The Fabulous Halloween Party

We haven't really celebrated Halloween this year. I wanted to do something with Nick but he is tired and says he wants to have a quiet night watching TV. So I'm spending the night in a more traditional way, stroking our black cat and sitting quietly for a while under the stars, thinking about our family ghosts and one of my favourite childhood memories from this time of year. 

When I was ill in bed as a child I’d beg my parents to read to me from an ancient copy of Grimm’s fairy tales.

“Read me the wicked fairy book, mummy! Again, please, daddy!” 

Delirious with fever, I’d lie in my rumpled sheets while toads oozed from the pages to hop around the bed, and outside the window flying horses flared their fiery nostrils, ready to bear me far away into the starry skies.

Yep, I was a weird little kid. I think my parents worried about me a bit and tried to discourage my occult leanings…as one day the book mysteriously disappeared and I only found it years later, going through old boxes in the wardrobe after mum had died. 

So it was remarkably sweet of them, if not a stroke of absolute genius, to come up with a stunt for which I will love them all my days.

Obsessed with ghost stories, potion making and Egyptian mummies, I felt it was only natural that one morning the post brought an invitation for me, and one for my brother, to attend a Halloween gathering. The invitation came on orange paper cut in the shape of a jack o’ lantern.

The date: October 31^st. The time: 7 o’clock. The place: “The Witches’ Coven”.

But of course.

Only after excited checking out with all our friends on the street that everyone else had received an invitation, did someone point out that we didn’t have the exact address of the witches’ coven, did we?

I wasn’t too bothered, I was sure we’d be able to find it. We had a week to go. We’d think of something.

Anticipation tightened in our chests – the thrill, the thrill! It was the 1960s and trick or treating was something people did in America, not in suburban Sheffield. Halloween then was low key, nothing like the industry it is today. People didn't really have Halloween parties. Witches' hats were made out of a cone of black paper and we had never even seen a pumpkin. 

But I felt absolutely in my metier, and all week the electric excitement running through our gang was contagious. It was all we could talk about. But we still didn’t know where the witches’ coven was.

We looked in all the obvious places – the rough ground behind the church being first suspect, but among the rusty tin cans and blackberry bushes there was no sign, no clues.

Then the big tree beside the sandpit where Mr Groats the ghost lived – not a genuine ghost, you understand, we’d simply invented him one day as a character in one of our long make-believe games. Nothing there either. 

Two nights before Halloween we were getting restless. After tea we all set out to look in earnest. The clocks had changed; it was getting dark. We carried on looking. Now venturing far from our familiar neighbourhood, lit by orange street lights, we began knocking on people’s doors.

“Excuse me, do you know where the witches’ coven is?“

until eventually somebody must have recognised one of us and phoned our parents.

Our parents, collectively, went mad. It was after ten, pitch dark and way past our bedtimes and they’d all been frantic for hours.

“You could have caught your deaths of cold!” shouted Iain’s mum. 

Next night, straight to bed after tea and not another squeak about witches. Nick and I felt subdued. But as Halloween day arrived, the angels – or the witches – took pity on us.

When we called for Robert on the way to school, his mum said casually, “If you’re looking for the witches’ coven, try looking for the house with a turnip lantern in the window”

And she said we could come back to their house for tea, which was always a star attraction because we could feed their guinea pigs and be messier and noisier at Robert’s with his two little brothers than at anyone else’s house.

And so, later that evening with mouths full of Robert's mum's bonfire toffee and clutching our ragged invitations in sticky hands, we set out again in search of the party. Brown crispy leaves crunched in the gutters, the air smelled of firewood smoke and and the street lights were coming on. We looked about expectantly for the house with a turnip lantern in the window and there it was. Just across the road. It was OUR HOUSE.

The witches’ coven was at our house!!! 

Shrieking, we belted across the road. 

The heart-bursting pride and wonder I felt as we knocked on the front door and watched it swing open spookily on its own – I will never forget it.

