Caring for my Mother and being HSP

Back in the 1970s, when I was doing grad work at Uni, I used to go along to the Psychology Dept and earn myself 5 quid an hour by taking part in their experiments.  That was quite a bit of money in those days (and none of the experiments involved taking drugs).  One time I was asked to sit in a small auditorium facing a film screen, while I was wired up to some measuring devices, which measured my galvanic responses and eye blink rate. They then proceeded to subject me to totally boring stimuli in order (they told me afterwards) to measure how long it would take me to stop reacting.  This was the purpose of the experiment – to get a normal distribution curve for the length of time people can remain focused and alert in the presence of uniform, boring stimuli.
The stimuli were a light shone through a slide projector, with no slide in it, onto the screen, and a beep sound. These were activated at random intervals, sometimes together, usually one after the other, with no pattern to them. Also the room was darkened, just to make sure there was nothing else for me to look at.  Once I had reached a state where I was nearly comatose, they then played some stimulating slides and sounds, and then started the whole thing again. This time it took me a shorter while to get to the point where I wasn’t reacting at all to the light and beep. When it was all over the 2 students who had set up the experiment were oddly annoyed with me. It turned out that this experiment usually only lasted around 30-40 minutes max. I was there for about 2 and a half hours. I was there for so long that someone walked into the room where the experiment was taking place, expecting to find it unused, as it had only been booked for one hour.  Which aroused me so they had to start all over again. They were unhappy about it because they had to pay me for all that time, but my results were useless to them, because they were trying to find a normal distribution pattern, and I was clearly not normal.  When I asked them what this meant, they just shrugged and said it meant I had a highly reactive nature.
If they had been a little more curious, they might have been the ones who did the research that led to discovering, and writing about, Sensory Processing Sensitivity.  Instead, it was Elaine Aron in her book ‘The Highly Sensitive Person’ (1996).
https://en.wikipedia.org/wiki/Sensory_processing_sensitivity

I read this book back in the 90s, when it was quite new out, and found it immediately helped me understand all sorts of things about myself, and to look after myself. In particular it gave me permission to ‘close down’ when I need to, rather than just trying to keep struggling on when things become overwhelming for me.
SPS is a temperamental or personality trait characterized by an increased sensitivity of the central nervous system and a deeper cognitive processing of physical, social and emotional stimuli. It’s more often found in introverts, though apparently it’s not exclusive to them. It’s also associated with, but not synonymous with, high intuition and empathy. Basically, High Sensitives react more strongly to sensory input both from their physical environment, and also from human interactions, so they read body language, tone etc in greater detail (though not necessarily on a conscious level). It’s like we don’t have the same filters as normal people, (I’m using the word ‘normal’ as I can’t think of anything better to call it), hence my continued reaction, in the experiment, to stimuli that most people would have filtered out long before.

One effect of this is that I make a very good carer. My heightened ability to notice things, even subliminally, about my Mother, means that I am much more tuned in to her needs than many would be.  I’ve always tended to look after people for that reason. Apparently this is very common in High Sensitives, and they often end up in multiple caring roles where they take on so much that they burn out.  Which I have also done in the past.

My challenge in my present situation is to take care of myself. My ability to take care of Mother is something I utterly take for granted, but my ability to look after myself is moot, to say the least.  I hope that all the years of slowly piecing together some level of self-understanding – of which Elaine Aron’s book is a key part – mean that I can be aware enough of my own needs in this situation to be able to meet them.
Mainly what I regularly need is to be able to go off and be quiet and alone for periods during the day. This becomes especially necessary when family members come to stay. Whilst being hugely enjoyable to have them there, the constant talk just drains me.  When I think back to my childhood I recall how often I would just go to my room and read a book, or play some solitary game, when I needed a break from all the noise of brothers.  I just knew what I needed back then, but of course, going off on one’s own is regarded as bad manners or strange, so as I grew to adulthood I found this behaviour tended to be overridden by the need to do what others wanted of me, so I learned to ignore my need for quiet.
Actually, all this makes me pretty well suited to what I am doing now.  I’m used to entertaining myself, I’m living a quite solitary life within this household with my Mother.  Most people just wouldn’t be able to do it, and of course there are times when I feel I can’t do it anymore.  But if anyone can, it’s me.

Earlier this year a new Meet-up Group was started in my village for HSPs (Highly Sensitive People). I’m not a group person, but HSPs rarely are, so I felt most people who went to the group would be like that too.  Which I felt would make for an interesting and congenial group and it was just down the road from me. So I started to attend.
It’s pretty good.  I like the facilitator and listening to the others has helped to remind me of the HS aspect of my nature and how I need to look after myself in relation to it.
In the group, there’s been a lot of focus on noise, because some members have noisy workplaces, and one has a HS child who has difficulty at school because schools simply do not have silence or quiet ever these days.  And noise is so intrusive and hard to get away from.

As a result of this I realized there is a big problem I have been trying to ignore and filter out, rather than actually address, and this is the issue of Mother playing loud music all through the day. Or loud TV.  Really, it’s so loud even non HSs struggle.  I have noticed that I no longer seem able to do any creative work, writing, art, SL choreography, during the day, and I had connected it with the over-loud music, which has become so much worse in the last year or so as Mother’s hearing has seemed to deteriorate rapidly.    As soon as the music starts I feel as if the inside of my head fills with glue, like a piece of clockwork that’s had too-thick oil put on it.  I’ve described this in a previous post, but had not really focussed on what a problem it is for me.
After my first meeting I did start to think this through and realize it's an issue
I need to do something about.  Mother agreed to go for a hearing test, and was found to have hearing impairment that was typical for her age, but when we talked through what Mum actually wants to do about it, she said she was quite happy with herself as she is, it’s just other people who find it difficult.  I had misgivings about how fiddly hearing aids are, as I was envisaging myself having to help her with them all the time, which I just don’t fancy. I have enough to do.  So, I decided it was really my problem, not Mother’s, and therefore it was up to me to do whatever I needed about it.

The long and the short of it (HSs love to tell convoluted tales detailing why they arrived at a conclusion) is that I have used a small legacy inherited from an aunt, and bought myself an old camper van, a 1988 VW Transporter, which now sits in the front garden, with an electric cable from the garage, and I go in there with my computer or my book, and I enjoy blessed peace for an hour or so. Not only is it quiet, but I am semi outdoors, even when it’s raining, and that is utter bliss.  So far I have no plans to take it camping, but no doubt I will.  And it’s a useful spare bedroom when lots of family come to stay.
I was going to call her Rose, coz I like that name and she has rose-coloured upholstery inside. But then I found an elephant key ring on the keys I got with it, and was reminded of an old banger of a car we had when I was a kid, called Nellie (as in Nellie the Elephant) . So I decided to call her Nellie Rose.
I’m actually in love.
Poop poop!

Caring for my mother: “Get off your cross, we need the wood.”

I know some of the posts I write about caring for my mother are a little depressing.  I write those things because I know I am not the only person in the world caring for someone and having the same ambivalent mixture of love and depression at their situation. There’s no getting away from it – it’s depressing seeing someone slowly fade away like this, and it’s depressing being tied to them. It’s difficult for anyone to be so dependent on others for their most basic needs, and it’s hard having to be the carer, fitting one’s own life around the routine of someone else’s physical needs in such a way.  And it’s made worse by not having any end-date to the whole process.

I’m lucky that my mother doesn’t take out her own frustrations at her dependency on me – I’ve had that done to me by a disabled partner, who just basically abused me because of the sheer frustration of being disabled. Maybe the fact that Mother has so little energy, and therefore doesn’t really want to do much, makes it all less frustrating for her.  I’m the one who gets frustrated - when I am interrupted in something to go and help Mum to the commode, or have to constantly think about the time, when I’m away from the house.  That heavy sense of feeling trapped when the first thing I have to do on waking in the morning is to go and help Mother to the commode, even before I have a cup of tea. I try not to get ratty with her about that, but sometimes it does slip out.

