Missing

dementia poem

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 88th 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 88th 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.

Quick update

Alive and well, my dears.

Lots of knitting, a little embroidery and a weekend of meditation at the local Buddhist Centre have conspired to keep us apart.

Here is some of my stitchery to prove it is no lie. The cultivation of a mind of love defies my camera however, so please take my word for it.

Firstly I attended a beginner’s embroidery course in Kendal and produced this. I used to embroider as a child but have not picked up a needle since, so this was fun.

Dandelion embroidery

The stitched dandelion

I also finished the jumper I wrote about the other day – the Drops Garn pattern. I am quite pleased with it and intend to present it to Offspring in Question over Easter weekend.

11099730_10153269633013804_1777913377_nMy other activity (besides meditation) was the scattering of mother’s ashes at Scarborough. She now resides on a flowery hillside overlooking the sea and the castle. I think she will enjoy it.

How have you been?

Namaste

A funny thing happened on the way to the office

royalty-free-detective-clipart-illustration-1047906

Well my dears, here’s a strange to-do! The eagle-eyed among you will have noticed that in my last post I included a photo of my legendary toothpick knitting challenge. To be fair I didn’t think many of you would look at it closely, but that just teaches me a lesson, good and proper.

It happened like this.

The day after I posted my whinge abut DPNs, I had to go across to Head Office for a Very Important Meeting. Naturally I sprang from my bed in the grey and chilly dawn, as eager as a squirrel after acorns, bright eyed and bushy tailed. I bustled in and out of hallways and showers and kitchens configuring breakfast, clothing and toiletries (not necessarily in that order). Within the hour I was booted, suited and ready to go, and so I went. Most importantly I took with me my briefcase  containing my knitting, along with some papers, tickets for the train and my phone.

The morning train to Leeds is a proper caution, packed with giggling schoolchildren from the kinds of families that can afford to send their children miles away to schools where the teachers may or may not have chins. Apparently commuting form the age of 11 makes a man of you; a very tired man, it must be said, but such is life. Then there are the grey-haired 30-somethings who toil in the industrial heartlands of York, wrangling whippets and wrestling puddings for a fiver a go. In addition the keen observer may note bespectacled academics heading for Leeds and the one and only EBL.

I found my seat and started to knit. There’s no mobile signal so emails and phone calls are out of the question. Knittingis the only answer, as in so many scenarios. The lack of signal doesn’t stop the kiddies trying, and we all enjoy being lulled by the endless rounds of “Benedict? Benedict? Can you hear me?” which punctuate the carriage air in tones of constant amazement, as if the Howardian Hills only arrived last night and the phones have always worked before.

The other thing punctuating the air that morning, or perhaps I should say glutinating (as in making it glutinous), was a perfume. Somebody, probably a female, was wearing a year’s supply of Rose Garden Extreme, and generously sharing it with the rest of us. I can only assume she, or possibly he, let us not make gendered assumptions, had had an unfortunate incident before leaving home and not had time to rectify the damage.

Anyway, I was breathing through my mouth and trying to think of fresh air and open skies, when a voice enquired hesitantly:

“Do you write that blog?”

I ignored it, obviously, because who would respond to that kind of a question at 7.32 in the morning? A nutter. That’s who.

The voice repeated its interrogation, adding “I saw your knitting. I recognised the wool marker and stitch counter.”

Well, that made it alright then.

I looked up to meet the eyes of a mousy individual in a dark wool coat and carrying a rather bedraggled back-pack. She leaned across the table and added “I really liked your post.”

Obviously an individual of sophistication and distinction was concealed by an outwardly anodyne appearance, and not the murderous serial killer I had initially assumed.

Apparently she lived not too far from me, and worked at one of the hotels just outside Leeds as a catering manager. I vaguely recognised her form other commuting days; the crowd is pretty much the same year in, year out. We had a very pleasant time swapping tales of stitches, websites and TV shows we both enjoyed, although I struggled to forgive her for “Call the Midwife” and I suspect she was confounded by my passion for “Waking the Dead”. We both agreed on the wonderful “Wolf Hall” though, as does anyone sane. It’s fiction, get over it.