Our mouths stretched into oohs as our eyes became accustomed to the candlelight and took in the amazing scene: our front room turned into an enchanted cavern with yard upon yard of glittery tinfoil ribbons hanging from the ceiling, lit in ghostly green. Black slithery polythene over the carpet and my dad at the door ushering us in, eight foot high, standing on a step ladder draped in a long white sheet with just two holes for eyes. He shook hands solemnly with each child, using a rubber glove filled with crushed ice. We squealed happily with delight at the shuddery feel on our little fingers and screamed as my mum, dressed as a witch, leaped out of the shadows with snakes in her hair.

In the kitchen my granny was stirring a big black smoking pot of purple witches’ brew (hot Vimto) and a tape recording of ghoulish laughter echoed through the walls.

Anyone unlucky enough to need the lavatory was confronted by a plastic skeleton swinging over the cistern.

Nick and I gawped at the transformation of our hardly recognisable home.

My parents nearly wet themselves laughing afterwards as they recounted our total ignorance in the face of all their clues. They said they couldn’t believe we had not realised the party was happening at our house. But we were so bound up in spooky stories and mystery and the supernatural that we couldn’t see what was right in front of our noses.

We got the last laugh though. Mum was never that bothered about cleaning but she did like the place to look half decent. Little boys are experts at finding hidey holes in unusual places though, so it must have been some weeks later that she was hoovering under the stair carpet and found an unwelcome cache of festering marshmallows. Dozens of them had been hung on strings for a game at the party, and this little collection had been experimentally chewed, spat out, squished and hidden by my brother under cover of low lighting.

She couldn’t be too cross though. It had been the great party of its time and really set the bar for all future celebrations. All the local kids talked about it for years afterwards and social success for our whole family was assured.

Hallelujah (I think)

“OH MY GOD!!!!!”

I screamed when I read the letter. Only one of Nick’s hearing aids is working at the moment but he turned around to see what the matter was.

“You’ve been offered a flat! The one on X--- Street that’s just ten minutes walk away! Oh my goodness!!”

Nick is sitting calmly munching his breakfast. I want to dance him around the room. On Wednesday it looked as if we were starting the process all over again only with much less time, and three days later he’s got a flat!! And it must be OK because he’s actually got the offer in writing, so presumably whatever the OT thought was wrong with the previous place does not apply here. He’s not going to be homeless! I’m so excited and so, so relieved.

This is the property that the housing officer thought might be harder to let because it’s furnished, but advised that we should be able to get around that and it was also more likely to have the right adaptations for Nick.

What if it’s horrible inside? I want to see it straight away! We have to phone to make a viewing appointment but it’s Saturday morning and the council offices are closed.

Never mind, we will push him down there in the wheelchair later to show him where it is. I have a rough idea as I often walk through that area on a short cut, but can’t quite place the name of the street. It is really not far, though.

Cut to today, Tuesday. We have a viewing arranged for this afternoon. What will it be like, and please please please let Nick approve. What does "furnished" actually mean? 

Is it going to be tiny? Will there be room to swing a cat, in fact will the cats even be allowed? I have to curb my impatience. Soon enough, all will be revealed….

“How Exciting” says Nick.

I’m not sure how much of this process has really sunk in with him. On Saturday night over a celebratory glass of fizz, I expressed again how very relieved I am after these last six weeks of anxiety - the clock ticking, the calendar pages flying by, the landlord drumming his fingers and still nowhere to live. Nick looked puzzled.

“I didn’t know I was being evicted? Who by?”

All I can say is, it’s testament to the effort I’ve made to deal with the situation without making him feel he’s done anything wrong, transferring any of my own massive anxiety to him. 

I’ve obviously done a VERY good job there! You kind of have to laugh.  

Desiderata

For Kate

And all the lovely people I talk with on Twitter.

I have a folder full of funny cuttings that I sometimes turn to when things are not going well. It’s enormous – grown fat and unruly over the years with newspaper cartoons that once caught my eye, funny photos, magazine articles that made me laugh, old Beano comic strips and ancient pieces from my dad’s 1970’s Punch. Nearly everything in it still cracks me up.

