Tag Archives: early dementia

There is no end to my unending twattery.

Christmas has come and gone. Christmas is usually about other people but this year, thanks to COVID, we got one for us. Not that we had a choice but it was wonderful, just this one time, to ditch the travel. Our lovely rellies will all be there next year and we’ll be into the car again and creeping through the packed motorways to their various houses and I’ll be whinging about the travel even though I love them and wouldn’t do anything else. Mum’s turn next year.

Meanwhile, COVID aside, I was kind of congratulating myself for managing to limp through this year without making an absolutely monumental fuck up of anything. Or at least, nothing stupendously moronic enough that others could specifically point to, while going, ‘bloody hell! Look at that!’

However, it turns out that is not what I have done. Indeed, quite the opposite. After managing to avoid overt wankerdom for quite a lot of this year, I pulled some absolute blinders out of the bag at the end to ensure that my reputation as a vacuous airhead remains untarnished. Yep, I may be dim but my reputation for knobbery is shining as brightly as ever. Since I can’t so anything to ameliorate my twattery, I feel we may as well have a chuckle about it here. It’s good for naught else after all! Off we go then …

First, I managed to arrange an extra special shit show for myself over a couple of hours on Christmas Eve …

Six o’clock; it was dark and everything was closed. Time for shower and pjs. Got undressed, replied to a couple of texts and dumped my phone on a chair in the bathroom next to the shower. As I put it down a solitary card fell out of the case. An M&S card. I picked it up and checked the floor around, nothing else had fallen out.

Good.

Putting the card back in the wallet bit of the phone case, I discovered the reason nothing else had fallen out. It wasn’t there.

Not so good.

Indeed, more like aaaargh! Yes, a handful of business cards were gone and I was happy to lose those but I was less happy about the absence of my debit card and my driving license, which was only in there temporarily anyway because I keep having to do things that require ID and it was pissing me off having to go and find it.

Shit.

I scrabbled round under the chair but there was no sign of the cards.

Double shit. Now what.

Well, I decided, since I was already in the buff and the water was running nice and hot it was a pity to waste it. Yep. I may as well have a shower. Then I could put joggers over my pj bottoms, an anorak over the top and trace my steps round the town to see if I’d dropped the cards during the walk I’d taken earlier to deliver Christmas cards. I sent about three, the ones I could deliver on foot, and that was it.

Why did this stuff always happen after I’d run out of time to fix it? I asked myself. Why indeed. Thank you 2020 for a final fuckery fuck. I hate you. Except I sort of don’t because lockdown has been very, very kind to my stress levels.

Showered and changed I went downstairs to the McOthers, grumpy to a point where I might just possibly have been the grumpiest bastard on earth at that moment, and explained what had happened.

‘When did you last use the card?’ asked McOther.

‘Pffft! Yesterday, the day before, last week? How should I know?’

I could see the enormous concentration it took for McOther to stop his eyes rolling. Obviously I’d not the blindest, chuffing clue when I’d last seen the cards, natch. We decided that I’d search my office, and look down every sofa and chair I’d sat in since June. No wait, no need. McMini remembered that they all fell out the previous evening and he climbed over the back of the sofa to retrieve them for me as I lay on the cushions like a giant fat baby bird making pathetic noises, arms, legs and crutches akimbo and ice pack applied to my knee. Thank you McMini.

We started the search and McOther, god love him, donned his coat and retraced my route round the neighbourhood to see if he could find the errant cards on the pavement. Why to god do I not keep these in my wallet? He asked me before he left. I explained that I have a wallet but there are slots for cards on my phone case and so I split my cards between the two. Bag snatched? Never mind you still have money. Phone lost, never mind, you still have a credit card in your wallet in your bag. Left one or the other at home? Never mind, you are still financially functional.

McOther returned from his search of the streets empty-handed. Having searched everywhere while he was gone and also found nothing, I resigned myself to the horrors that had overtaken me. I was going to have to pay twenty quid, or whatever it is, for the pleasure of losing my driving license and I’d have to stop my debit card.