But I hope that by sharing these things, there may be one or two others who are struggling in the same way, and who will feel less alone and less bad about themselves for their own feelings of desperation at this so-long process of being tied to someone who is waiting to die.

I’m aware, also, that there is a danger in my deep exploration of what my relationship with my mother has been about all my life.  We all have some issues with our parents, and most women have some conflict in their relationships with their mothers, and I am aware that for some who find themselves in this situation, those buried grudges can emerge in violence and ‘elder abuse’.

For myself, it’s good and helpful for me to dig up, root over and sift through all of that – to unbury the old grudges, to see where they come from and name them. Others would say I’m wallowing in the dark side.  But for me, it’s a way of finding the light.

Sometimes I feel it’s a detective story, finding what’s behind the mysterious silences, the not-sayings, the blind spots that point to things in the past that have been handed down the generations like one of those inside-out houses created by Rachel Whiteread, that tease you to find their true, right-side-out shape.  Over the past few weeks my search has led me to some startling revelations, but I’m not ready to write about that here yet.

What I want to say is a response to someone who follows my blog, and who communicated with me by IM that she thought I was playing the martyr in what I wrote.  Her words were “Get off your cross, we need the wood.” A curious expression I’d not heard before. She also pointed out that I was not the only one who had problems.  As I know she does indeed have her own problems, I preferred to wait until I’d found the appropriate response for her.

Because all we can do is try to help each other.
So often we are told to stop feeling sorry for ourselves, or to keep a stiff upper lip, buck up and carry on.  In fact we do have to just carry on, but that doesn’t mean we can’t feel what we feel. We’re told all our lives that we are not allowed our feelings, because it’s upsetting to others. So we numb ourselves, and try to numb or discount others too.  Then when we see someone who is not prepared to do this, we get into competitive victim-playing. “You think you’ve got problems, well what about me?” As if there’s only room for one or two people to have problems, and we all have to prove our right to feel unhappy, or hurt, or traumatized.

And it’s so easy for me, as for many, to get hooked into this. I do feel I have no right to complain when there are others who are so much worse off than me. Part of the issue between me and my mother is a pattern of not being allowed to feel my own feelings, or to have my own perspective on things. Parents often think they own their children’s minds and souls, and deny them the space for their own life.  So also do teachers and others in authority over us.  So it was easy for that reader to upset me to by her remark.

But it’s not about whose problems are the worst.  Even though I am empathic, I still can’t actually feel another’s pain. Only they can feel that. And whatever pain I am feeling is not made any less by denying it, or my right to feel it. If I allow my own feelings, then I also have the capacity to allow another’s feelings too. It’s not that I wallow, I just allow space. And because I can feel comfortable with my own feelings, negative and crap though they may be at times, I can also feel comfortable with a friend who comes to me with her own problems.

This is not an original concept - it’s so general that it even made it into a cartoon movie called Inside Out. In this Sorrow keeps bursting into tears all the time and spoiling things for Joy, but it is she who gets them out of their impasse, when Joy, Fear and Anger just get them into worse problems, because Sorrow is able to just say “I know how you feel,” thereby allowing all the bad feelings to have their place and therefore step back a bit and let a different perspective come in.  I loved that film. So glad that children are being taught this basic piece of wisdom.

So - I repeat – this is the purpose of my blog. Not to wallow in my own misery, but to say to anyone else who’s out there, struggling with the same issues, “I know how you feel, and it’s alright for you to feel these things too.”

We all need to stop crucifying each other, and just carry the wood for as long as it needs to be carried – yes, feeling the pain it gives us – but still carrying it.

Caring for my Mother: It just goes on and on, this.

It just goes on and on, this.

I think of other women I know who looked after their mothers in their homes, for their final years. 

How long did it last?

One friend said 8 years.  Another’s mother lived to be over 100. 

That friend of my mother’s, who lived up the road, hung on for years and years, though her daughter lived next door with her husband, not in with her. But she and her husband were both off like greyhounds from the trap as soon as she died.   Only held there so long by that thin dusty thread of life, which just would not leave.

Whenever Mum used to go and visit her, she came home so depressed - afraid she, too, would linger like that, half blind and barely able to focus on the present, so lost was she in her past.  Now I’m afraid this will, indeed, be what happens to Mum.

And I openly, consciously, long for it to be over. 

Please, Mum, it’s time. Please go now.

Put so baldly, it’s brutal.  But I know I am not a brutal person, so I let it be what it is.

Life is not so easily extinguished.  You don’t just die.  It takes something to make it end.  Mum’s breathing is terrible, she’s tiny and bent and thin, but she’s quite well. She eats like a small child, but still enjoys her food. Her bowels pass. She toddles in a small circle, clumping her walker along the carpet, her complexly twisted spine listing over to the right, so she’d fall if not for my steadying hands on her small, brittle hips. 

Her only way of passing the time is to listen to music or watch her TV programmes.  All turned up so loud the house feels like it’s filled with a dense, syrupy membrane of sound, which I have to push through as I move round, doing my duties, or sitting in the study, at my computer, trying to think anything at all, under the crashing waterfall of music on my head. 

I’m slowly turning into a ghost. It’s I who am slowly dying.  There’s no way of saying that I am leading my own life still, somehow, in this situation.  I’m just waiting.  It’s me that has to try to keep breathing, not Mum.    

It would be alright if this was the first time I’d ever looked after someone, been of service.  If I’d lived a life of my own choosing and flown my own trajectory, and only now chosen to do something for another. To sample a different flavour of life in my mature years, where the intent is simply to be there for another, no longer to strive and achieve for myself.  I know people who’ve come to that in their mature years and found doing something for others to be a life-changing and enhancing experience, calling up qualities in themselves they never knew were there.

But that’s not true for me.

I’ve looked after other people all my life.  Always put my own dreams and ambitions to one side, thinking “I’ll do that one day, when I have the head-space.”  My inner spaces were always full of the clamour of someone else’s needs.

It was a form of cowardice really. 

Believing I had no right to put myself forward as an artist or writer.  All the voices of family and school reverberating inside the cavities of my self-belief, that only other people became writers, or illustrators.  I never could see how I could get from the world of my imagination, where projects would form fully, in Technicolor, into actual corporeal life.  There was a massive reality gap between A and B that I had no idea how to bridge.  If something did find its way into writing, as it did in notebook after notebook, what then? What was the next step?

Back then, my whole life was a kind of waiting – while I got on with jobs, and marriages, and seemed so strong and decisive.  On the outside I walked my own path, even defied ordinariness, while inside I was waiting, just waiting, for my fairy godmother to say “You shall go to the ball.”

It was a moment of epiphany when I decided no-one was going to live my life except me, back when I left the Dreadful Mistake husband.    That was when I realized about this waiting thing that I’d been doing all my life. Waiting to be rescued from my tower.  

Even now I remember dreams I used to have about a trapped ghost or some surreal half-human creature that lived in the attic of my life. I’d be trying to love it and bring it out of the darkness, but the dream would always turn away into some other busyness and I’d forget about the creature – my own lost self.

When I got away from the Dreadful Mistake that was my decision to end that waiting, and rescue myself. 

And I did.

At that time I saw myself as a large rambling house, full of secret rooms.  Locked doors would open out into beautiful, sun-filled, empty rooms, or dark terrifying cellars, or a confusing labyrinth of corridors and rooftops that I would chase along, until every last room and hidden space had been opened, explored and redeemed. Pulled in from a floating, balloon-like separation, to be connected, known and celebrated.  

And I did.

And then, of course, the house changed, and became a new landscape, leading to further journeys.

And each time I’d end up looking after someone, not really doing my own thing, still waiting for my chance.  The same thing over and over, a hard, spiralling learning. 

So, now, here I am, fully facing up to this habitual cowardice of mine.  The way I bind myself to another’s needs, rather than meeting my own.  Living in a dream-world, because it takes a self-belief I am too lazy to cultivate to make the dream a reality. 

