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.

Circle of life

Time to update regular readers on EBL family affairs.

You may recall from earlier posts this month that my mother was not doing too well. Unfortunately she died on 17 December. The chest infection was not a chest infection at all; it was simply lung disease and stress and old age. It was life fading and slipping away. It was, in the raw, the circle of life.

Sigoth, two Offspringses and I were with her for her last hours and watched her through to her last breath on earth. She was not really conscious. We held her hand and smoothed her forehead and moistened her lips. Then we said goodbye.

She believed in life after death and probably reincarnation. Her beliefs were different from mine. Possibly she was right and somewhere a squalling infant is her new home. I’m pretty sure, from a Buddhist perspective, she will make it back as a human. She did little harm overall and meant none at all. She was a nice person.

If that sounds like faint praise I suppose it’s because her ups and downs, her achievements and failures, her light and her darkness are not really for public consumption. Her generation did not live its life publicly, as people do now. Family is family. The rest can mind their own business.

What I felt during those last hours was love around me. I have been humbled by the way people have mourned her loss. Carers at the residential home and nurses on the ward were tearful and genuinely sad at her passing; they had known her only for a few months, or even days. She touched their lives in positive ways, which is a great achievement. Her friends have shared their memories with me, as have my friends, some of whom have known her almost as long as I have.  Universally they remember her as kindly and welcoming and caring. There are worse legacies.

This picture is of her and me around my first Christmas. I apologise for the gratuitous nudity. Obviously in those days colour had not yet been invented although later it transpired the tub was pink, as am I although a slightly different shade.

To life, my dears, and what we make of it, and all we leave behind!

Namaste.

Conversations

It being that time of year, it felt only right to be thinking about lists. However, the one I am about to present may not be quite as tinsellicious as some of the others floating about the ether over the holiday season. It’s a list of Conversations I Do Not Want To Have (But Sometimes You Have To).

1. The Father Christmas Conversation

Unlike Greg Lake, I never believed in Father Christmas. I never looked to the skies with excited eyes. That was because my dad was Father Christmas for the local Rotary Club, and everything was clearly an adult agreement to keep children happy and raise much-needed funds to take old people to the seaside in the summer.

Like Greg, I did like the Christmas Tree Smell, which is why to this day I refuse to buy a plastic, no-drop-needles so-called tree. We usually lash out on a Nordmann Fir, which doesn’t drop as much but also smells less. It’s all about compromise.

That conversation with small children may well be fraught. I know someone who is genuinely distressed still (after 30 years) at the discovery that his parents had lied to him without batting an eyelid. In a supportive fashion I tell him to get over it, but he remains traumatised. I suppose there are sometimes key moments when our parents are revealed as merely human and those moments can live on with us beyond all reason. Which I suppose takes us back to poor old Greg Lake seeing through the disguise.

I have never had this exact conversation with the Offspringses. In fact they carried on for years trying to keep Sigoth and me happy until one year we all agreed to stop messing about and just enjoy the game as part of the Spirit of the Season. I’m so glad they learned pragmatism at least.

Status: Successfully Negotiated

2.  The Teenage Sex Conversation

Worst. Case. Scenario. It happened.

Offspring missed school the day of the Class Talk due to a virus. Teacher told me I would have to do the catch up instead.

How does that work? We pay taxes so some other blighter has to explain the birds and the bees to the nation’s giggling pre-adolescents. I’m not qualified for this. It wasn’t in the ante-natal classes, and you don’t get anything else in the way of advice once the sprog has popped. I’m British, for goodness’ sake. We don’t have Sex, although we do have Euphemisms aplenty, along with Carry On… films, which also involve giggling. Euphemisms are often counter-productive in this kind of situation though. So I got a book and we read it together and no more was said, quite rightly.

At least, no more was said until hormones kicked in good and proper at the mid-teen point and I found myself having the follow-up conversation about condoms  and who slept where when they came to stay over and why the law was in fact based on sound biological research and that failure to observe my and Society’s rules would have Dire Consequences including in extremis an introduction to the Paedophile Register.

Status: Negotiated with a some issues on the way

3. The Buggery Conversation

Of course, this all pales into insignificance when faced with explaining buggery to one’s apple-cheeked parent. As a teenager myself I was up late one night watching a biopic about Oscar Wilde. Mother heard the TV on and wandered down to see if I was watching anything good. She managed to walk in at a crucial point in the film where a judge was shouting at Oscar about buggery.