Ugh.

Maybe I should take one last look in the bathroom, I thought, even though McOther and McMini had both looked there and found nothing. I went up, and looked at the chair. Underneath it, standing neatly against the side of the shower cubicle are a couple of bottles of spray cleaner. One was slightly skew whiff. Could that be? Maybe … yes! There were the offending cards! Still bunched together in a fat oblong, jammed in between a bottle of Cillet Bang glass cleaner and the side of the shower cubicle. I put them in a different part of the phone wallet, where they cannot fall out.

To begin with, having been forced to make some unscheduled after-dark perambulations, McOther was unamused. However, he did eventually see the funny side.

Christmas almost ruined but thankfully, not, after all.

Further news, I decided to buy myself a pair of spiffy new boots this week. I duly searched for them on line and, finally, discovered a pair in a colour I like and a size that would fit. Joy. As usual when I came to buy them the ruddy site wanted me to join. I get so fed up with this having to join up to everything. Yet more emails I don’t want and another password for an ‘account’ I’m unlikely to use ever again; a password I am even less likely to remember. The worm turned and I gave my address but wrote my feelings in the name box. I paid by paypal so they’d be using those details anyway. Right?

Hmm. Apparently not. Now they keep sending me emails addressed to, ‘Dear I don’t want to join anything I just want to buy some shoes’.

All I can say is, I’m glad I didn’t swear. This made me unaccountably giggly, which just goes to show how much of an idiot I am, because it’s not funny, except that I find it chuffing hilarious. Presumably because I’m a twat. As well as arsey. An arsey twat, then. But we all knew that anyway.

Well … Tis the season to be merry, after all …

Originally, I thought I’d have a new release to share with you. Yep. I was hoping I’d have managed to get a story in this year’s Christmas Lites. However, after a horrific two months for the producer, which included her getting COVID,  it will, most likely, be postponed until next year. I will keep you posted on that one. In the meantime, there is always last year’s which you can find here. It’s great as always; beautifully presented and full of cracking stories although not one of mine that time.

There were also glitches in the admin. There are times when I think it would be really great to actually be able to remember something occasionally. The kind of shite normal people don’t even think about having to remember. Stuff they remember as easily as they remember to breathe. Clearly it is not to be. Lorks though! Imagine if you did have to remember to breathe … every … fucking … breath. How much mental time and energy would that take up. You’d get fuck all done right? Yeh, right. Well, that’s where I am with admin. And there is a LOT of admin in my life. I need to speed up my mental cogs, I need to think faster so I can write faster and be, if not on top of then, at least, a few inches off the bottom of my admin.

On the upside, after about 21 months, West Sussex Social Services has finally got round to invoicing me for Dad’s care home fees. Luckily, I had the money ring-fenced and I have paid so that’s the last of the Dad stuff … er hem … except interring his ashes but we’re going to batch him with Mum so at the moment his mortal remains are still with the undertaker.

Further strange adventures on Tuesday. I received a mysterious email from DPD warning me that they were going to make a delivery today. I was surprised to discover they were delivering to Mum. I have a lot of stuff on order so I pinged a message to the lovely folks on the care group warning them that I may have sent my bras to Mum’s in error. This was particularly annoying as I am not now going to Sussex for the foreseeable so I was wondering about the logistics of getting whatever it was, but I was pretty sure it was bras, back to me. I spent some time going through all the ‘your order is dispatched’ emails and discovered to my horror that yes, there was one. Mum sends gifts out to all her nephews and nieces. There are a fair few of us and so depending on the status; vegetarian or not vegetarian, they get smoked salmon or cheese. At the moment, although there are two vegetarians, one eats fish but the other doesn’t so I send her cheeses from a fabulous company which used to come to the Ely Farmer’s Market. I order them with Mum’s card but I always put my number and email address because Mum doesn’t look at her emails anymore. I used to do it for her but now that everyone who matters knows she doesn’t read them there isn’t really much point.