And this time I really can’t do what I’ve always, somehow, managed to do in the past – leave.

The last, terrible, parting that brought me here, to my mother’s house, has healed. Plans for the future are based on all that I have learned from my often difficult path through life. Everything is ready, and I know I have the inner resources to create what I am planning.

But I can’t leave.

This time that really isn’t a choice.

I’ve thought of it. Oh yes. Even talked to mother about “Enough is enough” and “It’s time for me to get on with my own life now, Mum.”  But it was simply not possible, for completely practical reasons.

So I stay.

And wait.

And look after someone.

And dream.

Just as I always have done.

I think there is a difference – a big one – in that this time I am conscious in my dream, not just half-numb and ignoring what I’m doing to myself.

And the strings of attachment are not made so much of love or guilt. I am simply living with this woman who gave birth to me, and whose face I wear, but all resemblance ends there.  We’re comfortable with each other, in that day-to-day way, but nothing else.

When I ask myself what I truly feel for this woman, my mother, I have no answer. She’s just there. Always has been.

Maybe when she’s gone I’ll be able to answer that question.    

Caring for my Mother while living half my life in a virtual world

Monday 7^th March

8.30 am

Mum is really bad today.  I just got her up onto the commode, from bed, but she could barely stand.  She landed on the seat of the commode all sideways and I couldn’t reposition her. When she’d finished I had to drag the commode so it was touching the side of the bed and find a way to lift her bodily back onto the bed, without her being able to assist me at all. Then I swivelled her round and hitched her up the bed so her head was on the pillow.  She’s white as a sheet and can’t articulate clearly.  Last night she was weak too, but she said during the day she was strong enough to take 2 walks around the carpet with the carer. 

My brother and his wife are coming tomorrow.

I’m sitting here in bed with my cup of tea, wondering if this is the time for Mum to die.  Somehow I don’t think it is.  But her breathing has been getting fast and shallow over the past few weeks, like it’s hard for her to get any air in.  David said when they’re like that, they can go very suddenly

Then I think, “If she dies now, when will we do the funeral?” We have so many arrangements in place - my retreat next week in Edinburgh, with two other friends, staying in the City and relying on my car to travel out to the movement teacher I’ve known and worked with for 20 years; brother and his wife’s trip to Cairo to stay with their daughter and bring her back to Oxford to do a training course.  Ok – so – we’ll have to leave the funeral for a couple of weeks, which so many people have to do these days. But won’t it be strange to do my retreat, knowing my mother is dead and not buried? 

My mind chatters on, as if I already know she is going to die. 

But she’s rallied around before and probably will this time too. 

My mind chatters on.  “She won’t eat much today. So I don’t need to worry about what I’m going to do with that remaining piece of lamb steak from yesterday.  I’ll just eat it myself and give her something light.”

“She’ll have to stay in bed.  I won’t be able to lift her again.”    

“I’ll have to get plenty of fluids into her.”

“Should I call the doctor? Maybe if she doesn’t get any better by the afternoon. Or maybe tomorrow. I don’t know”

“I probably should have put in a thicker pad after she went to the commode. If she stays in bed all day that would be better than the normal thin one.”

“Should I warn my brothers? Seems a bit premature. She has had these episodes before and nothing came of it.”

Chatter chatter chatter while I play candy crush on my phone to calm my mind.

9.45 am:

I go back into the bedroom.  Mum has turned on her side and is awake.  A better colour.  I ask if I can bring her pills and breakfast. She apologizes for going back to sleep and that she hasn’t done her breathing exercises yet.   I suggest she leave them for today and repeat about the pills and breakfast.  She nods tiredly.  I go and put out the pills in their pots.  Back in the bedroom I raise her up, using the electric thing on the bed and get a flannel to place as a bib on her chest. Hand her cup of water and pills one at a time, as usual.  She takes them all and is definitely a bit brighter.  Her speech is clearer, though she still sounds tired.  She puts her head back and closes her eyes every time she says anything, but still says “Thank you , dear,” for everything I do.  

I say “Do you want a hot-cross bun for breakfast instead of cereal?”  I think it will be easier for her to eat in bed than cereal.  She nods.

I toast the mini hot-cross bun and make tea for her. Half a banana on the plate with the bun, plenty of butter to moisten the bun.

Back in the bedroom I realize she won’t be able to reach her tea on the bedside table – when she’s sitting up, it’s too far back for her.  I have to use the stand that has the bedpans on it.  I move the bedpans and shuffle the stand to the right position with the cup of tea on it. 

I go and get my fruit ready in the kitchen and return to my bedroom. I’m enjoying the silence, but feel it’s unfair on Mum to miss out on her music.  So I find the channel on the TV and turn it up loud.  She always has it loud. 

My head is aching from lifting Mum earlier.  I can feel the pain spreading from my shoulder joints, around the base of my neck and into my jaw.  Lower back too.  I’ll do Alexander technique and lie on top of my inflatable ball later.  I think and play Candy Crush while I finish my tea. 

I go check on Mum and take away her plate. She ate half the bun and the piece of banana.  I lay her back down again. She’s not comfortable sitting in bed, even with the proper electric raiser.  I go for a shower and dress, then remember about Mum’s nebulizer. I go and ask if she wants it. A tired nod. I set it up and start it and go and lie on the living-room floor in Alexander technique position.  I enjoy the freedom of being able to use the space Mum normally occupies, but the sun is shining brightly through the glass wall and I’m too hot.  They say the global temperature actually topped some level it’s not supposed to go above if we are to avert tipping permanently over into global disaster.  I’ve already seen a pink bud on the camellia in the garden.  I lie and look at the ceiling, thinking about the up-coming financial crash they are all predicting in the next year or so.  If Mum dies now, will we be able to sell the house before the crash?  If not – I’ll have to continue to live here till the economy recovers.  If it ever does. But how can I afford to live in a place like this?  I get up and switch off the nebulizer and lay Mum back down.

She says, “I think this is my heart.”

I say, “Have you noticed any funny sensations in your heart recently?”

She shakes her head and says, “I think it’s just ready to give up.” She does an imperceptible nod of agreement with her heart as she says this.

I say, “Well, I’ve noticed you’ve been breathing very fast and shallow these past few days.”

She asks for a bedpan. As I help her onto that I notice she is quite sweaty and hot. I have put on her silk vest, so she has something on – she normally sleeps naked except for knickers. I feel it’s hard for her to be sitting up in bed and eating and stuff with nothing on top, but maybe it’s a bit too warm to wear under the duvet.

I go into the darker, cooler side of the house to resume some stretching exercises. My headache has gone anyway.  I should do some movement in the garden as this makes me feel much better, but I have my movement space booked for my usual Monday afternoon, and hope to get there.  I lie on my large ball and wonder if I can make a start on writing something for the RL project I have with a young guy designing a computer game for his uni course.  But the thought of doing anything remotely creative makes my mind freeze up.  I’m hosting a music event in Second Life tonight, and even that feels too much just now.

I spend the morning in a daze, playing Restoration Project on Facebook. I look in on Mum every now and then, standing in the doorway to see if she’s still breathing.  She is.  The music plays on.

At lunch time I ask if she feels she can eat and she says “Yes, something light.” I make scrambled eggs for her and cook the piece of lamb left over from yesterday for myself.

Mum eats, then uses the bedpan. Her wee is very dark.  Not enough fluids. I ask Mum if she wants the TV in the bedroom. We have an extension lead to be able to do that. She shakes her head tiredly.  I lower the back-rest and help her shuffle up the bed. When she sits up, she slides down the bed and ends up with her feet almost hanging over the end. In hospital it’s worse. They just haul her up and prop up the backrest, and she has no grip on the slippery mattress cover. I’ve visited her in hospital and found her lying with legs buckled up, in the gap between the backrest and the end of the bed.

I eat my own lunch and turn off the music for a bit of silence.

