Tag Archives: dementia

26 Dec 2023 · 7:52 pm

The end …

This is weird. I’m posting to wish everyone a happy Christmas, although it’s so long since I’ve written anything that there may be no-one here!

But also because, if anyone is still likely to read this, there’s something you need to know. You see … my mum died.

Yep, exactly three weeks ago yesterday, my brother and I became orphans. It’s sad in a lot of ways, obviously, but strangely, the main thing about Mum’s death so far has been that it really wasn’t sad. Poignant? Yes. Beautiful perhaps, and moving, oh yeh. But sad? No. Not really.

Mum on honeymoon taken by Dad.

I’m going to tell you about it, partly because it always sets my head straight to write these things down and partly because there’s an outside chance it might help other people.

It all started on Saturday 2nd December. The carers rang to say that Mum seemed groggy and was looking a bit blue. We agreed that she probably had a chest infection. I told them that Mum had left instructions for this and that she would want to be at home. They understood but also had to walk the line as professionals so they dialled the out of hours doctor service at 111. 111 sent a paramedic who wanted to take her to hospital.

The carers rang me and put the paramedic on so that I could say no. But when she spoke to me, she explained that Mum was not about to die but needed access to pain meds and antibiotics which she would not get until Monday and that while letting her die at home was one thing, and perfectly possible if she was about to die, this wasn’t actually a life threatening situation. She totally got about Mum’s wishes, her own mother having been the same. It’s just that. In her view, Mum was going to get better, anyway, ergo denying Mum access to antibiotics for two days was actually just a bit mean.

So I let her go.

This is the bit where I experienced some of the crappy aspects of the NHS.

The paramedic with Mum told me that casualty wasn’t busy and that I would probably get a call by 2.00pm but if I didn’t to ring at five. In the event, I rang at 2.30 and got nowhere but that was fine, they’d said five so I waited and tried again then. I got through to a nurse who told me she hadn’t been allocated to Mum but went and asked the nurse who was how she was doing. Apparently Mum was through triage and in ‘major’ whatever that was. They were waiting for a doctor to see her a second time and she was settled and comfortable. I rang again at 7 and failed dismally to get anywhere. Actually, I failed to get anywhere every time but every three or four goes, I’d throw myself on the mercy of the lovely ladies on the switchboard who would try to help. A couple of times they managed to get me through to different people who could ask a nurse to find out if there was any news or look at a database, which did, at least, have the basics of were Mum currently was in the system.

Nobody would answer the phone without help from Becky and Wendy on the main switchboard who deserved a medal because they were fucking golden … and later, in the night, Jacky.

A bit like the bit in Red Dwarf where Rimmer says, ‘You can’t scare me I’m a coward! I’m already frightened.’

The only actual doctor I spoke to in that time was an arrogant bastard with the bedside manner of a particularly unsympathetic cyberman. I pity anyone in dire straits, in casualty, who got him. He told me to get off the line because he had an urgent call coming in. The fucking knocky prick. I asked him how I was supposed to find out about my Mum. He told me I’d have to go back to main. I asked what the hell was main? He said that was the main switchboard. I asked him how long he thought I’d been trying to get someone to answer the goddamn phone and why, having finally made this major breakthrough after twelve fucking hours, he thought it was fair to ask me to go back and start again (only without the swearing). He said tough and hung up.

So that was that.

I went back to ‘main’ and threw myself on Becky’s mercy (or it might have been Wendy). I explained that I lived two hours away that my mother was seriously ill but I didn’t know if she was just seriously ill, or dying and NOBODY WOULD FUCKING TELL ME. I told her I’d been trying to get news on Mum for nearly 12 hours, that she was a dear person but she had dementia so she might be frightened and confused and no-one she knew was with her, and that I’d been told she’d be there for a couple of hours … AND that, had anyone bothered to tell me how long they were actually going to keep her sitting around on her arse with … whatever it was that nobody would confirm or deny to me was wrong with her … I would have jumped in the car when it happened and been with her from about eight bloody hours ago.

Except that, also without the swearing. Indeed, I was actually really polite about it, but laid it on a bit thick because I did want her to hoist in that I was only asking all this because I was desperate. She managed to find a member of clerical staff in casualty who was prepared to answer a phone and able to access the database. She made me wait while she spoke to the woman and told her she had to talk to me. Then I was put through and I found out that Mum had been admitted with a chest infection and was now in the emergency level. I said nobody had called and this lady said the next of kin was listed as Dad. I said I was a bit surprised as he’d died three years ago and Mum had been to hospital since, and she said, get this, ‘Oh, I see. So you haven’t changed the record.’

I? That’s right. It was all my fault. I pointed out that I’d given the paramedic my number and she said that no-one had passed it on. Since she was actually prepared to speak to me and give me information, I didn’t get as antsy as I felt or ask her how come the database hadn’t been mentioned the other time Mum had been to hospital since Dad had died, or why this was suddenly my fault.

Finally at 9.00 pm I managed, with the help of Jackie, another lovely switchboard lady at the hospital, to talk to a nurse on the emergency floor. Mum’s nurse was on her break but this one was kind enough to go and find out how she was for me. She also apologised and said that I’d probably have to ring the following morning to get any sense out of anyone. She confirmed that Mum was admitted, receiving treatment, sleeping peacefully and in a bed. Yes it was serious but no it wasn’t life threatening. So there was that.

Mum in the pink jumper in the chair at the back celebrating, being 90. The reason all the other chairs look small is because those blokes are all over 6ft. My uncle there on the right, he doesn’t sit down, he folds up.

It took until 2 o’clock on Sunday afternoon to get proper news of Mum but at least they were nice about it this time. She’d had breakfast and was responding well to the antibiotics but would probably be going up to a ward rather than straight home. The nurse also told me that Mum had been sleeping most of the time so probably wouldn’t have noticed time passing or got bored and confused the way I’d feared. Her care team also said that. One of Mum’s lovely care team went in to see her and phoned me so I could have a chat to her, which was wonderful and a huge relief as she was very much herself and, if anything, a bit more switched on than usual.

I went down on Monday to see her. At this point we were still expecting to move her so I popped in at her house. The gardener was there and wondering what had happened so I had a chat to her and I discovered the carers had looked out some chicken thighs for Mum’s lunch on the Saturday so I cooked them in the oven for myself and roasted a bit of cauliflower. I decided I’d have cauliflower cheese next time I was down (Wednesday). There were quite a lot of chicken thighs but I cooked them all and gave the gardener some to take home.

When I got to the hospital, Mum was in a ward. And this is where the NHS was absolutely bloody golden. Hats off to Byworth Ward. They were lovely. Yes, as compassionate, kindly and attentive care goes they absolutely smashed it out of the park. The staff there were wonderful. Watching them look after some a lady with quite challenging dementia they were so patient and so sweet with her that it made me want to cry. When I arrived, the first thing they said was, ‘how lovely is your Mum?!’ the second thing they said was sorry for the way I’d been kept in the dark. They said Mum was knackered and sleeping a lot but that she’d been very chirpy when she’d arrived on the Sunday afternoon. She woke up enough to be pleased to see me and then slept most of the time but that was fine, because she knew I was there, so we just chilled together. I’d brought my knitting and spent a couple of hours hanging out with my mum, knitting, relaxing a bit actually, patting her arm every now and again so she knew I was there and chatting to her when she woke up.

The staff told me that my phone had no voice message and because it didn’t say it was me, if someone did ring and I didn’t manage to pick up, they couldn’t leave a message because it would breach confidentiality rules. This was absolute news to me so thanks O2 for your arbitrary decision to delete my voice message. I can only assume it got deleted when I renewed my contract but the Vodafone one never used to disappear so I wasn’t ready for that. Weird. I recorded an answerphone message as I sat by Mum’s bed.

One of the care team went in on Tuesday and I visited again on Wednesday with my brother. I made us a cauliflower cheese and added some macaroni, mainly so my brother would have something to eat for supper as he was staying over, but also because at 6ft 4, he’s a big unit, so he does eat a lot. Mum was much perkier but still a little frail and sitting in a chair by the bed. She was still quite tired and a bit confused, but the staff were lovely and she seemed cheerful, so I felt confident that she was in good hands.

My brother visited again on the Thursday and he thought she looked even frailer at that point but the prognosis was still that she’d get better and leave and certainly that if it went the other way, she’d be in there for a while before anything happened.

I cocked up Friday, so she didn’t have a visitor, and the person I’d arranged for Saturday was one of the care team and couldn’t make it at the last minute because one of her other ladies was ill and she had to stay with her. I made doubly sure someone was going on the Sunday and got ready to go down on the Monday either to visit or help her move.

Sunday morning, as I was getting ready to go warble in the choir at church, a doctor from the ward rang saying that Mum was very ill. I explained that I was over 2 hours away, 3 in that day’s weather and that my brother was 4 hours, how bad was it? Did we need to come? The doctor said it was a bit up in the air but that if she carried on deteriorating the way she had over night the outlook was not good. If the worst did happen, and I wanted to see her, I should come now.

I rang my brother who was about to attend his goddaughter’s confirmation in Wales and we decided that since he was outside the church, he’d better carry on with that and come after.

As I joined the M11 it ground to a halt. The whole journey was a bit like that. Oh and it absolutely pissed it down, it was more like driving a submarine than a car. I drove faster than I was comfortable with but I still didn’t exceed 60mph. It was that soggy and the roads that waterlogged.

A still from my dashcam in one of the clearer bits …

Luckily in the many bits where the traffic stopped, it was just caterpillaring as it slowed for patches of extra heavy rain. As I joined the M25 from the M11 the doctor called again to check we were on our way. I explained that we were and she said that Mum was fading quite fast. Which was a bit stark.

I thanked her and then remembered that I’d booked Mum holy communion, so I rang the ward and asked if they could get the chaplain to give her the last rites, instead, as it was important to her. They did and Mum was awake and conscious, and bless her heart, still thinking of everyone else first. She gave the chaplain a message to give to the ward staff. She said that her son and daughter were on their way and if she went before we arrived to please tell us not to worry because she’d be quite alright. God love her. I didn’t find this out until later but it was a wonderful thing to say and even more wonderful that after two years of not being quite sure, most of the time, what our relationship with her was (only that she loved us) that she knew exactly where I and my brother fitted in. They gave her a cross and taped it to her pillow. The chaplain sent an apology via the ward staff that they are all stamped ‘Bethlehem’ at the moment because it’s Christmas. It’s on my desk.

The cross …

There was a bumpy moment when one of the carers rang me. I was over the bridge stuck in a traffic jam near Clackett lane by this point, pretty much in the exact same spot where, three years before, as I sat in a similar traffic jam, the same carer had called me to say my Dad had died.

However, luckily, this time, it was just to say a group of them had arrived and would stay with Mum until I got there. The gods were smiling, the traffic kept moving and I kept creeping closer to the hospital. Would I make it? Would my brother? I had no idea.

The car park at Worthing Hospital is notorious for filling up extremely fast. On the Wednesday, when I’d visited with my brother, I’d noticed a spot where I could use the raised surface of speed bump to mount the kerb and get my car onto a small patch of grass, next to a wall where it was out of the way. Yes it would get clamped but it wasn’t actually blocking anything so I could Break The Rules to save time if I had to, without being a selfish bastard. There are advantages to driving a car the size of a peanut.

When I arrived on that Sunday afternoon, at 2.30, the car park was absolutely rammed. I didn’t even bother to scope for legitimate spots. I headed straight for my kerb mounting area only to find that there, right beside it, was a single, free legitimate spot. I flung the car into it and ran for the ward, saying a small prayer of thanks to the almighty as I went and then giggling because I remembered that Wendy Cope poem, ‘Jesus found me a parking space! Bang the gong and praise Him.’

The carers were there, I said hello and then I Did The Thing. Yes, like Dad, my poor mum had to sit through me telling her what a fucking legend she was and how lucky I was to have her as a Mum. And yes, I cried because … tension … and also relief that I’d made it to say good bye. And because I couldn’t help it. She laughed and said, ‘Oh Mary!’ and I laughed too because I was being a fecking eejit and we both knew it but at the same time, I meant it and we also both knew that because it was the last time I’d get to say it, it was important that I did.

So then the staff asked about treatment. Did I want them to give Mum more intravenous antibiotics? I had plenty of time to think because her next dose was due at 11.00 pm they told me.

‘Will it make her better?’

‘No, I’m afraid not. But some families prefer to have more time with their relative.’

I remembered how Mum had been when she’d had pneumonia in 2012. She’d told me afterwards, that it was ghastly and that she’d felt terrible and if Dad hadn’t needed someone to look after him she ‘would have gone then’. Her words.

‘Will she suffer, will she be in pain?’ I asked.

They explained that she would feel short of breath and feel tightness and pain in her chest but that she could have morphine for that. I remembered a friend once telling me that having pneumonia was like trying to breathe through a straw. It didn’t sound pleasant and I didn’t want her to have to put up with any more of it than was absolutely necessary.

‘So basically, are you saying antibiotics won’t do anything but she’ll just take longer to die, so she’ll be in pain for longer?’ I asked, just to check.

A beat. ‘Yes.’

‘Then, if it’s not going to help, that’s just prolonging her suffering. Please don’t let her suffer any more than she has to. This is about making her comfortable and relaxed. Plase stop everything that is extending her life and just carry on with things that are going to ease her pain or help her breathe.’

So they took out the drip, because it wouldn’t help her dry mouth and she’d be more comfortable without the cannula in. They kept the oxygen because that was helping and they told me they would give her morphine as soon as she or I asked. They said they’d carry on turning her because that would ease the pain and obviously they’d keep changing her pad.