It was rather strange meeting someone who effectively knew more about me than I did about them. I admit I felt a little vulnerable. I mean, I don’t use my birth-certified name here, in case you wondered, but I suppose it wouldn’t be hard to work it out if you wanted. Some of you do in fact know me in the human world anyway. Nevertheless I felt a ambushed, bamboozled, embarrassed and quite stressed.

In short my fanfollowerstalker and I chatted until we got to Garforth, when inexplicably my new found friend had to depart. Does anyone get off at Garforth when heading west? Really? Why?

That was when I knew I had fallen asleep and it was time to wake up and face the day. It was like that moment in “Dallas” – which I never watched, but even I have heard about.

It turned out I had no fanfollwerstalker after all. I felt some relief but also a little piece of my heart broke. How contrary!

Suppose you were suddenly famous (or else, remember the time just before you became famous). How would you cope when the first person come sup and asks for an autograph, metaphorically or literally?

Namaste.

DPNs

I recently changed my working hours so that I now work four long days and have Mondays off. It’s marvellous – although my workday evenings are now compressed into the following: stretch – eat – speak briefly to Sigoth – sleep. Usually I take the Monday to do jobs that need attention, which may be anything from sorting out a bill to (more commonly) catching up on jobs I have agreed to do for my local Quaker meeting. Sigoth also uses Monday for his Quaker jobs and so the days formerly known as “Monday” are now called “Quakerday” in EBL Towers. However, this weekend we spent much of Saturday and Sunday being Quakerly, so this Monday I am taking time out officially to do Leisure.

As a result I can proudly announce that today I shall be mostly knitting with toothpicks.

Well, that’s what it feels like. Youngest Offspring has requested a jumper and so that is what he will receive if it kills me. The one he wants is this one:

The thing is it requires 3mm double pointed needles for the rib.

Now, I love circular knitting. No seams to sew up. But I am not happy using double pointed needles (DPNs). It’s like wrestling with half an octopus that has porcupine in its family tree, an octopine as it were. It’s scratchy and jabby and catches in my own sleeves and requires my fingers to bend in inhuman directions. Doing such digital gymnastics with the slender 3mm variety feels like a nightmare involving a speed-eating competition at the kind of Chinese restaurant where they won’t give you knives and forks even when you ask nicely and admit you are an inadequate human.

This is what I am working with.

I swear - toothpicks!

Half an octopine (or possibly a porcupus)

See what I mean?

Now I know that some of you out there will be massively competent at DPN-whispering. I admit I am slightly less likely to twist the first row and produce a Mobius Strip using them instead of a circular needle. I admit they look cool and entitle the user to claim a minimum of + 3 Knitting Ability at a Knitting Master’s Convention. Yet with all that admittedness, it’s still enough to drive a body to crochet, where only one needle is involved; although somehow that’s almost as bad. As George Orwell said, two needles good, four needles (or, alternatively, one) bad.

Suffice it to say I am most keenly anticipating finishing the rib of the second sleeve and bidding the toothpicks farewell.

Do you have this kind of love-hate relationship with your hobbies? After all I am supposed to be doing this for fun, but there are parts of the process (and I find this is true of most of my other hobbies as well) which really make my heart sink.

Namaste.

Vikings

As I told you last time (pay attention there!), Sigoth and I went to York last weekend for the annual Viking Festival. There were Vikings Galore! We had a fabulous time. I would recommend it to anyone at a loose end in February half term.

One of the reasons for the trip was that I wanted to buy a dress. This was because, my dears, the invasion of Vikings included a generous array of traders in goods and materials vital to the business of re-enactors. I was amazed to discover that many of the stall-holders were themselves of the Scandinavian persuasion and had made the trip to York for the purposes of trade and profit.

