I knitted a tea cosy and it seems the best day to use it!
Ah, Summer! As the sultry July days count down to August splendour, naturally I was overjoyed to receive my first charity Christmas catalogue in the post yesterday.
Bad enough there were cards in the shops even before the children had broken up from school. Bad enough that the restaurants are already advertising their special menus and group bookings for the December festivities. Bad enough one the shops I regularly buy clothing from sent me an Autumn/Winter clothing catalogue. I could just walk away, averting my gaze and muttering a Hail Mary under my breath like a lost monk in Soho.
This one mugged me though. This one was in an envelope promising other goodies. Sigoth and I recently signed up to be members of a particular charity and here was our shiny handbook, detailing places of interest to visit. Our dreams of weekends spent traipsing along cliff tops were rudely interrupted by the advent of, well, Advent. In July. In a heatwave. I do not live in the Southern hemisphere, so it was just wrong on every level.
Still, I don’t want to be all Scrooge about it. Who doesn’t like a jolly winter festival with feasting and frivolity and fat men stuck in chimneys? If I’m going to have repetitive tunez inflicted upon my eardrums in shops I would prefer Noddy Holder over some Lounge Lizard any day of the week, or indeed, week of the year.
So bring it on. After all, I make the cake in September so it can soak up the brandy goodness for a few months. Not long until September really.
With that in mind I’m starting my Christmas list, and I’m going to share it with you so you know what to get for my stocking.
- A chocolate orange. No stocking is complete without one of these in the toe end. The option of a genuine satsuma or clementine may be laudable, but let’s get real here. Chocolate is the way to go during the holiday season.
- A pair of black socks. Not those stupid socks with cartoon characters and dodgy slogans which you can’t wear to the office for fear of offending the receptionist. A decent pair of black socks which will actually be useful for the rest of the year. Otherwise I would feel bad for the slave labour that created them.
- A notepad and pen. Just in case I want to write down a phone message from someone who can’t work out how to use text or email. Because there are still lots of those people left in the world.
- Soap. Apparently there’s a rule at Christmas that says we all have to use our own soap instead of the perfectly serviceable soap in the bathroom.
- Chocolate liqueurs. See (1) above, but with added alcohol for the real meaning of Christmas.
- A magazine. This is a tricky item because I have to forswear magazines during November and December just in case someone gets me one I have already read. Alternatively you could get one of those rip-off Best of the Year style volumes, which just include all the stuff they already printed in a new issue. Because recycling is good, don’cha know?
- A small toy or novelty item, ideally as repulsive as possible. Christmas is about meaningless tat, so let’s start the day as we mean to go on. A sparkly vampire keyring, a furry dice or anything from a Pound Shop is ideal.
- A small gift the giver and the receiver both actually care about. This is the apology for most, if not all, of the above and says “I love you really.” Which I suppose is the essence of Christmas.
Have a marvellous summer.
It felt like it was time to write a post about peace, there being so little of that precious commodity available, and it being such a Good Thing generally. Sometimes it feels like Peace is the Giant Panda of Life, vanishingly rare, arguably impractical, but nevertheless illogically desirable to keep around.
What particularly sparked me off though was a reminder that it has been a while since the Cold War fizzled out, and that being so, the paranoia and constant gnawing worry of living under the shadow of the Bomb is now a fading memory. Perhaps, I mused, it is something we should remind ourselves about once in a while and try to explain to the young folk who have not experienced it. This is based on the premise that those who do not learn from the past are doomed to repeat it, so bear with me and prepare to be reminded or educated.
Growing up in the Sixties and Seventies had its perks, certainly. The music was exciting, there were real astronauts walking on the Moon, and a sense of excitement in the air. There were downsides too, and the testosterone-fuelled face-off across the Iron Curtain was a major issue. This was not because I was incredibly politically aware; I was a child, and my parents were not interested in politics themselves, so I only learned about such things through watching the Man from Uncle on television and seeing posters for the latest James Bond film in the cinema.
It wasn’t something you talked about particularly. It was just there, all the time, at the back of your mind, like what to get for tea, or how long it was until the weekend. It wasn’t even a thing, any more than air or water or the bus being late.
As the Seventies drew to a close and I inched towards the precipice of adulthood it became obvious that things were awry and the world seemed to be edging towards its own brink. This post is about how much it preyed on our teenage minds. This is how it felt.
We had been told that the other side of the Iron Curtain was full of bad guys. People got shot trying to escape, and their deaths peppered the news every now and then as a kind of constant background noise. Just about the time I read 1984 and started to be a little more independent of the official line, the Ayatollah Khomeini lead the overthrow of the Shah of Persia, and took control of Iran. I didn’t understand the background and had barely heard of Iran before then – O-Level geography tended to focus on learning which country exported the most timber and how ox-bow lakes were formed. After that I gave geography up as a bad job and still struggle to work out the difference between the Solway Firth and the Solent.
However, his installation seemed to cause a hysterical fluster in the media and political circles and it looked like the Nuclear Option was suddenly on the table. For real.
