Our mother died 28 years ago today. She was 57 - a year younger than I am now. I wrote this memoir a while ago but it felt like a good way to remember her today, especially with memories of my brother's earlier lives so fresh in my mind. 

Portrait of Mum

The morning of my brother’s wedding we found my sister in law to be walking round and round in circles in the garden, curlers in her hair, talking aloud to our mother.

Welcome to the family, I thought. Ma had been dead for ten years but she was still a very living presence among us.

And yet, just like my sister in law who has only known her from stories, I wonder if I ever really knew my mother. She changed so dramatically while I was still quite young, so that we never really met each other as adults – certainly not as woman to woman.

So this is an attempt to reconstruct her image, looking at snapshots from a family album, noticing the changes as they happen gradually over the years. Maybe, like photos, none of them really capture the person herself but I’m glad to flip the pages and remember her anyway.

1969

My mummy has blonde streaks in her hair and a suntan. She wears pink suede shoes the colour of crushed strawberries and cream, and a suede chain belt. She does costumes for the Dramatic Society and sometimes does some acting too. In her handbag there are sticks of greasepaint with exotic names like Light Egyptian alongside her own pink lipstick, which I love because it smells of roses and it’s worn into a spindly point. I try it on sometimes and try to imagine how she could get it into a funny shape.

Most little girls have a phase as they grow up when they want to marry their dad. I think I would have liked to marry my mummy. To me as a child she is the epitome of womanliness and style.

My mummy is mild mannered, girlish and shy, though sometimes she says rude words.

Although she grew up in the city, in what is now darkest Pitsmoor, she knows the names of wild flowers, trees and birds and where to find them; which mushrooms are poisonous and which will be good to eat, and the shapes of clouds and what weather they will bring.

She sings us songs, some of them in Irish. Her voice is sweet. You can tell that she and my daddy are very happy together.

1979

On holiday in Scotland, we have just left a hotel at 9o’clock at night because my mum refused point blank to spend another moment there. Having checked in earlier, she suddenly decided that there was something horribly wrong with the room and that we couldn’t sleep there.

True enough, as we do finally check out, we discover that there has been a suicide in the room next door and as we are leaving we actually see the ambulance crew and the body being taken away covered in a sheet.

And true enough, my mum does have a sixth sense about many things, but she is also becoming a social liability.

At this point, none of us quite realizes, except my dad perhaps, that she is ill.

In Edinburgh she totters unevenly along the pavement in unsuitable heels, talcum powder erupting bizarrely from her shoes at every step, speech just slightly slurred, and a boy nudges his friend and points – “Look at her – she’s steaming”

They think she’s drunk, and she’s not – it’s not even lunchtime. We silently close rank to her defence, but we’re embarrassed too.

Her obsessions – the copious talcum powder for instance – and her sudden, frightening bursts of hysteria – these are things that distance her and make it hard for me to accept. Hard to confide in her when one minute she’s gentle and chatty and ready to listen, the next she’s off like a banshee.

I tell her my dream of one day going to New York to study film.

“Do you want to kill me?” she cries at once. “If you go to New York you will kill me! It’ll kill me!!”

 For the next three weeks and beyond – “You’re going to kill me!” and sometimes, more pathetically, “Don’t go to New York, please, please don’t go. You know you’ll kill me.”

Me: “Mum. I’m still at school. I’m not bloody going anywhere”

And so it becomes increasingly hard to really communicate about the things that matter. So few things I dare tell her in case it sets her off. So hard it feels to understand what is going on in her head, even if she would tell me.

Which means that little by little, we just sort of lose sight of each other somehow.

1989

Ma sits like a broken doll in her pink high backed chair.

“What kind of soup would you like today?” I ask her.

“Chi’en.” She can hardly get the word out.

I prop another cushion behind her back. Everything in this room is broken or stained. Ma has so many accidents.

Today she can’t get comfortable. Her voice rises anxiously as I stir the soup in the kitchen next door – she doesn’t like to be left alone for long.

My dad is in hospital overnight for a minor operation and she won’t have any truck with respite care, so I take time off and come up from London to look after her for a week.

