Tag Archives: M T McGuire

Out of the mouths of babes and … budgies.

I’m posting by special request this week, I mentioned my grandfather, my father’s father, in a post on a forum and was asked if I’d say a bit more about him so, fresh from Setting Tripwires for Granny, here is a little bit about him …

Gin-Gin was my father’s father, StJohn Bell (Gin-Gin is pronounced exactly like it’s written, as if someone’s saying the name of the drink, twice. Much like his name, StJohn—which is actually pronounced sin-gin—and indeed, that’s probably where Gin-Gin came from). He was a larger than life character, I think he worked for the Sun Alliance, was chairman of the district council and was full of life. He was always laughing and he had a gold tooth which could catch the light when he smiled. He was known for his draconianly right wing views. That said, despite views which, in those days, put him firmly on the right with Norman Tebbit and company towards the lunatic fringe of the Conservative Party, he would probably be standing a little to the left of centre in the modern version such is the gargantuan crazy-quotient in both that party and politics these days. 

Gin-Gin had white hair which, like my father’s and my oldest uncle’s receded very slowly from the age of about thirty – it never totally disappeared. He had a hooked patrician nose, very bushy eyebrows, underneath which sat a pair of green/blue (I think) twinkly eyes, a ready (and extremely loud) laugh and as I mentioned one gold tooth, his eye tooth. Yeh, if you’re read my books you’ll know exactly which character is based upon his looks. He had a marked and somewhat subversive sense of humour. Indeed, humour was how he communicated with the world. He was not keen on political correctness, citing it as simply reverse prejudice but I never saw him talk down to anyone, ever. He was a strong character, with a great deal of charm and he communicated with the world through humour. He probably should have been a stand up comedian. If it had been more of a gentleman’s profession, perhaps he would have been. Despite having polar opposite political views to me on many things, I found him very easy to get on with because at his heart, what drove him was a genuine desire to be decent to people and to make the world better for everyone. 

He was sometimes, as he told me once, ‘a very bad man’ (although possibly not as bad as he thought he was) in that he had a sense of the absurd and a very satirical bent to his humour that meant anything he said about other people tended to be a little bit close to the bone. Often it would be because he came uncomfortably close to the truth – albeit a little exaggerated – in his summations of people. He didn’t suffer fools gladly and if he thought you were a fool, or didn’t like you, you’d know. Although you could often change his mind by standing up to him, especially if you used humour.

However, having painted him as a bit of a draconian scary dude, the side of him I saw was jovial, always smiling, quick witted, mercurial, constantly joking and brimming with joi de vivre. I liked him enormously because at the bottom of it all, he was simply a natural rebel, like my dad, and so am I.  

As a child he used to tell me stories about his misspent youth which my mother and father, and possibly Gran-Gran, my grandmother, may well have worried I’d try and replicate. In fact I really didn’t need any encouragement from Gin-Gin to get up to mischief although there are a number of stories which had me in awe as a youngster including one occasion when he talked about his time at Lancing College. Strangely, I had completely forgotten about this one until I read tale of something similar perpetrated at a WW2 RAF base.

The loos at Lancing in my grandfather’s day were somewhat primitive, they were fairly primitive in my day in parts of the school, but we’re talking properly primitive here. In Gin-Gin’s time the school was for boys only so most of the loos were constructed along the same model, urinals one side and then a series of stalls. The stalls were, essentially, one long bench seat with partitions and doors. Underneath the bench seat was a channel in which water was continuously running washing away any bombs as they were dropped, so to speak. This channel was boxed in, so you sat on a box, essentially, with water running beneath you. Gin-Gin went into the upstream cubicle, closest to the wall and locked the door. From his pocket he removed a paper boat then he waited until an opportune time when enough of the other cubicles were full. He gave everyone time to sit down, open their books, newspapers etc and then he set fire to the paper boat, dropped it through the hole in his cubicle and swiftly and silently exited. He listened to the irritated shouts and screams as the boat passed under each bottom in each cubicle on the way down. Then he ran away laughing.

Personally, I’ve always thought that public school is an excellent preparation should you be unfortunate enough to end up in prison at any point, be incarcerated in a lunatic asylum or be compelled to spend your twilight years in an old people’s home. I suspect that when, in later life, Gin-Gin did end up in an old people’s home, his behaviour may have been reminiscent of his behaviour at school.

In his twilight years, Gin-Gin was in a home for quite some time, a place called Pax Hill, just outside Lindfield. He didn’t enjoy it but I’m not sure he’d have enjoyed anywhere, to be honest. It was actually a lovely place, the care workers were intelligent, capable people and they were very good to him. Furthermore, some were blokes, which was important for Gin-Gin as he liked and needed male company. Gin-Gin was partially sighted and had a colostomy which he couldn’t sort out without being able to see. Otherwise, he was pretty much on the ball, whereas, unfortunately the other residents were mostly suffering from forms of dementia.

The home was in a house that had once belonged to a friend of Gin-Gin’s. He told me how it had been filled with very smart sculptures and how the house had been commandeered by the Canadian army during the war. They’d used the sculptures for target practice until a friend who knew some big wig in the British Army got a general to talk to their general and explain that the statues were all quite old, some from the Renaissance, and some genuinely ancient. Canadians were considered a bit rum by the locals throughout the area for some time afterwards! Anyway, there was a sitting room downstairs where we used to sit with Gin-Gin and in said sitting room was a budgrigar in a cage. The more mobile of the daft old ladies used to come and coo over it so it was clearly a source of great comfort. Some of them were rather syrupy about their interactions with said bugie and Gin-Gin found it all a bit toe curling. So he decided to do something about it. 

One day I was visiting him and as we sat there one of the little old dears came to talk to the bird. I’ve no idea what her name was but her husband was called Ambrose and had been a priest and she talked about him a lot, lauding his many holy, kindly and generally wonderful attributes. Gin-Gin found her a bit Holier Than Thou. Perhaps she was just high-minded in that way that believes laughter and humour are somewhat disrespectful, not to mention a bit of a waste of time; time that could be used in more weighty and serious pursuits. It’s an unfortunate fact of life that one comes across people like this occasionally, folks with no time for levity. I confess, I try to avoid them as much as possible and I advise you to do the same, but I’m digressing.

As well as not being blessed with much of a sense of humour the lady who had been married to Ambrose was the kind of person who would faint rather than laugh at a knob gag. Gin-Gin was the kind of person who would roar with laughter at a knob gag, Gin Gin liked to laugh full stop and by the time he got into the home his sense of humour was about all he had left. So I suspect the lady disliked his jokes and I suspect that Gin-Gin, knowing she disliked his jokes, was at pains to make more of them whenever she was around. Chalk and cheese, basically.

