DP says that the maximum award to which we would be entitled is £ 407, based on the average cost of residential care (£600 p/w) minus the average contribution paid by clients. For self-employed carers, they will contribute £12/hour, for employed PAYE carers around £ 11/hour.

The rate of pay, that we have negotiated with the nurse is much less per hour for 24 hour care, based on the fact that the sleepover, is mostly an undisturbed night. DP has agreed in principle with the proposed schedule of 4 x 24 hour periods and they are happy with the arrangements for the remaining 3 days of the week. But according to Scotland’s Personal Assistant & Employers' Network (an advisory body reporting to the Scottish Executive), tthe arrangement would contravene minimum pay legislation and working hours because each tranche of cover is over 24 hours. Despite the fact that there are many private carers who provide care in situ (for example for respite care), SPAEN says that to work for 48 hours is against the law and almost certainly disqualifies the carers for working for other clients thereby also disqualifying them from s/employed status.

In fact, the hours worked are a matter for negotiation between the provider and recipient. The nurse is not “on duty” 24 hours a day since Mum’s pattern of care is that she sleeps at 8.00 at night, and rarely gets up before 9-10 am. There is a bedroom provided for use by the nurse. But SPAEN reason that were anything to happen, it would be the nurse who is responsible and that we could end up in an employment tribunal.

More controversial still, is the view held by Carers UK, the Disabled Living Foundation and the National Centre for Independent Living – all agencies whom carers are encouraged to contact for free advice re DPs – that the local authority is failing in its obligation to provide free personal care and is acting in contravention of the 1990 Single Shared Assessment Act (?) in constructing an award that is arrived at artificially.

The agencies argue that if Mum was assessed as needing 24 hour care by the Social Services, we should be awarded a sum that is much more realistic in terms of setting up care in situ. Based on the agencies’ own figures and commercial market rates, that works out at around £ 1200 per week (day care + sleepover rates of around £ 80 a night). No LA will pay such a large sum to an individual – so there seems little point in arguing the toss.

But you have to ask: what are carer’s rights?

In addition, SAEN say that the public liability policies recommended by Direct Payments don't stand up to muster if the carers aren't properly registered. And if the carers are self-employed, apparently they should be registered with the Care Commission. No mention of this in the Direct Payment guidelines that I've seen. Alternatively, we should secure the services of an agency - but agencies charge £ 14-15 per hour for carers who are far less qualified than the nurses. These are charges that would cripple the £ 400 award and render the whole completely unworkable.

Direct Payments has asked for disclosure checks or sight of existing. I have a disclosure check in place, so too do two other carers. Disclosure Scotland says that the self-employed do not have the right to ask for their own disclosure checks. Direct Payments says that an Enhanced Disclosure check suffices – SPAEN says that it is place (not person) specific – therefore each worker needs one.

I have no idea what we are entitled to, whether the Local Authority is acting appropriately or not. I have asked for copies for Mum’s assessment and mine, as principal carer, but nothing has been forthcoming. I think I’m entitled to a copy by law but I have no idea.

I suspect the Social Care Officer and the DP stand-in has no real idea either how to implement Direct Payments for personal care. Not their fault, since they are all new to the post and new to the case. I’m pretty certain that their remit is to carry out LA policy cost-effectively but we are all ignorant of what is required by law. But I have a legal and filial duty to sort out care – and at this rate, Mum will be dead before we reach first base.

Currently, Mum receives 1hr 30 mins of free personal care a day.

LiveActive....but only if you can tick the box

2007-11-30T20:40:00.000Z

A week or two ago, I gave a presentation to the Pinky Chickenbutts, a new post created by the LA in their wisdom since they did away with the old post (which did much the same thing) in the "Quality" reforms of 2004. I spoke about the role of carers, like me, who have carer creep. Gradually the business of caring obliterates everything else that you do in the rest of your life. Not poor Mum's fault. If she were cognisant, she would be appalled.

