Saturday

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. 


Tuesday

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.




Saturday

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”.









Tuesday

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.

Sunday

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.

Friday

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?



Thursday

Breaking News



We all gasped when Nick took his shirt off for the GP. The doctor tutted when she saw the size and colour of the bruise, which had now spread like a bottle of thick bloody ink all across his neck and shoulder, and recommended that we go straight to the Minor Injuries Unit at the hospital to get an X ray. She thought it looked as if it might be a broken collarbone.

Nick was sure it was just a bad bruise, he said it had been extremely sore yesterday but thought he would recognise an actual fracture – but then again, I thought, he had not realised that he’d broken his arm a couple of years ago.

We zoomed to the hospital and miraculously the department was almost empty so we got seen quickly. All the staff were so efficient and kind.
Nick had the X ray and I stood behind the screen and watched; it didn’t look quite right to me but my A&P is a bit hazy and there was no obvious snapped matchstick type breakage that I could see. However when the nurse came to give us the results she showed us the X ray image and the position of the collarbone compared to what it should be, and yes it is certainly broken. With two broken ribs thrown in.
Strong painkillers dished out and a temporary sling that Nick said immediately helped as it stopped the arm moving. Then home, for some major TLC and a dinner that Nick could eat mainly with his left hand (no noodles for a while) while his right is out of action. Though lately he has been asking for help with eating anyway, as he no longer has the co-ordination to chase the last quarter of the food around the plate and into his mouth. He lunges forwards as I help him with the last fork or spoonfuls and I remember the way we did this for our mum.

Next day, Fracture Clinic, where two consultants wince at the X-ray and confer at length. The trouble is, that bone would normally need an operation to set it straight, but in the case of someone with chorea, the constant jerking and jiggling would most likely just tear apart any delicate internal sutures. They are really not sure that it would work. The alternative is to strap it up as best they can and leave it, and they’re not sure about that either. In the end they agree to leave it another few days (apparently there’s a two week window of opportunity for re-setting a broken bone) while they consult the neurological specialist, and will make a definite decision next week. In the meantime, Nick has a much fancier and firmer sling in a discreet dark blue, with a thumb strap to keep it in place. I worry about his arm suddenly jerking and breaking his thumb but so far it seems fairly secure.

On the way home we joke that if they do operate, Nick might have to wear a lampshade collar round his neck like a dog while he’s healing, to stop him scratching.

Monday

Worse things happen at sea

And yes, of course they do. We’ve all watched the news. 
But here on dry land we’re struggling. Really struggling.

Nick has now been with us for a week. A week of sleeping on the pull-out bed, never really alone, constantly watched over because of the changes in level and the steps and the stairs, waited on hand and foot (literally – I have been washing his feet every day and rubbing cream into the dry, gnarly skin on his hands from the scuffing of his constant movements) enjoying our company I think but also having to accommodate to the rhythm of a different household where things just work differently.
I feel worn down by the constant demands of an extra presence in the house who generates so much more work but can do nothing to lend a hand, who can’t help knocking things over even when I think I’ve moved all the delicates, who has broken two chairs and a door handle in the space of a week, who through no fault of his own has displaced the orbit of an entire household. 
I'm exhausted by the sheer amount of continual drudge and it's hard to keep doing it cheerfully when it never effing stops. 
But more than anything I’m raging that I wanted Nick to be independent and to be able to get his own meals, get up and go to bed when he wants, watch TV or listen to the radio without having to ask for them (he can’t work our controls) go out when he wants, just have a bit more time. He has been such  a fighter – and now he’s just sitting there having it all done for him, I worry that he’ll just give up.

Finally the thing we’d been dreading did happen today and he fell downstairs, tumbling headlong down six steps onto the hard floor below. He falls easily like a child, like a paratrooper, but has bashed his head and badly bruised his shoulder. I had done something I rarely do and taken the car to get to work so they didn’t go straight to A&E but Simon phoned 101 for help and had a lengthy conversation with a nurse who advised an ice pack and paracetomol.
He’s in pain though, and I’ve found an online appointment with the GP tomorrow.
This means rescheduling the social worker who suddenly materialised last thing on Friday afternoon saying that she’d just been allocated to Nick’s case – which felt like a miracle just when we need it.

However I’m not holding out any big hopes as when I said, Oh thank goodness, explaining the situation that Nick is currently sleeping on our settee in a house that’s just not safe, she seemed a bit non-plussed and said the agenda she’d been given was to discuss his care package and whether we could find something cheaper. She means the council carers. I know them because I’ve had so many run-ins with them in the course of my own work – the ones that throw their fag away as they walk through the door, not knocking but just striding in. The ones that ignore the washing up and the cat shit and the unflushed loo, who write in the notes that they have administered meds, “had a lovely chat” with Nick and nothing else was needed, and then I come in and find two of the tablets on the floor or rolled into his shirt pocket.  


