Well it’s that time of the week to write a blog and as I sit here, tapping at my keyboard, I see from my BBC Newsfeed that the Duke of Edinburgh has died. It kind of reflects my mood. I sat down, determined to share a couple of stories about him, which reflect a warm, kindly fellow with a sense of humour. Except really what I need to write about today is Mum. Since one of the stories about the Duke is an encounter with Mum I guess it kind of ties in then. This should probably come with a trigger warning. If you do not want to read me whinging about dementia cut this one and wait until next week.
Right, those of you who are left, on we go.
We’ve had a bit of a time of it with Mum yesterday. First one of the loos at her house has broken and needs fixed. It does need fixed too because it’s the one the guests and the carer’s use. Well, it was put in 48 years ago so it doesn’t owe us anything. It needs a new siphon but odds are, we are better off buying a new loo. As sis in-law said, ‘it’s a rubbish flusher’ and she’s spot on. We could have limped on with it, but now it’s actually bust, I think it has to go. That evening, the night carer turned up to discover Mum sitting downstairs in the kitchen having breakfast. She thought it was morning.
Pretty much anyone who has a relative with dementia will recognise this. I think most of us reach this point in the journey when there is absolutely unequivocal, incontrovertible proof that the person with dementia really has dementia and that it’s getting worse, a lot worse. Not better. That’s so hard.
The thing about dementia is there is no way back, no getting better, no relief, no recourse. Nothing but deterioration and death. I try really hard, but it’s difficult to see that any which way but grim. The only thing you can do for a person with dementia is try to ensure that their days are filled with kindness and sympathy, that the moments they live in are happy and that this will amount to a feeling of overall wellbeing, even if they don’t remember why or where it comes from. Oh and that they experience the least fear possible. There is nothing else to be done. There’s a honeymoon period from the first signs to this point, where you are all denying your arses off and telling each other that it’s just old age and that a gentle peaceful death will intervene way before madness does.
Thing is. It won’t.
And when you hit the point when you realise that, odds are, there’s going to be no mercy. That’s when it’s really, really hard to stay … well … chipper. Truth be told, I do far more snivelling at this point than later on.
But you have this horrible dichotomy when you want the person to carry on living, no matter how ill they are, because you love them and you don’t want them to go. But at the same time, you know they can’t and that if they do, the person with you won’t necessarily be the one with whom you are familiar. So far, Mum is still, mostly, Mum. We are lucky in that.
Mum goes to bed very early. This is partly because if someone helps her to bed at six and she sits and watches telly in bed all evening there is less risk of her falling. She is self aware enough, in her good moments, not only to have mentioned falls but explained that avoiding this risk is a big part of her original decision to get to bed earlier. Later she was always a bit more wobbly, especially if she’d had a sleep in the chair. Now, even more so, it’s a case of doing it while she has someone to help with the buttons and to remind her what she’s doing. It’s also partly because as she becomes less mobile, she is far more worried about lighting the fire in case a log falls out and she can’t get to it or isn’t strong enough to wield the fire tongs and put it back. It’s cold downstairs without the fire and a lot warmer upstairs. Another reason to get to bed early. She is also smart enough to know the extent of her disability and realises that if a log fell out and the hearth rug caught fire, she might not be able to remember how to use the phone if she became flustered or panicked. The third thing is that she often nods off in the afternoon and she didn’t like it if she nodded off and woke up, confused and disorientated, downstairs. She found it easier to combobulate, so to speak (or is that re-combobulate?) if she was already in bed. Hence she started going to bed earlier, straight after she’d eaten her tea at half five, sixish. That way if she did wake up she was already in bed, which reduced the WTF factor when she woke up.
A couple of months ago she rang me at about half past five in the evening asking for help. She’d got herself into a right old muddle, she told me, and she didn’t know what time it was or what she was supposed to be doing. It was easy to tell that she was afraid and it was horrible. I reassured her and explained that it was about time she got herself her supper – which the carers usually leave out for her.
‘What do I do after that?’ she asked me.
‘Ah well, then, usually, you draw the curtains and go upstairs to bed where it’s nice and warm and toasty. You sit in your bed, in your room and watch telly and doze for the evening.’
‘Oh, I see, I’ll do that then.’
‘Good plan. Do you want me to stay on the line and guide you through it all.’
‘No darling, I’ll be alright. Just remind me though, curtains first then supper and bed?’
‘Yes and don’t forget to put your eye drops in.’
After that one, we upped the care so the carers now pop in at half five or six-ish and give her supper, have a chat, help her get undressed and help her to bed.
We’ve had a couple of dodgy episodes since, usually when she knows she’s got something on and insists on getting up and getting dressed if she wakes up at four am to go to the loo, so she can be ready in time. Then there was the moving to higher ground because the news on the telly about Covid was bad and her worry that I’d been trying to persuade her she hadn’t been living in the house very long – that was the other way round. She was saying she moved there in 1986 and I was trying to explain she had lived there over the holidays from 1974.
