Tag Archives: dementia

Accepting the way dementia transforms someone you love.

It’s been a rough two weeks on the old dears front and now things have settled again, I feel I can talk about it. There is a maze of guilt and awfulness to experience when someone you love gets dementia. It is really hard to watch the pieces of their personality gradually disappearing. I know that Sir Terry saw it as little pieces of himself disappearing forever every day. The trouble is, if you are close to a dementia sufferer then for the sake of the sanity of both of you, you cannot allow yourself to see it like that.

Mum and Dad’s wedding photo. Check out the hands. Hanging onto one another like they never want to let go.

There was a time when I felt that Dad was dead to me. That the person I knew had gone. That made me feel like shit on oh so many levels. Actually, it isn’t true. The person I knew is still there, but parts of his brain have gone. I reasoned it out like this:

If he’d had an accident and become paralysed from the waist down, I wouldn’t write him off because his legs didn’t work. So his brain is stuffed, it’s just a different part of the body, so what was the problem?

Even so, there was a period when I felt that I could never learn to cope with this new stranger in a familiar guise. My dad who wasn’t my dad. There were times when I almost wished he would die, not because I wanted him to but to end his suffering, and ours. I still envy people whose parents die suddenly or after a short illness, but that’s because treating Dad with the dignity and humanity I should takes an exhausting amount of moral fibre, mental stamina and strength of character not to mention time, a commodity of which I have absolutely fuck all! And emotional energy, another commodity of which I have jack shit. I guess there is always going to be the odd day when I wonder what it would be like if I could stop being quite so badly needed and get my life back.

Then I remember what my Dad’s friend Ken said. Ken looked after his wife, Biddie, when she had dementia. He was just lovely with her and she’d wander off, get confused, be unable to work out where she was. Ask where the children were and he’d say, ‘They’re at home, now come along Biddie, it’s quite alright.’ I once told him I thought he was doing a wonderful job and that I thought he was amazing, the way he looked after her, the way he coped with it and that I was in awe of how he did it because I didn’t think I could.

‘It’s an honour. An honour and a privilege,’ he said.

He got emphysema and his son and daughter came to live in, turn and turn about. At one point, before his wife died, he was very sick and was given the last rites. The next morning he felt better and rang the priest to say thank you! Like Mum is doing for Dad, he held on. He survived Biddie, but not for long.

So that’s my motto for when things get difficult. Be like Ken. And it was Ken’s attitude to Biddie that I aim for, that ability to see her as she had always been when, to the rest of us, she seemed have become someone else.

Mental disabilities are hard. People who have cognitive problems, or who say and do inappropriate things can be hard to love. The parameters in which they operate are not the same as ours, so it’s awkward. Connecting is hard. Sometimes, it’s even dangerous. I confess, it’s not great when you consider it a success if you get away with hugging your father without him groping your arse. But the important thing with dementia is not to give up on the person. They’re still in there, they’ve just lost their ability to process the world through memory and all that is left is emotion, so the trick is to keep them feeling emotionally comfortable – yeh, I know, easier said than done.

Dad is not always very nice to people anymore (understatement of the century) when he panics he gets defensive and sweary. He’s particularly bad in the mornings. He’s never been a morning person and actually, I thoroughly sympathise there, because neither have I. When I wake up in the morning, the first thing I do is get up, wash my face and clean my teeth because, even with an electric toothbrush, cleaning my teeth is one of the most boring things in the world and I like to get it over and done with. And this is the thing with Dad. To look after him, we all have to make the links between the extremes in his behaviour to the norms in our own; to understand, to give it a lot of thought.

Despite being a very social animal, Dad also struggles with a busy house first thing, so he’s not great at having visitors to stay. Indeed, the vilest and most horrible I’ve ever seen him was last Chirstmas, when McOther, McMini and I went to stay with Mum and Dad. There’s a hotel just up the road and I think staying in that might be worth a try in future. But at Christmas most hotels have been booked years in advance, or are closed. At Christmas, it will always have to be round theirs.

Some days, Dad is completely switched on. He knows who I am, he remembers how to have a conversation, more to the point, he can follow one. He pauses and listens when others are speaking and chips in with his own comments. Other days, he shouts that no-one’s paying him any attention. That just means that, today, he can’t follow the thread and is feeling a bit frightened and disorientated, or just a bit left out. His reactions are more childlike as new parts of his brain succumb. It can be hard to find Dad in there, beyond all that effing and blinding, throwing things around. Strangely, while in some respects, there is an element of a two year old throwing a tantrum, with much of it, the main gist is seeking reassurance or trying to hurry things up. So he empties out his cup or clears his plate, but he doesn’t realise that scraping the leavings off it onto the drawing room floor is the wrong way to do that. It gets a reaction and gets everyone’s plates cleared so that’s fine by him, he fails to grasp the gap in his logic.

When Dad is like this, it’s really hard to engage. You don’t want to. You withdraw. You cut off contact. You don’t talk to him because it hurts you. Except that makes it worse. I guess the biggest trick is to remember that while he’s behaving badly to get attention, the reason he is vying for that attention is because he needs reassurance. You have to constantly remind yourself of the dementia sufferer’s humanity, even when they seem to be inhuman. If I chat to Dad and give him lots of attention when I arrive, he is happier and I also end up having far more time to talk to Mum.

A couple of years ago, Mum finally got too exhausted to look after Dad and her health broke down. Waking up and talking him to the loo whenever he needed a wee in the night, every night, for fifteen years had finally taken it’s toll. Lack of sleep and the rigours of living with someone who, essentially, needed the kind of vigilance required to look after a two year old is hard enough when you’re young. When you’re 82 it’s a pretty tall order. I remember talking to my brother, and we felt that Dad was dead and all that was left was this weird shouty stranger who was dragging Mum down, sucking out her life, her energy, the joy in her life. My brother wanted to put Dad in a home but Mum said she’d promised she’d never do that and refused. I stood by her because I wanted her to be OK with herself.

Luckily, I don’t feel that way about Dad anymore, but I’d lay bets that feeling is a natural stage in coming to terms with any brain-damaged loved one. So to anyone reading this who feels that way, chill. It’s normal. Likewise, feeling shit about yourself for feeling that way is, undoubtedly, normal as well. And if you work at the way you are thinking about this, analyse why you feel that way and do your best to work out ways to engage with dementia sufferer on their own terms, it will pass.

Dad can’t understand why Mum no longer looks like this.

While putting Dad in a home would, undeniably, be better for Mum’s physical health, it would be disastrous for her mental health and, at the moment, it would be terrible for Dad, too. Maybe further on, when he doesn’t really realise it’s a home he’s in but not now when he is very aware and wants to stay where he is, with Mum. For all that he is ‘engaged’ to one of the carers and two of the young women who work in the pub, there is still a weird habit of love for Mum. He doesn’t realise he’s old, so he can’t quite understand how they are married, but he does understand that he loves her, even if he has difficulty placing how or why. My brother is probably right. Looking after Dad may well be killing Mum, but it’s what she wants to do and it’s her choice. If she stops living life on her terms, or doing whatever she needs to do to be able to look herself in eye in front of the mirror in the morning, that really will kill her.