“What is buggery?” she asked.

Well, I was only 17 or 18 and it was still the 1970s, when society had a different approach. That’s my excuse.

“Look it up in the dictionary!” I hissed, going red.

She huffed at me in irritation and stomped into the next room to do so. I heard her riffling through the pages. Then it went a bit quiet and the book was gently replaced. Her tread could be described as “thoughtful” as she climbed the stairs back to bed. And that was that.

Status: Avoided like the very plague, thank goodness.

4. The DNR Conversation

Today I had the DNR conversation. DNR, as the NHS likes to call it, stands for “Do Not Resuscitate.” Like buggery they prefer to avoid using words that are difficult, so they hide behind abbreviations.

Mother is still in hospital and not doing too well. She now has 9 toes and a chest infection they can’t shift. The lack of breathing is the biggest problem as far as the medics are concerned, not unreasonably I feel. However, unless they can bring the infection under control, and she has always been very resistant to anti-biotics, things do not bode well.

So we had that conversation and I agreed that yes, it would not be desirable to go to the greatest lengths to resuscitate if it would leave her in a worse state than before. She and I had discussed it merrily some years ago when it was summer and neither of us believed it would come true.

Status: Negotiated with issues.

5. The Mortality Conversation

As a result of the above I now need to have a further conversation with the Offspringses to prepare them for possible bad news. In a way it’s trickier than the Actual Bad News Conversation. I need to prepare people for the worst but allow for the best and try to manage hopes and fears equally.

Status: TBC

Wishing you happier talks this season.

Namaste.

Cold Logic in the Cold War

http://en.wikipedia.org/wiki/Nuclear_weapon#mediaviewer/File:Nagasakibomb.jpg

It felt like it was time to write a post about peace, there being so little of that precious commodity available, and it being such a Good Thing generally. Sometimes it feels like Peace is the Giant Panda of Life, vanishingly rare, arguably impractical, but nevertheless illogically desirable to keep around.

What particularly sparked me off though was a reminder that it has been a while since the Cold War fizzled out, and that being so, the paranoia and constant gnawing worry of living under the shadow of the Bomb is now a fading memory. Perhaps, I mused, it is something we should remind ourselves about once in a while and try to explain to the young folk who have not experienced it. This is based on the premise that those who do not learn from the past are doomed to repeat it, so bear with me and prepare to be reminded or educated.

Growing up in the Sixties and Seventies had its perks, certainly. The music was exciting, there were real astronauts walking on the Moon, and a sense of excitement in the air. There were downsides too, and the testosterone-fuelled face-off across the Iron Curtain was a major issue. This was not because I was incredibly politically aware; I was a child, and my parents were not interested in politics themselves, so I only learned about such things through watching the Man from Uncle on television and seeing posters for the latest James Bond film in the cinema.

It wasn’t something you talked about particularly. It was just there, all the time, at the back of your mind, like what to get for tea, or how long it was until the weekend. It wasn’t even a thing, any more than air or water or the bus being late.

As the Seventies drew to a close and I inched towards the precipice of adulthood it became obvious that things were awry and the world seemed to be edging towards its own brink. This post is about how much it preyed on our teenage minds. This is how it felt.

We had been told that the other side of the Iron Curtain was full of bad guys. People got shot trying to escape, and their deaths peppered the news every now and then as a kind of constant background noise. Just about the time I read 1984 and started to be a little more independent of the official line, the Ayatollah Khomeini lead the overthrow of the Shah of Persia, and took control of Iran. I didn’t understand the background and had barely heard of Iran before then – O-Level geography tended to focus on learning which country exported the most timber and how ox-bow lakes were formed. After that I gave geography up as a bad job and still struggle to work out the difference between the Solway Firth and the Solent.

However, his installation seemed to cause a hysterical fluster in the media and political circles and it looked like the Nuclear Option was suddenly on the table. For real.

We had read about Armageddon and we didn’t fancy it but we were powerless to stop the button being pushed. However, we were not deterred. We were resourceful and modern young people. A few of us had recently passed driving tests and a couple of us even had access to dodgy old cars. So we laid our plans.

This is where the age gap may show. Those of you in my generation will probably nod at what we intended and understand our reasoning, even if you don’t agree with it. My children and younger folks tend to just look bemused or even slightly appalled when I talk about it.

