Tag Archives: dementia

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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Welcome to my world. Oh look! It’s like a car crash only less pretty …

Last week I was talking about being organised.  Remember that. Mwahahahrgh! Yeh. I did mention, I think, that it’d be a while while I set my house in order first? Mmm. Looking at my schedule, it’s going to be quite a long while even for a normal person. But a good day, for me, is like the aftermath of a multiple car pile up. Messy. And then there’s the weird shit. Take yesterday. Yes, actually, take yesterday, I’d like a new one because it was dreadful. I’m just going to dump the day’s events here, wholesale, to give you an idea of what I’m up against.

For heaven’s sake!

Yes, let me share a glimpse of what my life is like; day in, day out. It all started earlier this week, Wednesday, I think when my Fitbit app started acting very oddly. All of a sudden, it was labelling today’s stats as completely blank, while the day before’s stats – the yesterday section – that was actually showing today’s step total etc. It was weird but I could still understand it so like the plug-in hard drive that my computer won’t read since the spring 2017 update, and like the printer I bought after Window’s decision that I didn’t need to be able to print pdfs anymore, and still haven’t set up, or my computer’s sudden – yet random – habit of arbitrarily closing down all open programmes without saving anything when I put it to sleep,  it wasn’t worth the time and effort sorting it out.

Come Friday morning I wake up, muzzy-headed and gritchy throated with pending cold and discover that it’s 7.33. That is 33 minutes after the alarm on my phone is supposed to have gone off and woken me. Never mind, all is not lost. I eschew any waking up time and leap straight out of bed, never something that puts me in good spirits. I rush to the bathroom to do my ablutions and head back into the bedroom to get dressed. I set the alarm alarm on my phone to go off at 8.50 so I can snooze it and it will keep ringing each 10 minutes. I have no sense of passing time, so if I don’t do this, I will get engrossed in something and suddenly realise that we are all still at home and it’s five to nine.

As I try to set my alarm it keeps saying it’s going to go off in six days’ time. Why the hell is it doing that, I wonder. I check. I’m setting it for ten minute’s time. Why won’t it chuffing set for for this morning like I’m asking it to. I go do something else, come back and the phone has locked, when I look at the lock screen I realise it is displaying the day and date as Saturday 13th January. My alarm didn’t go off in the first place because it’s set to go off from Monday through to Friday and the moronic sodding phone thinks it’s Saturday. Likewise, setting my alarm for 8.00 on a Friday won’t work.

Because it’s Saturday.

According to my phone.

Except it’s not.

Great, so now I will have to set the alarm for Saturday. No wait I really can’t be doing with this. Maybe if I turn it off and on again it will reset? What’s the worst that can happen? Oh yes, that the phone stops working and I lose my Mum and Dad’s banking app for ever. I did drop it in a car park before Christmas, and someone had driven over it and cracked the screen before I managed to find it but hey …

Hoorah it is OK. See the time, the weather app refreshed, 19.04 on 12th except it was the eleventh because this screenshot was taken on the 12th at the time shown the top right hand corner; 15:02. Yes, my weather app went into the future and refreshed itself.

No. It’ll be OK.

Are you sure MT? This is you, after all.

Yes, what’s life for if you can’t take risks now and again.

Sure enough it reboots but nothing goes wrong! Now it’s Friday. I set the alarm to get my 10 minute count downs and carry on. Downstairs, grabbing a hurried breakfast I lay out some vitamin pills and nip through to McMini with a bowl of cereal. When I return McCat is on the counter.

‘For fuck’s sake Harrison! Get off there!’ I shout.

He complies but he trots away with that special fast, I’m-not-running, there-is-nothing-to-see-here trot which means he has something he shouldn’t have. Sure enough he stops in the next room and puts something down that he’s been carrying in his mouth. One of my vitamin supplements. It’s some kind of essential oil but I’d laid out three different ones which come in identical capsules so I haven’t a blind clue which one. The cod liver oil capsule, I assume.

Later, buying cat litter at the pet shop the lady there and I had a bit of a giggle. She told me,

‘He’s definitely in the wrong body, that’s not a cat you have, it’s a dog. Still, maybe he thought he needed a more lustrous coat.’