However, recently, Dad has been doing some very silly things, like throwing himself on the floor and refusing to get up. I worry that he may hurt himself and then Mum’s whole argument – My friend X put her husband in a home and he didn’t last three weeks – goes by the board. Because if he ends up in hospital and then has to just go somewhere where they have a bed, it would be disastrous. So we need to establish a relationship with a home. One where I think he would be happy if he lobbed himself onto the floor and broke his hip, or if something happened to one of the live in carers and he had to go there for respite. So this last couple of weeks, I picked out a home, a really, really lovely place nearby, took Mum and Dad to visit it and put his name down. It will be a while before his name comes up but at least he’s been there now. I was hoping to look at social days there but he realised it was a rest home, so I think we will have to wait and try that again in a month or two. The idea is, that he gets to know a home then, should he need to go into one, it will be a place with which he is familiar.

Going to see Dad and Mum every week does help me to see the dappled light and shade of Dad’s moods. Sometimes he is on amazingly good form and is unmistakeably my father as I knew him, others, not so much. The thing is, as the disease takes more and more of his brain, you have to work harder to engage. I guess I have come to see him as some kind of Dad-shaped enigma, a puzzle that has to be solved. Sometimes he says,

‘I don’t like you Mary.’

When he does this, I rush over to him, fling my arms round him and say,

‘Nooo! You can’t say that Dad! Because I love you!’

He will then hug me back with all his might, laughing with relief, well, we both laugh with relief at that point. It used to hurt me a lot when he did this to start with, until I learned the hug trick. But now I understand that when he says he doesn’t like me, what he’s really saying is that he’s worried that I don’t like him. He has enough emotional intelligence left to know that while bad behaviour gets him the attention, and therefore the reassurance, he craves, it also upsets people. He’s asking for a different kind of reassurance, but in a defensive, spiky way, and when I give it to him, he relaxes and his bad temper fades. But it’s hard and it takes mental energy. And I watch the carers, because they learn these techniques more quickly than I do, so I can see what they’re going that works best and copy. That side of it must be much harder for my brother because all the carers are women, so he has to work out his own path. I don’t envy him.

Sometimes, when you’re caught up in the admin, the things you need to get and do, it’s easy to forget that Mum and Dad are people; to forget the human element of the logistical problem. It’s not always easy to give them the freedom to make decisions for themselves and I often feel caught in the middle, because I think, being further away, my brother takes it harder than me and is more keen to just sort it out, by putting Dad, or both of them, in a home. The gaps between his visits are longer, therefore, the deterioration in Dad is more obvious, Dad’s behaviour is always at its worst, and techniques that my brother has learned, which are successful one visit, may no longer work on the next. Because I’m lucky enough to live nearer, and visit every week, most of the coping strategies will last longer before new ones need to be found.

Despite spitting on the floor, throwing stuff about, making inappropriate comments and loving the F word above all else, there are times when we do get Dad back, even on the bad days. Just pop on a dvd of Dad’s Army and suddenly we are all laughing together, on the same level. Or sometimes, listening to music, looking at something outside, taking him for a walk, talking about my grandparents, he will suddenly light up and tell a funny story and we will all be laughing as if he was fine.

But that’s the thing I need to get my head round, of course. He is fine. I’m the one with the problem. He’s just disabled.

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Jumbled thoughts on metal detecting, dementia and happiness.

Yep, that’s a hell of a mixture and it isn’t as philosophical as it sounds, this one.

As you know, I go metal detecting, or to put it the correct way, I’m a detectorist. After a very, very long break, I got to go detecting the other day and I found … THINGS.

The ground has been too hard and the crops too high or digs just not … on for a long time. I have wanted to upgrade from my trusty Garrett Ace 250 to a new detector for a year or two. But I wanted one with a display so I could check my ears, so to speak – the ritzy ones give you a numerical scale and if you know your onions you can tell what the metal below you is from the read out. The ones that give you a reliable read out like this, though, tend to be north of a grand. The read out on the Garrett Ace 250 has not, to my knowledge, predicted more than a handful of the metal I’ve dug up with it correctly. So I’ve persevered with the Garrett, because I’d got to know it’s foibles by now, and started saving up for a high end machine.

Meanwhile many of my friends at the clubs I go to suggested I should forget about the display and go on my ears alone because that way, I could buy a high end machine for £800 or thereabouts rather than £1k plus. I wasn’t sure and I waited … until I was at a dig in autumn 17 and I realised that because the display on my Garrett is so random I hadn’t actually looked at it for the whole afternoon I’d been out and hadn’t been using it, while detecting, for some time.

The detector I’d finally decided on was chosen because it’s light and would sell for a good price if I didn’t get on with it. However, that’s the rub. It’s very expensive, even second hand. Bemoaning this, at one of the clubs I go to, one fellow popped up and suggested I forget about the really ritzy one, and the ritzy one’s smaller £800 brother and go for the baby of the brand which is about £600 new, but which you can get second-hand for much less. Then someone else at the club knew someone who had one for £220 and I bit his hand off.

Bearing in mind how incredibly bad I was at getting the hang of the old detector, I wasn’t expecting much so when I first went out with it and found some nice things I was well chuffed! And then I stopped finding … well … anything except old iron and crap. Some of the crap was just luck – when you dig up a bit of copper you might find it’s just a tractor part, or it might be a Roman coin – the only way to tell is to get it out of the ground and have a look. It just so happened that it was tractor parts. It was also getting tiny, tiny fragments of things which were taking ages to find in the freshly dug soil because my pinpointer is a bit dodgy. They could have been beads or medieval fasteners but they weren’t. They were tiny bits of lead.

Bollocks.

Dig after dig went by and I was well aware that most of my failure to find interesting stuff was less about the detector and more down to the plonker waving it about. You know when you’re doing something wrong and you just can’t work out what to do to make it right. I could tell the machine was giving me a lot of information, I just couldn’t work out what the chuff it was  saying. So eventually after going to about 8 digs and failing to find a blummin’ thing, I discovered that one of the detectorist’s suppliers I use had a sheet of hints for setting the thing up. I rang them and the lovely fellow there spoke to me for about thirty minutes and sent the instructions over. That conversation was a bit of a scales from the eyes moment.

The principle of the new (to me) detector – or at least, the technique that works for me – is the exact reverse of the other one. Most machines have three tones, high, low and iron. This one is no different, although sometimes it feels like there are four. The iron on this one is a pulse more than a note, then there appears to be a very occasional low tone a mid tone and a high one on top, but the low tone may just be the way my ears hear one of the high ones mixed in with the iron pulse. So then you trundle round, listening, and it’s like hearing a chord. When it bings, you listen for the tick of the iron tone. If there’s lots it means you’ve got a really big piece of iron, deep down, unless you can turn sideways and swing the detector a different way and it becomes a bing on it’s own with no tick. Then it’s not iron. It might be canslaw, a blob of lead or a brass tractor part, or, worse, a cartridge cap – which gives the exact same signal as a Bronze Age axe head, I’m told – but it is, at least, the kind of metal you’re looking for.

So on the one hand, I was doing it all wrong because I wasn’t listening for the ticking iron tone, so I was only getting half the information. On the other hand, I was doing the right thing digging the signals I was getting because if you leave the distinctive tone of an old shotgun cartridge, you may actually be leaving something … better. So while it’s a pain in the arse as, ever the optimist, I dig them up, I’m actually doing the right thing.