Don’t think I can’t see you rolling your eyes. Yes, you. You know who I mean. Stop it at once. Regular readers will be aware that EBL has more than a passing interest in the history and culture of the early medieval period of English history, also known as the Dark Ages or Anglo-Saxon period.  Every now and then I bore you with some Old English texts, or harangue the Vikings at the Battle of Stamford Bridge in September.

I belong to a society which studies the period and we have a stall. We attend the Stamford Bridge event, which is rather strangely organised by the local Viking re-enactment group. I say “strangely” because of course the Vikings lost that battle horribly. Harold Godwineson, aka King Harold II, the one with the arrow in the eye (if you can believe those who embroider history), chased them off in September 1066 before dashing south to confront William of Normandy.  The Vikings were more than decimated, needing only about 24 ships to take home the survivors who had arrived in an army carried by around 300 ships.

Here is our stall from a couple of years ago

Here is our stall from a couple of years ago

Anyway, we have a stall at the event and last year we all agreed it would be worth getting some costumes too, as it seems to draw in the punters. We have a couple of men’s outfits but no women’s so I agreed, along with another woman, to get some gender-appropriate gear. To do this, we needed to find suppliers, and who better than the traders at the Viking Festival?

Thus it was arranged. A group of us met at the Minster, ogled the stained glass on display in the Orb (again, if you can – go see this!), then repaired to a nearby pub for a lengthy lunch. We needed the lunch because we were planning activities for another event we shall be attending in May, when we shall demonstrate a number of Anglo-Saxon crafts and generally attempt to brainwash the public into understanding that the period was one of significant interest and importance. We are not overly optimistic; the Vikings seem to generate better PR.

AS DressIn short – here is the outfit. Sigoth has woven me a belt to go with it. It’s a late period costume; earlier dresses would have been in the style known as “tube-dress”, basically a tube of material held up by shoulder straps pinned in place. They were not especially stylish or flattering. As my friend said, everyone looked like a potato back then.

Of course, Sigoth and I also spent time at some of the special events over the weekend.

First up was the Beowulf by Candlelight in St Helen’s Church. Peter Carrington-Porter performed, without the aid of a safety net, a translated version of the poem. He recited for about 1 ½ hours the tale of Beowulf, Grendel, Grendel’s mother, and Beowulf’s death.  Epic tales, epic times!

The next morning, before meeting the group for lunch, we attended the Strongest Viking Competition. Much hilarity ensued although the lads worked pretty hard. There were six events: log carrying; shield wrestling; Dane Axe holding; sword fighting; tug of war; and boasting. The logs were large and heavy. The wrestling was fast and furious (it basically entailed standing on a “shield” or plastic mat, and shoving each other hard with open palms). The axes held had to be extended with the arms at 90 degrees to the body, for as long as possible (the winner was in the region of 120 seconds) and I can tell you the upper body strength required for that was pretty impressive. Sword fighting and tug of war need little introduction. The boasting contest was scored by audience volume. As the boasts for more extreme the cheers got louder. The winner amazed us all by reciting some poetry! The gods love a man who can fight, who is string and who can recite it seems. During the intervals Thor and Loki performed a double act to keep the crowd happy. We were honoured by the presence of the gods among us.

To prove it here are some blurry pictures.

Viking log carrying

Speedy Viking with heavy tree

Viking shield wrestling

That last push saw our man fall off his plastic-mat-shield

Viking Axe holding

This was really hard!

Loki teaches sword fighting

The gods walked among us and taught young people how to disembowel

In the evening we attended the Grand Finale: the creation of the earth and then an attack by the Vanir on Asgard. There were lots of people dressed up in costumes running about in a field pretending to kill one another. Given that it was a February evening in Yorkshire it was freezing and my feet and hands were numb, but it was worth it for the fireworks from Clifford’s Tower at the end.

We missed lots of other events of course: the best beard contest (with categories for men, women and children), Dragon Boats, Viking Bake-Off and the march through town. Maybe next year.