She was breathing through her mouth and it was drying out. The carers showed me some ointment to put on her lips with a nice brush thing that would feel pleasant and explained how to wet the inside of her mouth with tiny bits of water from a cup, or a toothbrush. Then they went.

Mum wanted me to make sure that the people in the care team who joined her after she made her will got the same as the others, and after they’d gone, I promised her I would see them right.

She took off the oxygen line and tried it without for a bit but didn’t like it and decided to put the line back in. I helped her do that and they fixed it up for me so it was working, but at a lower pressure which wouldn’t dry out her throat so much.

She was very sleepy but would wake up for a few minutes here and there and I’d tell her that I loved her. While she slept, in case she was drifting, half awake, rather than sleeping, I’d reminisce about things we’d done as a family; holidays, day trips, parties and of course, the time she and I had turned out a perfect apple suet pudding together … on the kitchen work surface, because we’d missed the dish. And how my husband came in and caught the pair of us, crying with laughter like naughty kids, as we tried to fix it. Mum was holding the dish under the edge and I, with rolled up sleeve, using my forearm as a giant spatula, was attempting to coerce the pudding across the formica surface to the edge, the plan being that it would make a short fall into the dish, hopefully landing the right way up, without compromising its structural integrity.

It hadn’t really bothered to get light that day, but darkness closed in outside anyway. Mum slept more and was awake less as the day wore on. I kept getting the water wrong. I used the wrong cup and made her cough, then it kept running out of the side of her mouth, down her chin and onto her chest. So I spent a lot of time apologising that it must be horrible and cold and making jokes along the lines that I was a shit nurse and that I wasn’t going to be admitted into the Royal College of Nursing any time soon. She laughed at first and then as she became weaker, it was a smile and finally just an imperceptible lightening of her face.

At one point she tried to sit up a bit and speak, so I put my arm round her and propped her up so she could. She said, ‘I love you darling, I love you very much.’ I just hugged her and told her I loved her too and that she was brilliant. That was the last full sentence she said to me.

Her voice sounded incredibly croaky and I remember thinking that she must have a horribly sore throat and that I must step it up with the water, which I did. We had a bit of a giggle when they gave me her shepherd’s pie to eat because she was too weak to swallow safely. I went to the loo and when I came back one of the nurses had left some packets of biscuits for me. They got the tea trolley in and gave me a cup of coffee. They were absolutely lovely to me (and my brother when he got there) as well as to Mum.

Mum was very peaceful, the staff remarked upon how relaxed and unafraid she was. They’d given her a little cross when she’d had the last rites or Extreme Unction as I prefer to call it because that sounds like some kind of superpower and is much funnier. I kept doing the water thing, at first asking if she wanted more each time she woke up and waiting for the, ‘yes please,’ but then I just put it into her open mouth with the toothbrush. She would usually suck it but towards the end she hadn’t the strength to do that. picture of the south downs dappled with sunlight and shade

My brother arrived and she tried to sit up a bit. I think she wanted to say the same thing to him as she’d said to me. He doesn’t think so, but I do. I missed my cue though and didn’t twig and pass it on for her. Mainly because I thought she was also in pain, which my lovely bruv thought, too, and I was concentrating on that. I suspect she had lost her voice by that time. I took her hand in mine and asked her to squeeze if she wanted morphine. She did. So we got some for her.

We held her hand, and stroked her face and told her we loved her, did the water thing and the lip stuff and chatted to one another. By 1.30 am, my brother suggested that we go back to the family home and get some sleep. I didn’t want to leave her but she seemed very peaceful, her breathing very regular, and as my brother pointed out, if it took a while and we were with her the next night, we’d need some proper zeds in for when it really mattered.

We consulted with the nurses who said it would be a sensible decision and that’s when they passed on the message she’d given them, via the chaplain, that we were not to worry if she died when we weren’t there.

There were some other quite challenging patients, people with Alzheimer’s with disrupted sleep patterns and I explained that while I had every confidence that they would make regular checks on Mum, if she was in pain and called out, they might not hear her straight away, or they might be with one of the other ladies and not be able to come at once. We agreed she should have some more morphine as that would see her through until 7.30 am and we’d aim to come back then.

Sometime around five they turned Mum and one nurse went off while the other primped her pillows, did the water in the mouth thing and made sure she was comfortable. She noticed Mum’s pulse was quite weak so decided it might be time to call us in. She went to get the other nurse to see what she thought and when they both came back, Mum had died.

Sunrise Over West Sussex, 1996 by Christopher Aggs, Worthing & Southlands art in hospitals project

We went into the hospital to see her, and I dunno, give her a hug one last time while she was still warm and it felt as if there was still someone there or at least, hovering close.

It was 11th December.

My brother and I spent three days at Mum’s house, going through her stuff. We did the desks first, which was hilarious. Mum had kept all our school reports and we found all his letters home from boarding school asking why I never got a star at my school, ‘Mary, you got full marks for that test but your handwriting is too untidy to give you an A so I’m afraid that’s an A minus, no star for you this time.’ (Or any other fucking time to be honest because my handwriting was always too messy for me to get an A. But that’s what school was like in those days. Luckily the only people who didn’t value the neatness of my handwriting over what I actually wrote were the examiners who marked my O and A level papers but I digress.)

We also got very giggly about Mum’s photos, we used to have to wait ages for her to take one and then she had a tendency to line it up wrong, that was mostly the camera rather than her but bless. And then we had an old friend round for dinner. It was interesting trying to cook vegetarian, because though my brother is, I’m not at all, but we ate a lot of roast veg and we had cheese and eggs with us so all was dandy … and we’d gone down there equipped with wine, which was great.

It being Christmas post, there was fuck all I could do about telling anyone by that time other than phoning a lot of people, including the local undertakers who knew both my parents well (Dad was church warden and Mum did the flowers) and who are lovely. Turns out there is a new vicar, who comes over as one of those rather difficult Christians who’s rather big on the ‘thou shalt not’. How he’s ended up at an inclusive church with its roots in the Oxford movement is beyond me but hey ho.

Luckily Mum was too infirm to get to church by the time he arrived and he never visited her, so he’s no clue who she is. As a result, he won’t be having any input into her funeral other than issuing the odd bizarre diktat to make sure we all know that the church building belongs to him and he’s in charge. The rest of the team are as lovely as they ever were. They quite clearly loved Mum to bits and it’s one of them who is doing the service. So that’s grand.

So there we are…

Looking back on it, there’s a waiting phase before death, a kind of state of grace people go into and if I’d thought about it, I’d have seen that Mum was in that on the Wednesday, I’d have known, and maybe visited on the Friday, too. Maybe … I dunno.

Am I sad? Well … yes but also … no. My overwhelming emotions are gratefulness and joy that I had such lovely people as parents. Mum was totally OK with dying. She’d told me less than five weeks previously, a propos nothing much, that I did know, didn’t I, that if she died, she’d be quite alright and I was not to worry. Other good bits … having been really quite batty for a week or two, she’d been very switched on for my last five visits. And even when batty her perssonality and generally lovely demeanour was unaffected.

Regrets? Not really, I wish I’d got the cue to ask her if she was trying to tell my brother she loved him, and I regret that my last two visits to her at home I was running round like a blue arsed fly, first showing some people over the house, then with the photographer (both times pretending they were surveyors come to look at the roof). I’d been going to make sure that on the last visit I really made up for that, but she was in hospital that week.

The fact is, Mum was about to leave her home forever and go to Shrewsbury, because it was time, and because we’d run out of money and had nothing left to pay the care fees other than the house. Mum and Dad’s furniture was all brown stuff and is therefore worth about five pence a pop if that. If we’d sold everything in the house, we might have covered care fees for a week or two. Instead she died while she was still living in Sussex, in the same house (even if she wasn’t there at the time).

Other positive things … Well … the move might have worked, but if it hadn’t it would have broken my heart as well as Mum’s. I’d have had a hard time coming to terms with it, even though there was no other option. As it is, I didn’t have to break my word to her. I didn’t have to move her. I never had to hurt her and I never have to worry about her any more. We get to do her funeral on home ground, where the highest numbers of the people who knew and loved her have the easiest access, if they want or are able to come and with Britain’s loveliest undertakers. I am incredibly grateful for that. And although she was still living in it when she died, we had conditionally accepted an offer on her house, which might help hurry up the paperwork.

It doesn’t really feel real. I suppose it won’t for a bit. But it did feel peaceful, and full of love and right. For the first time since 2012 I can say that I know, categorically, that both my parents are absolutely alright. That’s about the best Christmas gift of all.

Meanwhile at home, I’d bought a handful of presents but otherwise there’ve been no presents, no cards, indeed, not much of anything as we were busy taking anything of value out of the and into storage. We’ll have to put it back to get it valued for probate at some point but at least, for now, it’s safe. And all the Christmas malarkey? Well … there were some crackers in Mum’s cupboard, so my brother and I had a box each. I sang in the choir for midnight mass and we relaxed. McOther gave me a book to wrap up and put under the tree for him. He’d already given me a fitbit and McMini had already spent his Christmas money on stuff that arrived by post the previous week. He received a hefty wodge of christmas money from his grandparents but that was it.

When it comes down to it, all the gifts and the trimmings and the shit aren’t really so desperately necessary to make it work. It seems the Beatles were right. Love is all you need.

And on that rather schmultzy and trite note. Happy Christmas … a day late … because … this is me writing this, after all.

The end

Congratulatinos if you’ve made it this far. Weighing in at a hefty 5k, there are novellas out there and entire film scripts that are shorter than this post.

If you want some Christmas books, I’ve two available for your delectation; one reduced drastically to 99 American cents or British pee and another free. You can find them, in ebook or audiobook format until December 30th on this here page here:

https://hamgee.co.uk/christmas https://hamgee.co.uk/christmas

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Filed under General Wittering

Tagged as author blog, death, dementia, dying (not in comedy), M T McGuire, off topic, registering a death, sad

21 Oct 2023 · 12:00 pm

Balls … all of it.

Well, it’s been a long time and I suspect most of you have wandered off, assuming I have disappeared off into the ether.

Nope, like a bad smell, I never go away, I linger. I have just … yeh well, to be honest I’ve completely lost the plot. I wouldn’t say I’m actually burning out yet but let’s say … we’re on the red line and there’s definitely an alarming aroma of burning oil and hot metal. Hence my stepping back. So having not blogged for a long time it’s time to catch up. Yes. You know what you’re going to get now, don’t you? That’s right. An entire sodding book. Mwahahahrgh. Jolly dee then. On we go.

You want to know how my life’s going right now? Here’s how it’s going.

A few days ago, as I was walking up the garden path, minding my own bleedin’ business when a sleepy wasp fell out of a tree and landed on my head, at which point it got stuck in my hair and the little bastard stung my face. Worse, the breeze kept blowing my hair, plus—now incandescent—jabby stingy wasp, back at my cheek. As I flapped at my hair to try and keep the wasp off me, and at the same time, shake it free, I inadvertently batted my glasses into the shrubbery. Then of course, I couldn’t find them because I wasn’t wearing my bloody glasses. Luckily McOther heard me effing and blinding, took pity on me and found them for me, although he had to put on his reading glasses first or he wouldn’t have been able to sodding see.

Finally, after repeated bouts of ‘the Wasp Dance’ the pesky insect in question fell out of my hair and landed drunkenly on the patio. I’m afraid I was very angry with it and trod on it.

Welcome to my world. Shit like this happening the whole. Fucking. Time. Shit so fucking bizarre you couldn’t make it up; day, after day, after day. I really should write more of it down.

So that’s set the tone. Now you know what you’re in for with the rest of this. Mwahahahrgh! I can’t say my life is lacking in comedy it’s just that it’s the kind of stuff that, if I put it in a book, would have reviewers saying it was too slapstick and unrealistic to be true.

Mmm.

The evidence would suggest that, here at McGuire towers, we are some kind of fucking masochists, we have had the fullest room in the house re floored. Why the fuck did we do that? This has involved us moving shelves, about 300 books and about 8,000 LPs a table, a sofa, a doll’s house, a printer, a LOT of curtains and Lord knows how much other shite into different parts of the house.

When the LPs are leaning against the wall along the length of 3 metre room double thickness, you know there are rather a lot of them. Said room is also full of boxes of books, tables, there’s a doll’s house and all sorts of shit. Not to mention a sofa blocking the door so you can’t actually get into it and a giant set of shelves all but blocking the hall.

The room being re floored is also a main thoroughfare. Think, central hall. So to get from most of the house to the kitchen we have to go up the stairs, along a corridor, and down the back stairs into the kitchen instead of along a hall and through a room, because we can’t walk on a newly tiled floors because … glue.

To get to the utility room and the freezer we have to go outside into the pissing rain, round the side of the house and in through the back door. To put the cat to bed … well … he’s having to sleep in another room. He’s doing really well—because cats don’t like this kind of stuff but he hasn’t run away—although I suspect he’s not enjoying it. There were many set backs. It was meant to happen two weeks ago but other jobs over ran and the chap couldn’t get to us until this week.

On the up side, we can access all rooms without having to actually climb in through a window. Frankly, the state things are, I call that a win.

Unfortunately, having the entire house becoming more and more discombobulated over a period of several weeks (because that room has taken a long time to clear because it was packed well above it’s plimsoll line with shit, anyway) has left me astoundingly arse about face. I have no fucking clue which way is up. Or at least, even less fucking clue than I usually have. On the up side. They’re done. And though we can’t walk on it tonight. Again. It will be dry tomorrow and—pending a quick once over with a mop—finished.

