Living Well is the Best Revenge

There is a song by Marianne Faithfull called “I feel guilt” and it could be my theme tune. Bloody hell, it’s not as if I’m even Catholic!
But I feel guilt so much of the time, mainly that I'm not doing enough for Nick. I suppose underlying that is the fact that it's him who's ill, not me. As his sister I should be pulling out all the stops to do whatever I can to make the rest of his life as comfortable and easy as is realistically possible. 

Survivors’ guilt is actually a recognised phenomenon among family members who turn out not to have drawn the short straw for Huntington’s. Screwy, isn't it. You'd think we'd all be ecstatic for the rest of our lives.

But survivors may have been the last man standing in an HD family, watching their closest relatives change unrecognisably, suffer and eventually die, knowing that the cycle will inevitably repeat. 
Many experience the same kind of post-traumatic reactions as those who have actually been through a catastrophic event. 

In a sibling relationship it's very hard to untangle your feelings, especially if there are just two of you and you were always close. Knowing that one of you is going to take that roulette bullet. 
Inexpressible relief if the pistol clicks and it's not you. Inexpressible guilt if it isn't - because if it's not you, it's going to be them.

What the hell to do with that? It's primal - at all costs, wanting to live. But then unbearable to see someone you love suffer so miserably, especially knowing that the only reason it's not you is pure chance. 
Expressing guilt is the only way you can take control in an impossible situation. 

You might say, it's the same for any of us - we can lose someone just like that to road accidents, dementia, pestilence, cancer - and wonder why it happened to them and not us. 
But then factor in the lineage of HD and the nightmare quality of replaying the same family horror movie again and again and again over generations, and an extra darkness starts to descend. 
There is nothing, nothing you can do about this except try to make things better for the sufferer - and that's where the guilt starts to take hold. Because you're only human. 

So, yes I escaped and I am so lucky but there is no Get Out of Jail Free card here. The price I pay is this consuming, on-and-ongoing gnawing sense that I ought to be doing more, and it just keeps getting worse. The only thing that eases it a little bit is actually being with Nick and spending time with him, just kind of sharing the load in whatever way I can. For what that’s worth. But however much time I spend just being there, doing his laundry or cooking his dinners or taking him out to the cinema or the pub or the hospital appointments it doesn’t feel enough. 

I suppose that, having let him take the bullet then, I am doing everything in my power to make amends by becoming his carer now - but it’s not enough. Nothing I do will ever be enough.

Years ago, before Nick and Nikki got married and they were living in a little house in Gateshead, I went to visit and spent a horrible evening watching a movie with them and trying to hide the fact that my legs had gone weirdly disobedient – kind of numb like pins and needles but twitching helplessly beyond my control. It seemed to go on for hours. We were all a bit drunk but I was desperate to hide it, desperate that they shouldn’t notice because I knew what Nick would think – that this was the start of it all, the unmistakeable signs of the onset of HD.

But it wasn’t, was it? I could put myself in his shoes til I’m blue in the face but I can’t be him. I don’t know what it’s like to be in that body every hour of the day and night with legs kicking out of their own accord, arms just AWOL, never ever comfortable in one spot for more than a few minutes. So he needs me to be healthy and strong and in one piece, to be his arms and legs and brain, his PA and bank manager and taxi service.  

Most importantly he needs to be able to count on me and for me not to turn into a complete nutjob.

So I struggle with the awful guilt but I see that I have to try to have a good life myself too for all our sakes, otherwise what is the point of carrying on? And remember another documented aspect of surviving that roulette bullet, which is Post Traumatic Growth - a new zest and appreciation for life in all its small glories. Deeper connections and relationships. Recovering a sense of humour. Just being glad to be alive here and now and seeing what the day brings. 
Well. Stick a pot of coffee on. I'll drink to that. 

Just Trying to Help

The anxiety doesn’t go away though. It levitates me out of sleep in the early hours, shooting straight up in bed like Linda Blair in the Exorcist and nearly as crazed.

What if, what if, what if…?? But the fear is not even as formed as that, it’s more like a deadly gas that suffocates all optimism and all reason.

So the NHS care has begun. So far, so good, and I have met two sets of evening carers and been hugely grateful for their cheerfulness and calm. Do they even know how heroic they are in my eyes? I keep half expecting to catch a glimpse of their halos.

Apparently a pharmacist will visit today to talk over the dose of medications and their optimum timing – something I’ve been worried about ever since Nick came to live here. Even at his most out of it, he has religiously taken his tablets morning and night but over the last few weeks I’ve noticed that he’s begun to spill or spoil or even forgotten to take the night-time ones.