The day didn’t improve. I had two skeins of wool which I decided I’d make into a pussy hat. I should have known that today was not the day to try and unravel a skein of wool shouldn’t I? I mean, why did I even fucking try. On I go, tosser that I am, and try to do it anyway. I even googled doing it right, hung the skein over a chair the way they tell you but I got this:

That’s fifty metres of wool there, my lovelies. I would buy another one but it’s silk and merino. Not something you think about buying twice. So over the next year and a half I’ll be unravelling that bastard in my spare time. For now, if anyone wants to hire a clown wig …

Yeh. That’s M T McGuire when she’s following the sodding instructions; using the back of a chair to hang the skein of wool over, winding it carefully onto one hand. What I didn’t realise was that the bloody thing was already knotted beyond help so when I started winding it just tied itself into the gargantuan Gordian knot you can see there. At first I couldn’t even find the other chuffing end so it was taking ages to tease out each loop and pass the ball of wool through. Finally I found the other. Then Harrison intervened and now I have four. All this because I want to knit a pussy hat but hate pink, so I thought light pink and the kind of pink that is, essentially, red, would get the message over without being all pink and I’m-a-girl-therefore-I-like-pink and fucking … PINK. Knob that I am.

On the up side, when I scolded the cat he did get the hint and he went away. Mummy is being both boring and grumpy while shaking the biggest and most exciting cat toy ever.

I’ve given up on the bloody thing for a while.

Actual plans for January …

Yes, I did have some.

However, unfortunately January is very busy with trying to catch up with all the shite I didn’t do because it was Christmas. There’s this quarter’s parish magazine – not going to happen until early February I’m afraid, and I promised I’d write a children’s picture book by mid January! Why in the name of God did I think I could do that? And of course, there’s all the pissy admin like putting all the dates of our holidays and term times in the diary in the kitchen and the one on my phone. Want to know how long that took? One and a half hours!

One and a half effing hours!!!! This must be a special skill. I’ve not even finished.

Now, I have to book the cattery for all our holidays and put the drop off and pick up dates in the diary. Aaaargh. And then there’s booking a baby sitter for the inevitable Christmas Party that one of McOther’s clients or another will always have – and yes, are having – this January. And not forgetting windows borking updates.

And I still haven’t done my tax return which has to be done end of January. Two years ago, I opted to do this online which is the stupidest thing I ever did. Sure I have until January to hand it in instead of October but actually October is easier, I have more time then than I do now. Also, if you fill in a paper form, then, if your income is under a certain amount – and mine very much is – you can fill in a short tax form. The online form is the long version. Fifteen pages of questions most of which are so incomprehensible to me they might as well be printed in a foreign language. All with the exciting frisson of knowing that if I get one wrong it’s a crime, my solicitor husband will be struck off and I’ll probably go to prison. Thank heavens the help line is helpful, even if there is a hefty wait to get on.

Then there’s the deadline aspect; miss the January deadline and I’m screwed, it’s a £100 fine but I am already at the point where HMRC will not be able to get a new password to me or unlock my access to their website should I discover I’ve lost my password and am unable to get onto it (they say it takes up to four weeks). That also adds to the excitement. Yes, of course I meant to do it last month! And the one before! But with all the joyous task of filling in those bastard Lasting Power of Attorney for Health forms and preparing for bastard Christmas it was impossible. Short of pulling an all-nighter, there was no time left to do it in.

Organised people won’t understand this but then organised people don’t have phones that tell them it’s tomorrow all fucking week and they probably have time to work out how to get Windows to install security updates but not the other periperal-destroying shite my version insists on adding as well.

Then there’s Dad. Dad is becoming increasingly surreal. On Thursday one of our lovely carers, Aimee, took Mum and Dad to the dentist, where Dad announced, loudly, that Mum was his mother, Aimee was his girlfriend and that although there was a bit of an age gap it was OK because he does have a ten inch cock. Jeez someone is going to sue us before long, and we will counter-sue for discrimination against someone with a disability. Luckily the folks in the dentist, like the folks at the garden centre and all the other places where Dad has been inappropriate are OK with it. On a lighter note, I discussed this behaviour with Mum and Dad’s doctor on Thursday morning. He was telling me that he had to prescribe medication to stop some of the gentlemen in the dementia wing at the local care home from making improper overtures to some of the lady inmates. I guess when you think you’re eighteen but are really an octogenarian with the social niceties of a toddler that’s what happens.

