Tag Archives: sad

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.

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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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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.

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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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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.

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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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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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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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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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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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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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The end

on top of a Down for a while

So here we are … it’s official. I’m a demi-orphan. Dad died, peacefully, just before eleven am on Saturday 25th May. My brother and I were on separate sides of the M25. My mother was holding his hand. In those last two weeks I had two visits to Dad where there was so much love.  He seemed way more lucid too, as if being too weak to speak very much had given him back some brain power to compute the world around him. And after he’d had the last rights he was totally content, peaceful and unafraid.

Dad stopped eating. People with Alzheimer’s do this but when it happened, in April, I was away. I returned form holiday in late April to dire stories from Mum of how thin and ill he looked. Before I visited him, I asked the lady who ran the home about it. She explained that his refusal of food was, indeed, a standard Alzheimer’s symptom. I asked her if this was the end game. She told me that it depended. Dad was frightened to try and stand, he feared he’d fall, so his rehabilitation wasn’t going so well and that meant, ‘some young whippersnapper’ (her words) did everything for him, dressed him carried him … everything. The only thing he had any control over, she explained was whether he said yes or no to food and drink.

So it was about control.

‘How long does this stage go on for?’
‘How long is a piece of string?’ she replied.

She went on to explain that, while it was hard to ascertain the exact motives, at this stage of Alzheimer’s there were three reasons people stopped eating; they’d forgotten how, it was the only thing they could control, yes or no to food, or they’d had enough.

‘It’s very difficult to say but I think your Dad falls into the third group.’

She explained that both she and the doctor who had come out to see him believed it was about leaving. That Dad had simply had enough of this life and wanted to go on to the next one. I asked what I could do and she said bring things he likes for him to eat, so I bought jelly babies, wine gums and Turkish delight for the next visit – three great favourites.

He was pretty dogged, continuing to starve himself for the next few weeks with the odd break where the temptation to eat ice cream clearly became too much for him. During that time I want to see him every week; a bad visit, a pretty good visit when we did silly waves goodbye and I left him laughing and then a completely wonderful one, where I sat next to him in the lounge and recalled stuff my brother and I had done. It was like talking to someone who was half asleep, he was very weak and couldn’t raise his head, so I angled mine down so our eyes could meet. I told him what his grandchildren were up to, my lad and the others, and he smiled and chuckled, and projected this amazing aura of love. There were points where he fell asleep and I sat back and gazed out of the window, at the downs and Cissbury ring but the love thing remained. Then he’d wake up and I’d start recalling stuff again.

I’m a bit mithered about what I’ve told you but I think I mentioned that one visit was very bad, the first after my holiday. Dad told me to go away, so I held his hand and explained that he had a daughter and it was me. He changed then and was happy to let me hold his hand but there was still no response from him. It was difficult to get the measure of this new unresponsive Dad so in the end, I got out my phone, and Gutenberg, and looked up a book he used to read my brother and I at bed time, The Fierce Bad Rabbit by Beatrix Potter. I read it to him.

Dad made no sign of enjoyment but Maurice, next to him, clearly loved it. And next to Maurice was a gentleman sitting very straight with his hands on his knees staring into space. I wasn’t sure if he’d heard or not, until that good visit, near the end, with the gaps where Dad nodded off. In one of the gaps I sat back and looked over at the fellow who was sitting straight up. He was staring straight at me and then, very slowly he raised his hand and gave me a thumbs up. I don’t know what his condition was, so I’ve no idea if he was a simple Alzheimer’s sufferer saying hi or someone who fully understood how hard that previous visit had been and was giving me encouragement. Whatever it was, it brought a bit of a lump to my throat for some reason. I gave him a big smile and a thumbs up back, then Dad woke up again and we carried on.

Five days after that visit, on the Monday, is when I got the first call for the deathbed scramble I described in my previous post. Dad got the last rites, which we knew was important to him, and I felt that I was incredibly lucky that I got to say goodbye with ADBA even if it was three days beyond that before Dad actually left us. Strangely, that feeling of connection I described with Dad didn’t actually go, it stayed there, quietly in the background.

On the Friday, I got a call from Mum saying they didn’t think Dad would last long. I confess I cried on the phone and told her that I couldn’t make it that night. I prayed, sort of, only to Dad, trying to send him love and good thoughts and explain that I’d see him the following morning. McMini hadn’t seen me for four days, then, when I’d finally returned home on the Thursday, McOther was out. He begged me to stay Friday so we could have a family evening together and go to Sussex on the Saturday morning. I’d already said goodbye to Dad so any thoughts of going to Sussex that night evaporated and I agreed.

