Tag Archives: dementia emotional cost

30 Mar 2025 · 6:44 pm

Thoughts …

It’s Mothering Sunday today, which is British Mother’s day, which is a church holiday, which is why Mother’s day is in May in every other English-speaking country. Mothering Sunday was originally the day when people went back to their ‘mother church’ or in other words, it was the one day a year posh people’s servants were allowed to go home and visit their families.

I went to church, because I’m a fully paid up God botherer and I’m in the choir and I came home with three rather lovely polyanthuses, which I shall plant in the garden.

This Sunday also has another name, ‘Refreshment Sunday’ which was a give-us-a-break-from-the-sackcloth-and-ashes day in the middle of lent. At my church, it also happened to be the 50th wedding anniversary of a lovely couple so the refreshments in question were cake and prosecco (om-nom-nom). All very jolly.

Elderly lady sitting in a coral coloured chair holding a paper. Her glasses are perched on the end of her nose and she’s smiling

Mum.

This is the second Mothering Sunday without my mother and the first without McOther’s. I was thinking about how I felt which was alright, actually. I am still perennially knackered but I have a lot more energy these days, and most of the knackeredness is because I’m eating the wrong things I suspect. I need to take a bit of a pull at myself as I’ve slightly fallen off the healthy eating wagon this week.

Mentally, that’s alright too. I still think about Mum, well, both my parents a lot. It was kind of reassuring after she died to discover how turgid all the admin and paperwork was without Mum at the centre. I’m glad I realised, while she was alive, that her gentle presence in the middle of it all is what made it worthwhile. I’m glad I could see that at the time and I’m especially glad that I clocked it enough to relax in the moment with her on my visits and just enjoy being with her. She was, as she would have said, ‘a darling’.

It also got me thinking, I have a particular memory early on in the whole dementia business, when I was going to see Mum and Dad often but hadn’t settled into the routine of every Wednesday. Or perhaps it was a family thing and we were all down to stay at the house. I’m not sure. It’s not really the point here, I was dispatched to the vegetable garden to pick runner beans. I lost myself, moving backwards and forward along the row—frequently changing position to ensure I searched the climbing tent of bean plants from all angles, the better to spot the tasty treasures hanging within.

As I worked I forgot about everything else. A massive bee droned by and I paused to enjoy its progress as it trundled past, heading haphazardly towards the cabbages. Utterly in the moment, I forgot to be sad. A sense of uncomplicated happiness wrapped itself around me like a well-worn coat before I remembered that actually, things weren’t so great and I wasn’t like that now. I’d caught a glimpse of something through a forest, a tiny snapshot from a forgotten time that I could hardly recall, when happiness like that was my default state. A time when life was uncomplicated and the web of other people’s love which upheld me was solid and true, and unmarked by anything.

It was a sliver of something I hankered to return to, in the middle of a situation when I could never have it. Caught up in a world of sadness and concern that felt as if it was going to go on forever, it shocked me to realise it was lost. It was the most potent feeling. In some respects it made me sadder but I tried to see it as the gift of momentary respite it was and carry it with me.

Over ten years later, this morning, in church, I felt a mix of emotions as I sat and thought about things. And then, along with those thoughts came another weird glimpse of a life in reverse. Sure I miss my parents. When I look around the world as it is today, it still feels as if the light has died. But at the same time, I don’t miss watching them suffer. I don’t miss the heart-breaking sadness, or the life spent on tenterhooks, waiting for the disaster to fall and the call to come, waiting to drop everything and drive 150 miles in the middle of the night to pick up the pieces.

As I thought about it all, I realised that I am a lot closer to the cheerful happy person I was before this all blew up. There are a few things I regret, I had looked out a stack of books I thought I might bring home and never went back for them. I meant to grab some of my mother’s paintings and I forgot to do it on my last trip down there. I found a beautiful vellum document which was my great grandfather’s certificate of ordination. That was Dad’s grandfather. I decided to leave it for now, think on it and maybe collect it later. I never got back there so that’s gone too.

Finally, on the book shelves, I remember finding two leather bound bibles, both in a terrible state of disrepair with pages falling out, the spines hanging off and chunks of pages. One had a maroon leather cover, the New Standard Version, that had been my father’s. The second had a black leather cover and was similarly in pieces. That had belonged to my grandfather (my mother’s father). I think that was the 1600s original translation, which is mind-blowingly well written. Bizarrely, now I’ve had time to think about it, if you asked me what I would have rescued from the house if it was on fire, those two bibles would be one of the first things I’d have picked. And I left them? Why the fuck did I do that?

Two items that were precious to and venerated by people I loved and admired. Knobhead. Then again, I did manage to get almost all of the other inconsequential things that had stories; including the plants and they’ve survived the winter. So there’s that.

Also on the upside, I have the lodestar; my Mum’s engagement ring. I wear it all the time and in it is wrapped up everything about the people my parents were and the person I believe I should try and be. It was picked with love by Dad and worn daily by Mum. It reminds me of the light; their laughter their sense of mischief, the way they took the piss out of one another. It tells of their open-hearted acceptance of others, their kindness, their empathy. It reminds me that they are OK and that I now carry the light and that I will just have to voraciously read (and destroy the binding) on my own bloody bible. It shouldn’t be that hard to read it more often and I have copies of both editions for fuck’s sake.

And these days, instead of feeling as if the light has gone out and there’s a void where my parents should be, it’s as if I stand on solid ground and they, and the light, are there round me.

It’s alright.

6 Comments

Filed under General Wittering

Tagged as , , , , , ,

17 Nov 2024 · 5:50 pm

The gap between intention and delivery …

It would be my Mum’s 91st Birthday tomorrow and it feels surprisingly weird. For starters, I had a horrific dream that the ongoing stomach thing went comprehensively wrong while I was out with friends. I dreamt I had stomach cramps and thought nothing much about them, little realising that I was actually bleeding to death at a wine tasting. The final death scene, where I keeled over and hit the deck in front of all the horrified wine tasters, threw me a bit, especially as it was what I called a deja-vu dream, which is difficult to explain but is just my slang for dreams that mean something.

Thinking about it, I suppose I tend to dream about death when I’m processing a change in life. I suspect it’s pretty standard for most people, fear of the unknown, fear of new because what is death, after all, if it isn’t a step into the unknown?

Elderly lady sitting in a coral coloured chair holding a paper. Her glasses are perched on the end of her nose and she’s smiling

Mum.

In a few weeks, it will also be the first anniversary of her death. I miss her terribly. Even demented Mum although it’s undemented Mum I yearn for; the lovely mercurial, funny, lively lady who gave ZERO fucks about making a tit of herself if that’s what doing the right thing entailed. The fabulous cook. Her boundless hospitality and her kindness and good humour and her unerring instinct as to what The Right Thing To Do was at all times.

And weirdly, I miss my Dad. It really felt as if he was there over those last months, when the money ran out and I accepted that we were going to have to move Mum. I know The Pan of Hamgee has virtual parents (cause, write what you know, hey? And I definitely did there). I kept hearing little snippets of ‘Dadspeak’ in my head. It felt as if he was with us most of the time as Mum got ill and also after she died.

PIcture of an older man in a cardigan and shirt sitting in front of a window. He’s wearing a panama style hat and smiling.

Dad

I think, because of that, I miss undemented Dad too in the same way. The joyous fun-filled bon-viveur. The patrician rebel. The very dapper man who looked so establishment yet had a wicked sene of humour and loved to prick the bubble of the pompous, and of course, ditto with the right kind of no fucks attitude to making a prick of himself. It’s not so hard apologising, it really isn’t. I find it really hard to understand people who are unable to admit they are wrong or back down. Dad and Mum would just say, ‘oh dear, have I made a boo-boo?’ or something similar, apologise and move on.

I miss the seemingly boundless capacity for love and kindness towards their fellow humans in both of them, their sense of duty. They were giants of people. It’s a lot to live up to.

All that about love and doing the right thing makes them sound terribly serious. They weren’t, they were just unbelievably open and accepting. There were two kinds of people in their world, people who were twats and everyone else. I think my parents were in their 80s before I met anyone as unshockable and accepting as they were, although I’ve since been lucky enough to find more of them.

There were gargantuan meals, a lot of my family life was about eating—they took the agape thing seriously—there were huge Sunday lunches, or small ones, depending on how many people they found who ‘weren’t doing anything’ on Sunday. Their dedication, at Lancing, to giving a slap-up Sunday lunch to any stray younger members of staff or boys left in the house on exeat weekends, and failing that, my or my brother’s friends. There was laughter, the silly stories and Dad’s impressions. The stories they told against themselves because they were funny. The humour, warmth and laughter. Their home was a sanctuary; not just to me but to many others.