Looking at her delicate skull under thin whitish hair that was once so wavy and rich, I feed her soup a little bit at a time with a baby’s plastic spoon and feel a mixture of emotions: pity, guilt, revulsion sometimes, love much of the time, sorrow all the time.

Ma sits day after day in her chair, staring at the television or the wall, body disobedient and battered, being helped to the toilet and in and out of bed where she lies like a lump for hours in a drugged-up sleep.

Sometimes I still can’t help thinking, For God’s sake, snap out of it! I know you’re just pretending!

But that’s my denial, not hers.

It’s just that – even in her advanced stage of illness, unable to lift a cup to her lips, unable to feed herself or eat much without choking, hardly able to speak coherently let alone write, this week while we’re here together she makes such a gesture of love. It’s as if the mothering instinct and the urge to comfort her child somehow overrides her own pain and makes her suddenly lucid again.

I’ve come home for this week in horrible misery, caught up in a stupid love triangle that feels like a torment I’ve gladly escaped from.

Ashamed to talk about it, I try to keep it from her and make my long unhappy phone calls late at night when she’s asleep, and cry when she’s asleep – grieving for her and all our lost times as well as for the fucked up relationship.

But after my dad comes home and I have decided to take a bit more time off and stay a little longer, I find a card on my bed written in her half legible useless spider’s-scrawl writing saying, “Don’t worry darling. It will all be alright. We are both so proud of our lovely daughter”

It breaks my heart. And it makes me see so clearly that within that sad shell of a body and unknowable mind, my mum is still there in spirit.

The Stuff of Life

I drove up north at the weekend to do the last bit of clearing in my brother’s house. When he left at the beginning of May, there was still some tiny question about whether he’d be back; I think we all knew really that he wouldn’t but it seemed important to leave it open to the just-in-case and the maybe.

And there was so much stuff to pack – his entire past life, really. He’d had a lot of cupboards and storage hidey-holes that I had not even known about. All full of old clothes, photographs, postcards, badges, the memorabilia of a lifetime. Lots of things I recognised from all our years together. I hadn’t even known they were there until the last days of helping him get his stuff together for the move. Seeing them was like a punch in the chest, a physical recall of the old Nick and how he used to be. Funny, lively, engaged - a collector, a cyclist, a clubber, a baker. A reader, a thinker, a dandy and a ladies’ man.

I had carefully organised all the things he now used on a daily basis, and the range was increasingly small so packing was fairly simple. But coming upon so many treasures from a time when he was fit and active was a shock, a bit overwhelming for us both, and suddenly it felt too much to move absolutely everything in one go.

It was a bit daft when we’d got a professional removal company putting everything in boxes for us on the day of the move, and it wouldn’t have taken two minutes for them to pack these things up with all the rest, but that’s how our minds were working.

So we’d left a few things behind– all his old photography and darkroom equipment; a stack of his old framed photos and our dad’s paintings; a big suitcase full of dress shirts, silk ties and beautiful suits from his days as a hotel manager. We left them as guardians of the space, so Nick hadn’t left entirely.

I have missed the drive up the A1 so much, the long straight road and those big skies gradually opening up ahead, the signs for The North and a sense of coming home the way I never feel going south. But as I stopped at the usual service station for a coffee and a wee, I could feel myself reluctant, stalling for time.

I realized that I didn’t really want to go back into that empty house. It was the house that had seen Nick’s slow decline but he’d been happy there too. I dreaded seeing it so bare and desolate.  

Nick’s ex, Nikki, was going to come and meet me there as she still lives locally and is supervising the rebuilding work. Naturally she was late – she’s always late – but it helped to know that someone else would be there.

It was a beautiful day, the key was still there in the keysafe and the front door opened easily into a room full of sunlight. Inside, the house felt calm and welcoming. Bare, and barely recognisable – such a big light space with no furniture and the ceiling stripped right back to the beam. No radio. No cats. No Nick in his chair.

Lots of dust balls and curling pizza flyers but no ghosts in the house.

