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.   

Caring for my Mother: candida skin infections

I have the idea that this blog should be useful to others in similar circumstances. It would be useful if there was a forum where I could post my musings, but when I look for these things none of them seem to be directed at what I am doing. Be that as it may, I'd like to offer something about a minor medical problem that can affect elderly, immobile people with compromised immune systems.

My mother has some difficulty in washing her hands thoroughly because they are so weak and inflexible, and they are kind of permanently cupped because of her arthritis. Since she became unable to have a shower, she has had to rely on flannel washing of face and hands twice a day, and complete bed-baths twice a week. I kind of did notice that when using the flannel, she doesn’t really get into the pit of her palms or between her fingers, but she also uses hand sanitizer every time she has used the commode, so I had no serious concerns about hygiene. Just after Christmas I did notice there was a pale red patch in the centre of her palms, but it didn’t mean anything to me. Then her right hand swelled up all through the knuckles and became very painful. Her left hand was hurting too, both looking red and inflamed on the backs of the hands and around the knuckles. She called the doctor and described her symptoms, not mentioning anything about a tiny pale pink patch in the palms of each hand - why would she? The doctor said it sounded like a flare-up of her arthritis and prescribed Ibuprofen gel. I wasn't too happy about her using ibuprofen, but complied by applying it all over her knuckles and between her fingers, where she was feeling the pain. Then we noticed that the webs of her fingers had become very red. I was concerned that the ibuprofen gel was causing bruising, as she is on warfarin and it's not recommended for anyone on blood thinners. But she was getting relief from serious pain in her hands by using it, so I carried on with her wishes, by continuing to use it a couple of times a day. The gel was creating a seal on her skin, preventing any air getting to it. The redness got worse and her knuckles continued to be excruciating. Then I noticed a white crusty, damp growth had appeared in the pit of her palms and between her fingers. It looked like a skin infection to me. By then my brother and his wife had come to care for Mother while I took part in a dance show, and bro – being a doctor – confirmed that it looked like an infection. She had an appointment anyway at the local GP's, for a different reason, and my brother asked them to look at her hands. Right away it was diagnosed as some kind of yeast/fungus infection, probably candida, and they took swabs, prescribed a cream and suggested she stop using the ibuprofen gel. She is now using a prescription hand-wash as well as the cream, and slowly the rash is clearing up. Two weeks ago it was terribly painful for her to have the cream applied, but the soreness has abated and now the skin is just rough and dry and broken-looking. I have also now introduced a proper hand-washing session a couple of times a day, where I bring a small basin of warm water for Mum to get her hands right in and really wash in between fingers and into the pit of her palms. While she is using the prescription hand-wash I am using plain warm water, but have also used Citricidal mixed in, or Epsom salts. Citricidal is made from an extract of grapefruit seed, and is used for its anti-fungal and anti-yeast effects. http://www.diagnose-me.com/treatment/grapefruit-seed-extract.html

Epsom salts are just great for aches and pains and also have antiseptic properties. Once the prescription hand-wash is finished I will use the Citricidal.

I have also sent off for a very good product called 'keffir' supplied by the Chuckling Goat, which is a live culture in goat milk, which boosts the immune system and is effective against a wide range of conditions from IBS to skin infections and auto-immune problems. This will take some time to arrive, as they have to wait for the goats to produce their milk and then for the culture to do its thing. I've sent off for a soap and a hand cream by them, as well as the stuff you drink. I will report back on how well that helps when I've had time to try it.

https://www.chucklinggoat.co.uk/

I hope this is helpful 

On Anger. a letter to my niece

My dear niece.

I was touched by your post a few weeks back where you felt guilty about feeling angry because someone had frightened and upset you. I wanted to share some of what I have learned about anger over the years of my life.

All your feelings are there for a reason.  They are your response to something that is going on in your environment.  Their purpose is to help you evaluate what’s going on around you.  They are as morally neutral as digestion. It’s not what you feel but what you do with your feelings that matters.

Anger’s purpose is to tell you when something is not right and to give you the impetus to act on that.  It is both information and motivation.  In Chinese medicine, anger is associated with the liver.  The liver is the organ that converts sugar into fat, to store energy, and then converts it back to sugar when energy is needed. (This is a simplistic version but basically correct). It is thus the organ of taking action in the world.  It is associated with the wood element and with tiger energy. 