An elderly man and lady standing in front of a fling and sandstone archway. They are smartly dressed, her in a fuscia pink jacket and top, him in a suit with a striped dark blue and light blue tie. Their arms are linked and they are holding each other’s hands and smiling

Love is in short supply at the moment so I miss the pair of them more keenly. I miss the way they lived their faith, their principles, their strength of character and their courage. My parents; my guiding light in how to behave, my moral compass in many respects. The light has gone out. Now I have to be the light and I’m a long way behind them.

For some time, I have been thinking, that I should write a memoir about Mum and Dad. The rationale behind it was to paint a picture of what it’s like walking the dementia journey. Taking the hand of someone you love and walking beside them, into the dark. The things to look out for and be prepared for. The things which will hurt and maybe, ways to deal with that pain that helped me and might help other folks.

But I’m having trouble starting. Maybe I should just write. Barf it all up onto my computer and sort it when I’m done. I dunno. I find myself writing two memoirs. The dementia one and one about them and the ridiculous stories they used to tell. And their ridiculous peccadillos. Dad was pretty much a walking compendium of the Guide Michelin, if you mentioned a place he’d be able to tell you about a ‘red underlining’ or a ‘knife and fork’ etc. His holiday reminiscences comprised lists of the glorious meals he’d had and where followed by a mention of a visit to his very long-suffering French cousin, Marianne, to be ill. He underpinned a lot of his experiences with food, setting life against the background of meals. Mum, I think, was more interested in the random people she met and their stories. She would spend hours talking to everyone and remember who we met and what their story was. I appear to have inherited this.

The second memoir, the one about them, probably isn’t going to work as anything other than a family document.

The dementia one is harder because it flies in the face of a lot of what was true and good about who they were. Especially Dad, because he was one of the most empathetic of people, and it took that from him.

However, putting myself in the shoes of us at the beginning of it all again, all we knew was that people who were diagnosed with dementia tended to become a bit forgetful, then they would disappear and three years later you’d hear they’d died.

None of us knew what happened in those three years. Well, OK, maybe Mum and Dad did, I don’t know. I’m guessing they would have talked about the future when they realised something was happening to Dad’s brain in 2004. They did their power of attorney then had a big 40 year wedding anniversary party because they didn’t think they would make 50. They did make 50 in the end, but it was a struggle and in many respects the photos were better than actually being there.

Even so, I guess what I want is to write something uplifting and at the same time, true, honest and informative so people knew what to expect. I wanted to hold their hands and guide them through it. Because it’s less about managing the demented person to be honest and more about managing yourself.

There was no guidance for us; nothing and in Mum and Dad’s area, one of the excellent charities that might have helped and guided us didn’t operate in Sussex. There is still no other guidance than charities in most places and for us that was simply a string of being told ‘we don’t but x might’.

So yes, I guess I’d like to help other people taking their first steps on the road. Shine a little light onto the path ahead, or the shapes that might be coming out of the dark. At the same time, I also want to send a message to the powers that be. Look at this you utter bastards. This is what you’re doing. To tell them the whole truth and not hold back.

However, there are points where it feels a bit disloyal, to Dad especially, because his dementia affected his personality more. When Dad started to show signs of dementia we didn’t know what to expect. I owe it to others to tell them, but I owe it to Dad to do it the right way.

The explosions of unexpected, hurtful anger would have mortified pre-Alzheimer’s Dad. Maybe I should just stick at no-one will tell you, no-one will commit to anything, there are organisations who will help but no-one will tell you who they are or how to contact them. Because they really won’t. Even in 2015, a mere four years before the Alzheimer’s ran its course, we were like lambs to the slaughter. We hadn’t a fucking clue what was coming.

‘What will happen to Dad, how will the disease progress?’ I used to ask the professionals.

‘We can’t tell you because no two people are the same. Each person’s journey is different.’ They always replied.

This is true in some respects, I mean, clearly no two people’s journeys are the same. But in others it’s complete bullshit. Indeed, what it really means is, ‘We can’t tell you what you’re in for. It’s too horrific. If we’re too honest with you, you’ll never stay the course. You’ll run or worse, we might have to offer you some meaningful help.’

At the time I was angry in the face of what felt, to us, like a conspiracy of silence. But now that I’ve reached the other side and I come to talk about what it was like I too feel reticent.

I want people to know but in some ways, it’s easier to talk about Mum, because the dementia was kinder to her and it never took away who she was. While at the same time, it’s more difficult in other ways because her loss of cognition hit me harder. I’d been trying to get her through Dad’s journey alive and well so she would have time to mourn, regroup and relax in her last years. I wanted her to have just a few years without a care in the world, where we could just be friends.

Well, actually, I suppose that even with the dementia, that is pretty much what we did for her but not entirely. She was going to downsize and possibly move into the retirement flats just up my street, if I could find her one, or near my brother, or if she couldn’t decide, somewhere smaller in her village. Instead she insisted she stay in the house which, though lovely, was bleeding her dry almost as fast as her care costs.

The same milestones came and went on the descent; the day she forgot where ‘home’ was, the day she asked if her parents had died, the day she said she thought I was her sister … but she was always kind and never lost her sense of the ridiculous or her sense of humour. She could laugh at herself until the very end. It was easy to align myself in the moment with her. (With the exception of when I looked after her one Christmas and she was knackered, way more demented than usual and I got 4 hours sleep in 3 days. That was the one where I burst into tears and begged her to go back to sleep at 2. am. She was very irritated with me but did, at least, do as I asked.)

Even though her brain was ravaged with dementia, she still had the same startling amounts of intelligence.

With Dad, I feel disloyal describing some of the things he said and did under the influence of Alzheimer’s because it wasn’t who he was and I don’t want him remembered that way. But also because I realise now, as I encounter more and more people who are treading the carer’s path, that despite Dad saying and doing some truly horrible things, he actually fought it with everything he had and I don’t want to do anything that might underplay that, like describing times he was awful in too much detail, for example.

It’s left me unsure how to explain what happened to us, how to paint the distress and the horror Alzheimer’s causes enough for any readers in authority to take notice, without demeaning the people at the centre of it or terrifying readers who are carers at the start of it. Because yes, it is bleak, and fucking relentless, but there are moments of lightness. Dementia care is a model lesson in the maxim that you only get out what you put in. But the ever-present grinding reality of it makes it hard to find the mental bandwidth to make that commitment sometimes.

You have to learn to look for the moments of joy among the disconnected brain fuzz. You have to learn to pivot to stay alongside your person with dementia. You have to make it all about them because they are incapable of thinking about you and that, in itself, is a horrible thing to come to terms with. It can be done. At a very high cost to the carer, for sure, but in the long run, it comes at a cost that’s slightly less high than not doing it.

Then there’s the political side. The righteous anger I still feel at the injustice of a system that asset strips the most vulnerable people because it knows they are too exhausted to fight back. The fact that care provision is a postcode lottery and there’s no information, no help, no guidance. If you’re in Sussex, they offset the value of care costs against the value of your house up to 100%. In other counties, they very magnanimously allow you to keep £250,000 worth of the house if it’s worth more than that.

Sheep grazing in a green grassy meadow with the sun behind them in such a way that it looks as if they’re surrounded by an all body halo.

Nuclear powered sheep

There’s a lot of ‘signposting’ and most of it takes you a very long time to be signposted to another body, round in circles, via many hours on the phone on hold. Everything is stacked against you, benefits, the care system, social services, all of it.

Carer’s allowance, for example. You have to be spending 35 hours a week on care for your relative. But if you have small children, you don’t have 35 hours a week, you probably have about 15 or 25, tops. You might be looking at a part time job, except if you’re a carer, even at a distance, you’ll be spending all that time running someone else’s house, paying wages, bills etc. Oh and sorting out an endless stream of small domestic disasters.

’Darling a man rang, and I’ve given him my bank card details.’

’Don’t worry Mum, I’ll stop the card.’

So that’s 4o minutes wrangling the India based call centre. Then sorting out who needs paying what and paying them and not forgetting to take £200 cash down with you next time you visit to tide them over until the new one arrives. Heaven forefend that there’d be a branch of a bank you could go into or that your non-standard problem will be comprehensible to the help bot AI.

In my own experience, as my lad got to school age, I wondered about part-time jobs but the day a week I did visiting, the emergencies, wages, banking, wrangling with government bodies, utilities, their ISP and all the other bits and bobs, plus the fact that I could only work during the school day, put paid to it.

I spent all my free time sorting out Mum and Dad but the non-mum time I was doing it in didn’t amount to 35 hours a week so despite my activities meeting the criteria for carers allowance I was ineligible. I am guessing a lot of people with kids who are carers at a distance are in that situation, which is probably why carers allowance is set at 35 hours a week and not a lower amount.