God help us.

And now, as I sit here and type, I look down and realise I’m wearing my jumper inside out and have been for half the day. Head, desk.

Every single fucking day is like this. Frankly, I’m I consider it a victory if I get enough of my shit together to dress before dark. And it’s not going to improve. This is a short term. Five weeks either side of half term. In other words, there will not be time to sort all this bollocks out before the wooden spoon is inserted back into my brain and everything is given a good old stir.

So to put it in pictures …

Planned MTM January.

Obviously … but I’m a realist.

Type of January MTM would settle for.

Yes, I would settle for this, I mean, it’s a bit stringy but it’s tidy and it’s all there.

How MTM’s actual January is going so far.

See illustration, left.

Status of MTM’s efforts to catch up: Exactly the same as day one.
Progress achieved: Zero.

Hey, it’s January, let’s see more people and do more things and catch up after being away for Christmas!

NO! Fuck off!

So there we have it. Clearly, I’m going to be spending January and February firefighting and catching up. Ho hum.

Here’s to the start of the MTM New Year in March, then.

Thank you for reading. If you have been trying to organise yourself this new year, and, like me, have had the wheels fall off your efforts before you begin, I hope this has given you a laugh and cheered you up.

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Ten a penny … Tena pants … Bittersweet Christmas

  1. Language alert on this one: my dad’s rather than mine.

_________________________________________

Just departing from my usual Saturday schedule to post this. There isn’t time for me to do a Saturday post so there won’t be one this week but I promise I’ll finish the where are we now post the week after. I just wanted to post about Christmas at Mum and Dad’s because it was so surreal, I am not 100% sure it happened! And I think this post should go out sooner rather than later, so here it is, on a Thursday. Oooo. Yeh, that’s me, right out there. Posting on a different day. Right then, on we go.

As you know, my dad has dementia; Alzheimer’s and Mum possibly has the same but it could just as likely be exhaustion from looking after a man who only sleeps a couple of hours a night, keeps proposing to the carers and thinks she’s his mum.

We bravely went for three nights this year, and the preceding weeks were spent liaising with the carers over who had ordered what, when and what with. Somehow we managed to order just the single turkey, yay we rock, and the one we did order was from a local farm where they are properly looked after and respected. We did think there was sausage meat to stuff it but on Christmas Eve we couldn’t find it. Meanwhile Mum discovered a box of stuff she’d bought including a box of bread sauce mix, which I’d completely forgotten, phew! Said box also contained chestnut stuffing mix, so in the absence of the sausage meat we thought we had, into the turkey it went. Woot.

Shortly after I’d stuffed the turkey with chestnut stuffing mix, McOther discovered the sausage meat for the sausage meat stuffing – too late for me to have to make it, which, while a little sad, was also good in that it saved me a job at a point when I didn’t really have time to do it. Instead we cut it into ice hockey puck shaped things and cooked them with the bird.

One minging balloon. You can just see the green shred of the other one in one photo.

Christmas Eve we had to wrap the stocking. Obviously, we’d seen that coming and wrapped everything we could on the day of purchase! I had found some completely vile balloons in Wilco which were hilarious but took a fearsome amount of courage to blow up. One ended up deformed, only one ear inflated fully and I couldn’t get the other one to fill. Unfortunately, before I got to take a picture it burst! Boo! The other one popped after getting too close to the tree, but I have a picture of the purple one – the only survivor of the three.

During our first night, I woke up several times to the sound of my dad bellowing orders:

‘I’m NOT wearing these.’ … ‘No.’ … ‘No you bloody stupid woman! I REFUSE to wear them!’ … ‘You’re a thoroughly unkind woman! You’re horrible! Not like … she’s a NICE person.’ Dad is incontinent and was talking about removing his tena pants. He does this every night and he also does a lot of pooh every night which makes a delightful surprise for the carer in the morning – except it’s not so much of a surprise these days.