By the time Nikki arrived I’d disposed of three bin bags of crap and put all the suits and the pictures and the boxes in the car. Almost as an after thought (ain’t it always the way) we opened the meter cupboard in the hall to check there was nothing left inside, and under a pile of Christmas paper was a box of ring binders full of Nick’s old letters and diaries. Letters from me, our parents and from Nikki – and that’s when it did feel as if we were encountering the ghosts of our former selves as well as his.

So many memories. Nikki said she felt a bit of a shudder as she realized that it was exactly the time they had got married, 17 years ago to the day. The richness of their lives together, all the people they had known and the places they had been. All this, still existing somehow in a parallel universe where she and Nick might have grown old together.

We put all the last bits and pieces in her car for the charity shop and went to the Grey Horse for a gin.  

What a difference a break makes

What a difference a few days make. We left home, left the city, left my brother on his own and drove two hundred miles to sit in a field for a few days at a festival.

The organisation involved in leaving Nick was like a military campaign – extra care brought in, friends persuaded to pop round and visit, everyone fully alerted as to whom to ring in case of emergency, post-it note reminders left for Nick about who was coming when…

…and he was fine. We kept in touch by text from my field in England and he was fine. Admittedly we were lucky, another day he might have fallen over or (as happened on the morning we were due to leave, and in the end we still got away) pulled the loo pedestal off the wall and caused a flood. But it all worked out in the end and I came home relaxed and almost a new person, able to separate myself from my brother’s needs in a way I haven’t been doing for quite some time. I went straight round to see him and he had drunk all the wine we’d bought for the week in the space of four days. I didn’t say anything. Just gave him a hug and his present from the festival and told him what bands I’d seen and asked about his day. It felt as if all my upset and judgement and fear had just worn out and there was no point in trying to change it any more, just use that energy instead to fight some different battles for him.

So now we’re home, it’s raining, there are still muddy boots and camping paraphernalia in most corners and the house reeks of wet washing. The cat is over the moon to see us returned and at my side like a fierce guardian in case we ever try to leave him again.

I look around at my little world and it feels as if I’m seeing everything with new eyes, as if everything has come back into colour vision no matter how tired I am physically after camping and a long drive and then going straight back to work the next day. It’s like a scene from one of those movies where a bang on the head can magically change someone’s mood and behaviour. It took some physical distance and a break from the ongoing everyday relentlessness of the situation to be able to deal with it the way I need to - gracefully, with humour and kindness and not as the screaming madwoman on the verge of a nervous breakdown that I’ve been lately.

It pains me that Nick himself never has the choice of getting away, wherever he goes his disobedient body will come with him. But at least if I look after myself and make sure that my batteries are recharged regularly, I can be a better support for him.

I make a resolve to do it again soon.

And Nick is fine. For the moment.   

Tell me it’ll be fine

The weekend – yes, a whole weekend! – is fast approaching and the date that that we set months ago is suddenly this week. Actually we set off tomorrow. We’re going away for a long weekend, so that’s four whole nights away. And we are going halfway across the country because way, way back at the beginning of the year when none of this was real, it seemed like a perfectly feasible idea. Now I’m nervous.

We’ll be leaving Nick on his own and although he’ll be having carers coming in three times a day, plus a couple of socials at the weekend, I can’t help worrying about how he’ll cope. 
Just a few weeks ago it was impossible even to think about leaving him; now he seems in a much better situation with carers, a social worker and an advisor from the neurological service on board. We’ve also seen the specialist at last, who prescribed a new kind of medication that Nick says is already working. 

He says, yes, go, you'll enjoy the break, I'll be fine. I think he might actually quite like the idea of a bit of peace and quiet after these weeks of my constant interventions and sisterly bossing, so it does seem like a good time to get away. 
Nevertheless I am making endless lists – in case of emergency contact details and whom to give them to, notes to the carers, texts to a couple of friends who have agreed to drop by with reminders of the keysafe and phone numbers, notes to Nick, labels on food containers “Eat this by Saturday”, envelopes with change in case he gets a taxi, etcetera etcetera. 

