When people say I must be such a nice, good person to do this for my brother, they only see the outside. To many of the council officials, care agency workers and various health and social care providers who have crossed me, I’m anything but a nice person: I’m the meanest battleaxe in town.
You have to be. When you’re caring for someone with Huntington’s Disease, a vicious, progressive neurological illness with a complex range of symptoms and scope – someone who can’t stand up for themselves – there is a lot of fighting involved. Corners get cut. Papers get lost. Communications go astray or are never passed on in the first place. Whose job is it to project-manage and oversee everything so that things happen the way they are supposed to? Mine. Whose job is it to notice all the little things, the small changes in health and behaviour that only someone who’s there day-in, day-out would see? Mine.
I can’t imagine doing that for my brother, people say. But we have always been close and I like to think he would have done the same for me. Our father somehow held down a full-time job while also caring for our mum, so perhaps it was hardwired. But you just don’t know what you will or won’t do for another person until it happens to you.
Monday 11 Feb
We are supplicants. Service users. Our time is not valuable.
Today we waited for an hour to see the neuro consultant. When he finally appeared, an hour later than the appointed time, he didn’t say sorry. I thought about how much he must earn in an hour, and how normal it seems to be for people with good jobs and salaries to keep us waiting.
I get £64.50 a week Carer’s Allowance and the many meetings I attend on Nick’s behalf as his advocate and carer are unpaid. I’m there for love.
They’re running late because they’re very busy. So am I. I’m managing another adult’s entire life. His myriad health appointments, his social care arrangements, his finances, his family commitments and children’s birthdays, his nutrition, his incontinence issues, his household bills and grocery shopping, his haircuts and dentist appointments, his social calendar, ultimately his happiness. Nothing happens as smoothly as you might wish.
If someone is late, what my waiting time costs me is all the other thousands of errands I have put off, the constant displacement of my own needs and, oh, what it costs me most of all is my good humour.
Eight dismantlings of the wheelchair this morning before midday. Into the car and out again to the hospital appointment. Into the car and out again for the café. Into the chair and out again for the doctor’s appointment. Into the car and out again for home. Oof! It’s a beast. It has to be, because Nick is heavy. I always have bruises. You get used to it.
I am slightly dreading tomorrow because we’re having a service review of the council-contracted care agency. I have been looking for an alternative for months. It’s worse than trying to get a decent builder – I ring, speak to the manager, they tell me they can certainly help and, yes, they are experts in the illness (they all say that) but there’s just a problem with his postcode at the moment as they’re full in that area, they’ll put us on the waiting list. Or – yes, I’ll get back to you tomorrow to arrange an assessment visit. Nothing. Never hear from them again.
But this time I really have had enough. They get an ultimatum and if they haven’t improved by the middle of March, then off with their heads. What if I haven’t found an alternative by then? Don’t ask me these questions, I’m too tired to think about it.
People often say I’m amazing. I used to feel flattered; now I just feel annoyed. Nurses are amazing, paramedics and firefighters and single parents of severely disabled children and refugees who’ve come alone to a country where they don’t know a soul or speak the language. They are all amazing. I’m just a sister.
When someone calls me amazing it’s like they’re just seeing a hologram version and not looking any further at what it’s really like. When someone says, “I don’t know how you do it,” it sounds to me like, “Don’t expect me to get involved.”
I wrote a Facebook post a while back for Carers’ Rights Day, talking about the invisibility of caring and how most of us won’t ask for help because we are just too caught up in the actual job in hand. How you’ll see me out and about looking cheerful but you won’t see me in tears of exhaustion or having to clear up the mess. If you know someone who’s a carer, I said, don’t wait for them to ask for help – don’t assume they’re OK just because they haven’t asked you.
That post got a ton of “likes” but not a single message or phone call to say, “Are you OK and is there anything I can do?”
Caring is ugly, messy, dirty. It’s tedious and boring and utterly brain-sucking, and no one wants to get too close because it could happen to any of us and who wants to think about that before you have to?
So it’s lonely too.