Then it will take us another three weeks to move all the shit back again.

No. We’re not going to.

We’re going to sort though the shit and sell/bin it. That’s kind of OK except I have so much fucking shit to sort though and get rid of and now it looks like I might be adding Mum’s to the mix because we all know how brilliant I am at cataloguing and tidying things up or selling them/giving them away. There’s a reason my rather fabulous collection of plastic tat has been languishing in 39 boxes above the garage since we moved here 15 years ago, instead of on display and it’s not all about lacking the room.

(Yes, just in case you need this spelled out. I’m shit at those things. Really, astoundingly, gobsmackingly, special-super-hero-attribute levels of shit, so my life is going to be an unbounded joy for the next six months/year but hopefully things will fuck off and leave me alone after that.)

On the Mum front. Mum is running out of money. The people who are supposed to be getting continuing care for us appear to have stopped doing whatever it is they do and I’ve chalked 4 grand of her cash up to experience. My interactions with them are very different to that of Mum’s carer, who recommended them to us. She said they couldn’t do enough to help, my experience is they have taken 4 grand of Mum’s cash and can’t do enough not to. I’ve paid 4k and it seems their job is to tell me what to do and wait until I do it for them. I did think, for that kind of eye watering fee, that the carers and I were going to provide the information and they were going to collate it.

No. Maybe the precedents they will use to prove their case will make the cash worth it. Maybe but it’s worrying, when the key reason I went to them was because I knew I was too burned out to collect the information required and navigate the process on my own in the time we have available.

The way things are, I am, indeed, too burned out to chase this stuff up myself and they aren’t doing it either. They do not volunteer any communication. I have to contact them, they take two or three days to reply to emails, and it’s not possible to speak to anyone on the phone, you have to leave a message and then they call you back, usually during a doctor’s appointment, or while you’re driving, or on the loo or in an area of stupendously sketchy mobile phone coverage.

I asked how it was going and they said they were waiting for medical records and asked me to send a document I’d already sent. I did so and chased up Mum’s doctor. They then contacted me to say they were still waiting for the records. I said I’d chased and asked them to let me know when the records arrived. Next port of call, chase them again and then, presumably, chase it up with Mum’s doctor.

Having employed them because I needed someone to do this shit for me, to take the admin out of my hands because I’m too slow to do it they’re just sitting there making me do it all. Indeed, it seems I’ve lumbered myself with a double layer, and a stopper between myself and the care board that is slowing things down rather than speeding them up.

Ho hum. So yeh. It’s probably actually taken longer than it would have done if I’d done it on my own. Head. Desk.

A learning moment then. Chalking that one up to experience. I’ve sent them heaven knows how many documents, in certain instances, several times. You wait. I’ll get a lovely email from them tomorrow now and feel really guilty for writing this.

No. I won’t. Although they say it takes 8 weeks to process after they’ve received all the information and I think Mum’s doctor is dragging his feet signing off the medical records, because he’s absolutely swamped with admin.

Meanwhile things are progressing slowly with identifying a possible learning issue for McMini. I am hoping to get an assessment for visual processing which is something that is relatively straightforward to sort once it’s identified. He’s burned out and I don’t think he would be burning out from school if there wasn’t something making life extra difficult for him. His intellect is razor sharp, which makes it all the more difficult. As I understand it, burn out is one of the tell-tale signs of a learning thing.

Other Mum news. OK, so … the continuing health care company may yet come through, but Mum’s financial reserves are unlikely to outlast the time it is going to take. That means we have to sell the house. Talking to one of her carers the other Wednesday, she confirmed that Mum doesn’t really know where she is anymore, which means we can now move her. So she’s going to my lovely brother. Not to live with him but to a home near him which is opening up, quietly, bit by bit, and which specialises in dementia care. We were looking at next year but Bruv has to do the do during the school holidays and I should be there to help too. If I am going to have Christmas at Mum’s with her that means, the way our holidays and trips abroad fall, that it would be June 2024 before we could move her. Too late. We’ll have run out of cash. Or just after Christmas. Except, if I do that, it will have to be the first week in January or Bruv is back to work and as a teacher, with school holidays, he can’t really ask for time off during term time for this.

But … we are going to McOther’s folks in Scotland for New Year and we can’t cancel that because they are 5 hours away, they can’t travel and with Saturday school, holidays and half terms are the only times we can go.

So … the only other time is the beginning of the this school holidays … which means I needed to drop everything last weekend and belt up to Shrewsbury to look at the home, which was lovely, luckily. It was lovely to see Bruv, wife and kids too and heartening to meet the staff and see the home. I genuinely think Mum will be happy there.

Having given the home the green light, we’re moving her mid December. Then we have to clear the house and sell it. I have to do stuff like cancel the phone and broadband contracts and get the garage cleared (it’s full of stuff that belongs to someone else). Bruv and I have to decide a) who gets what and b) what we might sell to pay care fees.

It’s been interesting, as at one point I was looking to meld Mum’s broadband and phone into one. This would be £20 a month for both rather than £30 for each one. However, where the utilities (except the broadband) were all with one company; SSE, that company is now defunct so it all went to Ovum or OVO or whatever they are. They then divested themselves of the phone account to a company called Origin broadband. I rang Origin but in the long chain of passing accounts from one operator to another something has changed the account name. It’s no longer in Mum’s name it seems, or at least, when I gave the account number and they asked for my account name for ‘security’ and I gave mum’s name, as printed on their welcome letter, they said I had got it wrong. They asked for a title. There isn’t one so I said Mrs. That was not the correct salutation apparently. I then suggested ‘hello’ which is what it said on the welcome letter. That was also wrong. We tried two different spellings of Elisabeth; the way she spells it and the usual one but that wasn’t right either. So nobody at Origin can actually access my mother’s telephone account … because it’s not in her name. So that’s a joy to come when I try and cancel the phone.

Dealing with Origin I spoke to a lovely lady in South Africa (she used ‘just now’ and had the accent) and we did have quite a giggle about it as she tried 101 different permutations of Mum’s name to get in but we failed in our mission and she wasn’t able to help. We had to give up which is a little ominous.

I guess I just write to them and cancel the Direct Debit with the bank, but they are now dealt with by a call centre in India (even though Mum chose a special account specifically to have her telephone banking handled by a UK based call centre). The folks in Bombay or wherever it is are actually lovely but it’s a terrible line, a lot of them are really soft spoken so even I have trouble hearing them and they are far more interested a perfect administrative record than any meaningful customer service — jeez nobody does admin and minutia-driven bureaucracy like a this lot I wonder if they’re handling BT’s help line as well — so I’m not sure how far I’ll get with that.

Meanwhile, I’ve been getting vaguer and vaguer. I know dementia is my destiny but I was hoping not quite yet. Two weeks ago I bought an air plant in the market. I know I had it with me at the check out shortly afterwards in Marks & Spencer’s because I remember picking it up and taking it outside but somewhere between M&S and home I put down the bag it was in and failed to pick it up again. I literally don’t know where I lost it. I only remembered I’d bought it two weeks afterwards. Arnold’s pants. What a bell end.

In health news, because I am one eighth French, which means that if you ask me how I am I WILL tell you … I have finally been to the doctor properly about my aching hands and while I suspect they are a bit arthritic, the main problem is carpal tunnel. The sore arm I have been experiencing when metal detecting for the last year and a bit which has suddenly become permanently painful … that’s tennis elbow. So I’ve had that for over a year and the carpal tunnel since 2015.

Ah.

Nice to know I’ve been looking after myself. Mwahahahrgh!

On the upside, both those things can be fixed with physiotherapy. Excellent. So long as I haven’t fucked the hands up too badly in the intervening 7 years since they started. I had been to the doctor before about the hands but they said it was arthritis. My bad, though, I should have been more articulate about the type of pain. I didn’t really think about it until it got really bad. Then I realised it wasn’t responding to the same things as my arthritic bits do.

So that’s a joy. But hopefully a fixable one.

There are Christmas events too! Please do feel free to come and visit me at the St Edmundsbury Cathedral Christmas Fair on 23rd – 25th November, 2023. Woot. I will be the one dying on my arse while those around me sell stuff feverishly hand-over-fist. I’m busy prepping for this, I have to order some eyebombing calendars, a couple of books and some cards. I also have to decide whether I’m going to visit a local cafe, clean the mirror in their loos and take another photo of the eyebomb I did there so it looks better as a Christmas card than the picture I have already.

Picture of an ornate frame with eyes stuck on it so it looks like father Christmas

Oh ho ho

Right now it’s the spit of Father Christmas but you can really see the dust. I thought writing Oh-ho-ho! in red or drawing a silly hat on it might help. I dunno.

Events! Norcon! I never blogged about Norcon! It was fabulous this year. Sorry not to post. Although no Nigel Planer selfie this time because he wasn’t there. Pity as I loved his book and was hoping I could buttonhole him and tell him. It has a similar feel to mine, which was heartening. So yeh, would have loved to have talked to him about that. Never mind. Can’t win ‘em all. Maybe next year. I sold a lot of books though, at pre covid levels. Which was lovely.

Ditto McMini’s most recent gig. Jeepers but he has gigs springing up like mushrooms all over East Anglia, including a Friday here and another on the next night in Norwich which will be a bit hard core for his perennially knackered 55 year old mother even if it will be fun. I should add that I sell the merch so it’s like doing a small event. I’ll get used to it though and the last gig I went home to entertain dinner guests and other people sold the merch for me!

Where was I? Oh yes. Events. A few weeks after Norcon it was time to take part in the first ever Fringe Literary Festival, here in our very own Bury St Edmunds. They had a short story completion: Fast Forward, for flash fiction up to 500 words. I put the start of an incomplete series in (one of the many things I’ve managed to get half way through but is now too complicated to complete until the emotional load is lighter than it is now). OK I condensed it a lot but if you want to listen, it’s here. Although there’s a lot of background noise. Sorry about that but the stories were read out in venues around Bury which was brilliant but less easy to record cleanly. Not that it mattered! As always, I was stoked to hear it read out. Here it is anyway.

So there you have it. Things are very, very hectic. I have a talk about burnout on 7th December. I’ve been working on it all year and I am cautiously optimistic that I will get it done in time but it’s tough because I’m … well … burned out. Mwahahrgh! Even more burned out than usual! As for writing, have I written anything new? Have I bollocks? Sigh. Maybe LIFE will fuck off for a bit next year and I’ll get a chance.

Ho hum, onwards and upwards? How have you been this last three months?

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Tagged as author blog, author blogs, author parent, comedy fantasy fiction, dementia, I fucked this up so you don't have to, istuffedthisupsoyoudon’thaveto, K'Barthan Series, M T M Makes a complete tit of herself, M T McGuire, off topic, writers, writing

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

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Tagged as author blog, author blogs, author parent, book marketing, dementia, dementia emotional cost, dementia fiscal cost, full time mum writing, I fucked this up so you don't have to, istuffedthisupsoyoudon’thaveto, M T McGuire, Mary Fails at Modern Life, massive rant, rant, trying to be a writer

21 May 2023 · 6:47 pm

We’re not at home to Mr Cockup. Oh no, no, no, no.

Except we so smecking are. Mwahahargh!

Picture of an amber warning light for an automatic gate with plastic googly eyes on it to make it look like an irritated face.

Yes he’s a bit fucked off.

I was going to do a post about writing this week—and accompanying things—but the accompanying things got a bit out of hand and so I’ve gone off on a completely non-writing related tangent.

Do you remember a refrain from the Blackadder II episode where he’s made Lord High Executioner?

‘We’re not at home to Mr Cockup!’ he tells his team. And they fuck it up, of course, and Baldrick says, ‘Shall I prepare the guest room for Mr Cockup, my lord?’

Yeh, well … Mr Cock-up seems to have taken up permanent residence in the spare room and his omnipresence has affected most events this week. Sadly this time, my inefficiency has impacted on my ‘work’. I put ‘work’ in quotes because we all know that I don’t have time for a real job, since what I do is look after Mum and be a mum. My writing ‘career’ is the thing I pursue in the few minutes a week that I laughingly call, ‘my spare time’.

Here’s the thing.  For the last, I dunno how long, the cunningist of my most cunning marketing strategies has revolved around the crack dealer’s school of marketing. Give them books, get them hooked and then make them pay. To whit, I have been handing out cards … these cards … (see pic).

picture of two business card-sized flyers advertising free books.

The QR codes send people to a page where they can download The Last Word (top card shown) or join my mailing list (other card shown) and grab a copy of Nothing to See Here… In case, like me, readers can’t get the QR code reader on their electronic thingy of choice to work, there’s a link written out longhand as well.

When I changed ISPs a few months ago, I lost my website. I’d run out of space and there wasn’t enough room on the server to back it up properly … except that I didn’t realise that and so when I got the new site up and running and tried to upload the backed up file it told me to piss off.

On the face of it, this wasn’t so bad. I have an earlier back up which contains most of the material I’d want to keep. Also, I used a lot of orphan pages; that is blanks with information about my books etc but without the menu and distractions that might make people browse away before they’ve properly assimilated how fantastically brilliant my books are and ponied up for one. Phnark.

Those were stored on my computer. I composed and edited them in a very ancient copy of Dreamweaver … 2004 ancient, to be precise … and put them backwards and forwards using the ancient Dreamweaver’s integrated ftp. As a result I was able to upload those to the new site and so most of the stuff in my automations should be working as usual. But things with Dreamwever are getting a bit shonky—it being nearly 20 years old and that—so I’ve been attempting to use an alternative.