Or maybe everyone else just lies on the form. I dunno.

Lastly, the relentless sadness. Being sad makes you unproductive, unable to concentrate, listless and lacking in energy. It makes aches and pains worse, it does pretty horrendous things combined with the menopause. When it all began, in 2012, I had a course of cognitive behavioural therapy on the NHS which was a godsend but I was still sad and being really sad for 10 years does take it out of you a bit. It’s only now I am beginning to realise how much it took.

As I understand it, this side of it is a bit more hands on and ongoing now. At the time, all they could offer me, after I’d done the CBT, was depression meds. But a regular side effect of depression meds is brain fog and as that’s a very marked side effect of dementia care, too, it was the last thing I needed. And that’s the thing. A lot of dementia carers aren’t depressed, they’re sad. Depression is ill. Sad is a response to outside stimulus. It’s not the same thing.

Picture of a very still lake and the sky with reflections

So … in a nutshell writing a dementia carers memoir is hard (no shit, Sherlock):

  • It’s hard to outline the difficulties without sounding graceless about time I actually gave willingly or sounding like I’m bitter and twisted, and railing angrily against everything.
  • I still can’t talk about what people should expect from the NHS and other bodies—asset stripping the vulnerable anyone?—without actually being bitter and twisted, and railing angrily against it.
  • I probably need to let some stuff go. For example, I hold the care system responsible for my mother’s vascular dementia as I’m pretty bloody certain it was brought on by the stress of navigating the care system while looking after Dad, with his dementia. It was her choice, and I can only marvel at her courage because I’ll bet she knew what it meant. She did what she believed was right for Dad, and in the absence of any help from social or NHS care, she did what she believed she had to do if she wanted to be able to look at herself in the mirror every morning. It killed her brain.
  • It’s hard to outline what happens over the years as dementia progresses without devaluing the worth of your loved ones who suffered it.
  • It’s hard to be truthful about some forms of dementia and to shed light on what to expect from the journey without terrifying others.

That’s my conundrum.

With two outstanding exceptions, most of the memoirs I’ve read about this have felt falsely upbeat. Oh there is an up, there are fabulous moments, but the darkness is greater. It wasn’t an upbeat experience, even if there were times of joy or happiness, times of beautiful and heart moving poignancy, and times that were funny. Dementia is a lot of things but it isn’t fun, and while there are dapples of sunlight on the shady path, the secret is managing your levels of acceptance and surrendering all semblance of controlling your life. The dementia controls a lot of your loved one and by association, it controls you. It feels never-ending, it’s exhausting, there is fuck all help, and it lasts years. The only way to survive it is to accept that truth and adapt accordingly.

It’s hard, it’s sad and it’s relentless.

Picture of a rainbow in the sky with trees and a patch of blue.

How do I try to help someone prepare for that? I can’t even research it and give them answers, or organisations to turn to, because they are not the same in any area. Sod it! They vary from town-to-town. No! It’s worse than that, they vary from doctors’ surgery-to-doctors’ surgery, let alone county to county, or health authority to health authority.

I set out with all these grand ideas but there seems to be a bit of a gap between intention and delivery. Maybe I just lack the skill to write this yet. Or maybe if I just keep writing about it, my scattered thoughts will crystallise and clarify. Who knows.

Onwards and upwards I guess.

And now for something completely different …

That was a bit grim. Sorry. Let’s lighten the mood. If you need cheering up there’s always a bit of K’Barthan invective. Yes, I have made a K’Barthan Swearing and insults Generator. It has taken me a long time because I take to coding about as well as the average cat would take to obedience classes but finally it is done.

If you’d like to see it you can find it here

K’Barthan Swearing and Insults Generator … Click Here.

Until next time then, toodle pip.

11 Comments

Filed under General Wittering

Tagged as , , , ,

11 Aug 2024 · 12:00 pm

The end … or … is it the beginning?

Where have I been? I’ve been selling a house. That’s where I’ve been.

This house

It’s been a hell of a ride. After needing a document from me which delayed everything, exchange on Mum’s house was delayed from the Wednesday until the Friday. On the Friday the people at the bottom of the chain, the ones who had put the most pressure on everyone else to hurry the fuck up, suddenly decided they needed an indemnity over something over their sale and there was an argument as to who paid. We tried again the following Tuesday, still to no avail at which point, I believe, their estate agent volunteered to pay for the indemnity to get things moving.

So on the Wednesday morning, as we set off for France, a week after we were supposed to have done it, we tried again. This time the same buyers wanted assurances from their seller that an oven had been removed. Assurances were given. Then they asked for a safety certification. A plumber was called, the certification provided and it was sent. Then they asked that the gas line be capped.

Moral: try asking for everything you need at once. The plumber who did the certification could have capped the sodding pipe at the same time or, indeed, done all three when he removed the oven.

Once again no joy. Our vendor rang up to apologise and as I stood admiring the last part of a 15th century abbey standing on a street in Epernay he told me what he’d discovered. He’d been very diligent trying to find out what the fuck was going on and that is how I discovered all that. Apparently another difficulty the two at the bottom of the chain were having was that relations between them had soured so much they were only able to speak via solicitors, which did rather protract their conversations.

This is all as reported to our buyers so take it with a pinch of salt but clearly it was fraught. I was delighted to be able to leave things our vendors wanted for them. The people selling that flat to the first vendor are probably, as we speak, removing all the loo rolls, the light bulbs and curtains and anything else that’s not actually nailed down … or possibly, if I go off at a tangent here, they could go one worse … my son is no longer McMini. He is 16 and every bit the font of horrific knowledge you expect the average 16 year old boy to be. Today, he introduced me to a horrific concept called the Upper Decker.

An Upper Decker is when you poo in the cistern, for example, when you come to vacate a property that you rented from a particularly unpleasant and demanding landlord, etc … (I’m learning so many things about youth culture from my son). Personally I suspect nothing on God’s earth justifies the horror of an Upper Decker but because we are vile the McOthers and I have been making a lot of jokes about how an Upper Decker may well be on the cards for the people moving into that property because they were the ones who pressured us most over the probate thing and then, having pressured us to move fast, they are the ones who held the process up for a week while they bitched and bickered over things they’d have a small eternity to sort out.

I’d just like to cover my arse by saying I’m sure it’s not but it didn’t stop us speculating and giggling irreverently about it.

The other worrying part about trying to exchange was that I have a very ADHD brother who lives a vibrant and full life to the point where he does as much as I would normally do in a week’s holiday in one day (often one morning) and … well … he gets absorbed in what he’s doing so he doesn’t always answer his phone and he is not the most organised of people, indeed, I often wonder if, outside his profession, he could organise a burp in a carbonated drinks factory. He doesn’t answer his phone much … or at all to be honest. And he has no answerphone. The whole thing was dependent on the lawyers getting hold of him each day to confirm that he was as happy to exchange and this, for me, was the toe curling, nerve wracking, the-stress-of-this-is-going-to-cause-my-untimely-death part of it.

This morning, we tried again. It was the last chance as our vendor was worried they would have to renegotiate their mortgage if it failed. I wasn’t holding my breath and wasn’t sure they’d get hold of my brother, I rang my sis in law who got onto my niece who told my brother to turn his phone on. Strangely, a few seconds after that he said he was around waiting for the call and all was well. A few hours later I was gobsmacked to discover we were over the line. We have exchanged on Mum and Dad’s house.

Except it’s more than Mum and Dad’s house. Yes, it’s not my house. It’s not the house I chose, but it’s where I grew up. They bought it in 1972 when I was 4. We moved in in 1974 when I was 6. It’s been in the family 52 years and the family, or part of it, has been living there for 50 of them.

I’m 56 and it’s been in my life for 52 of those years. In short, it’s been part of my life.

For all my life.

How does if feel?

I’m not sure.

I’m on the road right now. When I heard the news I sat down on a carpark wall in Mersault and cried. Half of me was desperate to sell, desperate for exchange, desperate for closure, to move on. The other half of me, the half that grew up in that house, in Sussex, loves that house and doesn’t want to let it go and was desperate to hang on. Perhaps if we’d inherited any money at all I might have. But we have £700 left and that’s of £100,000 my brother and I put in to pay Mum’s care fees about this time last year.

It’s like I’ve slipped the moorings of the first half of my life and I am drifting gently away from the quay, into the current to take me away from safety, from all I know, to who knows where …

It’s … weird.

But people are with me. People I love. It’s going to be OK.