Anyway, the really scary thing is that he’s hurt himself and we don’t know how long he will have to be here in danger of having more accidents, and even when (if??) he does get back into his own flat how long will he be able to live like that….these are the things that keep me lying awake in the small hours, just worrying. 

Saturday

Socialising

I want to kiss the hand of anyone brave enough to invite us over with Nick too, because taking him out presents so many variables. Access – will it be easy enough for him to get to? Will he be comfortable (absolutely no guarantee of that and sadly, he is rarely comfortable anywhere, even in his own special chair, for very long) or will we have to make excuses and leave early? Will people be kind and understanding? Talk to him like a human being? I know my friends are on message but there are friends of friends who might not be…it sounds awful but you just don’t know.

And then I worry about friends’ precious possessions, their furniture, their pictures on the wall, their bathroom fixtures and fittings...in our house everything is knackered anyway or moveable and in the end pretty much expendable, but I worry about him charging into someone else’s space like a bull in a china shop. I worry about safety and about him hurting himself.

So even though I long to get out of the house, go out and meet people, let Nick have different conversations and just shift our reality, it’s not exactly relaxing.

Sometimes it seems easier just to stay at home.

Friday

The Power of Connection

A friend pops round to visit. She had only texted to catch up as we hadn’t connected for a while and she probably hadn’t counted on me replying straight away with an anguished blurt about how freaked out and frightened I was feeling and how lonely and exhausted. We are old friends though and we don’t have to mince words. But I am not used to knowing how to talk about my feelings anymore, because frankly Nick doesn’t need to know that I’m feeling so stressed since he’s been in Sheffield. God knows, he has enough to deal with.
So I immediately send a second text apologizing for my outburst.

She comes over for a quick cup of tea and Nick perks up at once. His involuntary movements seem calmer than usual and they have a really nice exchange. She’s one of those people who instinctively draws others out and asks the right questions and I see Nick almost as his old winning self. It’s so good when he can chat with people who just look him in the eye and talk as equals. It’s sad to say but that isn’t always the way. I do think some people are a bit scared and I really don’t blame them. Half of the time I’m scared too. But when a relaxed, equal conversation happens it seems to just smooth everything else out and makes things feel Ok again. Manageable.

There is always something.

Monday 3rd July
Just as I thought it was all starting to settle down a bit and we could begin to relax, this happened. And without wanting to seem pessimistic, there is always something isn’t there? Something else always happens.
Tidying up at Nick’s and cleaning his bathroom on a Sunday afternoon, I notice water on the floor around the toilet pedestal. Mop it up, replace the loo roll unraveled from its holder, disinfect everything, put the dirty cloths and towels in the laundry basket, on to the next task. But later on I notice that there is still water on the bathroom floor and discover that there seems to be a leak coming from the cistern. Make a mental note to call the landlord first thing in the morning, thank my lucky stars that we have tenants’ liability insurance, forget about it and carry on.

In the morning it’s worse. The towels I put around the cistern and loo are sodden, so I call the landlord. No-one answering so I leave a message. Nick and I need to go out on some errands and we have a pleasant time in town, me pushing his wheelchair through the pedestrian precinct in the sunshine to get his glasses fixed. All seems well. When we get back to the flat, though, I can’t park as there are cars and a big pick up taking up the whole forecourt area. I let Nick out and see him talking to the landlord who is looking grave.
He’s with the builder and plumber who maintain all his properties; we’ve already met him a couple of times because in the first two weeks Nick pulled the sink pedestal away from the wall which caused the first leak. (He’d pulled the towel rail off in the first twenty four hours.) Then he did the same thing again so this time the sink had to be boxed in to the wall.

The leak is much worse than we first suspected and water is pouring in to the basement below. It's inches deep. Unfortunately the floor between is concrete and they can’t find the source of the leak without taking up part of that, and probably getting in a specialist plumber with a thermal imaging camera. They’ve called their man but he’s working away and won’t be available until the day after tomorrow. In the meantime the water has had to be turned off - and the power. 
Is there anywhere else your brother could go for a few days?”

Already the worst-case scenario is being raised that if water has got significantly under the concrete flooring and the whole thing has to be taken up, then it will mean quite extensive repairs. Possibly involving the flat being shut down for months. They tell me this because they think we need to know it’s a real possibility. However, let's be optimistic, they say, and hope that the damage is not too bad.

In the meantime Nick will need to come and live at ours. Where else could he go? We haven't even got a spare room but of course he'll come to us for the night. Maybe two nights says the landlord, just to make sure things are properly dried out, and I cling to that optimistic timescale. Nevertheless, the very thought of Nick becoming suddenly homeless is a frightening prospect. 

