Tag Archives: sad

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

10 Apr 2021 · 12:15 pm

Ouch …

Well it’s that time of the week to write a blog and as I sit here, tapping at my keyboard, I see from my BBC Newsfeed that the Duke of Edinburgh has died. It kind of reflects my mood. I sat down, determined to share a couple of stories about him, which reflect a warm, kindly fellow with a sense of humour. Except really what I need to write about today is Mum. Since one of the stories about the Duke is an encounter with Mum I guess it kind of ties in then. This should probably come with a trigger warning. If you do not want to read me whinging about dementia cut this one and wait until next week.

Random picturesque illustration for M T McGuire's blog, in this case Arras Grand Place. — Random picturesque illustration because I’m all out of – shrugs – y’know … pictures.

Right, those of you who are left, on we go.

We’ve had a bit of a time of it with Mum yesterday. First one of the loos at her house has broken and needs fixed. It does need fixed too because it’s the one the guests and the carer’s use. Well, it was put in 48 years ago so it doesn’t owe us anything. It needs a new siphon but odds are, we are better off buying a new loo. As sis in-law said, ‘it’s a rubbish flusher’ and she’s spot on. We could have limped on with it, but now it’s actually bust, I think it has to go. That evening, the night carer turned up to discover Mum sitting downstairs in the kitchen having breakfast. She thought it was morning.

Pretty much anyone who has a relative with dementia will recognise this. I think most of us reach this point in the journey when there is absolutely unequivocal, incontrovertible proof that the person with dementia really has dementia and that it’s getting worse, a lot worse. Not better. That’s so hard.

The thing about dementia is there is no way back, no getting better, no relief, no recourse. Nothing but deterioration and death. I try really hard, but it’s difficult to see that any which way but grim. The only thing you can do for a person with dementia is try to ensure that their days are filled with kindness and sympathy, that the moments they live in are happy and that this will amount to a feeling of overall wellbeing, even if they don’t remember why or where it comes from. Oh and that they experience the least fear possible. There is nothing else to be done. There’s a honeymoon period from the first signs to this point, where you are all denying your arses off and telling each other that it’s just old age and that a gentle peaceful death will intervene way before madness does.

Thing is. It won’t.

And when you hit the point when you realise that, odds are, there’s going to be no mercy. That’s when it’s really, really hard to stay … well … chipper. Truth be told, I do far more snivelling at this point than later on.

But you have this horrible dichotomy when you want the person to carry on living, no matter how ill they are, because you love them and you don’t want them to go. But at the same time, you know they can’t and that if they do, the person with you won’t necessarily be the one with whom you are familiar. So far, Mum is still, mostly, Mum. We are lucky in that.

Mum goes to bed very early. This is partly because if someone helps her to bed at six and she sits and watches telly in bed all evening there is less risk of her falling. She is self aware enough, in her good moments, not only to have mentioned falls but explained that avoiding this risk is a big part of her original decision to get to bed earlier. Later she was always a bit more wobbly, especially if she’d had a sleep in the chair. Now, even more so, it’s a case of doing it while she has someone to help with the buttons and to remind her what she’s doing. It’s also partly because as she becomes less mobile, she is far more worried about lighting the fire in case a log falls out and she can’t get to it or isn’t strong enough to wield the fire tongs and put it back. It’s cold downstairs without the fire and a lot warmer upstairs. Another reason to get to bed early. She is also smart enough to know the extent of her disability and realises that if a log fell out and the hearth rug caught fire, she might not be able to remember how to use the phone if she became flustered or panicked. The third thing is that she often nods off in the afternoon and she didn’t like it if she nodded off and woke up, confused and disorientated, downstairs. She found it easier to combobulate, so to speak (or is that re-combobulate?) if she was already in bed. Hence she started going to bed earlier, straight after she’d eaten her tea at half five, sixish. That way if she did wake up she was already in bed, which reduced the WTF factor when she woke up.

A couple of months ago she rang me at about half past five in the evening asking for help. She’d got herself into a right old muddle, she told me, and she didn’t know what time it was or what she was supposed to be doing. It was easy to tell that she was afraid and it was horrible. I reassured her and explained that it was about time she got herself her supper – which the carers usually leave out for her.

‘What do I do after that?’ she asked me.

‘Ah well, then, usually, you draw the curtains and go upstairs to bed where it’s nice and warm and toasty. You sit in your bed, in your room and watch telly and doze for the evening.’

‘Oh, I see, I’ll do that then.’

‘Good plan. Do you want me to stay on the line and guide you through it all.’

‘No darling, I’ll be alright. Just remind me though, curtains first then supper and bed?’

‘Yes and don’t forget to put your eye drops in.’

After that one, we upped the care so the carers now pop in at half five or six-ish and give her supper, have a chat, help her get undressed and help her to bed.

We’ve had a couple of dodgy episodes since, usually when she knows she’s got something on and insists on getting up and getting dressed if she wakes up at four am to go to the loo, so she can be ready in time. Then there was the moving to higher ground because the news on the telly about Covid was bad and her worry that I’d been trying to persuade her she hadn’t been living in the house very long – that was the other way round. She was saying she moved there in 1986 and I was trying to explain she had lived there over the holidays from 1974.

This one though. Waking up and thinking it’s morning, I’d guess that nearly everyone looking after a dementia sufferer has experienced this. It’s an unmistakeable marker, if we didn’t know it already, that Mum is leaving us. It’s more than an imagined shape in the mist this time, it’s clearly delineated shadow.

We’ve done this with Dad and do you know, I thought it would be easier. Why on God’s green earth did I think that? It’s just as shit. Except that actually, it’s worse, because it makes me miss Dad. I miss Dad with all my heart because THERE’S NO SANE ONE. There’s nobody Bruv and I can talk to who can reassure us we are doing the right thing. It feels as if it’s all guesswork. But worse than that; the most horrible thing of all, is that even though she’s still here, I miss Mum. The time I spend with her is very precious because she’s still there when I’m with her and when we live in the moment. But just as Dad got to the point when he couldn’t really talk so well phone any more, so Mum is beginning to have days when, if I give her a call, I know we aren’t going to have much of a chat. Those are the days when I’ll ask how she is and have a few brief words and then sign off. Kind of a relief if I’m strapped for time, but sad in other ways. And hard now because it’s one of the few things I can do for her and it was something she really enjoyed. But I also miss being able to ask her for advice, because she could do advice and she liked being asked and being able to help. It made her feel useful. Incidentally, that’s a really, really good thing to do in the early stages. Ask them advice. Ask them lots of it. It helps them think as well, which is also good.

This is the hardest bit really. I’m not very good at it. I thought that if we got to this point with Mum I might cry less, but I don’t. I’m not hardened to it at all. It still hurts like a bastard and if I’m going to look after her properly I have to let it, which is a bit of a pisser. The thing is, it’s light and shade, the shadows are there and we can all see them clearly now. Hence the tears. But there is also light and I just have to concentrate on the good days. And possibly up the care a little or have the night ladies come a little earlier. And exorcise it … elsewhere. Doubtless I’m going to be giving The poor old Pan of Hamgee a completely shit time in the next Extra. Either that or the series about Ada, Gladys and Their Trev at the Parrot and Screwdriver is going to get very dark.

Never mind, I have a fun quiz for you to do in a minute and since I’m here I may as well share those stories about the Duke of Edinburgh as well.

Duke of Edinburgh Stories.

The Duke of Edinburgh is controversial in many respects, I know but as someone with an inate and similarly powerful ability to cause unwitting offence he was a man with whom I could empathise. There are folks saying they are glad the Duke has died. The way others see it, the Duke of Edinburgh was the product of a generation which had seen the world very differently and whose intentions were clearly good since, while he might have seemed old-fashioned and insensitive, he had done good things, like the Duke of Edinburgh’s Award Scheme. I remember Dad going to the Palace with one of the boys in the house who’d got a gold Duke of Edinburgh Award. I think the Duke presented the gold awards personally until very recently. He did good stuff and the Duke of Edinburgh Award is both class and colour blind, exactly the way it should be. There’s a good article about it here. So his legacy there is not the way some people, and here-say, paint him.

Already, I know of a couple of people who’ve had a spat over this. Person A believes HRH to be a racist and stated that if Person B didn’t believe the same thing then they were a racist too. Person B said they felt that was a rather black and white interpretation. Especially in light of the fact that all they were saying was that they felt it was not compassionate or humane behaviour to be glad at someone’s death. Person A told Person B that they needn’t bother staying in touch. Person B’s other friends are now taking the mickey out of them for being a racist. Apparently there’s an awful lot of quoting Father Ted.

‘So father, I hear you’re a racist now!’ (best delivered in the voice of Mrs Doyle).

It would be hard to find a more laid back, less judgemental person than Person B, who takes everyone as they come but it does herald the kinds of comments I’m going to get from those who are a little more intransigent about their views than I am for trying to be even-handed here.

Going back to the Duke of Edinburgh. Whatever his faults, he appeared to me, as an outsider, to be a reasonably intelligent man, with an enquiring mind who was interested in many things and, for the most part, wished to do good. He also had a sense of humour, which is a hugely underrated attribute. It’s surprising how many people, if you ask them, have a Duke of Edinburgh story. Well, it was a long old life he lived, and he did get around but that is the point. He tried to promote and help a lot of people and took an interest in many things. Hence I have a picture of Mr Potato, McMini’s godfather, seen here waxing lyrical to HRH at some agronomy do about … well, yes, potatoes. And believe me, this is a man who can wax extremely lyrical about potatoes to the point where HRH may well have been late for his next appointment.

I also look at the Duke through the lens of someone who knows that, as people age, they lose a lot of filters, or unthinkingly say things that would not have turned a hair when they were younger but now do, especially when those things are taken out of context. But I also notice that we, as people, are becoming more literal. I suppose it’s because everything is written down on the internet these days so there is no non-verbal aspect to so much of our communication. But I remember people taking the piss out of me about my looks and not being bothered at all because I understood the spirit in which the remarks were made, while other folks could say the same things in a slightly different way and I’d be extremely angry. I do understand that you can’t say a lot of stuff because even benignly meant, it could be taken out of context and will always be read as nasty rather than cheeky should that happen. But in many ways this loss of judgement and appreciation that there is a middle ground between the black and the white is unlikely to better things or make us happy. Anyway, here are the stories.

Story number one. Back in medieval times, when I was at school, a friend’s mum was big in to scurry racing. This is micro ponies with equally micro light weight traps raced round a course of twists and turns, hills, slaloms etc. Her mum was at some big event, probably the Surrey county show or the like and doing rather well, except there was one point on the course where she kept muddling her left from her right and almost going the wrong way. Friend’s dad was trying to think of ways that Friend’s Mum could remember which her left and right hand were – I so identify with this because I’m absolutely clueless at telling my left from my right. Anyway they were waiting to do their run and still talking about this with the ‘solutions’ suggested by Friend’s dad getting sillier and sillier as he tried to calm her nerves. While they were talking a Random Fellow nearby, overheard them and chuckling, he said.

‘Maybe you should try tying a red ribbon round your right wrist.’

Quick as a flash friend’s dad retorted wryly, ‘Why? Do you do that to your wife?’

There was an almighty guffaw and that’s when friend’s mum and dad clocked that Random Fellow was the Duke of Edinburgh.

