Tag Archives: dementia

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.

Advertisements

6 Comments

Filed under General Wittering

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

 

14 Comments

Filed under General Wittering

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 …

9 Comments

Filed under General Wittering

Coming to terms with #dementia

For some time now, I’ve been toying with the idea of starting a blog, or a website, specifically dedicated to my experience of dementia; with my dad, mainly, but also, these days, with my mum since she, too, is getting very forgetful.

However, it seems far more sensible to do it all on here. The subject matter on here is so random anyway that I doubt many of you will take exception to the more detailed post about my dementia-related experiences every now and again. If you look at the menu, there’s now a dementia section and all the posts which mention Dad’s Alzheimer’s are tagged Dementia and should appear there. Obviously, in true M T McGuire form, it would be pointless talking about my situation if I didn’t occasionally share a list of things that have either worked to keep me sane or that I’ve fucked up royally so that you don’t have to. This isn’t exactly that list but below are some of my less than ordered thoughts on the subject.

Here are the golden highlights of coping with dementia, in yourself or in others.

Be not proud! And be absolutely up front with people.

Yes, you read that correctly. All will become clear.

The first sign that something was amiss with my dad was when my parents refused to come and stay. Our spare room was on the top floor and the loo was in the middle. Dad always needed a wee in the night and he began to wake up in a very disorientated state.  Mum didn’t always wake up too and she was afraid he’d fall down our stairs. So for three years, from about 2004, they refused point blank to come and see us. Mum never told me what was wrong, she just made up excuses. She’s bollocks at making up excuses so I assumed I’d upset her but she said I hadn’t. I got very down. I didn’t know what to do.

Luckily, I have a brother so I rang him and asked him what the fuck my parents were up to. He didn’t know either but said he’d ask them. When he broached the topic with Mum she told him at once. So it was he who explained about the stairs, about Dad going weird in the night and Mum’s concerns. The last eighteen months we were in that house Mum and Dad started coming to see us again. We were in a small market town with a perfectly decent hotel and a lot of equally decent guest houses. We put them up in one, within walking distance of our house. The moral of this story then, be honest, because when trouble crops up, there’s usually a work around.

Mum could have saved herself and us heartache if she’d just admitted that Dad had a tendency to get dizzy when he got up in the middle of the night. She wouldn’t have even had to mention the dooh-lally part. Likewise, I could have saved myself a lot of heartache if I’d read the signs and worked out that something was wrong earlier or just asked my brother sooner. But hey ho, it all worked out in the end.

Act early.

These things are like the flight path of a landing aeroplane. You sink, level out, sink, level out and so on to the bottom of the chasm. If you can manage to think ahead a bit, to what the next level of deterioration might be, you can save yourself a lot of grief. It’s hard to look at the next stage of the illness when you,are losing your mind or when a loved one is losing theirs. Naturally you don’t want to think about it, but trust me, for the sake of everyone concerned it helps. For a long time, Mum and Dad seemed to be in denial. Mum kept a very close eye on Dad and I watched her sinking. Imagine if you are eighty and you are looking after someone who is, essentially, a giant two year old. As a mum with a two year old of my own, I knew how hard I found it to keep my eye on him all the time. I can’t imagine how difficult it would be to cope when you are elderly.

Talk about it.

Mum and Dad are actually very good at this, they have talked to me, extensively, about being mortal, I know what kinds of funerals they want, what kinds of hymns, what kind of goodbye. I suspect they’ve willed money for a piss up wake. They also talked to me about what might happen if they went nuts well in advance of any dementia appearing. In Mum’s case we have talked about how she felt when she was in a similar position to that which I’m in now, looking after my granny. My grandmother had lots of small strokes, micro bleeds at the back of her head and as Mum puts it, ‘she just faded away’. For her last year my granny was lying on a bed in a home. In those days there were no living wills or powers of attorney for healthcare. Even so, when my granny got pneumonia, they asked my Mum what kind of treatment she would want, Mum said to make her comfortable. They did, she got better without the life prolonging drugs and died peacefully a few months later.

In her last year, as well as being bed-bound, my granny couldn’t speak and made no signs of recognising Mum’s presence. Mum used to go and see her and sit there crying quietly for forty minutes. The staff in that home were wonderful, and were wonderful to Mum, too. They assured her that my granny was different, more peaceful, even calmer, after a visit. They took the time to see that Mum was OK too. Mum and I still talk about this, and I really wish I’d been able to have the same kinds of conversations with Dad about his dad, who also ended up in a home. It’s hard to talk about these things, but if you can open up to someone you trust it will help and it will also give your carers a feel for what your wishes will be, and how you will want to be treated, when you are no longer able to tell them.