That Friday night I got a message on the carers’ chat group. Mum had rung one of the carers, worried that Dad would die when she wasn’t there. The home were brilliant and had promised us that when he became really bad there would be someone with him round the clock. They’d also told me we could go any time. The carer said she’d reassured Mum but a little while later, at half eleven, she rang me, in tears. She and her Mum were the original carers. The team has grown over the years but to start with, back in 2012? 2013? It was just the mother and then, shortly afterwards, the two of them. She loved Dad like he was her own father, people tended to do that when they were around him for long, and she explained that she felt as if she hadn’t said her goodbyes to Dad. I told her how the home had said we were welcome to go see Dad any time and said that if there was anything she needed to say to him, to go then. I told her I’d ring the home and let them know she was coming.

A few minutes later she pinged me a text to say she and her mum were going over.

I slept fitfully that night and the next morning, received a message on the carers’ WhatsApp group at about half six. The mother and daughter team who’d gone to visit Dad the night before had stayed with him, chatting and sleeping fitfully all night. They knew it was what Mum would have done if she’d had the strength and it was an act of such complete and utter love on their part which still humbles me.

They were texting to say they were leaving. They said he was able to do a half smile when they shared funny stories, so they knew he realised they were there. By half eight while McOther was out at the shops, I got another call from the home to say Dad only had a few hours left and that someone should come. I rang Mum and told her I’d put out a call on WhatsApp and it’d be the first person who answered.

The younger of the two ladies who’d been with him all night popped up and took her in.

My brother was on his way, I left as soon as McOther came home from the shops.

When Dad died I was on the four lane bit of the M25. No stopping and the traffic though slow, was moving. Thanks to our lovely carers, Mum was sitting next to him, holding his hand. The local vicar missed him, there was some huge Christian festival which blocked all the roads for miles around and she couldn’t get there in time but she said some prayers after he’d died.

Something happened, I’m not sure if it was just after or just before I got the call about him dying, I honestly don’t recall, but the feeling of connection, of love that I’d felt the at the last visit and the Wednesday before … that was still there and I was kind of praying to him I suppose. This is difficult to explain but basically I was thinking about him really hard in the hope that I could somehow send enough love out through the ether for it to reach him and for him to know where it came from.

As I thought about Dad, and tried to send him love from afar, I had this weird kind of out-of-body. I was looking at the roof of the home he was in, like the satellite picture only it was in much higher definition, receding fast, as if I was flying upwards at speed. There was a sense of freedom and unbelievable  joy. In no time, the viewpoint was high above the downs, flying along side of them towards Truleigh Hill. I could see the blue of the sky, the yellow and white of the flowers in the meadows below, I could hear the larks, drink in the sunlit green of the hills and blue of the sea. All the while, my heart was bursting with love and joy at the beauty and wonder of it all, at the sheer delight of existence, of a life well lived, of gratitude at the loveliness of the people surrounding me and the love and happiness I enjoyed, and I was filled with it, too. It was a bit like that feeling you get when you come off the best fairground ride ever and you’re thinking,

‘Blimey! That was a blast. I must do it again.’

Except it was a million times better. It was pretty fucking extraordinary. Because I was sort of feeling it as if it was me, but also feeling it with someone else; their feelings, being shown. And I may be nuts to say this, and I’m definitely laying myself open saying it in a public place but it felt as if, somehow, my efforts to connect to Dad had succeeded, as if those were his last conscious thoughts.

After it was gone, the traffic slowed more and I had to contend with the bell ends in the van behind me who were so close I couldn’t see their headlights. Clearly my decision to leave a 20 yard stopping distance, crying my eyes out as I was, my vision blurry with tears, offended them. But I was unable to stop and blurb properly because you can’t on that bit and I didn’t fancy sitting up the arse of the car in front while visually impaired! I gave them a brakes test and they backed off.

Back in Sussex, the people at the home washed and dressed my dad, and laid him out with a palm cross in his hands. Another act of humanity and love.

See you later Dad.

Back on the M25 I tried to reimagine the experience I’d just had, the connection, the joy, but I couldn’t make it feel the same. It wasn’t just because you can never quite recreate the impact of something like that a second time, but also because it didn’t feel as if it had come from me. It felt as if it had come into my mind from outside. Maybe those were my father’s last conscious thoughts.

Later, when I returned to register Dad’s death, I went to see his body. All I could think of was that bit in whichever gospel it is when the women go to look in the tomb to embalm Jesus and there’s some bloke is in there who basically says,

‘Why are you looking for him in here among the dead? Fuck off back to where he is; with the living.’

A good death then.

The connection? Still there. Quietly, in the background, giving me strength.

Death Is Nothing At All

By Henry Scott-Holland

Death is nothing at all.
It does not count.
I have only slipped away into the next room.
Nothing has happened.

Everything remains exactly as it was.
I am I, and you are you,
and the old life that we lived so fondly together is untouched, unchanged.
Whatever we were to each other, that we are still.