We set up routes and a telephone tree. We agreed pick up points. Cars were to be kept fuelled up for a drive of about 20-25 miles. When the four minute warning was given, we would rendezvous at the agreed locations and drive like hell into the centre of London.

We weren’t going to sign up for a cause.

We weren’t going to protest.

We were aiming to be at the centre of the bomb fallout, because none of us wanted to survive a nuclear war. We hadn’t seen The War Game because the BBC banned it (despite having commissioned it in the first place) until 1985. Nevertheless we had read about Hiroshima and Nagasaki, and seen pictures.

We intended to die as quickly as possible.

And that, my dears, is what at least one group of teenagers in the late 1970s planned to do in the event of the button being pressed.

War and the means for war mess with your brain. Let’s call it out, shall we?

Namaste.

 

A is for Afterwards

This year I have committed to participating in the Quaker Alphabet Blog Project. I have created a separate page with a little more information too. What it means is that I will try to post a blog for each letter of the alphabet thoughout the year, interpreting this theme as it takes my fancy and reading what others write. I must be a glutton for punishment: I barely managed the Bloggers for Peace monthly post in 2013! Still, EBL is always up for a challenge. Either I can feel a great sense of achievement or have fun beating myself up for failing. What’s not to like?

So today I start with A for Afterwards. Because when you start something I find it pays to think a little about what happens afterwards. I am a project manager. I get paid to do this kind of stuff.

I suppose Afterwards is in my mind because in starting this project I am already thinking about what more I will be committing to doing in 2015. That’s the way the EBL brain works I’m afraid. Never focus on today when there is a hypothetical future to take all my attention and energy away from the moment.

“But EBL! This is supposed to be a Quaker Alphabet!” I hear you cry.

Oh, alright. Let’s get down to it.

One of the things that appealed to me about Quakerism when I came across it in the green of my youth was the lack of going-on about an Afterlife and Heaven and Hell and all kinds of similar dubiousness. I liked very much the focus on practical doing and thinking about how to make our current and shared existence a better one. (And yes, I am aware this is in painful contradiction to the earlier paragraph where I confessed to focusing on the future at the expense of the present. I’m only human you know. It’s an ambition to be more present, rather than an actual, you know, achievement.)

Back to the Quakers though. People are what can make a difference. They make it not only in their contribution to community and the wide world, but also in the odd comment or conversation which can affect other lives. I was a member of a particular Quaker Meeting on the outskirts of London where I met a very special Quaker who once spoke about her understanding of the Afterlife.

Have you had the experience of finding someone who articulates for you what you wish or hope were true. Life after death was not a regular feature of the discussion I had been participating in, so I was not entirely clear what other Quakers thought about it. It was therefore with the most wonderful feeling of relief that I heard this learned and respected person tell me what I felt in my heart to be true.

“I don’t care about what comes after I die,” she said. “I’ll find out if and when it happens. Life is more important.”

This for me summed up what I felt to be important in my faith: life, in the here and now, was the most important thing to think about. Not hypothetical future events of a frankly superstitious and unverifiable nature.

And so, my dears, it is. We live this life together, as many times as fits your personal belief framework, and we can but help each other along the way. There is no After that is not Now.

I wish you all a beautiful year, and thank you for keeping with me on the journey so far.

Namaste.

Santa made me cry

Saturday night in front of the telly and my evening’s viewing was disrupted by a noise outside. I put my glass of wine down carefully and tweaked back the curtain. It was the Lions’ Christmas float, cautiously inching past the cars on the bend in the lane and blaring out carols while people in high-vis vests ran about with buckets to collect money. There were lights and music and cheery greetings, and goodness me, there was Father Christmas, taking time out from his busy schedule to parade through our hamlet. The elves must have everything under control back at base while the wily old gent scouts out the terrain ahead of the Big Night. Mind you, the elves are pretty experienced and the wily old gent has been doing the rounds on floats for as long as I can remember.

Sometimes he sub-contracted.

If you are a big devotee of Father Christmas and write him imploring letters every year, do not read further. It may be distressing. If you are not sure what to do, check with your mum or dad and take their advice.

Meanwhile, all I can tell you is one of the sub-contractors was my own dear papa, and in fact this is why as a child I never believed in Father Christmas (although I do believe, perhaps more foolishly and childishly, in peace on earth and that Christmas tree smell; my eyes are still full of tinsel and fire).