Other quick one. Mum was a debutant and as such you get presented at court. I asked her what the hell happened and I wrote it down somewhere but needless to say, I can’t remember where. Basically there’d be a few days of it when hundreds of young ladies gathered in groups in the White Drawing Room, I think it was, at Buckingham Palace, to be herded through into an adjoining state room and PRESENTED AT COURT. No judges or juries involved. You were put into groups and then you were called forward, one-by-one and introduced to the Queen and the Duke of Edinburgh who were seated at one end. Your name was announced and you walked up to them, your name was given, you curtseyed and I think the occasional pleasantry was exchanged after which you went off and the next person came in. Mum had the same knee disease as I did and had surgery aged seventeen. I think she walked with a stick until she was about twenty five although, I suspect, not for this. I remember, as a wee nipper, that every time we knelt down at the altar in church, at communion, Mum’s knees would crack. It was always the same noise, and always quite loud. I could hear my mother kneeling down in another room and know who it was from that crack. Hmm, thinking about it, that probably is quite loud. Indeed every time she bends the dodgy knee, said crack still rings out like a gunshot – only marginally less noisily than it used to.

So there was Mum in her best bib and tucker, walking the length, breadth, diagonal or whatever it was of either the White Drawing Room or a state room into which it led. There was H M The Queen and the Duke at the other end. Mum walked over to them in stately, demure fashion in her smashing debutant’s dress, curtseyed and of course, off went her knee. Crack! She was very embarrassed and as she turned a gentle shade of puce and tried to maintain her shredded dignity the Duke gave her a massive smile and winked at her. It doesn’t sound much, but remember this was the late 1950s so things were very much more austere and proper in those days. Mum assured me that wink was like a giant get-out-of-gaol free card. It was just enough to let her know it didn’t matter, and put her at her ease, without drawing attention to it and embarrassing her even more. I’d have liked to have met the Duke, if only to thank him for being kind enough to put my mum at ease, but I wouldn’t have wanted to meet them like that. Luckily all that malarkey had been done away with by the time I hit eighteen so I didn’t have to do it.

I always felt that The Duke was a man with a sense of humour – and as far as I could tell, from the anecdotes I heard, which are mostly stories like these, he clearly had a somewhat acerbic wit on occasion, and I suspect he may not have suffered fools gladly, but I can also imagine that he was a very much more well-meaning and dignified person than is made out.

And now for something completely different …

Yes, it’s quiz time … again.

OK, so I had an idea that it would be fun to use the black on white and white on black versions of the spiffy new HUP logo to make some print on demand stuff on Zazzle, Society 6 or somewhere similar that will feature favourite K’Barthan centric quotes.

In particular I like the idea of a set of mugs with the things that Humbert shouts. What could be more fun then wowing your work colleagues with a mug that says, ‘Bite my winkeyi!’ Yeh. OK, possibly quite a few things but … you get the picture.

Alternatively, some mugs or possibly even t-shirts and badges/pins featuring K’Barthan swearing would be fun and a Great Snurd (of K’Barth) Company Limited baseball cap.

That said, I think a first wave of Humbertisms, to test the water, would be best to start. To answer the question click the button or click here.

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Tagged as alzheimer's, author blog, author choices, author daughter, author parent, bellendery, cheese (gromit), cockwomblery, comedy fantasy fiction, dementia, K'Barth, Mary Fails at Modern Life, sad

5 Sep 2020 · 3:10 pm

Well … that was weird …

Lancing Beach. Just to throw you when I’m talking about Suffolk beaches later. Some guy found a gold coin here.

A strange week all round. I was going to share some of the questions and answers I’ve been doing with Gareth, because they are hilarious but a couple of bits happened that I thought I’d share instead.

First up Mum. As you know, Mum has dementia. She passed the NHS memory test with flying colours but then, everyone does. My Dad did, even after his diagnosis with Alzheimer’s in 2012 As far as I know, they were still giving him this stupid memory test until 2017 – because nobody told us or the Doctor about his diagnosis until then so we still didn’t know what he had – and he was still passing the bloody thing with flying colours. It’s not just the patient who is in denial for ages when dementia rears its head, it seems. The NHS also.

As well as dementia Mum has arthritic knees. A while back, in 2015, she had them looked at. The surgeon thought a new knee would be too complicated and that the requirements of the recovery process too taxing but they did give her a new hip, which she also needed. To be honest, I think the knee was more the problem but half was better than none and it did remove a fair chunk of pain so that was good.

Off I go wandering from the topic again … back to the point … the result of not having had her knee done is that Mum has one particularly dodgy knee which tends to give way on her. The other day it did and she ended up on the floor and hit her head – I blogged all about it here. Quick recap: because she’s on blood thinners, she had to go to hospital and have a brain scan. She had to go in alone because … Covid … which for someone with dementia who has banged their head, is not ideal. They were great with her, though, and she did well too. They took her in at three pm and was ready for collection by six. But she explained that her knee had given way and she’d grabbed the nearest thing for support which was, unfortunately, a door handle, so the door opened and she slid gently to the floor where she ended up wedged in a small space and so she couldn’t get up.

Having had this mishap, I thought that maybe it was time to get her something a bit more stable than a walking stick to use in the house. A Zimmer frame wasn’t much good as she’s quite frail and couldn’t lift it. She uses a fold up thing with wheels and a seat when she is outside which, I believe, rejoices in the name of a ‘rollator’. These are great because the wheels make them easy to push, the seat provides welcome respite from standing too long and they have breaks to help you control them. This one is ideal for outside but she needs one that’s smaller for use in the house. I had a look … God bless the internet … and found some that I thought might do.

Three Wednesdays ago, I sat down with Mum and the Carer and we looked at three wheeled light weight rollators. There wasn’t one with a seat, well there was but it was about £200 but I found one with a bag that she could use to get from one part of the house to the other. She can still put the secateurs in it lay flowers across the top of the bag etc. Having found it, I showed it to her and we had a chat and she decided it might be a good thing to have so I ordered it, there and then.

A week later and one of Mum’s carers found one that another lady wasn’t using. It wasn’t light weight but she thought it might be useful. I agreed it might be and suggested she bring it round and I’d cancel the other, except of course that the other then proceeded to arrive. Usually when you buy these things you get an email saying it’s been despatched. In this case, we didn’t. So it turned up without warning.

The Carer looking after Mum that day opened it, set it up and Mum … went into orbit.

I kid you not. She rang me, incandescent with rage, asking what the blazes I thought I was doing buying stuff without even consulting her. It was rubbish anyway, she fumed, because it doesn’t have a seat. How could she sit and talk to her friends if it didn’t have a seat?

I tried to explain that it was to use in the house, to replace her stick because it was more stable but a bit more compact than the one with a seat which she uses outside. There was no point in having it then she needed to do various things with it and without a seat she couldn’t.

‘But your stick doesn’t have a seat …’ I said.

‘No and so I can only sit in the kitchen or the drawing room because I can’t get in and out of the chairs anywhere else.’

Fair point but she doesn’t go anywhere else and she uses a shower stool I bought her (God bless you second hand shops in Galashiels). Sometimes though, Mum’s now is not the same as ours. I think she was at some point where she needed a walking aid but was still quite spry and doing stuff about the house. Things like cooking, and sending and replying to emails on her computer. She hasn’t done any of that for ages. I hadn’t properly clocked that her perception of when she is is changing, or how extensive her dementia is because she’s still so normal to talk to … usually.

I asked her if it might not come in handy?

Anyway, She told me in no uncertain terms that it bloody well wouldn’t, that it must be packed up forthwith and sent back.

After gently explaining to Mum that we had ordered it together and that she’d had a very hectic week and must have forgotten, she finally simmered down but wasn’t keeping it, oh no, she wanted it sent back and replaced with the version that had a seat. Now.

This is where I cocked up. The way you do this with a demented person is not to set them right on the facts, you just say, ‘oh dear, they’ve sent me the wrong one,’ or ‘oh dear, how did I manage to order the wrong one,’ and leave it at that. It would have saved a lot of angst filled explaining.

Never mind, let’s get on with it shall we. I’d bought the thing online with her debit card, because I have power of attorney, except the bank don’t know that or they won’t give us a card so I did it pretending to be her. Easy then, I’d ring them up and sort it out but … they were not answering the phone unless it’s really urgent because … covid. Ugh. So I emailed them. Yes they would take it back. No they would not be able to replace it with another one with a seat, have me pay the difference and swap one for another. Oh and the cost of return would be £16.

Sixteen quid! The fucking thing only cost £48.

Bollocks.

The Carer who’d found a similar one hadn’t brought it round yet and seeing the chat about this on the … well … chat, she asked if she should.

‘Yes,’ I said, ‘but hide it, she may come round to using it. We’ll have to see.’

In the meantime, since the company that had sold me the new one didn’t have the one with the seat in stock I just thought it best to hang fire for a bit. The carer packed the new walker away and hid the box away where Mum wouldn’t see it.

Two weeks on, and during this week’s visit, the Carer told me that she’d managed to get Mum to use the second hand one for a bit on Monday but she’d suddenly refused on Tuesday. I thought I may as well give it a go, so I wheeled it in to the drawing room and asked her if she’d like to try it. She quite liked it but wasn’t sure because … well because she uses her stick to pull things closer, pick things up, press buttons and light switches she can’t reach, point at stuff etc. That said, after a short test run during which she really quite liked it, I left her with it by her chair.

Thursday morning and she told the Carer how wonderful it was and that maybe we should get it cleaned up.

‘We could but d’you know Mary ordered you a new one, I think it arrived the other day.’

‘Did it?’ Mum asked.

The Carer said that yes, it had and asked if Mum wanted it set up for her.

‘Oh yes please.’

Apparently it is now a hit. So much of a hit that, nine days on from ringing me in a fit of something approaching rage at its arrival, she rang me to say thank you and tell me how wonderful it was.

That, people, is dementia. Light and shade, rain and sun, on and off: random.

The obligatory seal pup picture taken on the beach I was actually at this weekend. 🙂

On a personal note, remember I did an entire day’s metal detecting without sitting down for lunch the other day? Yeh. Well that was a bad idea, I did my back in. It recovered after two days so, happy that all was well again I did more metal detecting on the beach (only for an hour and a half) went for a walk etc. We saw a seal pup and I took the obligatory Norfolk (well … Suffolk) coast seal cub picture. Awww or what. Then we went and had supper at friends. At which point, back fully recovered, I was able to remove the pain relief pad while I was there and felt oh so much better. What a relief.

Or not.

The next day, the back pain was back a little and starting to get a bit worse, but nothing major. Thursday morning. Arnold’s dingleberries! It was hideous! Friday; also hideous, and even today it is still evil. Needless to say the first day anyone who might be able to fix it can see me is Wednesday next week. Of course. And needless to say the first day I can see anyone is Friday. It could be worse … I had a club dig scheduled for tomorrow, which I don’t think I’d have been able to go to, and now I have a week to get better, or at least, well enough to do an afternoon of metal detecting without three days of scream ab-dabs afterwards.

The pain levels have been pretty grim. Up there with breaking my collar bone in the constant nature of the pain and, when it has subsided a little, the ease with which the slightest of movements will set it off. Also, at the risk of being a bit personal here … weeing. Or more to the point wiping. Fucking hell that hurts. How, in the name of the almighty do women with chronic back pain wipe their arses every day? Is there a lot of screaming? Is there a … surgical device? Jeepers. It’s alright for you blokes, all you have to do is wave it about a bit and shove it back in your trousers. We ladies have to get our hand a great deal further round and fuck me that smarts. I never thought I’d envy the ancient Romans their communal loos with the sponge on a chuffing stick, but frankly, even the prospect of wiping my personal bits with device of dubious provenance that had been used by multiple others – and probably not washed particularly well – would be preferable to the pain of doing it my bastard self. I have, at least, reached the point where I don’t dread going to the loo but it’s still about as much fun as sticking cocktail sticks into my own eyeballs and possibly slightly more painful.