Anyway, because I’m so organised and efficient (oh ho ho) I made a list and started downloading the code for all the pages I wanted to use … except that then, I suspect, I saw a shiny thing, or something happened with Mum, or McMini needed a lift somewhere and I got called away, and when I returned, I thought I’d finished. What distracted me is immaterial, the point is I hadn’t finished the job that I thought I’d done.

Yes, it turns out I’ve been handing out these cards like confetti and sending people to my site to download a free book to read and all they get is a 404 error.

Mmm, well done MTM. Bellend of the week award anyone? Ah yes, that would be me.

Balls up discovered, I have now put it right and the page for people to go to when they click the QR code is back in position. However, my gargantuan cockwomblery does not end there. Oh, no, no, no …

It now transpires that the QR code on my mailing list sign up cards points people to a sign up page with my list provider rather than on my site. I did these cards when I had artwork but in advance of publishing the book so I had to guess what I’d call the landing page with a view to making it later—when there was a book there for people to download and I’d written an onboarding sequence. I duly made up a name for the landing page, which involved the working title of the novella rather than the one it actually has…

Can you guess what happened next?

That’s right. I forgot to make that page. I forgot I’d made the link. I forgot that was where the QR code pointed but I had the cards printed anyway. Once again, the helpful QR code was taking them to a page that said oops but this time, rather than an oops page hosted by me, it was hosted by Mailerlite.

Mmm. My professionalism knows no bounds.

Bollocks.

In order to have a neat link, I used a link shortener.  Needless to say, in the interim, the link shortener in question, Bit.ly, has drastically reduced the facilities of its free account so I can’t just make a new one for bit.ly/hupbook or whatever because I’m only allowed to use the ones bit.ly gives me, you know; bit.ly/1f*5hio;avew or something equally catchy and easy to print correctly and remember. So what did I do? Well, I just duplicated the signup page I have, and renamed it with the name I used when I made the original link. Simple! But also. Ugh. Head desk.

As you can see, my marketing’s been just peachy this week, say I with such leaden irony that if I decide to move this sentence I’ll need a special, heavy-duty winch. Then again, perhaps my … er hem … marketing prowess has been kind of OK because I can tell myself that I’ve fixed a long-term problem that’s been extant since mid January.  Which makes this a win. Obviously. Snortle.

How did I not spot this problem earlier? I hear you ask, except I probably don’t because I expect you’ve nodded off by this time, but as usual I’m going to pretend, for comic effect, that I did. Er … hang on … oh yes. How did I fail to spot this? Well the QR code isn’t the only thing on there, I have also written out the link … except … it’s a different link which goes to a real page which does exist and will allow them to sign up and download the book. Not a total disaster then but kind of weird, all the same. I’ve left it like that for now because an alternative means changing the artwork.

Going forward (not a phrase I like but probably the best one to use here) people can at least sign up to my mailing list or download a free book with those cards, now. They probably won’t but that’s not the point is it? The point is that they can.

It’s been one of those weeks this week.

Similarly, I ordered a new case for my phone. I needed a wallet case because I like to have a single card in there and be able to go out with just my phone without being caught short of cash. Also, if my wallet’s nicked and I have to stop everything else I can still pay for things in a shop and get cash while I’m waiting for them all to arrive AND I can still buy stuff if I go out and forget my wallet.

However, I couldn’t find any companies that made them for my phone initially and had to buy a normal case—this is me, it has to have a protective case of some sort because otherwise, I’ll smash it. Although even with the protective case I smashed the phone-before-last on day two.

The case it has is great but I have to take it off to plug in a USB stick to download my photos, and as I’m doing the eyebombing book at the moment, I need to keep moving eyebomb pictures from my phone to my computer so, as you can imagine, this has become a sizeable point of pain. I have google drive but anyone who’s ever tried to download anything more than one photo at a time from Google Drive will know a) what a palaver it is and b) that when it compresses the photos into a zip file it leaves three quarters of them out. Massive, MASSIVE ball ache. The USB storage stick is way easier, even if you have to keep taking the phone out of its ruddy bastard case each time. That’s how eager Google is to ensure you don’t bother and pay for extra storage. Money grubbing bastards.

Sorry, where was I? Ah yes.

Having ordered the case, it arrived two weeks later from China and I discovered I’d inadvertently ordered one to fit a Pixel PRO rather than a plain pixel. When I put ‘custom wallet case for google pixel 6’ into a search engine, I have to be very careful that I check the results are not for a Pixel 6 Pro, which is bigger, because no matter what I do, it lumps them all together. I also get annoyingly irrelevant ‘sponsored’ results from companies who don’t make a custom wallet case for a pixel at all. I know I had the right one initially but the internet dropped, I had to reload the page and I didn’t realise it had defaulted back to pixel 6 PRO again. Bastards. That said, it was so rubbish that when it arrived I was almost glad it didn’t fit.

Needless to say, only one other site offering a Pixel 6 (not pro) wallet case popped up on my search results, but apparently they’d changed some vital parameter to ‘custom’ that made BT parental controls ban them. Or perhaps it was because they’re called hairy worm, phnark. Uh yeh … I guess it could be that. Sometime, long ago, in the dim, dark, distant past, we put parental controls on our BT internet access because … you know … McMini.

However, that was eight years ago. We are out of contract and neither of us knows our BT password so we can’t change it. I tried to get this back off BT but was unable to because it was confidential information. So confidential that once it’s been lost, they can’t even tell the actual account holder what their own password is. Likewise, if they spell your name wrong, they can’t change it. I might be able to tone down parental controls via the wi-fi router and I will probably try at some point in the far future, when I’ve nothing better to do.

Alternatively, it might be that only McOther can do it because he’s the account holder and being his mere wife means I’m not secure enough. I did have a secondary account and password which I could do this stuff with but those no longer work, probably because I haven’t used my BT email address, ever.

As far as the account goes, I think there has to be one default email address but we can’t get in because … password … and they can’t send it to us because we can’t get in to read the email. Anyway, they’ve spelled our surname Maguire, the ignorant tossers, so they can fuck off.

Hmm. Sorry. Not ranty or anything today am I? I’m just in a grump because my son has very generously shared his cold with me. Back to my long and rambling story. I just know you’re on the edge of your seat. Mwahahargh!

Luckily, I have data on my phone so I just used that to bypass BT’s draconian system by using my data and my phone, instead. I did try to report it as an error but obviously I needed to know my account name and password for that. Considering I uploaded the artwork, positioned it and chose the text colour using my phone I am actually quite chuffed. See picture attached.

Mmm … K’Barthan swag.

Nothing much else has happened this week other than my opening what, I suspect, is going to be the most gargantuan can of worms. I asked about getting Mum a care assessment for a continuing care grant; mainly because one of her carers’ grandfather had been given it and she told me that, in her professional opinion, he was no more in need of help than Mum. Her mother, who is also on the care team, agreed. I asked what they did, and apparently another family member had contacted an agency who’d done it for them.

Armed with this information, I rang the agency in question but they told me that if Mum is able to speak she isn’t bad enough. The chap there seemed to think that non-verbal was a key factor and told me to come back when she reaches the pureed food stage. I’m a bit confused by that because if she needs help to stand, go to the loo, wash, dress, cook, clean and can’t even use the phone or turn the telly on by herself then surely that’s 24 hour care.  To be doubly sure, I rang the Admiral nurses helpline. Sadly they don’t cover where Mum lives so they won’t be able to help with the process but they were able to advise me and said that yes, Mum definitely had needs that made her eligible for Continuing Care.  Next, I got through to social care at the council who thought I should contact her Doctor. I guess what I really need to find is the local social services number for her and get a social worker on her case. I’m not 100% sure how that’s done, as with Dad I seem to remember it happening automatically. I’ll have to look up his notes and see if I have a number for them from then.

Essentially, Mum needs a care assessment first from the right team. Apparently you can call and ask for one of those any time. Then the results of that are scrutinised closely and financial help awarded … or not. The trouble is, nothing says who you call to get this initial care assessment sorted.  There are parameters and a procedure, but to the outsider looking in the vaguaries of the system are very difficult to understand, at best and at worst, it comes over as deliberately opaque, whimsical and arcane … Mum ticks most things on the list but, as yet, I’ve found no concrete information as to where the starting point of the system is. As a result, I’m not sure who to contact to have the care assessment done. It’s a NHS team, who does the assessment for the actual application, but I have no clue if we need a ‘normal’ assessment first from social services. I’m guessing we do, although I’ve found a thing that says a district nurse can arrange this, too so I might see if I can get the carers to liaise with them.

There are two agencies who will apply for NHS continuing care on behalf of people, and a law firm with the most ridiculous name on earth—they’re probably really good but the name screams cold-calling ambulance chasers. The only one of these august bodies that quoted a price for their work charged £2,500 and some suggest as much as £6,500 depending on what they have to do. I will have to think about whether it’s worth that. No, it’s definitely worth it, for my sanity, to pay someone else to do it for me because this will be a grim project to try and undertake on my own and, like all the Mum stuff, is a perfect storm of everything at which I am shit.

In the meantime, I’ve started filling out the form on the website of the other agency. I’ve already stalled at how much Mum has spent on her care … well … you know … apart from, ‘everything’ but some of that was the day-to-day costs of running the house. She has a state pension so there’s that on top, as well, though so theory, it’s actually a bit more than everything.  Everything with brass knobs on? I dunno.

What I don’t understand is this; while I appreciate that they aim to make it hard for people gaming the system, it would be quite nice to set it up so the people who needed this particular part of the system would have some blind clue as to what, exactly makes them eligible and how it works. There are lots of really clear accounts that explain what will happen when you are already in the system and what the steps of the evaluation are. But how to start the process? Absolutely fuck all.

Carers looking after a sick relative who are seeking continuing care for them, or people who are sick themselves and need continuing care … they’re not exactly endowed with an abundance of energy for administriviatitive shit because they have a craptonne on their plate and are already nearly broken. I should imagine many of them will never get money to help with care, money to which they are entitled, because they are too fucking ill and their relatives too fucking frazzled and burned out to even begin to work out how to fucking apply.

Fuckity fucking fuck! Preparing the guest room for Mr Cockup then, even, also as we speak.

Ho hum. Onwards and upwards.

Astonishingly cheap ebook and audiobook alert …

Yes. Spoil yourself with your good taste (Ambassador) and a wonderful free book. Mmm hmm. If you are looking for a fun novella—to relieve the considerable tedium you may be experiencing after reading this blog post, for example—or if you’d like to listen to an audio book in the car, or at work, or on the commute and you are just fresh out of ideas for fabulous newness … well, you can fix all those things by grabbing a free book.

This book.

Small Beginnings, K’Barthan Extras, Hamgeean Misfit: No 1.

It’s free to download in ebook format from most of the major retailers (except when Amazon is dicking with me) while two and a half hours of glorious K’Barthan audiobook deliciousness is a mere 99p or c from Kobo, Barnes & Noble, Spotify, Apple and Chirp (if you’re in the States). It’s also free to download from my web store.

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

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Tagged as an author with children, author blog, dementia, full time mum writing, I fucked this up so you don't have to, istuffedthisupsoyoudon’thaveto, M T M Makes a complete tit of herself, M T McGuire, off topic, trying to be a writer, women in sci-fi, women writers, writers

7 Jan 2023 · 5:08 pm

In retrospect …

It has occurred to me that I haven’t done a blog post for a long time and when a friend noted it in my Christmas card, expressing concerns as to whether everything was OK I thought that maybe I ought to, so here I am.

Picture of coloured glass table decoration with candle inside and glasses plus another night light in the background First up. Happy New Year everyone … belatedly, I admit.

Second, just to confirm, yes, I’m still alive.

There is a lot going on and I think part of the problem with the blog is that when I come to talk about everything that’s happening … I just don’t want to give that shit any more air time. I’m exhausted, I’m spent, I’m done. I pull up the page with the best of intentions and then, suddenly, when I think about the events I have to describe, everything is grey and dull. The same thing is happening with my thank you letters and my tax return so I need to get my finger out from up my arse. On the upside, I have successfully opened a new savings account which pays a higher, and fixed, rate of interest. So there’s that …

The other thing that has curtailed the blog is that I was increasingly discovering that I only had time to write a blog post and market my books every week and so I dropped the blog in favour of using that time to inch the WIP forward, one tiny, tiny increment at a time. Yes, as usual, glaciers are leaving me standing and I am eating the dust of continental drift, so slow is my progress. On the up side. It is happening. Which is definitely a bit of a thing, woot. I’m having slight difficulty with the timeline but I think that will improve over the next couple of months … once I’ve finished my bloody bastard tax return, of course.

So there we are … what better time to jump back into my increasingly sporadic blog habit than now, with a look back over the year in a post peppered with pictures from the many and varied holidays I went on, which I almost completely fail to mention? Yes. I think it would. On we go.

Where have I been?

You may remember that last Christmas was, to put it politely, a fucking nightmare. I came out of three nights at Mum’s short of breath, sleep deprived—yet still unable to sleep when I got into bed—and with heart palpitations, which was fun. I was also fourteen and a half stones, which is well over 90 kilos and I ached pretty much everywhere.

I wore an ecg for a few days and was pronounced fit but menopausal. Yes the menopause also gives you palpitations as well as brain fog. It’s the gift that just keeps on giving.

In the New Year, I managed to get the tax return done early on in January and then do some writing January as well as February, March and April. Those three months tend to be my window of opportunity and then, by the time the April holidays are finished and we are into May and the Summer Term comes, it’s birthdays and shit, and summer bar-b-queues so peopling edges writing out of the frame until I end up finally giving up and shelving everything over the summer holidays. It tends to stay shelved until either the next year or until I do Nano in the November (more on that later). Meanwhile back to early 2022.