If you are the carer, it’s worth making sure you have someone to talk to and if the main carer is not you it’s worth finding someone for them. There is a lovely lady who comes to see Mum who is the deacon at her church. I saw the lady talking to Mum one time when she was in hospital and couldn’t speak. I asked Mum, afterwards, if it would help to see this lady often. She said it would. She never rang the deacon herself, so I did and now she comes to visit Mum regularly. I know it helps.

People want to help you. Let them and if you can’t let them down kindly.

There are a lot of people around my mum and dad who love them almost as much as I do. They are sad to see people they love and respect struggling. Sometimes it’s hard to accept that the people who love you may be even more upset about your illness than you are. So if you or a loved one are in similar poop, and people offer to help you, let them. Mum and Dad have a big group of folks who give them lifts, pop in to visit, pick up shopping sometimes or generally help out. I think they had a hard time accepting help from these folks at the start but now they revel in it. They get continuity in that these are people they’ve known for some years, yet they also have variety in that it’s not the same old faces. Likewise for the helpers, there are enough of them to avoid fatigue setting in. Despite his dementia, my father is a very social animal, and this has helped him stay with us for far longer. Likewise, Mum and Dad have a four carer team but they also employ a cleaning lady for a couple of hours a week and a family who work in the garden. These folks all give support that goes well beyond their job descriptions. They do this because when Mum and Dad were fitter and younger they were good to these folks. I’m a great believer in karma now that I’ve seen it in action on my folks. So if people offer help, and it’s useful help, let them. Pride has no place in this.

But at the same time, set parameters for your helpers.

If anyone helping you, or your loved one, gets too clingy or too overbearing, tell them. When you are ill and losing your capacity to process everything but your emotions, you don’t have time to put up with anything that will make it worse. So if someone who wants to help is … well … not helping, you have to tell them. Or if you can’t, you have to find someone who can and ask them to do it for you.

My mum loves her garden. She sees it as a living thing, an entity which must be treated with kindness and sympathy. However, she is very arthritic and once Dad had started to get really forgetful, it was too much for her to do on her own. There was a point where the chap who was coming to do the garden kept cutting down the wrong things, pruning stuff wrong, planting vegetables in the wrong places, forgetting to water them etc and you could see that something inside Mum was curling up and dying along with her plants, but she couldn’t let him go. She couldn’t face the hassle of finding a new gardener while she was trying to look after Dad, or, indeed, the hard task of telling the current one she no longer needed his services. Her heart was so full from the pain of seeing her soul mate, my father, her husband, in such distress.

In the end, after a family holiday, my Mum became very ill with pleurisy. At this point, Dad had reached the point where he was so forgetful that he couldn’t cook or look after her the way he would have done. My brother and sister in-law went to stay and they gave the gardener notice and employed the people who do it now. My mum almost cried with relief and the ‘new’ gardeners are wonderful and love Mum and Dad dearly.

Moral, don’t wait for the crash. Take action first.

Avoid being too proud.

Mum is of the old school where she believes that if Dad is ill she should look after him herself and that nobody should know about his disability for as long as possible. But actually, when you’re in your eighties, you can’t look after someone who weighs about eighteen stones, can’t wash himself and has to be talked through the process of going to the bathroom every two hours hours, every night. You need help.

When Mum finally agreed to let someone come and sit with Dad for an hour, three afternoons a week, so she could get out into the garden, she blossomed. And the lady who came round did the ironing and all sorts of other stuff that Mum was struggling with fitting in around caring for Dad. So it helped in all sorts of other ways she hadn’t anticipated. It also meant there was no longer the danger of Dad coming out into the garden looking for Mum and falling down. The carer would bring him out, with his walker, and sit with him.

Even if your loved one seems gone, keep searching.

Dad is very different to how he was. He’s the same person, but he’s a different incarnation of that person, the raw genetic make up. He has lost his filters, his ability to moderate what he says and he has become very much more self centred. Just as a child learns to think about others, so as he regresses to a more simplified state of self, Dad has lost that skill. It’s not his fault. It’s just the way it is.

