Independence

It’s Friday morning. I’ve just taken J to school and I’m wracked with guilt because I shouted at him yesterday.  Aggression is one of the most difficult things for HD families to cope with. In the past, my rages were always directed at my husband and I’m really concerned that J and A will bear the brunt of them now.  I thought my anger was under control but the most trivial thing can lead to a meltdown.

Last night, J was trying to be helpful by bringing me my post. My new debit card was amongst the papers on the hall table and when I went to look for it again, it had gone. I shouted at poor J.  Of course, he was wrongfully accused. I had put it in the drawer in my study because I thought I’d lose it!

‘Look.. you made him cry.’ A said. ‘Go and say sorry.’

I ran upstairs after him. J had barricaded himself into his bedroom and I could hear him crying. When this happens what can I do but try to explain (again) that it’s HD not me?

Ade won’t be back until Monday! In the present circumstances, 12 hours of care a week just isn’t enough. I asked my new social worker to come round and reassess my needs. But knowing how social care budgets have been stretched and I can imagine how hard it is for R justify diverting (more) funds to a middle class woman with avocadoes in her fridge. I almost feel embarrassed asking for more help; if I were R’s manager, I would ask tough questions before agreeing to it.

When R came round, the house looked clean and orderly. The sun was shining and the newly washed windows were gleaming. At the top of the garden, the tree house my husband built for the children evoked fun family times. The children weren’t there; I forgot to mention my outbursts. My OT was there, fortunately. She has been helping me with strategies to make some simple family meals. I have laminated recipe cards with the method in a big font and tick boxes for every step. The tick boxes do work. I did manage to make a quorn bolognaise but it took so long and – as usual – I made so much mess, I couldn’t face making the meat one.

The social worker has gone on holiday. In her absence, we are all assembling evidence to support my claim. Ade is going to go through the administrative tasks she helps me with and working out how long they take. My OT has watched me making lunch and she has made detailed notes about the difficulties and distractions. I keep knocking everything over and managed to break one of the last china plates in the house. She also timed me. It took me 40 minutes to make a cheese and cucumber sandwich! No wonder I’m losing weight. It’s difficult to focus…I’m always tired. The OT gave me a fatigue diary to complete but I was too exhausted to fill it in.

I’ve changed my view about independence (again). For the last couple of months, I have tried to be good humoured about endlessly clearing up after the children, doing housework inefficiently, knocking things over and working through my laminated recipe sheets step by step. I moaned so much about this in the past and tried to get out of doing my fair share of domestic tasks. Pairing up socks yesterday, it occurred to me that I might be throwing the baby out with the bathwater. I’m trying to prove something to my husband but the argument about the unfair division of labour had already run its course.

Beware the pairing of the socks

While belatedly trying to redress the balance, I’m in danger of losing myself in domestic martyrdom. My husband didn’t marry me for my cooking and there’s nothing empowering about doing housework badly. If they do increase my hours I will use them wisely. It’s more energy efficient to ask someone to make my sandwiches, leaving me with the time and energy to focus on resurrecting my feminist magazine.

 

Looking for Ida

My grandmother was institutionalised at the age of 39. I grew up knowing nothing about her and never quizzed my dad. I was too self-absorbed to think about the ellipses in my family history. This suited him. He wanted to efface HD from the record and would have succeeded if he hadn’t got ill himself. When he became symptomatic we all started asking questions, but he remained evasive.

It has been very strange getting to know my grandmother after all this time. Murphy (as we always called my dad) was more open in his later years and probably would have told me anything I wanted to know if he’d been able to. I’ve pieced her story together with my uncle’s help. Uncle Colin, a salesman from Oz, is more forthcoming, although my aunt says he never talked about his childhood until recently. He is a larger than life character with a loud voice and a persuasive manner. He couldn’t be more different from my dad. He is straightforward where Murphy was enigmatic. Opinion is divided about whether there is a physical resemblance. I think the jawline is similar.