Just think about this: - wood comes from trees.  Think how trees stand upright and grow against gravity. Think of their fibrous strength, that still stands whatever winds come and buffet them.  Anger is what enables you to stand for yourself, your truth, your needs, your right to be your own person.  Trees grow in forests, surrounded by others who also have their needs and rights to light and life.  Each tree has to find its own way – which they do. They each stand, and in their standing they create a whole ecosphere where each has greater being because of the standing of the others. In an unhealthy environment, trees compete with each other for scarce resources.  But it is our human, Western, over-individualistic perspective that sees the needs of one as always pitted against the needs of others. Trees don’t see it this way.  They share nutrients through their roots and the symbiotic fungi that live in the soil.   

And tigers are the embodiment of the ability to take action. They are bright and fierce with life, hungry and passionate for it, willing to be brave and fierce to meet their needs.  Think of a mother tiger defending her young. Think of the wonderful poem “Tyger, tyger burning bright, in the forests of the night.”  However dark the forest, they burn bright.  

But if you cut down the trees, and forbid them to stand, then there is no defence for the land against the flooding waters of emotion. They will rush in and cover everything and the earth will come landsliding down and everything will be out of control.  The trees, by their standing for themselves, keep the ground in place. As women we are taught from an early age to block our anger, to smile, to smooth things over and stay calm. These are useful skills and we all need to learn this, but when it means you feel guilty about ever feeling angry, no matter what the cause, then it’s unhealthy.  Swallowing anger fills the belly with toxic emotion, creating digestive problems, breathing problems (from not being able to speak), and unassuageable hunger from unmet needs (resulting in addictions, eating disorders, you name it.)    We’ve all heard of unrequited love - well I have a phrase I’ve often felt a need for – unrequited anger.  For all those times when I have not been permitted to speak out for myself. Or when I have spoken and my anger has been abnormalised, and unheard.

And that is the problem with anger. In itself it’s a perfectly healthy and indeed sensible thing to have around, but when you speak out in anger, people generally don’t want to hear you. It doesn’t matter how valid your point of view is, if it’s said angrily people just tell you you’re wrong.  I often find myself on the horns of the dilemma that if I speak my piece reasonably and calmly, then people think I’m not serious. But if I speak it angrily, they get that I’m serious and there really is a problem, but they invalidate me anyway just because I got angry.  It doesn’t help that I’ve been so conditioned and punished for ever getting angry that it takes a huge amount of awfulness in my life to make me speak out. So when I do, it comes out as an explosion, and I always get tearful and can barely articulate – which makes it soooo easy for anyone who just doesn’t want to listen.  Anger begets anger. But the other guy will always justify their anger by saying you started it. 

So - even though it’s true that anger is ok to feel, there are no easy answers to how you should express your anger in a productive way.  All I can say is, use your anger to give yourself the courage to speak out and stand for yourself.  But don’t expect others to like you for doing so.  When you resort to anger, do so in the acceptance that you may make others angry back with you.  And, however much you may want to, it’s not always possible to retain your sense of self and be polite and nice while you are angry. It’s more than likely you will say things and hear things back that you didn’t want to.  In my life I do try to save anger - or rather my expression of anger – for when it’s really needed.  And even when the fallout from it can be bad, and people get upset, I’ve reached the point where I can truly say that mostly it does achieve a good change in whatever situation I needed to deal with.

But even when that happens, no-one ever acknowledges that I had a point. Even when people do change their behaviour and it’s a change that benefits all – they still never thank me for it. That’s just the way it goes. Lots of times I just have to say to myself – “Just because people didn’t like hearing what I had to say, doesn’t mean it shouldn’t have been said.”

No-one likes to hear unwelcome truths, even when everyone benefits from the speaking of them.

And lots of times it isn’t right to say anything. Then I just note my anger and let it be. I never stop myself from feeling what I need to feel.

No-one should ever tell you what to feel.  