Some of the lady’s stories about the great goodness of her husband were, Gin-Gin felt, aimed squarely at him in a ‘you’re-a-bad-man-and-my-wonderful-Ambrose-wasn’t’ kind of way maybe he even felt there was a dash of ‘why-are-you-here-when-he’s-gone?’ It may well have been like that but, most likely, she just missed Ambrose and eased her sadness by talking about him. She might even have felt that Gin-Gin and Ambrose would have got on and wished they could have met one another. Who knew. But before long, Gin-Gin had nicknamed her, ‘Relic of the Sainted Ambrose’ Ambrose being her husband about whom she used to wax lyrical.  

One day, she came into the drawing room at the home and started to talk to the budgie while Gin-Gin and I were chatting. There was silence for a moment and then he whispered,

‘Listen to what the bird says.’

So we stopped talking, which, looking back on it, must have made Sainted Ambrose’s Mrs wonder if we were discussing her and must have only fuelled her distrust of my grandfather. She began to chat to the budgie in what, I have to hand it to Gin-Gin, was a pretty nauseating way.

‘Whose a sweet iddy-diddy ickle birdie then.’

That kind of thing.

Gin-Gin rolled his eyes at me. 

‘Gugger,’ said the Budgie. Gin-Gin’s face split into a huge grin and the gold tooth appeared.

‘What was that sweetie?’ asked the old dear.

‘Gugger,’ said the bird.

‘Awww, what are you trying to say sweetie?’ she asked.

‘Gugger,’ said the bird and then it whistled.

After a little more cooing and fussing, and with a daggers look at Gin-Gin, Ambrose’s wife and Relic left.

‘Come on,’ said Gin-Gin and he led me over to the budgie’s cage.

He didn’t have great sight so he felt around for the bars a bit and then gave them a gentle tap and whistled. The bird put his head on one side and whistled back.

‘Who’s a silly little bugger then?’ said Gin-Gin

‘Who’s a silly little gugger then?’ said the bird.

An enormous, mischievous smile spread across Gin-Gin’s face.

‘Bugger!’ he said.

‘Gugger,’ said the bird.

‘That’s right, you’ve nearly got it!’ He turned to me, ‘I’ve taught their bloody budgie to say bugger.’

Guffawing evilly, we returned to our seats.

Later I told Mum and Dad and they started giggling and told me a similar story.

Miss Watson, another lady in the home, the only one Gin-Gin got on well with, happened upon him in the drawing room, standing in front of the cage going, 

‘Bugger! Bugger! Come on! You, can say it! Bugger!’

Stifling her laughter, Miss Watson crept away before he’d noticed her and got the matron, because Miss Watson knew that matron would find the whole thing as funny as she did. Which was true. The matron then passed this on to Mum and Dad remarking that she was very glad the bird couldn’t handle the B sound and the other old ladies seemed to be too innocent to appreciate what it was actually saying. 

My parents and my brother and I reckoned it was a lucky choice of word since if he’d gone for fuck or sod it would probably have managed to repeat him verbatim – even ‘gollocks’ would have been less subtle. 

However, his efforts with the budgie did come back to haunt him eventually. He had also taught it to wolf whistle, something it did very well, and one day, as he sat in one of the comfy chairs, minding his own business, one of the prissier inmates came into the room and the budgie wolf whistled. To Gin-Gin’s horror she rounded on him and accused him of harassing her! Matron was called to intervene and in the end ruffled feathers were smoothed down but only when the budgie wolf whistled again, at a point when it couldn’t possibly have been Gin-Gin. But, poor old boy, his name was mud with the ladies after that, except Miss Watson, with whom he got on well. That said, he probably didn’t care that the ladies didn’t like him. From what I gathered they were a bit stuck up and I got the impression Miss Watson wasn’t that keen on them either. Certainly, she only seemed to chat to Gin-Gin and did her own thing a lot of the time, going for walks or arranging trips out with friends.

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You need to know the truth about the elephant in the room.

This is a dementia related post I’m afraid, but it’s also, kind of, a warning. As I’ve probably said before, but I’ll say it again, the reason I write the posts about my dad are because most of us have no idea what happens when a person gets Alzheimer’s. Usually, we hear that someone has been diagnosed, they tell people, you meet them around the place and they have memory problems but seem more-or-less OK otherwise, and then they disappear. The next thing that happens is that five years later, you learn they have died. I’ve never known what happened between that point when they stop going out into society and the point at which their death is announced.

Now, I am learning, so I am sharing, as I have done all along, because I hope it might help someone.

Dad tipped suddenly and completely into full on swearing, spitting, shouting lunacy last week. So much so that the dementia nurse who came to see him called in the emergency dementia team. We looked at removing him from the house at once, for respite, but they could only do 3 days and we thought he would merely return even more disorientated and crazy. Then we discussed whether we should have him sectioned and taken to a psychiatric ward somewhere. Mum vetoed that one and certainly, it seems to involve a lot of moving the person about which is not what we want. We were asked how long we could go on with him at home and I told them ten days at the absolute outside.

Obviously, he needs to be elsewhere, fast but he doesn’t realise where he is at home – he asks Mum frequently if he is supposed to know this place and it’s been his home since 1974 – so it’s not going to help him if he’s moved from pillar to post before he’s settled somewhere new. We are hoping we can get him somewhere where he will then either stay, or if it’s miles away, only be compelled to move homes once, when a place crops up somewhere nearer. All this is complicated by the fact that he’s only just run out of cash so the financial assessment hasn’t been done yet – that’s for Wednesday, while his care needs will be assessed on Tuesday.

On the upside, Dad has a urinary tract infection and now that is being treated he may well be a little easier to deal with – UTIs as they call them are well known for exacerbating the symptoms of dementia because they affect kidney function so you get all sorts of stuff building up in the system that shouldn’t be there. However, the fact is, the shouty thing we have seen this last week is where the disease will go next and ideally Dad needs to be out of his home environment and settled in a care home somewhere before that hits full time.

Worse, if we get no progress by the end of the ten day deadline (end of next week) I will have to have him sectioned because he is violent, in that he shoves people and throws things and this presents a considerable threat to someone fragile such as Mum.

There’s a very good bit in The Contented Dementia Sufferer, which has, kind of, been my bible in this process. It talks about how you spot when it’s time to put the person into a home. It explains how you turn your house into a nursing home for this person with dementia and then the moment comes when you look around you and think, ‘hang on, this is ridiculous!’

We have reached that point. Actually, we’ve reached the moment when all three of us have hit that point. My brother has probably been up for having Dad in a home pretty much from the get-go, I have been from about November last year but now Mum has come round to the idea too. He’s unable to express it but I think that even Dad is up for moving to a home. Much of his challenging behaviour could be put down to boredom. Dad is always perfectly manageable when we go out, he hardly swears and is polite and chatty to people. In a busy dementia wing, with lots of folks wandering about, I think Dad would actually thrive. The care team are agreed that he’s bored. So we’ve all reached the same conclusion. Dad needs to go into a home.

Next we have to make it happen as quickly and compassionately as possible for all parties concerned.