This one though. Waking up and thinking it’s morning, I’d guess that nearly everyone looking after a dementia sufferer has experienced this. It’s an unmistakeable marker, if we didn’t know it already, that Mum is leaving us. It’s more than an imagined shape in the mist this time, it’s clearly delineated shadow.
We’ve done this with Dad and do you know, I thought it would be easier. Why on God’s green earth did I think that? It’s just as shit. Except that actually, it’s worse, because it makes me miss Dad. I miss Dad with all my heart because THERE’S NO SANE ONE. There’s nobody Bruv and I can talk to who can reassure us we are doing the right thing. It feels as if it’s all guesswork. But worse than that; the most horrible thing of all, is that even though she’s still here, I miss Mum. The time I spend with her is very precious because she’s still there when I’m with her and when we live in the moment. But just as Dad got to the point when he couldn’t really talk so well phone any more, so Mum is beginning to have days when, if I give her a call, I know we aren’t going to have much of a chat. Those are the days when I’ll ask how she is and have a few brief words and then sign off. Kind of a relief if I’m strapped for time, but sad in other ways. And hard now because it’s one of the few things I can do for her and it was something she really enjoyed. But I also miss being able to ask her for advice, because she could do advice and she liked being asked and being able to help. It made her feel useful. Incidentally, that’s a really, really good thing to do in the early stages. Ask them advice. Ask them lots of it. It helps them think as well, which is also good.
This is the hardest bit really. I’m not very good at it. I thought that if we got to this point with Mum I might cry less, but I don’t. I’m not hardened to it at all. It still hurts like a bastard and if I’m going to look after her properly I have to let it, which is a bit of a pisser. The thing is, it’s light and shade, the shadows are there and we can all see them clearly now. Hence the tears. But there is also light and I just have to concentrate on the good days. And possibly up the care a little or have the night ladies come a little earlier. And exorcise it … elsewhere. Doubtless I’m going to be giving The poor old Pan of Hamgee a completely shit time in the next Extra. Either that or the series about Ada, Gladys and Their Trev at the Parrot and Screwdriver is going to get very dark.
Never mind, I have a fun quiz for you to do in a minute and since I’m here I may as well share those stories about the Duke of Edinburgh as well.
Duke of Edinburgh Stories.
The Duke of Edinburgh is controversial in many respects, I know but as someone with an inate and similarly powerful ability to cause unwitting offence he was a man with whom I could empathise. There are folks saying they are glad the Duke has died. The way others see it, the Duke of Edinburgh was the product of a generation which had seen the world very differently and whose intentions were clearly good since, while he might have seemed old-fashioned and insensitive, he had done good things, like the Duke of Edinburgh’s Award Scheme. I remember Dad going to the Palace with one of the boys in the house who’d got a gold Duke of Edinburgh Award. I think the Duke presented the gold awards personally until very recently. He did good stuff and the Duke of Edinburgh Award is both class and colour blind, exactly the way it should be. There’s a good article about it here. So his legacy there is not the way some people, and here-say, paint him.
Already, I know of a couple of people who’ve had a spat over this. Person A believes HRH to be a racist and stated that if Person B didn’t believe the same thing then they were a racist too. Person B said they felt that was a rather black and white interpretation. Especially in light of the fact that all they were saying was that they felt it was not compassionate or humane behaviour to be glad at someone’s death. Person A told Person B that they needn’t bother staying in touch. Person B’s other friends are now taking the mickey out of them for being a racist. Apparently there’s an awful lot of quoting Father Ted.
‘So father, I hear you’re a racist now!’ (best delivered in the voice of Mrs Doyle).
It would be hard to find a more laid back, less judgemental person than Person B, who takes everyone as they come but it does herald the kinds of comments I’m going to get from those who are a little more intransigent about their views than I am for trying to be even-handed here.
Going back to the Duke of Edinburgh. Whatever his faults, he appeared to me, as an outsider, to be a reasonably intelligent man, with an enquiring mind who was interested in many things and, for the most part, wished to do good. He also had a sense of humour, which is a hugely underrated attribute. It’s surprising how many people, if you ask them, have a Duke of Edinburgh story. Well, it was a long old life he lived, and he did get around but that is the point. He tried to promote and help a lot of people and took an interest in many things. Hence I have a picture of Mr Potato, McMini’s godfather, seen here waxing lyrical to HRH at some agronomy do about … well, yes, potatoes. And believe me, this is a man who can wax extremely lyrical about potatoes to the point where HRH may well have been late for his next appointment.
