That moment when…

I did try, I really did. When I was a teenager. It just didn’t work out.

James Fenimore Cooper’s masterpiece, “The Last of the Mohicans”, failed to thrill my soul. It was dense, old-fashioned language, made all the harder by not being dense, old-fashioned British English. As a witty individual once said of the UK and the US, we are two nations divided by a common language.

As a teenager I tried to read a few classic American novels. “To kill a mockingbird” was the best of them. I understood class and race in my British way, and racism is pretty much racism whatever the language.  I simply did not understand “Catcher in the Rye” as I knew nothing about American colleges or culture. We were not so very Americanised in the 1970s, and teenagers still talked about takeaways, films and wardrobes (with or without magical lands), rather than take-outs, movies and closets. Also we drank tea much more seriously than coffee.

Don’t get me wrong, I don’t have it in for America. It’s just different. I believe Americans are as bemused by our quaint customs as we are by their tendency to eat with their fingers. To be fair to them, most primates do that. Meanwhile, over this side of the alleged Pond, we not only eschew digitally aided digestion, but have enhanced the gustatory gadgets to such an extent that you can end up with more knives and forks per place setting than there are place settings at the Lord Mayor’s Banquet. And apparently using them correctly matters. Well, it may do to some people, but I’m a slob and as long as I start from the outside and work inwards, and can tell a fish knife from a butter knife, I feel I have done my duty to the God-given right and established order.

So there I was, in blissful ignorance of Mohicans, first, last or otherwise. At least, beyond the eponymous punk hairstyle that is, which looked amazing, but my hair would never have allowed it, being all floppy and suchlike. It won’t hold a perm, let alone behave for mere styling gel. It’s a problem alright. Oh the trauma!

Then they invented Daniel Day Lewis and I was made aware of certain key plot elements. One was that he looked awfully pretty running in slow motion. Oh yes. Although I’m not sure if that was in the book.

The other was that I shared a moment of heartbreak with Hawkeye.

If you are unaware of that twist, dear reader, then look away now. It’s the bit at the end, where Chingachgook, the Mohican Chief, mourns the loss of his biological son, and declares that he is now the last of the Mohicans. At which point his adopted son, Hawkeye, breaks his heart; because this is proof that he was never quite a true Mohican even to Chingachgook, no matter how hard he tried. He was alien, outcast, Other.

At least that is my understanding of the story. It may not be true, but bear with me, because this is what I identify with, having had a similar moment in my early childhood.

Let me take you back to the 1960s and the suburbs west of London.

My grandmother was a central figure in my early years. She died when I was 10 but until then she had lived with us and effectively been a mother figure (my own mother being rather ambiguous about motherhood, to put it kindly).  I adored her. I was her special baby. Sometimes she got confused and thought I actually was her little girl, my auntie Win, who had died when she was 7.

Sometimes, if I woke her up during her afternoon nap by breathing too loudly or dropping a teddy, she would stare at me in a confused way.

“Win!” she would say, a little bemused. “Winnie, is that you?”

“No, Grandma,” my heartless little self replied. “I’m EBL. Winnie died.”

“Oh yes,” she would say, and go rather quiet.

“You’ve got me, Grandma,” I would add.

“Oh yes,” she would say again, and give me a hug so I couldn’t see her cry. But I did.

Grandma knew all sorts of things, like how many beans make five and what happened to Don’t Care. She also knew lots of good songs to sing. She had grown up in Holloway, North London, and had a cheery London accent. At Christmas she got tiddly on advocaat, and had to be taken up to bed, singing happily. She taught me all sorts of old songs, probably sung in Music Halls and certainly down the pub if someone would play the tune on the piano, many of them dating back to the 1914-18 war: Little Brown Jug, It’s a long way to Tipperary, Pack up your troubles, the Hokey Cokey, My Old Man, Cockles and Mussels, When father papered the parlour….

She also sang “Maybe it’s because I’m a Londoner” and I sang along, because it has a nice tune.

“Oh no, poppet,” she said. “You can’t sing that.”

“Why not?” I squeaked, bottom lip starting to jut out.

“Because you aren’t a Londoner,” she said patiently. “You weren’t born in London.”

Well, she had it right. I was born Elsewhere, literally beyond the pale of our great metropolis.

“But I’ve been to London, Grandma.”

She wasn’t swayed. I was not a Londoner, and that was that.

She did still love me, but we were not the same. There was a barrier made of time and place and history.

Seeing that moment in the film (or “movie”, if you will), I felt it again, and was overcome that a writer who lived 250 years ago in a foreign land could describe my heartbreak. We shared a common humanity. I learned we are all the same in other ways, even those of us not born in London.