Yeh so … maybe little bit too much information there. Yeh. On that note … I’ll leave you. Don’t have nightmares kids.

____________________________________

If you need to take your mind off that last paragraph …

You could always pop over to Kobo or WH Smith and download my latest audiobook from the Kobo Sale. It starts officially on 9th September but it has been reduced from £5.99/$6.99 to £2.99 and $3.99 the kobo link, among others, is on this page … here.

Small Beginnings is not quite out at all retailers but getting there … slowly. More on that story … here.

Read by Gareth (The Voice of K’Barth) Davies to the usual extremely high standards. If you want to see what it sounds like, you can catch a listen to Chapter 1 from my soundcloud page here. Or click on the picture.

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Tagged as advice from writers, an author with children, arthritis, audio publishing, author blog, author parent, book marketing, chronic pain, comedy fantasy fiction, creative book marketing, dementia, early dementia, fantasy fiction, full time mum writing, humour, K'Barthan Series, K’barthan audio, M T McGuire, M T McGuire audiobooks, M T McGuire new releases, marketing a book, McMini, new book releases, off topic, Other Creatives, sad, writers

29 Aug 2020 · 6:16 pm

Treasure

Yeh, I know it’s about five hours after the usual time but things got out of hand.

Two different types of treasure this week. First the lovely one that is McOther. Ah bless him. This week he was sixty, a thing that I find almost incomprehensible. He looks about 45 if that. Anyway, in order to mark the occasion I decided I needed to do something. After a bit of discussion with a friend, and McMini, I hit on a series of days out at air museums. I’ve offered him four and he can pick one although there are a couple that I might buy for all three of us at Christmas so long as enough people (or anyone) buys some of my books.

Meanwhile our ‘bubble’ decided we would meet and sort out a birthday evening along the themes of Not France. But clearly the ‘not’ was the same as the ‘nothing’ in Nothing To See Here. We had tarte flambé and wine, obviously. Quite a lot of wine. And then we had Scottish salmon, as a nod to his country of origin. Then to acknowledge where he grew up, we did a Canadian delicacy. Tortine which was, basically, meat pies. I got the recipe from my Canadian sis in law.

As you can imagine, not much of the organising here was done by me. It was very much a group effort because my inability to arrange … well … anything much is known and understood by all our friends. However, I was tasked with the pies and some salmon bites for the champagne. In order to ensure I got this right, I bought everything I needed at the market on Saturday, and from M&S on Sunday. The salmon things were easy to assemble, the pies looked like they were going to take a bit more cooking. For starters the ingredients was all in cups. That’s fine because I have purchased some cups or at least, North American cups because I believe Australian cups are different and New Zealand cups different again.

As a metric raised child with imperial parents I can do lbs and ozs and I can do kg and grammes. Cups are weird but so long as they stick to cups and teaspoons and don’t start suddenly throwing in 200 grammes of something I’m usually OK.

The recipe called for shortening, which I have never heard of until recently, but now I know this one! It’s lard. So I went up to town and M&S had something called baking block, which looked more like margarine when I got it home and, more worryingly, seemed to comprise mostly palm oil. Fucking Nora, I’m killing the planet. Never mind. Press on.

Casting an extremely blind eye to the rain forest murdering ‘lardgerine’ I was using I consulted the recipe and hit a snag. It comprised two cups of flour and one cup of shortening. I looked at the green plastic scoop and at the thing that was not butter but looked like a pat of butter on the counter. A thing that was, undoubtedly, very solid. How did I cupify that? Did I just squelch it into the plastic measure or what? Maybe I was supposed to melt it. Except that I didn’t really know what I was making, but the recipe was echoing somewhere in the dark recesses of my brain. Yeh. If this turned out to be bog standard pastry I was making here, melting it would be a bad idea.

In the end I decided that if it was two cups flour and one cup shortening it must be, basically, two to one. So I tipped the flour into the scales, worked out there was roughly 8oz and so I put 4oz of shortening in. Though I say it myself, the result was a reasonably decent bash at what did, indeed, transpire to be shortcrust pastry. It may be that if I’d found some actual lard it would have been proper meat pie pastry, you know, pork pie style. Not sure. It was alright though. Sure, I could have got some JusRoll but sometimes it’s nice to make this stuff and have it without all the extra additives and shit.

The mince bit of the recipe was much easier; mostly in lbs and ozs and standard tablespoons etc with the odd ‘cup’ of chopped onion or whatever thrown in. Having successfully combined the ingredients for the pie stuffing and made what I have to confess was a really quite decent filling, I got to the bit where it said I should put two tablespoons of corn flour.

We had cornflour. I knew we did. McOther had bought it to thicken something or other a few weeks previously but he’d also tidied the larder so I couldn’t find it. There was none. Now, I only have a certain number of ‘spoons’ on the energy front and it’s not many. I’d used most of my energy quotient for that day going up to town to get the ingredients. Any left I was using for cooking. Furthermore, I was at a point in that cooking when I couldn’t easily leave it. I was going to have to improvise. OK so we didn’t have cornflour but we did have custard powder. If you look on the side of a tin of custard powder, the ‘ingredients’ are corn flour, salt and yellow dye. So I put two tablespoons of custard powder into the pie mix. That was great, except I’d already salted it so now it was way too salty.

Oops.

Only one thing for it then, more water and wine in the mix. Luckily it didn’t do it any harm and – bonus – meant I didn’t have to produce the traditional gravy to go with!

The pies came out looking a lot tidier than the kitchen.

Eventually I managed to bake a couple of experimental pies and hit on which dishes I’d use. All my round biscuit cutters, the ones I was going to use for the pie crusts, they’d moved to somewhere else during the great larder tidy and of course, when pressed, McOther had long since forgotten where. Luckily we had one of those rings they press your veg into when you go to a posh restaurant and have potatoes dauphinois or something in a perfect circle. So I used that for the lids. For the Scottish pie style hole in the middle, I found a thing to put in the top of olive oil bottles which had a little plastic stopper that went on top. The stopper was the perfect size for cutting a small hole in the middle.

Eight decent pies and a dodgy experimental one at the front.

Come Wednesday morning, when the chips were down, I managed to produce some reasonably decent looking pies to heat up that evening. I glazed them with an egg and ate the rest of it, scrambled, for lunch afterwards. I’d already tasted one of the experimental pies and enjoyed it but that doesn’t always mean much when serving them up to Michelin star husband and friends. When I cooked them that night, because they were a bit of an unknown quantity and we’d already eaten a lot of other stuff, I cooked four between the six adults. They made me go and cook two more. So all in all, I think they were a success. So much of a success that I might even cook them again.

Next lot of treasure … some stuff I found. I have upgraded my metal detector. Or at least I have a new one on sort of HP from a friend. It’s like my old one only lighter and even easier to understand.

Yesterday I went metal detecting. I learned many things, principally that my new rain mac is not waterproof, that my waterproof trousers are also no longer waterproof and that detecting all day is probably too many spoons. But after searching some areas where the farmer wanted us to search for lumps of iron, during which I also happened upon a rather lovely watch winder, we went and had a quick hour and a half looking on a field where there was less iron to remove and some other, rather more interesting non-ferrous items as well.

Here’s a picture of the watch winder, which looked rather straightforward but turned out to be rather pretty when I cleaned it up.

For the non initiated, iron usually equals junk. Not always, but a lot of the time. To my delight, the new detector gave me a very accurate picture of what was what. I also found the fifth best find of all time for me, a silver thimble from the 1650s. We’d just been discussing our favourite eras as we walked to the field and I’d said I thought it was the 1600s for me because it was such a turbulent century.

Because the thimble is over 30o years old and more than 10% precious metal it’s actually classed as ‘treasure’ officially.

That means I have to hand it in to the representative from the portable antiquities scheme. I may get it back or it may be purchased by a museum for about £10 because it’s worth seven tenths of bugger all. But it’s interesting because it’s rare. Many of these were handed to the commonwealth and melted down to make money so there aren’t so many left. It’s an interesting thing. I was chuffed because I worked the date out from the type of writing and the fact it reads, ‘Fere God Truly’ which, I felt, pointed to turbulent times. I also found a James 1 penny, too, which was interesting.

This is my second find that is officially ‘treasure’ the other was a bit of a silver Saxon strap end. I think it takes two to three years for the process to go through.

Well … it is the civil service and government after all. The little thing next to it is a James 1 penny. It’s a pity a bit’s broken off because the detail is lovely.

The new detector is called an ORX and bears more than a passing resemblance to the SSS Enterprise, which amuses me. ORX is usually pronounced as the letters in turn, an O-R-X but actually, if you say them, as if they’re a word, you get orcs.

The orcs found me treasure. Bless ’em. That’s a first for us all. Even so.

Woot.

I have done very little new writing this week but I am editing Too Good To Be True like a demon. I am struggling with a canal boat chase though. Canal boats and barges here in Britain have a top speed of about 4 knots. A knot is about 1.2 something miles per hour.

As you can imagine, I loved the idea of making K’Barthan barges and canal boats the same, and then having two parties in boats that go at walking pace in a grim-faced, slow-motion chase to the death. I want people to run along the tow path throwing bottle bombs and our hero to smack them back with an oar, I also think he should probably give them a tow with his snurd, except I don’t think I can quite jemmy those bits in. I have to have the folks on the barge handing him something, in full view of the pursuing hoards. Naturally, that’s thing the ones chasing are after, so our hero can then fly away to draw off any airborne pursuit. Which he does. And they then disappear into the … fog … night … trees … tunnel? Sheesh. I dunno.

The folks in the boat live on it. It’s their home so they can’t give it up. However, they can give it a make over so it looks completely different in about thirty minutes. They can’t get caught at that point because I’ve written a show down that I really like – mainly because it involves Big Merv. I really like the whole book. No-one else will, but I do. Which makes it tricky.

Also, the canal boat chase is something I have to write straight, because otherwise it won’t come out funny. And I love the idea that some people will see it in their heads, see the incongruity of it and laugh their heads off while others will completely miss that. But if it still works it won’t matter and either path will be fine.

It’s tricky though. I might have to rest it again for another couple of months.

__________________________

If you’re impatient for the next book in the Hamgeean Misfit Series why not try listening to some of my books on audio.

Read by the distinguished and extremely talented Mr Gareth Davies, who has turned the K’Barthan series into a bit of a gem. You can find out more about them here: https://www.hamgee.co.uk/audio.html

Also, Small Beginnings is on its way to market in audio format. Once again, read by Gareth who is a bit of a dab hand at comedy. It’s available on Kobo already and should land at the other retailers soon.

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22 Aug 2020 · 11:49 am

Arnold’s pants!

Blimey but it’s windy here. Must be all the fruit I’m eating. Oh ho ho. The weather is pretty blowy too. Storm Ellen, I thought we’d had Ellen after Dennis but thinking about it I think that was some Spanish one with an exotic name from far further down the alphabet that muscled in.

This week I’m feeling a bit bleargh. I dunno why really because, as things go, I’ve actually achieved a bit of a score.