I couldn’t find a picture of a ship and a quay so this picture of a hot air balloon I took tonight will have to do

The thing that’s strange is that the further away from my parents’ deaths I get, the more I want them back. Except I don’t because at the end they were suffering or, in Mum’s case, about to. But as I drift away from the quay that was the first part of my life and the figures standing there get smaller and smaller, I begin to remember them as they were before they became ill. In the wine shops in Epernay, I was looking at some widget and suddenly thought it would be a great present for my Mum. It’s a different feeling when you move from the realisation that she wouldn’t know what it’s for anymore, to thinking that she’d love it but that she wouldn’t want it because she’s dead.

My lovely cyber friend Jim Webster once said to me that when they die and all the pain and the sadness is gone you do get them back. And I suppose this is what’s happening. I have been missing the people my parents were for years. The difference is that for most of that time they were still alive. Now they are both dead, it’s easier to remember them when they were still the glorious, larger-than-life personalities they were.

I love Sussex. I love the downs. I don’t want to leave. But in some ways I have been privileged to be there, drink in the views, the sea the Sussexness of it all once a week, every week, for 10 years when I wouldn’t normally have done so. Were my parents healthy, those weekly lunches wouldn’t have been de rigeur.

Yes, I’d have loved to spend a week at the house I grew up in with the McOthers visiting all the roman sites in Sussex, or Arundel Castle … or Goodwood Festival of Speed. Or taking the McOthers to see the Victory at Portsmouth, which is brilliant. But the beds there are horrific, so we never did. Maybe we will do that one day, from a base in a decent hotel. There’s stuff there I’d love to share with the McOthers because I know they’d love it.

Later, maybe.

So how does it feel? Bittersweet. I guess am standing on the brink of the rest of my life. I dunno where it’s going to go. But there are people with me, so with any luck it’ll be fun.

 

8 Comments

Filed under General Wittering

Tagged as , , , , , , , , , ,

15 Jul 2023 · 12:23 pm

Modern life is rubbish!

This is a blog post I wrote a couple of days ago. I’ve wrestled with my conscience as to whether I should actually post it. Mainly because it’s only going to worry people. I promise we’re all OK, but I do need to vent sometimes. This, being my blog, seems as good a place as any to do that. So it comes with a <rant mode> warning. Naturally, it’s written with a mental voice I use specifically for ranting which sounds like John Cleese doing Basil Fawlty going off on one. If any of it makes you laugh, that is the correct reaction. It is meant, foremost to amuse, but also to inform a bit in that it does genuinely feel like that sometimes.

Since the entire tirade genuinely reflects the way I felt at the time I wrote it, I think that, in the interests of full transparency, I should publish it. And also because I haven’t written anything else, so here it is.

[Rant mode] Modern life is rubbish!

A famous Blur album from the 1990s but also, sadly, very true for me. Or perhaps if I’m honest I should say, I am rubbish at modern life.

Aroogah! Aroogah! Whinge warning!

OK so I’m going to go on a teeny bit of a rant here, because in many respects, I’ve had a pretty rough time of it lately, and since this is my blog, I can sodding well do what I like. But I have a burning question right now and it’s this.

Why am I so unsuited to modern life? Because despite having been invited to sit the mensa test, it counts for zilch since I’m as thick as pigshit when it comes to certain, more mathematical strains of logic. I write numbers back to front and upside down (and add them up that way too) I often mange to look up completely the wrong hymn in church—because I read the number back to front—and my organisational skills are negligible. I couldn’t organise a fart in bed but the most galling thing is that despite knowing this, I still haven’t hit on a way to learn how to be organised. It just … doesn’t.

Then there’s the Mum stuff. The perfect storm of every single thing at which I am shit. I have skills. Are they any use to me for this? Of course they’re fucking not, I need the jot tittle and iota of formfilling and box ticking down pat and frankly, I suspect I’ve more chance of getting to the moon by putting car springs on my feet and trying to jump than I do of bossing that sort of stuff.

Mum’s mortgage money is dwindling astonishingly fast so I am trying to get some help from the NHS with her care costs. Yes, I know, I’m in the UK and the NHS is supposed to provide healthcare free to all at the point of need and yes, it does … except that some aspects of healthcare are more free than others. When you have dementia, it’s classed as a ‘social’ illness and dealt with by social services and presumably mental health services. It is a mental illness but at the same time, it isn’t because the causes of dementia are physical; strokes, bleeds to the brain, or neural diseases like Alzheimer’s, Lewy bodies, Motor Neurone etc which are all caused by physical factors, even if medical science doesn’t always understand why they happen, it’s a physical factor, not a mental one, which causes these outcomes.

Unfortunately, the NHS changed its classification of dementia back in the late 90s and for a whole swathe of people it was too late to plan for any healthcare costs, they just had to hope they wouldn’t need them. Worse, if those people did try to offload some cash after diagnosis, they stood the chance of being had up for avoiding care fees which is called deprivation of assets and is considered to be a criminal offence.

Some folks were lucky and they didn’t get dementia or they died fairly soon into the journey. My parents weren’t. One of the diffiiculties is that, for example, Mum has a house and the logical thing to do, from the point of view of death duties, would be for her to make over the house to us but continue to live there but even if she does this in a way that is compliant with UK tax law, then, since her dementia diagnosis, it would be a criminal offence because that would be trying to leave something to her children rather than spend the last of her and Dad’s assets on the healthcare she was promised for free until it was too late for her to do anything about it. Oh, and because the fact she and Dad have spent around £900k on care fees, to date—that’s right, close to ONE MILLION QUID—one million quid I didn’t even know they had, it still isn’t enough because the bastards want to make sure they strip those assets thoroughly, family antiques, pictures, the house, it’s all got to be sold to pay for care costs, or you have to make over the house to the authorities if they are going to pay (there may or may not be a cap on how much they can take for this. I think it depends where you are).

Yep, if you want to be tax efficient with your will, or try to avoid paying every last penny you have in care costs and give something to your kids … well … if you’re dying of cancer that’s OK. If you have a benign front temporal lobe brain tumour that presents very similar symptoms to the ones Dad endured, that’s OK, but if your affliction is associated with dementia then no. I’m sorry. If you try to do it, then, it’s a crime. Remember people, the D in dementia stands for destitute, and as far as the state is concerned, if you’re not destitute by the end of it, they’ve done something wrong. You’re supposed to surrender everything to pay for your care fees, suddenly, it becomes an actual crime to leave anything for your children or grandchildren.

Because we’re lovely compassionate people here in the UK and when our government screws over our citizens it likes to do it properly. Dementia isn’t a long grinding and hard enough road on its own, oh no, the government and the NHS like to ensure they make it as shitty for everyone concerned as possible. Why help one dementia patient when with a few deft tweaks to the care system, you can ensure there are more and double the assets you strip from the afflicted. Twice the money. Chancellor rubs hands together. Excellent.

As you can see, I’m not bitter or angry about this. Not at all.

Seriously, though. I genuinely don’t give a shit about my inheritance, that’s gone, although I do care about my brother’s half and that he gets nothing as well. What does make me angry is that it’s cost me pretty much everything; the never ending, grinding awfulness of it all has sapped me of any meaningful ability to write books and with that my purpose. It’s cost me being a decent mother, it’s cost me being an attentive wife, it’s cost me keeping in touch with my friends and wider family because it’s such a massive drag on my mental energy that I can only just keep in touch with a few folks. I guess we could just stop with, it’s cost me my happiness in many respects, or perhaps my contentment because in terms of stress, time, sadness, love, pain and god knows what else, it’s blown away any semblance of concentration and mental capacity I had (yes! Stress gives you brain fog, who’d have thunk it). It’s cost my husband and son because they feel it too, and they’ve seen me cry, many times and in my son’s case, at far too young an age. It’s cost my brother and his wife and my nephews and niece just as much.

I fucking resent the price we, and thousands like us, have paid because the illness our parents have endured has the wrong name. It does, indeed boil my piss. Mwahahahargh! I try not to think about it too much.

And fair due, when I say they take ‘every last penny’ they do generously leave you the last 23k. Except they don’t—and it’s not—because there’s a sliding scale of help beyond that and the full package doesn’t kick in until you are at £14k … which, to put this in perspective, is about 9 weeks of care fees.

Anyway, the amount of form filling! As you know, I am always a tower of strength when it comes to form filling, says she, with deep sarcasm. Did I mention that looking after Mum’s finances, healthcare and general wellbeing is a perfect storm of every single thing at which I am shit? And so was Dad’s. And it’s been going on for years and years, and years. And I am so, so fucking tired of my entire life being about trying to boss an enormous collection of all the things I am emotionally, physically and mentally least equipped to do. And Oh Lordy I took McMini to a consultation with a counsellor today and we fleetingly touched on the whole dementia dementor that is sucking away my life and I actually nearly wept. It caught me completely broadside because I thought I was through all that.

Not quite. Clearly.

The other day, I was listening to a programme on BBC sounds about dementia and they were so fucking upbeat.