Now there are ways and means to homes. With Dad we have tried to strike up a relationship with a lovely home nearby. We were hoping to get him in there for a day’s care each week first so he ould get to know the staff and when the time came, the move would be seamless. But they don’t do local authority rates, which means we’d have to pay at least £500 a week and of course, now that Dad’s assets are gone, we don’t have £500 per week. I think this strategy would have worked if we’d had a better understanding of the benefits and care system since we’d have chosen from one of the homes that takes funded residents. It’s excellent if you are self-funded since that’s not an issue.

Obviously at the time we started it off, Dad was self-funding but also, I was unaware that Dad’s income and Mum’s income are seen as separate for this purpose and therefore, Mum’s assets are hers and now that Dad’s have gone he is eligible for funded care, regardless of whether or not Mum has any money of her own. Dad will have either Local Authority care or (if applicable) National Health Continuing care – although that is a bit of a lottery – but we will have him assessed for it, anyway.

So, big lesson for the future here, couples. Keep your capital investments and your bank accounts separate; his and hers. A joint account is fine, but you also need one each of your own. And if you are looking after a brace of parents and only one of them is ill, it’s the ill one’s cash that is being assessed here, not the well one. Plus, if the well person owns a house with the ill person, it cannot be sold to fund care while either of them is living there. In other aspects, the rules of engagement seem to differ from local authority to local authority. There are check factors for NHS continuing care and certainly Dad’s symptoms would fit those, but he has Alzheimer’s so it’s not always a given, even if, legally, it is supposed to be.

Modern medicine being what it is, Dad has lasted a very long time. He was diagnosed with Alzheimer’s just over 5 years ago but has been experiencing cognitive and memory difficulties since 2004. By 2010 Dad was unable to read a full length novel. By 2014/15 he was unable to read at all. He has needed live-in care since 2016 – actually he needed it well before that but Mum did it all herself, refusing, point blank, to accept any but the smallest amount of help until 2016; March, to be precise, which was the point at which her health finally broke down and she ended up in hospital. We had seen it coming at Christmas and so we had been working with the local ladies who came in during the day to sit with Dad while she went out into the garden. We’d been trying to get a 24 hour rota together. We came close but couldn’t cover weekends.

Obviously, when Mum ended up in hospital, neither my brother nor I was available to sleep with my Dad for more than a week so we got live-in care then, against my mother’s wishes, initially, but she did come round eventually.

Dad is still going strong, even if his mind isn’t and I could see him being hale and hearty, if totally batty, in three, four or even five years’ time. The pace his Alzheimer’s is going, if it is the disease that kills him rather than time, nature, or something else, he has a good eight or nine years of twilight to come, minimum.  Even if he’d been a millionaire, his cash wouldn’t have lasted long enough to see him through. As it is, Dad wasn’t a millionaire, far from it, but his life-time accrued assets have amounted to three years of live-in care, with extra night cover, a fair few extra hours during the day and so on.

One of the things about self-funding is that many homes will need you to be able to guarantee residency of two years from the funds you have. Obviously if the person dies, it’s different, or if they ask you to remove the person. But it’s worth thinking about if you’re looking at a home. If you have say, three or four years’ worth of funds for care, I’d think hard about making sure you find a home that will accept local authority or NHS funded places. You and your loved one with dementia may well hope that they will die long before it gets to the point where they need the home. It’s true, they might, but you can’t bank on that. You have to plan for them being like my poor dad and having to endure every single last horrific minute of Alzheimer’s as they grind their way on to a slow, tortuous and frankly horrific end.

To that end, it’s worth finding a home that will provide respite care or do some kind of day care/club so you can get the person with dementia going there regularly and get them used to it. Either they have to agree to go into a home while they are lucid and able, and get to know the place first, or you have to make up an elaborate ruse as to why they are going. In Dad’s case, one of the carers came up with a totally inspired one that he was going to a social club where there were a lot of very bored people who needed someone to talk to. Dad is basically well-meaning and was only too happy to oblige, chatting, turning on the charm and generally being very well behaved.

Mum promised Dad that she wouldn’t put him in a home and as a result neither of them thought to pick one out one just in case. To be honest, Mum and Dad have always assumed they will die before the time when many of these tricky decisions have to be made. Now that Dad isn’t really cognitively able, Mum has done her absolute best to honour the promise she made. However, neither she, nor Dad had any clue of the horrors they were to endure. Let me elucidate.

Your Alzheimer’s suffering loved one will gradually regress. First they will lose their memory, forget things, then they will start to lose their understanding of social skills, they might swear, say inappropriate things, especially sexually inappropriate things and like small children, will ask people to marry them. As an example, some of the choice phrases I have overheard.

‘Have you ever been fucked up the cunt by a man?’ to a nine year old who countered,

‘Pops, I know what those words mean, but you really shouldn’t be saying them in front of me.’

Inappropriate sexual suggestions may be made to said nine year old.

Alternatively, your patient will shout,

‘Fucking hell you’re fat!’ at people who have come to help them.  They may spit at them, throw things and tell people to, ‘fuck off out of my house! You fucking awful fucking woman.’

On other occasions, while trying to actually be helpful, they may tip their food on the floor. They will think that scraping the leavings off their plate onto the carpet at their feet is helpful because they will have completely forgotten about the middle bit where they take the plate to the kitchen and scrape the leavings into the bin. As they realise it gets a result, they may relearn that it’s wrong but continue to do it to get a reaction.

Tiny things will cause them to completely lose their biscuits. You have no idea how bizarre it is watching an eighty six year old man throw himself to the floor and lie there kicking and screaming because he doesn’t want to get dressed, in the exact same manner as a very spoiled and unpleasant two year old having a trantarum. Except, of course, you can’t just pick up fourteen stones of eighty six year old and carry him off under one arm. It’s fucking surreal, I can tell you. You can’t reason with them the way you can reason with a two year old either, they lack the cognitive capacity.

The Alzheimer’s patent in your life will do completely odd things like decide they hate their walking frame and pick it up and throw it across the room as soon as they sit down. If it happens to hit the sufferer’s frail and elderly wife, things could get pretty grim. Thank god Dad can’t walk about, he’d probably have fucking murdered someone! But seriously, an aside on that, one woman did get attacked by her father who had forgotten who she was and thought she was a robber. He was chasing her around the house with a kitchen knife when she texted his neighbour asking for help. The neighbour came and knocked on the door. Her father stopped the chase to answer the door and explained he was looking for a burglar who was in his house. Meanwhile his daughter slipped out of the back door, climbed to safety over the garden fence and into her neighbour’s house, through the back door, which he’d left open.

Other things Dad has started doing, he chucks stuff. His chair was next to his record collection but after an afternoon where he sent the records spinning across the room at Mum and the Carer, Odd-Job style, these have been removed. He tears up and throws books. He spits at people. He clears his throat, leans forward and spits on the floor (we have Lino in our drawing room now).  He asks for tea and then tips it onto the floor. This means he can’t have his water cup near him, either. If he wants water, he will ask.

‘Will someone kindly get me a drink of water?’