Caring for my Mother: Gypsies versus Tourists

I've always felt that from way back we had Romany blood in our family, from somewhere on my father's side.  I have no proof of this, and it probably isn’t true in the ethnic sense.  But this is about the inner gypsy, which is something we have in our genes from the First Ancestors who left Africa to find better eating somewhere new.

Anyway – I happened to drop this into a conversation with my mother, and she was astonished that I would feel any affinity for gypsies. 

She said “But you're the only family member who’s not interested in travelling!” 

A valid point that set me to thinking. 

I can't see that the mere wish to travel has anything to do with being a gypsy – even though they refer to themselves as travellers. (Note: this has nothing to do with romanticizing or analysing the traveller/Roma life, which is a thing in itself and none of my business.)

A gypsy is someone who leaves where they are and moves on to another place to live. Just as our first ancestors moved on when the place they were in could no longer support them, a group would hive off and move to new hunting grounds along the endless sea-shore between Africa and the rest of the world.  It's about taking everything you have and making a home in a new place. 

It's not about going somewhere just to look at it then going back home.  Which is what tourism is.  Tourists are not uprooting and setting off into the unknown to find a new home.  They are just on holiday.  They already have their homes.  They want to see something new without losing what they already have. 

And I'm not dissing that.   It helps us to see ourselves as one world, all connected - to go and see something of how other people live.  Lots of people make their living from the urge that people have to do that.

It's just not something I feel an urge to do myself. 

There are places I'd like to see, and connect with. I went to Crete once to see the ruins of that ancient civilization and felt so touched by the landscape of olive groves and pinkish soil in the interior – I felt I was stepping back into the Bible and the life of Christ. (And then I discovered that this was the home of Nikos Kazentzakis- who wrote the only life of Christ I've ever felt a connection with) 

I'd love to go to a part of France where they have cave paintings.

But I just don't feel any need to travel all over the world just to stare at people who look and live differently to myself. I do travel – but mostly to see family and friends. Once I even went all the way to Seattle to meet a friend I'd met on Second Life, for an hour in a cafe

But I have always been willing to move away from a situation that is no longer nurturing to me.  To up stakes and find a new place to make a home.  I don't like to own too much, because I need to know I can take all my possessions with me. 

But this doesn't mean I don't do commitment.  Far from it.  I know myself to be bigger on commitment than most – in relationships, friendships, community.   It's just that, for me, the commitment is all the greater because it's not just a kind of laziness, or stagnation, or because I'm too afraid to let go of what I have, too afraid to be alone.  Commitment means – to me – that each moment of each day I have actively chosen to be there, with that partner, that friend, because that is what I freely wish to do, not because it's just too much faff to break up, or move on.    My loves are never just habits.  And there's nothing I hate more than being taken for granted. 

Hmmm. This all sounds a bit arrogant, and selfish, but I know I am not arrogant, selfish nor - as I say – unable to make commitments.  But I do believe that in order to live with integrity, to be authentic and fully present, to grow and become whatever we have in us to be, one has to be prepared to lose everything, and to be the bad guy in the losing of it, if it becomes necessary to leave a partner who is preventing growth and connection.  I just hope that by the time I get to the end of my life I have lived up to those ideals enough to justify the pain. 

It's ironic that the only reason I am available to live with my mother as her carer is because of this.  I moved on from a relationship and a community that were no longer nurturing nor even healthy for me, and found myself living with my mother at a time when she really was not coping at all well on her own.  And however much I try to make the best of it, I long to be free to get on with my own life.  But this is not like relationships, jobs, communities, that I can break away from, this really is a commitment for life.  Not my life, but Mother's. I can't just move on – not yet.  

And it has provided me with a breathing space. A time to collect myself from wherever the real me went in the situation I was in before.  It’s provided me with an opportunity to recover financially, with respite from the constant anxiety of never having enough to live on.  It's actually very comfortable and easy in some ways to be here. 

But then - comfort and ease have never been top priorities in my life (pleasant though they are).  I tell myself that this, too, is part of my growth, my learning and becoming, that I am reclaiming parts of my past, exploring what's really there in my relationship with my mother. 