We had read about Armageddon and we didn’t fancy it but we were powerless to stop the button being pushed. However, we were not deterred. We were resourceful and modern young people. A few of us had recently passed driving tests and a couple of us even had access to dodgy old cars. So we laid our plans.
This is where the age gap may show. Those of you in my generation will probably nod at what we intended and understand our reasoning, even if you don’t agree with it. My children and younger folks tend to just look bemused or even slightly appalled when I talk about it.
We set up routes and a telephone tree. We agreed pick up points. Cars were to be kept fuelled up for a drive of about 20-25 miles. When the four minute warning was given, we would rendezvous at the agreed locations and drive like hell into the centre of London.
We weren’t going to sign up for a cause.
We weren’t going to protest.
We were aiming to be at the centre of the bomb fallout, because none of us wanted to survive a nuclear war. We hadn’t seen The War Game because the BBC banned it (despite having commissioned it in the first place) until 1985. Nevertheless we had read about Hiroshima and Nagasaki, and seen pictures.
We intended to die as quickly as possible.
And that, my dears, is what at least one group of teenagers in the late 1970s planned to do in the event of the button being pressed.
War and the means for war mess with your brain. Let’s call it out, shall we?
Occasionally I post about life as a British Quaker under the structure of the Quaker Alphabet Project 2014. I haven’t done so for a while and am in danger of falling behind schedule, so here is a post for the L of it.
There is a perception often quoted, not unreasonably as it turns out, that Quakers are a bit on the mature side. It’s true we have “Young Friends” who are pretty active. However, they remain sadly outnumbered by the Silver Horde, at least in my neck of the woods, and in keeping with many other religious congregations in this country. There was great excitement the other month when a bona fide young person of the teenage persuasion applied for membership of the Society. It was like getting a letter from Elvis c/o the Loch Ness Monster and delivered by a leprechaun riding a rainbow. What I mean to say is, it was a bit unusual and slightly thrilling.
Some years ago I was fortunate to be a member of a relatively large Quaker community with three (count them!) age groups for under-16s. It was not the usual experience of Quaker groups up and down the length of the land. Since moving Up North I am now a member of a small and chronologically-well-endowed group. Yet we do not despair at our reducing horizons because we now have two young people among us – a male toddler and a female school person. They bring their parents along about once a month and keep company with various members of the meeting who enjoy playing with toys and drawing pictures and singing songs while the parents snooze in the main meeting room. It’s an act of kindness really.
The best bit of all is when they join everyone for the last fifteen minutes of the meeting for worship. In Britain, Quakers usually hold silent meetings for worship (not having “programmed” services like, say, Anglican churches, with sermons and singing and standing up and sitting down all and repeating words out loud). The people present sit quietly, apart from the Rumbling of the Stomachs, and wait for ministry to find them. Most people think it is a bit odd, but nevertheless the end result is a usually a quiet room filled with slightly sleepy people who have been sitting for 45 minutes and are beginning to feel it.
Enter our Youngest and Brightest! We hear them clattering along the passageway, with their retainers encouraging them to be quiet by making lots of loud shushing noises. The children usually are making no real noise at all, but never mind. The door swings open and in comes the first child, beaming from ear to ear to see all the old folks grinning at him, and often reaching out hands to welcome him inside. Then his sister, a little more self-aware and so slightly shyer, comes in behind him, composed and clutching some treasured picture to share with us. It may go straight on the table in the middle so we all crane to see it, or she may wait until Notices are read out at the end and then wave it at us. Meanwhile her brother sings to himself or stumbles around from one arthritic knee to the next, smiling up at the faces and dribbling a little. Sometimes we dribble back. It depends on the medication.
Quakers are very fond of using the imagery of the Light Within or Inner Light to talk about their relationship with God. Nowadays we don’t generally describe ourselves as Jesus’ little sunbeams, just talk about Light in a more general, non-denominational way. Early Friends in the 17th century were more direct in their writings about God and Jesus, but still the imagery of Light was fundamental to much of their thinking.
I was under great temptations sometimes, and my inward sufferings were heavy; but I could find none to open my condition to but the Lord alone, unto whom I cried night and day. And I went back into Nottinghamshire, and there the Lord shewed me that the natures of those things which were hurtful without, were within in the hearts and minds of wicked men… And I cried to the Lord, saying, ‘Why should I be thus, seeing I was never addicted to commit those evils?’ And the Lord answered that it was needful I should have a sense of all conditions, how else should I speak to all conditions; and in this I saw the infinite love of God. I saw also that there was an ocean of darkness and death, but an infinite ocean of light and love, which flowed over the ocean of darkness. And in that also I saw the infinite love of God; and I had great openings.
But when our children join us in meeting for worship they bring that infinite light and love with them and in abundance. It is a gift to us and one for which we are humbky thankful.
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.
Yesterday’s post was bleak, so today I thought I would share a local news story with you for fun.
The A64 is the main road from York to Scarborough, passing near Malton on its way. Yesterday a lorry shed a load of instant mash all over the carriageway and chaos ensued. For reasons I do not fully understand I find this very funny.
You can also get a blow by blow account via the North Yorkshire Police twitter feed (@NYorksPolice) including many potato related puns
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.