Unfortunately, he has no sense of time passing so if the cup is not in his hand before the question has left his lips, sometimes before he has even finished the thought, he will believe he has been sitting, thirsty, for hours and he will ask again, more forcefully this time.

‘I said will somebody kindly get me a fucking drink of water.’

Say, heaven forefend, he has thrown his sippy cup at someone earlier, or lobbed it away at some point and it takes a little time to find, or its landed on its side and it’s empty, the Carer may well say.

‘Oh dear, it’s empty, wait a minute and I will get you some more.’

While she is walking to the kitchen, filling the cup and bringing it back, Dad will think he has spent many hours neglected, waiting for his water and will have worked himself into an apoplectic state of rage.

‘I hate you fuck off! You fucking horrible fucking woman!’ he will be shouting. ‘I want. A glass. Of fucking. Water! Is that too much to ask? Get me some fucking water you fucking horrible people. I hate you! You fucking stupid bloody woman!’ And so on.

As a Carer, you need to time your return since if he is too angry, he will spit at you and try to push you away, or throw something at you; this may include, a vase, place mat, handkerchief, glasses or even in one memorable instance, a clock.

This is absolutely standard for Alzheimer’s patients. A few escape but it’s only a tiny handful. It’s best to assume that your kindly gentle loved one will go thought the violent, paranoid shouty phase with as much energy and conviction as everyone else. And when you hear stories of Alzheimer’s affecting people like this, it is never accentuated as the norm. Nobody ever dares mention the elephant in the room and if you’re a blind knob, like me, you miss it.

Obviously, you don’t want your loved one to be at home when this phase of the disease hits especially if their spouse is still alive. Timing it is very difficult, though. Clearly, you want your person with you while you can appreciate every last tiny flickering spark of who they were and still have them happily ensconced in a home before they reach the point where they have transmogrified into a rather less amusing and a lot more dangerous version of Father Jack.

But there may be a waiting list for the home you like and the patient’s name might not have reached the top yet. Furthermore, you may well feel that you don’t want to peak too soon so a spot may come up while they are still perfectly manageable at home and then, suddenly, days after you’ve turned it down, you will wake up and find your hitherto placid – if forgetful – loved one has turned into a spitty, screaming rage ball.

If that happens, the most important thing for you to take away is, it’s not your fault or theirs, but it has happened and now that it has, something must be done, at once.

Ideally, you will have picked the home together way before that, and the patient will move in while still cognitively able to think altruistically about their loved ones. But ideal and real life are so different aren’t they? My parents did not do this. Neither of them expected years of twilight lingering, they expected to snuff it quickly, but twilight lingering is clearly their lot. If in ten year’s time I am still writing posts about Dad’s latest antics, I will not be remotely surprised. The way I feel right now, I wouldn’t turn a hair if he outlasted me. But my point is this, I think my parents had absolutely no idea what they were walking into and I think if he’d had the slightest clue what the shouty stage entailed Dad would have been a lot less intransigent about dying at home and Mum about letting him. In fact, Dad would have probably booked the home and moved in, himself.

Even so, it’s impossible to get the timing right, there will never be an instant place the moment the need arises. You will either be incarcerating your loved on a bit before they are ready or a bit after. Or the downturn will be extremely sudden and you’ll be having them sectioned.

It may be that when someone is diagnosed with Alzheimer’s there is all sorts of support that helps walk them through these decisions, helps them and their family to prepare for the point when the person becomes mute and the only thing that speaks is the disease. Because however distressing and horrible it is, you need to see that, need to be aware that it lies ahead for everyone.

But although Dad was diagnosed in 2012, nobody actually bothered to tell Mum or him until 2017. By that time, his memory capacity had fallen from 80% to 40% and my brother was already pressing for Mum to put him in a home – my brother’s wife was a care worker for a time so maybe they knew more about the screaming, spitty anger ball phase looming ahead of us than we did. I mean, we all knew Dad would go nuts but there’s nuts and … NUTS.

Even so, it was only in 2018 that Dad’s personality began to really change. Suddenly, he became a little more child like, a bit spoiled, had to be the centre of everything but even that was bearable, although I started thinking about respite care for him and because I didn’t have the right knowledge about how Dad’s care would be funded I was nervously husbanding our resources, knowing that there was only a year and a half of care left when we went over to Mum’s assets, or about six months if Mum was at home with carers and Dad was in a home. As it is, Mum’s funds will see her for about three years if it’s just her care (much less required than for the two of them) or if Dad is funded.

People talk to you about ‘nursing care’ and you don’t really know what it means, you think it’s continence or ability to walk and dress, or maybe waking up in the night a lot and not knowing what time it is. Nobody points out that what ‘nursing care’ is really for is that bit between the not-being-able-to-remember-things stage, and living-corpse-open-mouthed-gaping, end-game. Neither does anyone point out that during that bit, your relative with dementia is going to go completely, fucking bat-shit crazy.

I’m talking about The fucking Shining.

That’s why I’m telling you now.

Because you need to be prepared.

You will not find your loved one in crazy.

There’s no reasoning with crazy.

There’s no living with crazy.

By all means try and keep your loved one at home for as long as is humanly possible, but don’t be fooled by the vaguaries and pussy footling about from people who are too British and awkward to tell you the truth.

When someone says that your relative with dementia is going to need nursing care and need to go in a home, what they are telling you is that your loved one is highly likely to go absolutely, completely, fucking off their rocker. So much so that, if you’re at home at the time, they might kill you.

If you’ve followed my posts about dementia,  you’ll know that I have learned this via a somewhat circuitous route. Now, I’m telling you, so you don’t have to.

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More bad parenting.

Remember my post last week about my epic parenting skills well here is another instalment. I was going to tell you one from many moons ago but I don’t want you to feel you need to be sympathetic, I just want to raise a chuckle, and also, there’s a second instalment of last week’s debacle which you might enjoy. I’m afraid it’s not as funny but it’s the kind of thing that happens on a normal non-eventful day in our lives so it will give you the idea of the kind of life I lead.

This week I finally managed to go to the talk McMini and I enthusiastically tried to attend somewhat prematurely last week. Here’s how it went.

McMini is able to stay at home this time with McOther though, as in a rare moment of normal person working hours, he is home by six. Woot.

However, nothing is that simple and shortly before leaving I am faced with a new challenge. McMini explains that while at school that day, he took his watch off to do some painting and that when he came to put it back on again, ‘it wasn’t there’.

He’s McMini, he’ll have left it somewhere precarious it and it will have fallen onto the floor.

‘My teachers are going to have a really good look for it tonight,’ he tells me.

McMini is McMini. He is not one of the normals – CF this picture (left) – although he’s slightly better at pretending than I am. Also, he has time keeping skills like mine, as in negligible. This inconveniences him when he wants to watch his favourite TV programme, the Simpsons, which he loves, because he keeps losing track of time and missing the start. To combat this singular source of annoyance, he has set an alarm on his watch to go off at the time the Simpsons begins; six pm.