It’s a beautiful sunny afternoon, the first one all year. I’d like to stay home and enjoy the sunshine – plant the pansies in my window boxes, sit on the step with a cup of tea and a book, just relax. But Nick needs me. He’s run out of straws for his milkshakes. But the thought of walking into that dark, stuffy flat is depressing – I have to go but I’m putting it off. Nick doesn’t notice what the weather is like. Snow or heatwave, I throw the net curtains open to show him but he’s just not bothered.
I won’t be the only human contact he has today. With professional carers coming five times a day now, he has lots – but I will be the only one not there to “do” something to him. It’s hard for me to not fall into the trap of constantly doing, because there’s always so much, but I’m still his sister and one of my constant struggles is to pull back from the constant semi-nursing and admin to just be with him – even in a stuffy dank room that smells of microwaved dinner, with the telly on.
Week of 21-24
There are definitely some health professionals who don’t want you to be too well informed. We have one like this. It would be nice if he would talk to us like humans. So much for person-centred care – it’s more, hello, wave a prescription at us and bye-bye after barely five minutes.
It’s all very well to dole out prescriptions but he’s not the person who sees Nick every day; I have a much better insight into Nick’s changing condition and what effect the different medications seem to be having. Caring properly for someone with such complex needs is teamwork, it just has to be.
Ninety per cent of all my difficulties and worst headaches are down to services that either don’t do the job they’re meant to, or simply do not/cannot/will not communicate with any other agency, including me, about Nick’s care. I genuinely think this is the number one reason why our social care system is so broken. It’s not about funding – though, yes, of course, that is crucial. It’s about communication, joined-up working and shared good practice. All the things that have slowly been dismembered.
The physio at the wheelchair service could not have been more different, and was so nice. The first thing he did was unscrew the footplates of Nick’s wheelchair and reset them at a better angle. “Your knees were round your ears!”
I was worried that this was my fault for not having noticed but he said no, it was the wheelchair providers who should have sorted this out when they delivered the chair last summer. I remember that day well because it was one of the first days of the summer and we waited in all day for a 9am appointment.
At 4pm Nick wanted his siesta and I had to go to work so we called it a day; the chair arrived at 5pm after I’d gone. No instructions or adjusting to Nick’s height and weight – just bunged into the hall and signed for, eight hours late.
It’s just one of the reasons I get stressed. The things people don’t do as part of their bloody job, the corners that get cut or the misunderstandings that happen if Nick is on his own. His cognitive failure means he’ll say yes to anything, he doesn’t really understand what’s going on half the time and the other half of the time he’s too deaf to be able to hear what anyone is saying. So I have to be there.
If you want to know the thing that absolutely breaks my heart, it’s not the living bereavement of watching the daily deterioration of my brother losing all the abilities he ever had – though that is always there like a stone in my chest.
No, it’s this: I spend so much time doing things for Nick, being on call for him with the appointments, phone calls and admin, but also supervising his diet, shopping and preparing so much of his food. I do that for Nick – and I don’t do it for my son.
It grieves me terribly to think that even though he’s a teenager and in many ways doesn’t need me, he still misses out on the reassuring presence of having his mum at home. Ninety per cent of the time it’s my husband who makes the family dinners that the two of them eat together while I’m with Nick.
Dillon does understand, we’ve talked about it. But the bottom line is, he’s my boy and I’m not there for him.
I’ve knackered my back with the bloody wheelchair. If I were doing this as a job, I would be signing the injury book and sick leave. But it’s just me, an unpaid family carer. Don’t suggest I see an osteopath. Just one session would be my Carers’ Allowance for the week.
Met Dillon on the landing in the small hours, me having a wee, him just stumbling home from a night out. Don’t know what he’d been taking but he was loved up, or maybe just a bit drunk, but he grabbed me in a hug.
“Mum. Please say we can go to Greece. Please. Please say we can go. The three of us. Please.”
I had hardly even been able to say the word holiday. None of us had dared to think it, let alone say it out loud, but we’d always said that one day we would go back to that island we loved. How, though? How do we get away when it means leaving Nick?