I have been giving them since the accident and now the care team will take over, but I feel very sure that the dosage is no longer right; Nick’s movements are worse, his sleep and appetite are worse (from experience, a sure sign that he’s either missed meds or they’re no longer strong enough) and something is off. I’ve been around him and HD for long enough, I can just tell.

But the GP can’t prescribe these meds, they have to be ordered by the genetic specialist – we have been waiting since April to see him and still a month to go. Five months. I’m wondering if the pharmacist might see the urgency and have the authority to tweak the Olanzapine, or at least escalate the case to the specialist. Five frigging months! How can that be right? In the northeast they would see you within a week if there seemed to be an urgent need.

So I want to see that pharmacist and Nick has strict instructions to call me if they suddenly turn up. The Active Recovery team have been arriving unannounced on his doorstep and only getting in touch with me if they can’t gain access, so I’ve stressed to him that he’ll need to let me know when they come.

Around midday I text him to see how the morning call went – did they turn up as planned and hope it wasn’t too early – he is a bit of an owl by nature and it will be a shock for him to have someone waking him up at 8am. And don’t forget to let me know if the pharmacist comes.

I get a reply:

“I had a nice shower and she dressed me and then I had two visits to check”

Me: “Check what? Not your tablets?”

Nick “I think so. I’m not sure”

Me: “But you were supposed to let me know when anyone else came!!”

Nick: “Sorry. I forgot”

He can’t help it. It’s the illness. The bloody illness. But I’m so infuriated I can’t speak.

I don’t reply. I can’t do any more of anything to do with him for the next few hours; he’s safe, he’s clean and dressed and fed, he wasn’t expecting to see me til later anyway. I have to change gear, find something to smile at, get my life back into perspective until I can see straight again.

Does it even really matter, says my husband. Yes!! No. I don’t know.  

I just want to make things right for him when so many things are so very much not alright and he has so little luck on his side. Over the last few turbulent months it has felt like an ongoing, constant fight to get any support at all and now suddenly we have some – I’m not quite used to it.

Are we finally in safe hands here? Time will tell. But Nick seems happy and that is what matters most.

Nothing or All

Another day, another roller-coaster. After months of feeling completely on our own, suddenly it’s all go. Like waiting at a bus stop in the cold when nothing comes along for an hour then finally three at once. I’m almost delirious with gratitude – but tempered with anxiety that these buses might not be going in the right direction.

The Active Recovery team (sent by the social worker after Nick broke his collarbone) were so quick off the mark that I got a call first thing on a Sunday morning.

“Hello, I’m at your brother’s address and no-one is answering the bell”

“No, well you see he is deaf in both ears, falls asleep with the radio on and he doesn’t normally wake up til midday so he wouldn’t have heard it”

We arranged for her to come back a bit later. We arrived together and as we both stepped over the threshold something odd about the scene took a while to assimilate; my brother was sitting in his usual chair reading the paper; radio on full blast, cats winding about his feet waiting to be fed, the carpet around him a strange sea of shattered green glass. It seemed to have covered the whole floor.

“Blimey darling, did you have an accident? Are you alright? Did you just do that this morning?”

No, he says, last night. Before he went to bed. So he must have just walked over it to get across the room. I can see pieces everywhere, as if the glass had exploded. There are small glittering shards trailing through the carpet into his bedroom. Luckily he always wears his socks to bed but I fear for his feet.

It was kind of good that she saw this, I think. To know what we’re dealing with.

Anyway, her efficiency just floored me. Yes, a team of nurses would come in twice daily and administer his medications (because lately he has been dropping them or forgetting to take them when I am not physically putting them into his mouth) and help him wash, dress, undress and so on.

Feeding the cats? Washing, hanging out washing, putting out the rubbish, making his bed?  Of course. Will he want a sandwich making in the morning to leave out for lunch? They’ll do all that.

In the evening they work in pairs, a man and a woman, usually one of them a trained physio so (in theory at least – why can’t I help being cynical?) there will always be expert assistance on hand.

I can hardly believe it. How long will this magical intervention last? They can’t say. They will do it for a period of time until the council care company can take over, but that won’t be overnight as that team will first need to come and do their own assessment with Nick.

I don’t much like the idea of the council care as several years ago they outsourced their care provision to a succession of really dodgy agencies, most of which have since in turn been closed down. 