So in a Bold Move, and recalling the lovely days when I trotted off to the gym each lunchtime and started the mornings with a 4 mile run or 50 lap swim, I called the local leisure centre to enquire about membership of Spectrum. It's a fabulous project that gives all members complementary access to any number of facilities in the LIve Active scheme. All to do with getting every Pinky Chickenbutt off its butt and strutting its stuff. But as membership is £25 a month, it's a bit beyond the carer's wallet. There is a concessionary rate of £15 a month for those who can haul in their disabled/impaired dependent - or for those living on benefit or income support but nothing for those of us who occasionally earn more than £80 a week and therefore are disqualified from any kind of support.

Tom came to the rescue. "Since you don't fit into these categories, let me call HO and see if we can do something else" he said. Dear good kind Tom. The world should be full of Toms. Tom called back - "If you can prove that you are a carer, we can offer you the concession". "Would a doctor's note be OK, or something from the Community Psychiatric Nurse or Community Care?" I asked. "Sounds good to me," said Tom.

In euphoric mode, I emailed AlzScot to see if we could put it in our newsletter so that all carers could benefit. And as I am at war with HMRC and Home Care over Direct Payments, it was good to have something to celebrate. Letters came in from the Sunbeams in Community Care and the CPN testifying to my dutifulitudiness as a carer, so armed with these and the application form to join Spectrum, I made my smiley way to the centre.

"I'm really sorry" said Tom. "Stella in Marketing says she can't do anything until April next year. They've recognised that you're an Untapped Market Opportunity though and we do want to do something."

Poor Tom. Yesterday, I had told him that he had made my day. Today, he felt really bad. But at least I'm a UMO, so that's something isn't it?

Back to sit on my pinky chickenbutt then.....

Got to laff

2007-11-08T17:07:00.000Z

Home Care, in their wisdom, are now dispatching carers (sorry, SCOs - Social Care Officers) from another office 15 miles away because apparently, there are none left in our neck of the woods! Met one poor soul this morning with a very puzzled Mum. SCO Robertson* had neither case history, nor meds, and diddlysquat idea of what was required. (You could have felled an ether equivalent of the Amazon, with the number of profiles and updates that I have emailed to TPTP). All she had was a name, a keysafe number and an address in a place that she didn't know and for which there is no streetmap. Laff, dear Reader, this is Caring.

Meantime, LGP returned happy and contented from her excursion to Edinburgh only to turf our supper in the loo! It had been defrosting in the sink in one of those freezer bags but LGP couldn't work this one out. Next you know, there are carrots in our bathroom. Asked if I would accompany her while she drove to the happening places so that she wouldn't be imprisoned in the house. Ye Gads.

Mr. Mac the gardener put in an appearance yesterday. Mum was delighted and skipped girlishly from the conservatory to the backdoor. Mr Mac had a sort of hounded look about him, but he definitely has potential as a mantlepiece man. (Aunty W's term for collectible men, of whom she has a goodly number!)

Mum accused Mary of winking at him. "I'm all right there", said Mum.

And so you are, Mum. So you are.

The Big Day

2007-10-16T10:18:00.000+01:00

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?

2007-10-04T18:56:00.003+01:00

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...

2007-10-02T16:25:00.000+01:00

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?

2007-09-26T10:12:00.000+01:00

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

2007-09-25T15:15:00.000+01:00

"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

2007-09-25T08:39:00.000+01:00

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

2007-09-24T10:10:00.000+01:00

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...

2007-09-24T09:57:00.000+01:00

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...

2007-09-24T09:39:00.000+01:00

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

2005-11-09T16:02:00.000Z

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

2005-11-04T11:32:00.000Z

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

2005-10-18T12:40:00.000+01:00

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

2005-10-16T00:23:00.000+01:00

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

2005-10-08T21:07:00.000+01:00

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

2005-10-04T23:55:00.000+01:00

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

2005-10-03T15:20:00.000+01:00

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

2005-09-29T12:13:00.000+01:00

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

2005-09-27T13:30:00.000+01:00

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

2005-09-16T21:42:00.000+01:00

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

2005-09-14T20:20:00.000+01:00

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....

2005-09-13T15:35:00.000+01:00

Summer sands

Locks & other things

2005-09-08T13:44:00.000+01:00

To BackMan to get back destressed, and he tells me about his sister-in-law who teaches walking on fire! All of his children have stepped on coals with not a burn to their name. His oldest, when he was just 8, knelt on the coals in grey school trousers, rubbed coals on his face and came away with only one tiny blister on his toe. Not a mark on the trousers. BM says that the only explanation he could offer was that the combined energy of the group was greater than the energy of the fire and therefore the fire could not harm the firewalkers' feet. Maybe that's what I need. To empower my feet.