I had been concentrating on rehab for my replaced knee and I was aware that I had pretty much sorted it but that ideally, if I could find a gym to attend for a year, I could push it that little bit further. Strangely, an ad popped up for a local gym on my Facebook feed, but I was browsing a local community group at the time and thought it was just a post so I filled in the form and they rang me back by return. I was about to go skiing so I booked to join up on 30th April and do a try out over the month of May.

Things with Mum were tough, we were still coming out of COVID in that everything took twice as much admin conducted through call centres where management had fired half their staff and weren’t bringing them back any time soon. Worse, I still hadn’t really managed to get back on the dementia care horse after having lock down off and lovely easy runs down to Sussex in the intervening months. It’s all very well but running another house and another person’s life for seven years is actually pretty fucking tiring. I was so weary. I was done. I still am.

There are always points with dementia care when you want to give up and it feels like being dragged kicking, screaming and protesting to your doom. Oh no! No life for you this will take ALL your spoons FOREVER. Into the valley of death we go, where the gas will sit on our lungs and stifle the oxygen out of everything. Mum was getting worse, my heart was filling up, writing was getting harder and harder and I needed an easy win. Since I was getting less and less writing done in the time I had, using that time for something else, said easy win being a case in point, seemed like a plan.

sunset over mountains With the gym initiation booked for 30th April, we went skiing, I did more writing, but not as much as I’d have liked because I was sick as a dog, discovering, on my return home, that I had COVID.

Joy. The Pandemic. Another gift that keeps on giving.

View from the pilot’s seat of a fighter jet.

Yes those are my knees, sitting in a fighter jet. 2022 wasn’t all bad.

It was also Easter and by some unfortunate coincidence, we managed to arrive in pretty much every town we stopped in for the night of the week on which all the restaurants were closed. Not that I felt that well—but the McOther’s threw it off in a trice obvs. I felt post-feverish for about six weeks afterwards.

However, on the up side, when I got back, I was 14 stones 2 lbs—which is about 90kg and about 5lbs less than I had weighed before I left

The gym wanted me to ~~do a diet~~ play calorie pontoon every day by tracking what I eat. I am pathologically averse to dieting in any form but I decided that I could hack it for a month to see if it worked because otherwise, I wasn’t giving the regimen a chance. Counting calories is easier than you’d think because there are apps that help you.

However, it would be even more easy if ONE SINGLE BASTARD CALORIE COUNTING APP HAD THE COURTESY TO USE THE UNITS, MEASURES AND RETAILERS OF THE COUNTRIES IN WHICH THEY ARE SOLD. Can you imagine the uproar if the American site for MyfitnessPal was all in Metric weights and measures?

So why impose their stupid incomprehensible mentalist random bastard system of cups on us poor sods trying to use their app in Britain. How much is a cup? It varies, which is fine until the recipe suddenly demands you measure out half a pint of fluid, or do a fluid cup which is different to a solids cup, or an Australian cup which is not the same as an American cup.

Lovely though the Americans are, it never ceases to amaze me how absolutely batshit crazy they can be and how officiously difficult they like to make life for themselves … they are absolutely germanic about rules, but without the flawless logic. That’s three cups of rice, half a lb of butter, a quart of milk, what the fuck is a quart? and then suddenly, 25 grams of sugar. AAAAAARGH! (Throws recipe book across room!) MAKE UP YOUR FUCKING MIND!

Oops, sorry. Slight rant there. Where was I? Ah yes.

In the end I used the gym’s own app which was bad but gave a bit more of a nod to the UK existing. The only saving grace is that once I’d done it for a month, I had looked up all the things we usually eat, broken down the constituents I was required to track in metric and added them as my own foods. Some of the others also loaded up correctly with the app’s barcode reader, except Waitrose frozen peas which for some reason is a can of Jolly Green Giant sweetcorn from Kroger’s. We don’t even have Kroger’s in chuffing England.

Never mind, once I started eating as much protein a day as they suggested, I was absolutely stuffed well before I hit my calorie limit. At the end of the month, I’d lost weight and was doing my belt up a notch tighter. Despite the food tracking initially doing my head in. The idea of getting a bit fitter looked like it might work as Easy Win for 2022.

Trying to take an interesting view of the avenue de champagne in Epernay.

On the down side. The potential new gym cost as much, per month, as my last gym per year, even so, the easy win was clearly go! I signed up. I’m now 11 stones 12lbs or about 76 kg. I have not weighed as little as this for 25 years. My waist is 5” smaller than it was this time last year and I’m wearing clothes I haven’t been able to get into since 2005. The heart palpitations still pop up occasionally but for the most part, they’ve gone.

There were holidays too. The picture is from our summer holiday jaunting round Europe. First stop, Epernay …

The Mum Stuff.

2021 was a bad run financially for Mum. Carer after carer got sick and couldn’t work, they had been with Mum since 2012 and I felt it only right that I paid them sick pay. It wasn’t as much as they usually earned per week but it was something. But it did hammer us a bit. As a result, by the time we hit 2022 my Mum’s financial adviser got in touch with me and explained that he could no longer manage her portfolio through stocks and shares because there wasn’t enough of it. Anyway … Ukrain. Thanks Putin you absolute melt. So I agreed we should to sell them all.

Mum had enough money for one more year at the end of which she either needed to die in a timely fashion (this doesn’t happen with dementia) or we would have to put her into a home. The thing is, even if she’s living in her house, since it’s just her, she has to sell it and use the proceeds to pay for her care. This rule is the absolute zenith of bastardy but that’s the UK for you, horrid, small-minded pissy little island that we are.

There is healthcare insurance here in the UK but it’s not as plentiful or comprehensive as the US system. On the other hand, the NHS doesn’t treat dementia. It’s very expensive and as we all know, the NHS has been a) gradually run down and b) split into hundreds of private companies, each taking responsibility for one aspect of care the net result of which is that nobody seems to be accountable and a lot of money, time and effort is wasted.

Basically, the NHS palms dementia care off onto social services run by local authorities but they lack the funding to treat it properly either, although Social Services in Sussex were brilliant with Dad, truly brilliant, the parameters within which they worked still entailed taking all Dad’s pension to pay for this nursing home fees. Luckily Mum had some savings to live on, otherwise I’m not sure what we’d have done.

It is what it is.

So I’m sitting here, having spent all but £30k of my parents’ entire life savings, £750,000–yes that’s three quarter of a million quid—on care fees that they believed, for their entire lives, that they would get for free. It will be every last fucking penny and the rest before we are done. For most of the year I drifted, rudderless, towards the waterfall of disaster; glazed eyes staring into the abyss like a deer caught in the headlights. Immobilised by panic and horror, wishing my Mum dead so I didn’t have to break her heart and worsen her illness by taking her away from everything that was familiar; in this case, her home for 50 years.

Then I finally got my shit together and started negotiating an endowment mortgage. I wasn’t sure we’d go through with it but the care team reckoned that if we could keep her at home for another 18 months, she might not know where she was after that and we could move her into a home without it being cruel.

My brother had serious misgivings about keeping her where she was and wanted to whisk her off to a home near him. I think his social services are better than the ones here in Suffolk—indeed Suffolk mental health services are notorious, I think they were second from bottom in the round Britain league tables last time I looked. I had misgivings about moving her anywhere until she was ready. I was also petrified that I’d fall out with my brother—who I have always got on very well with—over this.

View of countryside from a very tall hill in the sun

It was hot … this is Italy

Finally, round about August the mortgage was ready to sign, but of course, the interest rate was rising just about weekly by this point—thanks bampot Putin. I was aware that we were going to lose a lot of the asset we were liquidating. We went on holiday and when we came home, my knee, the one that’s supposed to be fine, gave out. I suspect it’s back of the kneecap. I dunno. It might settle with a cortisone injection. I may give that a go. If it doesn’t, I guess I’ll have to see a surgeon. I think the next stage from the injection would be a MRI or whatever it is they do instead if you already have a knee full of metal the other side, and then an arthroscopy.

View looking up the side of a pillar at an ancient church painted ceiling

This is one of the churches in Alba, Italy. It was really rather lovely, as you can see

The knee was the final straw. I was well fucked off. I hadn’t written anything since March because my heart and brain were too full of Mum stuff. My book sales were tanking—in fact my whole literary career, such as it is, was dying on its arse even more spectacularly than it usually is. I remember going up the hill one day and quietly popping into church, lighting a candle and having very strong words with the Almighty about what an utter bastard he was being to me. I pointed out that seven years having to play to a perfect storm of everything at which I am shit is a sod of a long time and that I’d fucking had it. I told it that caring for Mum and Dad had taken everything from me; I’ve no job, no prospects and pea-souper brain fog. I explained, forcefully, that there was nothing left in my life but grey and also it’s hard, when you and your sibling stand to inherit about a million quid each in assets, to inherit nothing due sheer, shite luck.

It’s not like Mum and Dad spent their money, it was taken from them by a government that thinks it’s a really good idea to take a fucking horrible illness that wrecks lives and turn it from a horrific experience into something that will grind everyone involved to nothing. I was so fucking angry. I’m still fucking angry about that one.

Maybe God listened. I dunno.

A few days later bruv told me he didn’t want to do the mortgage but that he’d like to fund Mum’s care ourselves. At this point, I passed on McOther’s suggestion that we mortgage her house to us and that we should bethe lenders. If we did it all above board then then any of the asset we lost in interest would be paid to us anyway, as the lenders. We would be creditors, not family, so what we’d lent would not be included in death duties, which, if we’d just put money in and kept the house un-mortgaged, it would be.

He agreed. Then within days, Bruv was talking about it to one of Mum’s neighbours and they put me in touch with someone who was happy to buy the house and allow Mum to live there until she died. That didn’t work out, there are death duties implications around that, too, which make it tricky to sell the property for less than the market rate. But those two rays of hope were like sunlight in a darkened world where all was monotone and ash.

We have now mortgaged the house to ourselves, all done above board through a legal firm. I left the form at Mum’s for Bruv to sign after I visited, pre-Christmas. He’s signed it but needless to say there’s some giant slew of signatures from me on the end that need witnessed by someone who isn’t my husband or son. So I’ll take it to Church with me tomorrow and get some other poor sod to sign it, at which point, McOther takes it to the solicitors to date and register it.

I think we can manage 18 months between us. Then I think it will be time for Mum to go into a home anyway. Ideally the money will see her out but I doubt life will do anything that kind. It will be really tough to move her, when the time comes, but I hope she’ll be so away with the fairies by that time that she won’t really realise.

Visiting Mum is getting harder and harder because we are losing so much of her, but that permanent sense of dread in the pit of my stomach about her finances has finally gone after seven months. My resting pulse has dropped a few points, accordingly!

A morning glory (NO! Not that type) in Portugal

It was October by this time and after a nice holiday in Portugal, crap weather but lovely food although I caught some grim bug on the plane out which was a bit of a pisser. Then Mum broke her ankle and ended up in hospital. That was quite a lot more of a pisser but I did see my brother and his family which was lovely and got McMini, who is a hulking great teenager now, together with his similarly aged cousins. And we sorted that out and got her home, as you know from previous posts.

Other ‘Easy wins…’

All the same, after that lot I decided it was time to attempt another ~~easy~~ possible win; Nanowrimo.

Briefly, in case you don’t know, Nanowrimo is an initiative where you attempt to write 50,000 words over the month of November. The idea is that this is the length of a novel and you get to write yourself the first draft of your next book over that month. My novels tend to be more like 80-100k so I haven’t ever written a whole novel … although I did manage to finish one once.

For Nano 2022 I had a list of ‘scenes we’d like to see…’ for the book I’m currently writing so I thought I’d give it a go. Obviously, I can’t do anything on Wednesdays, so I always start a few days down on everyone else, the way they all fell this time; five days down. It’s a hiding to nothing a lot of the time, Nano, but it does usually result in my writing 35k. This year, amazingly, I managed the full 50.

Have I finished the story? Have I bollocks? But I am a lot clearer where it goes now which is a bonus.

Christmas was also easier. We were due to visit my lovely in laws this year and so we visited Mum earlier. She has a machine to help her stand up and the carers showed me how to use it. Mum is doing really well with her rehab and can stand on her own now, although I think the machine still gets used, too. Back then, though, it was machine only. She was way more with it, because she no longer had the UTI and chest infection they discovered when she was in hospital with her broken ankle. I couldn’t believe the huge difference that made. As a result, we had folks coming in to help her to bed and help her get up, more to keep continuity than anything.

In normal times we have a carer in at night but this time I did it. Mum was fine, she woke up early one morning (I didn’t) and McOther told her all was well, and to not worry and relax because the carer would be in soon, which she was. I even got a couple of hours out on the lawn metal detecting and found some reasonably interesting things which, I realise, I have not looked at since. Hmm… I know what I’m going to be doing when I finish writing this then.

Three pictures of a huge glass bottle with a cut glass lid from above, side and with cat for size.

The massive carboy, from different angles, with cat for size reference.

Another highlight of the stay with my in-laws was that we managed to make it to a small antiques shop up there that we always enjoy dropping into. I spent £50 (yeh, I know) on a massive jug like they use to put in the windows of chemists stores. I think the correct word is a carboy. I think it’s probably Regency to mid-Victorian but it might be later. It’s massive, and a bit mad but also awesome! I tried to photograph it just now, by draping the tablecloth from my bookstall over some things to make a neutral background. This interesting new soft thing had been on the carpet for approximately 30 seconds before McCat decided it would be a good place to sit and give his arse a really good bath. He gives you a sense of size though. It’s about two ft tall.