Call me by the old familiar name.
Speak of me in the easy way which you always used.
Put no difference into your tone.
Wear no forced air of solemnity or sorrow.

Laugh as we always laughed at the little jokes that we enjoyed together.
Play, smile, think of me, pray for me.
Let my name be ever the household word that it always was.
Let it be spoken without an effort, without the ghost of a shadow upon it.

Life means all that it ever meant.
It is the same as it ever was.
There is absolute and unbroken continuity.
What is this death but a negligible accident?

Why should I be out of mind because I am out of sight?
I am but waiting for you, for an interval,
somewhere very near,
just round the corner.

All is well.
Nothing is hurt; nothing is lost.
One brief moment and all will be as it was before.
How we shall laugh at the trouble of parting when we meet again

Source: https://www.familyfriendpoems.com/poem/death-is-nothing-at-all-by-henry-scott-holland

This poem was read at Dad’s funeral and shortly afterwards, one of the lovely people on my mailing list sent it to me, which rather heartened me as I must be collecting a group of the right kind of people!

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A bit of a sad one …

Last Friday night I got a Facebook message from one of my cousins, out of the blue, telling me one of my uncles was very ill, by Sunday morning he was dead. He was in his 80s and had lived a long and fruitful life. I believe he was refusing treatment and I think I was supposed to have received an email about it the week before but due to the joyous vaguaries of the internet it never arrived. Due to the joyous vaguaries of my mother’s memory loss, I never heard from her either – she would be the usual source. She thinks she wasn’t told but she has dementia too. I suspect she simply forgot.

My uncle was a lovely chap, the oldest on my Dad’s side, and a great character. He used to phone me up every couple of months for a little chat which would last exactly eight minutes. I was always touched by this, after all, he didn’t have to and as our most distant (geographically) uncle, we didn’t see him as much as our other uncles so I didn’t know him as well. He was also kind enough gave me a stunning print of Ely Cathedral – because we used to live in Ely – which now hangs, resplendent, in our hall.

He and my aunt and cousins lived near Colchester for 33 years. Ironically, just up the road from where I live now. He was vicar of a parish just outside Colchester. Needless to say, we lived in Sussex at that point. We used to go and spend a night in the Marks Tey Motel on our way to holiday on the North Norfolk coast and pop in to see him. We would spend a day running wild with our cousins and the dog, Seager, and then go on to holiday. Later, after my aunt died, he moved to near Glastonbury, eventually living with one of my cousins. A few years ago he moved again, to Guildford, which was great because it was much nearer to Mum and Dad so they were able to see him far more often. One of my other cousins, who lived near him, would bring him over for tea and a chat with Dad several times a year.

The highlight was always a trip over during Wimbledon. They would have lunch together smoked salmon sandwiches, salad, crisps and strawberries and cream which they would eat off their laps, while sitting in front of the telly while watching the tennis.

Usually, after lunch, Mum and my cousin would take a wander round the garden while Dad and his brother had a good old chat. Last year, I managed to get to the Wimbledon get together, too, so it was great to see him. The home had managed to put his hearing aids through the wash in his trouser pockets so the poor man was ‘without ears’ but we had a very pleasant lunch, nonetheless. I did what is known in my family as ‘Mum’s Joyce Voice’ after the way she used to speak to a deaf friend. It’s a bit embarrassing and you can feel a bit condescending doing it to start with because it’s basically loud and clear (but keeping the treble up).

However, it seemed to work and apart from the fact that my Dad behaved abominably, mainly because he is too far gone to understand that you need to speak a little louder and more clearly to deaf folks and then got annoyed with my uncle asking him to repeat himself. Even so, it all went off pretty well. Luckily this is Dad’s older brother, so maybe he had enough memories of little brothers behaving badly to remain unfazed and unperturbed by a modern day repeat! He was sweet with Dad, anyway.

Only a couple of weeks ago, Mum and I were discussing arranging another visit and talking about how much we were looking forward to it and also, naturally, our faint hopes that Dad would behave himself this time. Wimbledon will not be the same this year, indeed, I doubt there will ever be another Wimbledon without me thinking fondly of my uncle. I think his funeral is going to be sometime during the week after next so I will go to represent my parents. There’ll be no-one to look after McMini not enough notice for McOther who is too busy so I’ll have to take him out of school and bring him with me but it should be OK. If it looks like it’ll be a long service, we’ll bring Beanos.

I don’t normally post pictures of my family but here is one of my uncle – on the right of the picture in the smart light brown suit, having a laugh with Dad (bottom left) in better days and Mum (fuzzy head in the RH corner) at Mum and Dad’s sapphire? 40 anyway, wedding anniversary party. The one below that is my uncle on his 82nd birthday, I think, back in 2011 anyway. Lovely shot sent by my cousin Matthew just afterwards.

 

 

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