Have you had that kind of moment, in a story, that made it more real than real life?

To all of you, wherever you were born, we may still share our broken hearts.

Namaste.

Missing

So – just to bring you up to speed, or remind you, or let you know: my mother died just before Christmas. Don’t worry, you don’t need to feel sorry. She was old and sick and had a poor quality of life despite the best efforts of a number of people; it was her time. She believed in life after death and was ready to go and be with her family again.

I am going to tell you about her dying and her living with dementia Don’t read it if you might get upset.

My mother suffered from advanced dementia, and until last June had been living with us. As her mental condition and physical frailties worsened, it became increasingly apparent she was not safe to stay at home any more so we moved her to a local residential care home where they looked after her far better than I could manage with my intermittent checks between travelling away for work. I took it hard. I felt I failed her because I knew that it would have been the last thing she wanted. Fortunately she didn’t remember that, even though I did, and so she was very happy in her new home. Dementia can have some upsides to it.

When she moved in with us, we built a granny annexe and designed it for wheelchair access. We didn’t make it easy for dementia, for example by making the kitchenette logical. She moved in after Christmas and by Easter we knew something was badly wrong. Finally we had the diagnosis. It was May 2008.

I remember one day, fairly soon after the diagnosis, a mental health worker came to see her, and talked to her in that horrible high-pitched voice about doing some knitting. I had suggested something like that might help her come out of the shell she was constructing.

“Shall we do a little bit of knitting, dear? You’d like that wouldn’t you?”

Well, really! She was suffering from early stages of dementia, not a backwards toddler.

“No,” she said firmly. And set her mouth and turned the television on very loudly.

When the mental health worker told me that my mother was “uncooperative” and “difficult” I laughed at her and said if she had spoken to me in that tone of voice I’d have stuck the knitting needle through her eye. So I got a worse label and we never saw them again because my mother had “chosen not to accept help.” Idiots.

Dementia is a slow disease. We went through phases, and because she had vascular dementia they were often sudden and pronounced. Yesterday she knew how to turn on the television, today she had forgotten. Yesterday she knew all the grandchildren, today perhaps two of them. She wound backwards through her life, shedding people and places as she went; talking about me as a child, then about meeting my father, then about her parents, then settling on a loop asking about the weather every sentence because she remembered nothing more.

“Is it cold out?”

“A bit chilly, nice and sunny though.”

“Oh, that’s nice…is it cold out?”

And so on endlessly. I am not covered in glory here, least of all with my snapping and snarling at her stupid bloody questions.

The December before last she suffered some internal bleeding which wouldn’t stop because she was on warfarin to thin her blood (to reduce further strokes and memory loss). The doctor and I had a long and earnest conversation about which death was worse: bleeding out or stroke. I agreed bleeding out was worse and we took her off the tablets. She declined more rapidly.

Last December she developed problems in her foot associated with her diabetes and poor circulation (no blood thinners!) and eventually had to have a toe amputated. The disruption, operation and subsequent infection all proved too much and her lungs gave out soon after. She had pretty much everything wrong with her: asthma, emphysema, arthritis, rheumatism, diabetes, heart arrhythmia, furred arteries, cataracts, deafness, stomach problems (as a side effect of medication) and, of course, vascular dementia. One of them had to get her in the end, although she eluded them nimbly until well into her 88^th year.

Then my mother finally died. She didn’t quite want to, but she couldn’t find the strength any more. She wasn’t afraid or worried, because her horizons were too close for that. I sat with her, holding her hand, and Sigoth and various grandchildren waited with us. One moment she rattled a breath. Then nothing came after it.

We scattered her ashes a couple of weeks ago, on the day after her 88^th birthday.

My mother’s death was not what I expected. Of course, my actual mother, the one I remember from childhood, vanished years ago, eaten by dementia almost before we even knew it was there. It crept up on us and her from the shadows. My family didn’t get dementia. We have heart attacks and strokes usually, or general immobility and decay from rheumatoid arthritis. We don’t have brains that melt. At least we didn’t until this time round, so I was unprepared for the symptoms and assumed my mother was being bloody-minded when she wanted me to do basic things like turn on the washing machine, because she had “forgotten how”.

“Don’t be ridiculous!” I told her as she sat there with her list of jobs she wanted me and Sigoth to do on our precious Saturday off work, complaining that we never came to see her.

“She’s doing it to get attention,” I thought. Because sadly that was not an unlikely explanation; my mother was a needy individual only too often.

Of course, during this slow evolution into a new person she was aware of the changes and frightened, confused and angry in turns. Thanks to dementia, we were glad when she was finally so ill she didn’t know what was happening at all and so was not afraid of it.