Yes, he has the carers coming in but they can only operate within the framework that I have set up. The shopping, the menu planning, the food prep. The financial management, the overseeing of medications, the health appointments. The constant repairs, the wheelchair and adaptation services, the audio services to check Nick’s hearing loop system, the council officer to notify about the problem neighbour, the police, the social worker…
I haven’t finished the list but the beautiful early spring weather has galvanised me into looking ahead. A thing I don’t like to do too much when Nick has a progressive illness. But last night I’d said, right, let’s do it. Let’s go to Greece. We’ll find a way. Dillon has been so understanding for so long. I feel I owe it to us all to try.
A day off. A whole day for me to stretch, unfurl my crumpled wings and do some odd jobs I’ve been wanting to get out of the way for ages, go for a swim and then have lunch at a café and garden centre. Sit with the sun on my face, come home and potter about in the garden.
On the way to the pool, the care agency called. Just to warn me that Nick’s morning carers were running late – they’ll be with him in the next ten minutes. I said I’d pop in on the way back from my swim, intending just to stop off for a quick chat, but when I got there on the stroke of midday the flat still smelled of Nick’s porridge and it turned out that the carers had been so late I’d missed them by a squeak and he’d only just had breakfast. He was sitting in the dark again with the curtains closed. His chair was locked into the wrong position. And could I look at his hearing aids as neither of them were working?
“They’re full of wax, that’s why, Nick” (dip them both in hot water and wiggle in the special plastic wire to clear the tubes, change the batteries, try them both against my own ears to make sure the hearing loop is working, bingo).
I got him settled down with a coffee and the paper and his programme on the radio, just as the lunchtime carer arrived. It was 12.25. He’s supposed to have a time-critical breakfast call at 10am, lunch between 1.30 and 2, tea at 6 and dinner at 8pm. It’s in the contract, for medical reasons to do with his condition.
She couldn’t hang around for another two hours to come back to give Nick lunch (though strictly speaking she probably should have) so I said I would come back later and do it. I started out to the café and garden place but just lost heart halfway. What’s the point? Nick needs lunch and the carefree feeling had already gone.
People ask how I can be so self-sacrificing and that’s the answer: it breaks your will.
The days I have spent putting aside everything I had planned because Nick needs me – all carers know these. The cancelled picnic with friends, the cinema outing, or just the lovely bubble bath and good book at home, all these evaporate because something has come up – and with an impaired person who seems to create chaos without even being able to leave the house on his own, there is always something. Even fighting to find a disabled parking space that isn’t being used by someone who “won’t be long, they’d only just popped into the Tesco over the road for a pint of milk”. That happened today, though when she saw Nick she did have the grace to apologise and move.
We had a nice afternoon in the sunshine. It was a grand day to drive out into the countryside with the windows wide open but Nick’s eyes were glazed and his mouth hung open. He wasn’t looking out of the window at the beauty or at anything at all. I carried on my usual, cheerful, one-sided chatter.
Returning home in time to give him his lunchtime tablets I noticed that they have totally changed; there had been talk of the pharmacist tweaking his meds so he wasn’t taking so many all at once, but I didn’t think it was going to happen so soon.
There used to be two-and-a-half tablets in the little blister pack and now it’s just the single knockout one at lunch and another five at six o’clock. Oh, ok. As long as I know.
Then, just as I was about to leave and Nick was going to have his afternoon siesta and we’d been over for the nth time about his chocolate and wine and how much had I left out for him and why couldn’t he have more (“You know why, Nick, because you don’t know when to stop and you make yourself poorly.” “Oh yes, I remember, yes, I know”), the doorbell rang.
A carer arrived – the same one who’d come early yesterday. It was 4 o’clock.
She was all apologies. No, she knew that Nick’s tea-time call and medications are scheduled for 6pm but she’d set off from home early and thought that she’d do it this way round and, and, and…
“He’s only recently had his lunch tablet,” I said. He can’t have the tea ones just yet. He’ll be out for the count.
Come to think of it, why has the pharmacist moved one of those from bedtime to 6pm, so he’ll spend the evening in a stupor? I don’t understand. Another thing to chase.
I got two texts from Nick last night about his chocolate. He’s been having some sweets laced with CBD, which he says help relax him like nothing else but that two aren’t enough of an evening and he wants an extra dose. It’s so hard for him to type that he only does it when he really wants to say something, but honestly. We have been through this so many times, I have nothing more to say right now. I ignore the texts, but I’ll have to go and talk to him again today.