Brighton got drubbed but not as badly as the score looked.

By the 28th December, we’d done all the miles and were able to hunker down here. I spent New Year’s Eve sitting on the sofa watching telly with the McOthers wearing my pyjamas and the lovely fluffy new towelling bathrobe Mum and Dad in-law gave me, which made me feel as if I was in a posh hotel!

Since then things have been relaxed, the only blot being that I’ve run out of the magnesium pills I take. I had not realised what a significant difference they make to the brain fog. Oh lordy me my brain is mush right now. I have a new supply arriving on Monday though. So that’s grand.

Summary of the year then?

Hmm … interesting times. Lows and highs I guess. I’m proud of what bruv and I have achieved and Mum is doing really well with her ankle rehab, which helps. And although she’s way more nuts in some respects, she’s less nuts in others.

One of the noticeable things about dealing with the dementia this time is that I am leaning more and more heavily on escaping into my writing. The last time, with Dad, Mum and I talked. I don’t know how much I helped her or how much she couldn’t say but I just attempted to lighten the load and help her carry it, even if that just meant ringing her up with a shit joke or making her laugh.

This time, no assist of that type is required so instead, I am ~~pretending it’s not happening~~ trying not to concentrate the whole dementia mess unless I absolutely have to, and I’m sneaking off to K’Barth instead. Only for short periods of time but quite a lot more in my head. Yep. More ‘scenes we’d like to see’ there. I also have some non-fiction and other stuff to write, more on that story next time as I intend to do a look back over the year with my writing, too. It probably won’t be next week because I have a newsletter to write and the dreaded thank you letters and a fuck of a lot of peopling to do next week—plus McOther is off to Oxford on a work jolly so I have to squeeze the Mum visit in on Tuesday. But who knows, it might be. Whenever it is, I’ll try and make it a bit shorter than this one.

In truth I’d be lying if I said I’d enjoyed 2022. A lot of it was shite, except for the bit at the end and, for the most part, I’ll be glad to see the back of it. But I’d also be lying if I said it had all been awful. There was light as well as shade.

Also, another upside, I feel curiously proud to have got through it. Pats on the backs all round, I reckon. With the McOther’s and Bruv’s help we’ve sorted out epic amounts of godawful crap. That has to be a win, right?

Happy New Year lovely blog followers … Here’s hoping 2023 is a bit fucking kinder to all of us.

On a vaguely book related note …

Graphic book cover with two old ladies silhouetted against a darkened street If you have the remotest interest in any of my books, I have a page on my site where I list all the stuff that’s reduced or free so you can try it out and see if you like it. If you think that sounds interesting (oh yes you DO think it sounds interesting) then click on this link: https://www.hamgee.co.uk/cmot3

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Filed under General Wittering

Tagged as an author with children, author blog, dementia, M T McGuire, off topic, trying to be a writer, writer parent, writers, writing

24 Sep 2022 · 12:12 pm

Compassion … so fucking underrated

A picture of the queen This week I was going to write about The Queen, I may not have time to do it justice because I am going to have to write today’s blog post yesterday and speak to you from the past. That means I only have half an hour or so before I’m due to take McMini off to a club. Then, since he’s already eaten I have to come home and eat, then shower and then McOther will be picking him up. Tomorrow, or at least, today as you read this—Crikey! This is complicated isn’t it?—I’m off at 6.30 am to Norcon; and on Sunday too.

The Queen was a reluctant monarch. She prayed that she’d have a brother so she didn’t have to be queen—at that time, a boy took precedence over a girl even if he was younger. She also prayed that her father wouldn’t have to be king because she understood, correctly, that it would do for him in the end. Then she went on to do this thing she didn’t want to do for 70 years. That’s … seriously impressive.

Managing my parents’ finances and watching them gradually losing their sanity is probably a perfect storm of everything at which I am shit. Seriously, if God had set out to give me everything I find difficult he couldn’t have done a better job. It’s all maths and being organised and remembering to do staff, remembering to phone at certain times, sitting for hours on hold, patience, and numbers; a side of my personality which is seriously lacking and an aspect of my intelligence that is entirely absent. If my other brain was like my numbers brain, I’d be living in sheltered accomodation for people with learning difficulties. I’m great in a crisis and so naturally I am given a long-term millstone; a grinding expanse of interminable twilight grey that stretches as far as I can see. I’m one for the sprint, so I have been given the marathon. I can’t bear watching people suffer and so I must. For years.

Thanks for that, God. Thanks a fucking bunch.

Then, of course, I look at The Queen who stuck at it for 70 years, and I’m complaining about seven. Maybe I should rethink my weapons-grade whining levels then. Although not here, because, clearly that’s what this is for. I watched all of the State Funeral, and I enjoyed it too. Oh I know all the miserable republicans will be saying that the money shouldn’t have been spent on the funeral but frankly, I would consider a national event like that more valuable than the pathetic drop in the ocean of public funds the money it cost would entail. Clearly, I lack the miserable protestant fun-sapping outlook to think The Moral Way. President Johnson? In his dreams but thankfully, not our reality. It’s worth the expense for that, alone. I believe it’s actually quite important to have someone in power who doesn’t want to be there. King George VI was a reluctant monarch, Queen Elizabeth II was a reluctant monarch and I suspect Charles III is equally reluctant.

Good.

Sorry Chas but at the same time, I feel your pain.

I suppose it’s hard to see past the luxury but to me, guilded or not, a cage is still a cage. I wouldn’t fancy it myself. Oh yeh, money makes things easier, C.F. my present predicament dealing with the whole Mum Thing, and money can contribute to happiness, but it doesn’t make you happy on its own. Something inside you has to do that.

Having lived in a very small community where everyone knew who I was, even though I didn’t know them, and where everyone felt as if they knew me, and treated me like a long lost friend (lovely in many respects but sometimes difficult) I can imagine what being Royal is like. I lived in a place where everyone expected me to know them the way they felt they knew me, even if we hadn’t actually met before (still touching but also extremely scary) I can tell you that, even from direct experience in a very, very small arena, this kind of notoriety is significantly less fun than people think. If there was no escape? Ugh.

Royals have lots of stuff but only two weeks a year in which to enjoy it. As non royals, the rest of us Brits get four. It’s easy to forget that people with money, or kept by the state, are still human beings like us at the bottom of it all.

Personally, I feel that the debate about costs is disingenuous; a blind to cover the real issue, which is that some nod to a sense of social justice among those in Parliament would be very helpful right now and seems to be distinctly lacking.

Yes. In all walks of life it seems we are still raging at the most vulnerable in pissy, small-minded anger and egging our government on to even greater heights of petty vindictiveness towards the have nots, while it does the metaphorical equivalent of trying to chisel off a fifty pence that’s been superglued to the pavement as a joke while they ignore the huge suitcase of money behind them in the form of corporate tax ~~dodging~~ efficiency. You know, the stuff over and above the 1% companies like Google and Starbucks pay that they’re supposed to be paying.

Also, excuse me but why the fuck are they using my tax money to cap fuel payments? The fuel companies are posting record profits while the vulnerable and poor are choosing between eating or heating. Who should be paying for this crisis? I’d humbly suggest the fuel and energy companies whose corporate greed caused it.

Here’s another example; supermarket petrol. Supermarkets use your loyalty card and credit card transactions as anonymous data to track which products sell best where. They give people a rating based on income, A through to C and possibly D, I don’t recall (it’s a while since I’ve done this kind of marketing). Then they split each group into numbered bands, A1 the richest, A2 less rich, A3 still loaded but not as rich, B1 well-off professionals, etc through to C3 … possibly D3 I have neither the time nor the inclination to look it up for this, a very generalist passing point.

The supermarkets use this information to look at who buys what, where and then provide more of those products in the places where they sell withdrawing unsuitable products for the market demographic in that particular place. There’s no point having shelves groaning with caviar and truffles in a place where most people take home about £20k a year. They can’t afford it.

However, they also use this information to set prices. In areas where they perceive the population as less well off, they will sell the same staple, petrol for example, at a lower price than they will in another area where the population contains a higher number of B and A level purchasers who can afford to pay more.

This is how petrol costs more at Tesco’s in Bury St Edmunds—£1.69 a litre as I write this—than BP petrol does at my Mum’s in Sussex—£1.67 a litre. It’s also why Tesco’s charges £1.59 a litre for its petrol 15 minutes down the A14 in Newmarket. More C-level purchasers in Newmarket Tesco’s, clearly, or perhaps there’s a local garage round there that they’re trying to drive out of business.

Yes, I suppose it depends how you look at this. A Bury resident, might see them as pitiless, profiteering bastards hiking up prices in specific areas, where a Newmarket resident might seen them as kindly benevolent people cutting the prices in an area where people can afford less. They might see it as folks of my ilk, in Bury, who the database classes as better off subsidising those less fortunate than ourselves. If only that’s what it was but I’m afraid it’s a simple case of their being profiteering bastards. They’re not going to sell anything for less than the biggest margin possible and where they can, they’ll carve out an even bigger one … like the energy companies and every other company that gets so big it loses sight of it’s actual customers, the point of its existance, in its bid to grow even bigger, lock people’s spending in with it and no-one else, serve shareholders a nice fat dividend etc.

Frankly, the older I get, the more of a raving pinko leftie I become. I cannot believe we are going to have a recession caused by the corporate greed of our energy providers. There might be a fuel crisis, I dunno, but they don’t seem to have had much trouble providing power and fuel so far. Any shortages have been about logistics rather than scarecity; people panic buying and the stores running out.

How I wish we could re-nationalise the whole bloody lot. Properly. Sure, keep the government at arm’s length and run it as a business but as a not-for-profit or simply a company that is accountable to it’s customers first—the nation in this case—rather than its board or its shareholders.

Maybe it’s just the way I’m feeling at the moment but I’m angry and bitter and everything feels grey.

Indeed, I had a major melt down at the boys the other morning before leaving for Sussex to see Mum in hospital. This was partly because the vertigo was truly appalling. The worst thing was that I woke up feeling fine, but then, as I raised the glass to finish the rest of a pint of water, it suddenly kicked in. The boys laughed and I just lost it completely. I nearly cried as I ranted at them. Not about the vertigo, but just about how I just couldn’t keep a lid on my grief, and how awful I felt about having to hurt my lovely Mum and make her miserable because of the institutional prejudice the State, and the NHS, displays against people with dementia. Because we are going to run out of money. And we will have to sell the house for her care. And every time I think about it my stomach ties itself into a veritable Gordian knot which no amount of breathing exercises and sundry attempts to relax will undo. I think I got so melodramatic that I actually said I wanted to die, and right there, in the moment, I probably almost did. Jeez it’s a fucking hard row looking after dementia people and the NHS and government seem to go out of their way to make it as hard as possible.

Putting the vertigo on top of that was the last straw, I guess. It was a right royal pain in the arse on a Wednesday, too. I was so giddy that accelerating was giving me the spins. I have perked up a great deal since then. But seriously, why no compassion? Why no mercy. Why make it as hard as possible for people to endure one of the most horrific illnesses out there. Oh yeh, because it takes a long time and so it’s expensive. Seriously though, dementia care in the UK needs an overhaul. Fast. And something approaching compassion or empathy in our lords and masters would be a good place to start.

So what is compassion? Well I saw some in hospital the other day; the most gloriously surreal moment but also lovely. An example of someone with dementia being treated, not as a thing, but as a debilitated human, who was worth something. Treated with understanding, compassion and kindness.

While I was sitting with Mum she told me she needed a poo, which involves several staff and a bed pan so I went and got the nurse who told me I should make a sharp exit and sit in the waiting area. There was a little old dear there, who’d been there for some time. She was very thin, with straggly hair and she was cradling a handbag in her lap. I had clocked that she might have dementia because of the handbag and the fact there was often a nurse or carer with her. I sat down and all was quiet for a while until she spoke.

‘You’d better watch your bag round here,’ she warned me.

‘Oh. Thanks. Right. Yes, I will,’ I replied, lifting my bag from the floor and putting it on my lap the same way she had hers. We sat in silence for a moment or two and then she said.

‘Has my friend gone home?’

I guessed she might be making sense of her situation by connecting it with a comparable experience from her past, which is what people with dementia are doing when they have those back-in-time moments apparently. It’s important to say the right thing so they are guided towards a make-sense-of-this memory moment where they are reassured rather than agitated so I answered with a certain amount of caution,

‘I’m very sorry but I don’t know.’

‘Oh. Only she said to wait for her but I think she’s gone without me.’

‘Oh. That’s a shame if she has,’ I said still treading water a bit, ‘I haven’t been here before, though so I wouldn’t know for certain.’

‘She was making up to some bloke, I think she’s gone home with him and left me here on my own.’

‘Oh dear. Would you like me to ask one of the others?’ I asked, looking helplessly over towards the ward desk where the nurses and clerk were in discussion about something. ‘They might know,’ I told her.

‘She said to—’ she began, at which point a nurse walked past. ‘Big boobs and a fat arse, that one,’ she said and then reverted to topic without missing a beat. ‘She said to wait for me but I haven’t seen her for some time,’ then she smiled and said. ‘I’ve not seen you here before.’

‘No, this is my first visit,’ I squeaked, trying not to laugh at her previous comment. Lucky I was wearing a mask.

At this point one of the admin or at least a plain clothes staff, she might have been a consultant I guess, came over and with a smile at me and the lady I was talking to she sat down on a chair the other side of her from me.