Destressed shoulders immediately rise a notch. The (second, recently installed) KeySafe is now jammed, and this time Mum is locked inside the house, without breakfast, without tablets! Drive back to the house again, de-jam the KeySafe, reset the lock, unlock the door. Mum is back in bed and tries to tell me about some lovely people who talk each day through the letterbox. Tablets, make lunch, tea and sing the Pooh song to her. Big smile.

SB has made the swimming team, and both boys make a bold attempt to eat lamb's liver. Not bad at all!

Sunbeams

2005-09-06T13:37:00.000+01:00

The thing about sunbeams is that they are supposed to shine. Throughout the day. That's quite a tall order, even for a 40-something, well-practised, full-on beam. But today is off to a running start. It's 8.30am, and Mum hasn't yet called to say that there is a strange woman on the end of the phone telling her to try again later. The boys are on their way to school with only a 5 minute argument about why boring parents confiscate aggressive, unfunny PS2 games. We compromise. Promise to find the game and SB will observe the Not To Be Played rule. No wonder Britain doesn't have a written constitution.

Mum is washed and spruced and ready for the day, and the lovely young girl who has come to help out has offered to play the cello for her. Mum would love it. Also discover that her regular cassette of tablets have not been picked up this week and so she has been without medication for three days. The lovely cellist leaves, and leaves the electric plate on full heat. Lucky I was here, and lucky I noticed. Lucky, lucky.

Five phone calls and I get to speak to the District Manager in charge of home care. Sounds very sympathetic. I assure her that my criticism is directed at the new rota system, and not at any of the ladies who attend Mum. She, we, I, really am lucky. Thanks to the ladies here, Mum is saved from the institutional care that she so fears. But since the rota changed, all the keys to the house have been lost, the keysafe broken, and like buses, the worthy ladies arrive either not at all, or in convoy. Still, they are caring and compassionate for the most part, and are careful to respect Mum's dignity. Even if she reminds "staff" to "wipe their feet".

When I was at university, I boosted my meagre stipend as a mopper and marmelade spreader in a care home in England. The home looked like the sort of place, that if you had to make the difficult choice of putting a relative in care, this would be first choice.

But Matron was all profit margin before patients. Ladies were dressed, but sat in wheelchairs without underwear "to cut down laundry bills". Elizabeth, a bright 24 year old, cruelly struck with MS, had to wait over the weekend before Matron would sanction the buying of cream to ease her muscle spasms. When I brought some to her after I went off-duty, Elizabeth broke down in tears. It was such a little thing. The young policeman,also with MS who soiled his sheets every night, turned his face to the wall while I cheerfully cleaned up the mess. A tall, blue-eyed and pretty 20-year old sunbeam was too painful a reminder of all he had lost.

My brother sees homes and sees the freedom from the day-to-day grind of mopping, reminding and not minding the querulous complaints. But while I am self cast in the role of Guardian Angel, residential care even with its glossy Homes and Gardens brochures must remain our last and final choice

Testament

2005-09-05T13:34:00.000+01:00

The Dandelion Clock is a testament to my mother.

The Dandelion's puffball can tell you the time, but it is a fickle instrument. Time is dependent on how hard you puff and how quickly the seedlings fly away. The one thing that is constant, is that in the end, all the seedlings are gone. Dents de lion and pissenlit - it's all the same in dementia.

Born on the South Wales/ English border to a mother who died only a few hours later, Mum has lived her life, not especially happily, but with dogged determination. Devoted to my father who walked out when I was 15, my mother lived off Marmite and Ryvita and brought up my brother, me and our dog. Now in her 80s and suffering from dementia, her prodigious memory, that has the unfortunate ability to recall the slightest slight, is slipping away.

We four, two rats and a cat, are coping pretty well and life is still not without joy. We are blessed with the good-nature and love of two small boys who have two slightly wonky grandmothers, a loving but irascible father and me, their globe-trotting mother who knew very early on that Jesus wanted her for a Sunbeam.