‘Do you know carers everywhere save the government over £11bn a year?’ they said (or something along those lines). ‘Aren’t you all marvellous?’

Yeh the same way clapping people is so much better than giving them a pay rise and we don’t save them the money, they take it from us.

And I was sat there in the car, bundling along the M25 (it was flowing well that day) shouting,

‘No! We’re not fucking marvellous you absolute pus wangle! We’re fucking desperate, and lost and we have NOTHING left to give and NOTHING left to fight with! And no-one fucking gives a shit! And while I’m shouting at the windscreen like this, worrying the person in the car next to me,’ MTM turns, gives the nervous looking woman in the nissan micra a thumbs up and waves. ‘Can I just mention what it costs US? Everything. Fucking everything. Let me repeat that! It costs us every. fucking. thing. Our social lives, our hobbies, our capacity for coherent thought, our health and in some cases our sanity or our actual fucking lives.’

OK so I appreciate that sounds melodramatic but sadly, it’s true. One demented relative, and you are surrendering to years of sleepless nights and brain fog. Think new baby for years, and years, and YEARS until the lack of sleep kills you.

In a horrible irony, do you know what the result of that level of stress, for 15 years, was for Mum? That’s right. Dementia for her too. What a kindly joy! Thanks God you absolute get. The woman who said, ‘I don’t really care what happens to me when I get old, so long as I don’t lose my marbles.’ is losing her marbles.

Thank you, you to whichever clusterfuck of cucking funts made that decision back in the 1990s because thanks to your intervention she has, indeed, lost her fucking marbles.

Bastards.

Yes! I’m sure I’m entitled to all sorts of benefits and help and Mum gets it, what there is, but I’m too exhausted to look into it. And when I do, it’s for people spending 36 hours a week on care. If you have a part-time job that you can no longer do because of the strain of looking after your demented relative, that means you’re not eligible. If you worked during the school day, you’re not eligible because that’s not 36 hours. It’s a fucking shower! And I’m just running a house, a care team and a life from afar. I’m not even one of the poor bastards at home doing it 24/7 with no let up, no relief and no fucking hope. Waking up every hour all through the night and trying to persuade their demented relative to sleep because they are so … fucking … tired. People with dementia can live a full and happy life but it costs their loved ones everything. And nobody gives a fucking toss.

Then there’s … ugh … other stuff. Other stuff is a bit patchy to be honest. Everyone has a Draco Malfoy (look it up if you don’t know) and McMini is no exception. There’s a kid picking on him at school and for a while a lad who was a friend at one point was joining in, which made it extra specially hurtful. The ex friend has stopped now, thank goodness, but the other lad has continued. Luckily McMini, who was bullet proof on that score, and then very suddenly, not bullet proof, seems to have rediscovered his armour and ceased to care about the Draco Malloy in his life. Long may that continue.

Though the school is being brilliant it’s been tough for him. Hence the counsellor (psychotherapist who does counselling) and I arranged for us to meet to see if a few sessions would help. Things are a great deal better but I still want rule in or our whether or not Mc(not so)Mini might need a few handy coping strategies. Mainly because I doubt I’d be here now, in quite the same form, had I not had a lot of CBT at the beginning of this fucking dementia nightmare. And while he’s coping fine now, the kid who picks on him is still picking on him. So I set up an initial session to meet and see if the counsellor could help.

The first session was on Tuesday.

I forgot.

Jesus, Mary, Joseph and their fluffy donkey. Fuck me but I’m a fucking dickwad.

You know what. A few years ago I did an intelligence test, the result was a bit like a spider with 8 zones of intelligence and scores for each. Basically, I scored a solid top 80%-90% in seven of the eight areas. However, in one area—numeracy and certain mathematical logic—I scored below 20%. In an IQ test I scored one point off genius level (on paper, I’m well thick on screen) yet for everything that matters in wrangling my and my mother’s day-to-day existence my fucking enormous teflon-head brain is of absolutely fuck all use. The only thing my intelligence achieves is a keen awareness of how lacking I am in the one single form of fucking intellect I actually need. There are people out there with such severe cognitive disabilities that they are unable to live independently who are smarter than I am in the only area that anyone counts.

All my life I’ve railed against the stupid fucking bigots who say that the only intelligence that counts is mathematical intelligence and discount everyone else whose abilities aren’t a carbon copy of their own as ‘stupid’ because they’re too unimaginative to see the worth in any other kind of intelligence. I heartily loathe those people who aver that only one kind of intelligence is the arbiter of all intelligence and that without it you are thick, much as I heartily loathe the way the morning people have managed to fit the entire world to the way they function and have convinced us all that being a night owl (a logical evolutionary step to ensure some of the tribe was always awake to keep watch) makes you some kind of morally bankrupt deviant.

Sadly, modern life and educational standards are set up for mathematical logic, and nothing else, and it’s amazing the number of people who, when I suggest that it’s possible to be intelligent without being mathematically intelligent, will agree but then basically say, no. Engineering and construction and most stuff runs on maths or is designed using maths they argue. Therefore our world is built on maths and it is the apogee of all intelligence. I completely get that. I get that it’s important.

But we don’t all need ALL the maths to just … you know … live.  I mean, for starters, if everyone in the village has one kind of intelligence and is brilliant at building the bridges, who’s going to do the fucking cooking? Rishi’s barking plan about maths until people are 18 … well … it depends what they teach. But trying to get people like me to understand advanced trigonometry isn’t going to happen, no matter how many times you try and drum it into me. It’s just a waste of everyone’s time.

Nobody insists we all play an instrument to grade 8 level and shames anyone who can’t as an inferior or a second grade person. Some people aren’t musical. Nobody gives them any grief. Some people aren’t mathematical. Newsflash. That isn’t a fucking crime. Why this ridiculous insistence that mathematical intelligence is the only thing that matters? It’s bullshit! Surely, unless they want to be a theoretical physicist then, so long as a person can manage their finances, or parse a spreadsheet/find an expert they trust to do it for them that’s all they need.

Yes, we need to understand certain mathematical basics to get by but the way they go on. It’s like saying that only one colour matters or that only one musical note is important. And what will making people who are useless at something keep trying—and failing at it—do for their confidence.

‘You have so much to give, and so much talent but that counts as nothing because this one tiny facet of intelligence (that you’re shit at) is the only thing that matters.’

Is that a healthy message to send to our kids? From one who received it loud and clear at school throughout their entire fucking childhood let me assure you that it’s very much not.

The other day, when I forgot that session with the counsellor for McMini, I hated myself: truly fucking hated myself in a way I’ve managed to avoid since the CBT I did to deal with just this kind of negativity when I was first trying to look after my parents and navigate the absolute craptonne of admin they seemed to generate. Fact is though, I’m just a massive fucking white elephant. I know I am. Normally, I can look away and carry on living the lie that there is some actual fucking point to my existence but yesterday. No.

It’s so hard to be bright, really bright, in a whole arena of disciplines which, while perfectly valid, are discounted by modern culture as worthless, it’s even more frustrating to be smart, but, at the same time utterly, crushingly, mind-numbingly thick at the only subject by which the world gauges intellectual worth … and filling in forms … and admin. Oh I know it’s a them problem (and the fact that I care is a me problem) but it’s fucking galling. It’s not that maths isn’t important, it’s that not everyone is going to use it to an advanced level, not everyone will need to and more to the point, not everyone can. Making them try for years is just going to make them feel shit about themselves and as we all know, miserable people beget misery.

Actually if you want to appreciate what trying to force people to study something beyond their ceiling does just read this. Read this to see just how shaming people who are bad at maths makes them feel. Read this to see how giving people the impression they are stupid or somehow morally lacking, because they are less able at something you can do easily makes people feel.

It’s this idea that because some people are engineers or scientists and are using maths to define space and time, or build bridges, we should all be doing it. It’s like saying that every single person in existence should be made to write a book. It’s like saying, ‘oh we’re having a bit of trouble with the new covid vaccine, MTM why don’t you have a go?’ and being surprised and upset when I can’t crack it. It’s saying that we should all be carbon-copy geniuses (geniai?).  It is, quite frankly, a bit fucking mental.

Most of us need to do a tax return, manage a budget and possibly manage a business. Yes, it’s important to know that. We all need to. But just as important is showing people who are less gifted at maths useful stuff like the kind of logic required to parse a spreadsheet that’ll do that maths for them.

It seems a trifle unfair that the zone of intelligence, out of those eight, around which my entire chuffing life revolves is the one in which I sit in the bottom 20% of the population; remembering things, administrating financial matters, filling in government forms correctly, dotting every I and crossing every T as stipulated, and in a timely manner, not being able to see how my situation fits a standard box, sitting waiting on hold because I’m over thinking it.