McOther is 60 next week and I wanted to do something to mark the occasion. Except with covid that’s hard and also McOther, himself, while he likes to be made a fuss of, also, does not like to be made a fuss of. So if you’re going to plan some jolly birthday japes for him you do rather have to go about it the right way. This involves tact, intelligence and subtlety so as you can imagine, I’m pretty much bollocksed from the get-go on that one. I toyed with the idea of buying him a trip in a Spitfire. They do those just down the road at Duxford. Trouble is, while I could, just, run to it, it would wipe out my entire savings … and I have another £1,500 headlight pending for next month. Thinking further, I hummed and haaad about casting the net wider. I reckoned that a fair few friends and colleagues would have chipped in five or ten quid reducing it to a more manageable dent.

However, I am piss poor at fundraising so I’d have probably raised about thirty quid and McOther would have been unimpressed if I’d blown my savings. While I’m scratching my head over this conundrum. Up pops a friend who knows someone who works at Duxford and she suggested some other tours and experiences which this lady is involved in. After a bit of a search, Bob’s your uncle! I think I have found several things I can offer him which he would love. Two or three options at Duxford, one at Biggin Hill, all look completely brilliant.

Next, with a short list, came the oh-Lordy-which-one moment. I’ve narrowed it down to three … possibly four … although unfortunately under 15s aren’t allowed on one, and with the covid malarkey, Duxford aren’t answering their phone so I couldn’t ring and ask them for details (ie does it apply to all their tours or just that one and is it an insurance exclusion, or is there scope for accommodating an extremely sensible twelve year old). I will offer him all three, some as a family day out and some as just him and he can pick the one he wants. And there we are. Some things he might like! Woot.

Then there is the party. ~~Boozy~~ Wine dinner and staying over at some friends who we ‘bubble’ with. Yes I have to cook some things I have never cooked and they will probably taste like shit but luckily someone else is making the cake and I’m not doing all the food. Much of it will be produced by People Who Can Cook! Phew! So Real Life wise … mood nervous but at the same time, cautiously optimistic.

Oh no …

On the books front. Things are a bit crap to be honest. Nothing is selling very well at the moment and I’m trying to organise a free first in series box set for comedic science fiction fantasy. I am extremely nervous. I’m shit at placing stuff like this in the marketplace because I suck royally at keywords. Also, I need to get some covers done and I can’t really afford to ask my usual lovely people to do that so it’s going to be downloaded Creative Commons NASA images with big hand drawn letters … and a unicorn in a space helmet, or possibly Pegasus sans space helmet saying ‘Yes! I achieved escape velocity. That’s magic.’ Or ‘I bet you’re wondering how I can breathe up here, right kids?’ With an astronaut in a space suit going, ‘that’s magic.’ Or hopefully something else that’s actually funny. Anyway, it looks as if there are six of us … hopefully … unless one pulls out. I might do one more appeal for entrants! Ideally we need to be seven or eight, I think.

Writing isn’t going very well either. I haven’t. Not for ages, because Real Life. The only time I’ve had to write this week is now and instead I have to do this. And it’s not going well anyway. The K’Barthan short that’s turned into a novel is a bit of a nightmare and I shouldn’t have called them shorts because if they were called ‘K’Barthan Extras’ I could have put in for a bookbub on them but because they’re ‘shorts’ I can’t. Arnold’s pants! Head desk. I am a total moron. But I’ve reached that point in the process when you are doing the first edit and you look at it and think, crikey this is awful. But of course when you’re mid edit that’s usually because it is. I have a canal boat chase. I so want to keep it in because frankly, few things seem funnier to me than the idea of two vehicles, each with a top speed of 4mph, locked in a grim pursuit to the death. It’s just that … how do I get rid of the people running along the towpath and won’t the bad guys have airborne snurds and just … yeh, heavy on the suspension of disbelief unless I can think of a bloody good reason for it to be just the boats … you get the picture.

Also I’ve been redoing some of my auto responders. The audio ones. So they are now in alignment with the ebook ones in that they start with the mailing list exclusive free book, Night Swimming and then give people Unlucky Dip and then go on with various other bits and bobs.

Revamping these involved looking at my ebook auto responder set up because that seems to engage people quite well. At the end of it, quietly gaining entrants, I have a survey. The idea is that I can find out what readers love and … you know … give it to them. One of the questions asked is how many of my books they’ve read. The people who answer this thing have all been on my mailing list at least a year so by the time they are invited to fill it in so, in theory, they should have read some of my books, right? I mean, otherwise, what the fuck are they doing there? When I examined the answer to that question it turns out the bulk of them have read one or two books – ie the two free short stories I’ve given them – and most of the rest haven’t read anything. Weirdly, I have people on my mailing list who send me chatty, supportive emails who have never read one of my books. I just … dunno what to do.

Worse, one total bastard has joined my list, downloaded the mailing list exclusive and posted it for sale on a pirate site, which is a bit of a shitter, especially as I can’t even sling the fucker off because I don’t know who it was.

Conclusion, over half of the people on my mailing list are other authors who have joined to see what I do. Solution, shut the fuck up about your mailing list on author marketing chat groups. Send them more excerpts and deleted scenes and keep pointing the people who pathologically refuse to pay for a book to their local library or local library’s ebook app.

I can’t do excerpts with the audio, sadly, although I can do interviews with Gareth. But I can with the ebook people. And I have the perfect book to experiment with because it achieves precisely zero sales and it was doing quite well before, when there were three excerpts from it on my auto responder. Then I can look at the survey in a year’s time and see if the number of people actually reading any of my books has risen.

Oh look. I’ve just solved my own problem. That’s jolly spiffing.

Onwards and upwards. I think the pressing thing, now is to write more books. And not books about bloody K’Barth because I need a break and if I want one of those I need to write something the normals will read. K’Barth is too complicated, too rich, too much effort for most readers, I think. It has to be simple, straightforward funny-in-space. Or something. But I have to find a way to write something that people will pick up and read, you know, on a whim rather than because it’s the last thing on their kindle and they are desperate, or being forced at gunpoint.

______________________

Well there we are. If you are bored and at a loose end you could always try reading one of my books. They are a bit weird but I promise they are more interesting than reading a telephone directory … just.

Or alternatively, there’s this lovely box set of first in series which includes Few Are Chosen and a lot of very much better, more interesting books by other people. The stealth approach has worked really well for me. People have read and enjoyed my book from this. In fact most of the people who go on to read my other books do so because they’ve read the first in series that I included in this one.

You can find that here: https://www.hamgee.co.uk/infofa.html

That’s all for this week. Next week will be hectic and I will be on the road so there may not be a post. Just giving you the heads up! Until then, hope you have a relaxing week.

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4 Jul 2020 · 12:40 pm

Dementia too, because obviously dementia once wasn’t shit enough

Yeh, I selected that heading from Whiny Titles R-Us but it does sum up the way I felt at the start of this week and the feeling I’m trying to describe.

The slough of despond; rain and yellow lines …

Bits of this week have been tough. I’ve had a couple of down days, mainly because I suspect I have had a mild UTI but also it’s the time of the month when I can’t remember my own name without cue cards. Worse, I’d forgotten to put the morning HRT gel on for two days running and that does make a difference. The traffic is back to normal so there has been the usual 40 minute delay along the bottom of the M25 on the way to Mum’s. This last two weeks, the journey time is back to three hours down and two and a half back, so long as I am on the road at half two sharp.

Worse, I’ve been finding it really hard engage with Real Life. To care about the little things that other people need me to care about. Silly stuff. McMini’s bedroom curtains need hemming but it’s difficult to do that while he’s in there with them attending his virtual lessons. It’s the last day today, so that’s fine, I can do it tomorrow, but it’s been a long time and both he and McOther have been eyeing them impatiently. Meanwhile, McOther has a favourite beanbag. The material is completely rotten and sewing it up is a thankless task that I have to repeat every three weeks or so, unless he does it. It’s bust again and so the choice of thankless tasks was twofold: try to get him to understand that the material is rotten, which, itself is a hiding to nothing. Or I fix it again when I know it will break in a few weeks. But fixing it is a duty of love, so perhaps it’s a bit less pointless than it seems. Quietly, without saying so, I know McOther feels unloved if I say I’ll fix it and then take ages to deliver. It’s not good to feel so meh I can’t do anything. More on that story later.

This Wednesday, then, I was not in the right place to drive 288 miles, not even in a Lotus. I felt unbelievably meh. I was teary about the state of Mum, teary about the state of myself and feeling miserable. Then the radio proceeded to play some of my favourite songs. Things which are in my record collection but which I haven’t heard for ages because most of my music equipment assumes that anything I’ve ripped from my own CDs or vinyl is a pirate copy and refuses to play it.

Hearing all these songs again, it seemed that something out there in the ether was trying to tell me to cheer up. Finally one of my very favourite songs as a teenager; Big In Japan, by Alphaville came on. Despite being in very slow moving traffic jam, the gauntlet was thrown down. I was going to sing. I rolled up the windows so, in theory, nobody would hear me, jacked up the volume and joined in. This involved full on pop star style gurning and a selection of ridiculous hand actions, I kept going, even when everything started moving. There’s nothing like giving zero fucks to cheer yourself up, and it did, at least for long enough to realise what was wrong.

You see, lockdown was quite easy, it was like a little six week holiday from the administriviative shit. I worried about Mum but I rang her every day and I didn’t have to go anywhere or organise anything except my books! I just hung out with the McOthers and sat around in the sun writing. Woot.

Pseudo lockdown is insanely difficult. All the admin has returned with a vengeance, except because of Covid19 it’s about six times harder to do all the things you should be able to do by making a phone call. It’s the hard bits out of Real Life plus extra duties of lockdown, like the calls. All the hassle but none of the convenience. I did manage to get the scan I was due at the hospital but now I need to try and get the cat some shots. As usual, every piece of admin which should involve nothing more than a phone call involves several, and a protracted, drawn out effort, posting things, sending things. Case in point, I’ve just stuffed up my chances of opening a Barnes and Noble vendor account by transposing two numbers in my bank account number. It’s gone into ‘pending’. Probably forever. I can’t change it and I know their help desk is offline until after covid. I think they’re the only site where I have to have a W8EN still too. Everyone else you can just add your tax number and it works. I don’t know much about it but I suspect I have to get another W8EN as mine’s probably expired. Sadly, I do know that this is a great deal more complicated than it was because Americans don’t really understand what a sole trader is.

Meanwhile Mum is still shielding so she can have a few people round but not everyone. The lady who cuts her toenails has started coming again. Yes, when you’re old and arthritic you can’t do that anymore and you have to have someone come and do it for you. The lovely lady who cuts her hair came and gave her an appropriately socially distanced ‘do’ this Wednesday as well.

However, a lot of her friends are shielding, too, or can’t come to see her because she is, so she’s still bored stupid. Hopefully, as the small things that structure her life return, like the hairdresser visiting and the foot lady, she’ll gradually be more grounded again. Just as Dad did, she thrives on social interaction. My fingers and toes are, therefore, crossed. Although I have to accept that there is no guarantee of this. Because I think the main source of my malaise this week was realising that Mum is going to take the same path as Dad. Her own version, but the same horrific journey into oblivion. And I’m going to have to walk beside her; because I love her, and because, if I want to be a decent human being, that’s what I must do.