I used to encounter some of them in the course of my work and was always frightened and infuriated by the lack of training, common sense or basic courtesy that seemed to be the norm. I didn't blame the carers themselves so much as the overriding sense of a cheap deal: the fifteen minute call, the bare minimum of human contact, ticking the boxes for the least amount of work you could get away with for the money. 

However - I think we’ll have to see how it goes.

At the moment I’m so grateful for any help at all.

Time off.

On Thursday I had a day off and it was a revelation. I mean, a proper day off, the kind where you just let yourself go with the flow and do what you want to do not what you have to, must do, ought to do. It’s been a while.

I walked down a street that I pass all the time, full of cute and quirky small independent shops. They usually whittle past in a blur while I’m hurrying to the next thing or deep in worry. I never normally have time to look at the window displays never mind go inside.

I can remember being in that state of continual resting emergency when I had a very young baby, or once when I worked on a particularly stressful film set – aware of the world out there but so not in it – ticking like an overwound clock, always another crisis to deal with and no time to engage with anything else because that meant relaxing and that would be fatal. Never off duty, constantly on the alert for the next predicament.

It’s like a continually contracted state where you just cannot allow yourself to expand your sensibilities. Like being a permanent diet – no fun.  *

But today something inside me unfurled – a permission to go off duty.  To stroll along a charming street just browsing, encountering, being a flaneuse.

Came home with spanakopita and horta from the Greek deli and a polka dot mug for my morning coffee (I’m drinking from it now) Sniffing the exotic scent of amber on my wrist from a tiny boutique full of pom-poms and pebbles. It felt like being on holiday.

And I had conversations. Something about being off duty for the day sent me out into the world with a different head on and I kept bumping into people and having lovely connections.

None of them knew about my caring role, we talked about other things. A couple of times I felt the subject rise to the tip of my tongue to be aired because it simply felt like the biggest thing anyone needed to know, and then the moment passed and afterwards I was glad.

This new phase, with Nick living here and his illness progressing, is tough. So many changes and new responsibilities – it’s inevitable that it is dominating my life because it IS big. It sucks up all the time in the world if you let it. And suddenly everything else feels very small.

But it’s not the only thing. There is more to life than this.

I refuse to be defined by my role as a carer. It’s not the only thing about me, even if it mostly feels like it at the moment. I will not let it define who I am. And somehow I need to find a way of life where it won’t define Nick either.

*Not that I would know. See “spanakopita”.

Fun Times

“Let’s just buy orange food today”.

We were in our mid twenties, first Christmas without our mum and our dad had not long met our stepmother and opted to spend the day with her. They had known each other for three months. 

We were torn between great happiness for him because he had been so selfless, so lonely for so long as my mum gradually deteriorated. And total heartbreak because we had lost our mum and Christmas time had suddenly made us feel like little kids, while our dad was swanning off with a new family as if all our years together meant nothing.

We felt the need to cling together the way we always had. Defiant, putting on an insouciant grin and turning it all into our own private joke.

So we went to the supermarket and skidded through the aisles on runaway trolleys like the delinquent children we were – home alone without the parents.

It was a supermarket with orange branding and plastic bags so that became our theme.

We bought satsumas, orange peppers, Red Leicester cheese and chilli barbeque kettle chips and got tipsy on cheap sparkling wine (not orange) watching crappy TV. Crunchie bars for pudding. And silly silly jokes and rolling on the floor laughing.

Being with Nick was always fun.

The rubbish thing about being a carer (like there’s only one rubbish thing) is that you get bogged down in the detail, the drudge and the doo-doo. You’re doing things for someone, not with them. 

Much of the time when I do try a quip with Nick, he doesn’t hear or his slowing brain finds it hard to take in new information. I get used to not having our jokes anymore. But then every now and then he will surprise me by saying something so funny and so dry that it cracks me up. Just out of the blue!

I know that witty, fun side is still there somewhere. It just maybe doesn’t surface as much as it used to but I mustn’t forget. It might seem hard from here but we will find some new things to laugh about.

Distress Flares

I wake and hear the familiar sound of Nick juddering and pitching in his sleep downstairs. Then I realise we are alone in the house and it’s just the noise of builders working on the house across the road.

It has been an intense and stressful week but we all got through it and last night my brother went home to sleep in his own bed.  

Just as I had resigned myself to setting up a temporary hospital billet in the back room here, with whatever fallout that might bring for the rest of the family and our collective sanity (but what choice did we have?) we got the go ahead that Nick could move back in to his flat. The joists were dry enough after all to put down a floor and fit a new loo. Not fully finished yet but useable.

