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.

Snow family

While other things are going on, here is something I made earlier.

The Offspringses were colour-coded as children so they all knew whose was which flannel, toothbrush, sunhat etc. Here we all are as snowpersons. Sigoth is a huge Dr Who fan so he got the cool scarf because I didn’t knit a fez and bow-tie this time around. Maybe next year…because bow-ties are cool. As are fezzes.

Happy holidays!

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.

Funny old world

It’s a funny old world

What I mean to say, my dears, is that I am somewhat bemused by the world and its quirky little challenges.

Of course the teacher at the weekly Buddhist meditation class I attend would remind me that it is not the world, of course, but my mind interpreting it. I obviously choose to live in a state of confusion. I’m not sure what that tells you about me, but there it is. Buddhists have been around a long time so I’m sure they know what they are talking about.

The particular bemusement of the moment relates to the fact that as my life improves I seem to be getting more and more stressed. Funny indeed, EBL! You funny old girl.

It goes like this.

I am not currently depressed. Of itself, this is highly unusual and represents a much-desired goal.  Who would want to be depressed? But in a way I am not sure what is left of me when you take that old black dog away.

Over the busy summer the family has celebrated a number of achievements. All of the Offspringses now have permanent jobs – at least, as permanent as any job can be. They all have found places to live, which makes us all happy as we generally are of the opinion that living at home with one’s parents is not the way to go. We all need to live our own lives. And we enjoy time together as a treat.

My mother has deteriorated, it is true, but she moved into residential care. And once over the shock has been enjoying herself immensely. Recently she has had to go into hospital to have her toe amputated due to diabetes-related lack of circulation. This is not good news, of course, but she is in that happy state of mind where it is not distressing her, because she doesn’t know what is going on. She does like the fact that she is fussed and coddled and made many cups of tea. The NHS runs on tea, naturally, and it is what makes the system the best in the world: tea, free at the point of delivery.

I am struggling to cope with all the changes. A house to myself and Sigoth, no need to be home to feed other people; space for a study after years of balancing paperwork on laps and coffee tables and the floor; space for my burgeoning stash of wool; free time to go out to see friends or get involved in new activities; a lie in on Saturday morning. All good of course, but all change. And as we know, all change is loss, even change for the better.

I am also facing the loss of my mother. While she is doing quite well, any operation is risky and she is really quite frail nowadays. She may not be the mother I knew as a child, but nevertheless she is my mother, for better or worse, in sickness or in health.

So I am stressed.

I am a funny old thing. So much wealth can cause me so much confusion.

If all change is loss, as I think it is, what are the changes that cause you the most bepuzzlement? How do you make sense of it all? Really, it would help me to know!

Meanwhile I’ll carry on meditating and perhaps if the Buddhist teacher says it often enough, I might finally understand how my mind deludes me.

Namaste.

Letting go

My dears, this is a sequel to my post about my mother’s move to the care home. She’s doing well, by the way, and much perkier than before. She did have a small stroke due to the pressure, but has since been doing splendidly, although I am not sure she is quite aware of who I am all the time.

Since her departure, and in between other trips to various parts of the country, I have been trying to do paperwork related to her new status. It’s actually pretty much the same as if she had died, while she is in fact living happily just down the road.

So – I have been battling in no particular order with British Telecom, the electoral register, Social Services financial assessments, the hairdresser, the Department for Works and Pensions, the Lifeline provider, GPs and pharmacies, her friend in London, domiciliary care, carer’s support, the library and the chiropodist. I was also advised to set up a funeral plan for her, as she didn’t have one. In a couple of weeks I will be meeting a terribly earnest woman to talk about options for caskets.

This weekend I have been trying to clear out the annexe where she lived, deciding what to keep, what to bin and what to send to the charity shop. Most of it has gone into boxes labelled “charity shop.”

A few years ago my mother asked me what I would do with her beloved belongings when she died, and I told her the charity shops would receive most if not all of it. She was appalled.

“But they were gifts!” she wailed.

“Not to me,” I said.

“From my friends…”

“Not my friends.”

“They mean so much to me…”

“I don’t know who gave them to you, when or why. They don’t mean anything to me. They might as well go to someone who will enjoy them because I think they are awful.”

I was skirting around my true feelings of course and may possibly not have said all that out loud. I probably did though. I don’t lie to my mother.

She tried to persuade me to keep them and I stoutly refused. Too much dusting for one thing, and too much searing pain in the eyeballs for another. I am not fond of those kinds of objects.

So here I am, putting things in boxes and reminding myself that she won’t be coming home. You don’t get better from dementia. She really won’t wake up tomorrow and remember who she is. It’s not Dallas.