On top of that, my startling lack of smarts—in the one area which dominates my existence—makes life such an uphill struggle that I have nothing left for anything else after I’ve finished with it all. That’s really where this whole sticking eyes on things cropped up. Because I wanted to write. NEEDED to write, but after dealing with all the shite, getting it wrong, doing it again, missing bits off and cocking it up, all while watching my father and then my mother slowly disappearing in front of my eyes; all while taking their hands and walking beside them as we made our way together into the dark … after that I had nothing left in the tank. But an eyebomb takes a few minutes, little or no energy. I still get to be creative and it cheers me up.

Hence the marked absence of any new writing so far this year. Or last year to be honest. Of course, that’s also the reason I’ve been concentrating on the eyebombing book. Because it’s a different kind of creativity and an easy win … except I did an event on Saturday and there was very little interest in it live … so to speak which was rather worrying after it looking like people were interested online.

This is the first book I’ve talked about on social media where people have demonstrably shown an interest but … The price was definitely too high. Nobody was countenancing paying £18 for the hardback and £10 was clearly too steep for the paperback too. I might try a smaller size and see if I can produce it more cheaply and charge £7 for the paperback and £10 for the hardback. I guess the trouble is that it’s still too expensive to produce a colour photobook for a price that anyone’ll pay. It may be that I need to aim it at a more deluxe audience … gulp … but then the photos should probably have been better. Yeek!

Bummer. It looks like I might have produced yet another turkey.

Never mind. I guess you can’t win ’em all… or any of them, it seems. I should give up already, but that would be easy, and I NEED to create things … and I’m pig-headed. Onwards and upwards.

[/rant mode]

Here’s something a little lighter …

Something for that person who has everything: Eyebomb, Therefore I Am

Picture of books about eyebombing displayed artfully

Step into a realm where inanimate objects come to life and a simple pair of googly eyes holds the power to transform the ordinary into the extraordinary. This book invites you to immerse yourself in the whimsical and hilarious world of eyebombing; that art of sticking googly eyes on unsuspecting inanimate objects to unleash the joy within.

As you turn each page, you’ll find yourself smiling at the quirky personalities that emerge from everyday objects ranging from lampposts and traffic signs to automatic hand dryers and even dinner. The juxtaposition of the ordinary and the unusual challenges societal norms, reminding us to embrace new or different things, and look for humour in the unlikeliest of places.

Whether you’re a fan of street art, a lover of comedy, or simply seeking a joyous escape from the mundane, this photo book is sure to leave you grinning from ear to ear. You might even end up stashing a pack of googly eyes in our own pockets and having a go at eyebombing yourself.

To find out more and be informed when it goes on sale, join my eyebombing mailing list by clicking on this link:

https://www.hamgee.co.uk/ebl

22 Comments

Filed under General Wittering

Tagged as , , , , , , , , , , , , , ,

28 Aug 2022 · 3:29 pm

Self Care, Hospital Care, Dementia Care

After last week’s rant, two things occurred to me; first that I probably needed to post this week as well, just so you know I’m alright and second; reading it back, I got the impression I might be sensible to do a little self care.

Self care is underrated.

The friend I go walking with one day a week was not around this week and as a result, I decided that, with nothing much else on, socially, this was the perfect time for a bit of self care. For this week only, I decided, Real Life could just do one. Obviously, I still went to Mum’s but the traffic was kind to me and she was in good form. I was also going to go to my metal detecting club meet on the Thursday but had a reprise of the lovely vertigo I’ve been enjoying on and off for a while. The rest of the week, I holed up at home and relaxed.

Self care measures included: writing, reading, going for walks alone, putting aside every single bit of admin and listening to music. We are also all building the same model ME 109 although we’re at different stages. I’ve made half the cockpit, McOther is painting his and McMini has pretty much finished his because he’s so patient … not. Mwahahahrgh. It’s been great fun though.

On the music front, taking McMini’s lead, I’ve recently signed up for Spotify since this seems to be the most straightforward way to listen to my vinyl records in the car. It’s what he uses it for too. Yes there are three people in our house and each one has a separate record player of their own. Jeepers we are such massive spuds. I also use it to listen to stuff that’s too obscure to source anywhere else – although Discogs is pretty good for getting hold of pretty much anything in that respect. So it was that I set about getting my library organised by searching out all those obscure things I don’t have, have lost or couldn’t track down.

About a million years ago I was sitting in a curry house and the background music was a Rolling Stones cover played on the Sitar. I thought it was brilliant and asked the waiter what it was. He was so excited that I’d shown an interest that he went and got the record sleeve, plus two more staff, from out back. They then explained, enthusiastically, that it was a guy called Anander Shanker (it turns out he’s Ravi’s nephew). A lot of his stuff is on Spotify.

What’s it like? Well, if the French electronica group Air added sitar to their stuff … something along those lines. There are also cover-versions; Shanker’s version of Jumping Jack Flash is genius and Come On Baby, Light My Fire is certainly a lot different from the Doors’ version. Next stop the original that Verve’s Bittersweet Symphony is based on by the Gary Oldham Orchestra. I had forgotten the name and I had to ask McMini for that one. He spoke about how he loved the bell at the beginning and it was lovely to see him discovering music with the same joyous enthusiasm that I had at his age. He is totally open to anything so as well as punk and thrash metal, he listens to military bands, bag pipes, Anander Shanker (of course) classical music, ancient ska, Finnish folk songs, electronica … all sorts.

After I’d added the original Gary Oldham song, or Snurds, in flight as I like to call it because if I play it, that’s what I see if I shut my eyes (The Pan of Hamgee whisking Ruth off from her palatial prison the night before the installation, for example). Spotify suggested all sorts of other similar things, and I liked the ones I … well … liked so I could find them again. This is where Spotify is good. I have about 9gb of my own music on my phone. It’s also on my iPad somewhere but Apple refuses to believe I’m not a pirate and has hidden it, only allowing me to play the handful of things I’ve purchased from iTunes over the years. The 9gb of music just sits there, invisibly, taking up space.

Now this is no longer a problem and Apple can ‘do one’ along with Real Life. I can listen on Spotify and the artist gets a tiny royalty for each listen in a way that they wouldn’t if I was listening to stuff I’ve bought on vinyl and transferred to my phone. Also, since most of the vinyl I have is no longer available new the artists get something, albeit a risibly tiny something for listens to the stuff I’ve purchased second-hand. I don’t like Spotify, but I do like that I can use it to fund my favourite artists simply by listening to them.

It strikes me that ‘responsible’ use of Spotify is all good, because it’s giving artists an income, however pissy that income may be, for listens they would not normally be paid for. It’s a pity Spotify don’t pay up front for a ‘new copy’ after every X number of listens, the way  some libraries do for ebooks. Either that or pay more per listen, the way libraries do.

I also discovered a craptonne of early Ska and some of the songs by the Petshop Boys which I haven’t listened to for ages because I don’t have them. Indeed I spent the entire journey to Mum’s this week listening to Paninero on repeat conjuring up an image of The Pan of Hamgee being chased which played on loop in my head. He’s wearing a 1920s flapper dress, beads and the most ridiculous blonde wig and he keeps appearing and then disappearing as he runs over a row of peaked roofs with what looks like the entire world chasing after him.

Yes, the sausagewright mentioned in Too Good To Be True has been found. Kidnapped, locked up and forced to make Goojan sausage she is pining for the fjords! She has agreed to make four sausages and then Marcella, the pirate has sworn she’ll let her go but now her captors are demanding more. She has been on a go slow, so they kidnap her brother — Burton Coggles — a quiet, dapper, retired gentleman who volunteers at the local library.

A suitable K’Barthan street scene … it’s really Arras Grand Place.

Unfortunately, no-one in Marcella’s gang, least of all her, realises that the thoroughly anonymous Mr Coggles has a secret alter ego as half of K’Barth’s most famous comedy duo, drag queens Phlange and Knutt. Bitingly satirical and very quick witted, they are not exactly popular with the authorities but are loved by K’Barthans and the authorities recognise that they serve a purpose, in poking fun at those in power in a way that let’s the locals let of steam without them doing anything to clutter up the place or disturb the economy like having strikes, riots, revolutions etc.

Phlange and Knutt being an act, and imaginary aliases rather than real beings, the Grongles don’t know who the people behind the act really are, and the artists, themselves, ensure it stays that way. And yes, they are based extremely heavily on two of my favourite comedy artists Hinge and Bracket. I can’t quite work out if Burton Coggles’ alter ego is Dame Evangeline Phlange, or Doctor Ariadne Knutt. Or indeed, whether it’s Dame Ariadne Phlange and Doctor Evangeline Knutt. Only time will tell.