I have done a big online shop so he has enough food for the cats, ready meals, breakfast things and wine to last him a week (not sure about the latter but that’s one thing I won’t worry about right now)

I have stocked up on loo roll, washing up liquid, mouthwash, bin bags and cat litter. I’ve ironed all his shirts and trousers, turned his mattress and made his bed. 

He’ll be fine.

I just feel very odd about leaving him.

A break in the weather

So now I am officially in receipt of Carers’ Allowance, available if you are looking after someone for 35 hours a week. You don’t have to be living in, just doing things like admin, shopping, cooking etc etc. All these things I certainly do because as I believe I may have already pointed out, caring seems to be bottomless and whatever you do, there is always more.

For this I get £62.70 a week and there is a limit on how much I can work / earn doing another job, which is one of the reasons I resigned from mine.

I will discuss the political implications of this pay capping another time, but while grateful at the moment to be compensated in some small way for my role, I can see that this is murky territory for carers.

Have I joined an invisible underclass? A secret army of people who you’d never see because they never stop working, often with a low-paid job on top of caring because somehow they have to make ends meet? Who are permanently on the go, exhausted and desperately isolated but have no voice?

Will I become one of them? Not if I can help it.

Meanwhile, the NHS run Active Recovery service has now given way to Short Term Intervention from the local authority. I’m crossing my fingers as I write this but they have been marvellous - I can’t quite believe how much so.

They are now coming in three times a day to administer morning and night-time medications, help Nick get washed and dressed in the morning and undressed at night and make sure that he has something to eat.

They clean the table and slice cherry tomatoes and cucumber attractively on his plate to tempt him to eat some veg. They have – without asking – emptied the bins, fed the cats and taken washing out of the machine when the cycle finishes and hung it all up. To me that is astonishing, because none of these things were in the care plan which means they are thinking outside the box. Noticing what else might need to be done, and just doing it. I feel so grateful.

Admittedly, they are not so hot on recycling (must leave them a note) and whoever comes in the morning cannot seem to open the curtains properly. But the important thing is that Nick is safe, medicated, fed, and he has some social contact with people he sees regularly and can get used to.

The bad news is that although he had a bath seat fitted last week, he has only been able to use it once to have a shower as his sudden backward spasming almost tipped him off, and even with two carers helping, they thought it was unsafe. So it’s back to having a strip wash. Poor Nick.

He is sanguine about it in the way that someone is when they have entered the realm of medical intervention. His body is not entirely his own affair any more, he’s become used to being a patient. He’s a very patient patient at that, and I have promised him that we will find a way to get him in the shower soon even if it means going down to the circus in the park and demanding the phone number of an obliging elephant!

But for the moment, things are on an even keel and although I know it won’t last, it feels like a relief just to be ordinary and have some of that pottering time I was talking about and that blessed stillness.

Stillness

I have spent a lot of my last two days as a care worker just sitting. One of my clients, who is normally very lively, has been diagnosed with a urine infection and has slept on and off throughout my visit. Her morning carers filled me in when I got here, expecting our usual session of crossword puzzles, coffee and chat, so effectively today I am a sitting service until her son arrives to take over.

Yesterday, a different client was upset and did not want to talk, eat, watch TV, listen to music or generally interact but just needed me to sit and hold her hand.

I’ve got used to being a doer: coming into a situation and instantly assessing all the options, sussing out and flicking through what’s going on like Benedict Cumberbatch’s Sherlock. I try to create some order out of chaos, make it easier for people to find their way around both physically and mentally. I feed the budgie, load the dishwasher, listen to the answerphone messages and check the diary. I navigate the online shopping and appointment making. I deal with endless admin – liasing with NHS and social services, opticians, electricians, dieticians, housing, delousing, friends and families.

So just sitting, being still, is not my typical modus operandi. 

But how important it is for all of us – in fact, isn’t that the definition of intimacy? Being able to just sit with another person, together but doing nothing, or nothing much?

I realise how little of that these days I do with Nick. How nice it is to do that with someone: just bobble about. Hard though, when you have so much other stuff to do for a person who can’t do it for themselves – I think I am going to have to find a window in our diaries amongst the appointments and the admin, and book in some bobbling about and the intimacy of stillness.