Other gems included: ‘Will someone come and turn the fucking telly on!’ at about three a.m. and then,

‘Will someone PLEASE come and bloody well get me dressed.’ (at about four a.m.)

Meanwhile during the day, ‘Will someone turn the fucking telly off.’ and ten minutes later, ‘Will someone turn the fucking telly on.’

It’s like Father Jack combined with Granddad out of Bread. This is the reality of living with dementia. I read that the best thing to do with dementia folks is to go with the flow. A while ago he told me that he had to go for a walk NOW. I looked outside and saw that it was blowing a hooley and chucking it down with rain but I knew he’d get in a state if I told him, ‘no’ and I thought I’d give the go with the flow thing a try. So just said,

‘OK Dad, come on then.’ By the time he’d got into the hall I said, ‘Hmm, I am daft! I can’t remember what we were going to do next.’
‘I don’t know,’ he said, I’ve forgotten, too.’ so I said,
‘Maybe we came out here so you could have a wee.’
He brightened up,
‘Yes, that’s right. What am I coming to that I can’t remember?’
I said, ‘I dunno,’ and we had a bit of a chuckle about and I added, ‘I’ll just go and get your bottle.’
Wee sorted, back he went to his chair. No more chuntering about going outside.

The trouble is, that’s fine during the day. Sure, maybe overnight the carer could agree that he could get up, suggest he goes to the bathroom to dress, then by the time he’s got there he may have forgotten and then they can just so the wee thing and take him back to bed. He might remember he was getting up and call their bluff though. Some ideas are more fixed than others. That’s fine in a home, with night staff, they could just get him up and he would probably sleep quietly the rest of the night in front of the telly. But that’s not so easy at home when the same people have to be up and awake with him during the day who were up and awake with him all night. I guess this is the point in the Contented Dementia Sufferer where they recommend the person with dementia goes into a home. But Mum has promised Dad he can stay in his own home and feels that she must honour that promise, whatever happens.

But I wonder what Dad would say, real Dad, before the dementia came Dad, if he could see her now? He would be horrified to see Mum going through this. He would be saying, ‘No darling, you simply can’t be expected to do this, you have to put me in a home.’

He has reached the shouty angry stage of Alzheimer’s and remained shouty and angry from our arrival through to the morning of Boxing Day. And there’s the whole thing that this shouty Father Jack clone who lives with Mum is a million miles from the person he was. He’s in there, but it’s really hard to solve the human puzzle that is demented Dad and find him. It doesn’t mean we should give up, but I wonder if we should take a different view. The trouble is, Mum has to do what she feels is right, but I’m hoping to persuade her to balance that. She can’t keep caring for Dad as if he has been given seven months to live. She’s been doing that for fourteen years. She needs to accept he will be around, let go of the fear and step away every now and again to recharge her own batteries. But persuading her is easier said than done.

As I may have mentioned, Dad was in a bit of a grump when we arrived. He is usually an unhappy chappie in the mornings but once he gets downstairs and has some food he perks up. However, I missed a trick on Christmas day. The food was too complicated, the plate too full. He needed the turkey cut up, he needed a tiny portions of each thing with plenty of white space in between. He didn’t eat. He was overwhelmed and asked to go back to his chair. I let him. He had ice cream for pudding but ate very little else. Another situation when he’s not a happy man; when he’s hungry.

He was too grumpy to come to the Christmas Day service, but that was a good thing, as he was in the kind of mood when he’d be singing Old King Cole or obscene limericks very loudly and shouting that he needed, ‘a fucking piss’ instead of the carols or something.

He has rather lost the idea of time if he says,

‘May I have a cup of coffee?’ and it doesn’t materialise by his side as he is finishing the sentence he will fly into a rage. ‘Hurry up you stupid bloody woman! I want my coffee!’ It took me a while to get the hang of laughing him out of it. It’s one of the reasons I really dread having to help him wee. Because he has a tendency to start berating you if his pants aren’t pulled up the second he’s finished. The first time he did it to me I wasn’t prepared for it at all and I got it so wrong he smacked me over the head.

On Christmas morning he asked me who I was so I explained I was his daughter.

‘Oh yes, I remember. What a pity you’ve got so ugly.’
‘Thanks Dad.’