Among the funnies there are a few bon mots scattered about, little snippets of “chin-up” wisdom, a poem that my mum loved, and today, I found this - “Desiderata”.

There was an achingly terrible, Gorgonzola-ripe sung version of this in the charts when I was growing up, so it didn't have a good start in life for me.

But I had a copy in my folder because an old friend once asked me to write it out for her as a piece of art, and I have grown to love these words. It’s not a funny – but it does have the same effect of helping me raise my head a bit higher on a trying day and finding some perspective in the scheme of things.

Translated, the tile means: “Things wanted or needed”

I think it could almost be the Carers’ Prayer.

Anyway, it may be cheesy but reading it this morning made me feel better, so who can argue with that?.

Here it is:

“Desiderata”

Go placidly amid the noise and haste, and remember what peace there may be in silence.

As far as possible, without surrender, be on good terms with all persons.
Speak your truth quietly and clearly; and listen to others,
even to the dull and ignorant; they too have their story.

Avoid loud and aggressive persons, they are vexations to the spirit.
If you compare yourself with others, you may become vain and bitter,
for always there will be greater and lesser persons than yourself.

Enjoy your achievements as well as your plans.

Keep interested in your own career, however humble;
it is a real possession in the changing fortunes of time.

Exercise caution in your business affairs, for the world is full of trickery.
But let this not blind you to what virtue there is;
many persons strive for high ideals,and everywhere life is full of heroism.

Be yourself. Especially do not feign affection. Neither be cynical about love;
for in the face of all aridity and disenchantment it is as perennial as the grass.

Take kindly the counsel of the years, gracefully surrendering the things of youth.
Nurture strength of spirit to shield you in sudden misfortune.
But do not distress yourself with dark imaginings.
Many fears are born of fatigue and loneliness.

Beyond a wholesome discipline, be gentle with yourself.
You are a child of the universe no less than the trees and the stars;
you have a right to be here. And whether or not it is clear to you,
no doubt the universe is unfolding as it should.

Therefore be at peace with God, whatever you conceive Him to be.
And whatever your labors and aspirations, in the noisy confusion of life,
keep peace with your soul. With all its sham, drudgery and broken dreams,
it is still a beautiful world.

Be cheerful. Strive to be happy.

Grateful

Another one of those days where things have not gone according to plan.

Trying to gather documentation for Nick's housing benefit claim. I need things like insurers' confirmation of the relocation rental and various financial details. It's been over a week since I contacted everyone but no-one is getting back to me. Why, I ask myself, can they not just pick up the blinking phone? I dial a succession of 0345 numbers. On hold. La la la. Sorry, call back later, in-box is full.

No word about Nick’s housing situation; we are unable to log in to the property shop website so last week’s bid is obviously progressing in some way – or is it?

I have left messages with the housing officer and the OT, who was going to assess whether the property would be suitable for Nick. They are both out of the office. Not heard anything yet, I tell the landlord when he asks again. When I see his car outside the flats I want to turn around and run away.

Meanwhile a blip with the mortgage on his house in the north east; the lenders have not accepted his latest payment. Why not? There was enough money in his account, I checked, so what has gone wrong? I ring to find out. It eventually transpires that when Nick signed a letter some months ago to confirm that I was his attorney and he was happy for me to discuss the account on his behalf, his signature did not match the one he made when he signed the original papers twelve years ago. Therefore they had put the whole account on ice, they just hadn’t thought to mention it to us. 

Give me strength!

“He has a progressive and debilitating illness,” I explain. “He can’t write his full name any more but the initials should match his former handwriting. If you like, I can send you medical evidence of his condition?”

A little check with the supervisor and then, yes, very sorry, the account will be re-instated and they will accept me as a representative. Apologies again. They don’t offer to waive the charges though!

On days like this I can end up with a thumping headache, madly resentful of the time spent achieving nothing, shouting at Nick for no reason and just - arrrgghh. 