The day is dragging. I had so many things I needed to do.  I need to get a load of food-shopping for my brother and sister-in-law’s visit, but I can’t get my head around it.   I zombie out, continuing to play games on Facebook.  For some reason I’m feeling stressed about the music event on Second Life. I keep telling myself all I have to do is arrive on time, then just sit there while the 2 musicians play, one after the other, each for one hour.  It should actually be less of a problem as Mum will already be in bed. Normally I have to rush off at the end of the event to get her to bed.  I tell myself all the problems I’ve had with people behaving badly at these events have been dealt with, but still my nerves don’t abate.

Finally it’s 3 pm and I go to help Mum have a pee and make a cup of tea for her.  Normally I’d leave that with her, but I have to stay and wait for her to finish it, then help her lie down again after. No worries. I don’t have to be prompt as I’ll be there on my own today, the friend I normally work with is ill after teaching a successful workshop there at the weekend.

I leave Mum and drive to the place. At least I can get a couple of food-things from the Italian supermarket next door.  I pop in and get crisps, pasta and an avocado. Into the dance place and I start to warm up and stretch. I have such a tight knot in my solar plexus it’s like I can’t find the rest of my body.  Every time I come here I do lots of light, open movements with my arms and upper body. It helps me loosen up from all the aches I get with lifting Mum. I put on some music to help, and begin to feel lighter and less achy.

I hear my mobile go. By the time I’ve fished it out of my bag it’s stopped.  A number I don’t recognize. But there’s a text from the friend I usually dance with.  She tells me someone is going to call me about some coats that were left in the building where I am, after the workshop she taught at the weekend.  I call the number but the line’s engaged.  I leave a voice message, then notice there’s a voicemail for me. I listen to that. It is the woman asking about her coats. I go and find them, leave another message to try to arrange to meet her. I go back to dancing, but the stress has built into a knot in my belly and I can no longer focus. I give up and go home, taking the coats.  

Back home, Mum is lying curled on her side, sleeping. She looks so tiny and thin.  I try to work out timing – I need to be online by 7.45. Supper, then all Mum’s washing and such have to be completed. It’s hard to work out. She won’t want supper too early, but I know how slow she can be with eating and all the other stuff.  I leave supper till 6.45, soup and crackers and a little cheese. She eats even more slowly than usual.  I make a quick supper for myself and watch telly.  Time is getting on.  Mum wants the bedpan.  She takes an age to produce a tiny dark trickle.  I fetch her steroid inhaler – and her water and spit pot for her to rinse after.  Next, brush teeth. Now it’s getting really late – I really need to be online. I am hopping with impatience and stress.  I remind Mum it’s Monday and I need to get online.  She doesn’t get it. Even after 6 years of me telling her about Second Life, the idea that I have to be punctual for a commitment “on the computer”, as she puts it, just doesn’t make any sense to her.  I fetch her face-flannel and towel ready for her to wash her face, but she is using her napkin to wipe saliva and toothpaste from around her chin. I hold out the flannel to her, but she doesn’t seem to see it. The light in the room is dim, as she likes it.  She slowly, thoroughly, continues to wipe her face, ignoring the flannel, while my impatience mounts.   In the end I snap at her, “For God’s sake! Take the flannel! I haven’t got all night!” I shove it roughly into her hands and rush off to the study.  I log in and my artist is already there, trying to set up.  It isn’t the one I am expecting – I thought she was the later one.  I rush back to Mum before I get a reply from the musician.  She’s still slowly wiping her face and hands with the wet flannel.   By now the stress of the day has built up so much this becomes my flash-point. “I should have cancelled the event,” I think. Then, “But why cancel for the sake of 10 minutes?” I rush away again, saying “For God’s sake, will you hurry up! I have to be online.”  She looks astonished. I check into SL to see what’s up. Both musicians have arrived and tell me they arranged with each other who would play first.  I don’t know the other guy, but have been told he plays great music.  I have to copy the URL of the radio stream the musician uses into the right box, so I do that, hands shaking with anxiety and rush back to Mum.  Finally, she’s finished and is lying with the towel and flannel piled on her front.  I remove them and settle her for the night.  She has small tables crowded in around her and I can’t get in close to her, but I manage her eye-drops and a perfunctory kiss.  Then I rush round the living-room, turning off lights so they won’t bother her, lying with the door open.  I get up to the study for the beginning of the concert. Audience have already arrived.  I greet everyone and start posting notices in the music groups to inform about the event.  DD is up and playing.  She has a big following – although a good audience in SL is about 25-30 people – not enough to fill even a small pub in Real Life.  But DD comes with a problem.  She has a friend who likes to attend concerts and cause havoc in various ways you can only do in virtual worlds by over-spamming the website we are all logged into and crashing it.  In SL we call those people ‘griefers’.  I have this griefer blocked from the site we are on, and thought I had dealt with the problem, but now she starts sending messages on DD’s group chat, inviting people to come to where she is and listen to DD’s music and have a party.  I don’t bother too much, at first.  The people at my place don’t leave to go to this other person.  But then other people join in the conversation, some thinking it’s fun and others angry at what she’s doing. She always reminds me of a school bully, with her little bunch of cronies who all think she’s clever and funny.   Other people are messaging me to express their annoyance. I just can’t be bothered with all this nonsense. The music is lovely and the musicians really appreciate being given an opportunity to share it. It doesn’t seem to be asking a lot to facilitate an opportunity for a couple of dozen people to sit at their computers in various parts of the planet, and listen to some nice music as a shared experience for a couple of hours.  But apparently the world of SL music is awash with rivalry between venue providers.  One, in particular, has been targeting me for over a year, and I have banned her from my place. She’s yet another trouble-maker and has been extraordinarily unkind to me in the past, calling me a cunt on Facebook, when I first set up my venue.  I just don’t get it, but I don’t want someone like her around me.  So, now it seems I have 2 enemies n SL, one of whom spills over into Facebook.  The fact that I’ve never met these people and don’t even know their real names, makes the hostility no less intense.  I wonder why I bother, but I don’t see why I should let any of this pettiness stop me.  I quietly resolve to speak to my co-worker on this, because I don’t want to continue to book this musician, because of the problems she brings with her. 

The one, tiny particle of relief in this is that Mum is already in bed asleep and won’t be needing anything more from me tonight.  And I don’t think she is going to die - not this week anyway. 

The hour comes up and we change musicians.  My co-worker wants to talk to me at the end about a plan we’ve had for ages, but never done anything about, to set up my music venue at her place.  The idea is that, on the occasions when I can’t get online in time, because of Mum, they can start up without me.  But they still want me to run it.  I’m agreeable, I need more space where I am anyway and that will free some up. But I am weary. I feel spaced-out and overloaded.

My co-worker is a lovely warm-hearted woman, part of a musicians’ collective who all play at my place, and who also dislike the 2 trouble-makers.  When I told her about my difficulties getting online in time she offered to revive that plan.  I’m nodding, wearily, agreeing, but thinking I’ll take my time.  But she’s all action and firmness,

“Let’s get it ready for next Monday, when I’ll be playing,” she says. Oo gosh! How s that going to fit in with me having guests arriving tomorrow?   All of that will take work that will take place in real time, even though it’s a virtual world.  My mind is incapable of concentrating, but it occurs to me that all it will mean is that I’ll spend a lot of time in front of my computer, which I do anyway, even with guests to stay.  Also bro and wife are going away for the weekend, visiting an old friend, so that will give me plenty of time to focus on this. 

I agree, and we come up with a new name for the new place.  We’ve been calling it the Moon and Hare, but I want something less wispy and ethereal than a hare. They are magical wild creatures, but they run away at the slightest sign of danger, and they live completely solitary lives.  I decide on Hare and Raven.  I need my Raven around. Much more worldly–wise and able to out-manoeuvre other Tricksters. They fly but also have their feet on the ground when they need to. Nothing wispy about Raven!

Finally, I get to bed.  When I wake in the night for a pee, my shoulders and back are hurting like hell.  This is from when I lifted Mum in the morning.  She did feel stronger towards the end of the day. I’ll see if I can get her up into her chair tomorrow.