It’s interesting how the Vikings these days are viewed so sympathetically. Of course, England has had its Viking king – Cnut. Just the one though. Perhaps if Harold Godwineson had lost at Stamford Bridge, Harald Hardrada, his opponent, would have seen off the pesky Normans and who knows where we would be now (well, it would be Greater Norway obviously). Or, if Harald had not invaded, HG would not have been so weakened in Hastings.

History turns on a pin and the gods laugh.

Namaste.

Knitting mojo

While I am away in York, through the miracle of technology, and scheduling software, I thought I would keep you company by telling you about my knitting. Let the good times roll.

It has been a while since I did much knitting, as my head has been in a different plane of existence form my hands, and I haven’t been able to concentrate on anything as tricksy as counting or remembering whether to knit or purl a stitch. I am pleased that the msits seem to be clearing at last, and I have now achieved two important goals.

The first was to finish my Killing jumper. For those unfamiliar with the garment in question (I believe there may be some people left in this unfortunate position), I am referring to a particular jumper which was the star of a Danish crime drama a few years ago. Naturally I set out to create my own copy, being a fan and all. It’s a pretty basic pattern but it was first time I knitted anything entirely in the round (no seams, just tubes) and I had a bit of a job sorting out how to keep roughly to the pattern while increasing and decreasing. I hope I got away with it – at least I now feel happy about a) making another next year in reversed colours, and b) wearing the article in public.

Look out if you are a Danish criminal - EBL is now fully equipped to bring you to justice

Look out if you are a Danish criminal – EBL is now fully equipped to bring you to justice

The second important thing was finally learning to crochet. This means I can now crochet about as well as the average crochet-enabled 5 year old, which is more than I have ever managed before. I went on a course in November, but understood even less than I thought I knew. My poor saintly aunt had tried to teach me as a child but it never worked. Somehow my brain didn’t bend that way. It’s like trying to write with the wrong hand; I’m just not ambidextrous.

But then something switched on in the grey matter and suddenly it made sense and I managed a circular object. It was untidy and uneven and ungood, but it was a real thing and I was very happy to have got that far.

crochet by EBL

A trumpet against the nay-sayers! This old EBL got there in the end

So this EBL learned a new trick against all the odds and almost 50 years of evidence to the contrary. Who says miracles can’t happen?

Have you ever had a sudden epiphany like that? Do tell!

Namaste.

The end of days

Well, perhaps I overstate it when I say “end of days.” However, it is certainly the end of the financial year and our Highways Authority is spending up like tarmac was going out of fashion. The main trunk road to the coast is closed off and traffic being diverted via the road at the end of our village lane. This very same road, now carrying more traffic than anyone would have believed possible, is only semi-open because of roadworks which have closed off one carriageway, and using a traffic light system to control flow. I say “flow” but I mean “stagnant pauses of sufficient duration to calculate pi to a new digit.”

Naturally when Sigoth and I decided to go into town this morning to look for essential items – such as circular knitting needles and pastries and coffee – we went the back way, through some other villages to avoid the snafu that is the usual route. We had forgotten in our haste and cleverness that the road through the next village was also closed while work is being carried out there.

We took the scenic route. It was several miles out of the way, but it beat going back home and then queuing in traffic.

Tomorrow we are going to York for the Viking Festival to hear Beowulf and to enjoy traditional Scandinavian activities, such as shopping and drinking coffee. We will take the bus, and leave the stress of finding the way to someone else. We would have gone by train but there are no trains running this week. Being half term the railway line to the coast is shut down while they do some work on the bridge over the Ouse in York and thus amputate the East Coast from mainland England.

It’s half term. It’s damp and grey. The families we saw in town were looking the worse for wear, seeking entertainment at reasonable price in a very small market town where the highlight of the town trail is a couple of small rooms forming a Victorian office allegedly responsible for inspiring Dickens to write about Scrooge. It’s not a barrel of laughs for most under-50s.

On the bright side, Vikings!

I hope you have a wonderful weekend and that the weather, transport system and barbarian hordes in your vicinity are kind to you.

Namaste