Colin now wants to know everything about his family.  He has spent the past year on ancestry.com tracing the line back and firing off letters to family friends looking for clues to his identity. He dug up a picture of my great grandmother who, I was pleased to discover, looks like an olden day lesbian with short hair and broad shoulders alongside her elegant consumptive looking sister who died young. But there was no picture of Ida.

By chance, last year I came across a memoir by a family friend, Peter Congdon.  A Bomb in a Basket recounts the six years of World War 2 as seen through the author’s eyes. I thought it would be good background reading, which would give me a flavour of life in wartime Plymouth. I was surprised and pleased to discover that Peter was a good friend of the Ravens and we feature prominently in the book. Peter went to the same school as my dad and his brothers: Johnson Terrace school. In the chapter Plymouth in the Front Line, he describes the Ravens. This description of Ida made me cry.

‘Reg had married Ida his wife in the early 30s. She was a strange woman with a deep voice and rumour had it she had been a nurse. Although apparently educated and articulate Ida presented as a shabbily dressed lady who was often to be seen smoking cigarettes. Her standards of hygiene, cleanliness and housework were not of the highest quality and much of the responsibility for running the home was left to Reg who was often seen shopping for the family. At the time, little did we know that Ida was suffering from a serious mental illness that was to worsen over the years.’

Ida Raven: lost and found.

According to Colin, she hardly ever left the house. I can picture Ida on the sofa  (‘in her misery’ to use Colin’s phrase) with no pharmaceutical props chain smoking while family life went on around her. The radio was always on; Ida liked radio dramas. I’ve asked him lots of questions about his childhood and I’m starting to form a picture of life in the two up two down in Townsend Avenue). Peter Congdon said it was ‘liberty hall’ compared with his house and they took turns jumping from the top of the wardrobe onto the bed.

There were four boys and they all have normal names apart from Vivian. Peter, Paul and Colin. Why was my dad called Vivian?

Colin said Ida was embarrassing. She did weird things that were well intentioned, like making a lurid pink blancmange birthday cake for my dad’s birthday and putting household candles on it. They were all sick. When she picked them up from school he was conscious of her dirty dress and wraith like appearance. Rationing meant a high calorie diet was difficult to muster and Ida ate porridge out of the packet.

They never doubted how much she loved them.

Ida spent two long stretches in Moorhaven Asylum in Ivybridge near Plymouth. Did she go there voluntarily? Colin doesn’t know. He remembers visiting her there and the smell of disinfectant. It looked like a grand country house with many outbuildings and beautiful views across the moor.  It had its own railway station and farm. I really hope it felt like a community, not a madhouse.

What was life like for Ida?  I picture Nurse Rachett in One Flew over the Cuckoos Nest on a power trip. And chemical coshes.  Did anyone there understand HD? Was Ida’s treatment plan appropriate? I was worried about ECT, which must have been popular in the 40s. Looking for reassurance I did some research and I came across a social history project called ‘Memories of Moorhaven’ which I gobbled up. The accounts of staff and patients have been a valuable resource. Some people had happy memories but there were many deaths; suicide was so common in fact, that the staff became quite blasé about it. They were always scraping people off the railway tracks.

When Colin visited, he said she’d knitted a cardigan for him and she seemed quite calm, but Murphy remembered it as being ‘grim’. Was she longing for their visits? Murphy clearly longed for mine when he was in a nursing home. The regime in Red Oaks however, was more person focused and there were no suicides. I was concerned that Murph could die of boredom. He couldn’t read, listen to audiobooks or make new friends (even if he wanted to) as HD had robbed him of the power of speech. The other residents, many of whom had dementia, would wander into his room. When we visited, he was always watching BBC rolling news with the sound turned up.

Moorhaven has now been turned into a quirky, upscale housing development called Moorhaven Village. I visited it to see whether Ida’s ghost was stalking the remodeled bedrooms. It was pouring with rain and the kids were moaning, as we were en route to a festival. They stayed in the car and I walked around trying to picture Ida doing exercises on the lawn like they were in some of the pictures I have found. The old hospital morgue has been renamed ‘Dunlivin’. Is this in poor taste? My brother Daniel thinks so. Would I have wanted to live there?