Tuesday.

I’m in so much pain today, but Mum is clearly stronger when I get her out of bed for the commode.  

I am aware of how much I hurt after moving her, though.  I ask her if she wants a bed-bath.  She nods, so I turn on the extra heater and go for my tea. 

Later, while I am bathing Mum, I start to feel really light-headed and my vision develops a blurry area. A migraine. I know this is caused by the wrenching I gave myself lifting Mum the day before.  I realize I need to do something about this.  I decide to call my cranial-sacral practitioner for a treatment.  I finish with Mum and get her up into the living room.  She is stronger today, though each time she has one of these episodes, she rallies round but never gets back to where she was before.  She is taking slow, continuous steps downwards in health. 

I call my practitioner about a treatment, feeling all the stress well up in tears as I begin to speak to her.  She realizes the urgency and goes to a lot of trouble to reschedule another client to fit me in tomorrow.  I’ll leave bro and sis in law to look after Mum. 

I do some exercises and my head clears. I do manage to go and buy food, and meet the woman with the coats.  The shopping takes quite a while, but I manage to carry the bags to and from the car without much difficulty.  Thank god for shopping trolleys.

I spend a lot more time on Facebook – mostly numbing myself playing games.  I log onto my Second Life Facebook account – that is, an account in my SL name.  I find a message from one of the two people I’ve banned from my site on SL.  She’s been furious about me banning her, claiming that in the past she’d helped and supported me.  This is the one who called me a cunt on Facebook for stealing ‘her’ idea of a music venue.  Last time she left a message like this for me on FB she had blocked me so I couldn’t reply.  But I decide I’ll type up a response anyway, just to have it on record, and try to send it.  When I’m done I copy and paste it into her message box and get on with what I was doing.  To my surprise, she replies.  She says “un-ban me and everything will be alright.” This sounds like a threat.  She sounds like a school-yard bully, repeating herself by copying and pasting the same words over and again.  I really don’t need this nonsense.  I feel like I’m talking to a 13-year-old, mainly because the last time I had an argument like this was when I was 13 myself – with all the exaggerated intensity of that kind of half-child, half-adult spat kids that age get into.  A two-year-old tantrum trying to dress itself up in grown-up threats.  I feel tired and try to focus.  I know this person has mental health problems – everyone knows that – but she’s not just crazy, she’s nasty too.   She’s sitting there in her own little world, firing off insults to someone on the other side of the world, with no idea who they are or what their circumstances might be. 

There are so many people on Second Life who are seriously ill, some with terminal diseases, who can’t get out to do things in the real world.  There are people suffering from depression and tragedy in their lives. I’ve had friends who’ve been through bereavement and all sorts in their lives, and have depended on their Second Life friends to comfort them and help them through.  People who have lovely avatars and lovely homes they’ve built for themselves in Second Life, but who in Real Life are highly vulnerable.  But there are also people who believe they are anonymous, that they can hide behind the apparent unreality of a virtual world and do or say whatever they like, with none of the normal social consequences.    This toxic person is one of them. Basically, a troll.  She knows nothing of my personal circumstances.  I don’t feel particularly vulnerable, but I have been really hurt and upset by her in the past – when I thought she was my friend. 

I decide to do something I’d never usually try with someone like this – refer to my Real Life problems.

Me: Well- I have to get back to looking after my mother now- you do know she’s dying don't you? Nice to have so much love and kindness around me while I go through that. 

Troll: Yes yes like Norman Bate's mother.  Inspiration for a new graphic!

The reflexive cruelty of her reply sort of doesn’t shock me.  All I feel is tired, and I know I really should not be putting any energy into this, but a stubborn part of me continues to try and find something that will get through. But I’m not used to associating with people who think this kind of behaviour is normal and I have no idea what to say to bring some sense of reality into the conversation.  She continues to copy and paste the same stuff back to me, so I give up and log off.  

I start cooking food for bro and sis in law and give Mum a light supper.  I prefer that they are arriving in the evening - normally they come in on a morning flight. 

They arrive and I call out to Mum.  We pay the taxi and haul in cases and congregate in the hall/landing.  Mum has not responded and the telly continues to blare away.  I glance round into the living-room as we continue to deal with things. Her eyes are open but she seems not to have heard the kerfuffle.  Michael goes down and stands in front of her, smiling and saying, “Hi! We got here!”

There is a long moment when she does not respond, then she laughs and says,

”Oh, yes! Hello!” Full of smiles now, she holds out her tiny, thin hands and bro has to bend a long way down to kiss her – his beard and belly making him look like a bear. 

Later, when I am undressing Mum for bed, she says “I’d completely forgotten they were coming.  I couldn’t work out who it was standing in front of me.”

Her eyes are getting bad.  I give her the eye-drops. I realize I’ve forgotten to change them on the first of the month.  After settling Mum down, I go and look in the fridge for the new ones.  There aren’t any.  I must have forgotten to order them. So many little details to keep a track of. 

Wednesday.

I go for my treatment for my back.  I’ll be out for about four hours, as there’s an hour’s drive to and from the place.  I enjoy the quiet of the Oxfordshire countryside. I’m probably better driving than sitting at the computer. 

My practitioner tells me I’ve really pulled things out of place, and orders me not to lift Mum for at least 24 hours after her treatment.  She tells me I must just let the others do it, even if they can’t do it as well.  I also have to get a back-support to wear when I’m lifting her in future.  I agree, but am aware I will be the one lifting Mum onto the commode from bed first thing tomorrow morning, only 12 hours later. 

She talks to me about how hard it is for people who are really good at looking after others, ever to leave any time for themselves.  She herself tends to do this, especially when she worked in conjunction with the Health Service.  I know this lecture – I get it all the time.  I like her approach, which is to recognize that I really am better at what I do for Mum, but to just allow that Mum can cope with having something less well done occasionally.  She says something about leaving her to the care of her guardian angel, as a metaphor for her Higher Awareness.  I’m not sure of her point here, but I think of how I got snappy with Mum on Monday evening, and an image comes to me of another power holding Mum in that moment, when I couldn’t.  I find this incredibly comforting and stop feeling so guilty about losing my patience with her. 

Back home. I tell them all that I’ve been ordered not to lift Mum on my own.  Bro is willing to learn how to do this.  Sis in law sensibly stays out of it. She’s nowhere near strong enough to help with this.  I demonstrate to Bro how I support Mum from the pelvis.  There is a surreal moment of giggling when I realize I’ve just grabbed my brother by the arse, but then the two of us get Mum up onto the commode – he providing the support (by grabbing Mum in the arse) while I tend to getting Mum’s pants down.  My older brother will do this himself, as he’s a doctor, but this brother feels modest about seeing his mother’s nakedness.  Mum doesn’t worry about it at all.

Later, at bed-time, I show Bro how I position the wheelchair just so, and where to place myself between it and Mum’s armchair, to get her up.  He says “Well, I can do that, but not all gracefully and dancey like you.”  Funny how, even after nearly 30 years of being a dancer, I still think of myself as a klutz with two left feet, and am always surprised by others’ perception of me as graceful. 

Thursday and Friday.   

I get on with all the work of setting up my venue on Second Life in the new place.  I chat online with my colleague, sometimes in Second Life and sometimes on Facebook.  Suddenly, I find I can’t log into the FB account that is in my Second Life name.  I report this to my colleague.  We have been chatting on the account in my real life name, as I trust her enough with this information about myself.  She understands faster than me – The Troll has reported me to Facebook for not being a real person.  I know other people who’ve had this done to them as retaliation from within Second Life.  I am required to provide proof that I am real to Facebook. Of course, I can’t. I’m real enough, and have a real persona as Dubhna Rhiadra, but no bills or passport or driver’s license in that name.   

For the moment I can’t think fast enough to work out what I can do about this.  I’ll just have to abandon that account in FB, but I already have another one in the same name anyway.  I’ll leave doing anything with it till I’ve had a chance to work out how to avoid having that one closed too.  Apparently FB only does this if someone actually reported to them.  