But. It’s the most beautiful day – the kind of golden autumn sunshine that just lifts your heart. The cats stretch their long bodies across the window sill, basking in the warmth, Nick is eating croissants without coughing, and is ripping through the latest load of audio books I brought him. It’s such a delight to see him enjoy “reading” again – even throughout his years of carousing, hotel life and womanising, he was such a bookworm.

The morning carers have, unasked, put a load of dirty clothes in the wash and it’s all ready to hang out on the line in the garden; on a glorious day like this it will be dry by evening.

And this afternoon his old school friend Dave is coming to take him out with the rest of the old gang.

Just for a small while, the busy world around us just goes on its way and there are many loose ends and things are left undone and we are fine.

I feel immensely calm and grateful.

A Marriage of Convenience

There was an outside chance that while I was away, the fates would smile on us and I’d come back to find a potential new place for Nick to live. It was a gleam of hope.  

I hadn’t told him because it was a bit too good to be true and I hadn’t wanted to get his hopes up, but last week the housing officer had made a bid on a property on our behalf.  

She’d found a sweet little flat, less than a ten-minute walk from here. She said it hadn’t got any other bidders because it was advertised as part furnished which was likely to put a lot of people off. I thought we could get around that and the main thing was the possibility of an accessible ground floor property within easy walking distance, but now the closing date has gone and so has the property.

Why? I couldn’t understand, if there were no other bidders and the housing officer herself had intervened on our behalf, but I had not counted on the mysteries of the organism. Over the course of each week, people bid for available properties and even if you’re number one in line at the beginning of the week, someone else’s eligibility status may throw you off the top position. It really is like bidding on Ebay, and I’ve never been much cop at that.

I rang the housing officer. It turns out that a “match has been found”.  

It sounds like a message from a dating agency! It seems Nick has been accepted for another property that we’d bid on in semi desperation a couple of weeks ago. My heart sinks a bit because in comparison to the one within walking distance, this is a flat in a not very nice part of town a good twenty minutes’ drive away. What were we thinking? And let’s face it, there isn’t really a we involved because Nick doesn’t really know Sheffield, can’t use the computer anymore and although I've asked him every step of the way, it’s been hard to engage him in the process. He looks at the pictures on the council website then says he’s happy to leave me to it. So what was I thinking? Beggars can't be choosers, is what, in the middle of angry complaints from landlord and Nick's neighbours and the urgent threat of actual homelessness - yes, even for a severely impaired and vulnerable person. 

The housing officer had said that there was an emergency facility if all else failed, "but you really wouldn't want him to go there." She sounds grim. I imagine Nick in a cross between a Salvation Army hostel and Calais. Frankly, I just have to be grateful that he's being offered a decent roof over his head.

But this place? I’m really having second thoughts. However, the match has been made and we’ll just have to see if sparks fly and hearts beat faster. My words not theirs. I don’t think the council algorithms are very romantic. In my mind, it’s more like an arranged marriage.

What happens next is that the council OT will make a visit to assess the property’s suitability for Nick’s needs. I’m kind of hoping she’ll find that it has secret steps that hadn’t been noted in the property listings, and that the bathroom has not been adapted, and she’ll recommend that we go elsewhere. 

But time is ticking on. Nick has to leave the flat he’s in now by the end of November and we have just over a month to find him a new home.

In Safe Hands

Two things happened this week that have made a big difference. I had a counselling session and I went to the Carers’ UK national conference. 

The counseling came about through our local Mind having a commitment to offer support to older carers. I think of myself as fairly young and fit and not quite ready for SAGA magazine or chairobics so I still have trouble sometimes remembering that this means me!

It was only my second session and I had been having second thoughts about going. I told myself I was too busy; it was too self-indulgent; I wasn’t sure if she would understand.