We actually had it easy of course, if this kind of suffering is a competition. She didn’t wander, she didn’t get angry or aggressive, and she didn’t do too many dangerous things (apart from sticking the knife in the toaster and fusing the lights) because she became incredibly passive. As a responsible adult she had always preferred to be looked after, and my father had joyfully accepted the challenge. This attitude became more pronounced over time, so there were few “issues” as her condition worsened. By keeping her at home with us I was the best person to understand her fraying mind and predict what she would expect, so she was comfortable and rarely disoriented enough to become angry. She was described as an “easy” patient, because obviously the most important thing about someone with dementia is how much they disrupt the rest of us. As a result their behaviour garners them blame or praise for being bad or good.

I expected to feel sadness, guilt, relief, regret, possibly anger and even loneliness. I felt comfort and love, both of which were entirely unexpected. I felt that finally she did appreciate me – if only I had known that while she was alive! I didn’t feel as if I had let her down or done the wrong thing, despite the fact that for a number of years she had been letting everyone know my failings. She said some pretty terrible things at times, most of which I ignored as symptoms of mental imbalance, but some hit home and I carried with me. Some of them were deserved.

The final year was hard going, and in the end it was just waiting, some days with more patience than others, for her to die. I had plenty of time to be ready for the actual event. Every day I saw her was a small guilty disappointment; every time the phone rang, I wondered if this was it, the call, until one night at 3am it really was the beginning of the end.

My mother and I were not close. It helped as she declined, so that I did not feel such terrible loss; but it made continuing as her carer harder. Dementia gets you either way.

In contrast my father’s death was sudden and devastating. He died in 1992, just as I was home to tell my parents about the imminent arrival of Offspring Number 4. Dad was really pleased and excited; he liked children. That evening I took my mother out to a concert for her birthday present and when we got home my father was dead. He had had heart failure during the evening, after going to bed.

I was furious with him for leaving me to deal with the family he supported, which included my elderly aunt as well as my mother, to deal with a bankrupt business and a derelict shop property, to re-house my aunt, sell the shop, re-house my mother, sell her house and all while pregnant, working full time and having three other young children. Sigoth got me through it somehow, although we struggled at times under the pressure.

I’m not the kind of person who would do well in one of the caring professions. I get bored with other people’s problems. I get frustrated with slowness. I could be ready to rip the throat out of a doctor who talked down to my mother, but I didn’t want to spend time with her over a cup of tea repeating how warm it was or wasn’t outside. She didn’t remember if I sat with her or not anyway.

Meanwhile, my memories of my father are not sullied by him declining until I no longer wanted to see him. Dementia destroys other people’s memories of the living person and replaces them with doddering, shambling simulacra. It’s the Zombie Apocalypse.

Death isn’t noble, but sometimes it relieves and even pre-empts pain.

The final gift that dementia leaves us is fear. Every time I forget something, every time I have to check if I locked the door or turned off the light, every time I can’t recall a name or a film title or where I left my glasses, on each of those occasions a little voice now pops up and says cheerfully:

“Hi there! Are you getting dementia? Is it all going to happen to you?”

Meaning…

Am I going to drive my family mad and break their hearts and call them names and take so long to die that I turn into a stranger first, like some kind of alien shapeshifter?

Am I going to have carers who make jokes I don’t understand, often about me?

Will I forget to eat or drink and then be hungry and thirsty all the time?

Will I soil the bed and not understand what is happening?

But before I get that bad, will I experience those things anyway and yet still know what they mean and suffer terrible shame and humiliation and confusion?

Thanks for the memories, Dementia.

I want to be clear that every dementia journey, like every human, is unique and special. My mother’s, and my, experiences will have some similarities to others, and some quirks all our very own.

If ever anything taught us the Buddhist notion of patient acceptance, this is it. Or as a Christian might put it:

God, give us grace to accept with serenity
the things that cannot be changed,
courage to change the things
which should be changed,
and the wisdom to distinguish
the one from the other.

Living one day at a time,
Enjoying one moment at a time,
Accepting hardship as a pathway to peace,
Taking, as Jesus did,
This sinful world as it is,
Not as I would have it,
Trusting that You will make all things right,
If I surrender to Your will,
So that I may be reasonably happy in this life,
And supremely happy with You forever in the next.

Amen.

Never give up, never surrender, and never blame yourself. It is what it is.

Namaste.