He can no longer read, his ability to read a novel was one of the first things to go but he is unable to read even short stuff now. It’s interesting that Mum writes herself notes, but even at the start, if she wrote a note for Dad and put it by the clock saying, ‘went out to garden at ten to three back in for tea at four’ he would not think to read it or look at the clock. This was so early on, when he was just my dad with no short term memory. These days he can be a little boorish, which is incredibly sad because Old Dad would be horrified if he could see himself like that. But a lot of the times, the boorishness is asking for help. ‘I can’t get a word in edgeways,’ means, ‘your sentences are too long for me to follow, can you slow down.’ The answer is to speak in short sentences, starting with a shared memory and then as the conversation gets going, you can bring it forward to the now. Lo and behold! Before you know it, back comes Dad. Reaching Dad is all about trying new things. When the landscape of his mind changes, you just experiment until you get him back again.

It’s OK to grieve for someone before they go.

Although I’d recommend keeping it to short bursts. But sometimes you need to cry. Or just drive up to the top of a hill and shout your anger into the wind – my parents live near the South Downs so that’s quite easy for me. But yes, while my dad is still himself in some ways, I still pine for the refined non-raw version. But I also hear him, I hear him in the way I talk to my son, in the anarchic conversations we share, I hear him as I tell my son to get into bed! And that if he could manage to clean his teeth sometime before I die of old age it would be wonderful. I hear my dad speaking through me as I comfort my son after a bad dream. I remember who Dad can be, over and above the raw genetic version I have now, and it’s extremely important to me that I do, that I keep sight of the man who is in there still, but who the present Dad can’t be. And I cry. But that’s OK. Sometimes you need to cry. Ration yourself, though. Indulge your grief too much and it’ll take you under but bottling it up is also unhelpful.

Sometimes your loved one’s disease will speak more loudly than they do.

My dad says some seriously inappropriate things but it’s just his illness talking. It’s hard to accept that sometimes, especially when the person says something that upsets you, but you have to let it go. If you can, it will allow the relationship between you on good days to be much more similar to the old one before the dementia came.

Make the most of the good days.

Need I say more? Enjoy them. Do stuff. Go out on a whim. My parents are the most social dementia sufferers I’ve ever met. They still go out, visit friends, have lunch with people … It says a lot for their friends, too, that they are so accepting.

Pace yourself.

Being a carer is hard. It can fill up your life, suck up your emotional energy, sap your physical energy, your strength of spirit and your creative mojo. Alzheimer’s is a long, slow death of a thousand tiny cuts. To put it in perspective, Terry Pratchett was diagnosed four years after Dad began to deteriorate. Dad’s still around. It’s been about fourteen years, the last nine or ten that we’ve really known something was wrong, but … fourteen for Mum, definitely. Not a barrel of laughs.

The truth is, no matter how much you may love the person in your life who is ill, you cannot give your all for that amount of time. You have to ration how much you give. You have to look after yourself, leave time for yourself, or you will go under and then you’ll be no use to anyone. And if you aren’t the main carer and they are neglecting their own sanity and health, you have to make them understand this as well. As it’s often said, this is a marathon, not a sprint. You can’t run twenty four miles at the same speed as Usain Bolt.

Do what’s right for them: it usually works out.

There was a point when I would worry that Mum and Dad were so far away. It was difficult to get them into a home because Mum was far too well to go into a home and she refused to send Dad into one alone. My brother and I discussed moving them nearer one of us but if we did that, which one of us would it be? We live on different sides of the country. So they stayed put in their own home and I worried that if something happened, and I couldn’t drop everything and be with them, I would have to let them fall. Indeed, eventually, I did.

Mum had a stroke and went into hospital in March 2016. At least by this time we had the afternoon carer and an agency helping Mum and Dad get up in the mornings. I had to ring the lovely lady who would look after my dad in the afternoons and ask her to sleep with my dad so I could drive down to Sussex and be with my Mum. I remember sitting with Mum in hospital at three am. They asked her where she was, she said she was at home, they said she was confused, I told them no, she was having trouble speaking and that what she meant was, she was with me. They finally got her onto a ward at five and at six they told me I should go because the car park was free until six am. I slept two hours that night. Mum came home at three in the afternoon. I had to try and look after both of them. It was horrific. I slept two nights with Dad while Mum slept in another room. Then my boy needed to go to school and my husband to work. I had to go home. I hired a care agency for the following week and my brother came down for the next three nights.

