tag:blogger.com,1999:blog-8463625137109611552024-03-04T22:13:50.422-08:00Carer's JournalI am a member of a very exclusive club, but one you would never wish to join. And anyway, you can't unless you have been given the code - the genetic code. Membership of this club is handed down from family to family and pre-selected before you are born.
Huntington's Disease: a progressive, degenerative and incurable illness that destroys whole families as it passes from parent to child. I thought it would be me who inherited it from our mum - instead it was my brother.
Unknownnoreply@blogger.comBlogger145125tag:blogger.com,1999:blog-846362513710961155.post-47562955836702472512022-11-23T11:29:00.004-08:002022-11-23T11:38:01.722-08:00 Life After Caring, three years on. <p><span style="font-family: Cambria, serif;"> </span></p><p class="MsoNormal" style="font-family: Cambria, serif; margin: 0cm;">Did my last clean this afternoon, posted the keys through the letterbox and walked down that familiar road for the last time. <o:p></o:p></p><p class="MsoNormal" style="font-family: Cambria, serif; margin: 0cm;">After three years of freelancing, taking a variety of part time jobs that eventually mounted up to juggling five at a time, I’m ready for a change. <o:p></o:p></p><p class="MsoNormal" style="font-family: Cambria, serif; margin: 0cm;">When my caring role suddenly ended three years ago, I was 60 and had lost all sense of thinking about a career – all that goes out of the window when you’re the primary carer for a loved one with complex health issues, especially if you’re an older woman who wasn’t on a conventional career ladder in the first place. <o:p></o:p></p><p class="MsoNormal" style="font-family: Cambria, serif; margin: 0cm;">Without a profession to go back to, or any confidence in myself (despite the incredible 360 degree project management skills that carers have to develop) I wasn’t sure what to do next. My Carers’ Allowance finished, and although a pitifully small amount, it was still a regular income. Caring costs, indeed, and after years of propping my brother up financially, I had very little savings to fall back on. <o:p></o:p></p><p class="MsoNormal" style="font-family: Cambria, serif; margin: 0cm;">I‘d need to get a job, but who would want a grieving, hearing-impaired 60 year old who’d been out of the job market for several years, with a metre-long CV but no easily explainable skills? <o:p></o:p></p><p class="MsoNormal" style="font-family: Cambria, serif; margin: 0cm;"><o:p> </o:p></p><p class="MsoNormal" style="font-family: Cambria, serif; margin: 0cm;">I was super lucky to meet a friend who needed some help with her cleaning and housekeeping business, just at the exact time I needed some work, so serendipity came to the rescue. Not one of life’s natural-born neatniks, I’d developed cleaning and organising as amazing new super-powers while caring for my brother, because his condition involved a hell of a lot of accidents and spillages. <o:p></o:p></p><p class="MsoNormal" style="font-family: Cambria, serif; margin: 0cm;">I kept working pretty much through the pandemic and continued to have a lot of lucky breaks and some brilliant freelance roles.<o:p></o:p></p><p class="MsoNormal" style="font-family: Cambria, serif; margin: 0cm;">But I know lots of people who haven’t been as lucky. Family carers give up so much, and many never really find their feet back into work; in spite of having lots to offer the world, the world doesn’t know how to value their skills. And please don’t suggest paid care-work. It’s not about being too proud or too squeamish: most of us are so burned out when our loved one dies that looking after anyone else is the last thing we can or want to do. <o:p></o:p></p><p class="MsoNormal" style="font-family: Cambria, serif; margin: 0cm;">So many suddenly-ex carers find themselves in this position, recently bereaved and completely out on a limb, not sure who they are or where they fit in, in the world and not of it. And very close to poverty, if not actually there. <o:p></o:p></p><p class="MsoNormal" style="font-family: Cambria, serif; margin: 0cm;"><o:p> </o:p></p><p class="MsoNormal" style="font-family: Cambria, serif; margin: 0cm;">That’s part of the reason for me making a change now – after three years of getting by with multi-job juggling, lady luck has smiled on me again and I’m taking on a new full time role and going to work at the Sheffield Carers’ Centre. Where else, really? It’s an organisation that has helped me many times in the past in hours of need, and it's certainly where my heart lies.<o:p></o:p></p><p class="MsoNormal" style="font-family: Cambria, serif; margin: 0cm;">It will take a while to learn the role and how best to support unpaid carers in 2022, (especially at a time of recession, NHS on its knees and astronomical heating bills) but I really hope to be able to help – if only as a sympathetic ear at first. <o:p></o:p></p><p class="MsoNormal" style="font-family: Cambria, serif; margin: 0cm;">It feels like a good thing to look forward to this Carers Rights’ Day, and even if that doesn’t affect you or even anyone you’re close to, please just remember this – no-one plans for the role. Whoever you are, you may find yourself needing friends and family to care for you, or looking after someone you love. It really can happen to anyone, so please, give a thought to unpaid carers today and if you possibly can, add your voice to the lobby for social care to be finally addressed by the government. <o:p></o:p></p><p class="MsoNormal" style="font-family: Cambria, serif; margin: 0cm;"><o:p> </o:p></p><p class="MsoNormal" style="font-family: Cambria, serif; margin: 0cm;"><o:p> </o:p></p><p class="MsoNormal" style="font-family: Cambria, serif; margin: 0cm;">https://www.carersuk.org/news-and-campaigns/carers-rights-day<o:p></o:p></p><p class="MsoNormal" style="font-family: Cambria, serif; margin: 0cm;"><o:p> </o:p></p><p class="MsoNormal" style="font-family: Cambria, serif; margin: 0cm;"><o:p> </o:p></p><p class="MsoNormal" style="font-family: Cambria, serif; margin: 0cm;"><o:p> </o:p></p><p class="MsoNormal" style="font-family: Cambria, serif; margin: 0cm;"><o:p> </o:p></p><p class="MsoNormal" style="font-family: Cambria, serif; margin: 0cm; vertical-align: baseline;"><br /></p><p class="MsoNormal" style="font-family: Cambria, serif; margin: 0cm;"><o:p> </o:p></p>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-846362513710961155.post-56085140084753396702021-10-17T03:50:00.002-07:002021-10-18T01:37:21.934-07:00Life After Caring<p><span style="font-family: "Times New Roman";"></span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_DLNWqtv_Db58UA7dU-icRwQOzNTiUlnNzbC13fldCxnZXI2Tj_84PkqyaLdnRHKLxrwGFlvNowGDlGtKfTRN01z9Pc4A_wgHFMSlzuEMl5V3Ktk-q0-AeW6e8IrS41EA8WbrzQ2lIj8/" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="2048" data-original-width="1536" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_DLNWqtv_Db58UA7dU-icRwQOzNTiUlnNzbC13fldCxnZXI2Tj_84PkqyaLdnRHKLxrwGFlvNowGDlGtKfTRN01z9Pc4A_wgHFMSlzuEMl5V3Ktk-q0-AeW6e8IrS41EA8WbrzQ2lIj8/" width="180" /></a></div><br /><span style="font-family: "Times New Roman";">It’s been two years and three months since Nick died, two years and a month since the funeral, and twenty four months since the end of my Carers’ Allowance.</span><p></p><p class="MsoNormal" style="font-family: "Times New Roman"; margin: 0in 0in 0.0001pt;">The most, and possibly only, generous gesture in the entire process of CA is that when the person you cared for dies, you get eight more weeks of the payment while you wind up affairs on behalf of the deceased. I must say, I was grateful for that. Not only for the money, small though it is, but for the recognition that even after the person is gone, your caring role doesn’t simply stop dead in its tracks. You might become a carer overnight but you don’t un-become one just like that.</p><p class="MsoNormal" style="font-family: "Times New Roman"; margin: 0in 0in 0.0001pt;"><o:p> </o:p></p><p class="MsoNormal" style="font-family: "Times New Roman"; margin: 0in 0in 0.0001pt;">Two years on, I’m not sure if that sensibility has entirely left the building. That sense of acute responsibility, being always on the alert and poised for action, always aware of the next thing that needs to be done, never quite able to relax completely because you know from experience that you just daren’t – when you’re caring for a vulnerable or sick person, those are reactions that you carry in your body, every cell on the alert, every part of you involved. I’ve carried that with me for a long time. It’s only now that I am starting to reassess. </p><p class="MsoNormal" style="font-family: "Times New Roman"; margin: 0in 0in 0.0001pt;"><o:p> </o:p></p><p class="MsoNormal" style="font-family: "Times New Roman"; margin: 0in 0in 0.0001pt;">I suppose it didn’t help that just a few months after Nick died, Covid happened and suddenly we were in a different kind of emergency mode. I didn’t make any bread over lockdown, or manage to grow an avocado stone into a lush sapling (though it did sprout into a little leafy plant until the cat took a dislike to it) but I did write a book, reliving some of the strongest memories of my family and the experience of caring. And I went out to work, because for a sixty two year old woman who’d been out of the employment market for some years (though occupied full time just keeping my brother alive and on an even keel), there was no career path to resume, no furlough or self employment grant, no working from home.</p><p class="MsoNormal" style="font-family: "Times New Roman"; margin: 0in 0in 0.0001pt;"><o:p> </o:p></p><p class="MsoNormal" style="font-family: "Times New Roman"; margin: 0in 0in 0.0001pt;">Universal Credit didn’t work out for me because as a married woman they automatically means-test your partner. My husband had forfeited a large chunk of his pension to retire early on mental health grounds because his job was killing him. We didn’t qualify for UC because he’d had Covid very early on which left him very shaky for weeks. He wasn’t physically fit for work or willing to think about looking for it at such a precarious time. Especially when the world had shut down so much that the available jobs involved going to work in public places with limited access to PPE. </p><p class="MsoNormal" style="font-family: "Times New Roman"; margin: 0in 0in 0.0001pt;">It took several months for them to let us know their decision, while meanwhile younger people we knew who’d applied at the same time were getting UC with no questions asked, some while also on furlough for a part time job in a pub! Later on when support grants were offered to the newly self employed, I was ineligible for that too because the £67 a week Carers' Allowance that had been my sole income in the year before Covid meant that I had "earned too much". It sometimes seemed that support was available to all comers except carers, the one sector in society who are not just unacknowledged but penalised for doing their job. </p><p class="MsoNormal" style="font-family: "Times New Roman"; margin: 0in 0in 0.0001pt;"><o:p> </o:p></p><p class="MsoNormal" style="font-family: "Times New Roman"; margin: 0in 0in 0.0001pt;">I didn’t mind going out to work; still reeling from the bereavement and sudden loss of purpose, I wanted to work.</p><p class="MsoNormal" style="font-family: "Times New Roman"; margin: 0in 0in 0.0001pt;">The immediate option, the one that you’re immediately offered in this situation, is of course care work. I’d done it before and it was a consideration, but generally when you have been the carer doing everything for a person you love, being their warrior and their second brain, chasing the appointments and barking your shins on their wheelchair, much too familiar with the language of tablet dispensing, red buttons and bedsores, grab rails and continence care, you have done enough. It’s not that you’re too proud, you’re just exhausted. The last thing you want is to do all that for someone else, often working for the kind of care agency you never wanted going anywhere near your person. And anyway, you are recently bereaved and still grieving.</p><p class="MsoNormal" style="font-family: "Times New Roman"; margin: 0in 0in 0.0001pt;"><o:p> </o:p></p><p class="MsoNormal" style="font-family: "Times New Roman"; margin: 0in 0in 0.0001pt;">So, no to paid care work. Instead I got a job as a cleaner. </p><p class="MsoNormal" style="font-family: "Times New Roman"; margin: 0in 0in 0.0001pt;">I’m still doing it. Anyone who has ever been to my house would laugh, but when it’s for someone else, I like it – the head-clearing satisfaction of sweeping crumbs off a surface, whisking cobwebs from corners, turning chaos into order. Leaving it all clean and tidy and closing the door before anyone comes in and trashes it (which is what happens in your own house of course, which is why cleaning your own house is different)</p><p class="MsoNormal" style="font-family: "Times New Roman"; margin: 0in 0in 0.0001pt;">It’s not what you would call a high status role, I know, and certainly not the best paid (though I get considerably more than a care worker), but at the age of sixty two when caring has been your main occupation, what exactly are you supposed to do? What career slot is just waiting for you to fit back into it? As an ex carer, the range of skills you will have is extraordinary, but what recruitment agency understands that? Where do you even start? Who understands in normal times, let alone during a pandemic?</p><p class="MsoNormal" style="font-family: "Times New Roman"; margin: 0in 0in 0.0001pt;">And so I take the pragmatic option, and clean, and do a bit of this and that and manage the unpredictability of freelance work, and I get by. And consider myself so fortunate. </p><p class="MsoNormal" style="font-family: "Times New Roman"; margin: 0in 0in 0.0001pt;">But life after caring is a wilderness, uncharted, map-less. You land bruised and confused in this new country, no longer sure of your identity. If you're the sole survivor of a Huntington's family then double, treble the sense of shock and confusion and loss of any certainty at all. You are Jason Bourne, only without the guns and the glamour. And throughout all this you are still recently bereaved and still grieving. And left to find your own way, and some of us manage, and some of us don’t, and you just have to hope that someone else who has been through the same thing will hold out an encouraging hand to help you through. I’m writing this to do just that thing, but also to remind myself that when Nick died I landed in new territory like Jason Bourne, having to reconstruct an identity with no idea of how or what to do next, and I’m still figuring it out, but I’m doing bloody well. And if you are reading this as an ex-carer trying to find your way, however difficult and painful it might feel, so are you. </p>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-846362513710961155.post-81207353041615987122020-08-09T14:27:00.000-07:002020-08-09T14:27:20.794-07:00The B Side of Love<p> ....I know exactly what I was doing this time last year. It was a Friday and I'd gone over to Nick's to spend an evening with him and make his dinner. Nothing special, actually there wasn't that much in the cupboards, but carefully assembled to feed him slowly so that he could swallow without a coughing fit. He fancied fish with mushy peas and for some reason I grated some cheese into the pea mash and started grinning to myself remembering The Fast Show and their Cheezy Peas sketch. I put a little quip about it on Twitter and got a snowstorm of responses. I told Nick why I was laughing but he didn't remember the show. He just wanted his dinner. Afterwards I thought, I wish it had been a nicer one. Something he absolutely adored, his very favourite - but how was I to know? </p><p>There wasn't a dinner the next day. A year ago tomorrow afternoon, he suddenly tipped backwards in his chair at the pub and died. And somehow a whole year has gone by, has gone so quickly - and over the last few months, so oddly. </p><p>I'm surprised at how emotional I am feeling, how tender. No regrets; we had spent so much time together and my only real regret was that it could have been more. But the sudden killer blow of loss is a thing that gets you at the weirdest moments, long after you would ever expect it. It stabs you in the heart, punches all the air out of your sails and leaves you winded. And it's a sad and uncomfortable feeling but at the same time as it should be. Grief is the B side of love, the side of the record you didn't plan to play. </p><p>I drove home last night listening to a CD of Nick's that we had last listened to together, and imagined him in the passenger seat so vividly that I wished I could tell him, oh I heard your voice so clearly today. Had a little cry. Felt better for it. </p><p>And all I want to say is this: if you are grieving, or missing someone, I am sorry. It's a pain like no other, or maybe no pain but an overwhelming dullness and lack of joy. It's horrible. And there is nothing much that anyone can do to help except to say, I hear you. And, believe it or not, that one day - maybe not now, but soon - you'll look up, and life will go on. </p><p><br /></p>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-846362513710961155.post-38263087863998540092020-07-14T04:56:00.000-07:002020-07-14T05:12:11.877-07:00This time last year...<div class="MsoNormal" style="font-family: Calibri, sans-serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;">
I have kept my diary for 2019 and every now and then look to see what we were doing this time last year. So much has changed since then that it almost feels like someone else’s life. It’s now eleven months since Nick died, and this time last year we were packing for him to go on holiday to Sandpiper’s in Southport. He was so looking forward to it.<o:p></o:p></div>
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We had bought him a new sponge-bag for his toothbrush and shaving things, and a very nice bottle of cologne. His radio, his little clock, his bibs and special sippy cup for his wine. I’d ironed his favourite shirts and sent exhaustive details of his medication and health issues to the medical team at the centre. He thought he might even try the hydrotherapy pool this time, so we'd packed an ancient pair of swimming trunks he probably hadn't worn for ten years.<o:p></o:p></div>