Words to live by

The other night, between dashing from this thing to the next, I stopped to listen to the wireless. Well, it was Radio 4, and being so means it was definitely the wireless, and not the radio, despite the confusion of nomenclature. The programme was “Just a Minute”, hosted by the eternal Nicholas Parsons, wherein panellists speak for 60 seconds on a given topic without repetition, hesitation or deviation. Hilarity, as they say, generally ensues, and occasionally awe. I grew up listening to the likes of Clement Freud, Kenneth Williams and Willie Rushton being witty and erudite; today we have the joys of Paul Merton, Josie Lawrence and Sheila Hancock.

Well my dears, I would be terrible at the game in question. I repeat and fade on an endless loop, like a 60’s pop idol, or an indecisive pilot circling forever above my linguistic destination and never quite arriving. I go into some kind of verbal holding pattern above my target topic and fail to land on the runway until the airwave traffic controllers have died from frustration or boredom, and occasionally both.

This week one of the topics was “Your family’s motto” and it was most certainly amusing. It also sparked a question in my little grey cells as to what the motto above EBL Towers, when it is finally emplaced, should be. For many years we have lived by “All you need is gloves” and, in extremis, “Never give up, never surrender!” Yet for all their many merits, these do not quite encapsulate the spirit and verve that is EBL en famille.

What are the crucial signs of one of the Bagladian clan, also known as Gentes Bagladii? Well you might ask, dear friends, but until now I would honestly have struggled to respond. It’s hard to think of a single uniting force beyond customs – most of us who are members of said clan of clans like history and science fiction and games and films and rock music and technology and art and stand-up comedy and good coffee, curry and chocolate (not necessarily all at once).  But these are ephemera. They are trivial in terms of what makes a family. They are simply things we can enjoy together.

“What this family needs,” I decided, “is a motto, to be our mission statement to the world.”

It will, of course, let the rest of you, the non-Bagladians, know what you are missing by being non-Bagladian in the first place, and serve you right. It will help you understand how to get the best from us and how to avoid the worst.

Yet the more I thunk and the harder I thunk the further away I found myself from an answer. After all, if you prick us do we not bleed? The answer to that is yes, fyi. Just don’t try it, because we have big, strong teeth, and you know what they are all the better for. But if so, in what way are we different, unique, special; because we all want to feel special, don’t we, and isn’t a motto a way of making that happen?

I briefly considered “By the grace of God and a toothbrush” which stood me in good stead for some years as a younger EBL learning her way about yon mortal coil. But not all of us believe in the big G so that wouldn’t do.

My grandmother had many favourite quips and sayings, some of which will haunt me to my dying day, such as “You’ve got to eat a peck of dirt before you die,” “Cheer up for Chatham – Dover’s in sight” and “Don’t-Care was made to care and locked in a box until he did.” I think her intention was to boost morale, but her confidence may have been misplaced. In any case they are hardly mottoes.

A motto is intended to express a higher principle or ideal to which one cleaves., and generally they seem to revolve around the virtues: chastity, temperance, charity, diligence, patience, kindness, and humility. You can see why I am struggling here. EBL is pretty short in the virtuous arena. Pretty damn short.

To the world of whimsy! I am currently torn between “When the going gets tough, the tough keep calm and eat chocolate” and “Let’s always take whatever comes, and never try to hide, face everything and anyone, together side by side.”

Until I decide we will stick with our old favourite, “All you need is gloves” because, indeed, gloves are all you need.

What would be your motto?

Namaste.

Seasonal knitting

Well, my dears, it turns out life just won’t let me get on with important things, like blogging and knitting.

All I have managed so far this month is a tiny snow person and this snippet of words.

Hey ho.

Here’s to seasonal cheeriness, warmth and peace for you all.

Namaste.

Happy Yorkshire Day 2014!

I knitted a tea cosy and it seems the best day to use it!

L is for Little Lights

Occasionally I post about life as a British Quaker under the structure of the Quaker Alphabet Project 2014. I haven’t done so for a while and am in danger of falling behind schedule, so here is a post for the L of it.

There is a perception often quoted, not unreasonably as it turns out, that Quakers are a bit on the mature side. It’s true we have “Young Friends” who are pretty active. However, they remain sadly outnumbered by the Silver Horde, at least in my neck of the woods, and in keeping with many other religious congregations in this country. There was great excitement the other month when a bona fide young person of the teenage persuasion applied for membership of the Society. It was like getting a letter from Elvis c/o the Loch Ness Monster and delivered by a leprechaun riding a rainbow. What I mean to say is, it was a bit unusual and slightly thrilling.

Some years ago I was fortunate to be a member of a relatively large Quaker community with three (count them!) age groups for under-16s. It was not the usual experience of Quaker groups up and down the length of the land. Since moving Up North I am now a member of a small and chronologically-well-endowed group. Yet we do not despair at our reducing horizons because we now have two young people among us – a male toddler and a female school person. They bring their parents along about once a month and keep company with various members of the meeting who enjoy playing with toys and drawing pictures and singing songs while the parents snooze in the main meeting room. It’s an act of kindness really.