Please do not feed the animals

As we take these first steps, I guess what struck me down, temporarily, was the renewal of that familiar pain. It still hurts. Even though I’ve done it before and I am aware of the cost. I should know by now. I should be strong. But I’m not. I really wonder if I have the courage to do this a second time. I don’t want her to die, I don’t want to lose her but I pray that she will enjoy a kindly easy passing before it gets too bad. Yet, at the same time, I know she won’t because that might actually be kind to all of us and God forbid that my family should be shown a scrap of mercy over this. Instead, it seems life brings whatever will cause the maximum amount of misery and pain to all of us. Sorry Mum.

I have wondered about consulting my doctor and seeing if some medication might be in order. The trouble is, I’m pretty certain that any kind of medication for depression will merely make me even more forgetful than I already am. And since three quarters of my insane frustration is with my inability to remember a single fucking thing for more than about two and a half seconds, I suspect it would be a bad idea. And anyway. I’m not depressed. I’m sad. There’s a huge difference. When Dad died, there was grief but the sadness went away. It was a liberation.

Now that Mum is showing more acute signs of dementia, it’s back. If you wanted to present me with the perfect storm of things I am shit at dealing with, there are parts of my life over the last eight years that would be an excellent fit. I can do level-headed, clear thought in a crisis. Yeh, I can do that. But long, slow, sustained suffering. No. Not very good at it to be honest.

As I sat there, singing in the car, I realised that I’d started to withdraw completely into inner space. I lost myself in K’Barth, where my characters were suffering but where, I knew, eventually, they would be OK. I made them suffer in the faint hope their pain would somehow alleviate my own. I gave them a happy ever after in the hope that maybe if I did that, I could have one. This is an approach which works really well for me, but, unfortunately, not for those around me. That was another cause of the misery, the misery I was inflicting on my very much loved McOthers. Withdrawing helps me but it hurts everyone else. Small doses then.

As I drove, something happened. I don’t know how, but something in me fixed it. The blinkers came up again and I saw what I needed to see. I saw what was there in Mum rather than what wasn’t there. I stopped seeing drudgery and saw small acts of love. And I remembered that I have done this before. And suddenly, I slipped into the coping strategy. Short bursts of activity. An hour at the computer and then half an hour doing something else around the house. Tiny steps. 10 minutes a day. Pigeon steps, inching forward one tiny step at a time. Lists. Lots of lists. Each project broken down into manageable tiny items which are ticked off as they are done.

Don’t be a … or maybe do be one … or work smarter not harder … or something.

Lockdown was a luxury. Lockdown afforded me big chunks of time in which to write. My work came on in leaps and bounds. But lockdown is over. I need to see the me time as brief moments of something else among the admin. I need to see life as peppered with acts of love, which is what the housework side of stuff really is. Except it’s a horrible phrase … very ‘putting out love and keeping it there’ but until I can think of something better it’ll have to do. And anyway, because it sounds like fake Oprah, it’s sort of funny and that helps. As for the worry about Mum and the trying to sort things out for her. I need to call all that something different too. Same thing? Ah why not?

Duty is a crushing, heavy suffocating word, calling it an act of love makes it feel a lot lighter.

It’s amazing how, always, always, always, holding onto your sanity is about how you look at what’s happening, how you frame it to yourself. That simple switch and I’m cheerful again, and reasonably happy. I feel the weight, for sure, but it’s lessened. Cognitive Behavioural Therapy, is a chuffing marvel. If you are struggling with anything heavy and millstone-like in your life, I urge you to look it up. I never cease to be amazed how I can actually do a PR/Propaganda job on myself. I know what I’m doing, I know I’m just putting a different slant on it, yet it works.

You may consign the coping strategies to the past when you don’t need them, but it’s slightly miraculous how quickly they came back when you do. I feel better, a lot better. To be honest, I still don’t really don’t know if I can do this a second time. But there’s no point in wondering. I swam through the dark waters with Dad and came out the other side. I’ll just have to take each stage as it comes, strike out into the void and give it my best shot.

_______________________

If you are feeling a bit meh, yourself, you could always pick up a good book! Indeed, if you’re feeling really lazy you don’t even have to read it. Choose one of the audiobooks and Gareth will do that for you. Indeed anyone who signs up for my audio mailing list gets two books free; Unlucky Dip and Night Swimming. That’s two hours of glorious K’Barthan lunacy for zero pence. Yep! Night Swimming comes later on, although I may switch it so it’s the story people get first. It’s just that suddenly I have very little time so for now it’s Unlucky Dip first, then a week or two and Night Swimming.

Anyway, Gareth played a blinder on both but the really lovely thing about it is that Unlucky was the first one he did and Night Swimming is his most recent. You get to see what he’s learned in the interim. So there you are, if do want a listen, just go here, sign up and they should both arrive in your inbox over the course of about three weeks: https://www.hamgee.co.uk/audio1fb.html

Unlucky Dip Audio Book

If you do join in, and it’s not obligatory or anything, but if you do, or if you have and there’s any stuff you want me to ask Gareth about how he did the recordings, let me know and I’ll ask him.

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30 May 2020 · 4:30 pm

Dementia redux; rinse and repeat …

It’s a bit of a mixed bag this week. On the one hand, life is getting slowly back to normal, people are allowed out to visit other people and I have been visiting my significant family member: my mum, for two weeks now. On the other, I’m gutted. It probably says a lot about me that I am actually sad that lock down is ending. I’ve enjoyed the absence of traffic noise, the friendly waves at people, and the laughter as we try to make crossing the road to avoid each other look a bit less pointed! I’ve enjoyed the walk every day and I absolutely loved the bike ride I had round town along smooth deserted roads rather than squeezed against the kerb, buffeted by endless streams of resentful traffic.

OK so the lappers/boy racers in their souped up 500cc insurance punishment vehicles were still driving round, and round, and round, and round, and the blokes on the big bikes that corner like a waterbed and have an engine note that sounds exactly how I imagine a whale fart does, but everyone else had stayed at home.

There was a day, a week and a half ago, where the traffic picked up again and I noticed this horrible petrol smell in the air. After wondering what it was, all morning, I realised it was traffic fumes. It smells of traffic fumes where I live, the entire time, and I never even noticed that until it went away for a while and came back.

The pace of life in lockdown has been slower. I’ve enjoyed the company of my husband and son and having time to write. There is much admin I need to do but I can’t because it’s lockdown. Hoorah. Next week I’ll have to find some bloke to come and look at a wall at my mum’s, sort out a donation to the place where Dad’s memorial service was held and re-arrange shots for my cat, my and my son’s dental appointments and a whole host of other jizz which will suck in my time. On the up side, hopefully my writer’s circle will be able to meet for our next get together. That will be wonderful as we are, all three, vulnerable, so it will be great to get together again. It was also lovely to have a socially distanced encounter with friends last night.

That said, I think part of the slight feeling of malaise that rested on the beginning of this week was about Dad. You see, after a year, when someone dies, you have a year’s mind. Which just means you think of them in church. Dad’s was last Sunday. I wasn’t in church and that was a bit sad. So sad that it caught me completely off guard. As I sat in the garden live streaming a service from somewhere, I burst into tears. After a while it wore off but I never shrugged off the sadness throughout that day. I should be remembering Dad, like properly, with prayers and things. In a church. But that was probably as much about how important a weekly bout of quiet time interspersed with the singing of hymns at an anti social volume is to my mental equilibrium.

Later that day, we had a zoom chat with friends which, strangely, left me feeling even more isolated. I’m not sure why, and then when I hit the shower, I started blubbing like the giant girl I am and couldn’t stop. I’m a firm believer in letting these things ride their course so I let it all hang out for a while and finally when the flow appeared to have slowed up enough, I put my jammies on and sat on the bed.

Vimy Ridge 100 years on

There’s usually a reason for outbursts like this so I like to try and work out a plausible explanation. Understanding it helps. It’s not going to stop weird stuff like that from happening, but if I can put my finger on a bona fine reason, it’s less scary. Partly it was a simple case of missing Dad. The further away I am from the well-meaning but cantankerous, Father Jack-like gentleman suffering from Alzheimer’s the closer I become to Original Dad. I shouldn’t say that both Dads were real, but one was the original and the other was like bad archeology. A wild guesstimate of the man constructed from the things that were left.

But the other thing I was missing was my mum. I realised that I was mourning for her as much as for dad. Lively, smart funny Mum, who read all my books, who knew all the family history, who could cook better than most of the restaurants I’ve visited. Mum who had a garden full of people, ‘you can’t cut the head off that, it’s Betty Leigh-Pollet’ she used to say when Dad demanded that a bush in front of the window be cut down so he could see more from his seat in the drawing room.

Now, on bad days, Mum has reached a similar stage of anchoring herself to the TV, as if it will keep her alignment with space and time. She now sits and gazes out of the window. She has issued orders and Betty Leigh-Pollet’s head has been cut off without a second thought, and ‘Betty’ looks none the worse for her experience. Mum’s forgotten who all the plants are. Sometimes she remembers, other times, only that she got them from somewhere, sometimes she’ll say that she got them from … ‘that nice woman, you know the one, lives up the road, had a husband called Roger who dropped dead in the garden.’ Sometimes I’ll be able to tell her, on the back of that, who she got them from, other times, I won’t.

She’s forgotten the things she couldn’t do. She’s back to fretting about earthing up the potatoes but at the same time, understands she can’t do it. Not because she’s remembered that she isn’t supposed to be digging like that, but because she still remembers that the potatoes are in a part of the garden that’s out of the range of her emergency help button.

‘How old am I?’ she asked me the other day.

‘Eighty seven,’ I said.

‘Good heavens! Am I really, I can’t be can I? What year is it?’

‘It’s 2020, Mum.’

‘Goodness! I thought we were in the 1990s.’

Mum hasn’t gone at all, she’s still very much as she was, but the changes are beginning to take place. Last week she told me she’s voted conservative all her life, she has no recollection of the fact she’s voted green in every election since about 1996. It’s weird. And it makes conversation interesting because I never quite know which Mum I’m going to get, the sharp as a whip, switched on Mum or the one who is convinced she and Dad bought their house for £40 in 1986 (they bought it for a lot more than that in 1972) and thinks I lived with her and my uncle during the war.

Sometimes, she’s more than much-muddled, as she calls herself – or very much-muddled on a bad day. She’s started having strange ideas, bizarre theories. Suddenly, after telling us, for years, that she’d like to stay in her house until she dies but that, after she’s gone, though it’ll make her sad, she appreciates we may have to sell it, she’s started talking about changing her will so the house is left to her oldest grandson because, ‘it must stay in the family, it must be protected.’ The point is moot, since selling it isn’t an issue and anyway, she ordered me to activate the power of attorney over her finances some time ago, which I did, because no way is she in control of enough faculties to change her will. But it’s kind of strange.

She’s been telling me she wants to take on an extra gardener because the lovely couple who are doing the garden for her at the moment, ‘can’t cope.’ One minute she is telling me the garden looks better than it ever has, the next she’s telling me that the drive must be tarmaced because it has grass growing up the middle. I did finally get to the bottom of this. She is worried she’ll die before her current gardening project is complete. It’s been delayed by lockdown and although she understands about lockdown and what it is, she’s kind of forgotten why the delay has happened and how to apply it to the garden.

Interestingly, she has been a bit more imperious with her team, too. Apparently there’s a lot more, ‘I want’ and a lot less, ‘could you please …’ I don’t know what to make of that. What I have ascertained is that she’s nervous, in some ways, but not afraid to die, and not afraid of dying alone. She’s worried about dying before the garden is ‘finished’. Although it looks pretty fabulous to me.