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Driving over the Snake Pass, we played some of his old favourite albums from boyhood – Dr Feelgood and Alex Harvey – and it was one of those truly happy times, that childish thrill of setting off for a holiday and singing along to favourite tunes with the car windows open and sun in our eyes. Being together having a craic, the way we always had. Being Nick, he was already wondering what they were going to give him for lunch and what time the bar would open. <o:p></o:p></div>
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I had no idea that he only had a few more weeks to live.<o:p></o:p></div>
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<span style="font-size: 12pt;">Fast forward a year and I get a lump in my throat from this photo. He was so happy. He went in the hydro pool every day and loved it - the freedom of being in water, weightless for once. Every time I look at my diary and see what we were doing last year, it's a wrench to the heart and I miss him. We all do.</span></div>
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<span style="font-size: 12pt;">But I’m still so very thankful that he missed all this. It would have been awful for him, already with a nasty rattle in his chest and struggling to eat or drink without choking. I would have self-isolated with him as so many brave souls have and continue to do, and it would have driven me round the bend, but so much worse for him. The lockdown; the fear; the isolation; the carers coming in visors and masks or not coming at all, because he would have been so vulnerable; the not being able to go to the pub or out to lunch, yet another one of his few pleasures taken away, and the heart-breaking stoicism he would have displayed throughout. As the rest of the world makes tentative steps towards normal, it’s easy to forget that thousands of families are still in this situation, even more closed off than they were before. Largely ignored by politicians, shamefully so. Invisible.</span></div>
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I can’t help doing a countdown of the days as we approach the anniversary of his so sudden death. Is that ghoulish? Or does everybody do it? Hard not to, when you have last year's diary marking out the passing time. </div>
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We will certainly mark the occasion; I thought perhaps a little socially distanced gathering in a local park, all drinking a spritzer in his memory. And it will also be a toast to all the carers out there, staying indoors and looking after their loved ones, somehow trying to keep safe and keep sane and treat each day together as the precious thing it is. <o:p></o:p></div>
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Unknownnoreply@blogger.comtag:blogger.com,1999:blog-846362513710961155.post-73018679819819835162020-03-20T05:50:00.002-07:002020-03-21T03:44:00.820-07:00House Arrest<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "tw cen mt";">I am so, so, so, so, so glad that Nick isn’t here today. Just thinking about it makes me go cold inside. Relying on carers to help him get washed and dressed and take his tablets morning and night and in between, needing those tablets delivered or picked up from the pharmacy, requiring frequent medical interventions from an array of different services, alarm pendant always round his neck to call out the emergency response team in case of accident, and he’d had a few of those – for someone whose body had long since put him under house arrest, he saw an awful lot of people in the average week.<o:p></o:p></span></div>
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<span style="font-family: "tw cen mt";">I wanted to do everything for him but it was impossible. There were a few periods when Simon and I tried to do all the care ourselves but we just couldn’t have managed it for long – his needs were so continual and complex, he was so heavy, so unwieldy, so accident prone, and still so determined to have some independence that it needed two people to help him in the bathroom and even the professional carers would struggle to stop him slipping.<o:p></o:p></span></div>
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<span style="font-family: "tw cen mt";">And there were so many of them. The council care provider promised to send the same team each week but that rarely happened. He might see 20 different carers in the space of a week, with new faces popping up all the time, or familiar ones he’d got used to suddenly disappearing.<o:p></o:p></span></div>
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<span style="font-family: "tw cen mt";">I used to rage as yet another new person let themselves in without ringing the bell, still munching a sandwich as they came in the door, said a brief hello without taking off their coat and then scattered the tablets out of the blister pack onto the mucky work surface to put by hand into Nick’s open mouth. Imagine that now. <o:p></o:p></span></div>
<div class="MsoNormal" style="font-family: "Times New Roman"; font-size: 12pt; margin: 0in 0in 0.0001pt;">
<span style="font-family: "tw cen mt";">All that human traffic. All the other people they were in contact with. Nick so vulnerable as his swallowing and ease of breathing were getting worse all the time. He took it all with such equanimity but if he were still here now I would be absolutely beside myself with worry.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="font-family: "Times New Roman"; font-size: 12pt; margin: 0in 0in 0.0001pt;">
<span style="font-family: "tw cen mt";">There were great carers too, of course, and these days I’m sure – I hope – they have better training: and what an amazing job they are doing just carrying on at all, going where angels fear to tread. Still keeping on and going out to work while the rest of the world is shutting down. For all the discomforts of self-isolating, it’s a luxury for those who can do it independently, or whose jobs don’t take them out of the house to go into someone else’s.<o:p></o:p></span></div>
<div class="MsoNormal" style="font-family: "Times New Roman"; font-size: 12pt; margin: 0in 0in 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="font-family: "Times New Roman"; font-size: 12pt; margin: 0in 0in 0.0001pt;">
<span style="font-family: "tw cen mt";">If you are highly at risk but totally dependent on another person to help you with the normal business of living, though? If all the people you would normally see are distancing themselves in order to protect you and themselves, if you are reducing or even stopping the number of care workers who come in and relying on a family carer, you are even more isolated than you already were. And what if that person you rely on becomes ill themselves?<o:p></o:p></span></div>
<div class="MsoNormal" style="font-family: "Times New Roman"; font-size: 12pt; margin: 0in 0in 0.0001pt;">
<span style="font-family: "tw cen mt";">It happened to me when I had a really bad flu the Christmas before last. Too poorly to move let alone look after Nick. Simon and a handful of other angels took over and luckily it was a slow period for breakages and other mishaps.<o:p></o:p></span></div>
<div class="MsoNormal" style="font-family: "Times New Roman"; font-size: 12pt; margin: 0in 0in 0.0001pt;">
<span style="font-family: "tw cen mt";">But it was one of the worst weeks of my life, delirious with fever and dark, hellish fears of what would become of us, of him, if this were to go on or if I got ill again. When you’re already chronically exhausted, as most family carers are, your health really suffers. It’s too bad though, when someone depends on you so completely there is simply no choice but to keep going. Other people can definitely take over in a crisis but for the sheer 360ness I’ve often talked about that being a primary carer involves, no-one else can easily do it all. That’s the trouble – you become co dependent. So being ill and unable to cope, especially if there is no dream team of angels to hand – it’s just too awful to think about. It is the carer’s worst nightmare.<o:p></o:p></span></div>
<div class="MsoNormal" style="font-family: "Times New Roman"; font-size: 12pt; margin: 0in 0in 0.0001pt;">
<span style="font-family: "tw cen mt";"><br /></span></div>
<div class="MsoNormal" style="font-family: "Times New Roman"; font-size: 12pt; margin: 0in 0in 0.0001pt;">
<span style="font-family: "tw cen mt";">I am writing this now from a different perspective, so thankful that Nick does not have to suffer, but with the memories still raw, s</span><span style="font-family: "tw cen mt"; font-size: 12pt;">cared and sad for all the people who are now having to do all this on their own. </span></div>
<div class="MsoNormal" style="font-family: "Times New Roman"; font-size: 12pt; margin: 0in 0in 0.0001pt;">
<span style="font-family: "tw cen mt";">Paid carers and frontline health workers with insufficient protective equipment (a doctor on the radio yesterday was saying that it's the equivalent of the wrong sort of boots supplied to British soldiers in Iraq) if they have it at all, and only the most sketchy contingency plans. Unpaid carers already at breaking point now trying to provide 24 hour support - in isolation, knowing that any pockets of outside support they do have may be withdrawn at any moment. It's a mess. </span></div>
<div class="MsoNormal" style="font-family: "Times New Roman"; font-size: 12pt; margin: 0in 0in 0.0001pt;">
<span style="font-family: "tw cen mt";">People are being extraordinarily kind and all the new connections springing up are hopeful and reassuring. When we stop being so busy for a minute, it turns out that we want to look out for each other. </span></div>
<div class="MsoNormal" style="font-family: "Times New Roman"; font-size: 12pt; margin: 0in 0in 0.0001pt;">
<span style="font-family: "tw cen mt"; font-size: 12pt;">But the thing about being very vulnerable or impaired is that you're already on lockdown and not really visible to the outside world, so for all the noble community help programmes, you might still get missed out. </span></div>
<div class="MsoNormal" style="font-family: "Times New Roman"; font-size: 12pt; margin: 0in 0in 0.0001pt;">
<span style="font-family: "tw cen mt";">Aside from demanding that frontline carers of all types get priority testing, if we learn anything from this situation it is that social care is something that sooner or later will affect everyone, and right now it's sooner. Underfunded, under acknowledged and poorly paid, the sector has been in crisis for years with the government wringing its collective hands but still looking the other way, and finally it cannot be ignored any longer. If any good can come out of this frightening time - and I think it will - then I hope it will involve the decision to put more money, more humanity and more dedicated attention into social care. </span><span style="font-family: "tw cen mt"; font-size: 12pt;">The time really is now. </span></div>
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<br /></div>
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<br /></div>
Unknownnoreply@blogger.comtag:blogger.com,1999:blog-846362513710961155.post-7837459460445524632020-02-03T02:25:00.002-08:002020-02-09T00:30:34.719-08:00The Bravest Thing I've Ever Done.<!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">I
am a huge physical coward. I climb carefully into the swimming pool down the
ladder and shudder at the idea of diving in. The very thought of bungee jumping
makes my stomach turn. I don’t cycle on the road any more because I’m scared of
traffic. But I did do a very brave thing, one of the bravest things that anyone
can do, when I took the test to see if I would develop Huntington’s Disease. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;"><a href="https://www.bbc.co.uk/news/av/stories-51310996/huntington-s-disease-i-m-taking-a-test-that-will-reveal-my-future" target="_blank">This</a>
is in the news today and it is ten times braver to do it in public with a
camera crew. A few years ago my friend Jaqui did the same on the <a href="https://www.bbc.co.uk/programmes/b09ntd0k" target="_blank">radio</a>. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">Their
courage is just astonishing.</span><span style="font-family: "tw cen mt"; font-size: 12pt;"> </span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">It
seemed a good time to share my story too, as I’m writing a memoir about my mum,
Nick, and how Huntington’s came into our lives. It’s still work in progress but
this is an excerpt about my decision to take the genetic test. I'm eternally grateful for the huge support that was around me at the time, and that for once in my life I did something really brave.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8rP4J1VAxGrVk3s9kPCMEd3B3nPWkmsC3RYUw_8Bh_eRhJKSFErYuU45lXjtBFsiZHY5Z_079_p5dxrbGPPQCJIPZkYO4DDyb7nLJEgnx0ANwuq-kXnas7WbceASrBW4JjmWYdyg8k2Q/s1600/IMG_7425.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8rP4J1VAxGrVk3s9kPCMEd3B3nPWkmsC3RYUw_8Bh_eRhJKSFErYuU45lXjtBFsiZHY5Z_079_p5dxrbGPPQCJIPZkYO4DDyb7nLJEgnx0ANwuq-kXnas7WbceASrBW4JjmWYdyg8k2Q/s320/IMG_7425.jpg" width="240" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "verdana"; mso-ansi-language: EN-GB; mso-bidi-font-size: 14.0pt;">“Nick
and I were having a beer, talking about Mum. The misery of her last few years,
how the illness had stolen her life.<o:p></o:p></span></b></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "verdana"; mso-ansi-language: EN-GB; mso-bidi-font-size: 14.0pt;"><span style="mso-tab-count: 1;"> </span>‘<i style="mso-bidi-font-style: normal;">If I thought this would ever happen to me, I’d
kill myself. Seriously, I would rather top myself than end up like that.’<span style="mso-spacerun: yes;"> </span><o:p></o:p></i></span></b></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "verdana"; mso-ansi-language: EN-GB; mso-bidi-font-size: 14.0pt;">He
had said this before, whenever our conversation danced around the one subject
that we could never quite properly talk about. But it won’t be you who ends up
like Mum, I privately thought, it’s going to be me. <o:p></o:p></span></b></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "verdana"; mso-ansi-language: EN-GB;">‘<i style="mso-bidi-font-style: normal;">None of us know what life is going to throw
at us,</i>’ goes the saying, but actually with a Huntington’s diagnosis you do
know. And it’s never good.</span><b style="mso-bidi-font-weight: normal;"><span style="font-family: "verdana"; mso-ansi-language: EN-GB; mso-bidi-font-size: 14.0pt;"><o:p></o:p></span></b></div>
<div class="MsoNormal">
<span style="font-family: "verdana"; mso-ansi-language: EN-GB;">When
you have a 50% chance of inheriting an incurable illness, the proverbial axe is
always poised over your head. Or maybe the Monty Python giant foot. I don’t
know if anyone not directly affected by something like this can really
understand the feeling. But I will try to explain.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "verdana"; mso-ansi-language: EN-GB;">You
are born with this built-in time bomb ticking away inside your body. And so are
we all, you may say, but unlike any other illness I can think of there’s a
world of difference between ‘<i style="mso-bidi-font-style: normal;">likelihood</i>’
and ‘<i style="mso-bidi-font-style: normal;">definite</i>’. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana"; mso-ansi-language: EN-GB;">It’s
not a predisposition that might be averted with careful lifestyle choices and
good luck. No surgery can remove the affected part. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana"; mso-ansi-language: EN-GB;">If
you have the HD gene you <i style="mso-bidi-font-style: normal;"><u>will</u></i>
develop the illness, the one you have already seen destroying your parent or
siblings, and it’s this inescapable repetition that is so nightmarish. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana"; mso-ansi-language: EN-GB;"><span style="mso-tab-count: 1;"> </span>So,
unless you are 100% sure that you will not inherit the HD gene, if it is in
your family then you are always wondering – Will it be me? And if you have
siblings, inevitably – what about them? <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana"; mso-ansi-language: EN-GB;">Well,
how can you think about that for long without driving yourself mad? <o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="font-family: "verdana"; mso-ansi-language: EN-GB;">If
you’re brave enough, you can take a predictive test that will analyse your DNA
from a blood sample. The test became available in the UK in 1993 and will
reveal whether or not you have inherited the genetic mutation in chromosome 4 </span><span lang="EN-US" style="font-family: "verdana"; mso-bidi-font-family: Times;">that causes
Huntington’s Disease.<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN-US" style="font-family: "verdana"; mso-bidi-font-family: Times;">The blood analysis will measure the repeat sequence of Cynosine, Adenine
and Guanine, three chemicals that form the building blocks for a person’s DNA.
In a “normal” person, these chemicals display a certain number of CAG repeats,
usually up to 35 times. <o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN-US" style="font-family: "verdana"; mso-bidi-font-family: Times;">Someone carrying the defective gene will have a much higher number of
CAG repeats – typically between 37 and 45, which is the inevitable marker for
the illness. <o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN-US" style="font-family: "verdana"; mso-bidi-font-family: Times;">Could a high number be a mistake, miscounted or misinterpreted by an
inexperienced lab technician? No. <o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN-US" style="font-family: "verdana"; mso-bidi-font-family: Times;">So that’s what the blood test will show – your number of CAG repeats.