Friday 1 March
All this annoying to-ing and fro-ing is doing me a favour because it distracts from the sheer heartbreak. I popped in to see Nick this afternoon and, as usual, some little thing or other came up that I questioned. Why didn’t you ask the carers to do that, bro?
“I just find everything so difficult,” he said. And he does. The illness is taking everything away from him, every little thing you or I would take for granted, including the ability to swallow.
It’s so easy for me to forget what a struggle he has and how well he manages but what a lonely, exhausting life he must lead.
Get Nick’s paper in the morning – he likes the Saturday i, it lasts him all week. I arrive around 12 and the flat is dark with the radio blaring and Nick fast asleep. “Nick!” I gently prod him awake. “I’m putting the kettle on for a coffee.”
Switch the radio off. The fluorescent markers I made to show him how far he could put the volume have gone ignored. I’m scared of the upstairs neighbour kicking off again but Nick just doesn’t seem to understand the need to compromise, and if he does he soon forgets. It seems very hard for him to retain much information, and yet he will sometimes be able to discuss current affairs with real acuity. It’s hard to know which is the real him.
“I can’t get Netflix to work, sis.”
Oh dear. I go over to help. He needs to log in and doesn’t have the dexterity to key in all those tiny letters and numbers and he couldn’t remember his password. It’s written down on the noticeboard, I say, but he says he couldn’t find it. (It’s on a bright yellow Post-it note saying “Netflix password”.)
I log him in and we have a little chat but I can see he’s itching to go back to his programme. So I just sit and have a cup of tea with him and flick through his paper while he watches.
It would have been our mum’s 87th birthday today and a couple of weeks ago when the weather was lovely, we sat outside a pub that our parents used to go to back in the day and we discovered there was a jazz night on tonight. We thought we’d celebrate for mum. It seemed like a good idea at the time but tonight it’s raining heavily and I’m tired and could really do without it. All the heaving of the wheelchair into the car in the rain and out again and going into a strange place and facing all the stares and the “what’s wrong with him”s. People are often so lovely to us when we’re out and about, but tonight I’m just feeling knackered. I’m kind of hoping Nick won’t want to go.
We did go. The room was packed. We managed to find a space right at the back but, as usual, there’s no way we could be anonymous with Nick jerking and spasming over the course of the evening, knocking a full glass all over the table and, alarmingly, every now and then his nose would suddenly gush a thick green spout of snot like a tap, running straight down on to his jumper. His hanky was soon soaked so I got him handfuls of tissues and he kept throwing the used ones on the table next to people’s drinks and open packets of crisps.
“Nick! Put it in your pocket or give it to me!”
We didn’t last too long but actually I really enjoyed myself. And we won the raffle! We scarpered home where he threw his coat on the floor for me to pick up and I gave him his tablets.
Bedtime routine: Nick staggers into his bedroom on my arm and flumps onto the bed. Pull the snot-soaked jumper over his head and throw it into the washing basket (he’d have worn it again tomorrow given the chance) but keep his two T-shirts on because he says he’s feeling the cold these days.
Take off his socks to inspect his feet. They’re soft but the heels are gnarly and I clip and file his toenails and file the hard skin on his heel and rub in foot cream. Then trousers. He lies down on the bed so I can take off his belt first, then pull down his jeans which he also wants to wear again tomorrow as they’re fresh on, but they don’t smell so fresh… hmm, yep, there’s a big brown stain inside so I throw them in the washing basket too. Better get your boxers off too, bro, and get you some nice fresh ones (he sleeps in his pants) – er, did you have an accident today? “I don’t think so,” he says, but of course when we tug them off, they are covered in cack. These go in a bucket of Dettol in the bathroom. I pick the little balls of poo off the carpet with a tissue.
Nick sits unsteadily on a stool while I whizz a toothbrush around his mouth. I help him rinse, and lean over the bowl to spit. If we don’t get this right he just spits all down himself. I get some rubber gloves on and attack the loo, which is pretty nasty – caked in shit that takes quite a while to get off. Nick’s “not hitting the mark” is becoming more frequent, and the floor is awash with wee too, nowhere near the actual toilet bowl. He just can’t aim straight – well, how could he? Nothing else works.