The best bit of all is when they join everyone for the last fifteen minutes of the meeting for worship. In Britain, Quakers usually hold silent meetings for worship (not having “programmed” services like, say, Anglican churches, with sermons and singing and standing up and sitting down all and repeating words out loud). The people present sit quietly, apart from the Rumbling of the Stomachs, and wait for ministry to find them. Most people think it is a bit odd, but nevertheless the end result is a usually a quiet room filled with slightly sleepy people who have been sitting for 45 minutes and are beginning to feel it.

Enter our Youngest and Brightest! We hear them clattering along the passageway, with their retainers encouraging them to be quiet by making lots of loud shushing noises. The children usually are making no real noise at all, but never mind. The door swings open and in comes the first child, beaming from ear to ear to see all the old folks grinning at him, and often reaching out hands to welcome him inside. Then his sister, a little more self-aware and so slightly shyer, comes in behind him, composed and clutching some treasured picture to share with us. It may go straight on the table in the middle so we all crane to see it, or she may wait until Notices are read out at the end and then wave it at us. Meanwhile her brother sings to himself or stumbles around from one arthritic knee to the next, smiling up at the faces and dribbling a little. Sometimes we dribble back. It depends on the medication.

Quakers are very fond of using the imagery of the Light Within or Inner Light to talk about their relationship with God. Nowadays we don’t generally describe ourselves as Jesus’ little sunbeams, just talk about Light in a more general, non-denominational way. Early Friends in the 17^th century were more direct in their writings about God and Jesus, but still the imagery of Light was fundamental to much of their thinking.

I was under great temptations sometimes, and my inward sufferings were heavy; but I could find none to open my condition to but the Lord alone, unto whom I cried night and day. And I went back into Nottinghamshire, and there the Lord shewed me that the natures of those things which were hurtful without, were within in the hearts and minds of wicked men… And I cried to the Lord, saying, ‘Why should I be thus, seeing I was never addicted to commit those evils?’ And the Lord answered that it was needful I should have a sense of all conditions, how else should I speak to all conditions; and in this I saw the infinite love of God. I saw also that there was an ocean of darkness and death, but an infinite ocean of light and love, which flowed over the ocean of darkness. And in that also I saw the infinite love of God; and I had great openings.

George Fox, Journal, 1647

But when our children join us in meeting for worship they bring that infinite light and love with them and in abundance. It is a gift to us and one for which we are humbky thankful.

Namaste

Echoes

It’s been a while since I last wrote on this blog and that is because I have been dealing with echoes and ghosts; which is just a pretentious way of saying “my mother”. To recap, my mother has dementia and I have been caring for her in a partial way, with lots of support from Social Services, while she slowly and surely unravels before my eyes. There is an episode of Doctor Who called (I think) “The Silence in the Library” where someone’s personality is caught in a machine. At first it sounds as if they are there, and all that needs to be done is to find a way to restore them to their body. Then you realise they aren’t there and it’s just a recording of their final thoughts, on a repeat and fade until finally they are let go. The person who was my mother faded out a long time ago and all there have been are echoes of her occasionally surfacing in a grim pretence. Such is the experience of dementia carers, letting go one brain cell at a time.

It all began a long time ago, probably not long after my father died in 1992. Despite a successful history of working as a senior PA to some very demanding Directors in multi-national organisations, she seemed not to be able to cope with the basics of everyday life. My father had done the traditional thing of managing finances and bills. He even did the shopping because he didn’t trust my mother to stick to a budget, and he was probably right. She was impulsive and often unrealistic about what they could afford. However, she did at least know how to write a cheque and read a bank statement, even iif she didn’t feel confident discussing savings accounts and interest rates with bank staff. So I stepped in and helped then gradually took over managing her money and bills. To be honest I think she could have done it but preferred not to if someone else would; that was the way of her, and I had grown up with the expectation that my mother was someone you looked after.

When we as a family moved back up north, she followed. I found her a flat in Sheltered Accommodation as an insurance for later years when she would grow frailer. She was happy with that and settled in. She had lots of aches and pains, and a very good doctor who gradually worked through all the symptoms and decided her diagnosis of arthritis, given 20 years earlier, was in fact wrong and she had spondulitis. He arranged an operation to sort out a problem with two collapsed vertebrae and during her recuperation she contracted viral meningitis in the hospital and died. They resuscitated her but she was never quite the same. Not long after that we began to notice she was not really quite as mentally competent as before, and I suppose her spiral into dementia had become a very real and present thing, either brought on by the trauma or coincidentally exposing itself for the first time.