Then came spring, the crops seeded at lightning speed and I didn’t get to test my new detecting theories until the first weekend in August. Then, to my joy, I got to go digging for an afternoon. It was thirty three degrees centrigrade that day (about ninety Fahrenheit) so I was actually quite glad it was only an afternoon.

I arrived just as everyone else was eating their lunch making an ignominious entrance across a stubble field, the freshly cut stalks just that little bit higher than the flat panel underneath my car making a loud screeching sound, like someone running their fingernails down a blackboard, the whole way. I parked, approached the nearest detectorists and apologised profusely. Turned out they were all fed up, the ground wasn’t too hard but the going was hot and the finds and signals few and far between.

Armed with my new machine, and new information, I headed off to detect in the furthest field under a big tree. Surely there had been trees there for many years and I would find something someone had dropped while sitting under it. On the way, I found a bit of the cap of an old bottle, probably from the 1940s or thereabouts. Junk, maybe, but it was a start. I detected around the tree for a while. I could hear the iron buzz most of the time but finally got a proper bing tone on top. Turned sideways and sure enough, managed to reach a point where the bing was on it’s own. Up came half a 14th century thimble with a lovely green patina. This is on my bucket list so even half of one was me set up for the day. With ridiculous optimism, I set about trying to find the other half. I got a shot gun cartridge. Well, you can’t win ‘em all. Next a thing that looked like some kind of silver stud but it was too muddy to tell. Then two signals which I thought were iron and dug to check. They were.

I moved to another field and dug up a piece of old wire and then a THING. The THING looked a bit like a Georgian drawer handle, or possibly a Roman brooch, only not. My fellow detectorists hadn’t been so lucky, many complaining, and one remarking, as we packed up to go, that the only thing he’d found worth keeping were some blackberries! I was dead chuffed with my stuff, but the best thing of all was that I came away realising that I have finally begun to understand the equipment I am using.

As I drove home, delighted with my finds, I wondered if I had really been the only person to find anything good or whether it was more about my standards. The thimble was only half a thimble after all and the Roman brooch-like-probably-drawer-handle-object, which probably wasn’t either, looked ancient but could just have easily have dropped off a Victorian cart or something. The folks out detecting with me were far more experienced. Had finds like mine become junk to them? Possibly.

This got me thinking about life, generally. It seems to me that a lot of the time, happiness is less about what you actually experience and more about how you look at it. I read somewhere that if you get one group of people to sit in a chair and think about exercising – without actually doing any and another group of people to do the same without thinking about running around, the people who think about exercising a lot are 25% fitter than those who don’t. Without actually doing anything. This is the power of the mind and this is why I am always interested in the use of mental techniques in pain management for my knees.

And that got me thinking about happiness. Is the illusive search for happiness nothing more than an exercise in lateral thought? In my own personal experience, I’m beginning to think that maybe it is. There are probably people who, given my life to live, would be a lot more appreciative and happy than I am. Likewise there are probably people who’d be a lot sadder. It’s all about how you look at it. As humans we tend to hear criticism more loudly than praise, the criticism is the stuff that sticks. Likewise, sometimes, I think our preconceptions are that things are a lot worse than they really are. Good things aren’t always newsworthy.

I like to think that I am positive in outlook. I’d say I usually prepare for the worst but I like to think that I also hope for the best. I’ve had to skew my view occasionally, mostly over what I should be able to do versus what is actually possible for someone with my knees, pain management and stuff like that. Has that helped me deal with the situation with my parents? I don’t really know? I’m in my fifties now and I’m starting to see my friends going though horrific shit, their children dying, marriages failing, getting sick … I have no idea how they get through it. I feel a combination of luck, that I have McOther and McMini beside me and rank fear that something will happen to them. But mostly, I’m grateful for them, and nutbag cat and the lunatics I call my family and friends. I’d definitely say I’m happy, overall, even if things that happen do make me sad. And for me I guess the secret is just being interested in what’s going on around me. Is that it? Curiosity? Am I happy because I’m curious? Yeh, yeh, as in enquiring of mind people, the fact I am odd is a given. Is being happy just about looking at everything through rose tinted spectacles?

Or is it that, sometimes, good things seem to appear at the exact moment you need them? Is it a bit of all that, rose tinted but without the delusional aspect? Maybe.

But on good things … this weeks’ visit to the old dears was a gift. On the motorway, stuck in a ‘slow down’ as they call it, a chap in a van next to us beeped at us. I was a bit nonplussed, being, as I am, wizened and ancient and he being a rather glamorous dark haired gentleman in his 20s or so. He waved at me and did a thumbs up, pointing to my car. Then he held up his phone. The screen was black.

‘Uh?’ We said.

He beeped the hooter again, ah yes, the phone was live now and on the tiny screen was a picture of a bright blue car. I’m far too much of a blind old bag to be able to say what it was but I reckon, from the colour, that it was a similar Lotus to mine. Even McMini couldn’t tell and he was on the same side of the car. Mind you, we were all laughing our heads off by this point. We waved and did a thumbs up. People can be real dickheads when you drive a silly car, but sometimes they do mad things like that! It’s all part of the fun and the trick, of course, is to realise that there are probably as many positive things like this as there are negatives. That lateral thought thing again.

On arrival in Sussex. Dad was snoozing and McMini went and sat with him, iPad in hand, to play games and keep him company if he woke up. The lovely Carer cooked lunch and Mum and I went down to the bottom of the garden to pick beans. Then we came back and prepared them. Mum was, mentally, at the top of her game and we had the kind of deep and heartfelt conversation that we haven’t had since the end of 2015. It was fucking magic. I went down there feeling so lonely and came back feeling that I had got Mum back for 40 pure, joyous minutes. We had reconnected, but also it was fantastic to be able to discuss Mum’s life with her and what she wants for her and Dad and confide in her about my own.

And it was brilliant.

After thought …

The Roman brooch-like-probably-drawer-handle-object turned out to be a Roman brooch, just not one from around here. European form, not the Colchester one which, being just near Colchester, I would have been expecting. The stud thing turned out not to be silver at all and was, in fact, a button. Just goes to show that you can never really tell until you clean it all up. The thimble is still a thimble, or at least half of one.

‘Silver stud’ that wasn’t and thimble that was.

 

Roman brooch-like-probably-drawer-handle-object that turned out to be a Roman brooch after all.

