Saturday, December 29, 2007

"The Star"

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.

Monday, December 24, 2007

Happy Christmas to all carers!

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.


Saturday, December 22, 2007

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

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.

Friday, December 21, 2007

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

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.

© 2007 Elspeth Murray

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.

Thursday, December 20, 2007

Double Dutch?

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...!

Monday, December 17, 2007

The Christmas Panto & the front lobe

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!

Sunday, December 16, 2007

Reader, we got to the Carol Concert x 2!

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?!

Tuesday, December 11, 2007

The Kasbah & the Birthday Party

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."

Friday, December 07, 2007

And another thing! Incontinence pants

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 It's about the cheapest I've found.

Working, not caring & Direct Payments 2

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?

Friday, November 30, 2007

Wordploy by the WP

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

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 ( 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

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.....

Thursday, November 08, 2007

Got to laff

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.

Tuesday, October 16, 2007

The Big Day

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

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

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

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

Thursday, October 04, 2007

Stressed - qui moi?

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

Tuesday, October 02, 2007

Operator, operator...

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

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

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

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

Wednesday, September 26, 2007

Is Anybody There at Home Care?

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

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

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

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

Tuesday, September 25, 2007

The Mystery of the Chinese Dragon

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

Aaaah. Well done my little one.

Rock & rollers

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

Only thing is, it's tomorrow night.

Monday, September 24, 2007

Ring a Ring a Roses

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

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

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

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

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

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

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

So to continue...

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

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

How time flies...

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

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

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

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