There was a week of special hell while we got a care team sorted. Mum refused to accept she needed live in care, but she kept falling asleep with things on the stove and burning saucepans, and she was getting very forgetful. My brother and I wanted to move them near one of us but they both refused. Now that we have their lovely care team in place I realise they are so much better off where they are, where they have friends and where they have lived for over 40 years.  Once they had twenty four hour care, keeping them in their own home was a no-brainer. Thanks to their fantastic care team, they now enjoy a social life far and above anything I could deliver if they came to live here. They are in the right place for them even if there were points when my brother and I felt like it was the wrong place for us.

Make time for yourself.

When you have children, people say you must keep something that you do just for you; continue your career, a part-time job, a hobby, whatever; something that validates your humanity as something other than your little one’s mum. Something that is not about motherhood. Something that is about YOU. It is very hard to squeeze that in when you are trying to care for elderly parents and a small person at the same time.

That is why, even though I have to fight for the time to write and struggle to find ways of putting my head anywhere close to a place where it’s possible, I can’t give up on it. Because I have to hang onto something that makes me who I am; something that defines me as someone other than Mum and Dad’s daughter, or McMini’s Mum, but ME; Mary.

You cannot self actualise though the job you do, but likewise, you are more than the visits, the form filling, the planning, the admin. Give yourself you time. Allow yourself to be human. You are a person in your own right, you are important as well. Allow time to be you.

Conclusion

Well … that was a bit of a monster, wasn’t it? But in a short snappy sentence, I guess the nub of it is this: when a loved one is long-term ill then, if you want to look after them, you have to look after you.

Chilling is important.

 

8 Comments

Filed under General Wittering

If I’d made this up, no-one would believe me. #dementia

Today, back to real life, sort of, in so far as my life is often like a badly scripted sitcom. Here’s an example.

As you know because heaven knows, I bang on about it incessantly, I am pre-menopausal. Basically, I feel pregnant and teary the entire time, and I have no memory. The only difference is that there’s no baby in there, just a lot of hormonal chaos shitting with my mojo and everything else. I also have parents who live a long way away and have dementia. They are lovely but it’s hard watching them go through this, especially as it started in Dad around fourteen years ago. Sometimes I wish they weren’t around any more. Not because I want them to die but because I can’t bear to see them suffering and after fourteen years, suffering with them getting pretty tough too. It’s a long time to know something isn’t right, to be ready to rush to their aid if required. The last four or five years have been extremely tough and I guess there are days when I just want release from the sadness I carry. Then I think how much tougher it must be for them.

This week, I felt particularly weepy and daunted at the prospect of a visit. Dad had cried for an hour and a half straight the week before and I knew that if he was like that again it would tough. So believe it or not, I prayed on the way down, for something, anything, to take away the pain or give me strength. I know it’s just hormones shitting with my arse, but some days it’s as if I can feel myself crumbling around the edges and this was one of them.

Perhaps, in some form, my prayer was answered …

You see, the thing that probably saves us all is that they haven’t lost their sense of humour and neither have my brother and I. And when I think all is lost and that I can’t hold it together any more, a visit like this one happens.

This morning, I arrived just after eleven and pootled around, as we usually do, had a sherry and some crisps and the lovely day relief carer served lunch. Meanwhile the also lovely live in carer, on her break, went for a long walk. The door bell went and it was from a friend of my parents who lives up the road. He asked if Mum and Dad wanted to go to the old people’s tea party up at the church. It starts at three o’clock which is perfect for me because I go at half two and the ladies who run it do the lifts for folks who can’t get there under their own steam then, as well. As the friend leaves he goes completely the wrong way and tries to leave the house through the sitting room, I point him back the way he has come and he finally locates the back door.

A few minutes later, Friend’s wife rings to confirm. Lovely Live-in has gone for her walk but will be back at half two so we hatch a cunning plan; the lift will come for Mum, Dad and the carer and they will also take the wheelchair. That way, if Dad gets twitchy and starts shouting, loudly, that he’s ‘fucking bored’ Lovely Live-in can pop him in the wheelchair and take him home. All is well, we have a date and I can go home as soon as they are picked up. So we have lunch and relax. During the lunch we have a cyclical conversation revolving round my car numberplate and the numberplate of my grandfather’s car when Dad was still living at home and his first car. He also asks me his age a lot. He is amazed I know the answers, not knowing that I’ve learned them as he’s asked me each question seven or eight times already. His name’s John, so we call this the John-tastic trivia game. He loves asking me questions and is always chuffed if I know the answers. I tell him I can slay all-comers on John-tastic trivia and he tries to catch me out unaware that these difficult questions are ones I’ve just answered. Despite the repeated nature of it all, he is very much himself. I exchange knowing winks with Mum as the conversation progresses, we laugh a lot and have fun.