Drawing a Line: On Co-Dependence and Continual Guilt

Yesterday I had one of those “hang on a minute” moments.

The previous evening, Nick and I had gone out for a drive into the countryside and eaten at a nice pub with stunning views and a fat old Labrador stealing chips from under the tables.

It had been a week of many meetings as his NHS Active Recovery support segues into an intermediate care package from the local authority and so he’s seen me at least once a day, every day. To my amazement the council carers are wonderful – and he seems to be seeing the same people every time so they can better understand his needs and build up a relationship. They’ve even done things like feed the cats and hanging up the washing without being asked. I begin to feel that he is being looked after well and that I can relax a tiny bit.

During the periods I haven’t been with him I have been occupied in phone calls, meetings and admin on his behalf so coming to work for a long day is in a funny way a bit of a break. I’d reminded him the night before that I’d be at work til at least 7pm so I wouldn’t see him til evening, and had popped in first thing on my way to work and left a note.

So when around lunchtime I got a text from him saying, “What are your plans for the day?” my feelings were…complicated.

He needs to have social interaction, I see that, and it is very hard in a new place with limited mobility to just jump up and meet people and make friends. So he is kind of stuck with us. But the fact is, I can’t provide him with a ready-made social network just like that. I can barely provide it for myself at the moment.

And socialising, as we’ve already said, is tricky; with the best will in the world, people aren’t prepared for him, his sudden lurching about, his not being able to get comfortable, his speech often hard to understand, his deafness. It can be exhausting trying to hold a conversation and it can sometimes feel like you are barking up the wrong tree even trying.

He is so lovely and I wish we had more opportunities to show people that. I should do more myself, invite people round, make the effort, I know – it’s just that I was gearing up to do just that but these last few weeks since his accident have taken up so much of my puff that it’s been the last thing on my mind.

I hate the thought of him being lonely, sitting in the flat on his own. Stuck in his own world, lacking the physical and mental wherewithal to break out, when I can so easily put my own plans on hold and just nip over there to say hello.

I remind myself of all the years he lived alone and how content he seemed then without any real social circle or intimates. But geography has changed things.

It’s as if that self-contained bubble he had then has suddenly burst and that now he’s so close to family, to me and all that regular interaction, he craves company again. And of course the illness makes him increasingly less aware of other people’s agendas and more – I won’t call it selfish, but just more inflexible when thinking of his own. But also, the classic apathy of Huntington's Disease as the basal ganglia of his brain corrodes, makes him less and less able to initiate things himself. 
So he does expect me to be around more than somewhat.

But it is not my absolute responsibility at all times to make sure that Nick is entertained and it is not my job to make him happy. Harsh. But true.

The burden of his expectation weighs so heavy and I don’t know if it’s really from him or if it’s my projection. Maybe he thought I had this great life, full of friends and outings and spontaneous invitations and interesting things to do – and well, I used to. But invitations have dwindled as my commitments force me to cancel or revise, and there are so many places he can’t access and conversations he won’t follow, and however central he is to my life these days, it is just not appropriate to try to shoe horn him in.

And I think – there is a place where I have to draw the line.

Food, terrible Food

Nick’s hobby used to be going out to lunch. It’s still a prospect that can light up his eyes, like a dog hearing “Walkies!”

When he was living in the north-east and still getting around on buses, he would go out for lunch at least twice a week and then text me to tell me where he’d been. Café Rouge in Durham. An Italian restaurant on the outskirts of town but just a bus ride away. A new café that had opened on the High street. The local pub, just a few minutes’ walk away, if he wasn’t feeling particularly adventurous.

What did you have? I would ask, like the mum in the Royle family.

And he would describe what he had eaten and, “My goodness!” I would say, “Where on earth do you put it?”

When I visited with the car we’d always go out for lunch somewhere that he couldn’t so easily get to on the bus and we found some great places – and some not so great. The school dinner style Sunday lunch with packet mashed potato was definitely a low point, though Nick had second helpings of jam roly-poly and custard.