Significantly higher than 35 and the HD gene is stamped through your DNA like
writing in a stick of seaside rock.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "verdana"; mso-ansi-language: EN-GB;">If
so, however young and healthy you are now, there is no escaping the disease. As
typically it doesn’t begin to manifest until mid-life, it can be hard to
believe that you are carrying this invisible time bomb. You can disown your
family, emigrate to Australia, call yourself a different name or have a sex
change. But if it has marked your card, it will come for you. No escape. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "verdana"; mso-ansi-language: EN-GB;">The
testing process is lengthy because this is clearly not a decision to be taken
lightly and there are staging posts along the way where you can discuss your
fears and back out at any point before actually taking the blood test. But do
you really want to know? It’s such a gigantic decision that many people don’t.<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN-US" style="font-family: "verdana"; mso-bidi-font-family: Times;">As a counsellor had said to Nick and me after Mum died, ‘<i style="mso-bidi-font-style: normal;">You are young – get on with your lives. Don’t
let this dominate you, who knows what could happen, you could live in fear of
Huntington’s and then get run over by a bus!</i>’ <o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none; text-indent: .5in;">
<span lang="EN-US" style="font-family: "verdana"; mso-bidi-font-family: Times;">Not the most cheering way of putting it, perhaps,
but it did the trick for us. For a while, anyway. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana"; mso-ansi-language: EN-GB;">Because
it is hard not to live with some level of fear. You do get on with life, other
things take centre stage and Huntington’s gets gradually shunted to the dark
corners that you don’t investigate too often.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana"; mso-ansi-language: EN-GB;">Living
with that knowledge in the back of your mind is like living under a shadow; it
soon becomes normal, disregardable, your eyes adjust so you forget it is there.
But nevertheless….<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "verdana"; mso-ansi-language: EN-GB;">And
as you get older and approach the age when it might begin, an undercurrent of
superstition starts to envelop everything you do. When you know it might be you
next, your whole being conspires to avoid properly thinking about it, even
though it’s all you do think about. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana"; mso-ansi-language: EN-GB;">Generations
of families can be affected in this way, knowing exactly what’s going on but
not talking about it. Watching. Dealing with the fall-out of early symptoms,
which can range from a slight tic to hyper-mania, car accidents, obsession,
crazy spending and sudden violent rages – but somehow not acknowledging it as
the onset of HD. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana"; mso-ansi-language: EN-GB;">Even
when you are actively looking out for the symptoms.<span style="color: blue;"> </span>You
know they’re there and in hindsight it’s so obvious, but it’s as if your brain
simply cannot acknowledge the significance. It’s a weird paradox. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana"; mso-ansi-language: EN-GB;">Whole
families become experts in denial because the reality is just too overwhelming
to face. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "verdana"; mso-ansi-language: EN-GB;">So
you can read up about the illness and genetic science. You can campaign, you
can talk about HD and do fundraising ‘til the cows come home but when you or a
loved one are at risk yourselves, there’s always a tender nerve inside that you
avoid going too near. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana"; mso-ansi-language: EN-GB;"><span style="mso-tab-count: 1;"> </span>Is
this it? This twitchy eye, that dropped plate – is this the onset of Huntington’s?
You worry about that all the time and yet when the evidence is actually there
you can’t seem to see it. It’s the permanent elephant in your living room that
you just can’t look at directly, however many times you have to walk around it.
<o:p></o:p></span></div>
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<span style="font-family: "verdana"; mso-ansi-language: EN-GB;">I
was like that for years, and then one day I just got tired and booked myself in
for the test."</span><span lang="EN-US" style="font-family: "verdana"; mso-bidi-font-family: Times;"><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<!--EndFragment--><br />Unknownnoreply@blogger.comtag:blogger.com,1999:blog-846362513710961155.post-47533343998246804492020-01-12T06:09:00.000-08:002020-01-13T02:38:02.605-08:00Happy Birthday<!--[if gte mso 9]><xml>
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<span style="font-family: "tw cen mt" , sans-serif; mso-ansi-language: EN-GB; mso-bidi-font-family: "Times New Roman \(Body CS\)";"><i>'<u>January 11th.</u></i> </span><i style="font-family: "Tw Cen MT", sans-serif; font-size: 12pt;">It’s Nick’s birthday and
we’re driving north and going out to lunch with his ex wife and his kids, at a
place he used to like when he lived in County Durham.</i></div>
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<span style="font-family: "tw cen mt" , sans-serif; mso-ansi-language: EN-GB; mso-bidi-font-family: "Times New Roman \(Body CS\)";"><i>I’ll order a white wine
spritzer in a long glass and we’ll raise a toast in his honour. He just won’t
be here in person. <o:p></o:p></i></span></div>
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<span style="font-family: "tw cen mt" , sans-serif; mso-ansi-language: EN-GB; mso-bidi-font-family: "Times New Roman \(Body CS\)";"><i>A year ago today I took
him out to an Italian café where he insisted on ordering spaghetti. I watched
him struggling from across the table, trying so hard to not rush to his rescue but
let him have a chance at independence, until he asked, ‘Will you help me?’ <o:p></o:p></i></span></div>
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<span style="font-family: "tw cen mt" , sans-serif; mso-ansi-language: EN-GB; mso-bidi-font-family: "Times New Roman \(Body CS\)";"><i>I was used to doing this
discreetly, leaning over to cut up or mash the food on his plate to make it easier
for him to eat by himself, where possible prompting him to order things that he
could eat by himself without too much fuss. Unfortunately, he really liked spaghetti
and noodles and he was a stubborn so- and-so, always had been.'<o:p></o:p></i></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0FHP4uAawMOLopj3bw206qzeR-hcansqAYcfWt0AvOTK00xqLtDufuDw67IC-TFAA9QS3oa1LyfCBEpYRvxsuGdUTDkMqGKK4mPBQLTmSJxBDHgTBhLAyrKbUQ4yNdLgMgeAnY1kAiF0/s1600/20200111_141009.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0FHP4uAawMOLopj3bw206qzeR-hcansqAYcfWt0AvOTK00xqLtDufuDw67IC-TFAA9QS3oa1LyfCBEpYRvxsuGdUTDkMqGKK4mPBQLTmSJxBDHgTBhLAyrKbUQ4yNdLgMgeAnY1kAiF0/s320/20200111_141009.jpg" width="240" /></a></div>
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<span style="font-family: "Tw Cen MT", sans-serif;">I love the drive up the A1, watching the skies gradually widen away from the cities, Nick with me on the passenger seat as a plastic tub of ashes in a Christmas bag but also in spirit. The times I’d driven to see him when he lived up there, the times he’d been beside me on those country roads ending out of Durham and through one of the landscapes I love most in life. He was there in the road and the trees and the music on the CD player (David Bowie, of course, who died on Nick’s birthday) and the huge rainbow suddenly stretching right across the sky as we came towards Consett. At the pub, waiting for the others to arrive, I sipped at the spritzer, Nick still beside me, and raised a silent toast. The wine came in a stemmed glass; Nick would have knocked that over in seconds flat, but that was then and this is now, a small concession to our changed circumstances. The music in the pub was astonishing, though, all his favourite songs, almost as if they had known. He'd have just loved it. </span></div>
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<span style="font-family: "Tw Cen MT", sans-serif;">Later, sitting around the table with Nikki and the children, w</span><span style="font-family: "tw cen mt", sans-serif; font-size: 12pt;">e talked about the great party he'd had for his birthday last year, how many people had come, all the cards and presents and food and what fun it had been. The expression on Nick's face when he saw George and Elene walk through the door, surprise guests of honour. I knew things were changing and that the effects of the illness were getting worse, but none of us could have guessed that he wouldn't be here now to celebrate another year. Well - not here in person. </span></div>
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<span style="font-family: "tw cen mt" , sans-serif; font-size: 12pt;">We have not yet decided what to do with his ashes so his children are taking them home for a while to think. Maybe under a tree in some beautiful woodland glade, maybe scattered to the four winds by the sea (I've kept some back to do this in the peak district) but what matters is, we are keeping his spirit close. It's always there, he's always with us, it's just different. </span></div>
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</style>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-846362513710961155.post-79041160721389804222019-12-26T12:03:00.000-08:002019-12-26T12:05:23.113-08:00Happy Sad Memories<!--[if gte mso 9]><xml>
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<span lang="EN-US" style="font-family: "tw cen mt"; font-size: 14.0pt;">We spent Christmas
at my in-laws, who are some of my favourite people in the world. Being with
them is like a home from home. So why did I wake up on Christmas morning with a
stone in my chest and the most indescribable sense of loss? Needing to fetch
the heavy plastic tub from its box under the tree and sit cuddling it, bereft.
It’s all that’s left of Nick in physical form. I know he’s gone. I know it’s
ridiculous. It was probably pretty ridiculous to take him with us in the first
place to spend Christmas together, but he loved Christmas and I wasn’t going to
leave him on his own. This was the first one without him </span><span style="font-family: "tw cen mt"; font-size: 14pt;">in the world since I
was four, and grief makes you irrational. </span></div>
<br />
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "tw cen mt"; font-size: 14.0pt;"><br /></span></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHG_kTrCsechW8_gB0YcnB9uv1K4H93CcwODYfJRnOtkOpYYGnGGYaAJAhklU1DHyWzh16neCNEublTerIBUEaIgXMzHpa7B16P9XoL7JPv9hTwaN-PFQNyxT8Rf2Hl6KtWD_A8qODkcI/s1600/20191225_115819.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHG_kTrCsechW8_gB0YcnB9uv1K4H93CcwODYfJRnOtkOpYYGnGGYaAJAhklU1DHyWzh16neCNEublTerIBUEaIgXMzHpa7B16P9XoL7JPv9hTwaN-PFQNyxT8Rf2Hl6KtWD_A8qODkcI/s400/20191225_115819.jpg" width="300" /></a></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN-US" style="font-family: "tw cen mt"; font-size: 14.0pt;"><o:p><br /></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN-US" style="font-family: "tw cen mt"; font-size: 14pt;">I’m also aware that
he was so lucky to go when he did, and how hard things might have been by now,
how difficult he was finding it to do so many things, and starting to dread the
prospect of eating when all his life he’d been such a foodie.</span><span style="font-family: "tw cen mt"; font-size: 14pt;"> </span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="font-family: "tw cen mt"; font-size: 14pt;">It made me think of all
previous Christmases we’d had and their changing choreography as his illness
began to manifest. This one I remember in particular because Nick was still
living in his house in the north east and relatively independent – or so I had
thought. </span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="font-family: "tw cen mt"; font-size: 14pt;">Just four years ago. I wrote about it in my diary and it’s part of the memoir I’m writing
about Nick and Huntington’s and how it affected our family. It was one of those
near disasters where you end up having such a good time that it becomes one of
the best times. It still makes me smile.</span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<i style="mso-bidi-font-style: normal;"><u><span lang="EN-US" style="font-family: "tw cen mt"; font-size: 14.0pt;">Christmas 2015<o:p></o:p></span></u></i></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<i style="mso-bidi-font-style: normal;"><span lang="EN-US" style="font-family: "tw cen mt"; font-size: 14.0pt;">It was Nick’s turn to have the children with him
for the few days after Christmas. We arranged to have a second Christmas with
him and the kids, </span></i><i style="font-size: 12pt;"><span lang="EN-US" style="font-family: "tw cen mt"; font-size: 14.0pt;">travelling straight up north after being at Simon’s
mum’s. Nick said he would cook a turkey and to leave it to him. I must have
been a wee bit doubtful but he’s been coping so well lately. Trouble is, while
always watching out for change, I don’t seem to see it until it’s too hard to
ignore.</span></i></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; tab-stops: 67.45pt; text-autospace: none;">
<i style="mso-bidi-font-style: normal;"><span lang="EN-US" style="font-family: "tw cen mt"; font-size: 14.0pt;"><span style="mso-tab-count: 1;"> </span>We
drove up north on the day after Boxing Day. There had been dreadful floods throughout
Yorkshire and the north west and as we crawled slowly up the A1 we saw half
submerged trees in what had been fields and were now lakes. By the time we
arrived we were hungry. Simon’s mum can never let us go without at least one
bag full of cake, fruit, cheeses she has got in specially, whatever they won’t
be eating now the guests are leaving, so we were laden with goodies: mince
pies, home-made cranberry sauce, left over roasties and some little cocktail
sausages. And a stick of sprouts, some carrots and a bottle of fizz. Nick had
said he would provide everything else so we just needed to bring ourselves and
whatever we were drinking. Finally we knocked at the door. There was great
excitement to see each other and the children immediately tore into their
presents while we opened the wine. Something was missing though – what? Oh, yes
- where was that background hum of the delicious scent of roasting meat? (This was just before I turned vegan...)<o:p></o:p></span></i></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; tab-stops: 67.45pt; text-autospace: none;">
<i style="mso-bidi-font-style: normal;"><span lang="EN-US" style="font-family: "tw cen mt"; font-size: 14.0pt;"><span style="mso-tab-count: 1;"> </span>‘<span style="mso-bidi-font-style: italic;">Shall I help you get the dinner on?’</span>
I asked Nick.<o:p></o:p></span></i></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; tab-stops: 67.45pt; text-autospace: none;">
<i style="mso-bidi-font-style: normal;"><span lang="EN-US" style="font-family: "tw cen mt"; font-size: 14.0pt;"><span style="mso-tab-count: 1;"> </span>‘<span style="mso-bidi-font-style: italic;">OK Sis</span>.’ <o:p></o:p></span></i></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; tab-stops: 67.45pt; text-autospace: none;">
<i style="mso-bidi-font-style: normal;"><span lang="EN-US" style="font-family: "tw cen mt"; font-size: 14.0pt;">We went into the kitchen. <o:p></o:p></span></i></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; tab-stops: 67.45pt; text-autospace: none;">
<i style="mso-bidi-font-style: normal;"><span lang="EN-US" style="font-family: "tw cen mt"; font-size: 14.0pt;"><span style="mso-tab-count: 1;"> </span>‘<span style="mso-bidi-font-style: italic;">Where’s your turkey, Nick?</span>’<o:p></o:p></span></i></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; tab-stops: 67.45pt; text-autospace: none;">
<i style="mso-bidi-font-style: normal;"><span lang="EN-US" style="font-family: "tw cen mt"; font-size: 14.0pt;">He fumbled in the fridge for what seemed a very
long time and then produced a small cardboard package. Inside was a frozen turkey
roll, clearly labeled as ‘<span style="mso-bidi-font-style: italic;">Serves 2
people.</span>’ There were six of us. <o:p></o:p></span></i></div>
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<i style="mso-bidi-font-style: normal;"><span lang="EN-US" style="font-family: "tw cen mt"; font-size: 14.0pt;">Simon came in, ravenous after the drive and wanting
to get dinner started.</span></i><span lang="EN-US" style="font-family: "tw cen mt"; font-size: 14.0pt;"><span style="mso-tab-count: 1;"> </span>‘<i style="mso-bidi-font-style: normal;">Shall we put the bird in the oven then Nick</i>?’<span style="mso-spacerun: yes;"> </span><i style="mso-bidi-font-style: normal;">He
didn’t notice my frantic eyebrow wiggling and grimacing.<o:p></o:p></i></span></div>
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<i style="mso-bidi-font-style: normal;"><span lang="EN-US" style="font-family: "tw cen mt"; font-size: 14.0pt;">Nick
looked a bit shifty. He started twiddling knobs on the cooker while I rummaged
in the cupboards to put the roll – looking smaller all the time – on a roasting
tray</span></i><span lang="EN-US" style="font-family: "tw cen mt"; font-size: 14.0pt;">. </span><i style="mso-bidi-font-style: normal;"><span lang="EN-US" style="font-family: "tw cen mt"; font-size: 14.0pt;">Nick fiddled about some more with the dials. Then –<o:p></o:p></span></i></div>
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<i style="mso-bidi-font-style: normal;"><span lang="EN-US" style="font-family: "tw cen mt"; font-size: 14.0pt;"><span style="mso-tab-count: 1;"> </span><span style="mso-spacerun: yes;"> </span>‘<span style="mso-bidi-font-style: italic;">It’s
not working at the moment.’</span><o:p></o:p></span></i></div>
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<i style="mso-bidi-font-style: normal;"><span lang="EN-US" style="font-family: "tw cen mt"; font-size: 14.0pt;"><span style="mso-tab-count: 1;"> </span><span style="mso-bidi-font-style: italic;"><span style="mso-spacerun: yes;"> </span>‘Oh-kayyyy…what about the microwave?’</span> Another long
silence.<o:p></o:p></span></i></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; tab-stops: 67.45pt; text-autospace: none;">
<i><span lang="EN-US" style="font-family: "tw cen mt"; font-size: 14.0pt;"><span style="mso-spacerun: yes;"> </span>‘That’s
broken.’<o:p></o:p></span></i></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; tab-stops: 67.45pt; text-autospace: none;">
<i style="mso-bidi-font-style: normal;"><span lang="EN-US" style="font-family: "tw cen mt"; font-size: 14.0pt;">I’m honestly not making this up. In his mind he was
going to cook a turkey banquet for six people, even though what he actually had
was a tiny frozen ready meal thing and no oven or microwave. There was no point
in getting exasperated, we were way beyond that. We would have to improvise. <o:p></o:p></span></i></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; tab-stops: 67.45pt; text-autospace: none;">
<i style="mso-bidi-font-style: normal;"><span lang="EN-US" style="font-family: "tw cen mt"; font-size: 14.0pt;">I cut the turkey roll into shreds with a pair of
scissors and we put it in a pan to fry with some onions and then added the
sausages. We made bubble and squeak in another pan with the leftover roasties,
chopped the carrots raw into sticks, and the kids persuaded us to forget about
the sprouts altogether. Meanwhile, the adults opened another bottle. There was
lots of food to go round and it was all delicious. And in the end, much more