A few months ago, Colin called with some good news. He had unearthed a picture of his mother! Ida is wearing a nurse’s uniform and the picture was taken before she became symptomatic. It is here on my desk as I write. Colin says he took the picture of Ida onto the beach near where he lives in Sydney and said goodbye to her.

I just wish Ida had been part of my children’s lives, like my husband’s mother, not a low res ghost in a silver frame.

Depression

Many HD sufferers experience depression and it’s worse at the beginning of the illness and the end.  There is a lull in the middle.  When I think back to that time, I picture myself fighting with my husband and my hair.  I had a high maintenance bob which defined me, or so I thought.  When things started falling apart.  I became evermore invested in my hair, but less able to perform the complex ritual of straightening it that required three mirrors positioned at different angles and just the right amount of moroccan oil.  I always put too much on and it never looked right.

My hair was a signifier of my inner turmoil.  Last summer, on the day of the Alma Street party in Kentish Town, I spilt Moroccan oil all over my dressing table, creating a mini oil slick on the glass top.  It kept slipping away from me, like mercury when I tried to blot it up with kitchen roll.  I texted my friends to tell them I wasn’t coming.  It suddenly all seemed too much?

I was very isolated in this era.  Every few months, we would have someone round to dinner, but it never really worked.  On one occasion, I brought my hairdryer, mirrors and straightener to dinner with me.  I turned on the hairdryer and drowned out the conversation.  I was wearing a tunic dress that was too short for me which my friend was complimenting and I still feel embarrassed when I conjure this scene.  I hadn’t seen him for years.

I was mortally terrified of the encroaching darkness with no support because I’d burned my bridges and alienated my husband when I needed him most.

We were in debt because of the money I’d frittered away on fripperies.  The Vola taps were always mentioned and my expensive hair cuts.

Here was my nadir…

I thought about suicide but couldn’t think how to do it.  My dad always said he would throw himself off Beachy Head near our home in Brighton when the time came, but before he died – of HD complications – he was shut up in a care home for five years – lacking the will or the wherewithal to carry out his plan.  The time had come and gone for him.

I considered Beachy Head, but there are Christians patrolling those cliffs trying to convince those lost souls that human life is sacred.  I mentioned this to someone at CDAT (the complex depression and trauma unit in Camden) and they gave me an appointment with a psychiatrist within a week.  They gave me a combination of anti depressants and mood stabilisers, and 20 free sessions with a psychologist.

The black dog is never far away…

I’ve been in therapy on and off  for years.  I enjoyed analysing my problems and  entertaining my therapists.  The good ones saw through this strategy and seemed (or were) impervious to my charm. I lay on a couch in West Hampstead for 5 years and free associating into space never knowing whether my stories were making her smile.  This was tough but necessary.

The CDAT woman was less rigorous and daunting than Adele, more like a wise friend who empathised with me and offered helpful suggestions about how to change the dynamic with my husband.  Adele never gave me advice!  After a few sessions with Carly, I was edged into mindfulness based CBT  before I had time to object.  When we weren’t arguing about money and parenting, T and I used to argue about theraputic modalities. He thought my attitude to CBT was typically self defeating.  I thought its focus on transforming negative automatic thoughts set people up to fail.  When you can’t get rid of them you blame yourself, not your therapist, or CBT itself.  I did try one session years ago and I gave the therapist a hard time.  This one size fits all approach ignored unconscious motivations for feeling and thoughts, reducing our beautiful minds to equations on a white board.

Wisely, Carly emphasised the meditation and mindfulness elements, which did make sense to me.  I could see how developing a meditation practice would be good for my mental health.  All the evidence suggests that it works better than anti depressants for some people.  I can see why it would, but it was a tricky thing to master and I wanted a quick fix at that point.  In the ‘breathing space’ at the beginning of the session, I thought about Carly’s dip dyed hair and wondered how much it cost.  The room was over heated or freezing cold, we talked about the here and now, and made plans for a future me beyond this current crisis which seemed plausible until I stepped outside.