My Dad was the local Rotary Club’s Santa. His costume would be hanging up to dry in the kitchen throughout December and I knew that Dad was all there was (it was more than enough) and other kids were deluded. I didn’t tell anyone though; it would have been unkind.

So he would go out on the float at night, and when I was a little older I was allowed to go too and help with the collections. I always got a good haul because people were sentimental about a small child lisping her way through the spiel about raising money for the poor and elderly of the locality. It also meant I got to go on the annual coach trip to the seaside with the old dears, who spoilt me thoroughly with toffees and boiled sweets.

I even wore the costume on Christmas Day to hand out the presents.

It might help to explain what happened when I saw the float on Saturday if I tell you a bit about my week, or rather my Thursday. Recently the nurses found that my mother’s blood tests were indicating a lack of iron. As she has a good and varied diet the doctor decided she was bleeding internally, although he didn’t know why. She seemed well and was eating and drinking without problems. So we stopped her anti-coagulants, which would be exacerbating any bleed, and waited a bit. Her blood results have been improving steadily so she is no longer bleeding. Excellent news.

Except she is no longer taking her anti-coagulants, which means she is at increased risk of stroke and as she has vascular dementia, at increased risk of more vascular incidents which will further melt her brain.

The doctor and I talked it all through on Thursday. The bleed may have been a temporary problem highlighted by the anti-coagulants thinning her blood; it may be caused by some disease of the bowel; or it may be bowel cancer.  To find out would require difficult, uncomfortable and potentially inconclusive investigations, which she would find inexplicable and terrifying because she can’t understand what is going on. Even if they found the cause, which is not guaranteed, we would then be faced with a decision around whether she is strong enough to take any treatment, such as radiotherapy, chemotherapy or surgery. She isn’t, and even if she were, the trauma could be either damaging or fatal by stressing her too far.

So I decided we would let her alone. We’ll restart the anti-coagulants when her blood tests indicate she is back to normal, hoping she doesn’t have a stroke or vascular incident in the meantime (it should only be a couple of weeks). If her blood tests then get worse again, we will have to decide whether to risk stopping them or not.

So it had been a stressful Thursday.

There I was 48 hours later looking at a Christmas float pass by and waving to Santa, who waved back and boomed out a “Merry Christmas!” and I fell apart at the gate, in the dark and cold, where no one could see.

Because last year my mother saw the float and we remembered how Dad used to be Santa. She cannot now.

Because I wanted my dad here to help me. He cannot now.

Because whatever the blood tests tell us, nothing will be good or beautiful or gentle. Yet I must choose.

So I cried silent self-pity in the dark and cold where no one could see, then wiped my eyes and went back into the warm house and sat with Sigoth by the fire.

Because I have joy as well as sadness.

On Joy & Sorrow

Then a woman said, “Speak to us of Joy and Sorrow.”
And he answered:
Your joy is your sorrow unmasked.
And the selfsame well from which your laughter rises was oftentimes filled with your tears.
And how else can it be?
The deeper that sorrow carves into your being, the more joy you can contain.
Is not the cup that hold your wine the very cup that was burned in the potter’s oven?
And is not the lute that soothes your spirit, the very wood that was hollowed with knives?
When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy.
When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.
Some of you say, “Joy is greater than sorrow,” and others say, “Nay, sorrow is the greater.”
But I say unto you, they are inseparable.
Together they come, and when one sits alone with you at your board, remember that the other is asleep upon your bed.
Verily you are suspended like scales between your sorrow and your joy.
Only when you are empty are you at standstill and balanced.
When the treasure-keeper lifts you to weigh his gold and his silver, needs must your joy or your sorrow rise or fall.

Namaste.

How long we live, how long we take to die

One of my hobbies is researching my family tree. I’ve been at it since I first saw some old sepia photos of forebears when I was a teenager and my Dad was looking for something in a cluttered bureau. For once he was willing to talk about his family history and I scribbled names on the back with a pencil in my flowery teen-girl handwriting.

My family came alive to me. The great-uncles who died in the Somme suddenly became faces of real (albeit antique) people, gazing solemnly into a camera. My own grandmother, wrinkled, toothless, crippled by arthritis, was a beautiful young woman in a lacy Victorian blouse. Her fiancée looked like a film star. My very serious uncle was a tiny baby kicking his feet as he lay on a rug. My Dad’s sister who died when she was seven, and whom my grandmother occasionally mistook me for, stood clutching a teenaged Great Aunt Lettie’s knee and looked like just like me.