fun. We had to work together and pull what could have been a disaster into a
good time – the stuff that often makes a family gathering memorable, especially
at Christmas. And Nick was the host with the most. But I think we need to look
at some home help for him in the New Year before someone gets poisoned.’ <o:p></o:p></span></i></div>
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<br /></div>
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</style>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-846362513710961155.post-51893466196939345592019-12-10T03:07:00.000-08:002019-12-10T03:07:59.357-08:00Last Christmas, I gave you my heart<!--[if gte mso 9]><xml>
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<span style="color: black; font-family: "tw cen mt"; mso-ansi-language: EN-GB; mso-bidi-font-size: 13.5pt;">...and I won't ever get it back, but
that's OK. We were brother and sister for five decades, nothing can change
that, and your memory will always be with me. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: black; font-family: "tw cen mt"; mso-ansi-language: EN-GB; mso-bidi-font-size: 13.5pt;">Memory is a funny thing, though –
yesterday I was inconsolable because I’d just idly wondered what we were doing
this time last year, then realised that I’d got rid of my 2018 appointment diary and
also yours. The reminder of all those medical and social service appointments;
ears, eyes, skin, teeth, hands and feet and bumpsadaisy, there wasn’t a bit of you
that didn’t have a problem and someone trying their best to fix it; the waiting
in for wheelchair repair and every other repair under the sun; meetings
with management of the awful care agency, always promising but never delivering; </span><span style="font-family: "tw cen mt";">the council officer and </span><span style="font-family: "tw cen mt"; font-size: 12pt;">police calls about the upstairs neighbour; the shopping and the schlepping and the fun things too, your lunches with Helen and Sophie and me and the
cinema and your boys’ night out with Simon at the pub. </span></div>
<div class="MsoNormal">
<span style="color: black; font-family: "tw cen mt"; mso-ansi-language: EN-GB; mso-bidi-font-size: 13.5pt;">I couldn’t bear the reminders of all the
bad stuff; we’d already lived it for too long. But I’m sad to forget some of
those little things, though maybe they never really leave but are always there in
the close weave of our souls. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="color: black; font-family: "tw cen mt"; mso-ansi-language: EN-GB; mso-bidi-font-size: 13.5pt;"><o:p><br /></o:p></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-iOjzYsj0gNkqm8UOnXa1b9FCUfjij1WSf_VYaf0Mgk7oUq_CHhkwBNiZ_KTJhWOkojnSyFaxrEbQdS2rBhcTcxMBabSzp_80nbWUxQStopFCjfPLEIZdwQ9dSPu8Vr4TUYLfPA7i5BY/s1600/Unknown.jpeg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-iOjzYsj0gNkqm8UOnXa1b9FCUfjij1WSf_VYaf0Mgk7oUq_CHhkwBNiZ_KTJhWOkojnSyFaxrEbQdS2rBhcTcxMBabSzp_80nbWUxQStopFCjfPLEIZdwQ9dSPu8Vr4TUYLfPA7i5BY/s400/Unknown.jpeg" width="225" /></a></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; font-size: 12pt;">We went to two carol concerts, that I
remember, about this time last year. Both of which we had to jump ship halfway through because you were so
uncomfortable. Being in a confined, unfamiliar space was very hard for you to
manage, even in the wheelchair that you said was your most comfortable place
anywhere. We’d both stopped caring if people stared as you jerked and rocked
and shuffled about, but now the Christmas spirit had arrived and</span><span style="font-family: "tw cen mt"; font-size: 12pt;"> </span><span style="font-family: "tw cen mt"; font-size: 12pt;">people were kind. You loved the craic, the
decorations and festive air, and you certainly enjoyed the mulled wine and
snacks.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: black; font-family: "tw cen mt"; mso-ansi-language: EN-GB; mso-bidi-font-size: 13.5pt;">All this stays with me in my bank of
treasured memories. We never imagined that you wouldn’t be doing the same thing
with us this year, and I’m still getting used to you not being here. I wouldn't want to put the clock back and see you getting worse and more uncomfortable all the time, maybe not even wanting to or able to go out much. We have a lifetime of memories and good times to look back on, and you definitely quit while you were ahead. It's just a funny time for the ones you left behind. </span></div>
<div class="MsoNormal">
<span style="color: black; font-family: "tw cen mt"; mso-ansi-language: EN-GB; mso-bidi-font-size: 13.5pt;">But don't worry. It’s Ok –
just strange. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="color: black; font-family: "tw cen mt"; mso-ansi-language: EN-GB; mso-bidi-font-size: 13.5pt;"><br /></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<!--EndFragment--><br />Unknownnoreply@blogger.comtag:blogger.com,1999:blog-846362513710961155.post-84830102705719127942019-11-21T00:31:00.002-08:002019-11-21T00:31:34.879-08:00Carers' Rights. Human Rights.
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<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; mso-ansi-language: EN-GB;">Carers’
Rights Day doesn’t stop being important for me now that I’m an ex carer.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; mso-ansi-language: EN-GB;">Here
I am typing in my pyjamas at 8pm, knowing that there’s no reason to have to
rush out again to Nick, or to feel guilty that I am just tootling around at
home rather than spending time with him. Increasingly I couldn’t bear to think
of him alone, not just in case he was lonely but because of the very real array
of possible danger – from choking, falling, being given the wrong medication or
reacting badly to the right one, to malicious damage by the nutter upstairs –
all things that could and already had happened without me there to protect him.
<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; mso-ansi-language: EN-GB;">Nick
had become as helpless as a small child, relying entirely on help from me,
Simon and the council carers just to be able to get out of bed and sit in his
chair to watch TV. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; mso-ansi-language: EN-GB;">I
don’t have to worry about these things any more. The constant worrying about
him and is he safe, the fretting about the carers who could never bloody turn
up on time or be relied on to get the right meds dosage or lock the door behind
them, let alone wipe down his table or give him the food I’d carefully cooked,
pureed and left labelled in the fridge. The endless onslaught of bills and
benefit reassessments and constant breakages, never knowing what was going to
go wrong next. The laboured text at 11pm, “<i style="mso-bidi-font-style: normal;">Sis,
I have broken my television / bed / chair…</i>”, the sudden call from the alarm
service, the completely unexpected rush to A&E. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; mso-ansi-language: EN-GB;">Life
is still unpredictable but I don’t have to carry these worries like a giant
constant weight round my shoulders any more. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; mso-ansi-language: EN-GB;">Since
Nick died, I’ve learned to relax into an expansiveness that I couldn’t even
imagine a few months ago because it didn’t seem possible, at least the only way
it would be possible would be this, if he was gone, and my brain couldn’t
compute that. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; mso-ansi-language: EN-GB;">Carers
live two lives all day and every day, managing the needs of another person as
well as their own. That means nurse, cook, dietician, chauffeur and travel
agent, housekeeper, stockbroker, medical specialist, virtual assistant, advocate,
benefits expert, launderer, scribe, punchbag, ongoing lifeline and all-purpose
trouble-shooter when things go wrong. And it means developing a rhino thick
hide that will not be dented by the sling and arrows of outrageous fortune as
you battle intransigent bureaucracy and talk-to-the-hand jobsworths, because
carers soon find out that another giant chunk of their time is taken up
fighting for what you might think would be the basic rights of a vulnerable
person who can’t speak up for themselves. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; mso-ansi-language: EN-GB;">I
don’t want to sound chippy because in theory we still have a welfare state that
looks after the frail and disabled. But navigating your way through that takes
some strength, and carers get used to having to talk to the hand again and
again and again until the message gets through, for the sake of the person
they’re looking after. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; mso-ansi-language: EN-GB;">Becoming
a carer for someone you love can happen so quickly that you hardly know what’s
hit you, and it can happen to anyone. It’s the hardest thing I have ever done.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; mso-ansi-language: EN-GB;">Then
of course there is the navigation through all the bureaucratic knots and
tangles when that person dies, especially if it was unexpected. I’m still
wading through that but as an executor of the estate of the deceased, no longer
“Carer”.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; mso-ansi-language: EN-GB;">What
am I, though? Being an ex carer is odd; I’m still getting used to it. The new
freedom is a gorgeous thing but it’s unfamiliar too and I am sorry to say that
there are very few resources for someone who suddenly stops being a carer. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; mso-ansi-language: EN-GB;">No
P45. No gold watch for faithful service. No rehabilitation. No bereavement
network, no employment support, no steady ground under your feet. Carers’
Allowance mercifully continues for 8 weeks after someone dies but everything
else stops dead too and that’s that. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; mso-ansi-language: EN-GB;">Some
people have known nothing else but their caring role; how are they supposed to
find their way in a world that barely recognised them while they were actively
being a carer, let alone now? When the financial constrictions of caring, which
have STILL not been addressed by any politician I’ve come across from any
party, leave most carers unable to save even if they can work alongside their
role, while what savings they might have had are drained by the constant
erosion of buying disability equipment and specialist goods and all the other
seemingly small things that add up to a lot. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; mso-ansi-language: EN-GB;">I’ve
been bailing Nick out for the last ten years in dribs and drabs and it adds up
to a lot. It was the price of love. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; mso-ansi-language: EN-GB;">This
has happened to me the year I turn 60 - too young to retire but with no foothold
back into the ‘real’ world, I’m still blinking in the sunlight like a newly
released prisoner who doesn’t know what to do. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; mso-ansi-language: EN-GB;">Yes,
I’m worried about the future and I need an income but if caring has taught me
anything it’s to be resourceful. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; mso-ansi-language: EN-GB;">And
angry, if you want to know. Why are unpaid carers still not properly recognised
for the work they do and the contribution they make to our economy, the
billions they save the state? The current Carers’ Allowance is a mockery as it doesn’t
align with the new Living Wage and no-one at HMRC seems to have done their sums
about this, or give a toss. </span></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; mso-ansi-language: EN-GB;">Why have we not heard a single politician standing
up for carers as they present their election promises? Why is there no support
for former carers who are presumably expected to fit neatly back into a world for
maybe years has pretended they don’t exist? <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; mso-ansi-language: EN-GB;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; mso-ansi-language: EN-GB;">On
Carers’ Rights Day this year, I’m not a carer any more but I still think like
one. And we deserve better. Please, don't think that because it doesn't affect you it doesn't matter. Sooner or later most of us will need care or be carers. </span><span style="font-family: "Tw Cen MT"; font-size: 12pt;">Don't turn a blind eye now. </span></div>
<div class="MsoNormal">
<span style="font-family: Tw Cen MT;">You can join the We Care campaign (@WeAreCarers) with a click of a mouse, you can vote for a politician who cares about social care, </span><span style="font-family: "Tw Cen MT"; font-size: 12pt;">and yes, you can share this message. </span></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; font-size: 12pt;">Thank you.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<!--EndFragment--><br />Unknownnoreply@blogger.comtag:blogger.com,1999:blog-846362513710961155.post-6226598650421746592019-11-20T10:52:00.001-08:002019-11-20T10:52:21.417-08:00Secrets and LiesImagine you're a doctor whose patient has a rare but deadly hereditary illness which will be passed on to their children. Until your diagnosis, the patient and his family had never even heard of the illness, but it's something so terrible that the patient makes you promise not to tell his pregnant daughter in case the news drives her to suicide.<br />
When the daughter does find out she may inherit this illness, she tries to sue you and the health authority, saying that she would have had an abortion if she'd known.<br />
Sounds like a slightly far fetched plot from one of those TV hospital dramas, doesn't it. Unfortunately not.<br />
<a href="https://www.bbc.co.uk/news/health-50425039" target="_blank">This sad story</a> has been in the news this week. Believe me, the circumstances might seem extreme but the basic story line is just a variation on a well-known theme for families affected by Huntington's.<br />
If you have any kind of close knowledge of HD you will probably nod in sympathy but not feel at all surprised. Because - what would <i>you</i> do?<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFEJCYlUx9P78OAzslqhKM8KQNfZty2IJx3_YPToe59-csWB5M6LaAxFS3ftZUqsGBUhhPmiielx2SNhJ1dE_Aq5hJX7nYprH-T00pp4XdZ7M1DCSw-K1Vve7hZ-DWxsgKEm5eD6eDUmg/s1600/20191120_173644.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1475" data-original-width="1600" height="294" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFEJCYlUx9P78OAzslqhKM8KQNfZty2IJx3_YPToe59-csWB5M6LaAxFS3ftZUqsGBUhhPmiielx2SNhJ1dE_Aq5hJX7nYprH-T00pp4XdZ7M1DCSw-K1Vve7hZ-DWxsgKEm5eD6eDUmg/s320/20191120_173644.jpg" width="320" /></a></div>
<br />
I wonder if you can begin to imagine the secrets and lies and the pussyfooting around that go on in a family where someone has Huntington's. It's not like any other illness; if someone in the family has it, then someone else will too, and the next generation - no buts nor ifs, it's just a question of who, and when. Not everyone can handle it. There's a dramatically higher rate of suicide than with other long term medical or neurological conditions, while suicidal thoughts increase exponentially for people expecting a positive diagnosis. No-one wants to rock that boat for someone they love. It can be easier not to talk about it, just bury your suspicions and pretend it's not happening, and many families do; I'm sorry to say that ours was one of them.<br />
<br />
That's Mum, Dad and Nick in the picture - Mum in the early days of her illness but pre-diagnosis.<br />
<br />
She'd been gone a good fifteen years or more when my brother started getting into financial trouble and couldn't seem to pick up a cup without dropping it, and had pranged his car yet again. At first we didn't want to believe it but we watched...watched the minute little jumps of his leg next to mine on the settee and the repetitive kick of his foot, heard the odd new catch in his voice. We couldn't be sure it was the onset of Huntington's but the signs were all there. I thought it but I couldn't voice it, and when my dad and I finally did say it out loud to each other we both agreed we were afraid to say anything in case it tipped Nick over the edge.<br />
He was so low at the time and had always said that if he ever thought he was showing early signs of the dreaded illness, he would jump off a bridge. Or drive his car into a wall, late at night. He had said all along that he would kill himself rather than end up like our mum. What were we to do, call his bluff? So we watched, and waited, and read the books and did our research but didn't say anything to the person we loved so much because we were so afraid of what he might do. I hated myself for it but also knew just how stubborn Nick could be, and what a capacity he had for self destruction.<br />
We all lived in different cities apart from each other but we were all tiptoeing around the same elephant in the room for three whole years.<br />
<br />
The saddest thing was that when Nick finally put two and two together and acknowledged to himself what was happening, he felt relief. And now he knew, he didn't want to kill himself, he wanted to live. But he also wondered why, if the signs had been there, no-one had said anything.<br />
And I had to tell him that I had been afraid of his mental state and just hadn't dared to broach what was, either way, a death sentence.<br />
<br />
Now Nick is gone, and with no HD marker in my DNA to pass on to my son, I've got no direct line to Huntington's, but it still affects everything. I hear stories like this in the news and feel like a Greek chorus commenting from the wings, wondering what I would have done in that situation, or what I could have, should have done differently with Nick. His children are growing up, and at risk. They've seen what happened to their dad and read this blog, but they also need to get on with their lives and studies and their own hopes and dreams, and for a few years concentrate on those.<br />
<br />
But what should families say to each other? How do we talk about this most difficult of subjects? I still don't know how we would have done things differently with Nick in the circumstances, but if you know you have Huntington's in your family then my belief is that you have to say something.<br />
It's not the absolute end of the road. None of us wish an illness like that for ourselves or our loved ones, but gene positive or no, we should live the fullest life we can with the health and resources we've got, and if you do know you're going to develop the illness then now is the time to just carpe the bejaysus out of the blessed diem. But that's easy for me to say, isn't it?<br />
<br />
<br />
<br />Unknownnoreply@blogger.comtag:blogger.com,1999:blog-846362513710961155.post-51703532146717515792019-09-28T02:20:00.000-07:002019-09-28T02:20:36.504-07:00Life After CaringSix weeks have passed and Nick is still gone.<br />
I've already got used to having more time, more freedom, more space in my day and my head.<br />
The to-do list looks different: "<i>Buy coffee</i>" "<i>Check car insurance</i>" and even "<i>take library books back</i>" but there are also bills to be paid and a foreboding pile of probate forms to fill in with the required documents - birth, death, marriage and divorce certificates, inner leg measurement, IQ and shoe size.<br />
Boxes of his things are piled up in my room and await sorting out. Diaries, letters, bits and bobs of memorabilia, pens and badges and old concert tickets. They will continue to sit there until I can face it, which isn't just yet.<br />
<br />
It's Saturday morning and the physical memory of our Saturdays still tugs at me - I'd get his i newspaper from the shop up the road and then walk down to the flat. The carers used to come in early at weekends to dress and give him breakfast and he'd often have gone back to bed so I'd come in, put the kettle on and wake him up with hot coffee and a crisp new paper.<br />