 

 

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The days when it drives you crazy! #dementia

Today, I’m going to explain some frustrations about looking after vulnerable elderly family members. Here they are:

  • Masses of frustrating administrivia.
  • The whole thing is a monumental time suck. You’ll find yourself wondering how the fuck they ran their lives before you and the care team came along to do it for them.
  • If you are going to allow the vulnerable person any independence, there will be slip ups. You will not believe how comprehensively they can stuff things up and you will have to do a lot of gatekeeping and/or clearing up.
  • Things will also stuff up randomly with monotonous regularity.
  • You will need to remember a lot of things for them.
  • Keeping them social and independent may involve covert surveillance from the wings, so to speak, so you can fix any bog ups quietly in the background, or at the least, see them coming. That may feel like spying or going behind their back. It isn’t. You’re just supporting them so they can be free for as long as possible. Hold onto that when it gets tough, my lovelies. Because …
  • The gift, or possibly the illusion, that they are running their own affairs (even when they aren’t) is the best thing you can give them. Aim to let the person have as much independence as is humanely possible, for as long as possible because however vulnerable they may be, they are not children, and allowing them to take responsibility for things is great for their confidence if they are supported the right way.
  • You will be amazed how crass people can be when presented with a dementia sufferer.
  • You will be amazed how lovely people can be when presented with a dementia sufferer.
  • There may be times when you feel trapped and cornered by the crushing weight of the responsibility and will wish that you could just run away and never return.
  • Sometimes you’ll wonder if they wouldn’t be better off dead. It doesn’t matter how ableist that is, it’s going to happen especially if one of them has told you, repeatedly, that  they hope they will die, ‘before I lose my marbles. I can handle pain, but I don’t think I could bear that, or knowing how awful it will be for you.’

In short you will have many thoughts that may not be pleasant but try not to beat yourself up because I’d guarantee that most of them are perfectly natural. You have to accept that your negative feelings are as natural as the positive ones. You have to accept yourself and look after yourself as well as them. Because if you go down, everything does!

When it comes to the time, you won’t mind putting the time in, and actually, most days, you’ll feel that it’s an honour. But on other occasions you may be roundly cursing your loved ones, especially if you have to drop everything and sort out whatever mess they’ve got themselves into. It’s nothing to be upset about when that happens so long as you don’t do it in front of them, because you’re human, and there will be times when it and they drive you buggy, no matter how much you love them.

Case in point, this week. It’s has been a bit hectic. Mum has reached the stage when we should really be activating the lasting power of attorney over her finances as well as Dad’s but if we do that, she can’t have a cheque book or bank card and neither can I. Running someone’s day to day finances and shopping needs from over 100 miles away isn’t going to be easy if none of them have access to a cash point and Mum can’t pay for anything by cheque either.

Sure, we can do it, but it will involve transferring hundreds of pounds to my own bank account every week and getting them out, putting them in an envelope and taking them down to my parents’ place. To be honest, I don’t fancy walking about with £500 plus on board, even in my quiet market town. Then, we have to hide the cash at Mum and Dad’s. We can put it in the safe but their having all that cash sloshing about is still not a prospect I relish.

Also even if I did it, what happens when I go away on holiday?

God bless my Mum, she managed to spend nearly £300 on some manure the other day. It’s excellent stuff, but she didn’t really need 36 bags. She used to, because she used to use a lot of it and would pass it on to friends. But not anymore. After that, and other scares, and a brief discussion with the carers we decided we’d hide the cheque book and card in the safe. Needless to say, when I looked in there, I found a bunch of cash I’d put in for emergencies while I was away on holiday a year ago – this was at a point where we were trying to have me bring cash each week and it wasn’t working. Obviously, there were four old tenners, so I had to put the new ones from my wallet in and take the others home where I could go into ‘any bank’ to swap them.

When I got home after three and a half hours of joy round the M25, I rang the fellow who sold her the manure. He wasn’t there so I left a message.

He didn’t call back until the next day and was extremely understanding but couldn’t really do much more than give us a discount and promise not to call again next year. I’ve had at least three bags of his manure, via Mum, so I do know he is legit but it was a pity. He also rang me just as McMini and I were leaving the house and it took us half an hour to sort it out. Half an hour that I didn’t really have.

Having agreed that Mum and Dad would have to keep the manure, but that he’d tear up cheque and I would pay a reduced sum by BACS, the next day, McOther then pointed out that I should wait to pay him until he’d sent the cheque back. Or stop it and then pay him. So then I had to stop the cheque.

However, HSBC’s Indian call centre came up trumps here. They still can’t pronounce the name McGuire but they are now more intuitive. Today I spoke to a lady who stopped the cheque for me and then, when I explained why I was stopping it, she waived the fee. Last time, when I was checking that there wasn’t a standing order pending for an insurance policy on her white goods that Mum had bought and I’d cancelled, the guy put a note on that no standing order should be approved without asking me. A stark contrast to the bastards at NatWest who would only change Mum’s old tenners if I had an account with them. Yes, after the thirty minute delay of the call with the manure man, it took us another fifteen to find a bank in the centre of town who’d swap the stupid tenners. Thank heavens there’s a Santander, where, ironically, I have an account but the teller swapped it all over without even asking if I do.

So the moral of this story appears to be don’t bank with NatWest, they’re a bunch of cAROOOGAHts.

It looks as if the suckers list Mum and Dad are on has just changed hands again and the ‘call blocker’ bastards are phoning every day, along with people ringing to say that the TV/Washing Machine/insert white goods here ‘insurance’ policy is due when there isn’t one. The former are scamming bastards out to rip off the vulnerable. The latter are selling worthless, overpriced services by cold calling people who are on the Telephone Preference Service (which is punishable by a £5k fine) but they are at least legitimate companies with websites and directors registered at Companies House even if their corporate ethics are in a fucking mess.

All of them call themselves something generic which is searched for lots on Google; Home Insurance Services or Call Technology Services, Home Services Limited or the like, things that will ensure any internet search for a record of their existence is buried under pages and pages of results. The other trouble is, if you are kind of person who purchases a suckers list in the first place, you’re not going to worry about selling it on with records that are duff when you’re done. As a result, every three months or so, Mum and Dad get a massive surge of these scam calls and then, as the shit-heads realise there are gatekeepers, the calls fall away until the list is sold on again.

Bastards.

However, I have a plan for the next call blocker selling weasel who phones when I’m at my parents. It’s going to be a gas! I’ll let you know how it goes.

I have a cunning plan … hnur, hnur, hnurrrrr.

 

 

 

 

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And on the up side …

Just a quick one today. First of all, report on Dad. This week he was so much more himself it was unbelievable when I visited. Turned out that after about ten days of not sleeping the doctor came to see him and gave the carers a light sleeping pill. This has worked wonders. Dad had not slept for ages and as you will have gathered from my previous post, he was behaving abominably. I had started to worry as to whether or not he should go into a home. However, all the carers have reassured me that it isn’t necessary, what we have to do, as the changes in his temperament happen, is ensure that Mum spends more time doing other stuff. She needs to get out and away from the atmosphere at home when it’s charged. The time she spends with Dad needs to be batched and in smaller high quality doses.

That all made excellent sense to me, but what I was overjoyed by, was Dad’s return to form. He was saying please and thank you, there was no swearing, no spitting. His continence has improved again so he knows when he needs to go to the loo. His whole outlook is breezier and sunnier. It’s amazing what a little thing like a good night’s sleep does for a person. The carers also raised a good point which was that he is a very intelligent man and his mind needs to be stimulated. Dad loves a trip out and they have combined this with … well … basically they use him, and his wheelchair, as a shopping trolley. He loves this because instead of saying, ‘would you like to go for a walk,’ they can say, ‘John, would you mind coming to town and helping me do the shopping?’.

One of the biggest things about dementia is that it makes people feel useless. Giving them things to do, or finding ways to spin pursuits dementia sufferers enjoy doing as helping others is great for the person’s self esteem. It was so lovely to see Dad back to cracking jokes and taking the piss out of me about my trousers.