And I suddenly see that this dream location of a flat just two minutes away, with easy access to everything and a nice garden for the cats, has been just a tiny hiatus in what is probably going to be a headlong decline. For all its stresses, it’s been such a perfect place but I can’t pretend it’s going to last.




Thursday

There is no Normal

It was difficult enough adjusting to my brother living so close by. Now he is living with us, in our rickety Boho house with no spare room, I am finding it hard to breathe.
All the things that made our house so charming and quirky – its precarious steps to the front door, its funny changes of level in flooring and the steep narrow staircase, all these things are potentially lethal for someone like my brother. The loo is upstairs and I'm terrified that he will trip or fall on the stairs or in our clapped out bathroom that I have been longing to replace for years but have never quite been able to afford or get round to. Until you see him swinging madly from wall to wall just trying to walk a few steps, or feel the sheer force of his weight when he falls, you might not understand. 
Our original mid century dining table and chairs, dad’s pride and joy in the 70s, on their last legs after decades of children swinging on them, just about able to bear my brother’s weight but I hear them creaking and fear for his safety. He’s sleeping on the sofa bed in the front room; we have previously given him our own bed and slept downstairs ourselves but Simon has a tough week at work and we made the executive decision that he needed our firm comfy mattress more than Nick – who these days drinks so much that he falls into bed like a stone.
Nevertheless. This is not a safe place for him to be for long.

And I’ve not even mentioned the sheer relentlessness of having to wait on him like a maid. At home he can just about shove a ready meal into the microwave but he no longer even boils the kettle because these things are becoming too difficult for him as well as dangerous.
Or the very real fear that if he stays here for long, he’ll do the same to our plumbing too; smash the cistern, dislodge the taps, pull the banister off the wall, dislodge the sockets, break yet another precious cup or dish. It’s all just stuff, I know. But when your world is gradually falling apart around you, it’s nice to have your stuff.

Social Services do not see it this way. As far as they’re concerned, my brother is not homeless, he’s with family, getting all his needs met, it might be very far from ideal but they do not see it as a problem.
By providing so much help, by tidying up after him, cooking his meals, doing his washing, collecting his meds and taking him to appointments, by doing the 1001 small things that I do every day to keep him afloat, it’s one less person that the welfare state has to worry about. And fair enough – of course there are people who have no-one (I’ve seen them for years so I should know) and they take priority. But I didn’t realize to what extent we’d be ignored if if it looked as if we were managing.
We are managing, but only just. By trying to make life happy and pleasant for Nick, it seems I have further estranged him from the services that he is soon going to need.
I think I have really shot myself in the foot.



Anxious. Lonely. Scared.


I wake up panicking and find it hard to unclench the ball of anxiety tightening in my chest. I meditate on the image of a flickering candle flame and try to still the quiver into a steady centre but it won’t. Nothing really eases the anxious feelings except getting up and just doing something, usually the same small repetitive endless bloody tasks like wiping the toothpaste splats off the mirror, replacing the loo roll that no-one else does, feeding the cat, washing dishes that seem to accumulate mysteriously overnight, blah blah blah – and many other more unsavoury tasks that I won’t dwell on (boys and cats, that’s all I’m saying) but there is a perverse satisfaction in tidying away their traces. At least they are things I can do something about.

Mundane activity kind of eases the worry (when I'm not too absolutely knackered) but then again it just pushes the source of anxiety back into the background and much of the time being busy is just a tranquilliser and it doesn’t address the root cause. 
Which is –
I worry about Nick all the time. How much worse he seems to be getting. I realise that however hard things seem now, probably this is as good as it will get and we should make the most of this time together.
Is he happy? I don’t know. Left to his own devices he seems to spend so much of his time just slumped in his chair staring into space. I want to make his life as happy and loving as I possibly can and yet nothing I ever do will fix it. Whatever I do will not be enough.

I worry too that caring fills my head and takes up all my available energy and it is becoming very hard to have any kind of life outside this bubble. The support network I envisaged creating for Nick, for him to have some friends as well as to take the pressure off me, well that isn’t there. I have been too solitary, too caught up in my own life and haven’t nurtured those connections.
It’s not that I don’t have friends – but they are all caught up in their own lives too and it’s a big enough deal to make arrangements to see each other let alone to organise social activities that could include him too. A lot of people really just can’t handle it. I see that it takes a brave friend to take it on.
So, no support system. I hadn’t realised how quickly that can fall away, and without the carapace of any group or organised activity it is very easy to become isolated. I feel I am slipping slowly out of sight.
And that’s me – an able-bodied person out in the world with connections and neighbours and friends and a job to go to. I can skip down the steps, go for a swim, drive a car. Phone someone, write a postcard, nip to the shops, have a chat on Twitter.
What can it possibly be like for Nick, who has no other options?