We took four large bin bags of clothes and shoes to the charity shop yesterday. My mother loved her clothes and shoes. I reckon there’s another two or three bags to go, and that’s not counting the generously packed suitcase I took to the home, nor the pile of laundry that I will take to the home tomorrow to add to it.

I didn’t know how I would take this clearing out. I thought I would get upset. I thought I would get overwhelmed. I didn’t. I am tired, but it’s quite hard work and we have been at it all day.

I feel I’m in a kind of limbo. I can’t mourn for her because she is happily ensconced in front of a television less than three miles away. I don’t feel guilty, amazingly enough, because it’s easier to do it now than it would be after she died. I just don’t really feel anything about it at all, except weariness.

So that’s all good. I mean, there is no wailing or gnashing of teeth. There is no trauma, just a gentle drifting and waiting for the end to come. Each time the phone rings I am nervous, in case its The Call, but otherwise peaceful.

I am thankful she is well cared for and the staff seem kind and patient. She is so happy there it is clearly a success, and that is not a poor way to go.

I worried about what could go wrong, but this time it didn’t.

May you be as lucky as we have been, and find peace through difficult times.

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

Spring thoughts

Don’t you love Spring? Well, perhaps you don’t but I quite like it, although Autumn is my season of choice. I like the in-between seasons, which are full of possibility. Summer and winter seem so fixed in their ways and I enjoy the bracing winds of change and blue horizons. They offer potential.

Anyway, Spring. Time for some more positive reflections on life, the universe and everything after recent dark and ponderous posts. Spring, the season of cute little baa-lambs, poetic daffodils and inexplicable urges to wash the windows and vacuum the loft. There are lots of birds flapping about with tree trunks in their beaks as they prepare nests for their hard-wrapped offspring. I imagine finding an endless source of nourishment for hungry beaks after the bairns have hatched is a glide in the park after all the construction activity.

The miserable side of my soul mutters in a corner about hay fever and sunburn in my imminent future, but I have her under control. No sunburn for me as I go out very little due to working, and I live in England which doesn’t get enough sun to be dangerous. Plus my hay fever seems to have lessened over recent years so I appear to have grown out of it. Take that, roasting rays and pesky pollen! Who knew working long hours and getting old could be so good?

Another thing to look forward to is the Chocolate Festival. The family are all due home for the weekend, so I am planning menus. The rhubarb is growing nicely in the garden so crumble is on the list. We like our rhubarb crumble in EBL Towers, with thick, sweet custard, the kind you eat with a knife and fork.

The final Spring activity at EBL Towers is Birthday Overload. Four birthdays in 24 days, my dears, put a bit of a strain on the celebratory muscles. With ChocoFest inevitably added into the mix we are the very definition of Party Animals; at least, the kind of Party Animals who might participate in the Mad Hatter’s Tea Party and end up sleeping in the tea pot.

My father’s birthday was in June, near solstice. He used to say he liked having his birthday then because it was half-way to Christmas so spread the presents out nicely. I, on the other hand, like my April birthday because it was half-way through the school year and didn’t get spoiled by exams or people being away on holiday with Granny in Wales. In those days a week with Granny in Wales was as good as a fortnight in Turkey for today’s young people, and we were grateful for it. My granny lived with us, so a week in her sitting room was the best I got, or a day trip to granddad’s in Croydon.

I didn’t have birthday parties. We tried once and it was a terrible failure because my mother had absolutely no idea how to run one. We had a cake for tea but she didn’t know any games apart from gin rummy and sent us into the garden where it rained on us. After that, I moved on to getting infected with diseases at the local cinema: three birthdays in a row produced measles (Snow White), mumps (Pinocchio) and chicken pox (Dumbo). I am not a Disney fan and now you know why. He ruined my birthdays. Later birthdays were day trips with a best friend, usually to London or Kew Gardens. Even today I associate my birthday with hiding in a den under rhododendrons and pretending we were fighting pirates or cowboys or bank robbers, I forget which. It hardly matters: we were the goodies and we couldn’t lose because of the narrative imperative.

Nowadays I like the end of short, dark days and appreciate the onset of lighter evenings. I don’t mind dark nights. In many ways I quite enjoy them. Again they are more mysterious and secretive, and being out in them or at home feels quite secure and comforting. It’s just that going to work in the dark and coming home in the dark wears thin after a few months. When the first good days in Spring roll in, there’s a sense of desperation in the air as the population surges outside and exposes their pasty, goose-pimpled, northern flesh to the vitamin D enriched goodness of our local star. Even I, encased in layers of crumpled clothing, turn my face up to the sky and soak up the beams of life-enhancing light. Then I sneeze and hide indoors.