‘I must buy you a new pair of trousers. Those ones are terrible.’

‘Thanks Dad.’

It’s amazing how sometimes the answer to a problem that seems insurmountable turns out to be simple. Oh how I wish the rest of my life was that straightforward! I am drowning under a mountain of admin at the moment and every time I finish one thing, another one comes in. All of them are ten minute jobs that go wrong and end up taking hours. But hey ho, it could be so much worse.

Since things are better, I’d like to share one of Dad’s favourite jokes.

The Statues and the Wish

Two statues, male and female, spent a couple of hundred years in a London park, their plinths facing one another. Come rain, or shine they were there and gradually, they fell in love. One day, God turned up and said to them,

‘Righty oh. I’ve seen what’s going on down here and I’d like to give you an hour of life, you can do whatever you like.’

A look of perfect understanding was exchanged between the male and female statues.

‘It’s not just the bastard pigeons either!’ said Churchill. ‘Fucking Banksy!’    *

‘Come on!’ said the male one. He took the female’s hand and they rushed off into the bushes together.

There was a lot of rustling and much giggling. God whistled a tune and nonchalantly made his way to a nearby bench where he sat and enjoyed the sunlight, very much ignoring the continued giggling and rustling from the bushes, while he answered some prayers using the app on his celestial smartphone. He was surprised when, after forty minutes, the two statues emerged from the bushes, breathless, dishevelled and still giggling uncontrollably.

‘Wait a minute, you haven’t used your whole hour yet,’ said God.

‘Really?’ asked the female statue her eyes shining with joy.

‘Really,’ God confirmed. ‘You have another twenty minutes.’

‘Oh good!’ The female statue gave the male a sly look.

‘Shall we do it again?’ he asked her.

‘Yes please!’ she said, ‘Only this time, so it’s fair, why don’t I hold the pigeon and you can shit on it?’

I put this one on because George IV’s horse looks completely gobsmacked. *

* I have no idea who owns these pics, I got them off Pintarest. No infringement of copyright is intended and I will happily remove them if required.

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That’s Alzheimer’s not Dad.

The post is a bit grim but at least this picture is pretty!

A couple of weeks ago, someone shared one of my posts of dementia-related whinging on Facebook – this post if anyone’s interested – and it got an interesting comment.

There is ample opportunity for me to have misconstrued here but, as I interpreted the comment, I think it basically said something along the lines of that we don’t really know why some folks get to die suddenly or well and others get something a bit more operatic; by which I mean they get the real world equivalent of twenty minutes of singing and an encore after a wound that should have killed them instantly. The gist was that ours is not to reason why.

The poster went on to say, if I’ve understood correctly, that if it was God’s will that they linger who are we to argue, and to just have faith that it’s all happening for a reason, that it is not our place to judge or begrudge them their time in the twilight zone, and we can give them that time. That this process of slowly withdrawing from one world and preparing to step into the other is clearly of spiritual importance in some way and we should accept our part in it with grace. Thinking about it, I should probably post what was said. This is the comment in question.

It’s a kindly, wise comment and clearly meant to give comfort but instead, reading it, I feel as if I am being chided for my lack of faith, and for my selfishness in feeling that fourteen years of this is a tad fucking long. I found myself wondering how much of the poster’s own care/worry marathon they had completed, two years? five years? seven? ten? I’ve reached the stage, now, where I worry that the pressure of worrying about my folks may do me in; that I may not out live my parents. I mean, I can’t die! It would kill them. Then there’s the whole cancer thing. Have you noticed how many people who have been through a tough patch like this one end up going down with cancer just as they get right again? I dearly hope I avoid joining them.

Clearly the commenter has a great deal more grace and faith than I, but I confess, the thing about the comment that really threw me was that I had no idea that anyone could so completely and utterly miss the point of why I post all this stuff.

Bearing that in mind, I thought I’d better explain to clear things up! Because I accept my father’s fate is clearly not a swift and merciful death, trust me, there is no mercy in dementia. Indeed, if this is the greatest mercy they can wish for I shudder to think on the horror of any alternatives my parents have missed. Likewise, if they have to suffer this now I hope they have manifold blessings in store. My father has been losing his memory the whole of my son’s life. Even when my lad was born in 2008, Dad couldn’t really be left alone. It began before that, in 2004. Fourteen years is a fuck of a long time in anybody’s book. It’s probably my fault and I’m the one being punished. I expect I snogged too many boys or wanked too much as a teenager or something, but I digress.

It’s no good my railing against fate, it merely wastes energy. I just have to bite the bullet and get on with it. I will endeavour to give my parents as much quality of life and freedom of choice as possible, and I am trying to make this twilight time for them a time of gentleness, peace and compassion. That my brother and I aim to do that, however painful it may be for all of us, is moot.

But you know what? Just because my brother and I are doing what we hope is the right thing, it doesn’t make it any more fun. And I doubt the feelings I have experienced as I’ve watched my father lose his mind over fourteen long years are any different to those of other people in my position. And that’s why I write about this.

When I write about Dad’s sickness on my blog, it isn’t about my brother and I doing the right thing by our parents, it’s not even about our efforts at trying to. That’s a given.

No.

This is about what tenderness and mercy to one member of a family costs the others.

Similarly, I doubt the dismay I felt as I realised, three years ago, that my mother also had dementia, is unique. If there is anything merciful in this perhaps it’s Mum’s dementia. Because I do not know how she finds the strength to endure some of the stuff Dad says to her and at least if she forgets, she won’t know what she’s lost.

The posts I write about my father’s Alzheimer’s and my mother’s dementia are not here to give you answers, they’re here to show you my reactions. Because I think I’m very average and I suspect most of us feel the way I do but may not admit it, not even to ourselves. Well if that’s you, I’m writing this so you can see that your reactions are normal. The things you think about the situation that are so dodgy and shameful that they almost hurt? You aren’t alone.

That’s the only gift I can give to people suffering through this. Thousands of people have come before us, doubtless many thousands will come after. You’re not alone, I’m not alone, we are united in this trouble.

When the dementia patent in your life does something that completely shocks and repulses you, it’s OK to recoil, to feel sad, hurt, horrified and angry. It’s OK to feel those things because it’s natural, and yes, it’s OK to feel trapped by their neediness. The key is not how you feel but how you act when you are with the person affected, the key is not whether you are disgusted but whether you show it. They no longer understand or even realise that their actions are unacceptable. Much of what they are doing is caused by them feeling frightened and alone, you can reduce the number of melt downs, if you can get alongside them and have them working with you not at you, but if you fail, well that’s OK, because there’s always next time, when you can try something else.

Showers, but also sunny intervals.

Also, attitudes to dementia are changing and I write about things that happen to us which reflect that change because I want people to see it and know about it. I want people to realise that if they want to take a dementia sufferer out somewhere they should go right ahead. It’s just a disability. You don’t have to hide them like a shameful thing but at the same time, you need to have an idea of what you are all facing. I describe our journey to help you understand what is coming as you embark on yours.