We’ve had the conversation about coronavirus. If she gets it she’d like to stay at home but she appreciates that she a) can’t look after herself and b) can’t expect others to put themselves at risk to do so … not even my brother and I, because we have small children who need their parents to stay alive. So she’d have to go to hospital and die alone. She’s totally alright with that. ‘I have a faith and John’ (Dad) ‘is waiting for me.’ It’s still a grim conversation to have but the point here is, that she can think stuff through, a lot of stuff, but not all of it.

She’s OK really, so what was I crying about? Well, it’s like this.

When your loved one gets dementia there’s a horrible dichotomy. On one hand you don’t want them to die because a lot of them is still there and you love them dearly and you want to spend as much time as possible with them while you can. On the other, you want their suffering to end (and yours, watching them suffer) and the only way that can happen is if they snuff it. I don’t want Mum to die. We still have wonderful conversations. I want that to continue. But at the same time, I’m exhausted, so exhausted with looking after Dad, her and Dad and now her. I’ve driven to Sussex every week for five years now. It’s nothing compared to what other people do, living alone with a profoundly demented person, being their sole carer for years with no let up, no break. It’s no surprise that, in couples where one is ill and needs cared for, the ‘well’ one nearly always dies first. But the fact is, for all the knowledge that I have it easy compared to most people in this position, I, me, find it hard. What’s more, my struggle is no less valid for being easier or harder than that of others, just as theirs is no less valid for being different to mine.

Another thing that may have hit me broadside is my position along the arc so to speak. You see, there are certain stages of the dementia journey.

Stage one is the place where your loved one is a bit forgetful, but functioning pretty much as they always have mentally. Stage one is the one where they suddenly forget the recipe for something they’ve made every week since you’ve known them. Or you get a all in church and rush out to find Mum calling in a panic on someone else’s mobile phone to say that she can’t remember the burglar alarm code. This is the stage when you can tell yourself it isn’t anything odd, it’s just ageing, a slight aberration.

When they are in stage one, you bury your head in the sand. It will be OK. It will be a long time before it gets really bad. They will die before they hit stage two. But deep down, even though you are hoping and denying your arse off, you know it’s more than a bit of vagueness.

Stage two is the place where your loved one starts to be a so forgetful it might be dangerous. In Mum’s case it was Christmas 2015, when one of the people who used to come and sit with dad arrived to find both my parents sound asleep in the drawing room and the turkey giblets, in a pan, in the kitchen, on fire. Mum had put them on to make stock and forgotten about them.

The worst part of that, as far as she was concerned, was that she really liked that saucepan. The lovely man who looks after their garden managed to clean it so it could still be used but something had happened to its bottom and it was never the same again.

This is the worst stage, in some ways, the one where you know they need outside help but they refuse to accept it. When you can see the storm clouds gathering but don’t know when or where the rain is going to fall, only that it’s coming. They want to remain independent and you want to let them for as long as possible but there is the very real chance that if you don’t get someone in to check up on them several times a day they will die in a gas explosion, a roaring inferno of their own making … etc … In Mum’s case we were unsure if it was a kind of senior baby brain from dealing with Dad, or a problem she had. Either way she was going to die from exhaustion looking after Dad or they were both going to die from her own hand from left on gas or something similar.

Stage two is the hardest part, where you have to convince the person with dementia to get someone in to help before the shit hits the fan. I failed, the shit did, indeed, hit the fan. I had to drive to Sussex at four am (the second of three midnight mercy dashes). I had one hour’s sleep and then I had to look after both parents, who could do little more than sleep and ask for food at various intervals (like two baby birds). My parents ate a lot of meals too, breakfast at nine, lunch at one, tea at four – usually approximately thirty minutes after the last of lunch had been cleared away – and supper at seven. Then, I had to spend two nights sleeping with my Dad while Mum was in hospital, which meant waking up ever 40 minutes to make sure he got to the loo and back without falling. We had some lovely chats and he was so sweet, but I was dead on my feet by the time I handed over to my brother!

We got someone in after a week to live with them. That’s when the extent of Mum’s dementia became apparent. She had enormous trouble adjusting to a situation she’d have breezed through even six months before, because she was already suffering from memory problems of her own. One of the things I particularly remember was her absolute adamance that it was the Carer who had burned the saucepan rather than her. She berated them for putting things away in the wrong place and not ‘where they’d always lived’ but ‘where they’d always lived’ was a fluid concept depending on whether she was in the 1980s, 1990s 2000s or 2010s in her head.

Stage two though, you can still convince yourself that they’ll die before you lose them.

Stage three is when you realise that the person you love, who has dementia, is leaving you. It’s when you begin to understand that they are not going to die before you lose them. Because since you’ve already watched it happen to your father, sparing your mother would be far too merciful.

Stage three is when you realise that yes, you are going to have to walk beside them. Every. Horrific. Step. Because there’s nothing else you can do for them. And it’s the point when you realise how much, exactly, that is going to hurt you.

It’s the, ‘father if it is possible, let this cup pass from me,’ moment.

That’s what I was having on Sunday.

Stage three is when the person starts to become a bit different, they suddenly like different things or their version of events is suddenly wildly at variance with the real one they remembered. I hate pistachio nuts. But I thought you liked them. No, I’ve always hated them. This after them receiving a bag with pure delight two week’s previously and then opening the bag so you can eat them together like naughty children raiding the larder before lunch (although that’s Dad rather than Mum). They may cling to a couple of stories they remember and repeat them again and again. I have a couple of similar ones that I always add to the ones Mum tells. Do you remember when we did …? Oh yes that was hilarious and thingwot says you did it on x occasion too. Dear thingwot. Yeh, thingwot is lovely, cue long succession of stories about thingwot. That kind of stuff. It works a treat and always gets us laughing, which is brilliant. I thoroughly recommend it as a technique!

This is the place where you discover disconnects of which you weren’t aware: that your loved one thinks you grew up together, for example. That’s lovely because it means they see you as part of the things that make up their entire being. But tricky when you’re trying to pretend you remember what your great grandfather, who died well before you were born, was actually like. This is the stage when you have to face up to the fact that they are not going to die before it gets any worse, that you need to grasp the nettle, get care for them, sort out a lasting power of attorney for their health and finances and generally prepare for the total loss of marbles that lies ahead. This, with Mum, has been so much easier because we were able to keep on a lot of the care Dad had. And while Dad was a wanderer, Mum seems to be more of a sitter. She likes to go out into the garden and potter in the greenhouse, but she doesn’t get agitated and wander off, not yet anyway (hopefully never).

Mum is in completely denial. The doctor is too. He is prepared to get her evaluated but would like to start any investigation with blood tests. She refuses to have them. I’d like to know what type of dementia she has, but if giving it a name scares her, I’ll leave it. I think she’s a bit sort of … well it’s all dementia, who cares which type I have.

Stage three, and usually, you will still be in denial at this point, still thinking that life will be kind and the person suffering will carry on like this for years without any further deterioration and then die a good and happy death, before it gets any worse.

You will be wrong.

This is where Mum is now, I think.

What does it feel like? A bit less scary but still fairly horrible. I know I can do it because I’ve done it before. I know what the stages are but actually, I don’t know how this is going to take Mum. Everyone is different and she is definitely different from Dad. On the up side, she seems much happier and much more ready to accept that she has a terrible memory or sometimes, if required, that it’s us who are all mad, not her. Dad, on the other hand, never swallowed that lie. It would have been a lot easier if he had.

But even though it’s a little kinder, a little easier, it’s so hard. I’m tired now. So, so, tired. For a while there, I’ve had a window on what it’s like not to worry much and an excuse not to take any action (thank you covid for that small mercy). Certainly this time, I seem to have switched off and retreated under a big layer of scar tissue. That’s probably not very good for my mental health but shucks, whatever gets you through right? And it seems to be moving faster with Mum than it is with Dad and I guess that’s … kind of … a mercy.

Stage four. This is where there is now something unequivocally, definitely, bizarre about your loved one. This is where most dementia patients disappear from social life. Usually it’s because they start doing something embarrassing. But this is where socialising them can really help them and keep them enjoying life. Because they will be enduring every last minute of this horrific end. It’s your job to make it as pleasant as possible for everyone involved; them and you. It’s amazing what other people will put up with for the sake of the person they knew before. Try not to be afraid. Many people will understand, many bar maids will laugh along as your father asks them to marry him, and will join in the joke when you explain that he can’t because he’s not a Mormon and already engaged to all of his carers.

This is where you start getting some places used to the dementia sufferer and working out who can’t cope and who doesn’t mind. In our case, the local pub, the local shop and the local church were all brilliant with Dad as was his brother. Doubtless they will be with Mum, too. It’s really important that the dementia sufferer can still socialise as far as is possible, even when the disease finally claims their faculties. Far more people will be kind and gentle than will be shitty. Also, this is the stage where you need to try and evaluate what is and isn’t possible with their particular methods of dealing with life.

They may not sleep well, or at all and that will make their symptoms way, way worse. They may wander at night. Dad did both, although he wasn’t mobile enough to wander so he just used to have a jolly good go.

You might see some of the unacceptable shouty stuff coming out at this point. Not much, just enough to be hurtful. I remember Dad shouting at me to hurry up when I changed his nappy and also getting massively angry at having to wait for a crepe flambé. Cardinal sin committed there, no non-stick pan which meant I should have cooked all the pancakes first and then done the sauce and flambéing. I remember being so upset because he was still quite normal so this sudden total melt down over waiting a few minutes for a pudding was inexplicable – not to mention painful.

If you see any behaviour like this, it means you’ve reached the point where you need decide how much of that sort of stuff you can cope with. If you know you can’t take that, 24/7 now’s the time to scout out a good home and get the dementia sufferer used to the idea of going there. It is wise to choose a home ahead of time, wise but incredibly hard. But if they turn shouty then, once the anger kicks in you will NOT be able to look after them at home.

Brighton’s over there somewhere

This is the stage where they may go from being absolutely OK with the idea of dying to looking at death the way a small child would. This is also the stage where you need to accept that they will not be mercifully taken before the disease takes every last vestige of their dignity because that only happens to other lucky bastards. But it’s also a stage where, at the start, you may not yet be certain where the disease will go. Not everyone gets shouty or starts telling nine year old girls they’d like to fuck them. But now is the time you have to accept and plan for the fact it may happen.

Stage five is the one where it ends. They end up in bed with people coming to turn them once in a while and spoon food into their mouths or in a home. This is the stage where Dad came back to us because suddenly, he got some sleep. By the end of his spell in hospital he genuinely could have come home to us. Except he couldn’t, because he’d have stopped sleeping again and it would have all been rinse and repeat. So he want to a really lovely home, but a home nonetheless. He knew where he was and more to the point, where he wasn’t.

The hardest thing is that, throughout all the stages, you will find vestiges of the person’s pre dementia personality. You will never lose your ability to love and value them as a person. You will never ‘get used to it’. It will never stop hurting. Even though there will be times when they say really horrible, hurtful things you will keep loving them.

I’m not looking forward to stages four and five with Mum, but at least I have more of an idea what to expect. Who knows, maybe the disease will be kinder to her than it was to Dad. I can hope, can’t I?

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Filed under General Wittering

Tagged as alzheimer's, an author with children, author blog, dementia, M T McGuire, off topic, sad, trying to be a writer, writer mum, writer parent, writers, writing

22 Dec 2019 · 11:21 am

Birth of The Prophet Greetings to one and All … and a mini whinge.