What was that like? She was frustrated of course, but so was I. We didn’t know anything was wrong. It seemed she was deliberately trying to get my attention by saying she needed help with basic jobs she had been managing perfectly well only days or weeks before. The problem was, that my mother would behave in that way to get my attention anyway, even when I was a child, so I didn’t suspect anything at first.

As she struggled more, I began to suggest she consider increasing her care arrangements. She swore she didn’t have any care arrangements despite the fact she had carers every day to help her shower and dress. My spider senses began to tingle.

Things reached a crisis when I realised that she was eating bacon that was green (no, my dears, in real life green eggs and ham are not good for you!), and that she was mixing up her medication and taking completely random quantities of Warfarin. To be fair, you need a Ph.D in Mathematics to manage Warfarin doses anyway, because they involve Advanced Calculus in working out which colour and in what quantity you need to take them each day, and in addition this changes on a fortnightly basis depending on blood tests.

We talked it over and she said she wanted to move in with us, so we built a granny annexe and made it so. She couldn’t follow the discussions about planning the layout, which I took to be laziness. The day she moved in she claimed she couldn’t remember how to use the washing machine, which I took to be contrariness. A few weeks later, she listened to one of the Offspring playing the guitar, and observed it was a shame I had never learned to play an instrument.

The family froze. It was my guitar, and I had played classical music for years. My mother had tapes of me playing which she listened to after I left home for university. Something was wrong in a very big way.

I spoke to the GP and he arranged an assessment and eventually she was diagnosed with vascular dementia, for which there is no treatment beyond anti-coagulants such as Warfarin (which obviously she was already taking for other conditions). That was in 2008, and the dementia was already reasonably advanced. Her contrariness and laziness were in fact her brain falling apart at the seams, and I hadn’t realised. No one in my family had had dementia before. We had planned the annexe layout to cater for mobility problems but never for mental problems. It was a long time before we really understood what the diagnosis meant.

And so she has faded away, receding from me and returning to past lives where I cannot follow. She no longer knows her grandchildren; some days she may not be sure of me or Sigoth. Every day when I go to bring her through for dinner I listen at her door to try and hear her moving, frightened I’ll find her cold and stiff in her chair. Every day I wonder if she will panic because I am an intruder, and bring on a major stroke. Every day I hear her asking the carers the same question over and over again, on a loop, and inventing answers to their questions.

I admire her ingenuity at hiding her condition. She is expert at getting people to ask closed questions so she can just agree amiably. She tells everyone cheerfully that she makes herself lunch every day and doesn’t see anyone at all for days at a time. It’s all untrue but she can’t remember. She takes a bite of an apple or pear then leaves the rest because she forgets it. She has a permanent cup of cold tea at her side, equally forgotten. She asks me for a drink because she is thirsty despite the beaker of water next to her. She can’t be trusted with the toaster in case she electrocutes herself sticking the knife into it. She can’t work out how to change channels or volume on the TV or how to write a Christmas card or address an envelope. She can’t remember the way from our living room back to her sitting room. She is convinced that she can do everything for herself and doesn’t need any care, or indeed, receive any care.

She sings to herself in her chair, and is happy. She leaves the TV on all day for company, even when people call in. She smiles at people and reads out the headline from the newspaper over and over. She wonders about the weather out loud and recites clichés to sound like conversation but can’t respond to other people’s comments.

At Christmas we had to stop her anti-coagulants, designed to reduce the strokes, because of internal bleeding. She is at greater risk of mini- and major strokes than ever, and over the past 6 months she has slid away from me at a faster rate, disappearing around the bend of the helter-skelter while I try to follow.

We have been very lucky that she has not displayed any of the difficult behaviours that often accompany dementia. She isn’t aggressive or violent. She doesn’t shout or swear or hurl abuse. She just gets confused and stressed if her routine changes, so that a trip to the doctor can bring on another mini-stroke and another step down the stairs to a final oblivion.

She is no longer my mother of course. It used to be just me and her, after my father died, but now it’s just me. And her, over there in a different place, her own little island of dreams. There’s no bridge any more, no shared stories or memories. She sailed out past them some time ago, and now is living in her own childhood, before Dad, or I, came along.

Every day I care for her. Until recently when I went to the doctor and he told me that my recent asthma symptoms were in fact stress. That my heart palpitations were stress. That my sleeplessness and irritability and forgetfulness were stress, stress, stress. And that stress is Very Bad for your health. He gave me the look that said “things must change.”

I talked to Sigoth about the fear of opening the door to her room every day and he looked at me with the same look as the doctor.