At two o’clock the old dears are resting after lunch and I’m just finishing the washing and drying up when the phone rings.

‘Hello, this is British Gas,’ says a computerised female voice. ‘Please press any button on your keypad now.’

Stuff that for a game of soldiers, I think, it might be scammers. They do this. They ring you and when you press the button you are put through to a £40 a minute premium rate line. So I wait to see if anything more happens. After a few seconds of silence the plastic lady pipes up a second time.

‘This is British Gas,’ she says again. ‘We are about to send your bill but we do not have a meter reading for you. Please send us your meter reading by the second of October or we will have to send an estimated bill. You can do this by phoning …’ she gives an 0800 number too quickly for me to write it down but I remember the web address, which I write down on a piece of paper. As an afterthought, I 1471 the call and it gives me the freephone number I didn’t catch.

Well, that’s pretty straightforward. I go outside to ‘the boiler house’, the cupboard by the back door where the boiler and the rest of all that gubbins is and read the meter. Then I remember that Mum and Dad pay through Scottish Power rather then British Gas so rather than muddy the waters I decide it would be wise to ring them, instead. Also, I realise that there is bound to be some snappy sixteen digit account number or other that I need to give as well. I check the filing cabinet, find their last bill and, sure enough, there is. So I write it down and in a moment of incredible sensibleness, the actual Scottish Power phone number as well.

The 0800 number is answered by a message which tells me it’s been changed but not what to.

Excellent.

Undaunted, I ring the Scottish Power number. That has been changed too but like the 0800 number it demurs from telling me what it’s actually been changed to. I return to the filing cabinet for another rummage and find another number for Scottish Power. Good, here we go. I ring that and find that has also been changed and once again, helpfully, there is no mention of the new number.

Blow me down. They don’t want to be disturbed do they? I think.

A bit perplexed now, I attach my phone to Mum and Dad’s wi-fi because their house is dead to O2 and pretty much every other mobile operator barring Vodafone which I was with before, which does have a signal on certain special occasions. I dunno, when the stars align, the wind comes from the east and there’s n R in the month or something. I google Scottish Power’s contact details. When I ring the number given, this, too, has been changed but it does give me an alternative number. Marvellous. So I ring the alternative number, enter my parents’ account number followed by the meter reading and Bob’s your uncle! Done. And that’s when the trouble starts. The plastic lady, because this is still an automated thing, tells me the leccy bill is due too, explains that there is no meter reading for their electricity either and asks if I’d like to give that while I’m phoning.

Would I?! Two in one hit! I think, Bonanza! so I say yes and amazingly it understands my voice. I am in the study as I do this, so I nip back through towards the front door, at which point the alarm goes off that says Dad has got out of his chair. I meet him in the hall.

‘Hello Dad, fancy seeing you here.’
‘Yes.’
‘I’ll get the bottle.’
‘No. I don’t need a wee.’
‘I see.’
He looks thoughtful and then gives me a twinkly-eyed smile. ‘Actually, do you know, I can’t quite remember why I’m here.’
‘That’s OK, but you should probably sit back down for a bit because I’m just on the phone and your lift isn’t due for another fifteen minutes.’
‘Alright darling,’ he says.

So off he goes.

Glad that it’s a freephone number I now head out to the boiler house and discover that I’m too sodding blind to read the electricity meter, but there’s a stepladder in there so I climb up a bit and by sticking my nose up close and taking my glasses off I am able to read it. But the electricity meter reading isn’t so simple. The plastic lady informs me that there will be two readings, a day reading and a night reading. I look at the meter. There’s one number. Definitely one number.

‘If you are having any difficulty say, “Help.”‘ the plastic lady informs me.
‘Help,’ I say.

Then she explains that the electric meters have a button and the day reading, which will start with a higher number, will be Rate 1 while the night reading, which is Rate 2, will start with a lower number. Excellent, she is correct. I start with Rate 1, the day reading, and the plastic lady says that it is unusually low am I sure? ‘Yes,’ I say. She’s so aghast she asks again. I confirm. Then we move onto Rate 2. The plastic lady thinks it’s unusually high …

Oh oh, I think. I stop climb up the steps and recheck the numbers and rates. Yes, I’ve definitely written them down right.