My colleague and I labour on, but we keep hitting problems.  She finds the site she had provided for me, is now closed to her and we have to look for another one.  We slog on, trying to find the best solution, making a poster to advertise the new place, booking musicians. I know I am going to be away for one of the Mondays, as I will be in Edinburgh, but the plan is to be able to get someone else to stand in as host, which is why we need the new venue.

In the middle of this, an English friend reminds me the US clocks will be changing to Daylight Saving that weekend, which will mean starting everything an hour earlier, for 3 weeks, till European clocks go forward too.  My exhausted brain tries to take this in.  I realize the impossibility of starting at 7 pm rather than 8.  I hate to give up, as it will look as though my Troll has defeated us – even though it’s nothing to do with her.  But there is no choice, and I decide we will have to cancel and wait for 3 weeks to re-open.  I’m exhausted, and so is my friend.   The hours of work and intensity of feeling are all very real, but at least all this has only meant shifting pixels around, not real hunks of matter in the real world, and Second Life people are used to the unpredictability of bookings and venues, as we all try to intersect our real lives with Second Life, so none of the musicians are put out at being cancelled. 

Atheism and Spirituality

I’ve just read a book called “Conceiving God: the cognitive origin and evolution of religion,” by David Lewis-Williams.  I bought it because Philip Pullman had reviewed it as ‘astonishingly original and convincing.’  Most of it isn’t particularly original and quite a lot of the book is pretty boring, but the author has a theory about where religion comes from.  I don’t disagree with what he says, which is that all religions are a belief that there is a world of spirit beings that can affect the physical world, but the belief in them arises from certain brain-states that are universal to the human race, which are then interpreted according to the culture of the people who experience them. 

As I say – I don’t disagree with the arguments he gives against religion or the reality of the gods which religions are based on, and it doesn’t do any harm to point out that Christianity is as blood-soaked and immoral a religion as Maya.   Or that all religions are power-structures, even in egalitarian societies, such as the hunter-gatherers of South Africa.  But reading his description of the brain-states is like reading a description of colour written by someone who is colour-blind.  

I’ve always felt that religion’s main purpose is to kill off genuine spirituality by controlling it and forcing it to conform to a set structure of beliefs which are conveyed to the masses by an elite.  

I see nothing in most organised religions that remotely connects with my own spirituality.  

But what do I mean by spirituality?  If I don’t believe in spirits (as objective ‘somethings’), then why spirituality?

I suppose I can only answer that it’s not a very good word, but the people who use it – as in ‘I’m spiritual rather than religious,’ do seem to have a common understanding of what they’re talking about, even if it’s not about actual spirits. 

It is about ‘brain-states’ – but not the migraine-like hallucinations which Lewis-Williams describes. Or even altered brain-states brought about by ascetic practices or drugs – which I feel do have some valid claim to be spiritual. Those practices are a way of opening into a connection with the unconscious.  Although I’ve never felt any need for drugs, I’ve found meditation and ritual and even pushing the body by fasting and isolation to be useful practices. And movement – always movement and dance.    I have a naturally strong connection with my unconscious and I’m synesthetic too, I’m used to seeing images. If a particularly strong and clear one occurs I don’t think it’s an external reality – I know it’s arising from my inner world. These experiences are more like dreams –with all the power and meaningfulness of dreams.  Even when I hear a quiet voice speaking in my ear, I know it’s my own deepest wisdom, not an angel or God.  

Most of the spiritual practices I do are about harnessing the archetypal images from the dream-world while I am awake and conscious, because they have the power to transform, they are filled with energy, and they connect us in ways that are far beyond any descriptive, linear, analytical thoughts.  They come from the imagination, which is a part of the full spectrum of human experience that the poor colour blind scientist can never really get. 

So, yes – there really is no God out there. No devil or angels or other spirits.  There is our own deep wisdom. The Universe is awesome beyond utterance, but there is no intelligent design, nor any purpose for it all – except the purposes that we create ourselves. And those are the only purposes that matter.

Any religion worth its salt will tell its followers to love their neighbours.  The trouble with religion is they think we’ll only do this because God commands us.

Spiritual people understand that we must love our neighbours because it is as necessary to the life of the soul as food and water are to the life of the body. We don’t need to be commanded to do this. It wells up naturally from the moment of spiritual connection.  It is the only way we can be truly human. 

I know many people who practice paganism. I do myself actually.  But so many of them are just as into power as any established religion.  Not only do they have their hierarchies, but they all seem to want to do magic, which is an attempt to control the Universe into giving them what they want.  Power and control.

But we are not abandoned children in this Universe, needing a parent-god to tell us it’s all alright.  We are fully-grown adults who are required to live responsibly, take our own authority and look after the world we live in.  Spiritual practice helps with this because it enables one to have a fuller vision of where we are and what we are doing. It creates a sense of connectedness and well-being that continues long after the meditation or ritual – or even the drug – has worn off.  And this energizes us to create hope, beauty, care-full-ness and connection in our daily lives.  

Caring for my Mother: an 8 year review

I’ve been living with Mum for almost 8 years now.  I feel a need to look back over the 8 years and see where I’ve come on my journey.

When I arrived here, I was only intending to stay for as long as it took to sell my house in Wales and decide where I would go from there.  I even considered moving to Canada.  My life was a wreck and I just needed somewhere to stay till I found my direction.  Even when I decided to stay as long as it took to look after Mum till she died, I didn’t really think this was going to be such a long phase of my life. 

It seems hard to believe my attitude back then, that Mum was not long for this world. She was still quite mobile, driving, able to do her own shopping and cooking, not needing any personal care. She was anxious and depressed with being on her own, but a healthy, mobile woman compared to what she is now.  But in my mind, I was thinking 3-4 years.  I think I was picking up on what Mum herself was feeling, that all she was doing was waiting to die.

I’ve written about my mother’s physical progression – from being able to do everything for herself, so that I could go away for days at a time without worrying about her, to her present state of frailty, where she is dependent on me or the carers to bathe, dress, toilet, cook and fetch and carry for her.  But I haven’t said much in my blog about my own process through the whole experience.  When I decided to stay, rather than let Mum go into a care home, I realized I would feel quite stuck and unable to continue with my own life, so I decided my gain from it would be examining my relationship with her throughout my life to the present.  I might be stuck physically, but I would still be on my inner journey.  I would take the opportunity to allow myself to feel, to remember, to connect, with whatever I needed.  I suspected this could be painful, but the fact that, in some ways I’ve stepped outside the world, allows me to let painful things be there, without my needing to stay too normal while it’s going on.  I’ve already been through one major midlife crisis, in my 40s, when I had a near breakdown, and was unable to continue to work.  But that was the most important experience of my life, a massive period of growth and coming into myself. It was painful, but I wouldn’t have missed it for the world.  I wanted to resume that process, to get back to growing and becoming after a long period of feeling dead inside, suspended, somehow, in a waiting place, in the relationship I’d left to come to Mum.  

But where to start?  I’ve never had one of those pally, best-friends kind of relationships with Mum.  We’ve never had much in common. We look quite alike, but the resemblance ends there.  I suppose I’ve inherited much of my personality from Dad, but as he basically ignored us or withered us with contempt while he was alive, I never saw that in a positive light.  The most I could say is that I have many of his characteristics – especially being an introvert – but I have chosen to do different things with those attributes. 