I called in Social Services to do a review. They gave me the look too.

It was the look I had been giving myself secretly, when I was alone in the night. I knew they were right but I felt like a traitor and murderer. Because she always said to me she would rather die than go into a home.

Yesterday we took her to a local care home and left her there, like an abandoned kitten.

We didn’t tell her before that morning, even though it took some weeks to plan. Whenever I told her I was going out, even for a few hours, she would panic. If she thought we were away overnight she would get completely hysterical, crying and shouting and begging me not to leave her, inducing asthma and going blue. So I didn’t tell her in advance we were taking her to her worst nightmare. Talking it over with the various people involved we all agreed it would be counter productive.

I have a rule that I never lie to my mother, but I lied by omission for weeks. I plotted behind her back and against her express wishes. I put my health above hers, because there was a genuine risk that the move could induce a stroke or heart attack which would kill her. All the Health Professionals agreed. It was a genuine risk. Then they would give me the look again. Things still had to change.

On Thursday night we had our last dinner together, secretly and silently and lying by omission. No toasts and farewells, no reminiscences about what had been and what adventures may be to come, no thanks or time to share unspoken love.

Yesterday morning after the carer had come for the last time I said to my mother “I need to talk to you,” which is the phrase people use instead of just talking to you because something is wrong.

She knew that much. She looked like a guilty child who was about to be told off, because of course that is how it works now. She is innocent and I am the parent who spoils her fun and tells her off and chivvies her along. Take your tablets, use the inhaler, eat your dinner, drink your tea, go to the toilet, get your shoes on, turn off the TV.

“Turn off the TV,” I said and she did. She looked all big-eyed and anxious and I hadn’t even begun.

I told her I had found somewhere to stay for a while to have a break and to give me a break, that I couldn’t look after her any more. She gave me a look too, the one she gave me when I was very small and did something very bad. She was extremely angry. Her mouth went into a line so straight Blondin could have used it walk over Niagara Falls. Her eyes narrowed. Her face was frozen into some kind of kevlar mask. I was a Very Naughty Girl. She argued. She didn’t need looking after.

“You have to give me a break,” I said. “I’m not well.”

Yes, I resorted to emotional blackmail.

For a few moments she protested some more that she didn’t need looking after. Her body was stiff and tight and rebellious. Then suddenly she relaxed and asked where she was going. It may have been another mini-stroke, or it may have been she reached the end of her attention span.

“Not far, just up the road,” I said comfortingly.

“How long am I going for?” she asked.

“Just a few weeks, see how it goes,” I soothed.

Her assessment is for six weeks, so it wasn’t a lie. The omission was that no matter what, she can’t come home. It is no longer safe for her, and I cannot cope anyway.

We went through those two Q&As all the way to the home. When we got there we sat in the sun for a few minutes and I pointed out the flowers in the garden.

The carers came out to say her room was ready, and we went in. As we went in she asked again.

“How long am I staying?”

“Just a few weeks. See how you go.”

The next time she asked the carers said it instead, skillfully, brilliantly taking my lead. I loved them for it. We took her to her room and the carers bustled around her and fussed and pampered and she enjoyed that. We saw the hairdressing salon and she liked that. We talked about knitting and embroidery that she could do, and people to talk to. She liked that because she never sees anyone for days on end at home. She just manages on her own, you know. Company would be nice.

I put out some of her photos in the room, of her parents because she doesn’t know anyone else, and her Rupert Bear pyjama case and her favourite stuffed toys. We had her knitting bag and her books and her newspaper to read to the staff, and her radio that she can’t use but recognises, and her blanket for her knees. It looked a tiny bit like home.

The carer suggested she finish unpacking, so I said I just needed to pop into the office.

“How long am I staying?”

“Just a few weeks, see how you go.”

“You will see me, won’t you?”

That was new. It was an echo.

“Yes, very soon. I’m just down the road.”

They told me to give it a week before visiting to let her settle properly.

As I walked down the corridor I heard her reading the headline to the carer, about carrots curing cancer.

I went to the office, it wasn’t a lie. There was paperwork. But I lied by omission because then Sigoth and I got in the car and drove away.

We do what is needed, and we do our best.

Namaste

Into Darkness

There has been a fair share of darkness around just lately: Rara’s troubles, endless parades of suffering in the news, and seemingly difficulties for many many people at every turn. For EBL there are also a few hard decisions to be made and actions to be taken, and generally the gloom of a British spring matches my internal mood like a carefully chosen designer accessory.

I try to see past it. I try not to allow anger, sadness, pettiness, cynicism and depression get their collective hooves in my door and take their toll. I try to let it go, and then berate myself for my heartlessness.

