Tag Archives: early dementia

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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