In this way my family still lives on. I never really knew them. They are my inherited ghosts. But from then Armistice Day did have meaning.

At the going down of the sun and in the morning,

We will remember them

So life goes on, and we all carry our ghosts with us, some more than others, some gladly, some sadly. Yet still they matter.

My dad died very suddenly on 26 September 1992. This week was the 21^st anniversary of his death and my mother missed it more utterly than ever before. Even last year she was vaguely aware of it, and I was able to remind her so we had a few moments together remembering that kind and gentle man before her melted brain turned back to the weather as a topic of conversation. Dementia robs the person and their family of memories, including memories of those no longer with us.  In this way it exterminates the sufferer and their family line. There is a Maori concept of whakapapa which relates to the identity of a person as part of a cultural heritage, and I feel that remembering our predecessors is important to us in a similar way.

I remember my Dad. I have stories about him, some buried in this very blog, which I tell my children. He died the weekend I went home to visit and tell him about his latest grandchild, due to be born the following Spring, He was so happy with the news, but still he died a few hours later, after he got home from work and before my mother and I got back from a concert. It was unexpected.

Twenty one years is a long time. The grandchild is now at university. His wife is fading slowly and excruciatingly.  His only daughter is still misses him on a daily basis. It feels like he is in the next room, or about to phone. We were very close, and in a sense still are. He has been dying for twenty one years, in a sense, and will not completely pass away until I, and possibly the children, can no longer remember him.

What will become of more modern generations? How long will my blog be archived after I am no longer around updating it? I’ll be a wispy little ghost in the machineries of the Web. Every now and then my shade will whisper to you…

“Namaste.”

B4Peace: Music and the brain

Each month I try to contribute to the Bloggers for Peace topic, and this month we are asked to think about music.

Let me start with the death of a brain.

My mother has dementia. I have mentioned this before so some of you will be nodding along at this point, thinking, “Oh yes, that’s right, EBL’s mother is the one with dementia” and so on.

To be fair she is not as far gone yet as she will be, but further along than anyone would really like. This means she knows roughly where she is, who we are (although on her bad days it takes a moment or two), and how to do some knitting. She likes to look at the pictures in the newspaper and read out the headlines to whoever is there. She likes to read books, although several at a time because she can’t really follow the story and forgets which book she was reading last. She likes to have the TV on so there is light and movement in the room, and to have the light on the electric fire on, so it looks like coals are burning in a friendly, comforting way, even in the heat wave we have just had.

The other thing she likes to do I have also mentioned before; she likes to sing. She sings to herself throughout the day, usually “Que sera, sera” over and over. It was a favourite song of hers when I was little. When she is singing it I know she is feeling OK.

It is a truth universally acknowledged, I am led to understand, that a dementia sufferer who becomes distressed can be calmed and soothed by music. There is a growing body of research to indicate that music therapy may be helpful in overcoming the loss of language production and comprehension in advancing dementia. Google it – there are lots of studies out there.

According to one researcher:

‘We know that the auditory system of the brain is the first to fully function at 16 weeks, which means that you are musically receptive long before anything else. So it’s a case of first in, last out when it comes to a dementia-type breakdown of memory.’

Music is with us throughout our lives and plays an important role in maintaining our mental health and well-being. It can reach the lizard brain, by-passing the logical bits that get in the way of feeling and experiencing the world. We hear a tune and we are absorbed, sometimes in a memory, sometimes in the joy of the moment.

The other week I watched the BBC Prom with the Scottish Symphony Orchestra playing Beethoven’s 5^th Symphony as well as his Coriolan Overture.

I like a bit of Prom on a Friday evening to finish off the week and settle down for the weekend.  I like Beethoven, in part because I grew up listening to a lot of it. My father loved Beethoven and played him frequently. I could identify the Symphonies before I knew who the Beatles were. I liked Beethoven because he was deaf but still wrote incredible symphonies.

My dad would have loved the modern world. He was a geek of the first water. He would have loved computers and digital TV and streaming radio and downloadable music and digital cameras and Netflix and Skype. He would have loved the Proms on BBC4 on Friday evening. We would have sat and watched them together in some kind of cosy family cocoon. We always watched Last Night of the Proms; it was the only time I was allowed to stay up late when I was little, and we both conducted furiously to the Sea Shanties and Jerusalem and Land of Hope and Glory. It was better than Eurovision.