Cue 1950s Technicolor miraculous moment Oooo-aaa-aaah music.

Yes! I realise that if the watch is somewhere non-standard, which it will be because this is McMini, the caretaker or teachers may well have difficulty finding it. But should that happen, all they need to do is stand in the room where he lost it at around six o’clock, wait for it to start beeping and home in. It also goes off five minutes afterwards so even if they don’t quite manage to find it the first time, hang around for five minutes and they’ll get a second shot when it goes off again.

Following this blinding revelation comes another one – I know, two in one night! Steady on – but I realise that I’m about to go up to the school and actually be there at six pm. I reckon I can find McMini’s watch if I can persuade them to let me stand in the classroom for a minute or two. Excellent, the watch may have disappeared but I have a very real shot at finding it.

When I arrive at the school I discover there are two events going on and one of the ladies from the office is doing a meet and greet, pointing people in the right direction for each one. She steps forward the minute I appear and says,

‘Oh Mrs McGuire, about McMini’s watch, his teacher thinks it might be in his drawer. They all put their watches in their drawers before PE.’

‘Ah, I think McMini put his on again and took it off for art,’ I explain and then I tell her about the alarm that’s going to go beep at six and ask if I can go and stand in the classroom.

‘I can go and have a look for it if you like? If you don’t mind waiting here …’

‘Not at all,’ I say, ‘shall I carry on letting people in?’

‘If you could.’

So off she goes. I do what she’s been doing, press the button to let people through the airlock and tell them that the year two meeting is in bumblebee class and that year six parents are to go to the main hall.

Time ticks on. I say hello to various friends going into the hall for the meeting I’m supposed to be attending. Finally, when things are looking a bit worryingly quiet, the lady comes back.

‘You’re right,’ she says, ‘It wasn’t in his drawer but then I heard it beeping like you said, so I followed the noise and found it.’

‘Bonanza!’ I say, ‘Thank you.’

I take the watch and scuttle swiftly in the direction of the hall.

Obviously, I am last in, but to my complete amazement, the meeting hasn’t started yet. McMini’s class teacher rushes up to me to reassure me that all hands are to the pump in the search for the watch and I am delighted to be able to break the good news to her; that we’ve found it and I explain how.

‘That’s genius!’ she says, and appears to really mean it, bless her.

We exchange a few more brief pleasantries and I walk to the front and sit next to a friend.

All goes well until, a few minutes into the talk, there is an insistent beeping from somewhere. The speaker stops. As the beeping gets louder, and faster, people shift uncomfortably and rummage in their bags for their phones to check it isn’t them. That’s when I realise the noise is coming from my arm. The lovely lady who found McMini’s watch heard the alarm and used the sound to locate it, but it seems she didn’t get there in time to switch it off. That means the five minute snooze period is up and it’s going off a second time.

Luckily no-one really minded.

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Trust me, I’m an expert … mwahahahaahrgh!

As you are all aware, because heaven knows I bang on about it enough, I lead a very busy life and because the tolerances for error are quite small, I sometimes make a comprehensive fuck up of things. Quite a lot of the time, to be honest. One of my specialities on this front is turning up at the wrong place at the wrong time. It’s the latest instance of this which I’d like to share with you now. It happened like this …

McMini and I are sitting at home relaxing after he’s come home from school when I open an email from the school. It is a new layout, and it starts like this.

Thursday 8th January,

SATS evening for parents.

Dear Parents/Carers

On Thursday 17th January at 6pm, we will be holding an information event …

PFC – pretty fucking clear – right? Er, no. Not to muggins here. I have seen the date at the top, Thursday which is tonight, and the title, SATS evening for parents, and so I ignore the body of the letter, because I’m far too fucking busy to read that, and merely scan for the start time, ah yes, 6.00pm.

I look at my watch.

‘Shit it’s five o’clock!’

‘What’s up Mum?’ says a cheery voice from the other room.

‘The school is doing a thing about your SATS and it’s tonight, at six pm.’

‘Oh what? Do we have to go?’

‘Afraid so, it’s really important.’

McMini appears in the hall all rolling eyes and sighs, ‘Won’t Dad be back in time for me to stay here?’

‘Not at six, no, sorry.’

‘Oh well, I have some charge on my iPad, can I bring that?’

‘Yes, and your reading homework, you can write your book report while your’re there.’

He’s leaning over my arm, reading the email on my phone.

‘Hang on Mum, it says kids aren’t allowed.’

‘No it says it’s not for you, I can still bring you along if I’ve nowhere else to put you, they just mean that I don’t have to bring you if there’s someone you can stay with at home.’

So we get ready but we take too long so we have to go in the car because there isn’t time to walk. When I get up there, we are, parking, and of course it’s one of those ones where it goes wrong. You know how, when you’re in a hurry, you always get the angle wrong and have to come back out and start again. Off we go, second time, reverse, turn, turn, turn, ‘MEEEEEEEEEEEEEEEP!’

‘Shit.’

The arrow is actually pointing to the place where I’d put the firing button for the machine guns I will be placing behind the lights at some stage. Except now I’m thinking that if I’ll be inadvertently spraying the streets with fire every time I parallel park it might not be such a good idea. You can see the little trumpet where the hooter button is to the right of the arrow. There’s one of those each side so I have double the opportunities to beep in error like a fucktard.

I used to have a car with a hooter in the centre of the steering wheel and I beeped it with my elbow every time I reversed. This car has two hooter switches, one each side. Someone does something stupid on the motorway, nearly killing us all and can I find the hooter? Can I buffalo? But I still manage to beep the fucking thing by mistake every. Sodding. Time. I. Park! Maybe when I’m next in a dangerous situation, I should try not to hoot, then I might chuffing manage it.

McMini puts on an expression of mock shock at me for swearing and in his best Walter from Dennis the Menace voice he says,

‘Mother I’ve told you about swearing in front of me, you’re setting a very bad example.’

‘I know, I’m a terrible mother,’ I reply, giggling because I know he’s only taking the piss.

‘There’s an old man in that house staring out of the window at us, he’s looking very disapproving.’

‘I expect he is. I’m making a right pig’s ear of this parking.’

‘It’s not the parking, I don’t think he liked you hooting.’

‘I don’t blame him. I didn’t either. Right,’ I haul the handbrake on. ‘Come on, let’s go.’

Immediately a stream of cars comes up the street so we have to wait for them to pass before McMini can get out.

‘It’s the Truman Show!’ he says cheerfully. ‘They’ve been waiting ages to drive up here at the moment it would be most annoying for you.’

I heartily agree. My whole life’s the fucking Truman Show in that respect,

We arrive at the school as the clock on the church two streets over strikes six. Woot. Not exactly timely but we won’t have to do the walk of shame to the only seats left (at the front). Well, no, that’s not true. We will have to do the walk of shame but at least we won’t be doing it after the talk has started. I push the button to open the door but there’s no-one to buzz us through the air-lock or whatever they call the next bit.