Balls. Looks like it might be wired in the wrong way round.

I ring off, head back into the house where ring the number again, this time choosing the option to speak to a human. Fool that I am, I admit that I’m not Mum but her next of kin. Oh, he says, we will have to authorise you then.

Fucking fuck. I think.

At that point, Dad’s I’ve-got-up alarm goes off again and he comes zimmering into the hall.

‘Hi Dad, won’t be a minute, just have to give the phone to Mum.’
‘I need to pee,’ he explains, quite loudly enough for the poor bloke from Scottish Power to hear down the telephone I am holding.
‘Oh lord, sorry, be with you in a minute then. I have to help my Dad to the loo,’ I explain to the guy, ‘Let me hand you over so you can do the bit with Mum.’

Dad and I go to the loo which is next to my parents’ front door. All is fine but he is having trouble weeing. I know that when he can’t go, the carer whistles. So I suggest I do. He thinks that’s a capital plan and because it makes the situation just that little bit more Python than it already is, and because I know it’ll make him laugh, I start whistling the Dambusters March. At which point, the doorbell goes and Mum, who has followed us, manages to intercept the lady giving them a lift to the tea party just in time before she walks into the hall and sees the loo door open and me holding Dad’s cock in a bottle while whistling the Dambusters March for all I’m worth. But of course, Mum also has the phone, with the man from Scottish Power still on the end, and tries to give it back to me.

‘Hang on, just let me pull Dad’s pants up,’ I say cheerfully because there’s no coming back from this now and the man has probably called for the padded van already. Then I get Dad going on his way back to his chair, empty the bottle, wash my hands and take the phone back. Dad is a bit unsure where he is going or what he’s doing so I usher him gently in the direction of the drawing room to sit down out of the way for a moment. But the guy hasn’t finished. He needs Mum to confirm her date of birth and then two lines in their address and then he has to read her some legalese.

‘J….. Ch…! You must be kidding!’ I say and then apologise for swearing. ‘Mum,’ I say.
‘Oh Lord does he want me again?’ asks Mum.

Mum gives her address and date of birth as instructed and then hands it back to me.

‘No wait,’ the man says, as soon as I get the phone back, ‘I have to read her something.’
‘Oops, sorry hang on,’ I say and give the phone back to Mum.

Legalese listened to, she hands it back to me,  at which point Dad leans in.

‘You’re not still on the phone are you? Who is it? I want to go out! Tell them to bugger off.’ Well, I console myself, at least he didn’t say ‘fuck’.
‘No Dad, I can’t, he’s trying to help us,’ I explain.

Apologising profusely to the man form Scottish Power who is doing manful work stifling his laugher, I move away into the relative safety of the study. The man suggests that we all go out for two hours, leave something running and have a look to see which of the numbers has gone up when we get back. I explain that I won’t be there and they are not capable but that I’ll do it next week. He is a sweetheart, especially after what he’s been through, and says that’s grand. He also explains that he’s given a permanent third party access on the account so I can ring up and sort stuff as myself rather than by pretending to be Mum. I think him profusely and we say goodbye.

Then it’s time to leave and I’m finally able to actually ask Lovely live-in, who has just arrived back, if she minds going with them and wheeling Dad back if he gets bored before Mum does. Bless her heart, despite going for an hour and a half power walk with ankle weights on over her break, she agrees.

By this time it’s quarter to three and I should have left fifteen minutes ago but the car that is giving Mum and Dad a lift is blocking the drive and I can’t leave until it moves without driving over the lawn. But then the three of them, and the wheelchair, won’t fit in the car. So I realise I will have to run the wheelchair up there in my car, but it only fits with the roof that side rolled up. Luckily it’s only a mile or so on village roads. I say good bye and get in my car, at which point Dad, who has already forgotten that I’ve said goodbye, shouts that I haven’t said goodbye, so I get back out of the car and say goodbye because he’s forgotten. I then realise I have to go now, right this minute, because the others aren’t going to and if I don’t he’ll forget again and I’ll be getting in and out of my car to say goodbye to him, probably all day. So I wave cheerily at them all and with a round of see you next week’s I do indeed drive over the lawn. In my lotus. And up to the church where I deliver the wheelchair. I am finally on the road just before three, and also, to my delight, just in front of a tractor.

If anyone put that in a sitcom, or as a sketch in Little Britain, people would say it was over the top and unauthentic. Hmm … welcome to my unrealistically hammy comedy life.