Bollocks. It was obvious what had happened. I’d somehow managed to stuff it up and have the cheese sent to Mum instead of my cousin. Arse-ity arse, arse, arse! Yet, when I looked I had got the delivery address right. Bum. Now I’d have to complain. Except that, hang on, hadn’t my cousin had her cheese? I was sure she’d mentioned it. What was going on then?

Before I could investigate further the phone rang. It was Mum.

‘Darling, something’s arrived. I don’t know what it is.’

‘It’s OK Mum, I think it’s cheese,’ she starts slowly and deliberately reading the label.

‘Do not leave, deliver or return to depot, open at once …’

‘Mum,’ I feel guilty about interrupting her but we’ll be there all day. ‘Are you able to bring it inside and open it?’

‘Of course, good idea.’ We chat about this and that as she makes her way into the house and takes the parcel into the kitchen. I hear her put it on the table. ‘I’m going to put you down now while I open it,’ she says.

Clonk. Scrabbling sounds.

I wait.

‘Are you doing OK?’ I shout after a minute or two.

‘Yes he’s coming this afternoon,’ she bellows back cheerfully.

Riiiiight. OK so she can’t hear me. I wait, and wait, and wait … Then after a little while, I wait some more. Hmm, has she forgotten I’m there, I wonder. A couple of days before, while we were chatting on the phone, she fell asleep. Luckily I made the call so I was able to hang up and redial, the ringing phone woke her up. No, wait. She isn’t asleep there are still scrabbling noises. It’s just the sound of someone with arthritic fingers trying to cut through sellotape with a kitchen knife. Please God don’t let her cut herself.

Clunk. Ah she’s picked up the handset again. ‘It’s jolly difficult to open!’ she says. Clunk, I hear as she puts the phone back on the table and starts sawing, afresh, at the sellotape before I can reply.

I wait … and wait … and wait a little bit more.

‘Oh …’ I hear her say.

‘Yes?’

Clunk scrape click, ‘Darling, it’s definitely cheese. One with red writing on, one with green and two blue.’

‘No, Mum, I think the two blue ones are the biscuits.’

‘Oh so they are. And there’s a jar of something.’

‘Onion marmalade?’

‘I haven’t got my glasses but yes … I think so.’

Arsocks! Now I know it’s my cousin’s cheese.

At this point the carer arrives, and she does have her glasses with her so she’s able to read what’s written on the packets. Then we discover a note in there.

‘Many thanks for your support at this difficult time. We hope you enjoy your cheese. Stay safe. Tim Jones.’

Well … that’s not my cousin’s cheese. But they’ve sent Mum the same cheese selection she sent my cousin. Bless. Part of me is delighted for Mum, another part of me is green with cheese envy and wishing it was sent to my house. But the biggest part of me is extremely concerned. I know that these guys do a number of farmers markets in their area, Stamford, Oakham and similar. Ely must be about as far east as they come on a regular basis. They also come to the Bury Christmas Fayre, they must sell a tonne of cheese there, and doubtless they do Norwich Cathedral Fayre and many others round about – they come from Rutland so I’m guessing they do everything within a 100 mile radius. Those events were all cancelled this year and just talking to the chap on the huntin’/shootin’/fishin’ stall at the market who makes 12 bore cartridge Christmas Lights, it’s a lot of revenue to lose.

So now I’m rather worried about Mr Jones and his holstein cheesemaking helpers. I hope they are OK because their cheeses are absolutely fabulous. I’m going to go and buy a big hamper of cheese from them right now. Because they are awesome and I want to keep them going. And if you want to try some of the best cheddar cheese in the world – I kid you not, this stuff is gorgeous – just visit www.lincolnshirepoachercheese.com It’s expensive, but it’s worth it for that sort of quality. I also notice they won a gold medal at the 2019 Artisan Cheese Awards in the Hard Cheese category. I find that unaccountably amusing, although I suspect nobody says ‘hard cheese’ anymore. I’ll have to put the phrase in a book so it’s preserved for posterity. But an award would be anything but hard cheese I’d have thought.