We know Spring is really here now because Sigoth is cutting the grass between showers and we are thinking about whether to risk hanging the laundry out. The bluebells are massing to put in an appearance, annoyed that the grape hyacinths have beaten them to it. There is forsythia ablaze in half the gardens along the street, and our lilac tree is shuddering under the weight of orgies of sparrows, getting jiggy in the twiggy.

I still prefer Autumn but rumbustious old Spring is pretty nice. Feel like sharing some seasonal thoughts? Get on, then, I’m looking forward to hearing from you.

Namaste.

 

 

B4Peace: Family

I am continuing to participate in the monthly Bloggers for Peace series which is the brain child of the the lovely Kozo. I say “lovely”, but he’s pushing his luck this month, because Kozo has asked for posts about family. To be precise, making peace with family. You know, the people who messed you up, broke your heart or mind or body, who know the buttons to press or the words to use.

This month, I want you to focus on your family. Is there anyone you don’t fully embrace in your family? Do you feel resentment, shame, or anger towards someone blood-related?

Yep, I went there. Let’s deal with it. This months challenge is to make peace in yourself with someone close to you.

http://everydaygurus.com/2014/02/03/monthly-peace-challenge-we-are-family/

Well now.

I have been thinking about this and struggling to know what to say.

My family is not particularly traumatic. I am blessed. I had a reasonably happy childhood. If anything, my family is in fact more notable by its lacks. It is not large. In general it is not fond or close or very emotional. (To be clear, when I say “family” here in this post I am referring to my ancestry, as it were, and not to Sigoth or the Offspringses.)

I am an only child. My mother was an only child. My father had brothers (living) and a sister (died as a child). I grew up knowing I was loved in general. We didn’t see many relatives except aunt, uncle and cousin (also an only child). Half the family was abroad so we hardly ever saw them at all. I was the only girl and younger than my English cousin by more than 12 years. We had nothing in common.

We never talked about family. I was intrigued to know more about the shadowy relations occasionally mentioned, but then hidden again. Pretty much anything I heard was about family arguments and disagreements. Generally speaking my family has a poor track record at living peacefully. Perhaps it’s not surprising that they didn’t keep in touch with one another. They were too tired and worn and poor.

I remember very clearly, when I complained about having to visit my aunt and uncle, what dad told me: that it didn’t matter if you liked your family or not. You had to do your duty.

My mother’s view was different and more unsettling to my child self. She always said that because her parents had argued so much she would never inflict that on me. If she and dad didn’t get along, she would leave. She didn’t believe in staying together for the sake of the children.

It’s not a loving environment, is it? We didn’t have rows or thrown china or slammed doors. That was too dangerous. We just had duty and the possibility of leaving or being left.

Once I was older I had a chance to start doing family tree research. My own family wouldn’t tell me much about the photos we did have, but the documents have told some tales and sometimes I have teased out more from my mother in years gone by, none of it reliable but sometimes indicative.

My maternal grandfather lost his mother when he was a toddler; she died giving birth to a brother who also died. Granddad was sent away to live with his maternal grandfather until he was about five. He wasn’t wanted there. His grandfather wouldn’t speak to him; I’m assuming the reminder of his dead daughter was unwelcome. When he came home there was a stepmother and things didn’t go well. On censuses he is variously with his grandfather, his aunt and then on his own. He left home when he was seventeen and went to London. His own marriage, as my mother explained, was disastrous. My mother not only had to survive the Blitz in the East End but then had her parents break up and live separately until her mother died in her arms a few days before her 15^th birthday. She moved back with her father and again a disastrous stepmother was introduced. She left home when she met my father and my grandmother found her a place to live with a neighbour.

My father had a better time of it, but his own father was brought up by aunts because his mother had apparently died in childbirth too and his own father was unable to cope with caring for a child. However, it turns out he was actually illegitimate, and this was just the kind cover story he was told. His mother moved away from the area and later did marry but died in her 40s from cancer. It is not clear whether she kept in touch with her sisters and son, but possibly she was disowned. His father was seemingly unaware of his son and is known to have lived a life regretting that he had no children (he later married but the couple remained childless).

My grandmother had a large family, being one of 12 children, but was scarred by the loss of brothers in Somme trenches and later her little girl.

These are common tragedies to family historians, but it seems to me that they reflect down the generations. The thoughtlessness and hardness of lives lived in poverty and grief affect the fortunes of unborn children. Looking at my grandparents, only one of them had anything like a reasonable family life and that was one of constant struggle, fear of bailiffs and desperate projects to earn enough to feed the children. My grandmother made jam and sold it to earn a little extra money because her husband’s wage was low. She told me when I was little and had to stand on a chair to help stir the fruit as it bubbled on the cooker, that she used to sell her jam. I was very proud to think she made such good jam. Now I am proud that she was so resourceful.