Feeling quite down today. Sometimes it all just gets to me. Then I think, I just have to buck up because look at Nick. He has so little, everything gradually taken away from him: comfort, communication, mobility, continence, ability to eat and swallow easily, independence and freedom to do what he wants when he wants. But he’s so good-natured and stoic, it just puts me to shame.
We saw Becky the occupational therapist from the neuro-enablement team today. We’re so lucky to have this service. They have always gone the extra mile to help. Today she brought an amazing contraption: a kind of robotic arm to help Nick grip the TV remote control so that he doesn’t keep dropping and breaking it.
Becky asked me how I was coping. I don’t get asked that very often. (People do ask “How’s your brother?” and I know they really do mean well but it underlines we are a package deal. And it is hard to gauge whether I can give a truthful answer. Do they want to know about his increased dribbling because the muscles around his mouth are atrophying? Or that the other day he choked on some peas that weren’t mashed up enough? Or that I have started googling incontinence pants? Probably not.)
But me. How am I coping? I see the concern in her eyes, it floors me.
Well. I am coping well with a difficult situation. But isn’t that just what people do, especially as we get older and have these kinds of responsibilities – the sandwich generation with tricksy teenagers on one hand and ageing parents on the other?
This was never an informed choice on my part. When Nick moved to Sheffield to be closer to us, he was still living quite independently and I had no idea of what would be involved.
In the first poleaxing weeks and months of finding myself a carer, it became my identity. It was like having a baby, only without the jolly meet-ups with other mums. There are carer cafés, but with an impaired adult in tow the conversations are very different. The horizons are different. With babies you have hope. You expect to watch them grow and learn, not get worse.
So I try to have a life of my own and see friends and work and follow my passions. But it does also mean I feel constantly split, like someone living a double life: especially because caring is so invisible. Very few people see this side of me, but it informs everything. And I have lost so much confidence – it feels as if the only thing I really know how to do these days is care fiercely for my brother; it shadows everything else.
I remember something similar as a new mum, sometimes unable to string a sentence together, hardly able to believe I’d once had a vibrant life away from nappies and no sleep. But there was a future then. With a growing baby there is new life and hope. It’s not like that now.
A peaceful weekend. This doesn’t happen enough, but for once things were incident-free enough for me to spend a bit of time with Nick just hanging out, reading the paper while he watched the rugby on TV, with his chair tilted so he could see me as well as the television. Just having family time doing nothing much. Being together. It made me think that all the scurrying around and the blood, sweat and tears was worthwhile. Of course it is. It’s just easy to get lost in the bad bits.
My back is still sore after pranging it the other week moving the wheelchair. When I went in to see Nick today, at first I thought the hall was flooded. The flat was dark, Nick motionless in bed, but the bathroom door was open and the floor was wet there, too. Then Nick stumbled in from the bedroom with soaking jeans. He doesn’t seem to notice things that you or I would find desperately uncomfortable or embarrassing. He sloshed through the puddle in the hall, sat down in his chair and started trying to put his hearing aids in.
“Nick,” I said, “you’re soaking wet.”
“Yes, I had an accident. Just now.”
“Did you go back to bed afterwards?” I’m trying to figure out what happened.
“No, it was just now when you came in.”
Well, it clearly wasn’t as he was in bed but there’s no point arguing, I need to get him changed.
“Come on darling, let’s go back into the bedroom and get those wet clothes off.”
He flumps onto the bed, which I can see is absolutely sodden too. I put a towel down and pull his wet jeans down over his legs, which are stiff and unresponsive but jerking constantly. Then his socks and last his boxers. Get him to wipe himself with a handful of wet wipes – I can’t quite bring myself to do it myself yet, he’s got to have some dignity left. We go back into the living room just as the tea-time carer arrives. My back is agony and I was hoping to go to the pool and sit in the sauna to try and ease it a little, but now I have to do the laundry. I feel like crying.