As a vegan there was one memorable meal of spinach and chips (actually, delicious) as the only things on the menu I could eat, while Nick gaily tucked in to a three course French banquet. I was driving, but around half an hour in, when Nick’s on-the-shell seafood starter arrived and I realized how long this was going to take, I ordered a large glass of red wine to see me through, reckoning I’d be in a far worse state without it.

But gradually the going out to lunch stopped and when I asked on the phone, where did you go today, increasingly the answer was that he hadn’t felt like it, he’d decided to stay home and chill out. What had he had for lunch? Oh, a sandwich from the supermarket, or sometimes a microwaved ready meal.

Now he is here and living close by, it has still taken a while to register that Nick is having trouble eating. At first I thought it was the cutlery, so we made sure he had knives and forks - and increasingly, just spoons - with sturdy handles.

Then I thought it was certain foods like spaghetti that were giving him so much trouble. I mean, eating spaghetti is an art at the best of times. Then of course it was the fact that he had broken his collarbone and had his right arm in a sling so he found it difficult to use a spoon left-handed and needed some help.

But really it’s none of these things. It’s the actual act. The physical process of eating.

Like a weak baby struggling to feed, it takes so much energy for him to lift the spoon to his mouth, get the food in, chew and swallow, that he burns more calories than he can ingest. Having food in his mouth makes him cough and gag, sometimes spluttering for air, and he can’t sit still, constantly rocking himself away from the table, arms flailing.

It’s such a laborious process that he’s exhausted half way through and gives up.

“I’ve had enough.”

But he has to eat. He really needs the calories.

When you have HD it takes so much energy just to sit in a chair that if you don’t eat enough you can lose an awful amount of weight very easily and be much more susceptible to illness. But the whole process becomes so tiring and traumatic that it's easy for people to start avoiding food altogether - ravenously hungry but afraid to eat. What if they choke? Just too much like hard work. I have started to see this happening with Nick.  

So, like the mother of an anorexic child, I have to sit with him and soothe and coax so that he will accept another spoonful, and another until the plate is finished.

Yesterday I went to visit after a rare evening out. I knew he’d been to the pub with his occasional carer for a late lunch in the afternoon and had evening carers coming in who would make sure he had something to eat then.  I’d left out a plate of easily-assimilated finger foods for him, bite sized pieces of quiche and sausage rolls, things he really likes.  But when I called in next day, around 2 in the afternoon, the plate was still there, food intact under its cling film, untouched. 
What did you have for tea last night? I asked. He couldn’t remember. I scanned his fridge, work tops and shelves. Looked in the bin. The only thing that had changed in twelve hours since we’d last seen him was the emptied box of wine. He had just…forgotten. 
"Weren't you hungry?"
He shifted uncomfortably. Worse than forgetting, I realised - he hadn’t felt like it. Eating was becoming just too much trouble.

Why hadn’t the carers picked up on this or helped? I looked at their notes. They had offered to get him an evening meal but he had declined and said he’d get himself something later. They had believed him.

Now, I am not a person who ever forgets to eat unless really in extremis, but I realise that there are other weird souls who do. Nevertheless, this was a real shock.

The thing is, Nick really needs not to forget, and not to feel as if eating is a scary exhausting experience best avoided. So we have to make it a social occasion (despite the fact that it’s an alarming experience to dine with him, with all the coughing and crumbs and knocked-over glasses and spoons ricocheting across the floor) and be as calm and matter of fact and jolly as possible.

It’s a bit like having a toddler all over again: carefully choosing foods that will be manageable, enjoyable, nourishing, neither too bland or too spicy, that will not go down the wrong way. Because he’s got to eat. He’s got to keep wanting to go out to lunch and somehow – whatever it takes – when it comes to eating at home, we’ve got to start a new routine for a sociable, fine dining experience chez lui.

I’m not going to let him give up and not bother. If I have to sit with him every single night just to make sure he eats, then so be it. But it would be good to have company, too, so that he doesn't feel so isolated. So that I don't feel so isolated, for that matter.
Anyone up for a new, extreme-sport supper club experience? You know where to come.