There we are, it’s all go here at locked down towers. I have to go to emergency code red London on Monday for an appointment with the knee consultant at London Bridge Hospital. I’ve decided that public transport probably is a bit dicey so I’m going to drive. They do let you park there in situations like the current one. Woot for the vaccination when it comes. In the meantime. Wish me luck.

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On a different note …

I’m giving away one of my books until 31st January – because I feel like it. Obviously, the book in question is the Christmas one, Nothing To See Here. If you haven’t got it, now’s your chance. Here are the details.

Nothing to see here

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 is going to ignore Arnold, The Prophet’s birthday, especially not Big Merv, who orders The Pan of Hamgee to deliver the traditional Prophet’s Birthday 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 Parrot and Screwdriver pub in time for an unofficial Prophet’s Birthday celebration with his friends?

Just in case you’re havering, it got this review, which is about the best review any of my stuff has received, ever:

‘It is a gem of a story, polished and with every facet cut to just the right angle.
A real joy.
This is the wardrobe entrance to a whole new world
Thanks Jim Webster. 🙂

I’ve decided to give this book away from my online store for the whole of January. Here’s how to get hold of a copy.

Go to my shop and download it – this may sound daunting but it’s OK, bookfunnel will also send you the book by email so if you have any problems loading it you can get it from them AND they will help you. To grab your book, just go to my payhip shop, here: https://payhip.com/b/nYoz click to buy and enter this code at checkout, exactly as I’ve typed it exclamation mark and all.

WipeMyConkers!

Happy New Year, and Happy (belated) Prophet’s Birthday. Here’s hoping you and yours stay safe and well and warm, or cool if you’re mid summer right now. For the rest of us, here’s to spring! Let’s hope it hurries the fuck up!

Here are the details for the free book again:

Download page: https://payhip.com/b/nYoz
Code: WipeMyConkers!

Blurry Pyramid Orchids at Mum’s

 

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Ouch. Post surgery blues … they come to us all

Today, I’m going to talk about pain management. Because pain management is quite a big part of my life right now. It does feel as if my full-time job is doing physio, three times a day. Having pathetic walks – three twenty-minute walks a day. Little and often works, but one big walk just makes it stiff. It’s particularly irritating when you have to get the anorak on and wrap up warm for a pathetic amount of time. Then there’s icing my knee. This has to be done five times a day for twenty minutes with the swollen limb higher than my heart. So that’s lying like a beached whale on the sofa with one leg in the air.

The hardest thing about the five 20 minute icing sessions is that you have to keep the swollen thing higher than your heart. That means lying with your leg above your head icing your knee and I always bloody go to sleep. Which is not really helpful because I need to be dog tired to sleep at night … and there’s only time for four. I’m probably supposed to do one when I wake up.

Then there’s three – or ideally four but I can’t squeeze the fourth one in – physio sessions every day. And of course, if you go for the third walk after three thirty, you’re going in the bastard dark. And it’s damp and the crutches slip on the sweaty pavements – or the ice (insert as appropriate) – so you have to be careful. Note to self, if I ever have to put myself through this purgatory again, I must do it in summer.

That’s the first golden rule then. If you’re looking down the barrel of major surgery with a long recuperation period, and you have a choice, do it in summer. Especially do not do it when you are looking down the barrel of a five hour car journey way before you are well enough. It’s got to be done but it’s going to hurt. Thanks for that Boris you honey monster-shaped git. And for keeping the window nice and small so the entire chuffing nation has to go at the same time thus clogging the roads. Never mind it hurts awyway so that probably won’t make much difference.