‘Strange.’

Just then, two teachers appear and they come out and ask us if they can help. We say why we are there and they buzz us in.

‘Are you sure it’s tonight?’ asks one.

I’m not as it happens. I meant to check the email before leaving. ‘I thought it was,’ I say weakly.

‘The light’s aren’t on and there’s no-one else in the hall,’ says the other.

‘Uh … right,’ I say.

‘I’ll go and ask Mr Hammond,’ (the headmaster) ‘he’s still in his office,’ says the first one and she runs off up the stairs.

I have an Ely. That is, according to The Meaning of Liff, the first tiniest inkling that something has gone horribly wrong.

‘Hmm … I’m a bit of a spanner with dates, I may have stuffed up,’ I tell the other teacher as we wait. ‘Hang on, I’ll check the email.’

I get the email open and see that I have, indeed, misread it.

‘Shit,’ I say before I can stop myself. ‘Sorry,’ I start laughing, because cheery apology seems the best way to play it, ‘Will you look at that? I’m such a bell-end, I’ve got the wrong day.’ I remember that the other teacher has gone to get the headmaster. ‘Oh no I’m so sorry, and now I’ve woken the Kraken and everything!’ I say as I turn and realise Mr Hammond and the other teacher have just arrived and heard everything, including the bit where I refer to the act of fetching him from his office as ‘waking the Kraken’.

He looks knackered and I apologise for dragging him away from his work. The three of them are all extremely good natured and up beat about it, I’d have told me to fuck off! and we laugh and apologise cheerily and McMini and I go away marvelling, in a slightly giggly way, at my complete ineptitude. As I get into the car. McMini says,

‘Mother you swore in front of the teachers, you said ‘shit’ and you called yourself a bell-end in front of Mr Hammond.’

‘Oh dear, did I?’

‘Yes you did! You know in early years, when I said bollocks and I got told off and they asked me where I got it from and I said ‘my mum’ and they didn’t’ believe me?’ he says, reminding me of yet another example of exemplary parenting from my past.

‘Yes I do,’ I reply.

‘Well they know I wasn’t lying now! Because they’ve heard you swearing, so they know it was you and they know you’re a foul-mouthed shrek-lady. They’ve got … what is it when you have loads of evidence?’

‘Hard evidence?’

‘No.’

‘Cast iron proof?’

‘No.’

‘They’ve got me bang to rights?’

‘That’s the one! They now have you bang to rights because they have concrete evidence that you swear in front of me and not just in front of me but in front of the headmaster! They know you are a very bad mother.’

We start laughing about this but I do manage to leave the parking space without beeping the chuffing hooter again and the Disapproving Man has gone from the window so I thank the lord for small mercies.

‘I am a bad mother, but, at the same time, I must be doing something right if I have such a good, well mannered little boy.’ Obviously, I say this in a really syrupy voice, like the Walter the Softee one he does when he calls me ‘mother’.

‘True mother, despite your somewhat idiosyncratic parenting you really have produced a most charming and well behaved child.’

‘Exactly, you hear and see me behaving extremely badly but you don’t, that has to count for something,’ I say. ‘Although, they’ll be wondering back there, won’t they?’

‘Yes, they’ll be saying to each other, “how could such an evil crone produce such a perfect little boy?”’

‘Indeed. Why is he not affected by that potty-mouthed harridan he calls his mother? Mr Hammond has probably had to go and have a lie down.’

‘I bet he does an assembly about it tomorrow, he’ll say McMini is a lovely charming little boy despite the fact his mother is a horrific, sweary, shrek-like crone!’

‘That’s right, he’ll say I’m dirty! A dirty, filthy, vile, morally-dissolute, harridan!’

‘And a shrek!’

‘And a shrek.’

We spend the journey home coming up with more and more colourful adjectives for fictional Mr Hammond to use in assembly while describing my dreadfulness, and shouting them at a higher and higher volume, as if his fictional disapproval is moving from strongly-voiced, through angry to apoplectic.  The incongruity of this, when placed against the actual, real Mr Hammond, who is is the most calm, measured and even-tempered person you could care to meet, is a source of childish amusement to both of us.

We continue randomly shouting pejorative adjectives at one another for several days.

I really should be setting an example.

Yeh but …

Oh well, you can’t win ’em all.

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Feels like Friday!

Shall I let you into a secret? This is my favourite time of the year. Especially Epiphany (next Sunday).

Don’t panic! It’s 2019.

Why? Because I get to look back at what I’ve achieved in a good year, and on to what I might achieve – I might do a bit more looking forward than back if I’ve had a bad year but that’s the loveliness of it. It’s only the beginning of the year so there’s that glorious, clean-page feeling you can only possibly enjoy during the few, early weeks have when you haven’t fucked anything up yet.

Then there’s the fact the days are getting longer, the bulbs are beginning to peep through, the birds are suddenly singing a LOT louder. There is a buzz and energy to everything, as if nature knows that no matter how cold it might yet get and no matter how mid winter it actually still is, we have turned the corner. It’s a kind of school’s out feeling.

The big one, of course, is that Christmas is over, I am no longer writing lists, trying to remember all the things I am supposed to do, or trying to work out if I’ve posted the Christmas cards or remembered to buy more stamps. There’s no travel, no wondering, nervously, if I’ve booked the cat in kennels on the right dates even though I know I’ve checked and re-checked. There’s no packing or making sure that lots of things are clean so I can just put one suitcase down in the hall and pick up the other one as we make a quick 24 hour pit stop at home on the way from Scotland to Sussex, or vice versa.

There’s none of the omnipresent worry, the feeling I’ve forgotten something. Nor, indeed, the very real danger of causing horrific offence though some gifting oversight or greetings-related vaguary. No trying to recall if I’ve sent that calendar to Aunt Ada, and if I have, whether Aunt Doris should have one too, or whether I put a family letter in Cousin Mabel’s card. Or have I sent the right cards to the right halves of the divorcees? I did catch myself in time before I posted a card to the lady half of a divorced couple in the envelope addressed to her ex. That was close.

There’s no fielding all the calls from people who want to know how Mum and Dad are but are too shy to call direct, ‘because we know your father’s ill and we haven’t heard anything’. No more trying to explain to them that they haven’t heard anything because my father is ill, not because my mother doesn’t want to call for another year. No more efforts to try and underline, gently, that Mum would love to hear from them but that she has a dash of dementia too, now, and that they haven’t heard because they need to call her.

Doing Christmas and New Year is like sitting a rather onorous set of exams.  It’s alright if you are prepared but I am not always prepared because … life.

Christmas and New Year require me to be a grown up, be the matriarch and generally do adulting, hard.

Adulting is not something I do well.

Epiphany, on the other hand, is when I come out the other end, exams sat, adulting done, no clue as to the results but nothing more than the thank you letters to worry about, which are usually done by that time because even if they feel like pulling teeth, they’re the last push, the the last bit of grown-up-ness between me and freedom, and it always feels good to get them finished by the first weekend in January so I can relax.