When was on my own again, I started feeling doomy and trying to motivate myself to ring The Samaritans.  My friend Garry took me out to a pub in London fields and tried to reassure me but it didn’t work.

Looking back, I feel very grateful to the friends who supported me when I was at my lowest.  My depression will always be with me but it’s like background music that hasn’t been turned up for a while.  The drugs do work and my low maintenance haircut has helped enormously.  I still think my husband was wrong about CBT though, but no longer feel compelled to argue about it.

What strategies has anyone else found useful for dealing with depression?

Pragmatism: Sex and HD

HD has affected my sexuality. How do I write about that? I was rapacious for years and kept pestering my husband, thankfully not in front of the children.

These days, my focus has shifted to higher things; I spend my days googling meditation retreats and Ive started having regular yoga lessons. And I’m so busy with the children and endless appointments and permanently tired. I honestly wouldn’t care if I never had sex again.

This loss of libido has (conveniently) coincided with my husband moving out of our family home. This happened gradually by slow increments. And it’s hard to trace cause and effect.

My husband has moved to a houseboat on the Regents Canal. He comes back home a week at a time and he has a bedroom here. This unorthodox arrangement suits us very well. It means he can help me with the cooking, family logistics and childcare when he’s here. And he is still supporting me financially.

When I go to bed on my own in our massive superkingsize bed I’m fantasizing about a cute little bichon friese and a labour government.

J said ‘Why don’t you ever wear the nightdress dad bought you.’ This black lacy number from Agent Provocateur was a wedding anniversary present a few years ago.

Our relationship has changed and we are no longer lovers but supportive friends.

We went to visit my husbands boat on Saturday but forgot a boatwarming present. I ate (nearly) all  the florentines his best friend had bought him and I felt a familiar twinge of guilt. A and I were amused to see the pictures the previous occupant had nailed to the wall. The ironic retro covers of erotic novels from ( I would guess) the 1960s make this feel like a hipsters bachelor pad.

The boats are an attraction that draws people from all over the world. There are curious tourists along the towpath and A and I kept making eye contact with them when they peer in and not looking away.

I am resigned to never having sex again and I’m quite glad I don’t need to think about my appearance any more. My legs are unshaved and my eyebrows unthreaded. I’m going to save a fortune in maintenance. But I can’t quite bring myself to throw away that nightdress. I have a box on top of my wardrobe which contains some relics from my former life, including the tiara (yes a tiara!) I wore on my wedding day. I will put it there.

My friend said.. ‘You never know who you will meet,’ which is true. But I am realistic about this. Who would want to start a relationship with someone with a brain disease, especially a sexless one, unless they were mad themselves?

I was still fretting over florentines when I got home.

‘Don’t worry about it mum,’ A said. ‘I ate all his posh bread sticks.’

The lure of the florentine proved too much for me…

Cooking with Raven: My Signature Sausage and Mash

You can’t write a blog without pictures of food, can you? I have come across several food blogs that made me feel quite inadequate. As for Instagram…

Yesterday evening was a milestone, the first family meal I’ve made from scratch with neither my husband’s or my carer’s help. I hoped to do this without swearing but accepted that this might not be possible. (Incidentally, it wasn’t.)

Family mealtimes signify stability and I think  it’s important for the children that I keep them going, however hard it is. On the other hand, I  feel coerced by the food bloggers and food culture generally into acting not quite naturally.

This ambivalence is probably reflected in my cooking.

I pictured us all sitting round the kitchen table eating lovingly prepared food and chatting about current affairs. I chose something easy, thinking it would  build up my confidence. I settled on sausage and mash.  If I managed that, I could move onto spag bol or stir-fry. Then if I mastered the basics I could graduate to mild chicken curry and something with olives in from the BBC Good Food website.

As tea time approached I prepared myself mentally and tried to get organised. With HD that’s the most difficult part. I can’t work out the timings. I kept looking at the back of the packet of sausages but the information didn’t go in. It’s really hard to describe the cognitive process or lack of it. One minute I was peeling potatoes and chopping them (unevenly) then in the blink of an eye, the kitchen looked like this:

Cooking with Raven: a messy kitchen and not much food to be had.