All true, but what I am really doing is just what I've always done – living in someone else’s house and looking after them.   Story of my life.  But I guess that is what the learning and becoming is really about – my tendency always to end up looking after someone, and never even really, fully being allowed to feel their home is mine too.  For all my tendency to move on I am a triple Cancerian which means I have one massive, incurable mother-hen complex – albeit a hen that carries her home with her wherever she goes.

And I really do have to face up to that. 

My future life will be in a house where I can shut the door behind me and there is only me to think of.  I can wake in the morning and breathe, knowing I can make my own plans for the day without having to factor in anyone else's needs.  Where guests really are guests, and behave as such, rather than taking over in the name of 'helping' me.  There will be a period when even sharing my home with a pet or a house plant will be too much, as I find for the first time what it truly means to put myself first.   

Caring for my Mother: a day in the life: 14th November

Caring for my Mother: a day in the life: 14^th November

I wake up just before 8 o'clock. It's almost a month since the winter clock change, and I seem, finally, to have adjusted. But I did stay up last night till nearly 1 am. I wanted to be sure I'd sleep, as the night before I had my compulsory, once-a-week sleepless night. Anyway, I've slept a bit late, so I go straight into Mum's bedroom, parts of my brain still not fully awake. I carry the commode from the living-room, struggling a bit to get it down the two steps into her bedroom, past the metal wheelchair ramp, which is folded in half so it only takes up half the space on the steps. When my brother and his wife stay to look after Mum, they leave it out all the time and walk up and down it, but I don't like the way the metal bends under my weight as I walk on it, so I fold it. It's a good design, folding up like that, and even has a carry handle, so you can move it around.

I pick up the bedpans from the stand by the bed and walk round to the bathroom. Mum opens one eye and stirs as I go past. Only one eye-lid ever opens properly, these days. I think she must have had a tiny infarction, or whatever they call it, that has affected that eyelid, because it's always drooping these days, even when she's wide awake.

I empty and clean the pans, dry them and return them to the stand by the bed. I made that stand. It's a prototype of a small table I want to start producing, when I can get my life back. It has a few faults, and the metal tray on top of it spoils the look of it but at least I know the basic idea works OK.

My shed, where I make things, is the best change of all that has happened over the past year - since Mum arrived back from a couple of weeks in Scotland with a pressure fracture in her lumbar spine, after staying with my brother and his wife. This time last year, she was sleeping in the living-room, and I had to bear-hug lift her from bed to chair and back. I bought her a new bed, with electric sit-up and a special mattress calibrated to her weight. Now she's back in her bedroom, new bed replacing the old, huge, king-size one. The new bed takes up a fraction of the space used by the old one, leaving the rest of the room to put wheelchair, commode and other tables and surfaces for me to keep thick panty-liners, body lotions and toilet rolls.

She almost collapsed again in the summer on her way through to the bedroom – again after my brother and his wife had been looking after her. (Not that they were doing anything wrong) So my brother was still there, to pick Mum up in his arms and carry her to bed. That was when we got the wheelchair ramp, so I could wheel Mum between bedroom and living-room. I can't carry her, though she only weighs just over 6 stone now. We had to move her telly and chair down into the bedroom for a while, till the new ramp arrived. We got rid of the dressing table into the garage to make room for everything. I didn't bring it back in once the ramp came and we moved everything back to the living-room again. Who needs that kind of mirror anyway? As a woman who has never sat down to do my hair or apply make-up, I only see a piece of furniture like that as in the way. So it's still in the garage and the space where it used to be is occupied by the wheelchair. This time it was her lungs that were the problem, not her crumbling spine. The latter seems to have stabilized with her new treatment for osteoporosis. But her chest cavity has filled up with fluid, which presses on the left lung. They've drained it now, and she's stopped coughing all the time, but has not regained much strength.

My mind turns while I help Mum out of bed – sit her up, carefully folding back the duvet so it's not in the way of her feet, or catching on her arm as she works it into the sleeve of her bed jacket. Her elbows are dark red with bruises that never go away. She says they're from when she levers herself around in bed, or sits up to reach her cup of water or the bedpan. Slippers onto her feet, one, two, shuffle forward to the edge of the bed, careful not to catch my bare toes on the blocks that prop the bed up higher to make it easier for Mum to stand. Right hand under her tail-bone, left gently under her armpit, sense the moment when Mum's feet are on the floor and push up. I lean, rather than push, using my whole body gently to raise her to standing. All my years of contemporary dance pay off, as I tune in to her body's shift of weight. A short shuffle/swivel as she turns her back towards the commode, grasping the handles on it and lowering herself as I swiftly pull down her knickers. I just get them down before her bottom lands on the raised,padded seat. So many things you can buy on Amazon. I know the corporate, global bastards don’t pay their taxes, but I thank God for them anyway.