I really underestimated her because it turns out that she works with a lot of carers and also people being cared for, and she really did understand. I told her about the situation and my consuming guilt that I could never seem to do enough for Nick. To my amazement she – not in so many words but the underlying message was clear – told me to back off. Give him some space. Let go of control. Let go of trying to do every last little thing for him, trying to make it all right for him in every little way, all the time. Let him make some of those decisions. Let the council carers get on with doing their job. 

She made me see that always trying to take control, always being busy and going through the place like a dose of salts every time I go in can be a way of avoiding him too. Never having to properly stop and listen to what he is really thinking, because in my heart of hearts I’m afraid to know.

It was food for thought. Especially when I was just about to leave town for a day or two.

So, to the big city. Headed for the golden pavements of Canary Wharf for the Carers’ UK national conference, and I really did have my spotted bag slung over my shoulder. It was such a treat to be in London, to feel intrepid and carefree and actually managing to catch up with people a little.

And the conference was a revelation.

           

One of the reasons I’d wanted to go was to find out what political muscle carers could have, when so much of the time we seem to feel so invisible and weak. I say “we” from all the conversations I’ve had with other carers that voice how I feel so much of the time – lonely, scared, out of our depths and struggling. And in the broader realm, overlooked, unrecognized, unheard. The financial restrictions really don’t help either, as if we are only fit for the most lowly, lowest paid work in addition to our caring responsibilities.

It can’t be right. I have raged about it and needed to join forces somehow. Surely other carers must feel the same way or are they all too knackered to argue?  

The conference was in the kind of grand corporate venue with three storey ceilings that I rarely get to step inside anymore, all glass and polished floors and giant artworks in the lobby.

The first thing that struck me was how well dressed everyone was – like we’d all taken off our aprons and rubber gloves for the occasion, torn up our to-do lists and had our hair done. Absolutely the opposite of invisible. I even wondered if some of them were actually carers at all! 

But then – what does a carer look like? Have you got a mental picture? Because you just can’t tell. 

And the day itself – the word that kept coming up was “dynamic”. Carers UK describes itself as both a support service and a movement for change. By twenty minutes in I was sitting back in my seat knowing that I'd come to the right place. You never know if a national organisation really has your best interests at heart or if they actually can offer much hands on help for their individual members, but here was an active commitment to lobby for increased political and financial recognition for carers' rights. The Chief Exec spoke forcefully about the need to incorporate these into social policy and to push for more joined up services in all the affected areas - social, housing, health - and continue campaigning for lasting change.

She said she was meeting the new Care Minister to discuss this next week, and it is clear that she is a force to be reckoned with. It set the tone for all the discussions during the day about the national picture of care - its social and economic value as well as the individual stories and how we all manage. I heard some humbling, tear-jerking stories. Amazing that so many of us got there at all! 

I thought of Nick back home with his carers coming in and Simon popping round in the evening and everyone managing quite well without me for a few days, and I know that some people don't have that. How they find the time and energy to do stuff like this, I don't know, but it's so important. To be acknowledged and welcomed and find that you're really not alone. 

Meanwhile I ate a delicious vegan lunch and met some great people, exchanged numbers with a couple and said taraa and see you next year.  

It was an inspiring, thought provoking day. I felt part of something bigger than myself - a solid, powerful army of people who want to change things for the better. I felt as if we were all in safe hands. 

Time Off

Way back when, a few months ago when things on the horizon looked very different, I booked myself on to a conference in London. A couple of nights in the big city and a leisurely chance to catch up with extended family and old mates and see some exhibitions, what could be nicer?

Now I’m wondering what the hell I’m doing but I’ve decided to go anyway, as it’s the Carers UK annual general meeting and it feels like an important thing to to – meet other carers and in particular, survey the political landscape.

Amidst the chaos of Brexit negotiations, NHS breakdown and Universal Credit, it’s clear that social care will be stretched more than ever.

The government say that £62.50 a week Carers’ Allowance is perfectly adequate and their purse is now closed. Yet the percentage of people being looked after by family and friends is growing all the time and I fear for the future. I think it will be interesting to plug in to what other carers are saying and what kind of solidarity we have together.