Yes, of course K’Barth has it’s own equivalent of Christmas. They celebrate the Birth of The Prophet, or The Prophet’s Birthday as the feast is also known. The Prophet was born on the darkest, dimmest night of the year – aren’t they all? In memory of His birth, K’Barthans prepare an enormous meal, with numerous courses and specific – mostly alcoholic – beverages, none of which particularly goes with the other. Does this sound familiar?

However, they don’t exchange presents, oh no, instead they present each other with pastry effigies of Arnold The Prophet, stuffed full of confectioner’s custard. Anyone who stumped up for a copy of Christmas Lites last year will have read about this in the short story I had in there. It was a truncated short though, I had to hack mercilessly at it to make the 10k word count and you know me, I believe in never throwing anything away, so I decided I would polish up the longer original version and add it to my current series and publish it at Christmas time.

Unfortunately, what with Dad dying and all that malarkey, I didn’t get it finished as quickly as I expected so it’s coming out in February, 8th February, 2020, put that date in your diary peps. If you’re interested, it will be up for preorder soon but, unfortunately, not yet as … Christmas … which is so much more complicated and a significantly greater pain in the arse than exchanging pastries, mwahahahargh! But fret not! If you do want me to tip you off when Nothing To See Here, is released/available for preorder you can sign up for a special email bulletin. If you haven’t joined my mailing list, you will receive no other emails. Yep. Unless I cock it up mightily, I will only tell you those two things. Nothing else. To sign up for that, just follow the link, below or click on the picture of the cover:

Tell me when Nothing to See Here is released.

And here’s the blurb, in case you wanted it!

It’s midwinter and preparations for the biggest religious festival in the K’Barthan year are in full swing. Yes, even though, officially, religious activity has been banned, no-one’s going to ignore Arnold, The Prophet’s Birthday, especially not Big Merv. He orders The Pan of Hamgee to deliver the traditional Birth of The Prophet gift to his accountants and lawyers.

As usual, The Pan has managed to elicit the unwanted attention of the security forces. Can he make the delivery and get back to the The Parrot and Screwdriver pub in time for an unofficial Prophet’s Birthday celebration with his friends?

Other news …

There are lots of things I wanted to say this week. I wanted to talk about racism and how stupid it is, I wanted to fact check all the U-turns the Conservatives have been accused of making so far and see if it really is that dire, I wanted to do a lot of things. But … Christmas.

OK, so this is where the upbeat stuff stops, so if you want to feel upbeat, this is probably where you should stop too. The next bit is honest, and a bit of a downer.

The thing is, I’m missing Dad quite badly, it’s not quite as grim as it was, I haven’t felt weepy for over a week now, which is grand, and splendid progress. I just feel down. The grief counselling has come through for the New Year, so I know that will help and I’m looking forward to it.

In the meantime, life. It’s like we are sliding into anarchy and extremism and I’m the only person in the world who can see. I’m so weary of it all. I can’t do it anymore. I can’t go on politely pulling people up every time they say something shitty about immigrants, asylum seekers, LGBT etc folks, disabled people, brown people or anyone different from them. I know what goes around comes around. If kindness and tolerance was trendy for a while then, clearly, we’re going to go through another phase where it’s cool to be a bigoted fucktard. Cool for twaaaats (sing it to Squeeze).

At the moment it feels as if the world is being run by the stupid jocks out of seventies movies. You know, the popular bully in the class in seventies films. The one who make our geeky hero or heroine’s life a misery until said geek saves the world using knowledge and science while the jocks who think they rock stand by with their mouths open. That’s right, the people in charge right now, the people being heard and calling the shots are the equivalent of Biff from Back to the Future.

Joy.

Once someone you love has become, ‘other’ be it disabled, mentally ill, whatever, it changes you for life. I met a couple yesterday, a man and his disabled wife. He was pushing her in a wheelchair and she was incredibly apologetic about getting in the way in a very small and pokey shop. They were both sweet, but he, especially, had the kindest, wisest face I have seen on another human in a long time. Here was someone who had clearly been the recipient of unending twattery from morons and doggedly continued to treat other people with kindness and dignity. Someone truly, truly good in a way that was impossible to hide.

Apparently people frequently have a go at this couple for taking up too much space and getting in the way. I had a bit of an oh Lordy moment, myself, trapped in a very narrow aisle between them and a pram and trying to get out of the way! Only last week, at the supermarket, the lady told me, they saw that one aisle where they had to get some stuff was really full. He parked her next to some things she wanted to look at and went to get the bits they needed from the packed aisle alone. While he was gone someone came along and wanted to get to something from the shelves by the lady. She was in the way, so instead of speaking to her, or even asking her if she could pass it to them, they just moved her. Without a word. As if she was a piece of furniture. Moved her out into the middle of the aisle and left her there.

How fucking rude is that?

This is Brexit Britain. It’s not Brexit, itself that’s the problem, it’s the fact that it’s given the handful of people who voted leave because they’re racist and bigoted the courage to think their Neanderthal, shitty viewpoint is OK. The courage to commit hate crimes against disabled people, to air views that are, frankly, pretty evil, and it’s made them feel entitled to do so. I’m not even talking people who think we need to look at immigration, here. We do need to manage immigration properly, you know, with thought, compassion and empathy. Not only for those who are wishing to move here (what on earth are they doing coming to our crappy little island) but for those among whom they will be placed. No, I mean people who are out-and-out vile and seem to rejoice in it. The kind of people who would call me a snowflake, simply because I have an imagination and, occasionally, use it to try and appreciate what it might be like for other people who are different from me.

Incidentally, lots of people call me a snowflake in jest and that’s fine. Let’s be clear, I don’t mean my right wing friends taking the piss out of me here, I mean the really scary people.

The fact we are standing at the top of the same hill, with Mum, as we were with Dad four years ago is probably not helping me to feel jolly either. I did have a brief respite, but I know what’s coming and it’s coming much faster with Mum. A few months ago, when Gareth the Voice first contacted me I played Mum the demo he sent. She read and loved the K’Barthan Series years ago, and we discussed how exciting the whole audiobooks thing was. By the time Gareth and I were speccing the voices, a month later I had one voice I wasn’t sure about and I thought I’d play it to Mum. Gareth had definitely delivered what I specced but … had I specced it right?

Mum has a very good marketing brain – she was director of a PR firm in the 1960s and that is some going in an era when it was considered perfectly OK for a client to refuse to work with a copywriter on the grounds of them being female. As a result, Mum and I have chatted about my writing in depth from time to time. I did branding, which was pretty similar to PR and she’s one of the few people in Real Life I can talk to about both my writing, and my efforts to market it.

When I mentioned the voice conundrum to Mum she said,

‘Oh yes, darling, I meant to remind you about that. I haven’t read any of your books and I haven’t a clue what they’re about, it’s awful. I’m your mother. I really ought to read them. Could you lend them to me?’

I was a bit thrown.

‘Uh … I can’t remember now, but I think you read them,’ I lied. ‘But it was a very long time ago, so you’re well within your rights to have forgotten them. I pretty much have. I needed to re-read them thoroughly to get up to speed for doing the audio,’ I told her, continuing to lie comprehensively, through my teeth. ‘Does anything come back if I remind you? D’you remember Ruth, or The Pan of Hamgee? Big Merv? Lord Vernon?’

She remembered the ones in my latest story, which is short enough for her to be able to follow it. But otherwise, that’s it. She’s completely forgotten about all of it. She’s completely forgotten so much stuff.

Already.

All of it’s gone forever.

Which is grim.

I was hoping, so hoping, that it was just the strain of looking after Dad but it isn’t.

One of the toughest bits about Dad is that even though he is out of pain, and, even though, as a Christian, I believe he’s gone on to somewhere happier, I still find it hard to look his suffering in the eye. I need to if I’m going to move on, but it hurts, it hurts a lot and I suspect it always will. And now I have to walk the same journey with Mum. A costly, painful journey. One that’s going to make my heart ache for the rest of my life.

Pain on pain, hurt on hurt.

Another three years of this. Minimum. Where, in God’s name, will I find the strength to do it all over again?

Um … yeh. Merry Christmas.

Never mind, I’m going to church now. With any luck, when I come back, I’ll feel better.

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Filed under About My Writing, General Wittering

Tagged as christmas, dementia, dementia aftermath, grief, Hamgeean Misfit, happy fucking christmas, K'Barthan Extras, M T McGuire, M T McGuire new releases, new book releases, new books, sad, The Pan of Hamgee, trying to be a writer, women writers, World of K’Barth, writer parent

28 Sep 2019 · 12:40 pm

A snapshot of blue …

It isn’t always like this, but I’m feeling a bit blue today. Then again, it’s probably only to be expected because I have, as we might euphemistically say, the painters in. But I’m going to take a few moments out to bang on about grief again because I suspect the way I’m feeling is pretty universal, so it might help someone to read it and see they aren’t alone.

As a human, I’ve always approached my life, and my future, with an attitude of mild interest, a kind of, ‘I wonder how this is going to turn out.’ That doesn’t mean I don’t try and mould my destiny at all, but I am aware how many other riders there are affecting the outcome of anything I plan. I hope my actions make a difference. Fervently. But I also think I’d be a fool to think I can realign the stars and guarantee anything about my destiny through my own efforts … well … you know … beyond how I react to what happens.

So my dad died. It happens to lots of people. And I’m OK with that and, more to the point, he was. It was his time, he led a full and wonderful life, he was loved … it was, dare I say it, beautiful.

The thing I am having trouble with is what happened first.

Losing someone to Alzheimer’s is really hard. There’s a strange mixture of emotion at the end where you’re glad their suffering is over but really want them back. There’s always hope, until they draw their last breath, that a miracle will happen and they’ll come back to you, that the gradual extinguishing of the light can somehow be reversed, the damage undone, your loved one returned. That you’ll find them again.

It can’t, although you might find enough of them. Dad definitely came back to us a bit at the end, I am in no doubt whatsoever about that.

They say that you don’t get over some things but that you do get used to living with them. That makes perfect sense to me. I try to give myself gaps to grieve, and in between, I tell myself it’s hormones, and yes, I am looking forward to reaching the stage when I no longer have a cycle, when Psycho Week, Misery Week (which is probably where I am now) Extra Special IBS Week and of course, not forgetting Brain Fog and Constipation Week all come to an end and every week becomes Mary Week. I do have a Mary Week once in every five and it is literally like being someone else, someone I really like.

Anyway, I try to convince myself that I’m busy or tired or hormonal but the truth of it is, I’m just sad. And I guess I’m learning that I have the strength to carry that sadness, which is nice, but at the same time, unfortunately, I’m not quite as strong as I hoped I was. Which is a bit of a shitter.

One of the things you can notice about people, if you look hard enough, is that those who are suffering or damaged are marked. They have an intensity, a brittleness about the edges, a burning brightness to their eyes that acts like a huge neon beacon over their heads saying, ‘Damaged Goods.’

Sometimes, I have to tell people that my dad died recently. It’s cringingly embarrassing because usually it’s part of an explanation as to why I’ve forgotten to pay a bill that arrived around that time, or pay in a cheque etc. I find it difficult to keep my voice flat. The emotion always creeps in and evinces an outpouring of kindness from strangers that is only reserved for folks they are very, very sorry for. Which is lovely but quite mortifying. I also find it really, and I mean really hard, to keep it together in the face of sympathy. No matter how hard I try to be dispassionate, they hear the emotion. I am always hugely grateful for their concern. But at the same time, it’s also difficult and embarrassing because there’s only a finite amount of time about which I can talk about it before I cry. I wouldn’t want people to stop showing sympathy though, or stop being kind. Because for all the awkwardness I feel, it’s also a wonderful and uplifting thing.