So as I sat and watched the Prom the other week I felt a great sadness because there was Beethoven’s music and I wanted to turn to dad and ask what he thought of this conductor, Runnicles. Dad was a big fan of von Karajan until he discovered Barenboim; he was always open to new versions.

I felt such a sense of loss as I realised I couldn’t have that conversation, yet the music made my dad feel so close to me, twenty years after he died. I suspect he may have retained his allegiance to Barenboim, but he would have enjoyed the performance nonetheless, especially the Coriolan Overture.

Thinking about dad brought home to me why music is such a comfort for my mother. That effect of reaching into your heart and soul means it is connecting to pretty much the only thing left when dementia has taken away the superficial veneer of speech and rationality. In this way it brings her peace.

May music bring peace to you and those you love, wherever they find themselves.

Other blogs on music and peace include:

http://everydaygurus.com/2013/08/01/monthly-peace-challenge-one-good-thing-about-music/

http://bloggers4peace.wordpress.com/

http://mylittlespacebook.wordpress.com/2013/08/14/a-joyful-noise/

http://sarahneeve.wordpress.com/2013/08/13/august-b4peace-i-dedicate-to-my-dad/

http://grandmalin.wordpress.com/2013/08/03/august-post-for-peace/

http://bloggers4peace.wordpress.com/2013/02/11/kozo-cheri-asks-that-you/

Namaste.

Bloggers for Peace: Better to have loved and lost…

Can you have a relationship with someone you have never met? Can you have a relationship with a favourite author? Certainly in the Age of Celebrity there appear to be many people who think they have a relationship with characters from TV programmes or films, or with actors, whom they never can meet.

I am fairly confident in assuming that many of you are avid readers. Certainly I believe it to be so when you are such great writers. It does not follow that if I read I can also write; however, I am certain that if you write well, you must read broadly too.  So regardless of any pretensions to writing well, I will admit I do read broadly and will further assume that this is true for you as well.

I love certain authors. I never interact with them directly – well, almost never. Recently I felt very daring and left a message on a top author’s blog expressing gratitude for his books and letting him know how much they had meant to me over the very many years I had been reading him, since the 1984 in fact.

Do you have a favourite genre? I have probably said before that I am a big science fiction fan. I may be repeating myself (I’m too lazy to check) but one of the reasons I fell into a long term relationship with a number of science fiction authors, in my devil-may-care, the-more-the-merrier, I-read-around-a-bit way, was that I read an essay/article by someone erudite. It may have been Brian Aldiss, I’m not sure, but what he said was that the reason science fiction was an interesting, even essential, genre was that it gave you space to explore really big and difficult questions in new ways without the baggage. You could look at relationships and society and history and science and politics and elitism and autocrats and racism and human rights and, when you get right down to it, what it means to be a human being, with freedom and honesty and integrity. If you wanted. He suggested that when you were writing in the real world, you were constrained by real world limitations and expectations and the status quo. Actually he might not have said any of that, but it’s what I took away from whatever it was I read.

Science fiction was exciting at an intellectual level, not just a boys’-toys (excuse me, chaps), Flash Gordon, shoot-the-aliens kind of way. It had a weight and heft that mattered. Plus I learned all my science from Star Trek (and my history from Jean Plaidy but that’s another story, quite literally).

Within the honoured throng of writers there is one to whom I was devoted, because he wrote about really positive possibilities. He confronted difficulties and he didn’t fall into some kind of dystopian nightmare, framed by Ridley Scott in rain and darkness (yes, I do mean Bladerunner – as if Philip K Dick wasn’t depressing enough in print). He saw people overcoming our current idiocies and taking science and prodding serious buttock with it until we had a society worth living in. There was also pain and despair and very dark humour, and exciting spaceship fights begging to be screened at an IMAX, and artificial intelligence that was cool and clever and actually quite human at the same time.

Obviously a humble purchaser of his books such as myself would never dream of crossing his shadow. He was too clever and cool and brilliant for the likes of me. I bought everything he published, science fiction or not, and it was all amazing (well, maybe one dud if I am truthful).

On 3^rd April Iain Banks announced that he was unwell; that in fact he had been diagnosed with late stage gall bladder cancer.  I signed his message board to express my sorrow and appreciation.

On Sunday, 9^th June, he died.