Oh my god, the relief.

He is really happy to be back in his own place and sleeping in his own bed, waking up and going to sleep when he wants to and not having to worry about stairs or anyone else’s agenda. And we can relax. A little bit.

But. This is only a brief hiatus, I know that, before the next crisis. We can’t relax too much, we had better get ready.

And I feel a little bit more frightened inside. I sent out so many distress flares and nobody answered except the Active Recovery team. And thank goodness for them, and God Bless the NHS. 

But all those agencies who I thought were supposed to support people like us, vulnerable and struggling and not sure what to do or how to cope?

Not a whisper from our Huntington’s Advisor. No response from Housing. Nothing back from the insurers after all the soothing reassurance that they’d find an alternative property and get back to me within 48 hours.

But specifically, not a whisper from our HDA advisor. Their motto is “We’ll be there.” But they weren’t. She wasn’t. I felt really alone. 

What I have realized is, sending out distress flares when you are also looking after a vulnerable person is a two-handed job. You need to scream for help and then you need to keep screaming until someone hears you. But it’s very hard to do when you are physically with the person, running around after them with full waitress and valeting service and still want to give them some semblance of a normal cheerful life.

I resolve to be very careful in future about what to ask and how I use my available energy. Try to have a breather today because it’s Sunday and start again tomorrow.

Punch Drunk

So much happening, so little time to write. Or do anything except get on with the next thing. 

Tuesday: we discover that Nick’s flat may continue to need drying out as the joists are still too wet to be able to lay a new floor. So he continues to live at ours, sleeping on the pull out bed, but now with the added attraction of an arm in a sling. Simon and I are already dropping with fatigue as time sucks away into a vortex of propping Nick up with cushions to get him comfy, fetching him drinks, putting on the TV or radio programme that he likes, at eye-watering volume, keeping him company, making dinner and helping him eat. We wait on him hand and foot because although very stoic, he is in pain and even more unsteady than usual and we're terrified that in this vulnerable state he might hurt himself further. 

Wednesday: The social worker arrives to find me in tears of frustration as I’m crouched over Nick trying to re-assemble the blue hospital sling. It’s got more straps, rings, buckles and Velcro than your average piece of climbing equipment and I’ve never been any use at putting together that kind of thing. He thinks he understands how to do it but his fingers won’t work. Even the social worker scratches her head. In the end we go back to the foam sling given by the X ray department.

I thought she must be able to see the impossibility of the situation at once, that none of us are equipped to deal with a long-term house guest with such complex needs, and that Nick’s safety here is compromised.

She did a very comprehensive assessment – though I wanted to kick Nick in the shins every time he said blithely, Yes, I’m coping very well here, Yes the arm is healing already, and No, I’m not worried about falling.

The upshot of it all was that there is no respite facility immediately available and they will not grant it anyway without an end date (when Nick might be able to get back into his own flat) so he must continue to stay here until further notice. The Active Recovery team will come here to install a bed and a commode so he doesn’t have to go upstairs. But our front room is a thoroughfare through to the kitchen and garden and the back room is currently a no-go area awaiting building work for a damp back wall. It's clear that Nick should not be trying to manage our stairs and that he needs to be supported and safe but it's our front room. Where are these things going to go? 

But all social services can do is address the practicalities – is the person actually homeless? Or are they in a family home with someone on hand to attend to their personal care and general nourishment, even if it means that someone having to give up their job to do so? If they are not safe on the stairs to the upstairs bathroom, why, install a hospital bed and a commode, right here in the living room. I am not squeamish about actually having to deal with commodes and all that, I already clean Nick’s loo several times a week, but the sheer relentlessness of having to do a carer’s job on top of everything else in the middle of our family home, our sanctuary – well it just feels unbearable.

Oh but we’ll get a team of carers coming in to do all the changing and cleaning and Nick’s personal care, says the social worker, they can come four times a day.

That feels even worse. Even if it’s people we already know and trust, it’s such an invasion.

Teenage son loves Nick but is terribly upset. “I don’t want strangers coming into our house! If you put a commode in here I’m leaving home. How am I going to invite my friends round? “

I have to go into the garden, look up at the sky and take a few deep breaths. Nick living here for the foreseeable, me on call 24 hours a day and our house turned into a nursing home. I know only too well that this just happens to people, ordinary people like you and me, only you never think it will be you.  Of course I know this, it’s part of my daily work. No-one likes it. It’s the most horrible and soul-destroying invasion of privacy and dignity and who you think you are. But seriously, what is the alternative?