Mum wees, then sits there. I go to the little dressing-room that leads off the bedroom and turn on the heater there and open the curtains. We need the extra heat as Friday is bed-bath day. No more showers now. I can't believe she was still using the bathroom last year, though she really used to dread the scary step-up and down into the shower. Now the shower cubicle is full of things, the disabled toilet-seat that used to fit over the toilet in the bathroom, with the new bed hair-washing thing draped over it.

Mum says “Go and put the kettle on,” as I return and hover, waiting for her to finish. I hand her the toilet roll and go through to the kitchen, fill the kettle and click it on. I go back and open all the curtains in the living-room – they'll have to be drawn over again once Mum is in there, but I like to let in daylight for at least this time in the morning, even if there isn't a plant in there to need the light. Mum's eyes can't stand direct light now. The specialist said it wasn't a characteristic of glaucoma, but somehow old people seem to get like that. I soak in the daylight and glory in the open view over the small valley. My eyes are getting to the point of becoming more opaque, and starting cataracts, so I desperately need all the daylight I can get, to see.

The kettle's boiling and I return to Mum. She's ready and I help her stand, pants up, swivel/shuffle and bottom down on the bed again. Gently lift her legs as she swivels to lie down, weight on those bruised elbows

I pull the duvet over her and pick up the pan from the commode to empty down the toilet. I'm more intimately acquainted with my mother's bowel movements than my own, though I've been dutifully completing a test for bowel cancer this week, which the NHS sent to me through the post. O joy! At least I've reached the age where I no longer need a pap smear test every 5 years. My last one this year – I'll be over 65 by the time the next one is due.

I potter off to make tea, leaving Mum to her breathing physio exercises.

Back in bed I muse and sip tea. I turn on my smart phone and check emails, Facebook, scan a digest of the Guardian newspaper. I try to read Dickens for a story-telling event in December on Second Life. But I pick up my phone again and start to play Diamond Digger. It's like a drug, soothing my brain, allowing me to think, but mainly just wasting time. Holding the phone makes my thumbs cramp up. My hands feel arthritic, but it's mainly muscular. When I go for cranial-sacral treatments, she eases out the cramp and my hands are pain free. Foolish to self-inflict but, like I say, it's a drug.

I plug the phone into the charger while I play and think about my carpentry project and my friend who is in hospital as an emergency admission. I have my shed in her garden, rather than in the garden here. That way I can really get away and concentrate on what I'm making, without feeling that every time I go into the house for a cuppa tea, I'll be back on call for whatever Mother needs.

I'm making something for the dance company that is somewhere between a prop and a set. A large piece that is meant to morph from being a free-standing door to a bed, to a table. It's too big to fit into the shed, and I've had all sorts of problems with making it, but I'm on a roll with it. I want to finish this stage of it before the rehearsal tomorrow. I've had to miss quite a few of my valuable days off when I would have been working on it, for hospital visits for Mum, a brother visiting, all sorts of things, each small enough in themselves, but creating a sense of frustration in me as all my plans get cancelled for other peoples' needs. I know what I'm like – once I'm on a roll don't want to stop for anything, even to feed myself, let alone go home and cook a meal for Mother. I was horrible to her yesterday. I was so engrossed, working on it that I didn't notice how late it was till Mum phoned me. It was 2.15. I'd only meant to be there for a couple of hours. Quite unreasonably I was furious. After all – even after a late breakfast, 2.30 was late for lunch. But I felt so sorry for myself I just didn’t want to be reasonable. I raged homewards and threw together a lunch for us both. Everything had gone pear-shaped with the day. When I'd arrived at my shed, my friend, my best mate, was sitting in her park-home crying. She'd been vomiting blood. I thought it was because of all the ibuprofen she'd been taking, because of her very painful foot. This is so horrible. Of course I'm concerned -very concerned. But she won't go into hospital till she's arranged for someone to look after her dog, and I can't do that for her. By the time I get into the shed, I'm already an hour behind schedule.