The other day I found some new Poor Law Removal records for a previous generation and it turns out that ancestor Daniel abandoned his wife Charlotte and their surviving children in the 1850s. They were back together for the 1861 census, but under what duress I dread to think. In 1855 when Charlotte was forced to apply for parish relief at the workhouse she was living in Digby Walk, as described below in a report from 1848:

 DIGBY WALK, GLOBE ROAD, 19.- In fit character with the distressing and degrading scene last visited, is this alley, which is in a state of the most beastly dirt. More than half of this horrid alley is covered with a stagnant pool of most offensive and filthy slime, and mud, in some places, to the depth of a foot. Some of the houses, which abut on it, are unfinished, but the yards of the older houses present a character little dissimilar to the stagnant gutter, or ditch itself. The refuse from a pig-stye drains into this gutter, and adds pungency to its offensiveness. This place is private property, and the landlord of the new houses has built a cesspool, into which to drain his houses, but he will not permit the other houses in the alley to drain into this cesspool, unless the parish pay to him 1l., a sum which it will not pay. Verily, one case of typhus would cost much more than the small sum asked to keep this place clean.

http://www.victorianlondon.org/publications/sanitary-1.htm

I don’t know why they ended up in this situation. Daniel had a good trade so perhaps he was going through a rough patch, or else he was a gambler or drunkard or promiscuous or violent. Perhaps she left him or maybe they agreed mutually it was for the best. Maybe they thought they were doing the right thing for their fragile family. Nevertheless, such experiences would have been traumatic for the children, one of whom was my great-great-grandmother. She also married a bit of a waster, and her own daughter, my great-grandmother was orphaned and in a workhouse at the age of 11.

How can families live joyful, loving, peace-fulfilling lives with these scars and tragedies? We are losing the generation that was broken by the trenches of France, and whose silence about those experiences is understandable but also permits the perpetuation of the old lie, as Wilfred Owen calls it, dulce et decorum est pro patria mori.

My father was in Germany in 1945 and 1946 but didn’t talk much about it either except for brief glimpses of camaraderie in the face of despair, and the discovery that some Germans at least were good people who were betrayed. This was not a popular opinion to hold at that time but he was a kind man and only judged people by their actions. He fell in love with a German girl but had to leave her because his mother would not accept her (not surprising but a little disappointing, I’ll admit). He did his duty then and continued for the rest of his life to do so.

What I have found is that for every generation where I uncover some sad or disagreeable story, there is inevitably a reason (although rarely an excuse) to explain the behaviour. This is how we perpetrate the errors of our forebears and continue to suffer.

Despite all this I have some hope. Darkness cannot abide with light; truth told leaves nowhere for lies to hide. With honesty comes the possibility of forgiveness and a fresh start.

I wish I had recognised this sooner, and avoided mistakes in my own parenting; but I did recognise some patterns that I did not want to repeat and I hope I managed to avoid them or at least reduce the strength of them. Worrying about money is one feature of my family. The only time my dad lost his temper with me was when I dropped a bottle of milk. “Do you how much milk costs?” he shouted. So although I worry about money and although we had to be frugal when the Offsrpingses were smaller, I don’t think I have ever shouted at them for such childish mistakes. I have shouted. Just not for that.

Let’s sit down with Philip Larkin for a moment, because that’s a very good place to sit. His conclusion is not for me but he sums up the tragedy of inherited scars.

This Be The Verse

They fuck you up, your mum and dad.

    They may not mean to, but they do.

They fill you with the faults they had

    And add some extra, just for you.

But they were fucked up in their turn

    By fools in old-style hats and coats,

Who half the time were soppy-stern

    And half at one another’s throats.

Man hands on misery to man.

    It deepens like a coastal shelf.

Get out as early as you can,

    And don’t have any kids yourself.

http://www.poetryfoundation.org/poem/178055

Very few people are actually evil although they may choose to commit evil acts. Something has shaped them. Be glad, and even humbled, if it has not shaped you too. We can make peace if we want to. Recognising the roots of fear and sadness and pain is the first step to moving past those things to a better place. It is not easy. It is merely possible.

May you rise above your suffering and choose peace and love. I will do my best to keep up with you and we will try to make a better, more peaceful, world, here and now and every day.

The light in me salutes the light in you

Namaste

Other posts this month include:

http://everydaygurus.com/2014/02/03/monthly-peace-challenge-we-are-family/

http://appletonavenue.wordpress.com/2013/07/17/bad-dreams/

http://brainsweets1.wordpress.com/2014/02/04/dearest-daughter/