On my way back from London where I was invited to speak at a Carers UK event. We’re going to have a sibling night in. I’ve spent too much money in the big city with eyes too big for my carer’s wages (£1.80 an hour if you’re just counting a 35-hour week, otherwise it’s considerably less. Just saying.) and Nick is skint until his next ESA payment comes in. So we’ll have a movie night at his.
There’s always that fear, going in after even just a short absence, that I don’t know what I’m going to find – and no wonder after the other day. Anyway, why haven’t the care company got back to me? I had emailed to say I was concerned that the tea-time carer didn’t know what to do, because they still haven’t put a written care plan in place. No response. On the whole, they don’t bother to answer my emails at all.
A strange text from Nick at 11pm.
“Sis, please tell everyone that I am a non smoker”
Eh? Yes, of course he’s a non-smoker. A very committed ex-smoker of the most evangelical kind. He had a 40-a-day habit for years and then, as his illness began to take hold, he hasn’t had one since. So what’s this about? “And please can we talk about it and I no sis there –”
“What’s the matter darling?” I text back, “Are you OK?”
But he doesn’t reply.
I do worry about him. What goes on in his mind. He’s alone so much. I was with him this evening but then he wanted to settle down to watch Netflix (it doesn’t matter what, he’ll have three or four different series on the go at a time – programmes or episodes that I know he’s already seen but his short-term memory has forgotten). Increasingly I don’t like leaving him alone. I need my own life but I’m torn. As he gets more debilitated, I feel he needs more constant attention. I can’t be there 24/7 but wondering if I should be.
I’ve made some mashed potato with some quiche and some baked beans and labelled it with microwave instructions for the lunchtime carer. I really never used to be this sort of person – the label writer. Caring changes you.
Check his online banking – money has been a bit tight this last week but his DLA payment has come in so he’s in the black again and we can order loo roll and cat food and basic groceries.
One thing is sure, I almost never have nothing to do. Even if there are only two or three things on my list that day, all the little bitsy things mean I’m busy all the time.
“But you were always like that,” says a close friend. It makes me wonder. Do people self-select for this role, even if we think it has come as a shock and a surprise? Though with a hereditary illness in the family, you are always a carer, even before you know it.
I still have a sore back and I am off work. No sick pay because I work for an agency now and don’t do enough hours to qualify for SSP. I had to drop my working hours dramatically in order to look after Nick and still be eligible for Carer’s Allowance, which is a double-edged sword. Helpful to have the recognition and some kind of regular weekly income, but in many ways a poverty cap. We’re not allowed to earn more than £120 a week on top of the Carer’s Allowance, or work more than 16 hours, so this tends to mean zero-hours or low-paid work because it’s flexible. I would like to know how many carers have managed to hang on to a decent, well-paid job as well as do 30+ hours a week of care. I can’t see how anyone manages.
Nick’s diary is blank, which is a relief as I don’t have to take him to any appointments this week. But bad news socially. He sees me and Simon all the time but misses other interactions. I know his old friends love him but none of them live locally any more and if they do come back, it’s usually to visit ageing parents so they don’t have much time.
I worry that he is lonely. “Will I be seeing you later, sis?” he asks, even when he’s already seen me twice today. When we first saw how the illness was developing, Simon and I talked quite seriously about building an extension so he could live with us. But it was talk about “one day”. I guess we were hoping that it would never come to that. When the time came, it was sudden and none of us were ready.
Now I wonder how long Nick can go on living on his own. On a practical level, he is hardly able to walk more than a few shuffly steps now and has been falling over.
People say: “You’ve done enough. Isn’t it time for him to go into residential care now?” Don’t think it hasn’t crossed my mind. But his illness is complex and there are no specialist facilities in our area. Even if there were, it would cost roughly £2,500 a week. None of us have that kind of money and the health professionals we see imply that people like Nick, who are lucky enough to have loving families looking after them, are better off at home until the bitter end.
In theory that’s what I want too, to make sure my brother is in a place that he can call his own. But it’s exhausting. And I can’t see it getting any better. It’s honestly best not to look too far ahead but just keep on inching along this tightrope. Keep loving, keep laughing, just keep on keeping on.