‘Hello Edna,’ she said.

‘Hello,’ said the little old dear, or Edna, as I now knew she was called. The newly arrived lady smiled over at me and I tried to smile back in as crinkly an eyed manner as possible so she realised that, behind the mask, I was smiling back and grateful to her for being kind to a dementia sufferer. Edna continued, ‘Has my friend gone?’

‘Yes Edna, she has,’ said the staff lady gently.

‘Oh,’ Edna’s face crumpled a bit. ‘She said she’d wait for me. What will I do now? How will I get home?’

‘Well, maybe you could go back to your room for a little while?’ asked the staff lady. She was so gentle and so sweet with the old lady that I almost wanted to cry (and I definitely wanted to hug her) because … Dad. And Mum but especially Dad because Mum isn’t as far gone as Edna was yet.

‘Should I? What if she hasn’t gone, I don’t want to miss her.’

‘No, I understand. Aren’t you tired, though, Edna?’

‘Yes, I am, very but I think I should wait for my friend.’

‘Why don’t you go back to your bed and wait there, then? You can have a little sleep.’

Clearly the idea of a sleep was very tempting but Edna’s reply sounded hesitant. ‘I don’t know if I should …’

‘Aren’t you tired?’

‘Yes I am.’

‘Why don’t you go back to your bed and have a sleep then? You won’t get lost. I’ll go with you and then, if she comes back, I can come and find you.’

And so they set off, ward lady taking Edna’s arm, shuffling slowly up the corridor, then back, into one of the ward bays and out again … at which point Mum had had her poo, the curtains round her bed were opened again and I was ushered back. I never found out if they got Edna back to bed. When I left the two of them were still shuffling slowly up and down the corridor, looking for Edna’s friend. The staff on that ward were lovely. Nothing was too much trouble and so many of the patients had dementia. Bearing in mind this was a ward to treat infections, the added load wasn’t what any of the staff would have signed up for.

We need more of this. We need compassion, and love and kindness. And I don’t know where it’s gone but we need it back. Maybe if everyone reading this tries to go out of their way to do one kind thing this week. One random act of kindness, it would be a start. Feel free to give it a try if you like. No obligation though.

And now … I must fly because tomorrow I have a six am start. Eeek!

Yep, tomorrow is Norcon. If you are interested, I will be at the Norfolk Showground which is on the outskirts of the city of Norwich, Norfolk, UK, tomorrow and the next day. I will be there, flogging my books to the unsuspecting public and devaluing them by signing them. Except it will be today and tomorrow by the time you read this because … scheduling techology. 🙂

If you want to know more or would like to come along, you can find more information here:

https://www.nor-con.co.uk/

On a completely different note …

Here’s some good news if you like cheap audio books!

Once again, I’m cutting my own throat and having a sale. Kobo is doing a buy more save more deal on audiobooks this September and the K’Barthan Series, as well as Too Good To Be True, are in it. As a result, to make it more exciting, I’ve reduced the first book in the series to 99c on Apple, Kobo (of course) and my own website. For anyone in the States, it’s also 99c on Barnes & Noble and Chirp (which is USA and Canada). So if you want to grab it while it’s mega cheap you can find store links and a bit more info here

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Tagged as author blog, author interviews, comedy fantasy fiction, dementia, Events and signings, K'Barth, M T McGuire, off topic, trying to be a writer, women in sci-fi, women writers, writers

3 Sep 2022 · 12:38 pm

All the things … so many things …

This week, by the wonders of technology, I’m speaking you from somewhere I’m not. Yes. I’ve scheduled this post in advance. A LOT has happened this week. Let’s start with an update on, Mum.

Mum is in hospital still but she is getting better with each passing day. She has something like a potts fracture, having broken both the tibia and fibula bones in her right ankle but I think bruv and I have managed to convince them not to operate because she has a bad heart and dementia. She’s had a brain scan and it shows clear signs of dementia but apparently they’re not allowed to give her a diagnosis so we have to go to her Doctor for that. On the up side, she won’t have to go for a CT scan because she’s just had one. I’m hoping I can sort that out as she does need one.

We are kind of holding off on the mortgage to see what happens and how with-it she is as she recovers. Ultimately, she probably will have to go into a home but ideally, not until she has forgotten about her actual house and is happy anywhere. Strangely, this did happen in hospital, at the beginning, when she was first admitted. She is perking up now though.

Things looked a bit grim there for a while so I’m glad she’s bounced back a bit. McMini is going back to school, so I took him down to see her on Wednesday. On the upside we did also get to see Bruv and the Missus as well two of McMini’s cousins. We had lunch together in Worthing and were ready for visiting hours around 2.00pm so that was grand. We also met a lovely consultant who’d been looking after Mum and had a word with the doctor about her. She’d been moved to a different ward; Durrington ward. With the best will in the world, because the staff there are lovely, it does slightly strike me that the D in ‘Durrington’ also stands for ‘death’ and it does slightly look as if waiting to die is what most of the occupants are doing.

That is unfair, but it’s kind of a waiting room ward. People tend to end up there recovering from strokes, broken hips and other ailments usually associated with the elderly. As a result it is, slightly, the twilight zone between home and a care home, but also where people wait while their families get care in place at home so they can leave, or wait for the results of tests, or wait for treatment to be decided. There are usually some with dementia, of which Mum is one.

Everything felt very final on Wednesday, but as I understand it from the carers, Mum was a great deal perkier yesterday so I’m less worried. We should have a hoist and a hospital bed for her sometime next week and once that’s all arranged we can take her home. The most important thing is that, though bored, she is actually alright in herself and seems quite relaxed. The carers are taking it in turns so someone visits her every day, too and they are actually pretty up beat about getting her home and looking after her there. However, this does feel like the beginning of the next stage but … not in a scary or bad way.

So that’s a weight off.

It was also lovely to see my bruv and wife plus niece and nephew who went and played on the slots on the pier with McMini. An excellent way to spend the time! We had a fabulous lunch in the restaurant at the end, which is really very good. Then I went right to the very end and took a photo looking out to sea.

Meanwhile, I’ve booked to go one a two day metal detecting dig this weekend and there’s another one next weekend too! Lovely McOther has bought me some scotch eggs to have for my lunches. Smokes but I love scotch eggs, and I’ve charged up the detector all ready. Fingers crossed I’ll have a good day and find some interesting stuff. It starts at 9 but apparently there’s often a big queue for registration at these things so I will need to get there earlier. I’m aiming to leave here at half seven, which should get me there for quarter to eight, or thereabouts, and I will be up at half six so I can finish the IBS before I leave. There’s another one next week but they let you register on the Friday for that one so you don’t have to queue on the Saturday morning. I might do that, I think.

We went to the beach yesterday, which was wonderful, and I managed to get an hour’s practise in with the detector. No finds to report, well, except for 20p, but it did bring back how the tones sound, which was useful, so I feel a little more confident that I can still remember how to use it. I haven’t been out in an eternity to be honest.

Things are a bit busy and I do have half an eye on Mum and the other on the fact that I have two two day digs over the next two weekends, McMini is back to school, McGrandpa will be having a cataract operation. McGranny doesn’t drive and McGrandpa won’t be able to drive so McOther will be going to Scotland for a week to keep his Mum company and drive his Dad to and from the hospital. We’re not sure when that’s going to be though but the hospital will tell us when his slot comes up.

Then there’s the last weekend of September, which is NorCon. I have ordered a craptonne more books because it’s over two days. Yikes. I’m hoping that people will buy the small ones on the first day, read them and then come back to buy more! Well … I can dream. Also, THE CLOAK has arrived and it’s really rather splendid. Yep. I think we can say that it is good. I took a quick pic this afternoon but I need the full costume on to do it justice.

Other news, while I have steadfastly not lost any weight since the start of August.

Bollocks!

On the up side, I do now fit into an awful lot of clothes which I haven’t been able to wear for years, or at all in some cases. Yes, I really am that dumb. I actually have clothes that I bought thinking, ‘this is small but it will fit soon because my fat bastardy is temporary,’ about eleven years ago and turned out to be wrong.

Mmm. Bonus points for optimism.

That said, it makes for a nice surprise now. It’s a bit of a gas suddenly discovering that shirts I’ve not been able to wear for years, and was going to throw away unless this last ditch attempt to slim down worked, now fit. I’m liking that. I still have a lot of pot belly to lose but oh so much less than before! I think some of the slow down might be due to the fact we keep having Important Events (like McOther’s birthday) at which we eat things that are the antithesis of compliance with my eating plan and then keep eating them repeatedly for days afterwards, as left overs. I’m looking at you, baked potatoes. I love baked potatoes but one is approximately one million calories. Seriously, I could do my whole allocation for the day with one tuna baked spud. It’s frightening.

picture of two paper bags on stripy fabric backgrouns As well as the craptonne of books for Norcon, I decided I’d try getting bags done with a logo, too. That way, if I go bagging up my stuff when I sell it people carry paper bags round with the HUP logo on.

OK so the logo isn’t necessarily going to encourage them to read the books but it’s cool and people might ask what it is and the web address is on there so I thought it was worth a go. To that end, I have procured a rubber stamp and some green stamp ink as well as 100 recycled paper bags. God help me, I now have to stamp them all with a green logo.

Mmm I’ve done six so far. Watch me go! Mwhahahrgh.

That said, I have to confess to being pleased with the results.

Talking about green … last week something went gross in our kitchen bin. We removed the liner, washed it and dried it and put it back. Needless to say, neither of us noticed that there had been maggots. Boake! Or that the liner had holes through which the maggots had retreated into the bin proper and then each one had become little crysalis. Oh god.

I’ve no idea how long that takes but in my defence, both McOther and I checked both bins and noticed nothing. I’m not sure if it’s myopia or abject skankiness I’m pleading here but anyway, we saw nothing. But there were a lot of them. Which we didn’t see. And then they hatched into blue arsed, or at least green arsed, flies. For some reason they decided that the conservatory was the place to go, so on Wednesday afternoon, McOther went in there and discovered a whole swarm of them. I kid you not. It was like the fucking Amyteville Horror.

After killing 20, McOther closed the door and left the rest in there. We searched anew for the source and finally I discovered the remaining pupae under the bin and then, he discovered the pupae inside. Ugh. The weird thing was that, though there was something very stinky, at no point were there maggots. Well, no, there must have been but clearly they must have been whistle stop maggots because our bin is emptied about every other day and when we emptied the reeking yuk bag the other day, no maggots were in evidence.

Luckily they are mostly dead now. We have chalked it up to experience.

So … have I written anything this week? Er … no. But I have last week’s post to use as a handy guide when I get back to it again.

Fancy something a bit more fun?

NorCon! Yes, the Norfolk film, TV and comicon is coming up on 24th and 25th September at the Norfolk Showground Arena and guess what? Yes. I’m going to be there with some of my other author friends! Woot. If you want to come along and say hello. I will be dressed as The Pan of Hamgee complete with the New Cloak and devaluing my books by signing them for people.

Or treat yourself and stay at home …

Yes, Ambassador! Spoil yourself with your good taste and a wonderful free book. Mmm hmm. If you are looking for a fun novella, to take your mind off that whole thing I said back there about the green arsed flies, for example … or if you’d like to listen to an audio book in the car, or at work or on the commute and you are just fresh out of ideas fabulous newness … well, you can fix all those things by grabbing a free book.

This book.

Small Beginnings, K’Barthan Extras, Hamgeean Misfit: No 1.

It’s free to download in ebook format from all the major retailers (except when Amazon is dicking with me) and two and a half hours of glorious K’Barthan audiobook deliciousness is a mere £1.99/$2.99 on retailers and free to download from my web store.

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

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Tagged as an author with children, author blog, comedy fantasy fiction, dementia, Events, full time mum writing, istuffedthisupsoyoudon’thaveto, K'Barthan Series, M T McGuire, Mary Fails at Modern Life, writer parent

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.

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Filed under General Wittering

Tagged as author blog, author daughter, dementia, dementia emotional cost, dementia fiscal cost, K’Barthan Extras, M T McGuire, mtmcguire, off topic, slowwriting, The Pan of Hamgee, trying to be a writer, writers, writing

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.

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Filed under General Wittering

Tagged as alzheimer's, dementia, dementia emotional cost, dementia fiscal cost, Mary Fails at Modern Life, massive rant, rant, what the fuck do I tag this as?, what to expect

15 May 2022 · 5:26 pm

Still hanging in there …

Still here … 🙂

There’s been a bit of a long break and I thought I should probably pop in here, if only to reassure you that I’m still alive. There is a reason for my absence. First up, I was away on holiday for two weeks, during which I incredibly cleverly managed to get COVID 19. We all had it, the boys for a couple of days each. Me? Like all colds it went on for chuffing ever. First a week of really bad allergies during which I consulted a pharmacist in the resort and as it only appeared at night she reckoned I was right in thinking it was allergies.

Then, on our last day at the ski resort, I woke up with a temperature and a full blown cold (I get a temperature for the first couple of days with most colds, I’m rubbish at them). The cold turned into a two week sinus infection. After that there was a period where I felt very post viral. Once I’d been clear five days I went to church (I sing in the choir) and at the end of the first hymn I was surprised at how weak and sweaty I felt. I think it’s pretty much gone now but I’m still really tired and I feel terrible about all the people I met and spoke to over the second week on holiday, when I was huffing COVID cooties over everything. I sincerely hope I didn’t give it to any of them.