When I was a kid, if someone got Dementia it usually went something like this. Person gets dementia. No-one is allowed to know it’s all kept secret because it’s a Bad Thing. Person does something a bit strange in public which a handful of folks hear about but which is not ever passed on but is just mentioned as, ‘that time at …’ or something similar. Person disappears from all social life. Five years later, you attend their funeral. I used to wonder what happened in between. Now I know. And I want other people to know and understand. That, yes, it is horrible, but it can also be uplifting. I want people to know that they needn’t feel afraid, that it is unbelievably harsh but they will cope.

While Dad can still enjoy the company of others – and he can most days – I want my dad to be active and social. To be able to go out and Mum with him. I want him to be able to go have lunch at the pub or whatever. Amazingly, they attend a huge number of social events but it is getting more and more difficult now. Bless them, a decent number of his friends now come to him, or if they’re no longer mobile, ring him.

As I said, attitudes are changing, although it takes a certain brazenness to be a carer. For example, back in 2011 when we were on the ferry to the Isle of Wight. Dad went to the loo and got a bit disorientated while he was in there. He came out with his zip open and his cock out. A lady sitting nearby rushed over to him, just as I noticed and ran over to him, too.
‘Oh thank you, I’m so sorry,’ I told her when I got there.
‘Is he yours?’ she said.
‘Yes,’ I said as I turned to Dad. ‘Dad, we need to pop back in there for a moment.’
‘Oh dear, do we?’
‘Yes,’ I leaned over and whispered, ‘You’ve forgotten to do your flies up.’
He guffawed and we thanked the lady and went back into the loo.
‘What am I coming to? I left my cock out,’ he said when we got inside. We giggled some more and he made some joke about Winston Churchill’s reaction when someone pointed out his flies were undone, ‘The dead bird does not leave the nest!’ my Dad said in his best Churchill voice. Giggling, we sorted it all out and we started back to our seats. We passed the helpful Lady so I thanked her again. She gave me a big smile and said,
‘Not to worry, we have one of our own at home!’
It was all done with a wink and a smile at Dad, too, to include him. Naturally he joined in. People are kind these days, when you rock up somewhere with a dementia sufferer.

Likewise, when your father clears his throat, leans over the side of the chair and gobs a massive steaming greenie onto the kitchen floor in front of company, as if that is the most normal thing in the world, a certain brazenness is required. I reckon it’s fine to use graveyard humour to make light of it, or any other form of tasteless joke that will get you through the surreal horror you’ve just witnessed. We avoid jokes at Dad’s expense in his presence and we avoid them where we can if we are not in his presence. However, if treating your father with the decency and compassion his humanity affords him to his face means laughing at his child like antics, and calling him Spoilt Bastard after the well known Viz character behind his back, I say knock yourself out. Because if you can’t do both then do what it takes behind the scenes to achieve compassion and kindness where it matters, when you’re with the person.

Recently, a couple of visits have gone badly and my father has been unremittingly vile to me, not to mention Mum. Some days, he doesn’t know who we are any more. He doesn’t remember that he loves us. Except that he is always pleased to see me initially. However, my gentle, good-humoured, loving father – with the wicked sense of humour – is now, quite often, just wicked. He refers to me as a trollop, or a fucking stupid woman, or sometimes, for variety, a stupid fucking woman. I take no offence since he refers to nearly all the females around him like this.

But I miss my dad. I miss my mum. There is much more of Mum there but we have still lost enough to miss. Dad, is still there too, but we have to dig hard for those precious shiny glimpses of treasure. And I’m raw about it at the moment because at my Uncle’s funeral last week we prayed for the sick and when we did that we prayed for Dad and Mum. And it was the sweetest, kindest thought, a truly lovely act on their part, and so touching, and I nearly lost it, and I realised how much grief there is; an enormous, bottomless black pit of the stuff at the centre of me. Too much to look at head on. Too much to acknowledge. I can see it all the time out of the corner of my eye. Look it in the face and I am undone. And as the male lead says in one of my books, ‘I can’t be undone.’ For the sake of my parents and also the rest of my family, I have to hold it together.

And the weird thing is that even with this huge bottomless grief, this mourning that will end in death, but which, without a death, cannot end, even though it’s fourteen years old and huge and dwarfs me somehow, I do hold it together. If I have any kind of faith, I suspect that’s where it counts. Because I’m no saint. I have no grace. I’ve never been one to cope well with a long drawn out process. I do not know how I keep my grief about my parents in its box, but it happens, and I doubt the strength required is all coming from me.

In the face of this, I’ve come to believe that there are really only two things that matter when dealing with dementia:

Number one. Trying to hang onto who the patient was and what it was in him we loved. We look out old photos, read letters, memories from the boys and girls he taught. We do whatever it takes to keep in touch with the real person who is living under that disability. We do it because it’s the only thing we can do to hold onto him.

Two. On the days when Dad is vile to me; like the time when he grabbed the wee bottle from my hand on Sunday and tried to throw his warm piss in my face, shouting, ‘Get that thing off me you bloody trollop! I’ve finished, you stupid fucking woman!’ Or yesterday when he did the same thing to the carer in the loo, all the while continuing to wee copiously down his trousers and onto her foot, proving conclusively that he was NOT finished, not by a long chalk, it’s important to keep a sense of humour; to laugh about it – and we did laugh because what else can you do? I mean, it could be worse, it’s not as if I had to hide behind the sofa while he searched for me with a knife (genuine dementia story, luckily, not mine). It’s also important I keep a firm enough grasp of who he is. I will always try to treat him as the man he was. Dad is in there, somewhere. I refuse to believe he is wholly the man he’s become. Because that is not my father. That is Alzheimer’s.

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Chin up lass!

There is a popular trope that being happy is just a state of mind. It’s a little more complicated than that, I suspect but I think there is something in the idea that trying to cultivate a positivity of outlook can help. For me it’s definitely about noticing things. Noticing the smell of hyacinths from the flower bed beside our back door. Noticing the way the birds start to sing way, way more loudly from January on. Noticing how even in December, the bulbs are starting to break through. If I wasn’t lucky enough to spot these signs of hope and spring, naturally, I suspect I would be a much less happy person. But once you’ve noticed this stuff once, maybe you look harder for it the next time? Who knows.

This week, has been … interesting. Really tough at times. Not helped by a dash of sleep deprivation; they resurfaced a bit of our street … at night and, apparently, with the help of the Mysterons.

They also foolishly parked their rollers etc outside my house where I could eyebomb the living smeck out of them so there’s an upside to everything but …  after a couple of noisy nights mental energy was low by about Tuesday and by Wednesday I was running on fumes – no not my farts, I’m trying to say there wasn’t much fizz in the tank – and there was even less after I had to sort out a bit of a ‘situation’ at Mum and Dad’s. Suffice to say, I should be driving to Hexham right now to celebrate the 50th Birthdays of two lovely friends from school. And I’m not.

In my defence, it’s a five hour trip each way and after my uncle’s death, the night works and a furore (now sorted) that blew up around my parents this week, I decided that if I was being realistic, there were not enough spoons/fuel in the tank – my tank, not the car’s – to do 600 miles in bank holiday traffic. I cancelled. I feel bad about cancelling but sitting here right now, I know I’ve done the right thing.

Meanwhile alongside these it has been a week of small and unusual things. Lovely things that have lifted my spirits. Rare stuff. It’s strange how these things happen sometimes, often when the rest of your world is at its worst. Little mini-boosts that filter through to you, as if the world is trying to tell you, in it’s own small way, that despite feeling that you haven’t measured up, it’s alright.