With Mum, I can’t even say that much.  She’s simple, where I am complex; intelligent, but not really a thinker; she’s tried her hand at poetry and writing, but is not really imaginative; she used to like making things, and has created some beautiful textile art, but she is not really creative, while imagination and creativity are my breath and bones; her unquestioning naiveté and acceptance of authority informs her right-wing politics, whereas I’ve always thought things through for myself, even as a child, and formed my own opinions, and been instinctively left-wing long before I knew what it meant.  She can be fine in her own company, but is basically an extrovert and so needs company, while I am fine in company but am deeply introverted and need lots of time on my own.  I’ve always been reflective, a remeberer, and as a child my tendency to think about things and then ask strange thoughtful questions always disconcerted Mum.  Her inability to understand me and tendency to do the ‘adult’ put-down if I said something odd, led to a disconnection between us that I still feel deeply.  A young child needs to be mirrored back in some way by their parents in order to have a sense of identity and belonging.  I grew up simultaneously feeling older and wiser than my mother, because I seemed to be able to see and understand things that she couldn’t; and yet also ungrounded and a little mad because the world I lived in seemed so different from that of most of the people around me.  I was like that child in the film who could see dead people. 

Mum has actually confirmed, on her own initiative, that as a child I seemed to have an emotional maturity that stood out, and I played complex imaginative games that fascinated other children. 

So I came to live here with a woman who I've known all my life, but for whom I feel a strange lack of emotional connection.  But there must be something there – surely as a child I didn't feel that way?  I have memories of walking, holding Mum's hand, as we went places – just the 2 of us – feeling the sensation of  the skin of her hand in mine.   She used to take me to places she wanted to go, visiting friends, the library, shopping, even leafleting an estate with notices about their amateur dramatic company.  I'd always be in my own private day-dream, noticing and reflecting on things, but usually quiet.  I was never one of those chatty children, always asking questions.  That's why she always took me with her, I was always quiet and well-behaved. 

I remember a phase when I was in my 30s, when Mum and Dad would come to stay, and Mum and I would go for long walks and talk about stuff.  This was at a time when I was about as conventional as I've ever managed to be, married to a man I still refer to as The Dreadful Mistake, so I suppose Mum and I had a little more in common.  At the time I felt I had more connection with her than I'd ever had as a child.  She was going through her own issues with life, and would tell me a little about Dad's depression after he'd been made redundant.  She became a little more reflective after doing Marriage Guidance training.  I found out a lot about her childhood during that period, especially the fact that her mother had basically had nothing to do with her and her twin sister for months after they were born, retreating to her bed with what sounds like post-natal depression.  I also learned something of my father's childhood, which he never spoke of (apart from the story about how he refused to write a word for his Latin O level in protest at being made to learn Latin instead of chemistry.)  I certainly learned at some point that he had a very conflicted relationship with his own mother – having been a Mummy's boy – which confirmed my own observations as a teenager that he was a misogynist who hated and feared women.  

But even at this point in my life, when I was probably closer to my mother than I'd ever been, I still felt I'd had more experience of life than she had, having been widowed, brought up two lots of step-children (well - more cohabited with, rather than brought up), suffered a life-changing failure of career when I abandoned my postgraduate studies and then endured years of bullying in the low-grade job I managed to get, because I had too much education.  All this was quite outside anything my mother could imagine.  I'd already lived more life and suffered more pain in my 30s than Mum ever did – though who knows how much a person is suffering under the surface of their uneventful lives.  Mother certainly spent nearly 60 years married to a man who never showed her any respect.  I don't know how she endured it, but I have learned that in fact she did try to get away, but he clung to her and manipulated her into staying.  So I know where I got my tendency to get sucked into relationships with needy people, and to just endure endless amounts of shit from partners.  But I always did eventually break away, and Mum never did.  I think having a husband die when I was so young knocked out that assumption that you are stuck for life and couldn't exist without a partner. 

So- I brought all of this into my quest to explore my relationship with my mother.  All this back-story of disconnection which inspired my poem The Separation of Difference:

 THE SEPARATION OF DIFFERENCE

We are constantly being born.

That first wrenching parturition

Constantly repeated.

To blend is bliss

But to separate is to become.

This mother’s womb does not devour,

Suffocate,

But still, it clings,

Reaches out to a hand long gone,

Though still-present.

That never knew oneness, sameness,

Only ever the separation of difference.

And I cannot go with you,

Small hand in yours,

On this last journey,

Alone.

I’ve never have that feeling that I've come full circle, that Mum nurtured and cared for me as a baby and now I'm doing the same for her.  I do have body-memories of being dressed and even bathed, as a small child, but I never have any sense of repaying Mum for what she did for me.  Being the 3^rd of 4 children, I mainly remember being pulled around impatiently by a mother who was always struggling to keep on top of everything, and usually watching one of my brothers, rather than me.  When I dress or wash her I see her body stiffen and stop breathing, and, for a moment, she looks like someone very young, a baby.  I think she was pulled and prodded around by impatient, rough hands when she was tiny. 

Indeed, I feel like I have always somehow looked after Mum.  I think I was always the old soul, too aware of her struggles when I was very young.  To some extent we all were aware of her vulnerability, as children, and that's the reason all 4 of us are so protective of her now.  We all have different connections with her, but none of us wanted her to go into a care home.  I sometimes try to imagine what it would have been like if she'd died first and Dad was the one who needed looking after.  I know I wouldn't have been able to do all this for him.  Just as well he died so quickly and suddenly. He couldn’t have coped with disability the way Mum does.  

I've found things out during this long conversation that has been our life together over the past 8 years.  Some of the things she's told me about family history and her relationship with Dad have turned my assumptions around.  I don’t dump my opinions about Dad on her, I'm careful not to lead her in any way. But it is true that some of the questions I've asked her have resulted in her thinking about things in a different way.  I see a long process of reflection and re-evaluating taking place in her – occasionally she shares the odd tip of that iceberg.  

So, even as she is fading out from this world, she is becoming clearer as a person.  She always seemed like someone who had never come fully into herself, somehow only partly there as a person, because she lived so long in the shadow of my father.  I still wonder how much more of a person she'd have become if she'd succeeded in getting away, during that long, awful 10 years of our childhood, when the 2 of them were permanently on the brink of splitting up.  I

I do respect all that Mum did to find some fulfilment and direction in life.  Her voluntary work in a Barnardo's home for teenage girls, her Marriage Guidance Counselling (though I do find that a bit incredible), her singing and friendships. It's become a shared story in our family that Mum took the lead in everything and Dad tagged along after her - into Marriage Guidance, into singing, writing – all things which Mum initiated, then got Dad got into and took over and dominated.  It seems to me that the friendships they had were all created and sustained by Mum. 

But on a really deep level, I have to acknowledge that I still find it hard to respect my mother.  I can say all of the above, and it's all true.  I can acknowledge that she did the best she could, that she's a different generation, and made different choices.  I can salute her strength in endurance, and I see that she was looking for meaning and self-worth (which she never bolstered up at anyone else's expense - unlike Dad). But I don’t really feel that.  Is it that the decades of my father's contempt for her have rubbed off on me?  How does it affect someone always to be subject to that? It can become self-fulfilling.  But I suspect it goes deeper.  Even deeper than the disappointment of not having the mother that I really needed, because she is too different from me to be able to be there for me in fundamental ways.  I think my own deeply empathic, insightful nature always enabled me to know, even inchoately as a child, that inside she was a virtually abandoned baby, born a weak 2^nd twin that no-one knew was there till she began to come out, too weak to hold herself up till she was nearly a year old, undoubtedly left to herself for long periods by a mother who was depressed, angry, waspishly bad-tempered and who blatantly favoured one child over the others.  To me, that child, my mother, that abandoned baby, who is still waiting for someone to SEE her, is still present in the woman who is slowly wending her way to her grave.  And it resonates with the child that I was, the unacknowledged inheritance that I have been handed, as the only daughter.  I hold this so deeply that by the age of 7 I knew that I could never become a mother myself, never hand such a poisoned gift to another generation. 

LLEU LLAW GYFFES/ INNER MOTHER

I am the child of a woman

Whose mother turned her to stone

In her own womb.

That un-gift thuds on

Through my veins.

A skein of need

Looking for a final resting-place.

Children can be lost in time, you know,

And their ghosts inhabit others’ bodies.

I became lost Lleu,

Wounded, I could not fly,

Only cast heart-flesh and maggots

To feed creatures from the Underworld,

Wise creatures who led me back,

And called me three times by name.