On the up side, although I didn’t know it was COVID I knew I had a cold and I felt it was only polite, in the current pandemic, to wear my mask for every and any interaction with other people. I also sanitised my hands to the point where they were so sticky I could probably have used them to climb up the sheer sides of glass buildings. Probably.

Hopefully all that protected everyone from me. I think masks probably stop more coming out than they stop going in. I hope so. The fact it was Easter and everything was shut also helped as it meant I didn’t sit in restaurants infecting people the way I might have done if any of them had been open.

While I was feeling drippy and post viral, I ditched anything that I absolutely didn’t have to do. So that meant everything except a bit of writing here and there, my monthly newsletter and Mum stuff, of which there is a craptonne right now. I also included ditching the blog. Although, I’m beginning to think that ditching blogging might not have been such a good idea. Not in the long run.

Overwhelm

I didn’t mean to talk about this today, but I’m going to because, fuck it, this is my blog after all.

The thing is. The Mum stuff has been really hard. There was so much of it that at first I was afraid (I was petrified!) ~~Kept thinking I could never live without you by my side~~. At first I did just go into fluffy-bunny-in-the-headlights mode but after a few weeks of going, ‘shiiiiiiiiiiiiiit!’ I managed to belt up and did what I always do in situations like this. ~~Ignored it and pretended it would go away.~~ No! I stopped looking at how much there was to do and divided it up into little tasks; began at the edges if you like, chipping away at it one small job at a time. Phone this, post that, check these etc. Trying to do one small thing each day.

Net result; I’ve finally broken the back of it. I should be smug and yet, I still feel a bit overwhelmed with it all at the moment. I know why, too. I’m coming up to the anniversary of Dad’s death and I miss him, real him. When Dad was sliding into insanity, I could always ask Mum stuff. But now Dad has gone and Mum is sliding into insanity and there is no-one to talk to. Well no, there is but I’m making these decisions without the ultimate authoritative input of the demented person’s spouse, whereas when we made them about Dad it was simply a case of discussing it with Mum.

This is the hardest and loneliest thing I’ve done. It’s worse because I know my brother doesn’t really agree with what I’m doing. I love my brother dearly and I don’t want to fall out with him but the stress of continually going against what he wants, and what is actually the most sensible course of action, is a bit grim. The trouble is, the sensible thing isn’t what’s best for Mum, and if I want to be able to look at myself in the mirror every morning for the rest of my life, then I have to do what Mum wants. Even if she is as mad as a box of frogs. Even if, were I to ask her aged 50, she’d be horrified. It’s a bit of a shit position to be in.

Also, with the mountain of stuff I had to do, and the fact I was recovering from COVID and couldn’t do much else, I did have to have a bit of a sprint at it eventually. Drop everything and sort it. This approach is OK for a short time but with the COVID it went on longer and … I suppose I’ve looked too hard into the face of Mum’s dementia for too long and that always leads to trouble.

The trick with dragging the millstone up the hill is to know what’s happening but at the same time, not acknowledge it. Like some warped Magic Eye picture, I can see the image but I mustn’t uncross my eyes and let reality creep in or I will be undone, and god knows I can’t be undone.

If I allow myself to think about what is happening in the wrong way—or at all really—there are tears. But not useful, get-it-all-out tears. They’re the pointless crappy ones that achieve nothing and just fill your nose with snot.

Also. I’m so fucking angry. I’m absolutely incandescent that my parents were promised free health care and then, at a point when it was too late for them to do anything about it or plan for alternatives, it was taken away. Oh I could rail against the Government, and NHS’s institutionalised discrimination against certain mental illnesses while it happily treats others but what’s the fucking point? I could write letters, I could write to my MP and get the usual boilerplate reply referring me to the statements she has made about the issues that most concern her on her website. She doesn’t even pretend to give a shit.

All it will get me is a sore throat or numb fingers. I could keep on asking the powers that be why, if two people have the exact same symptoms, one can be treated on the NHS for free and the other is forced to pay—not just their money but their house, possessions and everything they own, simply because their illness has a specific name. I could ask why people with dementia are taxed to the tune of all they own, unless they’re fortunate enough to die first. I could ask them if that’s just. Or right. Or building back better.

I suppose it might make me feel I’d made myself heard but I doubt it. Trying to do anything about it is like pissing in a wetsuit. Doubtless it will give me a nice warm feeling for a moment or two but it’ll make fuck all difference in the long run.

And I suppose it doesn’t help that we seem to have one of the most morally destitute bunch of stone-hearted cocksuckers ever to darken the doors of Parliament running this country right now. A bunch of feckless, misogynistic lounge lizards who also, unfortunately, appear to be completely teflon.

We have someone at the head of the nation who is an international joke and, possibly, one of the most unsympathetic and bone-headed premiers since Cromwell. Except, stone-hearted, empathy-free bastard that he might have been, at least Cromwell appears to have had some kind of moral compass and seems to have genuinely believed he was acting to help his people rather than just blatantly helping himself.

The present shower appear to pride themselves on having the kind of moral standards that make the Emperor Nero look like an exceedingly uptight nun.

Sorry, where was I?

Mum stuff and it being hard. I guess what makes it hard is that everything takes ages. Twenty minutes on hold, minimum, for a three minute telephone conversation. Then there’s the whole fact that we are mortgaging Mum’s house so we are basically gambling on how long she has to live. And we can only mortgage half so if she lives more than four and a half years, we’ll have to sell the house and move her into a home anyway.

Then

I guess what I’m saying is that it is possible I need to do some serious self care.

If you are looking after someone with dementia, this is probably the point where you’re hoping I’m going to share some amazing coping mechanism with you, right? God in heaven! I wish I could. But to be honest there just isn’t one. I guess the almighty (who I’m also pissed off with about this) has just decided that the camel WILL through the eye of the needle and 50% of people over 70 will get gold plated entry into the Kingdom of God by din’t of a whistle stop visit to hell before they die. Going nuts and spending everything they own on care.

Seriously though, one of the things not writing my blog for a few weeks has taught me is that actually, it’s pretty vital I that write my blog. By venting all the anger and weirdness and tension on here I get to be effortlessly normal in the Real World.

Well. No. That’s not exactly true. Normality is always an effort but you get the picture I’m sure.

For example, having a Basil Fawlty style rant on here and will make people laugh. It might make them think and it might make them sympathetic but by making it funny and airing it here I can cut the sense of overwhelm I feel down to a manageable size. Laugh at it and it loses it’s power and all that.

Conversely, having a Basil Fawlty style rant in real life leads to awkward silences. I’m clearly not funny enough to carry it off face on. Or maybe I’m just too desperate and too angry. Like a young woman I saw on Live at the Apollo a few years ago who did a fabulous stand up routine about nursing her mother through cancer. It was so powerful, but it was also painfully raw and the audience looked like they wanted to hug her, not laugh.

Even worse, by not ranting it all out here, it spills out when I talk to Real People. Yes, I have fallen into a terrible habit. When people ask how I am, I’m fucking well going and telling them.

This is not good. This is so, so not good.

I do not want to turn into the kind of person people hide under parked cars to avoid. I don’t want to be the dear woman my mother used to hide in the coat cupboard from (she was lovely but she was enduring very tough times and she talked soooo much).

Am I there yet? I don’t fucking know! But I fear I’m perilously close. I’m going to meet up with some of my old school friends this week and I am actually quite nervous. I have lost so many friends by meeting them during a crisis after a long time apart and then being too intense, too weird and too chatty to the point where they quietly delete my details from their address books and move house.

A big part of the stress is that I’m appalling at this stuff. Seriously. In my 20s, I had an IQ of 149. One point off genius level. But the side of my brain for maths is … it’s so stupid. Brain 1 is sitting there looking on in complete incredulity as Brain 2 tries to understand compound interest. One side of the house is mercury quick, the other is like wading through semi congealed tar. It’s weird and frustrating and thank God McOther has agreed to attend the mortgage meetings with me so there is someone there to ask pertinent questions and understand it all straight off.

Then there’s a fair bit of guilt. One of the things that cropped up, doing all of this, was how badly I’ve taken my eye off the ball. I confess that while Mum was reasonably well and not deteriorating as much, I kind of let things slide. I wrote stuff and did things with my spare time that normal people might do. IE nothing particularly looking-after-Mum related. She was very frail after Dad died, and although I knew that the Almighty is far too hell bent on crapping on us all from the stratosphere to do us the mercy of having Mum’s money outlast her, there were three years of it and logic said it should.

I really should have known. Again, it might be easier for us to pass a camel through the eye of a needle than to enter the kingdom of God but I’m sure that, with the help of a blender I could— yeh alright. Moving on.

Returning to my derelict duties I discovered that Mum’s payments from Dad’s work pension had stopped and that she is on the lower rate for one of her benefits when she should have been on the higher one since she started to need carers at night (April 2019).

Gulp.

On top of that, I realised that if the council tax definition of severely mentally impaired goes on levels of dementia alone, she should be eligible for a council tax disregard, which means her council tax payments are waived. As these are over three grand a year it seemed quite a good idea to get the forms for those and ask her Doctor if he was prepared to sign them. If he doesn’t, I am now at the point where I can safely say I’m spending over 35 hours a week on Mum and I will claim carer’s allowance with a clear conscience, instead, and bung some of that her way. (You can’t do both).

None of this is quick. Oh my goodness no. But I stayed on hold for the prerequisite 20 minute plus to each of the august bodies I was required to contact and got the forms sent out. In the case of the pension, although Mum had signed a chitty to say they could talk to me, it was too long ago. They gave me an email address to send my power of attorney to and then told me I’d have to wait 10 – 12 working days before it would be ‘on the system’ and I could ring to ask my question again, at which point, they assured me that they’d answer it. I put a note in my diary to ring on the magic day and relaxed knowing the forms would arrive at Mum’s while I was away and I could pick them up a couple of days after getting home.

But then I arrived home and discovered I had bastard COVID and I couldn’t get to Mum’s to pick the forms up before they expired.

Can you guess what happened next kids?

Urgh. Yes. That’s right. I had to phone them all again. I swear the Man has decided that the new way to keep us down will be to give us pointless shit to do, like sitting on hold for a fucking eternity to ask a question that is answered in about ten seconds.

So over the past couple of days I’ve been writing covering letters and filling in forms. In black ink and in capitals. Needless to say, I ballsed up the forms extensively but hey, Tippex is my friend. I sent one form to Mum’s for her to sign with instructions to the carers as to what they needed to add (her list of meds) and bless them, she signed the forms yesterday and they put them in the post. So that’s one job done that I’ve been meaning to get round to for several months.

Meanwhile at the beginning of the week, I sat down with the next round of paperwork the mortgage broker had sent, filled that in, decided how much we needed to borrow and sent it off.

Yesterday, I filled in the council tax form and sent it to Mum’s doctor, with an SAE to send it back if he signs it. Once that comes back to me I can send that on, or apply for carer’s allowance if he can’t sign without a pukka diagnosis. Mum is doing fine thinking her memory is crap. She can maintain the illusion that it isn’t dementia, even though she kind of knows it is. But if she formally hears she has it she’ll be undone. So I can’t get a diagnosis if she has to be told about it too, it’s too unkind.

Good news is, the fucking mountain of administriviatative shite is nearly all in the bag, except for signing up to the actual mortgage, which will require the services of a solicitor. Oh yes and getting rid of the last of Mum’s shares, which are in an old family firm but needs must. They have to go.

This is not the end, or even the beginning of the end but it is the end of the beginning for this particular period of intense Mum-based activity. Once we’ve got this bit done she’s set for another three or four years and it’s like I can see the end of the tunnel on this batch now, after which there will be a calm period.

Sure it will be horrible when the mortgage is spent and we have to sell the house and put her into a home, but there’s no point agonising over that until it happens. I guess what I’m saying is that, I should be able to write some more soon.

Talking about writing …

There is an outside chance I will finish the current W.I.P. this year. There are 102k words of it so far and I have a horrible feeling it’s going to be three books. I might be able to break it up into 50k instalments though. We are only half way through but it’ll need tightened up and when I’ve done that I suspect I’ll have three 50k instalments, two 85k novels or one absolute monster. As the other books are short but the first book featuring Goojan Spiced Sausage is also 85k I’m thinking two at that length would work really well. Otherwise one 50k and one 85k (if I can keep the prose spare enough) would also work with the some books short, some books long nature of the rest of the series.

Lastly, I’m thinking of entering Too Good To Be True for a sci-fi book award. The books have to be over 50k, a stand alone or a first in series. I’d be entering it as a stand alone. Unless it isn’t. Decisions decisions. The competition is adjudicated by sci-fi bloggers. They’ll probably hate it. They usually do. But what do I know?

Right. Until next week, that’s me … although it might be after next week, but it might not because I have to tell you about my pathetic efforts to do a calorie controlled diet and my new electric bike! Woot. I’m also thinking of doing a kickstarter to raise funds for the next book in the Hamgeean Misfit series, Starting at $10 but it gets all the other books too, or something like that. Let me know in the comments if you think that’s a good idea.

If you’re bored …

Why not try the audio box set of the K’Barthan Series from my shop with 30% off. If you’d like to give that a go, click on the link and type ARNOLD at checkout.

K’Barthan Box Set Audio in Reduced Circumstances

Alternatively, if you enjoyed the books and have the inclination, why not write a review of one of them. A list of them, with links to them on the main stores can be found here

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Filed under General Wittering

Tagged as dementia, full time mum writing, I fucked this up so you don't have to, istuffedthisupsoyoudon’thaveto, M T M Makes a complete tit of herself, M T McGuire, Mary Fails at Modern Life, off topic, women in sci-fi, women writers