Seriously though, how do people do this? I mean, if I add in the odd household chore here and there, which, because I’m on crutches, I achieve at a pace slightly slower than that at which continental drift moves. Doing the washing up in the morning, and putting a wash on, hanging it out and folding it up is pretty much all there is time for over and above the stupid recovery routine. Then I have to ring my Mum, every day, and it takes an hour, and I wouldn’t begrudge Mum the time or the call, it’s just that it’s another thing to remember when my brain is addled, first with pain meds, and now that I’ve kicked those into touch, with … well … pain.

That’s been interesting this last couple of weeks.

The day before lock down a friend of Mum’s popped round for a visit. They had a lovely time except the following weekend, friend in question discovered she had covid. So as she came out with it less than five days after seeing Mum, Mum had to go into isolation for two weeks. Except that then someone looking after her on the Thursday also got Covid within five days, so the isolation period became even longer, moving from the Tuesday to the Thursday.

It’s been coming, in fact it’s miraculous it hasn’t happened but obviously it had to happen now. Three of Mum’s care team got Covid. Two testing positive and one with exactly the same symptoms but testing negative. I still can’t drive and so we decided it probably wouldn’t work if it was limpy looking after dotty. Instead my lovely sister in-law went down there, along with the one remaining carer still standing. During this time, Mum had an eye appointment on the Sunday which none of us clocked was actually a five hour laser surgery session. Meanwhile I was getting regular calls from Track and Trace asking how Mum was getting on with her isolation. Did she need help?

No, I expained, she was fine and sis in law was there. Finally one Sunday, after trying a longer walk, I’d dropped off, as usual, during the post perambual knee icing session. I was rudely awakened by the phone. Someone wanting to talk to Mum. I explained I didn’t live with her, but I could give them her number, except she would be off out to the hospital for an eye appointment soon. To my horror the voice on the phone told me she hoped not because Mum was supposed to still be in isolation. There would be a fine and legal action if she had.

Fucking fuck. Why does this stuff happen when I’m so ridiculously under par.

Ah, I said. I explained that I was addled and recovering from knee surgery but thought the folks down there would be sensible to put two and two together and not go. Did I want to ring and check? She asked me. Yes, I said, I probably did. She was actually lovely about it and said she or one of the others would call back later.

I rang Mum. No answer. Sod it, they’d already left. Rang Sis in law, brother and everyone else I could think of. Finally sis in law answered. Hopefully we didn’t break the rules but she had to go in to explain what had happened, at which point she discovered that what we all thought was a routine eye check for Mum was a 5 hour laser surgery. Oh shit. Hopital team were very understanding and Sis in law returned to Mum, who, thankfully, hadn’t got out of the car, and took her home. It was like a French farce!

Mum was very cross and wanted to make a complaint but I guessed that since the carer who would have originally taken her was one of the ones off with covid, she probably was waiting to tell Mum nearer the time so she didn’t get all of a dither. Over the course of this week the plague carers – and the non-plague plague carer – have gradually returned and everything has gone back to normal.

Meanwhile Mum is in a dither about plenty of other things, getting the right prayers for this week’s church so she can look at the right readings on the right day, and increasingly phoning me to explain that she can’t get the phone to work. She has started to muddle it up with the TV remote. Yesterday she hung up on me twice while she was trying to turn the telly off, eventually, I managed to talk her through using the right one. Then there’s trying to do proper admin on the group of authors campaigning for fair treatment from Audible, I’m not pulling my weight there at all.

I’m just a bit burned out because Mum … and I didn’t see the Mum stuff coming. I should have known, Dad would always take nose dive every November, but because Mum hadn’t reached that stage until now … and because we think she has vascular dementia … I had kind of hoped it would be different. Maybe she hasn’t. Maybe hers is Alzheimer’s. On the up side, I have now convinced her to have it investigated. The Doctor wanted to start the investigation into Mum’s mental health with some blood tests and offered these about a year ago but she decided against it. However, now she is finding her lack of memory a right pain in the arse and decided she’d like to know. I’m guessing if he’s starting with blood tests he might be wondering about kidney efficiency. She has told me she needs to go to the loo rather suddenly and can’t always get there. How brilliant it would be if the lion’s part of this turned out to be a UTI.