So, here I am, Friday morning, and still not finished what I wanted to do, musing about whether I can spend a couple of hours in the afternoon in my shed. Friend finally went to hospital after vomiting blood again, so I can just get on when I get there.

I think Mum's finished her exercises, so I go back into the bedroom and begin to get ready for her bed-bath. I apologized to her last night for being horrible to her, so it's not between us. She's more patient with me than I am with her – these days. That's another thing that's turned full circle since I was a child.

We know the routine of this. Mum turns this way and that for me to wash her back right down to her bottom. Baby-wipe for 'down there', towels on the half of her that's not being washed. She looks so defenceless, lying there naked, carefully washing her ears with the flannel, her arms, chest and belly. Then my turn on legs and feet, carefully altering the amount of pressure I put as I stroke down the front of her shins, where the skin is delicate and covered in permanent bruises . I get the inflatable bath thing for washing her hair and place a waterproof bed-protector under her head. Then nestle her neck in the gap in the rim for it, and fetch warm water and shampoo. The hair-bath is meant to drain off into a basin in situ, but I found all that does is make it leak. So when I've finished I take the whole thing, water and all, out from under her and walk quickly with it to the bathroom, my hands barely keeping a grip on it, covered in water as they are. One day it'll slip and water will be everywhere. I tip it out and return it to its place in the shower to drain off.

I come back to Mum and begin to apply body lotion all over her. E45 on her back, special anti-bedsore cream on her bum. Turn on back, she rubs in the Nivea moisturiser to her arms and torso. I put it on her legs. She wants me to apply it right at the top of her thighs, but I am uncomfortable putting my hands there.

I select a clean silk undershirt and knickers. Make sure my hands a free of moisturiser before I put the pad in her knickers, or it won't stick.  It's clothes-change day.

“Do you want to wear some of the new clothes?” I ask.

She got a 25% discount voucher from Daxon catalogue because it was her birthday. It's ages since she bought anything new, so I got a couple of sweaters and 2 pairs of trousers. I select them and start to ease the clothes on over limbs that are still clingy with body lotion. Once dressed, Mum lies there and begins her exercises. I grab up anything I think needs washing, but the washing-machine has been playing up, and I need to call someone to come and look at it. More stress.

I get the living-room ready. Take Mum's neck cushion off the arm of her chair and stick it in the microwave. Draw the curtains closed; re-position Mum's lumbar cushion; pull the fleecy seat-cover straight; position the walker just so; ready for Mum to get up from the wheelchair. Back into the kitchen to start putting the pills out. I can see Mum on the bed from that position in the kitchen, so watch out to see when she's finished her lying-down exercises. In the summer, when I had my brother and his wife here, they talked incessantly to me while I was trying to do the pills and I couldn’t keep track of what I was doing. The year before, when they came to stay and Mum was still reasonably mobile, I left her sitting on the toilet, then forgot she was there because my sister in law was talking so much.

I see her begin to lever herself up to sitting and walk swiftly across and down to her. I help her sit on the edge of the bed and leave her to her neck exercises. I grab the commode and carry it up to its place in the living room, go back, collect mug and Ventolin inhaler from the bedside table, toothbrush and spit-pot from the sink and back up to the living-room, everything in its day-time position. Everything is carefully placed just so, as Mum finds them more by feel than sight these days. When the carer comes, she empties the waste bins on either side of her bed and by her chair, then puts them back in the wrong places, so I come and find a neat pile of used tissues lying on the floor 2 inches to the side of the bin.

I hover while Mum rotates shoulders, turns her head from side to side and rotates it. Her right foot moves in company to the movements of her head. I place her comb beside her on the bed and slip on watch and alarm button thing onto her wrist. She finishes these exercises and carefully combs her still-wet hair.

