Thursday, 24 March 2016

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

Monday 7th 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.

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. 

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. 


  1. Cath, I just saw this today. I am glad you have SL for support and escape and for just being you when it is very hard to be fully yourself in the solid world. Caring for a loved one is difficult. You are in my thoughts.

  2. Oh, my... I am so glad to have your blog to read, Cath/Dubhna. The journey about which you write is a challenging one - filled with love and tinged with so many other emotions.
    Thank you so much for sharing and your Mum have my warmest wishes for grace and peace.

  3. Blessings on you both. Very touching post and I can relate to much of it.