First, an account from a friend of someone waxing lyrical about my intelligence – as in that she thought I had some – left me with a nice warm feeling. The Scottish man who served me at the market today who asked if I’d be having those strawberries and without thinking I said, ‘Aye.’ The moment in church when a lady visiting, who had the misfortune to sit near me, tapped me on the shoulder at the end of the service and thanked me for my singing. I’ve discussed my singing before, an attribute about which I was teased a great deal at school – so much singing, so little of it in tune. But recently people have been saying how nice my voice is. I’m not sure if something’s happened to my voice, if the people in church are tone deaf or if I’ve always had a decent voice and the girls at school were just jealous. Whatever it is that’s happened there, I suddenly feel I can sing. I’ll take that and be happy!

This last fortnight, after the death of my uncle, I felt very low, about Dad as well as about him. Strangely, I’ve been seeing butterflies and rainbows everywhere. Butterflies, obviously, because it’s spring. Rainbows; I had a memorable journey back from Sussex to Suffolk this week; two and a half hours over waterlogged roads in bright sunlight. Lots of spray, car got a Sussex respray and was covered in white chalky puddle water stains, visibility was terrible, lights on but blue sky above and rainbows dancing around me everywhere pretty much the whole way home. That was a hell of a thing.

This is hardly a phenomenon, either, after all, it’s typical April weather really, showers then sun but it’s not something I’ve witnessed in quite such abundance before and it’s different to the norm so it makes for a change. Some ditzy article I read somewhere, which I can’t find now, of course, talked about about how butterflies are messengers from your guardian angel to let you know s/he’s listening, while rainbows are messages of reassurance from the cosmos. Butterflies are wonderful, they’re always going to cheer me up and as for the rainbows, well, when something is able to make a British motorway look beautiful then, dubious theories on cosmic reassurance aside, it’s still uplifting.

Then after a fair time with no reviews one from ‘An Amazon User’ for Few Are Chosen popped up this week. I always think that makes it sound like some kind of drug.

‘Hello, I’m MTM and I’m a recovering Amazon User.’ [applause] ‘Yeh, it’s tough but I’ve been clean several months now.’

Sorry, where was I? Oh yes, the review. Actually, they left it two weeks ago but I only found it this week. It reminded me of something my brother in-law said. He thought there were two interesting, and slightly amazing, phenomena about the reviews of my books. The first thing he pointed out was that if you look at most reviews on Amazon, generally across the site, while some are superb far more are less than articulate. He felt a surprisingly high number of reviews for my books were witty and amusing, as if the reviewers loved the jokes in the books and are joining in. If that’s true, it’s a lovely thing for them to feel and I’m delighted it’s happened. The second thing he thought was intriguing is the fact that even the one-liners are reasonably well spelled and punctuated, suggesting a level of intelligence in the readers reviewing my books that is way above average.

Mwahhahahrgh! So there we have it. Congratulations to anyone who has read my books, then. Clearly you are very smart and arbiters of good taste! Phnark! It is a cheering thought though, because it makes me feel that I am reaching my intended audience; eccentric people like me. And if the people who feel moved to write reviews of my books want to join in with the jokes then maybe there is the possibility that the small beginnings of a community of … I dunno … K’Barthan-heads? Is forming. Maybe, or maybe not but it feels like a little seed of hope.

And I needed all those small things this week. You see, one of the hardest bits about the death of my uncle was the way it made me feel about about Dad. Sometimes, when I think he’s suffering or unhappy, I wish Dad wasn’t around, not because I want him dead but because it’s hard to see him suffer, it’s difficult not to see his disability as Dad going under and dragging Mum down with him. It’s horrible to think either of them is unhappy. Other times, when he seems cheerful, I see, with crystal clarity, that he is a man with a disability and I am being incredibly able-ist and condescending. At least it makes for a new topic to beat myself up over.

In a minor miracle this week, something in me was able to let a lot of that baggage go. Dad is, mostly, happy and enjoying life, as is Mum. That’s really all I can hope for. No doubt the worry will return but for now, I’m OK with the situation again, things are on an even keel. The house I grew up in is still a place of laughter and compassion. The rest is kismet, right?

Perhaps that’s all you need to do to be happy; look for the small gifts, be kind to yourself and be kind to others.

Who knows? I leave you with the review, because it was lovely. Thank you and Godspeed ‘Amazon User’.

Don’t Giggle Out Loud
You know when you are sitting in an airport and the guy next to you starts giggling at the book he is reading? And it’s so annoying because you can’t quite see the title? This is the book. The anti hero, The Pan, is terrific, his search to find the Chosen One before the ultimate baddy Lord Vernon gets his evil hands on her, The Swamp Thing, all go to make a refreshingly funny and well laid out plot. Oh and did I mention the car chase? or the lovely old man, or the drink that hits the spot, especially of the evil one’s soldiers? But that would spoil the story for you. Go read it yourself. It only has five stars as Amazon is tight with them.

 

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It’s my party and I’ll cry if I want to … #dementia #ranting

I’ve sort of been debating whether or not I should post this. I wrote it just too late to publish last weekend and things have been so much better this week that, in some ways, it’s no longer relevant.

Except that, from the point of view of the people who read this, I’m now thinking that actually, it might be helpful. Everyone has bad days, everyone feels swamped sometimes and if that’s you then at least when you read this, you’ll know you’re not alone, that it happens to everyone, that there are people out there who can sympathise with how you feel. No-one’s life is roses the entire time and I think being honest about that is allowed!

Basically, I’m feeling a bit ‘meh’ today. Like this.

Some days I feel a bit like this.

Ten years ago, heavily pregnant, I went to a lot of fortieth birthday parties. I thought, blithely, that I’d organise one of my own but then I spent the actual day doing a lot of drugs and having a c-section.

Never mind, I thought, I’ll have a ‘Not my 4oth Birthday Party’ when I reach the magic age of 42.

But then Dad began to get really ill and I got in a tizzy and I had a two year old, for fuck’s sake, and my in-laws sold their house with no-where to go so they had to come and live with us and my head imploded. My in-laws are ace and I’d never have done anything else than put them up, but I found having them here really difficult, and I was cross with them for coming here, which threw me completely. I hadn’t seen it coming and I was utterly disappointed in myself not to mention, completely perplexed. I mean, I couldn’t understand it at all. Why was I so angry? Why was I finding it all so hard? Even after they had sorted themselves out and left I was asking myself what on earth had got into me.

Finally, a couple of months after they’d gone, I worked out that my irrational anger stemmed from the fact that with them in the guest room, my parents couldn’t come to stay and worse, they just happened to be in the guest room over the last summer that my parents would have been able to visit us here. It was all bound up with the subconscious realisation that I would never be able have my folks here again and my subconscious was blaming my in laws for being homeless at the wrong time! Obviously it couldn’t do anything constructive like give my conscious mind the heads up but at least I worked it out eventually. As I said last week, I’m a bit slow. Once I’d finally cottoned on I cried most of the day but it was such a huge relief to work it out, and the next morning I woke with shingles, which I still believe I had instead of a nervous breakdown.