Saturdays are different now. The familiar path I took then and every day, several times a day, is no longer mine to walk.<br />
I don't miss it and that surprises me, but approaching the door there was always a feeling of dread alongside the love and devotion for Nick - what was I going to find when I walked into the building?<br />
So it is a great relief not to have that worry all the time. I'm gradually stretching in to the new expansiveness of it. But I miss him.<br />
<br />
On that first frozen Saturday evening when we went to the flat to feed Smokey, the first thing we saw were his poor misshapen slippers, just kicked across the room where he'd taken them off before going out to his last lunch. My Christmas present from last year: stained blue corduroy with the stuffing leaking out from his perpetual chafing and scuffing, due to be replaced - or so I thought.<br />
I can't bear to throw them away just yet.<br />
<br />
His favourite stripy jumper, washed thin and holey, is mine now and it still smells of him. I don't want to wear it all the time but I do think there is a need for a "grief wardrobe" (again, the Victorians knew a thing or two) where you are allowed and encouraged to wear your dead loved one's clothes like spirit arms to wrap around you. And fairy tales knew this too, this need to warm your bones with the loved one's scent.<br />
<br />
Anyway, we go on. I'm so glad that we no longer have to worry about the carers, about the availability of medications post Brexit, about whether the medications were right in the first place and if he was taking too many, about the increased coughing and choking and continence fails, about the horrible neighbour, about all the little big things that added up to daily anxiety and stress.<br />
I'm glad he has not had to suffer further indignities and that he finally felt so lucky and loved.<br />
But I miss him.Unknownnoreply@blogger.comtag:blogger.com,1999:blog-846362513710961155.post-68397733969576195892019-09-13T03:02:00.003-07:002019-09-13T03:10:44.793-07:00Sorry For Your LossBereavement is another country, a place you didn't plan to go to. Even if you have been here before - and I have, so many times. You'd think a person would get used to it.<br />
But you find yourself in this parallel universe of bereavement as dazed as if dropped from a great height. You've been here before but each time the landscape is a little different and the language of this country changes too, as alien as it is familiar.<br />
Each new day here has things to navigate that simply floor you, like how to tell someone who doesn't know yet what's happened, or how to buy a newspaper without automatically reaching for the one you used to get for him. Or even (however much I want to) how to have a normal conversation about something else without bringing the subject back to the person you've lost.<br />
<br />
I am clear headed about Nick's death, it was uncannily timely and as we've all said, he couldn't really have picked a better way to go, and for that I am beyond glad. We celebrated his life whole heartedly and every old photo reminds me of what a good one it was. And of course I did so much daily grieving while he was alive, we all did, seeing him gradually losing every drop of independence and physical ease, flattened by the monstrous illness. I'm so glad that's all over.<br />
<br />
But I miss my brother. Not just the helpless person I've cared for over the last few years, but my friend and companero and partner in crime; the person who knew so much about me and I him, who<br />
shared all that history and completely unconditional love.<br />
And I miss our dad, and our mum, and Nana, because all those other losses suddenly swing into sharp focus in this strange but awfully familiar new landscape.<br />
All my lost babies and my dear friend Dimi and my cat Delilah. When bereavement hits you, all these old heartbreaks come up to greet you.<br />
Although I'm way through the acceptance stage of grief for them all, it doesn't stop me being sad. <br />
I need the company of gentle people, or no company at all, and it is one of life's great ironies that at just this time, when the funeral is over, there is Stuff To Do.<br />
<br />
In the first couple of weeks after Nick died, I had to keep going. So much paperwork, people to notify and decisions to be made. The flat to clear, funeral expenses to organise, speeches and sandwiches to prepare.<br />
It was good as it only seemed like a variation of the constant shadow-boxing of the caring role and kept me focussed.<br />
Now that the initial pressure is off but there is still a ton of admin to do, it all seems so difficult.<br />
Even the simple things are like mountains to climb. A deep, melancholy tiredness is taking over and sleep is either as dense as falling down a well, or just not happening. I catch myself staring at phone numbers to ring and letters to sign as if they're in a foreign alphabet. It's exhaustion, of course, it's only natural.<br />
<br />
Part of the tiredness does come though from having to steel myself yet again to talk to someone on the phone. I'd say 80% of the receptionists I've spoken to in the last month have not had a clue how to deal with a bereaved caller. Cumulatively it's quite shocking, though mercifully outweighed by the sheer loveliness of every single person who had had direct contact with Nick.<br />
But I have had some really staggering conversations with people who have either not seemed to bat an eyelid at the news, or not even listened. Phoning one organisation to say that my brother had died, I had this dialogue:<br />
<br />
"I just need to ask you some security questions. Did you say it's your son?"<br />
"No, my brother."<br />
"OK. And where is your son now?"<br />
"er, Sorry?"<br />
"Your son. Where is he now?"<br />
"I'm sorry, I don't understand. I'm phoning you about my brother"<br />
"Where is he now"<br />
"Er...In the mortuary"<br />
"Oh. I thought you said she'd moved house."<br />
<br />
Yes, I complained, but fuck it, I shouldn't have to.<br />
<br />
I've also had a couple of calls where I say I need to report a death and the receptionist says cheerfully, "That's fine, and how's your day going today?"<br />
<div>
Imagine being really tragically bereaved and having to make these calls about a child, say, or a partner you expected to have the rest of your lives with, and getting these responses.</div>
With my old campaigning head on I want to do something about this because it is wrong, wrong, wrong. All of us are affected by loss and no one goes through life without it.<br />
We might not want to be reminded of this on a daily basis but can we not find a better way to treat each other?<br />
<br />
<br />Unknownnoreply@blogger.comtag:blogger.com,1999:blog-846362513710961155.post-6152504146465278272019-09-10T08:53:00.000-07:002019-09-10T09:37:10.510-07:00A Life Less Ordinary<h3>
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<span style="color: #323333; font-family: "georgia"; font-size: 24px; font-weight: normal;"><i>We had such a splendid send-off for Nick on </i></span><span style="color: #323333; font-family: "georgia"; font-size: large;"><i><span style="font-weight: normal;">Friday. As funerals go, it was a jolly good one and I was so touched to see people from all parts of his life there to say a last farewell. It was a day full of music and conversation and even laughter, a proper celebration for a life so well lived. </span></i></span></div>
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<span style="color: #323333; font-family: "georgia"; font-size: large;"><i><span style="font-weight: normal;">It doesn't quite feel like goodbye; he's with me in so many ways and as we had to clear the flat in such a hurry, the memories are all around me and will be over the next few </span></i><span style="font-weight: normal;"><i>months as we slowly sort out the rest of his things. </i></span></span></div>
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<span style="color: #323333; font-family: "georgia"; font-size: large;"><i><span style="font-weight: normal;">Everyone spoke so beautifully and from the heart. This is part of my eulogy for him, thinking about the last few years together and what they have meant.</span></i></span></div>
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"...When I think of Nick in his glory days he seemed to collect watches, nice pens, designer clothes and girls without even blinking. He had to look good for his work as a hotel manager and he always had the sharpest suits and the repartee to match. </div>
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He met a woman he adored who was more than a match for him and they got married and had two beautiful children and when you look at the photos from those years you can see how radiating with happiness he is. He really just seemed to have it all. </div>
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So it was particularly hard that of the two of us, he was the one to inherit HD, one of the nastiest illnesses that anyone can have. It seemed so cruel when he'd already cheated death twice in spectacular style. I felt I should have taken it on, not my little brother. But the miracles were all used up and his luck had run out.</div>
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Little by little the effects of the illness took away everything - his livelihood, relationships, money, his mobility, his dexterity and his speech, the capability to wash or dress or feed himself, his ability with figures and words and his mental alertness. Even the quick-off-the-mark sense of humour that had been his super power. You could weep with rage about it and the pity of it all. Also, he was absolutely deaf as a post. </div>
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"<i class="">Somebody Up There Likes Me</i>" might seem like a strange choice to play for someone who lost all his luck. </div>
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Nick had asked for it to be played at his funeral, and I have to admit I raised an eyebrow. </div>
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But then I started thinking about the real miracle of his life: The way he dealt with his illness and his courage to keep going. Although he had lost so much, he always kept his dignity. When he had lost so many of the things we think make someone a man, he became more of a man. </div>
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Never complaining, always cheerful and stoic, grateful for everything anyone did for him and happy to see you. </div>
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Despite everything that could have knocked him down he was still up for it, still engaged with life and looking forward to things. </div>
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He made friends, he had family and children who loved him, he had his nice flat and his cat and his boys' nights out and lovely people taking him out to lunch; he had his wine and his Netflix and his hot shower every morning. </div>
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The fact that not just once but twice, by pure luck he had ended up living just a few minutes' walk from me and my family. What are the odds of that happening with a council flat? </div>
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I realised that he actually felt lucky, and yes, he really was. And the way he died was maybe the luckiest thing of all - happy, relaxed, out for lunch with one of his favourite carers at the pub he always used to go to as a lad with his friends when his whole life was just beginning - no pain, none of the terrible long drawn out deterioration I was secretly dreading. Instead his heart just stopped. </div>
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He quit while he was ahead, but what has been clear through all the shock of sudden parting is this - his life was transformative. </div>
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He inspired and encouraged so many people and every card and tribute we've had says the same thing. </div>
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I feel so grateful that Nick had the life he did and felt as loved and connected as he did and that his spirit has so touched the people around him.</div>
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Somebody Up There definitely did like Nick, and it's why we are all here today to celebrate his life. <span style="-webkit-text-stroke-width: initial;">What an extraordinary one it has been. You are an inspiration. Here's looking at you, Bro."</span></div>
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Unknownnoreply@blogger.comtag:blogger.com,1999:blog-846362513710961155.post-69310072451978720192019-08-26T02:04:00.004-07:002019-08-26T02:04:33.655-07:00Strange DaysTwo weeks since Nick died and it's been what you might call a Funny Old Time. Still in a state of mild shock. So many mixed up feelings, and crazy thoughts running at random through my head at all hours like a lunatic shopping list.<br />
So much to take in, even after two weeks of acclimatising. SO much to do.<br />
So many people and organisations to tell! As well as clearing the flat, because when a council tenant dies you get two rent free weeks and then start paying the full whack, which is fairly hefty without Nick's various benefits and exemptions. I couldn't bear or begin to do it all in just two weeks so will pay, but can't afford to for long and what would be the point when he's not there?<br />
<br />
Meanwhile, the gigantic web of bureaucracy that had underpinned the last few years with Nick now needs to be dismantled and it all has to be done properly.<br />
Don't worry, though! The government will do it all for you! we're told.<br />
"<i>Tell Us Once</i>" is a brilliant way to save the poor bereaved next of kin from having to plough individually through the vast amount of paperwork and phone calls to inform absolutely everyone: benefits agencies, council, DVLA, the whole shebang. Brilliant. <br />
Unless of course, the person you cared for died in unusual circumstances requiring a coroner's report, meaning that - like us - you won't get a death certificate for almost two weeks, and Tell Us Once is only available on issue of a death certificate.<br />
<div>
So I have notified most of the key organisations one by one myself, while also telling the District Nurses and the Neuro team and the care agency and the Citywide alarm service, the Huntington's Disease Association, the butcher the baker the candlestick maker, cancelling the direct debits and also looking for Nick's will and making an appointment with his solicitor in the north east to begin the whole sorry business of winding up his affairs.</div>
<br />
Putting all the unused medications in a paper bag to take back to the pharmacy at some point, and the care agency logs for them to collect.<br />
Sorting through his clothes and toiletries and kitchen things and books and photos. A life. A life we had together for so many years as brother and sister, the letters and postcards I'd sent him over the years, the family albums, little bits and pieces from our childhood like his teddy bear and his Tonka truck and the funny clay figure he'd made at school.<br />
I did, in the back of my mind, expect to have to do this one day, but not yet. It's so dreadful to do now that it's almost pleasurable because it brings back so many memories that had been pushed away in the focus of Nick's illness. That has been in the forefront for so long that it's good to remember him now as the person he used to be, the old suave ladykiller Nick, the handsome brother who could always make me laugh, who loved a sharp suit with the repartee to match, and had a watch for every day of the week and two at weekends.<br />
<br />
The cards and condolences keep coming in, so many that it's quite overwhelming. So many referencing Nick's cheerfulness and courage and what a gentleman he had been through his illness.<br />
I feel so grateful that Nick had the life he did and felt as loved and connected as he did (even though I agonised that it was never enough) and that his life has so touched the people around him.<br />
That twice, a quirk of luck brought him to live just a few minutes' walking distance from us, and that he left us in the way he did - so quickly, with no pain, and that I'd seen him and hugged him just a few hours earlier.<br />
<br />
I feel upbeat, then suddenly poleaxed with a weariness so deep it feels as if no amount of sleep will cure it, even if I could sleep properly which I can't. Waking up at 3am with my head whirring, so many thoughts and memories rushing at me in the dark like meteor showers.<br />
Ridiculous random thoughts like, I must tell people at the Grey Horse where Nick used to go every Thursday night back in Consett. And, remember when we went with Dad on the ferry to France to scatter mum's ashes over the sea and they all blew back in our faces? And, I wonder what happened to that little gold star he used to wear on a chain? And underlying that, just a jumbled sense of relief mixed up with loss that's hard to fathom. Heart aching, bewildered, my compass needle gone.<br />
<br />
We still have the funeral to get over with, but bank holiday and waiting for a corners' report (heart failure on two counts) have made it slow going and perhaps just as well. The paramedics at the pub said at the time, take it as slowly as you need to, people always think they have to rush but honestly if it takes you three weeks to arrange then that's fine. Wise words.<br />
They are experts in shock, I suppose and understand things that most of us never see until we're right up close in the middle of it.<br />
<br />
Becoming a carer happened almost overnight and it stopped just as suddenly. Being a sister was for most of my life. Now what?<br />
It's much too early to think about the future, even though with a funeral to plan and my Carers' Allowance stopping in 6 weeks' time, there is no possibility of <i>not </i>doing.Unknownnoreply@blogger.comtag:blogger.com,1999:blog-846362513710961155.post-87411732234932787162019-08-14T03:52:00.000-07:002019-08-14T03:59:26.848-07:00Nick. <!--[if gte mso 9]><xml>
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<br /></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipFun7Iaet_qLG7vt3X41yhxcBWWe97BMDdsQHhhsiqAGIyndNsb4hjEzB3hAi2y4bK7C7BdkAcCR8xL8MAhRM2jR3Vh-ylhuCnrwfMfmje5u2a0cWzeyQBLaJbugLNWEyfdknhthNH-o/s1600/DSC00870.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipFun7Iaet_qLG7vt3X41yhxcBWWe97BMDdsQHhhsiqAGIyndNsb4hjEzB3hAi2y4bK7C7BdkAcCR8xL8MAhRM2jR3Vh-ylhuCnrwfMfmje5u2a0cWzeyQBLaJbugLNWEyfdknhthNH-o/s320/DSC00870.jpg" width="240" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">Nick
died at the weekend. Sudden, and totally unexpected. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">He
had gone out for lunch with Sophie, a lovely carer / friend who takes him out
on a Saturday, and I’d seen him that morning and taken him his paper and had
our usual Saturday cup of coffee together before she arrived. He was wearing a
favourite yellow shirt that I’d ironed and recently repaired after he’d popped
all the front buttons off. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">A
normal Saturday. I was going to go for my afternoon swim and come back later to
bring him some extra bit of shopping – already forgotten what – and had planned
to spend the evening with him, watching TV and cooking dinner.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">I
had been upset to see him that morning, his movements more violent than ever,
legs kicking and body contorting wildly like someone being eaten alive by ants.