Mum and Dad’s wedding photo. Check out the hands. They’re hanging onto one another like they never want to let go. They still love each other as much, even now.

_____________________________________________

On a lighter note, the lovely people at Kobo are doing a box set sale and mine is in. Basically all you do is enter this code, 30SEPT at checkout and you’ll get the whole K’Barthan Series for 30% less than usual.

At the moment it’s definitely running on Kobo UK, Canada and US and AU as well, I believe. So if you’re a Kobo user and you’re interested in picking up a bargain, click these lovely links here and enter the code at checkout:

Kobo US

Kobo Canada

Kobo Australia

Kobo GB

 

21 Comments

Filed under General Wittering

MTM’s Epiphany epiphany – or the Wenlock Edge Moment

I love the New Year. Christmas is over and I am home free. You know how, if you let a bee out of the window it flies miles up into the air as if it’s delighted to have escaped.* Well, yeh, I feel like that.

* Obviously, it isn’t delighted to have escaped. It’s a bee. It’s actually going up there to orientate itself and find its way back to its hive but there’s no harm in a little Victorian-style anthropomorphising of animals every now and again if it’s sensibly done. Phnark.

Anyway, where was I? Yeh. Today, it being Sunday, and the feast of Epiphany (when the 3 kings arrive) I went to Church. I confess, I like church. Maybe it’s because, as a classically trained musician, few things appeal to me more than singing loud shouty songs in a situation where nobody can be rude about my horribly loud corn craik like voice (because that would be unchristian! Snortle.). It’s also quite mantra like, doing the same thing again and again. And it’s calm. Church is where I get time to reset my head.

sunlightinchurch1

This week, I was mulling over my life this last year. I think I can safely say that 2016 has been pretty grim for me personally. Famous people dying didn’t even hit my radar, even the racism and bigotry round Trump and the Brexit campaign was eclipsed by personal events; my Mum beginning to lose her memory, discovering that Dad has alzheimer’s and that he was diagnosed FIVE YEARS AGO! But they didn’t see fit to tell us until September, thereby denying us so many options, things that might have made it easier, or given us a year or two extra with him, the whole of him.

Then there was having to do three mercy dashes when Mum went into hospital. Organising 24 hour care, sorting out enduring power of attorney over my Dad’s side of their joint account so I can help her with the finances, making the 280 mile round trip every Wednesday. Having to let go a succession of very lovely 24 hour carers for no other reason than Mum didn’t like having them there and I needed to show her she could trust me, that I was listening to her concerns. Helping her to gradually adjust and accept them … watching her deteriorate and then rally. That one glorious visit when she was better than I’d seen her for two years a few days before she got really sick. Watching her lose the power of speech, twice. Sitting in hospital with her the second time, wondering if she was going to die, knowing she wouldn’t want to without regaining enough speech to actually say goodbye. Visiting her and finding the hospital deacon there and Mum, still unable to talk, silently crying. Knowing that every bit of sadness I feel about her and Dad is felt to the power of hundreds more by her, because he’s her husband and she thinks that if she dies before he does she has failed him.

Watching Dad deteriorate. Trying to be a jolly, kindly mother to my boy and wife to McOther. Trying to see the good stuff in my life – which is there in abundance, by the way – on the days when the parents thing is just too much and I want to crawl away and cry.

If I’m honest, it’s been fucking awful. And it’s not going to get any better but I think that, maybe, I will.

Today, in church, I had a bit of a … well … epiphany – very apposite on the feast of Epiphany – what I would personally call, a Wenlock Edge moment.

Wenlock Edge is a poem by A E Houseman. It’s a belter if you’re down. Basically, he’s watching a gale blow across the trees on the side of a hill but that’s just the surface. There’s also some kind of upheaval going on in his life and he feels torn and battered like the trees. And he looks at them and realises that people will have been able to stand where he is standing and see pretty much the same view for thousands of years. He speculates that some of them must have been in the same, or similar, doo-doo to him but they, and their troubles, are long gone and he will be over his troubles one day, too. It’s very much an, ‘and this, too, shall pass,’ kind of vibe and very good.

So there we were in church, singing a carol called, A great and mighty wonder which I love because it’s early music and I love the way they mess about with syncopation and speech-like rhythms. And as I said, I love music and I love to sing. I noticed that the tune was arranged by someone who lived from 1572 until 16 something. This is another thing I love about early music, of course. When you’re standing (or sitting) singing a tune that’s over 500 years old, or, as in the case of another one this morning, a new tune with words that are over 1,500 years old it’s kind of cool. And there are so many. The oldest I know of, of the top of my head, is Of The Father’s Heart Begotten. Words: 4th century, music: 11th (rearranged obviously). Now that is fucking old.