I help her stand and get in the wheelchair. I forgot to fold out the ramp, so I go and do that. Mum struggles with the footrests on the wheelchair and almost pulls one off. I get her feet right and turn her round to wheel up the ramp. Coming out into the living room feels like coming on stage or something – like- ta-da! All that preparation and here we are! Park just there, footrests swivel, feet on floor, walker (a second one for this room) stand, swivel, and sit. The armchair is raised up to its highest point. Mum sort of props onto it, groping for the control. I put the wheelchair away by the bedroom door. Mum whirs herself down to semi reclining.  New quilt of bought for her birthday over her, TV control to hand, Seretide inhaler, water and spit-pot to hand. She inhales, holds her breath and releases four times then gargles and rinses carefully. Music plays loudly. Always too loud. It's like living with a teenager, though I mostly like the music. I get her pills and slowly hand them to her, one by one. She uses the minimum of water to get them down, but still, she has to drink half a mugful. She doesn't like drinking, so I'm glad to get it down her.

Breakfast now. Usual routine. Banana and special K in a small Chinese bowl. Blueberries. Almond milk. Stir it all in together before I give it to Mum or she'll say I didn't put in enough milk. Place it on her lap.

“Can you do my eye drops?” she says.

I step round her extended feet, shift the walker aside and pick up the eye drops – a new brand that doesn't irritate her eyes like the old ones. Just to hydrate the eyes. She stopped using one of the varieties of drops for her glaucoma about a year ago because they caused too much irritation. I pull up her eyelids, one at a time, and remind her to look up, but she still determinedly rolls her eyes sideways and shuts them as each drop goes in. Back to the kitchen and make tea for Mum. Don't forget a glass of water too.

All done, so I slice bread for my toast and put it in the toaster. I decide I definitely have to call up about the washing machine, no matter that I shrink from adding yet one more stress factor to my overloaded life. I get to the study and switch on the computer while the toast cooks. Let it get its scan over before I need to go online. I usually retreat to my bedroom for my own breakfast, but today I sit at the computer and look up the phone number of the people who sold the washing machine to Mum. They do servicing and repairs too, a good local firm. I find it and leave a message.

It's such a late slow morning because of the bed-bath, I'll have to leave it till after lunch to go over to my shed. I'm anxious about getting on with things. There's a rehearsal tomorrow and I need to finish this stage so I can take it with me. I still don't know how its going to be used, so have no idea if I've got it right. I map out in my mind what I need to do. I've made the door frame, but the shed is too small for me to actually put it up. I did manage to assemble it outside on a dry day and it stood up alright, but I am anxious that it has to be held together with screws, which aren't as strong and stable as proper glued joints. Now I'm making the door which I'm trying to do as light as I can. Someone suggested using fabric but I'm not sure about the fireproofing of that so I'm using hardboard. I've made a frame for it, all I need is to glue it all together. I don't really have a surface large enough to lay it out, so I have to prop everything up somehow. The shed is only 8 foot by 12, I only intended it to be used for making small things, not a ruddy great clunky full-sized door and door frame.

Breakfast over, I set up the nebulizer for Mum. The little machine sits on top of the commode lid. One nebule each of Salbutimol and saline. About 10 minutes. I gently fit the mask over Mum's face and turn it on. It purrs away, its sound competing with the radio. Mum leans back and closes her eyes, seeming to sleep. She always seems to be asleep, and frequently does sleep, her face slack, even with all the curtains pulled - as she can't bear the light. When that's done, brush teeth, then onto the commode. She stays sitting propped with her chair raised till I come back then I take her for a little walk round. She only walks around the carpet now- not round the outside of the sofas – even that is almost too much for her. I hang on to her round her hips, walking in step behind her. There are points where I'm having to put real muscle into keeping her steady.

Then back to the study.

I spend the rest of the morning playing games on Facebook. I know I should do some exercises, stretches and relaxation, even go out into the garden to move, dance, ground myself. It always makes me feel better and I know I need it. But I just can't force myself to do it. I just want to get on with the damn door, I feel stuck and frustrated, so much to do and all I can do is wait to get the time.