<o:p></o:p></span></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;"><span style="mso-spacerun: yes;"> </span>“Can you not get comfortable, bro?”<o:p></o:p></span></i></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">He’d
already burst the pressure cushion brought by the District Nurses. But he said
no, he was fine, and looking forward to his lunch out with Sophie.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">He
didn’t look fine. His chorea was merciless. I’ve got to get him a meds review,
I thought. Something has to be done to ease this.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">Be
careful what you wish for, they say…<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">I
was just leaving the house with my swimming things when my mobile rang. The
phone had been set to silent and I saw that I’d had some missed calls. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">He’d
been at the pub. He’d been reaching for his glass of wine. He just…went. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">Paramedics
came but it was already over. I got the call that everybody dreads, and Simon
and I drove up there, shaking. Tell me it can’t be true.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">He
looked so comfortable though. It was the first time in years that I’d seen him
perfectly still. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">Be
careful what you wish for. But actually, in between the shock and the disbelief
and the – actually that’s mostly it right now, the shock and disbelief - I am
glad. If there was anything I could have wished for him, it was to go like
this. And typical Nick - in the pub. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<!--EndFragment--><br />Unknownnoreply@blogger.comtag:blogger.com,1999:blog-846362513710961155.post-66323474582319701732019-08-08T02:22:00.000-07:002019-08-08T06:41:53.092-07:00This is Huntington’s.<!--[if gte mso 9]><xml>
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<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiedaW-j7RU6D14wRx-Q7Oxg_x2PSLM9uUY1jprrZiGsDRf3wckGeFx9kj08B-yYjW561jW58ML8WRSL8AzwKiALN6hFcLtroUUud_ax8zls7eTBwdWkRdpjcX6gZD4s5LB7w_toTnCx_E/s1600/20190807_084917.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiedaW-j7RU6D14wRx-Q7Oxg_x2PSLM9uUY1jprrZiGsDRf3wckGeFx9kj08B-yYjW561jW58ML8WRSL8AzwKiALN6hFcLtroUUud_ax8zls7eTBwdWkRdpjcX6gZD4s5LB7w_toTnCx_E/s400/20190807_084917.jpg" width="300" /><span style="font-family: "tw cen mt"; font-size: 12pt;"> </span></a></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "tw cen mt";">How is it
possible for a person who can’t walk more than a few steps or wash and dress
himself, to generate so much chaos? </span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "tw cen mt";">I ask myself this for the 500<sup>th</sup>
time.<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "tw cen mt";"><br /></span>
<span lang="EN-US" style="font-family: "tw cen mt";">I used to
call it the Nick factor, the way that if anything could possibly go wrong with </span><span style="font-family: "tw cen mt";">almost
anything you care to name, it would do. </span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "tw cen mt";">Now I wonder if it is just the way
things are for anyone with an impairment and their carers, and if, for all the various avenues of support from government and social services and healthcare, life is just
not set up for us. <o:p></o:p></span><br />
<span lang="EN-US" style="font-family: "tw cen mt";">And with complex conditions like Huntington's, there are so many factors - not just the physical symptoms which we all know are horrible and many, but the mental and cognitive and social and financial and all the other knock-ons that simply don't fit so easily into a simple category of "illness". </span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt";">And also,
with HD there is so little that’s predictable. And it all happens at once. </span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt";">And I am on the alert almost every minute of every day and yet never quite prepared.</span><br />
<span style="font-family: "tw cen mt";"><br /></span>
<span style="font-family: "tw cen mt";">As is often the way, I came back
from a lovely weekend away to a whole deluge of new crises. </span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "tw cen mt";">I don't usually wash or dress Nick as it needs two people, but was helping him put on his pyjamas and saw </span><span style="font-family: "tw cen mt"; font-size: 12pt;">a nasty looking pressure sore
on his bottom that the carers have either missed or ignored. </span><br />
<span style="font-family: "tw cen mt"; font-size: 12pt;">There’s no record
of any concerns in their daily log, and there’s not even the standard issue
body map diagram showing which areas to be aware of.</span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "tw cen mt";">Why the
hell has no-one noticed this? It looks like a stage 2 to me, where the skin is
broken. This is serious. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "tw cen mt";">His special Omega chair with the inbuilt pressurised seat has been knackered for months so that can’t
have helped. Today it gave up the ghost. It just kind of collapsed from under him, he said, and the castor came off, leaving it capsized on the floor like a poor old dinosaur. </span><br />
<span lang="EN-US" style="font-family: "tw cen mt";">Thank goodness he wasn't hurt. It's the only thing he can easily sit on for long though, and the spare armchair is creaking dangerously with every shudder and kick, only made worse by the fact that he is so uncomfortable there. </span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; font-size: 12pt;">We need to get hold of the physio so she can authorise the manufacturers to come out to do a repair as soon as possible; but when I ring, she's on holiday for the next two weeks. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "tw cen mt";"><o:p>And there's</o:p></span><span style="font-family: "tw cen mt"; font-size: 12pt;"> a
worrying message on Nick's phone from his bank about low funds, and looking at his
online banking it transpires that there have been three lots of £98 debited
from his account by the council. Whaaaa?!!!? </span><span style="font-family: "tw cen mt";">Thanks to his housing benefit and various exemptions, it's supposed to be under a tenner.</span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "tw cen mt";">I get on
the phone and manage to talk to someone who is as confused as me but
thinks it might be something to do with a default setting by their computers when Nick’s housing benefit was recently re-assessed. (i.e we got four identical
letters saying that as Nick’s circumstances had changed and he had not informed
them, they were suspending his housing benefit. I know the ropes by now and
apart from a knee-jerk email that I knew no-one would ever reply to, just
sucked it up and made the journey to the council offices with a big sheaf of evidence to
show that Nick’s circumstances had <i style="mso-bidi-font-style: normal;">not</i>
changed and here was the proof. A week later it was reinstated and I gave a
little cheer. <o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "tw cen mt";">“<i style="mso-bidi-font-style: normal;">But by the way</i>” I had asked the
advisors, “<i style="mso-bidi-font-style: normal;">this won’t affect his rent
will it</i>?”<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "tw cen mt";">No, I was
told, because he is in credit with his rent payments and the Direct Debit is ticking along as usual. Phew. All good then. <o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "tw cen mt";">But
apparently not, as some kind of computer / human blip has alerted a default
payment and Nick’s weekly direct debit has rocketed up to nearly a hundred
quid, with no notification whatsoever. And no, they can’t refund it at their
end. They will send me a form to fill in which will take up to four weeks to
process – never mind that he is quite spectacularly in the red right now and
all his bill payments are about to bounce. <o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "tw cen mt";">How can
this be happening? I call the social worker for advice. She sends me a link for
a crisis payment, because I can’t keep funding Nick for everything, I’m
struggling these days to pay my own bills (Carers’ Allowance = 3p an hour
according to one of my online friends) and surely the council need to take some responsibility here. An unannounced rent rise of 10 times the agreed rate? </span><br />
<span style="font-family: "tw cen mt";">A bit of researching reveals that the housing benefit department and the rent department are not even both part of the local authority. One of them is a privately contracted company and communications are generated by numerical calculations rather than people and words. </span><br />
<span style="font-family: "tw cen mt";">Holy Moly. </span><span style="font-family: "tw cen mt";">It’s not
quite Gilead, but we’re definitely in Terry Gilliam Brazil territory. </span><br />
<span style="font-family: "tw cen mt";"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "tw cen mt";">Oh, and even though he was supposed to have enough to last the week, Nick has run out of wine, and his left hearing aid isn't working.</span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "tw cen mt";"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; font-size: 12pt;">There's more, but these are the things I need to deal with most urgently and after </span><span style="font-family: "tw cen mt";">two</span><span style="font-family: "tw cen mt";"> </span><span style="font-family: "tw cen mt"; font-size: 12pt;">fairly full-on days, they're all sorted. The District Nurse has been to dress and check the sore and supply a blow-up pressure cushion which eases the discomfort of the creaky armchair and the Red Cross emergency repairs team have come to the rescue and reassembled the broken Omega. </span><br />
<span style="font-family: "tw cen mt"; font-size: 12pt;">And after four more phone calls I found a mole at the council who told me to call Nick's bank and request an immediate refund under the Direct Debit indemnity clause. And indeed, as the debit agreement was for a stated weekly amount and this wasn't it and there had been no authority to change it, they didn't bat an eyelid and put the money back into his account </span><span style="font-family: "tw cen mt";">straight</span><span style="font-family: "tw cen mt";"> away</span><span style="font-family: "tw cen mt"; font-size: 12pt;">. </span><br />
<span style="font-family: "tw cen mt"; font-size: 12pt;">I've checked the hearing aid and he had somehow, heroically, put in a new battery himself but not had the dexterity to remove the little orange sticker on the back so it wasn't activated. Simple thing to fix.</span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; font-size: 12pt;">And I have done an online shop and got more wine. </span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; font-size: 12pt;">So, phew. </span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; font-size: 12pt;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; font-size: 12pt;">Nick is happy again and much more comfortable; </span><span style="font-family: "tw cen mt"; font-size: 16px;">he's got his radio and his chair back and a dressing pad on his bottom. He's over the moon. T</span><span style="font-family: "tw cen mt"; font-size: 12pt;">he nurse will come in again tomorrow and he has money in his account again and he doesn't seem to be struggling to eat quite as badly as he was last week, and just for the rest of today I feel I can breathe a bit easier.</span><br />
<span style="font-family: "tw cen mt"; font-size: 12pt;"><br /></span>
<span style="font-family: "tw cen mt"; font-size: 12pt;">But this is Huntington's. It's not only the awful jerking and spasming and losing the ability to swallow. It's not only the memory loss and the mood changes and the accidents and the super-strength. The addictions and the obsessions and the reckless spending and the dental problems and the over-heating. </span><span style="font-family: "tw cen mt"; font-size: 12pt;">There are so many threads that all seem to wind and unravel together that it takes your breath away. If you're not careful it can take over your own life, too. </span><br />
<span style="font-family: "tw cen mt"; font-size: 12pt;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "tw cen mt";">I sometimes
feel a bit guilty for taking time off and just getting out of town, immersing
myself in other things – sea air and green spaces and old friends (most of whom have had
their own life upsets), and conversations about music and art and love. There I
am on the move again when other carers are stuck 24/7 with no respite and Nick
can’t leave his flat or lift a spoon to his lips. But these little breaks are
like vitamin shots for the soul, powering me up for the return to another onslaught
of what the HELL just happened and oh God I didn’t see that coming. This is Huntington's - relentless, unforseen and unpredictable. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<!--EndFragment--><br />Unknownnoreply@blogger.comtag:blogger.com,1999:blog-846362513710961155.post-28856999745853733072019-08-02T01:24:00.001-07:002019-08-02T01:24:24.780-07:00Unbreakable<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDKeW43LbBGphIHsIx3Zgavoqq_wXK7diaollQMN0i_G_YGuUcy8-5Au8KuRqD3l3rlraW1-1LxY6sLiMyvtfgw5kOG4-9EUiphp9VPY8uF8rZFmKgv-pXEPQOgCRbGUjejuWmqJf3_JA/s1600/Photo+on+30-07-2019+at+18.11.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="1080" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDKeW43LbBGphIHsIx3Zgavoqq_wXK7diaollQMN0i_G_YGuUcy8-5Au8KuRqD3l3rlraW1-1LxY6sLiMyvtfgw5kOG4-9EUiphp9VPY8uF8rZFmKgv-pXEPQOgCRbGUjejuWmqJf3_JA/s400/Photo+on+30-07-2019+at+18.11.jpg" width="400" /></a></div>
<br />
To tell you the truth, I feel pretty damn broken today. I feel pretty damn broken quite a lot of the time, every time a new crisis sends a rabbit punch to the head from an unexpected direction.<br />
<br />
There are periods of relative serenity and then suddenly a week or a month when something happens EVERY DAY.<br />
<br />
What do we do about it? Keep going. Find ways to keep going.<br />
<br />
I like this t shirt because on a bad day it reminds me of the strength of the human spirit and all the people who keep on fighting to get the best for our loved ones and one day, find a cure for Huntington's. There are so many of us out there, just doing our best under tough circumstances.<br />
Be strong, dear readers, whatever you're facing today, and have a slightly flabsome arm flex from me.<br />
<br />
<br />
<br />
<br />
<br />Unknownnoreply@blogger.comtag:blogger.com,1999:blog-846362513710961155.post-92063364868077879332019-07-15T01:38:00.000-07:002019-07-15T01:38:16.700-07:00Hooray, hooray, it’s a holi-holi-day!
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<br />
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRVilEVp8YYt4qegXXDS7DPZouzLImFJgz4KlkI3sE3wbQJ14ULe5V3Ih5afXWANM25W2oFc6Ol8LzmiFGlrZOHvfj0VTGx_81bmkvqZUu4UYw4cy6EcjVqqW8E7wQbWmuM-w4Vcwu748/s1600/20190629_101548.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1141" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRVilEVp8YYt4qegXXDS7DPZouzLImFJgz4KlkI3sE3wbQJ14ULe5V3Ih5afXWANM25W2oFc6Ol8LzmiFGlrZOHvfj0VTGx_81bmkvqZUu4UYw4cy6EcjVqqW8E7wQbWmuM-w4Vcwu748/s320/20190629_101548.jpg" width="228" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; font-size: 14.0pt; mso-ansi-language: EN-GB; mso-bidi-font-size: 12.0pt;">Yes, another one, this time
for Nick. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; font-size: 14.0pt; mso-ansi-language: EN-GB; mso-bidi-font-size: 12.0pt;">It’s all packed – favourite
shirts ironed and folded in his case, socks and boxers for the week, jeans and
shorts, pyjamas, handkerchiefs and dignity bibs, an outfit he’s chosen for
today hanging up and labelled on his wardrobe door, just the toiletries to pack
this morning after he’s showered. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; font-size: 14.0pt; mso-ansi-language: EN-GB; mso-bidi-font-size: 12.0pt;">We’ve got his clock, his
radio, phone and toothbrush chargers in a separate bag, even a pair of trunks
in case he gets the chance for a dip. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; font-size: 14.0pt; mso-ansi-language: EN-GB; mso-bidi-font-size: 12.0pt;">Travel insurance certificate
printed out in a folder, and – unlike your average holiday perhaps – his care
plan and full medical details including dietary guidelines for a soft diet to
prevent choking.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; font-size: 14.0pt; mso-ansi-language: EN-GB; mso-bidi-font-size: 12.0pt;">I’m picking him up in an hour
after his morning carers have helped him wash and dress, and we’re setting off
for the seaside! <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; font-size: 14.0pt; mso-ansi-language: EN-GB; mso-bidi-font-size: 12.0pt;">A week at Sandpipers in
Southport which is one of three specialist respite facilities run by <a href="https://revitalise.org.uk/" target="_blank">Revitalise</a>
– a brilliant charity helping disabled people have a break like anyone else. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; font-size: 14.0pt; mso-ansi-language: EN-GB; mso-bidi-font-size: 12.0pt;">If you don’t know, then it’s
hard to imagine the enormity of this. It’s not just about using a wheelchair.