There was very little to eat. The potatoes were out of synch with the sausages, which were out of synch with each other. At some point, I opened the oven to check how the sausages were doing and forgot to use oven gloves.

‘Fuck!’

You see? I told you I couldn’t guarantee not to swear. The meat sausages were undercooked and the veggie ones were charred and hard. When I drained the potatoes they disintegrated and slopped down the sink.

My friends struggle to understand.

‘Why are you trying to do this now?’ one said.

I explained I felt guilty for leaving my husband to cook the meals when he came back from work all those times. Now I want to do it but I can’t…

‘Forget about that. This isn’t you. Give them pasta pesto and ready meals. Everyone else does,’ another reassured.

 

My son J always gives my food a good review.

‘That was delicious mum,’ he said, flashing his full beam smile.

My daughter, A, older and wiser had a question instead:

 ‘Can I go and get chips from Pangs?’

‘Get enough for all of us,’ I said, admitting defeat and handing her a tenner.

Help

I’m quite glad that I don’t look ill (yet) but this has made it harder to convince social services that I need help with many everyday tasks. We did have a very good social worker, though, who found out about HD and they agreed to fund 12 hours a week of care, which I was, and still am, very grateful for.

In the early days I had people from agencies and we found one that specialized in neurological conditions. The carers I had were all very nice, but some of them were preoccupied with their own problems. I liked C but she hated being a carer and seemed to be going through a mid life crisis. She was clearly depressed and I felt guilty pointing this out to her manager.

These days, I feel guilty about having been horrible to my carers. HD made me angry and impatient with them and my upbringing made me think that housework was beneath me. I wanted them to do everything for me, which was beyond their remit and I complained about their cooking.

‘It’s not my job to look for your things,’ one of them told me.

I wanted my carers to cook and clean whilst I worked on my projects and maintained my intellectual identity. This seemed reasonable at the time. HD has made it hard for me to multi task, so cooking was difficult. And I kept breaking things and burning myself on the cooker. But I always hated cooking even when I was well. The recipe books on the shelf in the kitchen are well thumbed… I did try for a couple of years. I made a lot of mess but the results were hit and miss. My daughter remembers the ‘biscuit cake’ I made for her birthday. I blame my mother for making me think that learning how to boil an egg would lead to a life of domestic servitude. When I was growing up, she kept me out of the kitchen and we lived on Findus crispy pancakes and fishfingers.

There has been a paradigm shift. I want to work and keep my identity as a writer but not at someone else’s expense. It no longer seems fair or respectful to leave my new carer – who prefers to be called a PA – in the kitchen while I sit here at the computer. We found Ade on a Camden PA’s website and she is a trained counsellor and lover of vintage clothes. She has such a calm voice and her outfits brighten up my day.

I help her make the tea then we go out on outings or charity shop shopping. A few weeks ago, we saw a Coach bag in the window of a Salvation Army shop and we both wanted it. We tossed a coin for it and I lost. Ade said I can borrow it whenever I want. But I never go anywhere … my clothes all lie in state in my wardrobe. I keep spilling coffee and lunch on them, so I don’t dare to put them on. As I write, I am in  pale blue fleecy Uniqlo loungewear.

Our timeshare bag.

Ade helped me to organise my life and my to do lists. She helped me to create a daily routine gives wise counsel about my mid life crisis and relationship problems. With her help, I have been able to chart a course to the future and stop wallowing in self pity.

She has been with me for two years and she feels like a collaborator rather than a carer. Ade does help me look for things and I don’t feel guilty about asking her because the context is different.

I saw J – the carer I’d been horrible to – in the swimming pool the other day which was fortuitous. When I said sorry to her and I felt like a huge weight had been lifted from my shoulders.

Remember, Remember

I tried to write a memoir  but I couldn’t remember anything about my childhood. The past is another planet. It was hard to get to even when I was well, but now it’s further away. The present has also disappeared from view. HD has affected my short term memory. I wander around the house forgetting where I’ve put things. It can three hours to get ready in the mornings because I keep losing things, finding them then losing them again. Where am I? I have no future to speak of as my life has disappeared into the cracks between the sofa cushions.