I make lunch. Chicken stir-fry. I have to leave easy meals for the carer to cook while I'm away over the weekend, so I do more complex things that need quite a lot of preparation. Once that's over and Mum has had one more visit to the commode, I can finally get over to the shed. It's about 15 minutes' drive. The enforced inactivity of the morning has left me feeling almost febrile, jittery. I glue up the frame of the door which I've already prepared. It's laid out on top of the hardboard, but it's awkward and hard to work on. If only I had a large work bench to lay it out. I inch my way round it to get the clamps on and use picture frame clamps to keep it square. I'm rushing. I'll lose the light soon at this time of year, though there is a good fluorescent light in the shed.

I go into my friend's house to make tea and think. Two of her neighbours have been asking me for news about her. It's nice they're all so concerned, but I haven't the time. They ask if I'm going to stay with her when she gets out of hospital. I explain I have to look after my mother. I've no idea what kind of state she'll be in when she gets out but if she needs looking after, then she can come and stay with us.

I think about the door. My plan had been to staple on the hardboard to the frame, even while the glue was wet. Should be possible if I can keep it stable. But I realize I can't do it with the frame propped up the way it is. This is ridiculous! I should have nipped over in the morning just to glue up, so the glue would have had time to harden a bit, though it takes 6 hours with PVA. I re-think the job and decide I have to swivel everything round the other way. Sighing I go back into the shed and begin to move things. The clamps have to come off as they obstruct me moving it all, but I leave the picture clamps in place. Everything is so awkward, trying to fit it all in. I am regretting even agreeing to do this now. I knew there'd be problems but it was the only way I could be involved in the dance piece as I can no longer go to the evening class, where they work out a lot of the themes of the piece. Well, if it un-glues while I'm moving it I can re-glue and clamp it when it's in position. The hardboard is bending and flapping all over the place. It seems too heavy and floppy for the frame which is made of cheap crappy timber.

One side of the frame snaps at the half-housing joint. I put it all back where it was and put my hands to my face, breathing fast, trying not to cry. Fukfukfuk! It's getting dark now. I don't have the time or timber to make a replacement piece. I swear and cry, jumping about in frustration. OK. Calm down. Think.

First off – I just won’t go to the rehearsal tomorrow. They are actually getting ready for a scratch performance and open-stage event, so they don't need me to turn up with the door. I won't be able to stay for the event in the evening, so will only be helping a bit and watching what everyone else is rehearsing, though it would be useful to see what they want to do with the door. So- cancel that. Tomorrow I'll have a whole day to myself and can take my time. The carer comes at 11 o'clock and again for lunch and tea. So I can get out by around 10.

Breathe! Breathe! Take your time! I un-clamp everything and take it all apart. I'll start again tomorrow and re-think it all. I don't trust the wobbly hardboard, never used such a large piece of it before. Maybe I need to think of a whole different approach. I don't know, my mind is blank. I lock the shed and leave, walking in the dark back to my car. Traffic is slow. It's rush hour so it takes me longer to get home. I'm less stressed now I've made the decision not to go to the rehearsal tomorrow. I phrase the email I'll send, in my head. Not “I've totally cocked up and am in tears.” I decide “unexpected glitch” is a better phrase.

Home now. Cup of tea and biscuit for Mum. Email the dance company. My brain feels overloaded. The combination of anxiety and inaction leaves me feeling unable to interact with anyone. I don't go on Second Life – people would want to talk to me. Even in text that's too much. I watch telly with Mum - Pointless, Eggheads, Strictly Come Dancing, then News on 4 and make supper. Just as I've got supper ready to take to Mum she says she wants to use the commode. I fight back my irritation and pour her soup back into the pot. She takes so long it'll be cold by the time I get her back into her chair. I realize I'm not fit for human company and don't want to blow my top at Mum again. So after supper I go to the study. My phone buzzes. A text from my friend in hospital. “Can you phone D to tell him I'm in hospital and not to come tomorrow?” D is a gardener who comes to us and whose contact details I gave to my friend so she could have him to do some work for her. Her foot has been so painful all summer that it was impossible for her to do much in her garden. He's a nice man but the thought of calling him induces a clamping sensation on my heart. I play a few rounds of Criminal Case on FB while I think about it. Eventually I text her back “Sorry. I cannot face having to take on anything more tonight or talk to anyone.”

A pause, then “OK” from her.

I feel an arse.