When you can’t sleep in a normal bed, when everything you eat has to be pureed
and fed to you spoon by careful spoon, when you can’t be in one place for long
without knocking something over or pulling a door off its hinges, the very
thought of going on holiday is the opposite of relaxing. Unless it’s somewhere
designed and run especially for people like you. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; font-size: 14.0pt; mso-ansi-language: EN-GB; mso-bidi-font-size: 12.0pt;">He went to the same place last
year and it felt like a miracle. He absolutely loved it, just being in a new
place (though this is not always easy for people with HD who can find a change
of routine very frightening), being cosseted by the staff and chirpy young
volunteers. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; font-size: 14.0pt; mso-ansi-language: EN-GB; mso-bidi-font-size: 12.0pt;">He was by no means the most
impaired person in the room, for once. And everyone is just treated like the
human being they are, not just a service user with special needs. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; font-size: 14.0pt; mso-ansi-language: EN-GB; mso-bidi-font-size: 12.0pt;">So I think it’ll be great for
him and he’s really looking forward to it. While he’s away I’m going to <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; font-size: 14.0pt; mso-ansi-language: EN-GB; mso-bidi-font-size: 12.0pt;">a) do nothing (probably not as
I have a million things to catch up on, all the things that back up when you’re
running around trying to get things organised for someone who can’t do it
themselves. But maybe an indulgent morning in the garden reading a book!!!) <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; font-size: 14.0pt; mso-ansi-language: EN-GB; mso-bidi-font-size: 12.0pt;">b) deep clean and sort out his
flat, including the boxes in the cupboard that we stashed away when Nick moved
in 18 months ago. There’s </span><span style="font-family: "Tw Cen MT"; font-size: 18.6667px;">just</span><span style="font-family: "Tw Cen MT"; font-size: 18.6667px;"> n</span><span style="font-family: "Tw Cen MT"; font-size: 14pt;">ever been time to get to them, there’s always so much going on in the day to day.</span></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; font-size: 14.0pt; mso-ansi-language: EN-GB; mso-bidi-font-size: 12.0pt;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; font-size: 14.0pt; mso-ansi-language: EN-GB; mso-bidi-font-size: 12.0pt;">Also, knowing that he’s in
such a good place and was so happy and well looked after last year has put my
mind at ease; I feel we both know the ropes now. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; font-size: 14.0pt; mso-ansi-language: EN-GB; mso-bidi-font-size: 12.0pt;">It was a very close to the
bone thing as we weren’t sure until ten days ago if funding would be approved.
There’s no way we could have afforded it ourselves, especially as Nick’s care
needs have increased and with that, his level of support. These things don’t
come cheap, and when I saw last year how carefully staff looked after the
residents, it’s not surprising, but it does make it hard to afford – living
with a long term disability is expensive and disposable income tends to
dissipate as care needs increase. But then, hence the need for a break, and
hooray for Revitalise. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; font-size: 14.0pt; mso-ansi-language: EN-GB; mso-bidi-font-size: 12.0pt;">And hooray for our Huntington’s
Disease Association advisor, Diana, who organised a grant at the last minute to
pay for a big chunk of the fee. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; font-size: 14.0pt; mso-ansi-language: EN-GB; mso-bidi-font-size: 12.0pt;">When so many things seem so needlessly
difficult (yep, looking at you again Sheffield City Council and we’ve by no
means finished with the Ross Care saga after a thrilling Part Two last week) it
is a wonderful feeling to have a door opening for you thanks to some of these
guardian angels. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; font-size: 14.0pt; mso-ansi-language: EN-GB; mso-bidi-font-size: 12.0pt;">So I can’t thank the organisations
who have helped us enough. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; font-size: 14.0pt; mso-ansi-language: EN-GB; mso-bidi-font-size: 12.0pt;">Meanwhile, it’s a sunny
morning and we’re going to pack some tunes from Nick’s CD collection and go off
on a road trip, just the way we used to. Even if there is a wheelchair in
the back. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<!--EndFragment--><br />Unknownnoreply@blogger.comtag:blogger.com,1999:blog-846362513710961155.post-25763975725121989872019-07-10T01:33:00.001-07:002019-07-10T01:33:38.034-07:00Tell me Something Good
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<br />
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; font-size: 12pt;">“</span><i style="font-family: "Tw Cen MT"; font-size: 12pt;">Nick is very angry</i><span style="font-family: "Tw Cen MT"; font-size: 12pt;">”, says the Senegalese
care worker.</span></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; mso-ansi-language: EN-GB;">Oh
no! What’s the matter now? I’m immediately worried. It’s not like Nick to be
angry – actually, it’s about the one characteristic of Huntington’s Disease
that he doesn’t have. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; mso-ansi-language: EN-GB;">Our
mum had legendary rages and spat out fury like a tiny wild cat; it’s a
well-known symptom of the illness and something most families affected by HD
will know only too well. But Nick is placid and even tempered, and the nearest
I ever see him to cross is when he gets agitated by something like his TV not
working or thinking he has run out of wine. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; mso-ansi-language: EN-GB;">“<i style="mso-bidi-font-style: normal;">See!</i>” she points at him as he lunges at
the spoon of yoghurt being held towards him by her colleague, “<i style="mso-bidi-font-style: normal;">he is moving very angry.</i>”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; mso-ansi-language: EN-GB;">I
realise she means that his physical spasms are getting worse. And they are.
Despite relative order and calm over the last few days, despite a recent
medication review, despite everything that anyone can do to keep things on an
even keel, the chorea is noticeably worse and also, in the warmer weather he
seems to be over-heating like crazy. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; mso-ansi-language: EN-GB;">But
he is happy – and so, I realise am I. Despite all the bloody slings and arrows
and all that jazz, the paperwork and the latest housing benefit fuck up and the
broken hoover and the nutty neighbour and every little cross we have to bear, I
just feel extremely grateful that here we damn well are. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; mso-ansi-language: EN-GB;">A
friend who knows about these things was telling me about Twitter’s Angry
Algorithm. Apparently angry tweets (and I’m sure this equally applies to posts
on Facebook) get much more traction than happy, jolly ones and photos of
otters. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; mso-ansi-language: EN-GB;">Apparently
it’s an algorithm thing. The web has a dark heart and feeds on Schadenfreude
(and its ugly sisters Angst and Weltschmerz) <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; mso-ansi-language: EN-GB;">Well,
so be it. I've certainly added to the angry thing more than somewhat myself, but since hearing about that I've decided I'm not playing. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; mso-ansi-language: EN-GB;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; mso-ansi-language: EN-GB;">Today
I have to take Nick to the bank in town to get bank statements detailing all
his income and expenditure for the last six months, so that I can later take
the statements to the council as proof that his circumstances haven’t changed;
they have stopped his housing benefit and council tax exemption because they
have somehow got the impression that he is getting money that he hasn’t told
them about. Yeah, right. And - if only! His finances are down to the knuckle as it is. If anything extra ever does come his way, that would be from me, bailing him out most weeks
because we can’t really make ends meet. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; mso-ansi-language: EN-GB;">This
is not just us, by the way, it’s a terrifying percentage of carers nationwide
who prop up their loved ones and the whole decaying social care system, as
revealed in the <a href="http://www.carersuk.org/images/News__campaigns/CUK_State_of_Caring_2019_Report.pdf" target="_blank">State of Caring repor</a><a href="http://www.carersuk.org/images/News__campaigns/CUK_State_of_Caring_2019_Report.pdf" target="_blank">t </a>this week. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; mso-ansi-language: EN-GB;">And,
No, I still haven’t organised getting Power of Attorney at the bank yet which
would make life so much easier. It’s on the list. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; mso-ansi-language: EN-GB;">But.
Living well is the best revenge as I’ve said before, and despite all of the
above, the only thing we can do is to make the best of it. The trip to the bank
and trying to find a disabled parking space – always fun! – will be a micro
adventure. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; mso-ansi-language: EN-GB;">So
stuff you, angry algorithm, go and find a president to play with. I am choosing
optimism and positivity today. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<!--EndFragment--><br />Unknownnoreply@blogger.comtag:blogger.com,1999:blog-846362513710961155.post-17418005780867375072019-06-30T04:26:00.000-07:002019-06-30T04:53:54.581-07:00When Life Gives you Lemons….<!--[if gte mso 9]><xml>
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<!--StartFragment-->
<br />
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; font-size: 12pt;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; font-size: 12pt;">…well,
given the changeable weather, I can’t decide whether to make a cold G&T </span><span style="font-family: "tw cen mt";">or a</span><span style="font-family: "tw cen mt";"> </span><span style="font-family: "tw cen mt"; font-size: 12pt;">hot toddy,</span><span style="font-family: "tw cen mt"; font-size: 12pt;"> but whatever, I’m determined to find a positive outcome to this
latest curve-ball.</span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">What
else can you do? It’s the only way I can deal with a difficult situation, and
what carers do in general. Life knocks you over – quite a lot - and you just
have to dust yourself off and get up again. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">This
is a bit of a rant, but do hear me out as there is a positive reason for
telling this sorry tale. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">I
wrote last year about our disappointment when Nick was expecting his new
electric wheelchair and we waited in on the most glorious day, one of the first
delightful days of that long hot summer. We were very excited because the old
wheelchair had finally given up the ghost and wasn’t safe to use anymore. The
NHS order the product then the delivery and fitting is carried out by a company
called Ross Care.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">We
waited and we waited, but the wheelchair didn’t arrive. The delivery had been
scheduled for 9am. I called Ross Care switchboard and was told the engineer was
running late but would be with us by lunchtime. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">I
phoned several times during the course of that long, hot afternoon and kept
being told someone would be with us shortly. At 4pm Nick went for his afternoon
sleep and at 5pm I left, desperate for some fresh air and sunshine. Such a
waste of a day. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">When
it did arrive, a couple of days later with no warning, there was no fitting as
ordered as a matter of course by the OT at the wheelchair service, no contact
with me as urgently requested, just bunged in the hall for Nick to trip over. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">We
were just pleased to have it at all, though it was a clunky old beast and the
power pack was always a pain to dismantle when you wanted to fold the wheelchair
up to go in the car. I complained to Ross Care about their poor service but
never got a response. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">Fast-forward
a year to yesterday afternoon – another beautiful, warm sunny day after several
weeks of really yukky weather. Last year’s wheelchair had started to fall apart
and Nick has had a new once since the beginning of May. That took two no-shows
and three afternoons of waiting in too, but we were glad to get it at last
except that the battery was flat on the power-pack so the engineer took it away
to test and said he’d order a replacement. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">The
call history on my phone tells a story as I see I had called Ross Care at least
once a week for the next six weeks and several times on either side of my
holiday, in an attempt to get the chair fully usable. Every time I rang, a
receptionist would say that she’d look into it and call me back. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">Returned
calls to me from them? Ha. I’ll leave you to guess. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">I
kept calling, of course, because that’s what I do. So we were both delighted to
secure an appointment at last, for this week, a fairly reasonable slot of 1 – 5
(some organisations require you to wait in all day) and a firm promise that the
engineer would phone beforehand to make sure we were home. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">Instead,
I arrived just after 1 to find the newly assembled wheelchair blocking the
small hallway so Nick had already got into a tangle with it when going to the
loo. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">No
call. No fitting. The engineer had been in and out and gone by 12.45 and when I
tried to move the wheelchair I couldn’t budge it because an electric wheelchair
needs a key to turn it on and he hadn’t brought one. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">More
phoning. Thursday is Nick’s precious night out and I had awful visions of him not
being able to go. The receptionist kept saying that she would “<i style="mso-bidi-font-style: normal;">try to get hold of</i>“ the engineer to ask
him to come back and leave us a key, but after four hours of me phoning she had
still not managed to contact him. Where was he? Scotland? Space? Or maybe just
listening to loud music with his phone off. Maybe she just hadn’t bothered
to call him at all. Who knows. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">I
made one last call – being friendly and polite throughout because it really
doesn’t pay to piss off the receptionist - and asked her to put me through to a
supervisor: someone with the clout to order an urgent delivery of the missing key
and a proper fitting to make sure this time that all elements were in place and
doing what they were supposed to. She promised to get someone to call me
straight back. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">Three days ago. Still
waiting. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">So
– we did go out that night and had a beautiful drive out to the hills for a
drink in a country pub. Nick had the simple solution that we would just take
the power pack off and use the wheelchair as we have been anyway, manually so
that it folds up in the boot of the car. Same as we’ve been doing for the last
two months, then. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">It’s
a new month tomorrow and I will gear up again for more telephoning even as I
think how bloody infuriatingly <i style="mso-bidi-font-style: normal;">boring</i>
it is to have to do this over and over again.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">And
why am I telling you all this? Partly to share my frustration of course and
have a good sound off to a captive audience, but more importantly, <i>this</i>:<span style="mso-spacerun: yes;"> </span>- I’m genuinely horrified that once
again, organisations and different departments of the same organisation, are
not communicating with each other, to the detriment of the service user they are
working for. And that this seems to be completely normal.</span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">In
what world is it normal for a mobility specialist to deliver a wheelchair for an impaired person and not
bother to check whether all the parts are there and working? To leave an
impaired person stranded due to wilful neglect of the equipment that was meant
to help them? <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;"><span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">As
far as I can see, the NHS wheelchair service (which has a waiting list longer
than the coast-to-coast walk) issues an order for the product in good faith,
with (both times we’ve experienced this) the understanding that the equipment
provider will make sure it properly fits the client. And that it works, of
course. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">What
actually happens is that the provider just sends out a delivery driver to each
address, no nonsense with fitting or checking, boom, on to the next one. AND
PEOPLE PUT UP WITH THIS. I talk about the Nick factor but really, this cannot be happening only to us. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">There
has been too much blank mystification whenever I have talked about fitting. Too
much “<i style="mso-bidi-font-style: normal;">Talk to the hand</i>” when I phone
to raise a concern. Too many failed attempts to contact their own delivery
people, especially when a job has not been completed or gone wrong. Too much
radio silence from top brass, whoever that is. My suspicion is that this happens to a lot of people, not just us. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">This
isn’t right. It’s yet another example of the sickness at the heart of our
social care system, the fact that organisations simply do not communicate
effectively with each other or even inside their own departments. The whole
system seems to be run a bit like Bletchley Park, fragmented and
compartmentalised, sometimes with no clear lines of communication at all
between the areas who you’d think would most need to talk to each other. What
do we do about it? Especially when most of us are already on our knees as it
is. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">Well,
I think the only thing to do is talk about it and make a fuss. Do NOT put up
with bad communication and terrible service. We have to address this not just as aggrieved consumers but as problem solvers, the very people who can actually point out what needs to change. </span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">I think we have to see that we have power, as all consumers have power. </span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">I will continue to call Ross Care until Nick gets his wheelchair sorted, but (with my old community development head on) I'll also ask if we can talk constructively about improving their service. No company can be so arrogant that they don't want to do that, surely. Or am I being naive? <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">Anyway, we'll find out. Things only change when enough people have had enough. </span></div>
<div class="MsoNormal">
<br /></div>
<!--EndFragment--><br />Unknownnoreply@blogger.comtag:blogger.com,1999:blog-846362513710961155.post-62670300316993197502019-06-25T10:31:00.001-07:002019-06-25T10:33:02.282-07:00Mary Poppins Returns<!--[if gte mso 9]><xml>
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<!--StartFragment-->
<br />
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; font-size: 12pt;">Is
it possible to come back from holiday as a carer and not walk into some kind of
slapstick disaster scenario, the kind where you innocently open the front door
and a huge tidal wave of dirty water bursts through and knocks you over? I wonder, as I sit
here wading through a towering pile of paperwork and things still undealt with
to chase. </span><span style="font-family: "tw cen mt"; font-size: 12pt;"> </span><span style="font-family: "tw cen mt"; font-size: 12pt;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">Actually,
apart from the admin shit storm it hasn’t been too bad. While we were away,