My mind is muggy; my cognitive deficit makes simple tasks seem complicated. I can’t cut a loaf of bread or change the settings on my mobile phone. There are five TV remotes on the coffee table and I can’t work any of them. I have been ripped out of time and deposited in the quotidian, a world I can no longer operate. HD has altered my co ordinates. Where am I? This blog will look everywhere for me, even unlikely places. And who am I?

I went from being at risk, to gene positive and I’m now in the early stages of the illness. My personal drama is just beginning; my tally of losses is small and some impairments more upsetting than others. I need to eat all the time. I’m always hungry and hate thinking about food. And I’m demotivated and feel guilty about taking an hour to get out of bed.

HD is an illness of mourning; you lose everything slowly enough to be fully conscious of every loss. Will I learn anything about the human condition along the way? It would be comforting to think so. The illness memoirists certainly think they have something important to communicate to all of us. Does my illness give me special insight? I wonder whether HD will also be an opportunity for personal growth.

Step by step, I am learning to be independent. I have small window to do this, but I am determined to detach myself from my husband. I don’t text him every time I spill a cup of coffee, like I used to or send mayday cries for help in any other medium unless something really bad has happened. T is often away and I used to call compulsively as I was anxious about everything and moaning about the weather. Now I’ve really got something to moan about it sounds the same to him. So I must keep the lid on it. Rather late in the day, I need to learn stoicism.

Facing a long, degenerative illness, how can I do without it?

It’s not what happens to you, it’s how you react to it that matters according to Epictetus,  Stoic philosopher of the early second century.

Whatever else happens, I want inspire my children, and be at peace with myself.

Misspelt and Misunderstood

I have a genetic illness that no one has heard of. I used to quite like being special but now I just wish I didn’t need to spend so much time explaining myself to healthcare professionals.

Neither my GP, my carers or my therapist has heard of Huntington’s disease. It is often misspelt – the t mistaken for a d – like the town of Huntingdon in Cambridgeshire.

As far as I know there are no living celebrities with HD and only one dead one. I was perversely very pleased to read that the folk singer Woody Guthrie had it, but less so when I read that his mother was committed to the Oklahoma Hospital for the Insane where she died from HD complications in 1939. Guthrie was 14 at the time.

Was Guthrie’s compassion and fellow feeling born from this experience?

Folk singer Woody Guthrie inherited HD from his mother.

I hope my two children will inherit compassion, not my malformed gene.

I’ve lived with HD for a while without writing much about it. I did try a couple of times, but ended up painting it black like the Rolling Stones. Depression is one of the symptoms of this illness not a response to it.

I do have a pressing need to communicate something about my predicament. But how can I trust my judgment or know what my motivation is? People often say they are writing to help other people in their situations or to inspire the general reader. I’ve read a lot of illness memoirs, for business rather than pleasure and the ‘searing honesty’ sometimes belies the egotism of central character. I think a dramatic brush with death, if you emerge victorious, seems to make self important people even more so. One literary editor who’d had a stroke wrote about the celebrities at his bedside.

Salman Rushdie didn’t visit me on my sofa during the when I was beached there for 5 years.

The accounts of non celebrity sufferers of HD do read more honestly; their stories are heartbreaking, There are people self medicating with drugs , suicides and families torn apart. HD has been called the worst illness and I would concur. It muddles up your personality, ruins your relationships, makes you gradually more and more dependent on others and less and less loveable. It leaves you unable to communicate but takes decades to dispatch you. It starts in mid life, when everyone around you is having their second baby and enjoying the fruits of their labours.

It is a movement disorder that makes you restless and fidgety, progressing to writhing and pitching. And while you’re declining you have plenty of time to reflect on the image of your daughter or son in the early stages of the illness themselves and wrestle with the terrible burden of guilt for this toxic inheritance. What could be worse than that?

Incredibly, sufferers are programmed to find something positive in all this. I can’t decide whether this blog should be an inspirational read for other HD sufferers, a primer for the general reader to raise awareness about the illness; a theoretical meditation about identity and forgetting… I don’t feel qualified for any of these tasks.