Of course going away means getting everything shipshape for Nick beforehand.

He’ll have the carers coming in from Acme but though sweet and reasonably efficient, they miss a lot of things and they’re only there for three 20 minute calls a day anyway. So me going away means doing all the shopping, getting to the bottom of the washing basket, stocking up on boxes of wine and hiding them (my husband knows where and will visit while I’m away) making sure the timers are working on the TV and radio (Nick pulled them all out on the first night of use) organizing bill payments and appointments for next week and blah blah blah, all the usual endless admin – just for two days!

It’s crazy. My own house, I’ve just left in a shambles. The boys won’t notice.

The trip itself has turned into one big juggle and a squeeze as I seem to be incapable of relaxing enough to just stay with one person and spend time with them – of course not! There is rarely a chance to get away these days so I try to cram it all in, seven people lined up to see over two and a half days as well as the conference, and I’m hoping to sneak in some art too.

I think this is all part of the carer’s mentality – you forget what it’s like to linger and pause, unless it’s out of sheer exhaustion. So you just cram it all in while you have the energy and try to keep all those spinning plates in the air.  

I'm not at all sure that it's healthy. But it's what you do.

The other carers who make it to the conference will have had to prepare and juggle things in their own lives in order to get there, under who knows what impossible circumstances. 

It will be interesting to meet other people in the same boat – and I’m quite sure, people who will make me feel as if my life with Nick is a doddle in comparison. I’m looking forward to learning how they do it.

But anyway, at the moment just the prospect of sitting on the train on my own with a book feels like the most delightful luxury.  

Traffic warning

Reports are coming through of a serious sense of humour bypass on the Mel superhighway.

It’s one of those times where I just can’t seem to relax, whatever I do to try to switch off the anxiety it sits on my shoulder blades like a malevolent owl. Stretch my body, kick through the autumn leaves, find things to smile at – that owl of anxiety is still hovering. Even going for a swim and sitting in the sauna isn’t working its usual magic.

The crisis with Nick’s neighbours and imminent eviction is not getting any less acute.

The landlord and his assistant have an office in the same block and whenever I bump into them they want to know about progress on the move, and with each day that passes with nowhere else to go, the screw of anxiety turns another twist in my chest.

Nick seems oblivious. I can’t tell whether he even really understands what’s happening; recently he’s become very untalkative, monosyllabic even. I ask a lot of open questions and leave space for him to answer but he is non-commital.

Maybe it’s that insitutionalised thing I’ve seen in older people when you’ve just been in the system too long and your body and privacy are no longer your own and decisions about your welfare are made by others, “in your best interests”.

I suspect it’s also the effects of his new medications, calming the spasms of his body but damping down his mind too. It’s not easy to have a conversation with him or have any idea of what he’s feeling. I don’t want him to feel as if he’s being pushed around with no say in the matter, but his silence just adds to the pressure of trying to be his voice when I don’t even know if I’m saying the right thing.

Every night since we got the eviction notice I’ve been going round to make sure that his TV and radios are turned off (he has always had at least one radio in every room, and several CD players too) but sometimes, like tonight, I’m so tired that I can’t stay up late enough; I just need to go home, run a bath and get into bed. Nick wants to watch the ten o’ clock news, though.

He promises he will switch the TV off at 10.30 and text me to let me know it’s off, but I don’t hear from him and as it gets closer to 11pm I don’t know if he has closed it down or not, or whether he’s fallen asleep with it all blasting out. It's happened too many times before for me to ignore. 

It’s not that I don’t trust him, but the cognitive blunting of HD and the effects of the drink mean that he says one thing and does another. 

The drinking seems to have taken over his life and although it makes me dance up and down with frustration, I can kind of see why. Yesterday we looked at the new set of properties available on the council website on his laptop – or rather, I looked and he vaguely focussed on it. It’s like an estate agent’s register of properties with photos and tenant information, and filtered according to your individual need – in Nick’s case, an accessible ground floor property with an adapted bathroom. He is in band B, a priority case with an urgent need for re-housing. Unfortunately, adapted ground floor properties are thin on the ground as it is and to find one within this postcode will be a rare gem indeed. 

