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?