Rescued, I rescue the princess.

She is faded, blind.

She has been sleeping too long,

Flying in the dark.

I take her hand

And lay her to rest on my own breast.

She is my mother, my child.

So, these are my explorations – the hard questions that only mean something to me.  What am I carrying in the grain of my psyche and my body from my mother’s shadow-self?  All women have some kind of issues with their mothers, and I suppose men must have similar issues with their fathers, that are to do with our sense of identity.  For each of us the journey of discovery is unique.  The constellation of genes and personal history that creates the cocktail of a family, shaken and stirred together at a time when our soft brains are still growing into a shape that fits the world, is what we take with us when we separate out to find our own lives and loves and make our own families.  Somehow it’s always been my lot to feel alone in this world, an orphan without even the luxury of being able to fantasize wonderful parents, because I could see them in myself, in face and colouring and personality.  They weren’t strangers to me, but I was to them.  When I first heard of reincarnation my fantasy was that in a previous life I had been, not the parent, but the grandparent of the two children who brought me up.

So, when I bathe my mother, dress her, help her stand and walk, I have no sense that I’m doing for her what she did for me 64 years ago.  I feel I am doing what I’ve always done – looking after her. The continuity feels linear, not circular.

Another way I’ve explored is to try and notice my reactions when some habitual thing Mum does really pushes my buttons.  I feel this will tell me when things go really deep.  For example, I feel my body tense and my temper rise every time Mother waits for me to start doing one thing for her and then asks me to do the other thing.  There is a theme that comes up in folk-tales around the world – the Impossible Task - and I always feel this theme is my story.  No matter how hard I work or how well or how swiftly and effectively I do my task, it will never be enough.  The only response will be to set another task. And I will be watched for the slightest failure, the smallest stumble will be laughed at, the tiniest blemish pointed out.  My body-reaction tells me this goes way back.  And again, I recognize that Mum did things that way with me, when she was teaching me basic household tasks, because that was how she was taught.  Her generation taught by criticism and fault-finding, but Mum’s family really went in for ‘teasing’, as they called it.  It was actually painful, belittling mockery for the tiniest deviation.  Mum herself never teased us like that – she didn’t like it when it was done to her, so didn’t do it to us.  Good for her!  But it’s still there in her.  Even when you try to erase bad family ways when you bring up your own children, the scraped-away palimpsest of it continues to impress itself on your behaviour.

So – in all my explorations over the past 8 years, I’ve been to some pretty dark places.  I’ve lived my sense of abandonment by a mother who struggled to cope with 4 children, all so close in age, when she was little more than a child herself, and a selfish and immature husband.  I’ve recognized myself - with shock – when I read a book about the effects of emotionally absent mothers.  It’s not that I lack compassion for Mum, but I allow myself to have my own feelings, when these truths come home to me.  The lack of protection for us as children, has to be acknowledged, even though I recognize it came from blindness and naiveté, and not lack of love.  My task has been to look as long and as hard at the dark side of my relationship with my parents as I need, and the doing of it has in some ways allowed me to feel more respect for Mum and her struggles, more appreciation of what she was, rather than disappointment for what she was not.  If I allow that my feelings about all this are my own business, (as long as I don’t act out on them towards Mum), then I can go as dark as I feel is appropriate, without needing to make excuses either for myself or Mother.  It is what it is.

But I do desperately long for this to be over, so I can get back to my own life.  I tell myself I am doing a full-time job and like any other job it takes up a large part of my day, and that if I added up the number of hours per day I actually work, it’s not very much.  But it’s hard to be at someone’s beck and call day in, day out, with no clear boundaries around when I’m on duty or not.  I tell myself I’m being an old bat when I feel resentful at being asked to do something for Mum when in my own mind I was just going off duty, even though Mum asks sweetly and always says thank you – but a woman is used to being her own boss in her own house, it’s not like being at work, and I just have to remind myself that my irritation is natural. 

I reached a point of total rebellion last year, when I decided enough was enough and suggested Mum could go and live with my brother in Scotland.  It turned out this was not possible, so I’ve settled back in to waiting it out, with extra support from the Scots brother – the only one who lives in the UK -    and more carer sessions.  In retrospect, I realize much of that reaction was brought on by the high number of visits by so many family members, which became burdensome and created all sorts of boundary issues between me and my sisters-in-law.  I look at last year’s diary and see visit after visit, week after week. Nephews and nieces are no problem and it’s always lovely to see them.  But there is a confusion about roles when I go away for a break, leaving a brother and his wife to look after Mum and run the house.  When I return things can get a bit bumpy as we change tracks back to me being the alpha female in my own home, and them being guests. It’s a learning process for all of us.  I’ve never spent this much time with my family, and in the past I was more likely to visit with them than vice versa.  We’ve had to get to know each other all over again, because of this different context of our interactions. 

So this has brought up old issues with family as a whole, not just parents. Spending so much time with my brothers has brought up painful memories of miserable school holidays as a teenager, coming home from an all-female boarding school, to a male-dominated home where I felt like a stranger.  My parents moved to a different part of the country when I was about 15, and I never got to know anyone or have any friends there.  It was not my home, and I felt more kinship with my school friends (in spite of the ghastliness of the school) who became the sisters I longed for. 

But this, too, has brought its own blessings.  There’s always been a disparity between the way my family sees me and the way the rest of the world does, even back in the days of school, and I realize that is still there, after all these decades.   As a teenager I was acutely aware of how male-dominated my home was, and how misogynistic my father was – but I had to accept that as normal back then.  It meant that my mother and I were automatically marginalized by all the men.  The sense of male entitlement meant that we simply weren’t acknowledged, and this affected even the brother that I was closest to.  We’re all pretty strong characters, but my strength has largely been invisible at home.  Outside the family, I’ve usually tended to assume some kind of leadership role, That would just happen even when I didn't look for it. .  Now I am in a situation where I expect my status as woman of the house to be accepted without question, as any woman would do in her own home, and I find myself needing to spell it out to siblings who seem not even to be aware they are marginalizing me afresh.  This has forced me to examine my own attitudes to myself, and I have begun to own my own leadership qualities.  I am an energy-holder, not a dominator, a collaborator and creator, not a dictator, I lead from behind, and am never threatened by another’s talent or strength.  I gravitate to people who work like that themselves.  But I can’t bear controllers or manipulators. 

My dream for my future is the creation of a mini-community of women like me, who are alone in their 60s, lacking good pensions and needing to live rent- and mortgage-free, in order to support themselves into old age.  I need to own that I am the woman to make this happen and keep it working.  Without my particular style of leadership and ability to collaborate, it will never happen.  It may still never happen, as it all relies on having enough money.  But it’s an important dream. It’s the reason I’m still hanging in here. 

After the darkness and the rebellion, I am now in a stage of acceptance.  I never imagined Mum – or anyone – could continue to live in such a frail, immobile state.  I just have never experienced old age in this way.  I keep expecting this to be her last winter, but then she lives on and grows frailer, and it’s another winter, and she still hasn’t gone. 

And why shouldn’t she hang on?   She seems to have so little now, just sitting there all day, listening to music, watching telly, sometimes listening to an audiobook.  She rarely sees any of her friends, though she phones them.  But she has one important thing she never had in all those years of contempt from parents and husband – love and respect.  Her carers dote on her, her children and grandchildren go out of their way to visit her and let her know how important she is to them.  She’s enjoying a period in a gentle, golden light.  She is reaping what she has sowed, because, in spite of her failings, she always gave us one important thing – she was always glad she’d had us, glad to be a mother and give us life, seeing us as her great achievement in life.  She, whose own life was so begrudged by her own mother, never grudged us ours. 

And my brothers?  Well- we talk, we share our reflections and discoveries about our parents, and memories of our childhoods. We’re learning as we go along.  In future we’ll grow more distant as we resume our own lives after this joint project is over.  But we’ll all have learned much about ourselves and our family and been changed by this experience, and that has to be a good thing.