Everyone in Dad world needs a haircut. ‘You need a haircut!’ is one of the main things he says to everyone, women and men, on a loop. He appears to want us to all have Lego mini figure hair, smooth and unruffled. Three brillo heads staying must have been a joy for him!

He’s deteriorated fast this year and even in the ten days since I’d last seen him. Dad and I have a joke about the German word for father which sounds very like ‘farter’. So I’d shout, ‘mine farter oh mine farter!’ and he’d say, ‘mine taughter, mine taughter,’ no idea how to spell these words, I’m doing it phonetically. We’ve been doing this joke since I was about fourteen and as he has become more and more demented it’s become our anchor, setting the tone, setting the scene, placing me. Do the joke and at once he knows who I am.

When things started getting a bit dicey on Christmas day I gave it a go.

‘It’s not father, it’s vater, with a v you stupid woman. Get it right for god’s sake!’

So he’s forgotten that one then.

Ho hum.

So how did it go?

It was bittersweet.

Upside: McMini – McMini all round actually because was fab and Dad didn’t swear at him once. He also got to light the Christmas Day candle on the Advent wreath. I didn’t have to change Dad’s nappy. I got to prepare a turkey dinner for only the third time in our 22 year marriage (which was awesome) – and I also got to help McOther cook it.

Downside: Dad didn’t really cheer up until the last day we were there so it was hard work and I felt I’d missed him for three days of the four.

Special commendation: to McOther who had to deal with Dad plus full tena pants after the carer had left for her day off on Christmas Day and McMini, Mum and I had gone to church.

Did we have a good time? In parts, which leads me to something important.

Important Thing.

Not everyone enjoys Christmas. Not everyone has a laugh. There are more deaths at Christmas than any other time, which, presumably, means there are more people grieving. More suicides, too. There are more folks who are sad or upset than you could ever know. There is so much pressure on us to have a fun, be joyful and happy. Everyone is going on about how wonderful it is everywhere you look, with their elves on their shelves, their acrylic festive jumpers, their relentless happiness and hall decking and Christmas cheer.

Bastards.

Fact is, for some folks, Christmas is sad, or difficult, or painful. And you know what. If you’re one of them, it’s OK.

Lost a loved one? Looking after someone critically ill? Looking after someone with dementia? Dealing with depression? Dealing with chronic pain? Full time carer? Eating disorder? You are not alone. Here are some I know, a lady lost her son three weeks before Christmas, another lost her husband six weeks before and another lost her husband the week before. Another lady spent Christmas Day in A&E with her husband and lost two sisters over the last two weeks. Two lovely ladies I knew died of cancer just after Christmas, both leaving loving husbands and children. My Grandfather’s mother had a heart attack and died in his arms on the way home from church on Christmas morning. In the news tonight, a lady in her sixties and a policeman died in a car accident on Christmas Day.

You are in good company.

Shit happens, and in that way, Christmas is like any other day. I hope with all my heart that you did enjoy Christmas; that it was wonderful, warm and loving and that it brought you everything you wanted. But it’s not obligatory if you couldn’t manage to enjoy it this year. Sometimes life is hard and sometimes doing the right thing isn’t always the easy thing. Sometimes, you just have to grit your teeth and do what has to be done, or do your utmost to make it as happy for the people you love as you are able.

Sometimes, even when it’s overflowing with love and warmth and compassion and kindness, Christmas still hurts.

It’s worth trying to look for the shiny bits. If they aren’t there you can always have a go at making some even if it’s just finding someone who is having it harder than you and giving them a hug. They’re there, believe me. But if you can’t find anyone obvious, take heart from that list there. It isn’t just you.

That’s the thing, I guess. It isn’t always easy or enjoyable. You don’t have to pretend it is. You don’t have to pretend it’s OK. Finding it difficult is far from failure. Lots of people struggle at Christmas, so if that’s you, here’s hoping it gives you the strength you need to know you are in good company.

God bless, hang in there and good luck.

___________________________________________________

And just in case a word from the Samaritans. As soon as I have the time to do it I am going to become one.

Whatever you’re going through, call us free any time, from any phone on 116 123. We’re here round the clock, 24 hours a day, 365 days a year. If you need a response immediately, it’s best to call us on the phone. This number is FREE to call. You don’t have to be suicidal to call us.