There is the glorious revelling in the knowledge that Next Christmas and New Year are about as far away as it is possible for them to be. That smug feeling you get buying next year’s wrapping paper and Christmas cards for a third of the price in the sales and putting them away. There’s the fabulous relief that all the weird people who love Christmas and bang on about it from about July will actually shut the fuck up about it for a couple of months. No more Christmas jumper pictures on Facebook. Woot. But I suppose, most importantly, after a month or two of frenetic planning and pretending to be a grown up, Epiphany brings a bit of space, some time to reflect on the past year and look at what I have – or haven’t – done. And with that, usually, comes a feeling of great peace.

Next year is going to be tough but we’ll get through somewhow.

This year, I have learned that I need to write to maintain my sanity. More importantly, as well as learning that I needed to do that, I learned how to. I have not been so calm for a long time – don’t get excited it’s all relative, I’m still bouncing about like a kernel in a popcorn maker and I am still exasperated by trivial and mundane things. I still get menopausally, hormonally, mental baggage-ly angry about ridiculously small stuff and end up shouting at strangers but … er hem … in a more relaxed and benign way. Phnark.

So yeh. Very little has changed, except the gargantuan word total, there just seems to have been this weird shift in the way I look at it. It’s not all roses, but it’s not all stingy nettles and jaggy brambles anymore, either!

I am aware that my feeling of peace is probably nothing more than the calm before the storm but I’ll enjoy it while it’s here. As for 2019, I know some things are going to be grim, but I’m still looking forward to it, I’m still hopeful and still intrigued as to what it will bring.

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Ch-Ch-Ch-Ch-Changes, the topic NO-ONE wants to talk about.

You know how it is, pretending to be normal, day after day, is exhausting and after three or four weeks where I was feeling surprisingly mentally switched on, the fog descended again this week. I had McMini off school on Monday which meant that, on some subliminal level, I managed to think it was Sunday and therefore spent Tuesday firmly convinced that it was now Monday, with interesting results. This brain fog is an entirely normal part of my monthly cycle but I’ve reached a point in life where my hormones are exacerbating it.

You may not know this, although you could well have guessed from all the effing and blinding and impotent anger on here – impotent but funny, I hope – but I am at that age when my periods are stopping, or preparing to stop or possibly finished already, I don’t know.

Amazingly, it’s not something people talk about that much. Well … I do, but I realise I’ve never really posted about it on here. I think I ought to. The bit where your periods stop is a part of your life that is probably different for every single woman but maybe if I share my own experience it’ll help someone, somewhere to know that they’re not a freak, and certainly not alone. If you, or any of your friends have reached that stage, hopefully sharing my thoughts will be of practical use. So here is your guide.

What is it, this menopause thing?

Well, what most women refer to as ‘the menopause’ actually happens in two parts. There’s the menopause, which is the actual moment your periods stop. A few years after you will still be enjoying – although that isn’t really the right word – the hormonal aftershocks. I’m not sure what they call this bit. Post menopause I suppose. Then there is the perimenopause which is the time leading up to the point when your periods stop when your body has clocked that the eggs are running out and is quietly, or not so quietly, shutting up the fertility shop.

OK so if it’s not the menopause, what do I call it?

The change.

Fine, so I know, in your Mum’s day, everyone called it the menopause but these days you’re not allowed to do that. When I say ‘the change’ I feel a bit giggly and old fashioned. I want to mouth it soundlessly, yet theatrically, possibly with a knowing expression and one finger pointing downwards, the way Les Dawson might in a Sissy and Ada sketch when they’re talking about ‘downstairs’ problems (snortle).

Seriously, though, avoid calling this time in your life ‘the menopause’ at all costs unless you’re absolutely sure your periods have stopped. Many people I’ve met use the word ‘menopause’ as a blanket term to describe the phase where they are experiencing symptoms, which are uniformly vile both before and after your periods finish. Don’t do this. For every person who knows exactly what you mean, there is another who also knows exactly what you mean but will still feel it their duty to explain to you that you are incorrect in your use of terminology. You will have to pretend this is news to you, or risk flaunting your sloppy and inaccurate use of language and eliciting another ear bashing for your shoddy lazy thinking and general wrongness as a human being.

Naturally, perimenopausal/menopausal as your anger levels are, this will annoy you extensively. Indeed, there is a real danger you might actually lamp one of these well meaning pedants if you let this scenario happen too often. So don’t. Call it the change.

Moving on.

What are the symptoms?

Try as I might I haven’t been able to verify this but as I’m sure I read somewhere that there are something like 98 different symptoms that can present themselves. Common ones, or at least, the ones the NHS list, are – and I quote:

  • hot flushes – short, sudden feelings of heat, usually in the face, neck and chest, which can make your skin red and sweaty
  • night sweats – hot flushes that occur at night
  • difficulty sleeping – this may make you feel tired and irritable during the day – especially if you have the problems with memory and concentration listed, below, because it’s frustrating as hell. Try remembering to make school packed lunches, to pack the swimming things in the school bag on the right day or turn up to a dental appointment when you are supposed to, when you can’t find your arse in the dark with both hands and need cue cards to remember your own fucking name!
  • a reduced sex drive (libido)
  • problems with memory and concentration
  • vaginal dryness and pain, during sex or, generally, itching and discomfort
  • headaches
  • mood changes, such as low mood or anxiety
  • palpitations – heartbeats that suddenly become more noticeable
  • joint stiffness, aches and pains
  • reduced muscle mass
  • recurrent urinary tract infections (UTIs)
  • in some instances, it can cause a recurrence of post/anti natal depression

How long is it going to last, Doctor?

Hmm, well the symptoms can start up to ten years before your periods actually stop and they usually go on for about four years afterwards, but one in ten women is lucky enough to have them go on for twelve years. Oh joy. I can attest to this, one of the ladies at my gym is in her 70s and still gets hot flushes. Sometimes, hot flushes are called hot flashes but we still call it looking flushed when we go red so unless you’re a bit Victorian about using the word flush because you think it’s something not quite nice a lavatory does (mwahahahargh!) or American – because they probably do talk about looking flashed rather than looking flushed let me know my lovely US readers – I can’t really see the point.

Yeh but how long is it going to take for me? How many years?

Ah yes, well, you see, there’s the thing, this is hormones. No-one has a fucking clue because the driving factor is your hormones and only they know and they’re cagey little bastards. Each woman’s body has its own, unique and joyous interpretation of how the business of ceasing to ovulate is achieved. For the record, the health professionals treating me reckon I went into an early one after having McMini aged 40. I’m now 50 and neither my periods, such as they are, nor the symptoms show any signs of stopping.

How do I know when it’s starting, then?