“What good,” I admonish the demon on my shoulder, “will my crying about it do?”

I act where I can, hold dear ones in my heart, accept that at this time and in this place even I, EBL, have limitations. Obviously once I am Ruler of the World then things will change. Uppances will arrive with vigour. Hens will indeed roost once more in their hereditary establishments. Desserts of a legally balanced variety will be served with gusto. Indeed, everyone will be equipped with a sickle and sent out to reap whatever they have sown. Sadly, until then we wait.

It also occurred to me, either as febrile self-justification or perhaps a sliver of wisdom, that there cannot be light without darkness.

While I mused thus over an early morning beverage, Sigoth read me a joke. I decided then and there that, along with wishing all people peace and joy, I would also wish them a GSOH (good sense of humour). When we can laugh at our petty foibles and pointless posturings, then we can focus on what is important and how we can make practical and achievable changes. And then, my dears, we triumph. The light returns.

So to help me in my new resolve, I want to share with you the joke Sigoth read to me. It’s a Golden Oldie, but I commend it to you as a starter for ten. Brace yourselves.

An optimist thinks the glass is half full.

A pessimist thinks it is half empty.

But an engineer knows that the glass is twice as big as it needs to be.

Whether you are in light or darkness, I wish you joy and peace and laughter.

Namaste.

 

B4Peace: A Tiger And His Boy Teach Empathy

This month’s Bloggers for Peace challenge is to work on empathy.

For this month’s challenge, I would like to work on empathy. Empathy is being able to step into the shoes of another and see things from their point of view. I challenge you to empathize with other bloggers this month

Are you kidding me? EBL is hardly the Empathy Bag Lady. How much do I have to suffer here? EBL and Empathy are rarely associated within the same continent, let alone blog. It’s like matter and anti-matter.

With that in mind I want to write about comics.

Say what now?

Well, it just so happens that I recently acquired a couple of treasures in a local charity shop. I love charity shops. I browse them whenever and wherever I can. There’s the little frisson of excitement when you go in, wondering what indescribable find you are about to make, the sense of being on the hunt, prowling like a mighty predator along the (slightly musty) shelves and bookcases. If I don’t find anything I learn patience, like the lioness. If I do find something I pounce like the cheetah, clutching my prize at the till where the kindly volunteer tries to work out how to count my change. Often I take back items bought a few months before and obtain a vicarious sense of achievement by de-cluttering and donating to a good cause. There simply is no down-side.

The treasures in question were a couple of collections of Calvin and Hobbes comic strips, detailing the escapades of an imaginative but somewhat lonely boy and his stuffed tiger. Eldest Offspring has pretty much the complete set of books ever published but the wee scamp took them with him when he moved out and I really miss reading them. Admittedly this was about 10 years ago, Eldest Offspring being almost at retirement age already, but the pain has never entirely faded. Then I saw a couple of tattered copies casually chucked onto a shelf in the local Hospital League of Friends shop, and was transported, my dears, simply transported, back to a wonderful world.

Alright, EBL, you like comic strips. So what? How does this contribute meaningfully to a Bloggers for Peace post?

I am assuming anyone asking that question at this point has simply never read one of these jewels. In which case you need to be very ashamed and rectify your lack by going to the relevant website immediately.

http://www.gocomics.com/calvinandhobbes

See what I mean?

There are so many reasons I love these comics, but for the theme of empathy I suppose I would pick especially those wordless cartoons expressing a small child’s sense of wonder and excitement at being alive.

http://www.gocomics.com/calvinandhobbes/2013/08/18#mutable_988591

 

 

 

If we could all recapture that feeling of being in the moment, which characterises those long, sunny days of summer spent outside, doing crazy stuff just because, then the world would in fact be a better place.

While I was away recently, and after I drafted this post, I found out that Bad Things happened to Rarasaur. The bad things involve her being sent to prison unjustly, which you can read about in this post and the ones following it. It turns out I may have some empathy after all because I am still somewhat in shock having just caught up with events.

So I want to spread some #rawrlove through this month’s post about peace, being as Rara is one the best bloggers for peace (or of any kind of blogger in fact), being as she loves comics too, and being as her family need what support we can all give. A good way of doing that is taking a look at Dave’s Redbubble storefront, for example, and perhaps make a purchase.

Love knows no boundaries, it is all around us. Some days it may be harder to discern it, but have faith it is there.

Namaste.

 

B4Peace: Birthday for Peace

What a thrill – the B4Peace t-shirt arrived on my birthday!

 

Many thanks to Kozo at everydaygurus.com for coming up with the idea, for nurturing it and for sorting out the t-shirts. Go and visit him.

Namaste.