There you have it peps:

Samaritans UK and Ireland 116 123
Samaritans Astralia 135 247
Samaritans New Zealand 0800 726 666
Samaritans RSA 0800 12 13 14/0800 21 22 23
Samaritans USA 1 (800) 273-TALK.
List of suicide and depression crisis lines round the world – careful of this one, the first on each listing is the emergency services number but if anyone outside those other areas needs one I hope this link will help: https://en.wikipedia.org/wiki/List_of_suicide_crisis_lines

 

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When dyslexic people try to fill in forms … #dementia

This week, a cry for sympathy rather than help, hopefully, in a way that is amusing or useful to you.

Last night, McOther and I were invited to a Christmas party. We went. He from London, me from here. I met him there. I was late because our babysitter couldn’t get here before 7.00pm – although I had only just hopped out of the shower when she arrived. This year, the babysitter had not had a car accident, McOther was not in the middle of some stupid deal and it all went off without a hitch. Until we drove home at which point we found a sign announcing that the road would be closed at the next junction. So we ended up having an interesting adventure driving around the Suffolk countryside on muddy single track roads, in the middle of the night, at temperatures of about four below so the mud was mostly ice.

This is the story of my life right now.

Nothing is quite going to plan.

It’s not that things are going badly, or over complicated even, just that they are consistently arse-about-face. The simple things complicated and the complicated things … nope they’re still complicated. It’s not all hand of God like that one though. A lot of the cock ups are my fault.

Obviously with Christmas looming I’d expect things to be going slightly wrong, but this year, even November, which is usually a nice quiet month, got complicated. It all started about ten days in, as I was cresting a very creditable 25k in the first ten days of NanoWriMo. My brother phoned in a panic because the accountant who does Mum’s tax return had been onto him telling him that he must do this that and the other, and suggesting we remove all Mum and Dad’s remaining estate from stocks and shares and into a high interest account. It sounded barking to me but what do I know? Luckily after a few phone calls to check the situation, and a consultation with McOther who understands banking and shizz in a way I don’t, it was all sorted out but it took several days.

At the same time, my brother raised a second thing; that we need to have a properly legal power of attorney over Mum and Dad’s health – yes my lovely peps a Do Not Resuscitate form is not enough, why, I do not know but it seems they have to express this intention formally, using a living will or a special government form. The form is massive and it has to be witnessed, counter witnessed, another independent person has to sign to say Mum and Dad are not being coerced and they all have to do this in front of one another. The form has to be signed in a certain order, or it’s void and when it’s done it costs £110 to file each form, which you don’t get back if you fuck it up and you have to pay again to resubmit, although they will let you resubmit it a second time for half the fee.

To complicate things Mum and Dad’s DNR was signed three or four years ago and the legal stuff must be organised while Mum and Dad are still capable of stating their intentions about this or we would have to make them wards of court or something horrifically complicated. Mum is fine but I wasn’t sure about Dad. I knew I’d have to get the forms filled in and ready to discuss by Wednesday so I could go through them with him when I visited.

Having taken this all in, it occurred to me that I had pissed several days of Nano to the four winds but I had written the middle week of Nano off anyway, because Mum’s birthday is on 18th November and she isn’t really able to organise things like a cake, day out etc for herself so some of that, notably the cake for 15 people, would fall to me. We were all going to have lunch with her at the pub on the Saturday. Likelihood of both attorneys, both deputy attorneys, Mum and Dad in a compos state and enough hangers on about to witness the thing being in the same room in the same place again within another year, low. And, as I said, the middle week of November was already shot writing-wise so I decided I may as well lob the form filling into the mix. Along with the cake.

Finding the forms online was reasonably straightforward and I printed them out and set about filling in the obvious bits. After cock ups galore, I ran out and when I came to print some more I discovered that the latest Windows update had some issue with older printers so I couldn’t print them. So I rang and got them to send me two copies. Thanks Microsoft, I have a computer that won’t save anything to the remote hard drive I bought for it after the last upgrade and which can’t print anything in less than half an hour after this one. Way to go. Yes if I had world enough and time, I am sure I could browse our help fora, as you very reasonably point out, because I’ve nothing better to do with my available time than spend a couple of weeks of it fixing my computer so the drive is useable and its 64bit operating system is, once again, able to talk to a 34 bit printer. I could. But unfortunately, you total and utter bastards, I have a life.