Looking back on it, not a great year for trying to plan a party then, that one. Indeed, I completely forgot about it and I guess I should consider organising a thought as an achievement at that point! Yes. Party planning was definitely right out. So I thought I’d wait until I was 45 but neither McMini nor I had a party that year because we got hit by a car and then I was going to be fifty so soon that there wasn’t much point.

Thus, it was that celebrating hitting 40 never worked out and here I am, looking down the barrel at another Important Birthday with an equally huge lack of enthusiasm to do anything about it. Although at least I’ve remembered, I suppose that’s a step up.

Originally, I was in the clear. McOther told me he would organise something and not to worry but a month ago, he fessed up that with his work the way it is, and no prospect of his work-life balance moving towards the ‘life’ end of the see-saw any time before he retires (0r, more likely, dies of some stress-related illness) he wasn’t going to be able to organise anything.

This has left me with a conundrum. I feel that having failed miserably to organise a party-like ‘event’ for my 40th Birthday, even if McMini’s arrival was pretty cool. It behoves me to do it now. So far, you’ll be impressed to know that I’ve done a really good job of ignoring it and hoping it goes away.

The thing is, when I think of a party, I think of a bar-b-queue or a marquee on the lawn, and caterers and everyone I know; family and friends, turning up to eat food and get pissed and have a good time. And I’m thinking of, possibly, a couple of speeches. You know, kind of like a wedding only more relaxed. Except that I realised that one of the main reasons I don’t really want to have a party is because at all the events like this I’ve had so far, my parents would be there. And in this case it wouldn’t be an issue if they were dead, we could raise a toast to them and remember them fondly, but they’re not dead. They’re alive. But they can’t stay here; no chairlift, no 24 hour care etc. Putting aside the fact that my dad … well … when you hug your father goodbye and he sometimes gropes your arse you know it’s getting to the stage when public appearances have to be handled carefully and only attempted on the right kind of day.

So that’s the nub of it. If I have a party. I have to plan it all as if my parents are dead while they’re alive. And few things bring home the fact they are both losing their minds – and that my brother and I get the special joy of watching that happen – more forcefully than planning an event they would have attended, but can’t, as if they are dead, when they’re alive. Which also highlights that they are … kind of … undead.

And it drags up all that other stuff about how part of me almost wishes they were dead because it might be the most merciful thing and because watching them fade away is so painful. And the fact that some days I rejoice that they’re around but others their predicament is like some enormous millstone around my physical and emotional neck that just gets heavier and heavier and heavier and cannot be put aside. Ever. And it brings home how hard it is to live a normal life with this crippling sadness and makes every other load I have to carry so much heavier. And I try to see the joy in life, I really do, and normally I’m quite good at it. But sometimes it’s extremely difficult especially when the physical pain of my knees over the last year has been at about the same level as a newly twisted ankle every. fucking. day.

Thinking about it, I guess I just want to be more than someone other people need; a dead leaf blown about on the winds of other peoples’ neediness, but it’s hard to find the time to be anything other than mother or carer and when I do, that has to be spent looking after my stupid bastard knees, or creeping round the house taking about ten hours to do the amount of cleaning able people do in two minutes. Perhaps I’m getting carer fatigue. Is that a thing? Dad has been losing his mind since 2004 and Mum since 2015. It’s a long time to keep CBT-ing yourself and to drag that shit around and it takes more and more time so then of course, you end up with less and less time to yourself; pretty much none once you’ve taken care of the physio/gym/exercising/pain management routine.

This last two weeks we were away and in the first week of our holiday, while the others skied, I wrote. I only managed an hour or two each day but it was so unbelievably wonderful to get my life back. Once I’d done enough walking or swimming to feel I could eat as much as everyone else, I sat down at the table. There was no washing or cleaning to be done. There was no meaningful internet so none of the things I was supposed to be organising – the Parish magazine, for example – could be attended to.  No stupid shitey little ‘can you book so and so’ or ‘can you find a weekend when thingwat and oojah can visit’ or jobs that should take ten minutes but end up taking for fucking ever.

There was no replying to emails, no organising anything, no futile attempts to get folks round for play dates with McMini which end in failure because other people work or are more organised than me and sorted their free days months before the holidays began. That week of writing was a tonic but it has made it all the harder to go back to the, ‘treat yourself to 20 minutes a day two days a week if you’re lucky’ regime under which I usually live. I think I’m feeling this now because it’s the summer term, which means that, in the first half, at any rate, it’s pretty much all three day weeks for me so I’ll get bugger all done. So as we do the inevitable PD day – heaven forfend that the number of full weeks this half of term should outnumber the short ones – I’m just looking down the barrel of disappearing up my own arse as I try to do the stuff I usually do, organise myself enough to be able to attend and plan social events and steel myself for the fact I have to plan a party and probably won’t write anything until July now.

So, many apologies, but sometimes, I think it’s OK to have a bit of a rant about things, like this. When it feels as if life has punched you to the floor, it’s alright to kick your legs about and scream like a toddler having a tantrum every now and again. You know, just for a moment or two, before you pick yourself up and carry on. I have therefore added this post to the ‘rant’ category but not the ‘massive rant’ category on this blog. (Yes those categories really do exist.)

On the up side … there’s my boys and McMini. On Monday, McMini and I spent the day together. It was hugely entertaining. For example, I sat with him while he was doing his homework. It took about three hours because his concentration levels came in three millisecond bursts but he got it done and we had a very entertaining conversation along the way. How’s this for an opener?

‘Mum, it’s interesting isn’t it but you would think phlegm was spelled f-l-e-m wouldn’t you?’

At no point did the word phlegm crop up in the pursuance of his studies, it’s just a random thought that occurred to him. Or there’s this one, from our holiday, in a restaurant.

‘Hey Mum! Those curtains are just like the ones in Jabba the Hutt’s palace.’

This one was followed by a lengthy discussion as to whether frogs use fart and if so, whether it will help add lift when they jump – complete with demonstrations by McMini, naturally. All conducted as he demolished a bowl of frog’s legs and compared himself to Jabba the Hutt in Return of the Jedi, you know, when he was eating those little squeaky things.

Then there are the Horrible Choices questions.

‘Mum, which would you rather? Be killed by a giant sword or run over by a steam roller?’
‘Neither.’
‘No Mum, you HAVE to choose.’

Or the use of a glue gun to make a sniper’s rifle. Amount of time from McMini seeing the glue exit the front of the gun to our making ‘fake’ drool: too short to be measured by current instrumentation.

And there’s his continued torturing of Alexa. Yesterday’s questions include:

Alexa, how do you make chocolate ice cream from poo?
Alexa, what does urinate mean?
Alexa, what is urine?
Alexa, where does poo come from; the willy or the mouth? (He’s so desperate to make her say ‘bum’.)
Alexa, what is poo?
Alexa, can you eat poo?

So purile but so funny. Because I’m really mature. By next year McMini will probably be rather more mature than I am but at the moment, hanging out with him usually involves us giggling until we cry at some point.

Meanwhile McOther and I are watching TV and I ask, in exasperation with a character, why she is sleeping with someone she knows is a baddie on the other side,

‘Ah, keep your friends close but your enemies closer,’ says McOther.
‘So that’s why you married me!’ I say. McOther laughs and I get a little fizzy buzz from amusing him.

I would be so lost without them.

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