Can we have relationships with people we have never met. I’m not sure. Do we need reciprocity? Does his writing books and my consuming books represent more than symbiosis? And is symbiosis a relationship of a kind?

I don’t know, but I feel a loss, and am sad to think I will never read new books by him. There are fantastic new writers to meet yet, but each writer is unique and so cannot be replaced. Iain Banks’ warmth and humour and challenge will be hard to follow. He railed against stupidity and promoted compassion. He helped me think about what it means to be human. He wrote many wonderful things, but in summary they all come to this:

“Fuck every cause that ends in murder and children crying.”
― Iain Banks, Against a Dark Background

Meanwhile, read other blogs participating in this month’s Bloggers for Peace Challenge:

http://everydaygurus.com/2013/05/28/monthly-peace-challenge-peace-at-home/

http://mylittlespacebook.wordpress.com/2013/06/07/what-do-duck-fights-have-to-do-with-peace/

http://cpgutierrez.wordpress.com/2013/06/11/accepting-the-challenge/#comment-2568

http://retiredruth.wordpress.com/2013/06/06/monthly-peace-challenge/

http://ponderingspawned.com/2013/06/11/sing-sweet-nightingale/

http://bloggers4peace.wordpress.com/2013/02/11/kozo-cheri-asks-that-you/

Namaste.

Aunties, aunties everywhere

I seem to be in a real wallow of nostalgia at the moment, as the last few posts demonstrate. Never mind, it was part of the reason I started this blog anyway, to note down some memories before I lost the will to tell them or the means to share them. Nowadays I am assuming the old folks’ home will have Internet access as standard, but who knows?

The other day I wrote about my memories of Auntie Brown and so unsurprisingly she has been uppermost in my thoughts. She kept on writing to my mother for years after she moved to the Land of the Long White Cloud. She was certainly still writing after my mother moved up north to be near us, back in 2000, and must have been well into her eighties. At some point she may have died, but I don’t know because my mother will not have remembered to tell me (if she knew, but I think the family would have been in touch). My mother was already getting more forgetful than I realised, even in those days.

I felt a bit sad about that and thought about my other aunties. What you need to know at this point is that the term “auntie” is more an honorific than a genealogical title. These women were simply my mother’s friends and neighbours. There were associated uncles but in some cases I don’t think I even knew their names. They did not feature in my young life because they were out winning bread, while we women and children lived in a separate, parallel world.

Auntie Brown was also called by her first name sometimes, Auntie May. However, the woman on the other side of our house was never an auntie. She was a Missus: the subtle clue that we did not get on. She was often very nice but liked to show off all the time, and as we were not very well off it was usually at our expense. On the rare occasion we were allowed into her house, she would literally be plumping up the cushions in the sofa as soon as we stood to leave. It was unnerving.

The next few paragraphs are probably for the girls. Chaps, you may wish to skip them. They involve lady stuff. It’s entirely up to you. To skip, look for **.

One time my mother and I went to see her because they had just had a new boiler installed to provide central heating. This was pretty uncommon, although we did have a coal-fired boiler in our house which had been a major bonus in the winter of 1962 but was pretty inadequate to the task of heating radiators. Nevertheless there was always hot water. Anyway, Mrs Next-Door proudly showed off the clean new boiler, all white and shiny and not coal-dusty at all.

“So how do you burn rubbish?” I asked, in my innocent child fashion.

By rubbish I was not really sure what I meant but I knew we did sometimes burn additional items on the boiler. We had no open fires in the house, so it was a handy means of waste disposal. What I didn’t understand, although later I learned and was very pleased, was that mostly the rubbish consisted of sanitary items. Let me tell you, girlfriends, when I went to university I had no idea how to dispose of such items as there was no incinerator in the residence. I soon got over the rather quaint prejudice the teachers at school had instilled about ladies not using tampons. Honestly, when I left home it was like I moved centuries as well as geographies!

Mrs Next-Door cottoned on to what I was talking about and she and my mother went red. I soon got a nice drink of orange squash and a biscuit to shut me up. So she wasn’t all bad.

** Welcome back fellas. You only missed some menstruation chat.

Anyway, aunties.

Realising that I have probably missed Auntie Brown’s demise, I quickly catalogued the other key aunties to make sure I knew their current status. This brought about the realisation that I was blessed with aunties even though my actual family was pretty small. I also realised that mostly they are now dead.