After the helpful intervention from Microsoft I sent the forms to my parents’ email address and on the next Wednesday, I visited Mum and Dad, printed out several copies and set about filling them in. I must state, at this point, that while the forms, themselves, are a nightmare, the government helpline to assist you is staffed by wonderful people who answered my numerous questions about the bleedin’ obvious with politeness and endless patience.

Filled in forms 1 and 2 on the left, instructions and stuffed up pages on the right. Pen, for size reference.

Naturally, since it’s a government form, and you have to have about ten people in the room at once to sign it, two of whom have dementia, plus three children ranging in age from seven to nine who are a bit bored. Distractions are everywhere and opportunities to fuck it up are legion. Add in that the person ‘organising’ it all, the ‘sensible one’ in my family is pathologically unable to fill in any form without fucking it up at least three times and you have a recipe for disaster. I had seven copies of each page. I used every. single. one.

Indeed I had to print an extra one to redo when I discovered that if I so much as scratched out a letter Mum and Dad, the two attorneys and the two deputy attorneys all had to initial them.

Mwahhahahahargh! Another MTM cake wreck.

Meanwhile, a family tragedy overtook two of the carers on the morning, which meant the cake for fifteen which I had made and McMini had helped me ice was somewhat redundant. It also meant that I was going to have to arrange lifts to the legion of appointments with the nurse, hospital, dentist etc that Mum had over the following two weeks while they were on compassionate leave. Obviously, dear Mum did just enough to make it really complicated, organising lifts, then forgetting, or asking me to and forgetting and then organising them so we found two doughty folks had stepped up to help. But we got it sorted. Just! And it could have been so much worse, because the other two carers stepped into the breech and were wonderful while the other ladies were on compassionate leave. We still had a good day on the birthday, Mum called it her ‘best birthday ever’ even if a cake for fifteen was a little more than was required … and I got the forms signed …

… Except I didn’t.

Oh no.

Dick brain here managed to miss the page where the attorneys have to sign and so I had buy two hard backed envelopes so I could send those to my brother to sign – with the second envelope stamped and self addressed inside (he lives further from a post office than I do). I left them to ‘rest’ for a week while he was doing that, on the pretence this would make me more efficient when I checked them but really, just to see if I could jemmy in the last few days of Nano.

This week, there was a panic about Christmas, who would make the cake? Not me!  Yippeee! Who would order the turkey, Mum hadn’t, I did, just in time. Phew.

And then yesterday, back to the forms. One round of final checks as I was getting them ready to post and I realised one of the other pages my brother signed had managed to slip through without a witness signature.

Head desk.

Another joy of having a form of dyslexia, you only seem to see these things one at a time, so you check and find a mistake, rectify it, check, find another and so on. I just hope I cease to find mistakes eventually, except, when I cease to find them, it won’t necessarily mean that there are none.

Anyhooo … The lady who had signed as a witness isn’t one I routinely see on a Wednesday. Would I have to arrange a special meet? I rang the government helpline and was told no it could be someone different. So now, on Wednesday, the lovely carer on duty is going to sign as witness.

At the same time, I was working on the other form my brother mentioned, the thing where Dad gets a community charge reduction. Turns out I’d filled that in and sent it to the Doctor to certify at some stage AND COMPLETELY FORGOTTEN! Help me God! How? I found out when he popped round to see us on Wednesday with it and while it was a lovely surprise to discover I’d been so efficient it was a bit of a shock to have completely erased such a land mark event from my memory.

Form for Dad was signed, I’d done one for Mum on the off chance but Mum has no diagnosis for her memory gaps and isn’t really mentally prepared for the news, if we are to get her one, so I can’t get a reduction for her but I can get one for Dad. So yesterday, having discovered I’d bollocksed the Lasting Power of Attorney for Health forms I turned to the Community Charge Disregard for Dad, called a ‘disregard’ because they disregard that person when totting up the bill, except they only disregard 25% of him but I’m not complaining because it’s a sod of a lot better than refusing to disregard him at all, sorry where was I? Oh yeh.