I also look at the Duke through the lens of someone who knows that, as people age, they lose a lot of filters, or unthinkingly say things that would not have turned a hair when they were younger but now do, especially when those things are taken out of context. But I also notice that we, as people, are becoming more literal. I suppose it’s because everything is written down on the internet these days so there is no non-verbal aspect to so much of our communication. But I remember people taking the piss out of me about my looks and not being bothered at all because I understood the spirit in which the remarks were made, while other folks could say the same things in a slightly different way and I’d be extremely angry. I do understand that you can’t say a lot of stuff because even benignly meant, it could be taken out of context and will always be read as nasty rather than cheeky should that happen. But in many ways this loss of judgement and appreciation that there is a middle ground between the black and the white is unlikely to better things or make us happy. Anyway, here are the stories.
Story number one. Back in medieval times, when I was at school, a friend’s mum was big in to scurry racing. This is micro ponies with equally micro light weight traps raced round a course of twists and turns, hills, slaloms etc. Her mum was at some big event, probably the Surrey county show or the like and doing rather well, except there was one point on the course where she kept muddling her left from her right and almost going the wrong way. Friend’s dad was trying to think of ways that Friend’s Mum could remember which her left and right hand were – I so identify with this because I’m absolutely clueless at telling my left from my right. Anyway they were waiting to do their run and still talking about this with the ‘solutions’ suggested by Friend’s dad getting sillier and sillier as he tried to calm her nerves. While they were talking a Random Fellow nearby, overheard them and chuckling, he said.
‘Maybe you should try tying a red ribbon round your right wrist.’
Quick as a flash friend’s dad retorted wryly, ‘Why? Do you do that to your wife?’
There was an almighty guffaw and that’s when friend’s mum and dad clocked that Random Fellow was the Duke of Edinburgh.
Other quick one. Mum was a debutant and as such you get presented at court. I asked her what the hell happened and I wrote it down somewhere but needless to say, I can’t remember where. Basically there’d be a few days of it when hundreds of young ladies gathered in groups in the White Drawing Room, I think it was, at Buckingham Palace, to be herded through into an adjoining state room and PRESENTED AT COURT. No judges or juries involved. You were put into groups and then you were called forward, one-by-one and introduced to the Queen and the Duke of Edinburgh who were seated at one end. Your name was announced and you walked up to them, your name was given, you curtseyed and I think the occasional pleasantry was exchanged after which you went off and the next person came in. Mum had the same knee disease as I did and had surgery aged seventeen. I think she walked with a stick until she was about twenty five although, I suspect, not for this. I remember, as a wee nipper, that every time we knelt down at the altar in church, at communion, Mum’s knees would crack. It was always the same noise, and always quite loud. I could hear my mother kneeling down in another room and know who it was from that crack. Hmm, thinking about it, that probably is quite loud. Indeed every time she bends the dodgy knee, said crack still rings out like a gunshot – only marginally less noisily than it used to.
So there was Mum in her best bib and tucker, walking the length, breadth, diagonal or whatever it was of either the White Drawing Room or a state room into which it led. There was H M The Queen and the Duke at the other end. Mum walked over to them in stately, demure fashion in her smashing debutant’s dress, curtseyed and of course, off went her knee. Crack! She was very embarrassed and as she turned a gentle shade of puce and tried to maintain her shredded dignity the Duke gave her a massive smile and winked at her. It doesn’t sound much, but remember this was the late 1950s so things were very much more austere and proper in those days. Mum assured me that wink was like a giant get-out-of-gaol free card. It was just enough to let her know it didn’t matter, and put her at her ease, without drawing attention to it and embarrassing her even more. I’d have liked to have met the Duke, if only to thank him for being kind enough to put my mum at ease, but I wouldn’t have wanted to meet them like that. Luckily all that malarkey had been done away with by the time I hit eighteen so I didn’t have to do it.
I always felt that The Duke was a man with a sense of humour – and as far as I could tell, from the anecdotes I heard, which are mostly stories like these, he clearly had a somewhat acerbic wit on occasion, and I suspect he may not have suffered fools gladly, but I can also imagine that he was a very much more well-meaning and dignified person than is made out.
And now for something completely different …
Yes, it’s quiz time … again.
OK, so I had an idea that it would be fun to use the black on white and white on black versions of the spiffy new HUP logo to make some print on demand stuff on Zazzle, Society 6 or somewhere similar that will feature favourite K’Barthan centric quotes.
In particular I like the idea of a set of mugs with the things that Humbert shouts. What could be more fun then wowing your work colleagues with a mug that says, ‘Bite my winkeyi!’ Yeh. OK, possibly quite a few things but … you get the picture.
Alternatively, some mugs or possibly even t-shirts and badges/pins featuring K’Barthan swearing would be fun and a Great Snurd (of K’Barth) Company Limited baseball cap.
That said, I think a first wave of Humbertisms, to test the water, would be best to start. To answer the question click the button or click here.