Life After Caring, three years on.

 

Did my last clean this afternoon, posted the keys through the letterbox and walked down that familiar road for the last time. 

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. 

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. 

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. 

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? 

 

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. 

I kept working pretty much through the pandemic and continued to have a lot of lucky breaks and some brilliant freelance roles.

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. 

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. 

 

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.

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. 

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. 

 

 

https://www.carersuk.org/news-and-campaigns/carers-rights-day

 

 

 

 

 

Life After Caring

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.

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.

 

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.  

 

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.

 

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. 

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. 

 

I didn’t mind going out to work; still reeling from the bereavement and sudden loss of purpose, I wanted to work.

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.

 

So, no to paid care work. Instead I got a job as a cleaner.    

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)

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?

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. 

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. 

The B Side of Love

 ....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? 

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. 

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. 

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. 

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. 

This time last year...

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.

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.

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. 

I had no idea that he only had a few more weeks to live.

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.

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.

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. 

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.  

House Arrest

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.

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.

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.

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. 

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.

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.

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?

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.

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.

I am writing this now from a different perspective, so thankful that Nick does not have to suffer, but with the memories still raw, scared and sad for all the people who are now having to do all this on their own. 

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.  

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. 

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. 

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. The time really is now. 

The Bravest Thing I've Ever Done.

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.

This 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 radio.

Their courage is just astonishing. 

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.

“Nick and I were having a beer, talking about Mum. The misery of her last few years, how the illness had stolen her life.

         ‘If I thought this would ever happen to me, I’d kill myself. Seriously, I would rather top myself than end up like that.’ 

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.

‘None of us know what life is going to throw at us,’ goes the saying, but actually with a Huntington’s diagnosis you do know. And it’s never good.

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.

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 ‘likelihood’ and ‘definite’.

It’s not a predisposition that might be averted with careful lifestyle choices and good luck. No surgery can remove the affected part.

If you have the HD gene you will develop the illness, the one you have already seen destroying your parent or siblings, and it’s this inescapable repetition that is so nightmarish.

         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?

Well, how can you think about that for long without driving yourself mad?

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 that causes Huntington’s Disease.

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.

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.

Could a high number be a mistake, miscounted or misinterpreted by an inexperienced lab technician? No.

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.

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.

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.

As a counsellor had said to Nick and me after Mum died, ‘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!’

Not the most cheering way of putting it, perhaps, but it did the trick for us. For a while, anyway.

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.

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….

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.

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.

Even when you are actively looking out for the symptoms. 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.

Whole families become experts in denial because the reality is just too overwhelming to face.

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.

         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.

I was like that for years, and then one day I just got tired and booked myself in for the test."

Happy Birthday

'January 11th. 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’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.

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?’

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.'

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. 

Later, sitting around the table with Nikki and the children, we 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. 

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.