I’ve made a bid for a bungalow in a not-very-fabulous part of town but we are not in any position to be choosy. We’re fifth in line, though that may change over the week, a bit like Ebay I suppose. All the way through this process (which I am new to anyway and not totally confident with myself) I was explaining what we were doing and how the system works, and before I actually pressed “Bid on This Property” what did he think? 

“It looks very nice” he says. (It doesn’t) And, “I haven’t got enough wine for today. Are you going to bring me some more?”

The sodding wine!! Is that really all you can think about? I want to say, and sometimes I do. You're about to be evicted! We don't know where you're going to live! Isn’t it bad enough to have to live with this illness, when you can’t eat without a coughing fit, can’t button your shirt or put your socks on and can hardly manage to make a scrawly signature let alone write your name anymore – do you really have to zone yourself out like this, making it even more difficult to communicate or for anyone to see who you really are?

I hate being the enabler, the provider of the next fix, like a bloody methadone nurse. I do it because if I don’t he will go out and get some anyway, spending money he hasn’t got to get a taxi to the corner shop and back to buy their expensive box of high-percentage hooch, and quite possibly falling over on the way. Last time he did this he fell and hit his head and broke his glasses. I want him to be independent but just can’t bear the risk. If we do an online shop once a week, at least he has some say about what he wants and I can buy a lower alcohol wine without hazard to life, limb and pocket. I still hate it but what, honestly is the choice? He’s not going to stop. And for the first time, I am seeing more clearly why, because however upset and anxious it makes me to see him like that, it makes alcohol the main focus – not Huntington’s. He can feel that sweet fuzz of intoxication and forget about the illness, and if he falls over it’s because he’s had a little bit too much to drink. Forget about the illness for another day and just relax into a lovely blur. I always understood that it was his way of coping with something unbearable, but for the first time, I really get it.

Anyway, 11 o’clock comes and Nick is not answering his phone. I'm tense and fretting. Has he just gone to bed or am I about to get an earful again from an exasperated neighbour? I can’t relax. 

My sweet son says, Come on Mum, we’ll go over together and check, so we make the walk one more time and find the whole place in darkness, no sound at all. Inside, just the regular sigh of gentle breathing. Thank God, it’s all turned off and we can go home.  

Tomorrow, I resolve to go to the electrical suppliers and buy some timers.

Unsocial Networking

I don’t have a lot of spare time to fart around online and aside from Twitter, where I’ve met some truly wonderful people I would never have known otherwise, don’t really feel comfortable baring my soul and holiday photos to the world at large.

But someone suggested that I check out an online forum for carers and I thought that might be useful as another way of just sharing some of the daily fears and frustrations that only other people in the same situation would understand.

I posted a short hello explaining a bit about my situation and what was happening with Nick; I said a little bit about his drinking and mentioned the constant, over-arching, undealable-with guilt that most of the time he was more or less housebound on his own and how whatever I did I seemed to be powerless to make life better for him. It wasn’t asking for advice or solutions – just, as with this blog and the odd wail on Twitter, saying how it is. Because for Nick’s sake (and for anyone being cared for by someone who reads this) I do think somebody has got to.

To my astonishment, one of the responses advised that I had done quite enough and it was clearly time to give someone else the responsibility and get him into a care home.

It’s not the first time someone has said that, and at least this time it was a stranger; previously, one of my friends (who had dealt heroically with her demented, alcoholic, dying father living at home and wouldn’t hear of him being anywhere else) had said the same. But coming from a total stranger who doesn’t know anything about us, it felt really harsh.

And it’s not time yet. Even if rooms in decent care homes were falling out of the sky, and even if we sold everything we had and the clothes off our backs to afford a week in one of them, Nick is still young. He’s still too young to qualify for most private sheltered housing associations, and still relatively independent.