The mystery to solve then will be a) where is Marcella getting the sausage/keeping the sausagewright? b) What’s happened to Phlange (or is it Knutt?) of Phlange and Knutt? and c) how will The Pan spring Phlange/Knutt and his sister from their prison, on the top floor of a warehouse. d) Why is he springing them? Because Marcella is working with a Grongle Captain and Colonel to become a pliant, malleable (for the Grongles) Boss of Ning Dang Po. Clearly, neither Big Merv nor The Pan (who is one of the first people she’d kill) wants that. But neither do any of the other ganglords it turns out.

More scenes from Ning Dang Po … 😉

Obvs at some point, The Pan is going to be pretending he’s Phlange — to act as a diversion and draw off the pursuit? That must be the bit I keep seeing with the roofs. Yes, the fight among the helium canisters will still take place. Obviously the Grongles will disapprove of Phlange but be even more pissed off with Marcella for disappearing her because the average K’Barthan in the street is convinced the Grongles have mislaid Phlange and there are riots and all sorts of other untidy shenanigans which interfere with the Grongolian owned parts of the K’Barthan economy.

The Grongles don’t like Phlange and Knutt but they dislike rioting and disorder even more. Hence the Grongle Captain will attempt to whack Marcella the Pirate and I think she will whack him and get a laser pistol as a result. At which point, she will meet his superior, oh no, not the Colonel Kay but General Vernon, who will evaluate her, decide she falls short and throw her off a roof in front of a petrified (but hidden) Pan of Hamgee. Lord Vernon, newly ‘elected’ party leader will be lauded for fixing all the trouble so quickly and be elected leader of the house in the K’Barthan parliament … although he might possibly get elected because his predecessor has presided over this and he uses it to his advantage, I’m not sure.

So, writing? Yes. I have made a lot of time for that. As you can see, I do now have some idea of where this one’s going and more to the point, where it’s come from. There’s a fair bit of primping and squishing about on things I’ve already done so they fit in the right places, which I’m still doing. Then I have to work out what scenes are missing up to the point in the narrative I’ve reached and then I can get going on the nitty-gritty. Will it come out the way I’ve just described? Of course not but those are the basic threads, how they are eventually plaited together is up to the characters involved, I’m as in the dark as you until it’s written.

Other self care activities. It was McOther’s birthday and he does a lot of wine tasting. Everyone turns up with a nice bottle, covers it up and then they all try it and try to work out what wine it is. It’s fiendishly difficult but fun and the trick is more about knowing what’s in another person’s cellar than actually tasting the wine. I think I mentioned this a few weeks ago, and that I have been knitting some bottle covers to replace the dodgy socks McOther and friends tend to use to cover up the labels. Anyway, I managed to complete five; one for a friend who was attending and four for his nibs for his birthday.

To my delight, both recipients appeared to be genuinely pleased with them. Alongside, I gave McOther the usual lame presents; peanut butter cups and wine gums because he’s a little bit addicted to both but he was clearly chuffed with the bottle sleeves, as was the interested friend, who was one of a group who came to dinner to celebrate with us, so I’m chalking that one up as a win. I suspect I will need to knit more of them.

On Saturday morning, in a nod to the admin, I sorted out my car insurance for the next year but then … a slight disaster struck. Mum.

Bruv has been staying over the weekend. At the moment the mortgage is on hold because he wanted to evaluate whether or not we should be moving Mum earlier. I genuinely think she’ll be ready to move in the next year or so (as in we’ll be able to move her without her really realising what’s going on) and so do the carers but I’m not sure it’s time yet. Obviously because Bruv has a bigger family and stays longer she presents a very much worse picture for him than she does for me, but she’s definitely getting there.

Long and short, she fell on Friday night — her bad knee gave way and the next morning, when she tried to stand, it was so painful she nearly threw up. She ended up going to hospital, where she is currently staying. They couldn’t see if there was a break or not from the X-ray because she’s so arthritic but the orthopaedic surgeon wanted to have an MRI or CT scan or whatever it is they do in order to try and find out for sure one way or the other.

Serendipitously, a geriatric specialist was there too asking her all the dementia questions, none of which she could answer except her name and that of the monarch apparently. If she got an official dementia diagnosis in passing, that would be the icing on the cake. It’s nice leaving this to bruv and wife although I’m not sure how long before I have to go down there. I’ll visit on Wednesday, anyway.

As I write we are waiting to see if she’s seen by a physiotherapist this morning—if she isn’t it’ll be Wednesday before she is—and also whether she gets the scans etc and they are able to find out more. Then it’ll be a cast or a boot and she’ll need to start trying to walk on it. They’re also looking at her knees. Not that they can do anything about any of it now because she’s far too demented to undergo an anaesthetic.

We’ve hummed and haad about finding her a place in a home short-term for rehabilitation but her care team can do that, themselves, and I suspect she would do better at home. Also unless we can get her into a forever nursing home and hope that she likes it so much she wants to stay, it’s probably not worth doing that. What tends to happen is they send patients to the nearest place with spaces and that might be fifty miles from her village and her friends so it wouldn’t be any use.

So we wait …

It seems like a decent ward, and Mum is in good hands. Meanwhile, I learn that a week of self care is probably essential from time-to-time because I’m OK and without it, I think I’d be doing a lot more pointless worrying.

On a completely different note …

If you are looking to administer some self care yourself by reading for example … or listening, here’s something that might help; a free book.

Yes, Small Beginnings, K’Barthan Extras, Hamgeean Misfit: No 1 is free to download in ebook format from all the major retailers and you can also get the audiobook for free from my web store.

If you think that sounds interesting and would like to take a look, just go here.

 

 

10 Comments

Filed under General Wittering

Tagged as , , , , , , , , , , , , ,

20 Aug 2022 · 1:34 pm

The dementia life sentence …

For some time now, I’ve been putting off writing anything here. Mainly because I need to write about Mum but I’m just so burned out with the whole dementia circus that when I sit down to do it, I can’t. I know I’m in trouble, but there’s nothing I can do, no way out, and for the next ten years, I know it’s just going to be more and more of the same grinding awfulness. Wednesday’s visit to Mum was lovely and she was in great form, so it’s not like there aren’t good days. It’s just that I’m in the kind of bad place, mentally, where I’m having trouble seeing them. I think this is because there is too much Mum stuff and it’s time sensitive so I can’t spread it out.

Settling this next stage for Mum is dragging on, and on, and on, and on, and on. And I can see no end. And it’s taking everything, so I’ve nothing left for writing. I’ve hardly written anything in six months and that is not a recipe for happy me. There has to be writing, and right now, until the next year of the Plan is settled for Mum. There’s not.

Which means I’m as miserable as sin.

‘Last night, I dreamt that Mum had died, peacefully, in her sleep. My overwhelming sense was one of gladness and relief. When I woke, and realised it was all a dream, I was absolutely miserable.

How the fuck does that even happen?’

OK, so I’m putting it in quotes but it’s not really a quote, it’s what I said when I woke up on Tuesday.

A lot of looking after someone with dementia is wishing them dead before the grim bit starts and then feeling really guilty about it.

It’s not that I don’t love Mum. I love her utterly. It’s not even that I find her difficult to love the way she is now. Far from it! It’s not that I can’t enjoy her company the way she is now, again, far from it. We have really good fun some visits. It’s just that I miss real Mum so much and I want her back. And I know she’s frightened and I don’t want her to go through the scary last bit.

‘Please God spare her that,’ I beg.

‘Fuck off and do one, Mary,’ says God.

Mum’s been petrified of getting dementia all her life. Scared enough to mention it to me on numerous occasions. And now … I wish her a gentle death while she can still be in denial. I want her to die before I have to mortgage her house from under her, or move her somewhere else because we can’t afford the care anymore and there’s nothing else left to sell. And who knows, she might be find if she goes and lives with my bruv. It might be fantastic and we might end up wondering why on God’s green earth we didn’t do it sooner. But her family are her carers now and leaving them would definitely be a wrench. And I can’t write this stuff without crying, and I just can’t cry right now or I’ll be undone. And I can’t be undone. And I’ve cried so much already. I’m so bored of being sad and crying.

That, right there, people is my baggage.

Let’s unpack it!

Let’s not, I hear you cry. Unlucky. This is my blog and I can do what I fucking well like. Also, I’ve had vertigo for seven days so I’m not in the mood to be tactful, gentle, accommodating or, in fact, to be pleasant in any way. You have been warned.

Right then. MT pauses to put her rant goggles on. I’m going to rail at the system here. It’ll do fuck all good but it makes me feel better. Off we go.