Nick was so well looked after by Helen and a wonderful dream team of friends,
that in some ways I think he barely noticed we’d gone. There were a few blips but
nothing major. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">My
A-Z list of contacts and contingencies stretched over three pages and spanned the
main areas that someone could reasonably expect to have to deal with in my
absence. I’m not sure that anyone even looked at it, which is probably a good
thing. Things ticked along just fine and they didn’t need to. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">Of
course, that was lucky. I had spent the fortnight before going away making sure
that every little thing I could possibly think of was covered, and there was a
lot – financial juggling to make sure Nick had enough cash and that bills could
be paid while I was away, medications review, hearing aid repair, continence
assessment, OT and wheelchair update, repairing the broken loo, getting in
touch with police and housing and social worker about ongoing harassment by the
upstairs neighbour (he has continued to tape ill-written hate notes onto Nick’s door
every day for the last month, but mercifully didn’t actually attack anyone. I’m
almost beginning to see the notice writing as his hobby.) <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">So
everything was fine and although I did return to a couple of minor annoyances –
nobody had changed the cat litter in two weeks and I arrived to find Nick
sitting in a stuffy, stinking room with flies buzzing around his table, because the (paid) carer who was supposed to do it had not turned up – apart from that, nothing untoward, and he was happy and nurtured
and safe.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">“<i style="mso-bidi-font-style: normal;">When are you going away again?</i>” said
Helen jokingly but I actually felt that it would be possible. </span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">I can’t thank her
and the other friends enough for that, and even the usual carers who carried on doing their normal routine perfectly well without me there, even if a few things got left undone without
my constant tweaking and nagging. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">And
it did make me wonder – all the stuff I do, the never-ending to do list and
phone calls and trouble shooting – is it all in my imagination and do I make a
rod for my own back most of the time? <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">But
then, all the letters about benefits and health appointments and missed payments and PiP assessments and insurance and utilities and you bloody name it, were all waiting for me to deal with on my return and they are certainly not imaginary, I only wish they were. </span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">And last night I popped in with some food for Nick and found two carers
standing outside the flat looking fazed. Between them they had managed to take
the key out of the keysafe and drop it down the drain a few feet away. Now they
didn’t know what to do. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;"><br /></span></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">“Do you have gloves
with you?”</span></i><span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;"> Carers nearly always carry gloves. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">So
armed with latex, I climbed over the fence around the little garden area and
knelt down amongst the weeds to prise off the drain cover and yep, there was
the pink key fob glinting down there in the water. Not too deep – I fished it
out and wiped the muck off on the grass. The carers looked astonished. I
genuinely don’t know what they would have done, but chances are that Nick would
not have got his supper. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">Then
we went inside and I put Nick’s tablecloth to rights as it was sliding halfway
off the table onto the floor, and in the process discovered the hearing aid
that had been lost for the last week and that no one had been able to find. And
found some new batteries to put in the clock that is so old it doesn’t even
tell the time properly but is an important little talisman for Nick to reach
out and touch periodically on his table. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">I
felt a bit like superwoman, putting everything to rights in the blink of an
eye, or maybe Mary Poppins magically restoring order in the room, but it was
just luck really. And the eagle-eye, 360 degree overview that perhaps only the primary
carer ever really has; the person who’s there every day in all weathers,
dealing with every aspect of the care from A to Z and back again. No-one is
indispensible really, but that eagle view can take a lifetime to acquire,
just knowing that person so well, understanding their quirks, anticipating
their discomforts and getting a feel for what they need but can’t find the
words to tell you. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">On
the other hand, I know I must have blind spots just because I know Nick so well
that maybe sometimes I don’t notice the obvious. So it’s really good to know
that there are other people, like Helen, involved and getting their own feel for
his well-being.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">But,
<i style="mso-bidi-font-style: normal;">“It’s very good to have you back, Sis”, </i>said
Nick. And it’s good to be back. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">This
is often a thankless job and a frustrating one, and goodness knows the admin is
enough to drive you halfway round the bend, but for the times I can walk into
the room and be Mary Poppins for my bro, it’s all worth it. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<!--EndFragment--><br />Unknownnoreply@blogger.comtag:blogger.com,1999:blog-846362513710961155.post-88844322491386305992019-06-03T15:01:00.001-07:002019-06-03T15:01:51.399-07:00Holiday Jitters<!--[if gte mso 9]><xml>
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<!--StartFragment-->
<br />
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; font-size: 12pt;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBnqXP5IBmW5PaszJYpiNoYJQw_gM30oNIHso87TysMd7JO9c3yRZSlRHgYSJxZykNCYfxFNfa0986EeTOokrm9XMltmxZ00i7QYRVXkr6aNAyJX5PbQBSBhBC26c7OdAQnGhKwcpT0Jk/s1600/20190603_225345.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="933" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBnqXP5IBmW5PaszJYpiNoYJQw_gM30oNIHso87TysMd7JO9c3yRZSlRHgYSJxZykNCYfxFNfa0986EeTOokrm9XMltmxZ00i7QYRVXkr6aNAyJX5PbQBSBhBC26c7OdAQnGhKwcpT0Jk/s320/20190603_225345.jpg" width="186" /></a></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; font-size: 12pt;">We’re
going on holiday tomorrow. For the whole of the last fortnight I’ve been on a
countdown – not the “</span><i style="font-family: "Tw Cen MT"; font-size: 12pt;">ooh, just six more
sleeps til we hit the beach</i><span style="font-family: "tw cen mt"; font-size: 12pt;">” type, but “</span><i style="font-family: "Tw Cen MT"; font-size: 12pt;">Can
I get everything I can possibly think of in place in time so that we can
actually leave Nick</i><span style="font-family: "tw cen mt"; font-size: 12pt;">?”</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">I’ve
written before about holidays because last year I had a long weekend in Italy
with old friends, coinciding with a particular crisis beforehand that
had me eaten up with worry. </span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">It was hard to leave in the middle of it all, with
things unresolved, worried for Nick's safety and me the only person that any official body was prepared
to deal with. </span><span style="font-family: "tw cen mt"; font-size: 12pt;">Some
organisations don’t make it easy for carers (full stop) but they certainly
don’t make it easy for you to take a break.</span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; font-size: 12pt;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">Our
local council will talk to me and to no one else on Nick’s behalf; they’ve got
my name, rank, serial number and have vetted my original Power of Attorney
documents – fair enough, you might say, to protect a vulnerable person, but
this is just to talk to the repairs team! </span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">All I want to do is report a broken window catch or
a fault with the boiler, not anything remotely sensitive. Just request a repair
before he hurts himself – as when he’d pulled the radiator off the wall by his
bed - or gets locked in the bathroom because the door handle had fallen off. </span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">If
that should happen when I’m not there, then woe betide if it’s an emergency,
because they will only talk to me. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">I’m
giving you a silly example perhaps but as I think of all the things that happen
in a typical week, and the total 360 degreeness of caring for someone with such
a complex condition, well, just typing this is giving me a tummy ache. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">While
I was in Italy, Simon was home, holding the fort. He made me promise to switch
my phone off and just relax and have fun, and in the end I did and oh, I really
did and it was glorious. </span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">This time we’re going away together and Nick will be
superbly looked after by Helen, I have no doubt, but however sound and capable
she is, she hasn’t encountered the 360 degreeness of making an emergency dental
appointment for a broken tooth while dealing with wet trousers and another
handle pulled off the door and the morning carers came at WHAT time? and
there’s spilt milk all over the kitchen floor and the ESA payment hasn’t come
in so how is he going to pay for his shopping, and oh God the neighbour is
banging on the ceiling again and swearing through the letterbox. </span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">That’s pretty
much my normal, and while I don’t kid myself that anyone else with a bit of
savvy can't cope, they still need to know all the phone numbers – the dentist,
the care company, the social worker, the CPSO, the GP, the Uncle Tom Cobbley
and all. Where to find the spare aprons and bibs and the batteries and who to call if... or if... or even if....<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">My
list for Helen isn’t just a list, it’s a compendium. All the things to do.
Charging the electric toothbrush, cleaning out the wax in the hearing aids,
changing the cat litter, constant stock-taking for aprons and loo roll and
cat food and washing up liquid and cleaning materials and not even to mention
the food ordering for a special diet. Taking the hoover to be mended because
one of the carers left it in the middle of the bedroom floor, trailing flex and
all, and Nick tripped over it. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">Counting
out portions of chocolate, cakes and wine so that he doesn’t have them all at
once (bitter experience); ordering yet another remote control and checking that
the hearing loop is working. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">It’s
not rocket science. But...<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">If
there were any continuity of care, or the carers were the type to do anything
at all outside the box, I could expect them to do some of the above but they
just don’t. And these are just small examples of domestic type things, not the
big stuff, the financial and administrative tasks that take so much time and
anxiety.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">The
point is, you need to understand that there is always a 360 degreeness with an
illness like Huntington’s. Caring for an impaired person involves lots of
little things that suddenly become big when they’re unattended.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">I worry about the neighbour, who was banging on the ceiling again today and shouting at me in the corridor. He has left an abusive message taped to the door every day for the last ten days. </span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">I've told the police, who say they'll send someone round to check in. It's not good. But we've covered everything we can.</span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">Helen says, Don't Worry! Just go. Go and relax. I know she can deal with it, and that all the aforementioned on a daily basis would just make anyone into a massive control freak. </span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">Nick says, Have a lovely time, Sis. And I think he is quite looking forward to a bit of a change and dome different faces. So we're going. </span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">Expect a chilled out, relaxed, refreshed person to be writing in a couple of weeks with an "<i>oh, what the heck" </i>disposition.<i> </i></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">Well - here's hoping. </span></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<!--EndFragment--><br />Unknownnoreply@blogger.comtag:blogger.com,1999:blog-846362513710961155.post-10187599768945287722019-06-01T01:57:00.000-07:002019-06-01T01:58:14.826-07:00Stretchy Time<!--[if gte mso 9]><xml>
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<!--StartFragment-->
<br />
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; font-size: 12pt;">Have
you ever noticed that when you’re looking after another person there are lots
of different kinds of time?</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">There’s
“<i style="mso-bidi-font-style: normal;">No Time</i>”, when you’re really in a hurry but just have time for a </span><span style="font-family: "tw cen mt";">five minute job </span><span style="font-family: "tw cen mt"; font-size: 12pt;">that then takes much, much longer due
to unforeseen crises, accidents or emergency. Or, let's be honest, carelessness. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">There’s
“<i style="mso-bidi-font-style: normal;">Time Was</i>” when some precious thing
you were in the middle of doing or were looking forward to doing for yourself, gets nipped in the bud because the person you’re caring for has an unforeseen crisis, accident or
emergency. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">There’s
“<i style="mso-bidi-font-style: normal;">Where did the Time go</i>” when the one thing you set out to do gets buried while reacting to a non-urgent but consuming vortex of
care needs that you hadn’t anticipated. Even tiny things, like a lost hearing
aid needing the room being turned upside down, or discovering carers have left wet
washing in the machine to go mouldy, or a full cup with loose lid capsizing all over table, mobile phone, wallet, paperwork, trousers and shoes, requiring major mopping up and a complete change of outfit.</span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">That kind of thing. </span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">And sometimes of course it's more than a small derailment, it's a genuine crisis, accident, illness or emergency. The big stuff. That's "<i>Time Stops</i>". You probably know that one, and luckily it doesn't happen too often. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">And
then there’s a special kind of time I call Stretchy Time. When you have an
intense period of crises involving all of the above but so prolonged that
however hard you try, your own needs gradually sideline to the point that they just
stop even mattering. You come up for air briefly and stare at your own personal
to-do list with a kind of benign curiosity like a monkey looking in a mirror. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">At
this point, time seems to expand, the way it does when you’ve not slept
properly for weeks and everything feels slightly unreal. You carry on dealing
with the issues at hand because fire-fighting is what you do. You hit the wall but you
keep going and there’s a weird kind of release in this because even though
you’re up to your neck in trouble-shooting and firing off ten thousand emails,
texts, phone calls and fluorescent post it notes (baby, if I don’t write it
down then I’ve forgotten it already) trying to sort the problem and be with
your person too, at this point your own responsibilities have fallen so far off the
map that you can’t remember what they were anyway. </span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; mso-ansi-language: EN-GB;">You are free, floating in a
liminal space. At times like that, you’ve given up your personal autonomy so
much that it almost starts to feel easy. Nothing really matters. It's quite a cosmic sensation. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "tw cen mt"; font-size: 12pt;">Maybe I'll send this link to Professor Brian Cox and he could do a programme about it! What do you reckon? </span></div>
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<!--EndFragment--><br />Unknownnoreply@blogger.comtag:blogger.com,1999:blog-846362513710961155.post-23598468563043264002019-05-23T10:14:00.000-07:002019-05-23T10:14:09.503-07:00Baring my soul in public
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiWMH7okfBUYfUCanmhkBoHcPBQekRwxuglNjgqdi9-nhQ3zP46RnqWIWyQqCq4QamWlFx7lXyIugHNJrzGnOECKPPLBCjy660RSBkNQsmEWio8RX-ebIQ2bteV14aUhdq7oD0it0jI7E/s1600/20181130_090151.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1088" data-original-width="1600" height="217" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiWMH7okfBUYfUCanmhkBoHcPBQekRwxuglNjgqdi9-nhQ3zP46RnqWIWyQqCq4QamWlFx7lXyIugHNJrzGnOECKPPLBCjy660RSBkNQsmEWio8RX-ebIQ2bteV14aUhdq7oD0it0jI7E/s320/20181130_090151.jpg" width="320" /></a></div>
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<span style="font-family: "Tw Cen MT"; font-size: 12pt;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; font-size: 12pt;">I’m
a very private person yet happily write all sorts of personal things here in my
blog. When I was asked to write a diary about caring for my brother, it didn’t
seem to be any different and actually I was really delighted to think of
reaching many, (many!) more people. Nevertheless, now this <a href="https://members.tortoisemedia.com/2019/05/23/diary-of-a-carer/content.html?sig=BI_VzU339QZNgv-9-lBuFgrDyUIhPCwm5APcXI90UHs&utm_source=Twitter&utm_medium=Social&utm_campaign=23May2019&utm_content=diary_of_a_career" target="_blank">piece</a> has been
published in the online “slow news” journal Tortoise with 7,000 + subscribers*, I
feel quite strange about it all.</span></div>
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<br /></div>
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<span style="font-family: "Tw Cen MT"; mso-ansi-language: EN-GB;">Nick
and I both wanted to do it because we both think the world needs to be more
inclusive and more forgiving. Huntington’s is a bastard, no two ways about it,
but we want it to be a condition people know about and can recognise, not
something hidden and shameful. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; mso-ansi-language: EN-GB;">So
many families live under that shadow; I can understand why you might not want
people to know that you have an incurable hereditary illness in the family but
in the end, if it’s in your gene pool it will get you and the silence helps
no-one. <o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal">
<span style="font-family: "Tw Cen MT"; mso-ansi-language: EN-GB;">And
carers – we’re so invisible to so much of the world that even a popular "Discounts for Carers" scheme only recognises paid care workers, not unpaid carers.
How nuts is that? <o:p></o:p></span></div>
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<span style="font-family: "Tw Cen MT"; mso-ansi-language: EN-GB;">So
I wrote this piece for all carers and for anyone living with a life limiting
condition that takes them out of plain sight of the world. <o:p></o:p></span></div>
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<span style="font-family: "Tw Cen MT"; mso-ansi-language: EN-GB;">It’s
really not intended to be grim reading – there’s frustration and anger and
heartbreak there, but humour too I hope, powered by the belief in a better
society that looks after its weak and helpless, and strength in solidarity, and
always, always love.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Tw Cen MT"; font-size: 12pt;">*It's a fantastic platform for informed long and short reads - the news behind the news. Proud to be associated with such intelligent and interesting journalism. </span></div>
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<!--EndFragment--><br />Unknownnoreply@blogger.com