‘I really don’t expect to have to go changing my nappy in the middle of the night! It’s very irritating!’ she said yesterday.

Bless her. I also understand why she refused to have this knee op in 2012 when I was urging her to do so. I can’t imagine what it would be like looking after someone with dementia in this state. Well no … I can … that’s why my sister in-law did it! Thanks Emily! 🙂

It hasn’t been a huge help that all this has co-incided with the bit, five or six weeks after any big injury/surgery etc when I get weepy. This is like when I tore my ACL. It was so painful and it went on and on, grinding, awful, spirit-sapping pain. It was six months before I could walk without a stick. There would be points where I’d get really blue and just want to cry at how mind numbingly slow recovery was. This … this is very like that. And there were a couple of days this week where I just wanted to cry. It is a bit disheartening waking up every morning with your leg set in position like a brick and having to gradually work on it. Over the day, I get to the point where I can straighten it and bend it just over ninety degrees. Then it’s back to bed and the same shit the next day. I wouldn’t mind if straightening it all out wasn’t so effing painful. But it is. And of course that means the pain now is slightly worse than it was two weeks ago, which feels particularly bloody if I’m honest.

Having a of sense of humour failure with the speed of recovery is perfectly natural. I know what’s happening, I know what it is. I just wish I could shut my eyes and fast forward through this bit, or crawl into a hole somewhere on my own, away from other people until I was done so I didn’t have to be a pain in the arse to anybody.

For anyone doing major surgery, it is important, going in, to realise that you will feel less disheartened sometimes, and that you’ll get to a soul-crushing bit where you are just dragging yourself through each day and feeling as if you aren’t getting better (you ARE getting better but because it’s so slow you aren’t noticing).  It’s a pain in the arse but … yeh … I know. I’ll be 8 weeks out by Christmas. If I can just work hard enough now, I should get the ambient pain levels far enough down to cope with the Christmas uplift. Because they will rise over Christmas, they can’t not, because you can’t spend five hours each way in a car – on the two single days when Boris has doomed the entire long-distance-Christmas nation to have to travel at once so it may be more –  go to someone else’s house and spend the entire day putting ice packs on your knee, going for pathetic walks and doing physio … and if the loo is at the bottom of the sweeping, majestic stately-home-sized staircase, and your bedroom is at the top, you’ve got to suck it up. But that’s probably part of my frustration now. Because if I can get it right enough before I go, it should be fine. If. And if it isn’t it’s no bother. I just take a sleeping bag and an airbed and I can always kip downstairs in the dining room if it starts playing up and getting really stiff at night or something. It will be OK, it just adds to the frustration.

________________________________________

Want something to take your mind off the nightmare that is 2020?

The lovely people at Kobo have a Black Friday/Cyber Monda Extravaganza Audiobook sale this weekend. If you’re in Canada and the US, many audiobooks are reduced to $4.99 or less, including mine. Likewise, you can pick up Small Beginnings there for the princely sum of 99p. Woot. Find out more here: https://www.kobo.com/ca/en/audiobooks

Or if you really want to push the boat out, there’s something else. There is the Bury St Edmunds virtual Christmas Fayre.

🎄The Bury St Edmunds Christmas Fayre is one of the largest in the UK, and this year it’s online! Head to https://exploreburystedmunds.com/the-virtual-bury-st…/ to browse for fantastic Christmas gifts – including books! Yes, the Suffolk authors are back, with a virtual stall and signed books for all the bookworms on your list, delivered to your door*.

Choose from a series of crime adventures set in Suffolk, a tale of dark magic in a mysterious English village, a life-affirming journey on the Greater Anglia rail network, a near-future UK-based dystopia, and a comedic sci-fi fantasy series. Or buy them all, and treat yourself! 😁

Tell your friends, tell your family, tell the person two metres away from you in the queue at Sainsburys. Christmas, sorted! 🎄👍

* Please note delivery for some of the books is UK only.

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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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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.

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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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