Auntie Peggy was a marvellous, hearty woman who always complained about her health, I learned the word “hypochondriac” before I was 10. It eventually turned out she was an undiagnosed coeliac. She died of cancer. She was bright and beautiful and always talked to me like I was a human being. She didn’t have children but she had a real niece she doted on and she spoiled me too. She had a huge laugh and dressed like a film star, usually in cherry reds or something bold. She spent her life helping other people, caring for elderly neighbours, growing and giving away vegetables on an allotment, volunteering with an old folks’ day centre. She was always honest and cheerful, even when the cancer was over-whelming her.

Auntie Sheila is living in the West Country now; we wrote to each other at Christmas. She and my mother met in maternity hospital and she had a son my age, and later a daughter. I loved playing with one or the other of them but as they always fought I couldn’t play with both at once. She was a kind, intelligent, creative woman who did the flower arrangements for my wedding. I spent a lot of time at her house in the holidays, although sometimes we had to be very quiet because Uncle Ian (there was an uncle here, and he was great to me but strict with his kids) was asleep after night shift as a policeman.

Auntie Marjorie was like a person from an old novel, like in an Agatha Christie story, a real lady in the old-fashioned, quiet English way (only not murdered or murdering of course). There was Uncle Malcolm too but I didn’t see very much of him, although he had a cute little white moustache and dressed like a proper gent. I don’t think he was, it was just their era, and everything was smart and tidy and lovely. The house was chintzy and had very thick carpets and heavy oak doors. She taught me how to make toad in the hole. After the first Offspring was born we went to visit, and I was shocked to discover Auntie Marjorie had had two sons; they both contracted measles and died when they were 5 and 3, the elder catching it at school and infecting the younger.

Auntie Betty, I fear, was an exception in the pantheon of Good Aunts. Whenever someone uses the word “waspish” I think of her. She lived on her own with her cats for company. The cats scratched, inevitably. One was Siamese. When she came to our house she was incredibly nosy; she went into my bedroom and looked in the drawers and rearranged things. I was livid, of course, and even my mother ticked her off. Dad and I would hide when she was coming, and one weekend I went to stay over at a friend’s to avoid her. We spent the morning making each other up with glitter and stars and all kinds of glam rock goodness. Then I realised I had forgotten something and had to pop home to pick it up. Auntie Betty nearly fell off her chair and shrieked when she saw me, and my parents nearly died laughing at her. The poor old dear, she was sad and lonely, but she didn’t help herself. My mother eventually didn’t let her know her new address because she couldn’t stand the complaining. I’m sad Auntie Betty ended up that way really.

Big Auntie Kath was another loud, funny, extrovert auntie, like Auntie Peggy. She also died of cancer, and it’s hard to tell you more about her because she was a force of nature, and how do you describe that? She was lively and happy and kind and boomed into the house when visiting. She did exciting things like going abroad for holiday or colouring her hair.

Little Auntie Cath was a school teacher and the sister of my mother’s best friend, after whom I am named. She used to test me on spellings and times tables, but she also took us to the zoo and the seaside in her terrifying jumpy mini. “I put a kangaroo in the tank!” she would yell cheerfully as we lurched along the road and my mother sat in the front seat white-faced and gripping her handbag in terror. I thought it was hilarious, of course.

Having two auntie K/Caths was educational in its own right. I learned two different spellings, which was one way to tell them apart. Fortunately they were also physically inches apart in height, hence the nicknames.

There were also all the aunties who were the mothers of my friends: Auntie Meg, who used to tell my friend to behave more like me but let us watch Pogle’s Wood, which my mother thought was too scary; Auntie Hazel, who took me to church to save my soul and wouldn’t let us ride bikes on Sunday, but also took me out all the time and gave me tea and meant well; Auntie Grace, who gave me pocket money to buy sweets and let us ride tea trays down the stairs for fun.

There were very few men involved in our children’s world. Reading Kozo’s post the other day also reminded me that my aunties were wonderful, for the most part, but that I missed out on uncles along the way. Perhaps they too missed out on us.

So here’s to uncles Dick, John, Bill, Ian, Malcolm, Pat and the rest: thanks for the go-carts and kites and lifts to and from parties. Thanks for the bread you won, the days out we shared, the fireworks and bonfires and the footballs and punctures repaired. You were an important part of our lives, but we didn’t see it clearly enough then.

Namaste.