There’s very little time for sadness in modern life and even less in mine. Mum has dementia, someone has to run her financial affairs, pay the care team, make sure she’s OK. In some respects my weekly visits are a lifeline for both of us. It is wonderful to be able to talk to her about Dad. We discuss how we feel, how there was nowhere else for him to go, how illogical our sadness is when it was such a good death and when it was clearly a death he embraced. I think it helps both of us. Mum is definitely better than she was but she’s had a bit of a blip recently, which, I suppose, is another reason why I feel the responsibility a bit more keenly than I usually do, and feel sadder.

Typically, now he’s gone, it seems that my life is full of events and problems that I would have discussed with Dad. Things he would have been able to advise me about so I could have made sense of it all and it would have been OK. Interpersonal stuff. It’s a loss I would have felt badly any time in the last one and a half, possibly two, years but it seems a great deal worse now. I think it would be melodramatic and downright wrong to say I’m sinking but it’s definitely a struggle. And I’m so raw. Oh blimey I’m ridiculously raw and so easily hurt about other things. Everything makes me cry, I reckon if I was walking round with a thistle stuck up my arse I’d cry less.

Politics hasn’t helped. It’s like the loss of Dad’s goodness and humanity, the compassion and empathy in him has taken it out of the entire fucking world. This week Britain has stepped up it’s efforts to make a monumental tit of itself on the international stage. The jury who found Boris Johnson’s proroguing of Parliament illegal have been warned to wear stab vests for fear of nutters who are also pro Brexit.

And the two sides bang on at one another, the left getting all drama llama about Jo Cox so they can tell the right that they are heartless twats who don’t give a shit in a way that makes the whole thing reek of faux. The right are totally unmoved, of course, since the majority of them are heartless twats who don’t give a shit and I really don’t understand why the left felt that point had to be made, since we are all already aware.

In the middle of all this, I’m still waiting to hear someone mention the good of the people. Not ‘the will of the people,’ as decided by a ridiculous sham of a vote to decide which side’s lies were less plausible (but sadly, a vote, nonetheless) not who should be in power, not how much better we would be if x or y was in power. Likewise, I don’t want to hear politicians spouting off in the media for the benefit of sending a message to other politicians via the press, rather than because they have anything meaningful to say to us.

Wouldn’t it be great to see someone in Parliament who genuinely seems to be there to try and make life better for the British people rather than to feather their own nest? Someone who isn’t a plutocrat foisting left wing sentiments they can afford to hold onto people who can’t, or conversely, someone who isn’t a hedge fund manager, wholeheartedly buying into the vileness of the party opposing them; a party which continues to demonise the vulnerable, the disabled, the chronically sick as scroungers and weaklings, quietly passing laws to punish people for their disabilities, or chronic illness, or having dementia like my parents, as if these people are to blame for their own suffering. A party pedalling the view that anyone who is vulnerable is weak and that those who are sick somehow deserve to suffer and are not worthy of our compassion. A party that puts the view that, contrary to the tenets of the Welfare State, those less fortunate, or who have fallen on hard times are somehow stealing for us when they are given help. A party which is punishing the elderly for having savings and being careful, stamping on the fingers of everyone working or lower middle class who has dared to put a foot on the ladder. A party which is quietly dismantling the welfare state and the NHS while everyone is too distracted to notice by the circus of shite that is Brexit and all that goes therewith.

We need normal people in politics. Now. Because at the moment, for the most part, it’s just a bunch of rich, entitled pricks doing what they like. On all sides. Their wages alone put them into the top 6%, the expenses some of them charge probably put them into Fortune 500*. Only 8% of Labour MPs are working class. We need a proper mix and we need to hold them accountable, the trouble is, voting doesn’t seem to work so I really don’t know how we do that.

* That was a joke even if it does ring true.

All I know is that watching the different parties competing to out do each other over the lowest depths to which they can sink I feel like something inside me is dying. It’s like grief has taken my reality filter out and I can see every crack and fissure and smell the foetid pus below.

But then something will happen that snaps me back.

For example, today I had to explain to the lady in the building society that I’d failed in some duty of admin because the summons arrived while my dad was sick and dying, or possibly while I was on holiday just before, or maybe in the six weeks previously while I was sick as a dog with a massive temperature and road testing different varieties of antibiotics to get rid of a persistent chest infection. The minute I fess up to her, I know she’s seen the rawness. My orange neon ‘damaged goods’ sign is flashing. She nips out back and comes back with a leaflet.

What to do in a bereavement, it’s called.

‘There are numbers in the back,’ she says. ‘And your doctor can help you too.’

My doctor? Shit.

Is it that bad?

Is it that obvious?

Am I more damaged than I think?

OK so watching my father go mad was pretty horrible, but I genuinely believed that once it was over I’d bounce back. It’s happening but it’s not a bounce and I’m aware enough now that in many ways I will never be the same. I thought it would be a lot faster than this and I thought I would get over it all. I’m not and it’s going to be slow. I guess the hard thing is having to keep going, having to carry on paying the carers and doing the pathetic amount I do to keep things running – the care and gardening team do literally ALL of it but I still find my few duties tough. I probably need to look what happened to Dad squarely in the eye but if I do that right now I’m undone and I can’t be undone, because … Mum.

Or maybe I’m just humiliated that another person has seen the extent of the damage, noticed my brittle cheerfulness and angular edges. I am worried and grateful in equal measure. As I try not to well up at her compassion and kindness I remember what Dad always said,

‘And this too shall pass.’

Maybe that’s the thing that’s so hard. Grief is amorphous. It oozes about inside you like a liquid and leeches out where and when you least expect. There’s no stopping it and no answer. You just have to ride the storm and wait until you are used to it, or it goes. It’s not as if I’m the first person who’s lost a parent, or the last … It’s just … hard.

On Wenlock Edge the wood’s in trouble;
His forest fleece the Wrekin heaves;
The gale, it plies the saplings double,
And thick on Severn snow the leaves.

‘Twould blow like this through holt and hanger
When Uricon the city stood:
‘Tis the old wind in the old anger,
But then it threshed another wood.

Then, ’twas before my time, the Roman
At yonder heaving hill would stare:
The blood that warms an English yeoman,
The thoughts that hurt him, they were there.

There, like the wind through woods in riot,
Through him the gale of life blew high;
The tree of man was never quiet:
Then ’twas the Roman, now ’tis I.

The gale, it plies the saplings double,
It blows so hard, ’twill soon be gone:
Today the Roman and his trouble
Are ashes under Uricon.

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Tagged as author blog, author blogs, death, dementia, dementia aftermath, grief, M T M Makes a complete tit of herself, M T McGuire, off topic, sad

10 Aug 2019 · 11:53 am

More thoughts about grief …

Vimy Ridge 100 years on

This week we’ve been visiting a lot of First World War sites. On balance, this was probably less than smart, so soon after my father’s death. But in another way it was cathartic. Grief is a properly odd thing and sometimes it does you good to take a few quiet moments to have a snivel and let it out. You can’t sweep it under the carpet and pretend it’s not happening. That doesn’t help.

However, that said, it does tend to pop up in weird ways when you least expect it. Case in point, Dad. When Dad died it was the culmination of nearly fourteen years worrying about his mental health. He was calm, totally ready and for those few days before he left us, it was as if he’d come back to us. After his total loss of reason, and the psychotic stage he had returned to us a fair bit, in the home. He came out of the small boy stage and was a grown man again, struggling with his affliction in different ways.

In those weeks, he was calmer and seemed happier but looking back on it, perhaps it was because he’d decided this was the end of the road and resigned himself. I worried that he was fighting and losing. Looking back on it, I think it more likely that he was coming to terms with things and I was seeing the light and shade of his various moods as he worked through it. The thing about Dad’s death though, was that it was a really, really good one. People who loved him were with him, reassuring him and he was a man of faith, and while I’m sure he appreciated that reassurance, he probably didn’t need it.

It was a relief, for him and us, because it was the end of his suffering. It may look callous saying that but I remember waking up the morning after Dad had died and feeling sad that he had gone and that there really was no going back now and at the same time, also feeling as if an enormous weight of responsibility had been lifted from me and feeling happy for Dad (although as a Christian who believes there’s some kind of after life that might be easier for me than it is for some folks).

Now, I don’t know what I expected from the grieving process but it seems most sensible to accept it’s there and roll with the punches when it pops up. But I’ve noticed two things which might help other people.

Thing one: No matter how good the death, no matter if death was the only place to go and no matter if the death was a good one, you will feel incredibly sad. Not only that but if my own experience is anything to go by, you will feel way, way, sadder than expected.

‘But it’s your dad! Of course you’re sad!’ I hear you say. Well, yes, but I’ve spent the last eight or nine years, at least losing little pieces of my dad each day, and I’ve spent the last five years grieving for those pieces of his personality, facets of his sense of humour, things that gradually faded until I could no longer resurrect them. There was a horrible point where the jokes we used to have suddenly stopped working.

‘I don’t know why you think that’s so fucking funny,’ I remember him saying about what I’d thought was his absolute favourite joke between us. ‘Stop saying it.’

Various people have told me that, after an illness, you get the person back. I think I’m too brain fogged to get much back, my short term memory is completely shot, just yesterday I was chatting to McMini and he reminded me of something we did together, when he was a child, an event of which I have absolutely no memory. That is quite frightening because such a total and utter memory loss has never happened to me before. No matter that my diagnosis was hormones, I have some pretty deep set misgivings, in my own mind, that I have dementia, myself. That said, a friend (0lder) who suffered depression when her kids were growing up says there are huge tracts of their lives she simply can’t remember. She put it down to the medication, but it must have been stressful, and I’ve been pretty stressed for at least eight of McMini’s eleven years, maybe I it’s just that. Yeh, I’ll cling to that hope. If it isn’t, I just hope I can hold it together until Mum goes, or even better until McMini hits twenty one. That would be another eight years. Mmm … fingers and toes crossed.

What I was trying to say, after that considerable tangent, is that I haven’t got the memories back really, I still can’t remember anything much before the dementia (Dad’s) but I do have a much better conception of what he was like when he was firing on all cylinders; his cheekiness, his sense of fun, the things he loved and the things that made him laugh. I can remember his humanity, his compassion, his kindness – partly because his behaviour was the antithesis of many public figures today, not to mention the current behavioural ethos which seems to be that we should each be as big a cunt as we can be because it’s our right and we ‘shouldn’t take it’ from other people.

Which brings us to Thing Two: I guess the moral of this is simply that even if you are expecting it to be weird and trying to be open, not fret and accept the nature of the beast, grief still pops up when you don’t expect it and surprises you.

But after a death when it’s really a release and the person who died was clearly at peace and happy to do so, I guess I assumed I’d mourn less perhaps, or at least differently. I wasn’t sure what to expect, but when you’ve been losing a person for so long while they’re alive and grieving their loss has already been going on for some years I suppose I thought that the grief of the actual death would be … easier?

Or to put it another way, for all my trying to be open minded and take it as it comes, it seems I’d assumed that there’s a finite amount of grief and that I’d used up a good half of it while Dad was still alive.

I was wrong.

That’s probably worth remembering. Meanwhile, for now, for me, it’s head down, give it space whenever I can and wait. I’ll get used to it eventually.

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