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.

First Christmas

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.

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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

When you know it’s time to go.

My dears, I was pointed to this blog recently and wanted to share it with you. I had to give up as School Governor last year, and my experience was not dissimilar to this writer’s – although obviously I was only involved for a shorter time (9 years in fact), and not as a classroom practitioner.
I cannot say how the current national approach to teaching hurts. I prefer not to get very political usually, beyond my bleeding liberal tendencies, but today I am in the mood.
Namaste.

Love Learning....

I’m leaving my job. Not right away – I’d never leave children half way through an academic year – but I’ll be off in July. I think back to the post I wrote on teaching forever and I blush with the charge of hypocrisy, though, to be fair, after 22 years I think I’ve probably earned the right to say I did my bit. And hopefully I will continue to do more bits, but not again, I don’t think as a full time teacher in a school. So why? Well, it’s complicated.

It’s not because of the kids…

But they’re not easy. Last week one pushed me pretty hard and told me to fuck off. He’s vulnerable and floundering. We used restorative justice to talk through the situation and I got one of the most heartfelt apologies I’ve ever had. He beams at me in the corridor now. I’m not…

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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).

Rotary Float in 1967

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.

me as santaI 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.

Dark

Well my dears, it’s been a while, but here I am again.

Busy, you know. Thinking of you all but just plain busy. Things may be turning a corner soon though. Hope springs eternal.

This weekend the clocks changed, by which I mean we agreed as a nation to move from British Summer Time to Greenwich MeanTime, the real time by which the world spins.  So tonight we ate dinner with the dark night looming outside instead of merely fading light. And this year for the first time in my memory my mother didn’t remark upon nights drawing in. It was a tradition almost, that every year when the clocks changed she would mourn the loss of light in the evenings.

This year she is unaware of the change. By this token is her decline measured.

This weekend I finally caught up with the Internet – it seems to have managed without me for the last couple of weeks. Who knew that could happen; I had been concerned.

Anyway I came across a quote by Robin Williams:

I used to think the worst thing in life was to end up all alone. It’s not, the worst thing in life is to end up with people that make you feel all alone

When we completed dinner without the obligatory nod to winter’s imminence, I realised that in a way we were both alone. And that the pain of living with a relative with dementia is that you live with someone who makes you feel alone, because they are no longer present with you.

I’m sorry this is rather depressing to share. I have much to be thankful for regarding my mother. We are able to provide care for her that allows her to be happy. She is not aggressive or hard to deal with. She is cheerful most of the time. She eats well and asks for very  little. You can make her smile just by saying hello.

But when we sit together in a room, neither of us has anyone sitting with us.

John Donne claimed no man was an island, but perhaps dementia makes islands of us all.

May you enjoy the presence of loved ones, even those who are far away but can phone or email or tweet.

Namaste.

She ain’t heavy, she’s my mother

To see a world in a grain of sand,

And a heaven in a wild flower,

Hold infinity in the palm of your hand,

And eternity in an hour.

Excuse two posts in one day. I am not trying to melt your blog reader. It’s just been a thoughtful 48 hours.

I had an interesting conversation with a friend the other day. We were catching up after Christmas and sharing our tales of family derring-do. I told her about mother’s deteriorating state and we reflected on the description of dementia as “living in the moment”.

My mother is happy. She doesn’t remember anything from a few minutes ago: who she saw, what they said, how long since she saw them, even who they were. She sits and sings and hums, Sometimes she knits or looks at a book or newspaper, but without absorbing the text. The same brief newspaper story and photograph will absorb her all day.

My mother is happy. She lives in the moment. All she is aware of is what is happening now. You might say it is a consummation devoutly to be wished (you might not, of course, your prerogative).

There is currently a vogue for something called mindfulness, or “living in the moment”. You can read about it in an article from 2008 in Psychology Today.

This is not quite what my mother experiences, but it is akin. She is happier than she has been for some time, no longer lonely or missing lost friends, or dad. She has no worries. We all might wish for such inner peace.

However, her inability to remember what is happening causes severe stress when she is out of her usual environment. I took her for an eye check-up at the hospital before Christmas. It was a long visit because of a computer meltdown. The whole time she was unsure where she was or why and kept asking. The only thing reassuring was that I was with her, so she assumed things were under control.  I was not worried so she was not. I had to hide my impatience so as not to concern her.

Then is started to get dark outside and that did worry her. She was pretty sure she shouldn’t be out at night. It was only 4 pm but no matter how many times I showed her the clock, she forgot.

The end result of all the stress, and then the excitement of Christmas, was probably another vascular incident (the only way we know is when she suddenly gets worse) so she is now even more shrunken in on herself. She no longer reminisces about her childhood (we finished with married life and family about a year ago – she is unwinding before my eyes).

There is a critical difference between the dementia sufferer’s living in the moment, and the meditative one. Do not be fooled, my friends, by facile and trivial comparison, by the similarity of phrase and word. One is about seeing a world in a grain of sand; the other is about losing the world one grain at a time until all those falling grains trigger an avalanche and you are buried under their catastrophe.

I hope you will allow me to be honest with you about this. Or rather I hope you will allow me to be honest and not despise me utterly. My mother died a time ago and I have her husk living in my house. Watching her crumble is occasionally unspeakably distressing and a part of me wishes it were over. I don’t know who this woman is, and I don’t really want her here. Often I don’t think she knows me either. When she calls me “love”, I am her daughter; when she calls me “dear” I think I am probably a carer. I don’t have the courage to ask her. All I do is keep her alive, breathing and humming and reading the same paragraph endlessly. Some days my heart could break for both of us.

Some days though she is comparatively alert and then there is a flash of the woman who was thrown out of the dance hall for jitterbugging with GIs, or who topped her class at Pitman’s College, or who won the Christmas Raffle at work and spent half of her winnings buying me a book which turned out to be my favourite book of all time. Those days are more seldom now, but still they can shine out.

We never know which way life will take us. Clearly this weekend has taken me down some shady paths by reflective waters. Tomorrow I hope to step back out into the full light of day.

Namaste.