There are two parts to the form, a bit the doctor filled in and another bit which I fill in. Needless to say, I ballsed it up. Manfully I print one. After twenty minutes of printing enough of it has come out for me to discover it’s auto set for landscape.

The form is portrait.

Swearing colourfully, I cancel the print job and after waiting ten minutes for the printer and computer to sort that out with one another, I check the ‘portrait’ box and set it to print again. I leave it and sort the washing into darks and lights, change the sheets on the beds and come back to find it’s printed a quarter of a page. I go and make a spag bol for half an hour and discover it’s now half done. Then it occurs to me I have no address to send it to so I ring the council to ask, they ask me for my account reference, I say I don’t know it and ask for the address which the lady thinks is on the form but she’s kind enough to give it to me anyway. As I write it down, I hear the sound of the printer spitting out the completed sheet. I look at the form. It is set out as a table with shaded headers for each bit. At the top, above the table is a tiny bit of type which I only notice now that the woman has asked me for it. ‘Account Ref’ it says.

Fucking shit.

Do I have the account reference number? Do I bollocks?

But wait! I can look at the bank statement, it will be on there won’t it? I spend five minutes getting into the account with the special secret code that you get by putting a different password into to your phone and have to type in before it expires and it’s numbers and you have discalculia so you have to do it twice and it forgets all the other answers you’ve typed on the page because you got the one wrong so you have to type them all back in and then the new passcode has expired so you have to go back to your phone and do the other password again and so on.

I get in. Is the ref number there?

No.

Arse.

Second job for Wednesday, find the knobwanking reference number.

Here’s hoping that when I check these bastard forms next time, they will all be in order.

At the end of it all, Mum, my brother and my sister in-law sat me down and told me I must pay myself for the stuff I do for Mum and Dad. So now I’m earning one day’s ‘consultancy’ a week from them, which is what I’d be doing if I was efficient.

On top of that upside, what of Nano? Well, I did 35,000 words in less than half of November. OK so that isn’t a ‘win’ but in the number of days in which I was actually doing writing, that is a gargantuan result. And, it shows that:

  1. The Joe Nassis method of planning a bit, even if you don’t normally plan, on line seminar I went to and took copious notes about does actually work for me.
  2. That if I can make time to write, any time at all, and structure it properly, I’m fucking productive!
  3. There will be a novel out next year.

Woot.

Finally, a note on powers of attorney or planning generally. My parents sorted out enduring power of attorney forms in 2004 so that if anything happened we could take care of their finances smoothly. At that time health was usually implied, certainly in the way the homes and hospitals my grandparents ended up in consulted my parents over their wishes in regard to treatment. As I said last week, I remember talking to my Mum after the home where my Grandmother was had asked her whether they should aim to cure my grandmother of pneumonia or make her comfortable. These days she would need to be officially and legally entitled to make that decision for my Grandmother and likewise, I need to be, to make decisions like that for her and Dad. Best laid plans of mice and Mum and Dad etc. You can plan but even when you do, you have to accept that laws change, the landscape alters and things move on.

Also, if you’re doing these forms for finances it is worth consulting the bank. Despite having power of attorney over my Dad’s affairs, I am not allowed a bank card for him, so it’s worse than useless when it comes to the day to day matter of trying to buy things or get cash out for my parents, etc, etc. Luckily, they have a joint account and it is a key reason why we haven’t activated Mum’s; because she needs cash, and she’s two to three hours away by car, so the ability for her, or her carers, to get to a cashpoint themselves, or pay for things by card in a shop is very important. I am certified by the bank to do telephone and internet banking now, which helps a lot. So I keep an eye on her bank account, pay the wages and liaise with their stock broker when they need more cash. It works very well, and I consult Mum each week about what she’s paying and to whom, but it’s definitely a compromise and I’m not 100% sure if our method is exactly by the book.

After all this, the other day, McMini with his somewhat gappy smile, grinned at me and then, pointing to the large empty space where his new front tooth will grow said, ‘Look Mummy! My gums are bald.’

And so it continues …

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