What kind of person does that statement in the big letters up there make me? Probably a git, but mostly, just an exhausted one. If you are diagnosed with any form of dementia and you are unlucky enough to live in the UK you are absolutely fucked. You see, we have a national health service, but it’s chronically underfunded and has been by successive governments. Case in point, Doctors have had static pay or tiny pay rises for so long that, in real terms, looking at what they earn versus cost of living increases, they claim their pay has dropped by 30% in real terms. I can believe it.

The NHS is full of agencies employing other agencies, ‘to save money’. But agencies are a false economy. For example, say you need help after an operation. In the area where I’m familiar with the rates of car fees, the NHS is paying £25 an hour for the people who pop in twice a day to and help you dress and undress. A self employed carer will cost you £15. Agencies do the admin, so basically, the NHS is paying £10 an hour for admin for each patient. That’s because it looks cheaper on paper than employing a bunch of people to do the care and others to administer it all in-house.

Since it’s as cash-strapped as the rest of us, the NHS is always on the look out for ways to save money. One way is to discriminate against people with illnesses which are expensive or lengthy to treat. Come in Dementia, your time is up.

You see, there wasn’t much to do at the end of World War 2 except shag and have babies. There was a huge population explosion. Now all those kids are reaching the age where they are getting dementia. That’s a lot of people at once and that’s expensive.

What is the NHS response to this? Well, since Dementia patients are expensive to care for and successive Governments were refusing to find it properly, the NHS dumped its dementia patients. They now refuse to provide ongoing care to the majority of dementia sufferers. Occasionally people take them to the High Court and they are forced to provide ‘free healthcare at the point of demand’ for a dementia sufferer the way their charter says they’re supposed to. But it takes many years (1998 – 2011 in the case of the lady I know) and more energy than most people who are trying to look after someone demented have to spare. The only people with access to dementia care from the outset are the lucky ones who have no savings, and even then it’s a post code lottery.

Drugs? Yes, they’ll give you drugs (much good may it do because did I mention that THERE’S NO FUCKING CURE!) Stuff you really need, ie support and care? No.

Dementia is the long slow death of a thousand tiny cuts. It takes years to die of dementia. Bit by bit, little tiny piece by little tiny piece, you fade away. Worse, because the NHS made this decision not to deliver ongoing dementia care relatively recently, the current generation of dementia sufferers with more than £14k to their name have not taken out insurance, or planned for treatment. So we have this broken, semi-American system where half of it is free but there’s only nascent insurance to cover the other half. Indeed, if you have dementia, and savings, you will need a craptonne of money and there is NO financial advice about managing this. There are millions of people in the UK facing this every day and you cannot find financial advice for love nor … well … yes … money. All you can do is find folks who will help you with the various aspects, mortgages, care annuities etc.

Unless a person with dementia has less than £14,000 in the bank, the only available care for them is what they can pay for, or family members. Bear in mind, I have admitted that I’m struggling to cope with Mum’s admin, being a mum and trying to write the occasional book. But I am not trying to look after a spouse with a profound cognitive disability at the same time. Mum was.

If you look at guidelines for carers, what their hours should be, their rest breaks etc, you will see that there are laws about this. The tacit implication of that is that Government acknowledges that being a carer is not a job one person can do alone 24/7 year in, year out with no respite. Ever. Except that they clearly think that if you have a family member with dementia you have some magical bionic transformation because that’s what the family of every single dementia sufferer in the UK with more than 14k in the bank is expected to do, until the money runs out.

If ever there is a group of people who need help facing their illness it’s dementia sufferers and their loved ones. Dementia ravages everyone involved. It’s horrific.

If ever there was a group of people with less help available facing their illness, it’s dementia sufferers and their loved ones. Ha fucking ha.

Except that looking after a demented spouse with the risible amount of help available can and does kill some people.

I guess what I’m saying here is that Mum’s dementia was almost certainly brought on by the stress of looking after Dad, with his. Old people are proud and they won’t accept help. In the case of Mum and Dad, at the beginning, I suspect they also knew what ‘helping’ would do to me and my brother, and as loving parents, they tried to protect us from that for as long as they possibly could, which turned out to be until Mum’s health broke down in 2015. We finally managed to get her and Dad live-in care in the Spring of 2016.

Right now, this seems to be the story with anything in the NHS. Once again, it’s a false economy. Like their bizarre insistence that I could not have a knee replacement until I was 60, meaning that I now have arthritis in my other knee and both hips from walking awkwardly due to the pain. Even if they can fob me off about the other limbs when the time comes, they’ll still have to provide me with a wheelchair, painkillers, crutches, someone to help me wash and dress every day … I doubt a couple of years of that are cheaper than a 12 grand knee replacement, yet the whoever is in charge of this stuff at the NHS is clearly convinced they are.

Going back to dementia. You might ask why I think this is unjust. Why I believe people deserve to keep their life savings.

Well, first of all, while I know and understand the fact that by the time I’m elderly, any kind of healthcare will be a luxury for the rich these people don’t. They were led to believe they would pay taxes and that those taxes would buy them free health care and security in their old age. They were led to believe, all their lives, that Britain was a welfare state and would remain one. I think one of the cruellest things about dementia is that, unless you’re lucky enough to die of something else first, it takes years and years to die of it. A dementia diagnosis in the UK is a fast-track to slow-motion destitution and death.

If we really have to punish people for saving and putting money aside for a rainy day, then, for the love of god, can’t they keep their house? It’s the saddest thing that, from the Hippocratic Oath/compassionate medicine side of the equation, it’s well known that a dementia sufferer will do better in familiar surroundings. The nature of the disease is such that usually, they have to go into a home at some point, but in the initial and middle stages, a change of surroundings will confuse them more and accelerate their condition.

As I understand it, this is a known medical fact.

Her knowledge of this is the reason why Mum didn’t downsize when Dad was ill — because it would confuse him — and of course, by the time Dad finally died she was too demented, herself, for us to do it. This being the case, you’d think that there would be a mechanism for a person with dementia to stay in their own home, wouldn’t you? But oh no. If a dementia sufferer is living alone then, once their money is gone, they must sell their house and everything else they possess to fund their care fees. They might have paid taxes and worked all their lives but they must now surrender the money they’ve saved. The money they’ve already paid tax on so that they could have free healthcare.

Obviously having dementia isn’t shitty enough, oh no, the NHS the Government the local authority or whoever the fuck it is sure as hell isn’t going to look after any demented person until they’ve been stripped of everything.

How is that humane? Every step of dementia care in the UK right now seems to be along the lines of, ‘How can we make it worse for them? What will make them suffer more? Hey look! This one lets us shit on their families as well! Good-oh! We’ll do that.’

Worse, it’s not just cruel, it’s dangerous. Because dementia care is a social services ‘problem’ and down to your local authority, it means that whether or not there’s a place in a secure home for you is very much a post code lottery. Here in Suffolk, there are people who have to travel 60 miles to Peterborough to visit loved ones because that’s where the nearest secure dementia home with a place was situated when their loved one needed it. There are other people who regularly pick up demented wandering parents from the police station after they’ve been found wandering at night … because there isn’t even a secure place for them 60 miles away in Peterborough.

Luckily for Mum and Dad, Sussex contains the south coast and towns like Worthing which are still home to large numbers of elderly people who appear to have gone to them to die and then forgotten what they went there for. Despite being a bit more hip and nascent Brighton spill-over, Worthing is still well supplied with elderly people and care homes. Even so, it took three weeks to find a place in a secure dementia home for Dad while he was in hospital, and that was only because we had already started the process with Social Services and they were already looking to place him. We were incredibly lucky.

People with dementia need secure care, or an adult living in with them because otherwise they do weird things; they go walking along the A14 at four in the morning in their pyjamas because they think it’s day time, they drive down streets on the wrong side of the road, they go ‘home’ to someone else’s house in the middle of the night because they used to live there and they’ve forgotten they don’t any more, they get confused at road junctions and end up driving the wrong way down a dual carriageway (these are all things demented people have done and in all but one case, they are the demented loved ones of people I know). And sometimes, when they do these things, especially in cars, other people get hurt or killed. It’s not just the carers who are broken apart.

Cutting out dementia care isn’t only ruining the lives of those who suffer from it and their families, it’s harming a whole host of invisible others.

I wish I could say that government or anyone anywhere gave a flying fuck about any of this, or us, but it isn’t true. I’m just railing into the wind. I know that … but it makes me feel better.

Thank you for listening.

On a completely different note …

If you want something to take the taste away from my insane rantings, there’s always a free book.

Yes, Small Beginnings, K’Barthan Extras, Hamgeean Misfit: No 1 is free to download in ebook format from all the major retailers and you can also get the audiobook for free from my web store.

If you think that sounds interesting and would like to take a look, just go here.

 

 

9 Comments

Filed under General Wittering

Tagged as , , , , , , , ,