Some women start getting hot flushes, which is a big indicator. I haven’t really. However, I was first officially diagnosed as perimenopausal at the age of 45 when they thought I had been for five years, already. Nothing seemed to have settled down after McMini. My cycle was weird and I was getting constant headaches, the kind of nutbar hormonal activity that was giving me the spins, period pains that made the bout of appendicitis I had once look like a walk in the park and a temper that was … short. They reckoned I’d gone into it early  having waited until I was 40 to have McMini. I had a marina coil put in – this has nothing to do with Morris cars and does not mean I go faster but it did put paid to the headaches and stomach cramps every time I had what Viz magazine euphemistically calls, ‘the painters in’.

The folks who inserted my first coil reckoned I’d have finished my periods by the time the hormones wore out, when I was aged 50.

They were wrong.

Aged about 49 I went to the doctor because I’d had sore boobs – yes that’s another lovely symptom – for three months and thought I ought to get that checked. I also wanted to discuss what appeared to be early onset dementia. We did the boobs first and she asked a whole raft of questions finishing up with,

’I’m pretty sure I know what’s wrong but I just have one more question, are you having problems with your short term memory?’

I said that was the other thing I was there to see her about and she said that it was entirely hormonally induced which was kind of good and kind of not as in, I’m not going mad but I’m not going to get any better.

Am I peri or post menopausal? Well, ladies, the point of a coil is to limit or stop your periods, so unfortunately, I haven’t a blind clue. I have had one hot flush but that’s all. Contrary to popular opinion, not everyone does get hot flushes, one lady at the gym I spoke to never had any at all. If you don’t have them, try to ignore the people who say you can’t possibly be having the change if you haven’t had a hot flush. They’re talking through their arses.

Is there a cure?

Most judgements about, treatments of and general related aspects to the change are based on scientific fact but their application definitely appears to be more of an art than a science. Also, clearly, the symptoms you are experiencing make a difference to the treatments you can have and they are different from woman to woman. Here are few options, anyway.

HRT

You can have hormone replacement theory, usually, but not always, involving a pill with a tiny dose of progesterone and an eostragen gel which you rub on.

Originally, HRT merely put off the inevitable, hence my choice of a coil over HRT, so the eggs go on disappearing. The last thing I wanted was to come off HRT after five years only to have the whole bloody hormone circus back in town. HRT these days is getting to smaller doses at less risk so it’s not beyond the realms that you can just take it forever. My beef with that would be periods. NO WAY am I voluntarily going back to having periods in any way shape or form. On the up side, you’re not going to end up with brittle bones which can happen over the course of the change.

Some think that the risks of HRT are too great, there is a small risk of increasing your chances of getting breast cancer but it’s much smaller than the increased risk of getting breast cancer you’ll have if you drink too much or get fat.  It also means your cardio vascular system will remain in much better shape and you won’t have to worry about the brittle bone thing.

CBT

Yep you read that correctly, cognitive behavioural therapy. Addressing the anxiety about whether or not an embarrassingly hot flush will appear at a bad time has a sizeable impact on the number of hot flushes a woman has, linking them to stress. Obviously, this also works well for women who are suffering from totally irrational anxiety – another jolly symptom of the change. A friend told me, recently, that her first inkling that she was having the change was when she sought treatment for what she thought was a nervous breakdown. Yes hormones can really mess with your head.

On the hot flush front, the chemical that causes them has also been identified and a drug tested that blocks the effects of this chemical. It has worked extremely well in trials and is now creeping through the safety checks and validation process – it should be available in a few years.

Diet and gut health

What you eat can help a bit. There are various foods that can help balance hormone deficit, mainly things like oily fish, nuts and seeds, the omega things basically. I also take vitamin B12 and have for years, along with evening primrose oil which seem to take the edge off my PMT (or PMS if you’re in the US) and cranberry capsules which keep the cystitis down to a minimum. Much of this, in my case, is about feeling that I’m doing something to try and control my symptoms. It makes me fee less like a piece of driftwood tossed on a stormy sea and more like … well, if not a boat then at least, a life raft with some rudimentary form of steering and a vague notion where land is. Although, that said, whether or not it’s a victory of belief over science, it’s amazing what a can of sardines can do to get rid of the headaches I get at certain times of the month.

Yeast …

If you are suffering from the brain fog side of things, then, bizarrely, the balance of your gut flora and fauna can make a difference. Apparently 70% of your serotonin is produced in the gut. I am a great believer in trying anything once so when a friend said she had some Kefir grains going for a good home I went and collected some. Kefir can be grown in water or whole milk. It is a yeast which feeds on the water/milk and ferments it – the water has to have sugar and stuff in. Essentially, what this means is that you are drinking yeast shit. Try not to think about that. Like spreading manure on the fields, yeast shit in the guts does wonders and-

I should stop this here really shouldn’t I?

Anyway …

Bob the Blob

He looks like adenoidsMy personal stash of Kefir grains are collectively called Bob the Blob and they are the whole milk kind. Bob in his naked state looks like adenoids, under the milk he looks like something out of Dr Who – the Brain of Morbious springs to mind. He lives in a jar in a dark cuboard in our kitchen. Bob is like that thing out of one fish two fish red fish blue fish, he will grow and grow so you can give bits of Bob to your similarly post/perimenopausally challenged friends. I wouldn’t sell his … producings …  as yeast shit though or they might not want it.

Bob’s home made stuff is an acquired taste, it’s a bit like drinking feta cheese. To be honest – the water kefir is made with lemon and sugar and is much tastier – but Bob definitely cuts down on the brain fog and certainly on the length of time each monthly fog bout lasts.

Cutting down stress

Yes, I realise you can’t do this, but what I mean is, it’s worth taking an open minded approach and trying everything. Take Bob the Blob for example. If drinking yeast shit reduces my brain fog, it reduces my stress. It also reduces my total and utter frustration with the day to day business of dwelling among the normals – never my strong point even without brain fog. As a result, I am a lot less stressed and that makes the headaches easier to manage. And talking to people and making jokes about it certainly helped me cope.

Magnets and cucuramins

If you get joint pain, magnets and curcuramins may help. On the curcuramins front, not the turmeric pills I mean the real heavy duty ones where the curcuramins are extracted and concentrated way more. The bonus of curcuramins is that there is some actual proper scientific evidence that they do help, and they also help fight/prevent cancer. My joint pain was identified as not being down to my arthritic knees during a prolonged bout of physio therapy in the summer. Having tried turmeric pills and discovered a definite drop in the pain levels, I decided I’d give the curcuramins with extra grunt a go and they have helped. Like Bob, they haven’t eradicated the symptoms but they have drastically reduced them and I do now have days where it’s only my arthritic knees that hurts.

Magnets, similar. Putting magnets on joints that hurt works for me. I have no idea why but it does. I use big fuck off magnets, naturally. A lot of the ones you buy are too small to make a difference. You need maximum Gauss to get any benefits. I also find a magnet on the affected area works better than one on a wrist band.

Any other advice?

The best for me, was to talk about it with other people. I’m lucky enough to go to a ladies only gym where most of the ladies are going through the change now or retired. Iti

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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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