Suggestions welcome.

Archie the Cat

Archie is our cat. He is a Maine Coon – one of the largest breeds of domestic cat – with a personality disorder. I blame myself for bringing him up badly. When he was a kitten, I was running a feminist magazine from my kitchen table and he kept getting in the way. When this happened I shouted at him.

‘Archie… get down!’

He never did. He kept knocking Diet Coke all over my colleagues’ keyboards and nipping their ankles. A few months after the demise of this project, one of them wrote a piece for the Huffington Post about Archie and the problem of unprofessionalism in feminist publishing.

A has tried to give Archie therapy but it hasn’t worked. Then she tried to train him by saying ‘sit’ before she gives him her food, but he never does. He has terrorized my poor carer by launching himself at her with bared teeth so he’s banned from the house when she’s here. I’m thinking of getting a dog – my neurologist thought it would improve my quality of life – but Archie is a big bruiser – the staffie of cats and I know who would come off worse.

In spite of this, I have compiled a shortlist of family friendly dogs who tolerate cats on a pre loved pets website. Dr Wild has seen his patient’s lives transformed by this motivational and non judgmental presence in the home. I have spent the past few years marooned on the sofa when I’m physically capable of going out and I know how much people living with HD benefit from regular exercise. When I do go for a walk, I sleep better and my restlessness abates for a few hours at least.

Archie, a formidable Maine Coon who likes nipping at ankles.

How I live now

In the working week my  husband goes to  work. My children are both at school. I am alone in the house when my carer isn’t here. I wander around losing things and ruining my clothes by washing them at the wrong temperature. My unconscious wants me to fail at these tasks so I can justify getting someone else to do them. At a recent care review they decided I had enough support but I lack companionship. I curse when I break the china (HD has made me clumsy) There are only two china bowls left and a couple of chipped cups. Every morning I spill coffee and breakfast all over myself, so I wear the same jumper every day.

We live in a big house in Kentish Town which we bought when Kentish Town was quite down at heel. It is big though, with grand proportions.  At the time I pictured fabulous parties and literary salons with drinks from the 50s cocktail book I bought in a charity shop. French 75s were my favourite; gin and champagne. When I look at the vola taps in the bathroom and the gentleman’s club wallpaper in the hall and the gold overmantle mirror in the sitting room and the wardrobes full of clothes in moth protector bags.

It all seems like a folly.

There are books everywhere, but I can’t read them. It’s not just a lack of concentration but something like aphasia which means I can’t understand the words. This isn’t that common in HD and they thought I’d be pleased to be a special case. I am, but that’s small comfort when I can’t pass the time as I’d like to. Everyone seems to be joining book groups and telling me about them. I did try audible but I couldn’t follow the sense of things. What happens to a writer who can’t read? The evenings are the worst. When my husband is out or working late, I watch The Nightmare Neighbours Next Door. Last night it took me a while to register that it was a repeat. In his nursing home, my dad watched the BBC news channel – which repeats everything –  on a loop with the sound turned up. Someone suggested watching classic films instead. Is that a good idea?

On the wall in the bathroom there are relics from my past. My mother’s Bob Dylan programme in a frame with 1969, the year I was born. My miners’ strike propaganda posters are among my most treasured possessions: A Closed Mind Closes Mines and Give Youth a Future. But I feel ambivalent about nineties me and also strangely competitive. I used to write regularly for The Guardian and there are covers in frames with my byline on.

One of my bylines in the Guardian in the nineties.

There’s a garden office that I insisted on because the hubbub of family life was stopping me from concentrating on my opus. I used this for a few months then came back indoors.

I’m not quite alone. I have Radio 4 and our vicious cat Archie for company. I keep hearing the Archers without ever listening to it. Apart from Rob, I couldn’t tell you the characters’ names. Why don’t I change stations? I like getting annoyed with the plays and comedy programmes. I feel like myself when I’m shouting at them.

Radiohead: I feel like myself when I’m shouting at the radio.