Actually, I hesitate to type that last sentence. He’s not at all independent, and that's the trouble.

But it’s not time. The health professionals we have met so far have all said that there is really nothing suitable in our area for a man of his age and stage of illness, not until end of life care becomes appropriate. And we are not at all ready to think about that.

What do other people do? I ask. They struggle on. With the help of families, friends, carers, they live at home and struggle on. We all do our best, and none of it is ideal.

When I allow myself a clear-eyed moment (difficult amidst the constant hurly burly of the average day) I wonder if a care home would be all that different anyway.

Nick would still be sitting in his chair, washed, dressed and medicated by carers, having meals brought to him and washed up afterwards, having a sleep in the afternoon, me coming in for visits and outings but essentially living on his own in a multi occupancy unit – it’s not a million miles away from the way it is now. But it would be a quantum difference in what it represents – no getting better, no going back. We know this already but we are not ready to spell it out and it’s not time yet.

Will I reply to the harsh stranger on the forum? Say what I would really like to say which is to tell her where to go. Get banned by moderators for trolling in the course of my very first conversation on that particular platform? No, probably not. But the thought of it is strangely cheering.  

Out on our ear

I went for an early swim this morning and sitting in the heat of the sauna felt that sweet unfurling of muscles and monkey mind. Ahhhh….

Then, getting dressed and towelling my wet hair, I switched my phone on.

Bad move! Message from Nick’s landlord flashing onto the screen, telling me that there have been more complaints from the neighbours about the loud music in the middle of the night, and that he is now issuing a Section 21 notice to vacate the property within two months.

We’d started having complaints a couple of weeks ago, when a new tenant moved in next door. No-one had said anything before that, though that doesn’t mean they hadn’t been bothered; we never see any of the other tenants anyway so it’s hard to tell. There are five other flats in the small block and we never meet any of the others. In the first weeks I introduced myself to a red haired girl living upstairs who seemed Ok, but there’s been no sign of her since then. I have seen post for various people with exotic names, noticed lights on and smelled cooking smells but that’s all; they may as well be ghosts.

Anyway, mindful of invisible neighbours, I have repeatedly begged Nick to keep his TV and radio down; he is so deaf, even with hearing aids, that the volume does go up. But I think the main trouble is that his bedroom has a French window opening into the garden and through the warmer summer months he’s taken to sleeping with it open.

All the other flats in the block overlook the garden. When he can’t sleep in the small hours he has a drink and puts the radio on, and I can just imagine the racket that will make because he’ll have taken his hearing aids out…

Apparently one of the neighbours is now working an early shift and is getting rudely woken by the radio blaring through an open door into an echoing open space, so you can’t blame him for being pissed off.

I’ve spent the last couple of weeks religiously making sure that Nick has shut the garden door before going to bed and a few times even hidden the key and unplugged the radio at the wall, just in case. I hate doing this. It’s not that I don’t trust him to do it himself, just that he…in his own words…forgets.

Anyway, I had spent the evening with him and left around 10.30. He was watching the news and I had rationed his wine and felt confident that I could safely leave him. I forgot to check the back door, though.

The landlord says he has also phoned the housing department to emphasise his concerns that Nick be moved on as soon as possible. Will this help our housing application? Well, yes, I’m sure, although the council bidding process is what it is and we’re already leapfrogging the system by declaring Nick a medical priority for speedy re-housing. The downside is that he may end up somewhere grotty, simply because it’s the first eligible property that turns up, and with two months now to find somewhere else and move into it, I don’t see what real choice we have. 

I take Nick out for a drive through the autumn leaves and for a cup of coffee in the park to explain the situation. Explain that we’ve been really amazingly lucky to find such a beautiful place so near to me, but there are just too many reasons why it’s not right for him now. He needs a proper bathroom, for one thing.

I just want him to understand what’s happening and not just feel pushed out and shunted around, to have some kind of choice. What does he think?

“I just want to stay where I am” he says. And oh, if only.