Anyway, back to the carol. I’m singing it and it makes me think how many millions of people, all over the world, have sung this tune before me during the last 500 years. I wonder who they all were, and if any of them were sad about the things I’m sad about, and then I realise that of course some were, because with that many people, it’s a given.

And that’s the Wenlock Edge moment. Or at least, that’s the way I do it. And that’s the realisation where everything changes.

That’s the moment when the lense through which I view my life suddenly pans out.

That’s the moment when you are hovering at ceiling height in the office block of your being, looking down on the cube farm of your existence and seeing more than just the bubble of emotion you are sat in.

That’s the second when you see all the other colours in your life and how they shimmer and glow and interconnect. And that, for me, is usually the moment when I suddenly realise that everything is OK. Or in this case, that I’ve achieved a lot more than I thought. That I’m stronger than I realised. I’ve done alright.

And it feels affirming, uplifting.

Actually, it feels marvellous!

Because this time last year, I was worried sick. I’d spent Christmas with my parents, my Mum was getting forgetful and was not very well, her friends and the lovely peps who help her garden, help her clean the house, and who come in and look after Dad. All of them were worried. I was worried. Mum and Dad weren’t safe on their own. The long process of persuading them they needed live in care began.

And I remembered that and I contrasted it with the way I feel now.

And it was surprisingly better!

OK, so watching people you love die the death of a thousand tiny mental cuts … over a period of 8 years and counting … is not a process I recommend for the maintenance of a 24 hour joyous disposition. Yes, there is still the sadness and there is still the pressure. So much to do, not much time to do it in, the requirement to make weekly visits and be a nice mother and wife and funny and good company when I’m actually rather sad a lot of the time. Then there’s the making sure that there is room for grief but that it doesn’t become a habit.

Amazingly, what I realise is that I’m coping. I love and am loved. And there are still good times too. And for all my banging on about looking back on things regularly in my writing, about making sure I realise how much progress I’ve made, about how we should all do that, in this crucial personal thing, I haven’t. I haven’t done it in my writing either.

Doh. Channelling Homer.

Achievements for 2016 then. My parents are in their own home where they want to be. They are warm, cared for and looked after by a bunch of folks who love them almost as much as my brother and I do. They are as happy as their circumstances will allow. They are supported and safe. And me, I’m as happy as I can be that I’ve done right by them, done for them what I’d want people to do for me, made it possible for them to live the way they want, where they want, for as long as they are able.

I’ve done what I can. And suddenly, in today’s Epiphany epiphany, my Wenlock Edge moment, I realised that I’ve done enough: enough to ensure I can live with, and like, myself as a person. I’ve done OK by them. And I’ve done OK by me because even through all the chaos I’m still writing. I’ve been Mummy and Dutiful Daughter but I’ve also, just, clung onto Mary.

And I hadn’t realised that until this morning.

And it feels good.

Happy New Year peps.

______________________________________________

Book stuff supplemental:

There’s a humorous science fiction fantasy authors giveaway running until Tuesday, I think it is. You can win $42 cash equivalent or gift voucher, a box set of the Hitch Hiker’s Guide and paperback books from five humorous sci-fi fantasy authors. One of them is me. You can find that, and enter if you like here.

13 Comments

Filed under Blimey!, General Wittering

Evaluation is the name of the game … or is it just spin? Some career decisions

Have you ever had one of those days when the cold hard truth hits you right between the eyes? Yeh, well, I’ve been having a bit of a wake up for some time now but last week the shit hit the fan. Then, a comment from one of you lovely peps made me think, a lot. More on that story … later.

There is a nagging worry, in the back of my mind, that I’ve come over as a bit maudlin recently. It’s not my intention and I am basically happy but I have realised something about what I thought was my current, temporary, state of affairs. It’s not temporary. In fact, while there may well be different people involved, I’m probably looking down the barrel of the rest of my life.

This raises an issue.

Some days I feel a bit like this.

Some days I feel a bit like this.

Like everyone, I want to be a good mother and wife and a kind and dutiful daughter. However, if I’m going to be those things to any effect, I must ensure that I also have an identity and a life beyond them – even if there’s only time for it in a low key way, it has to be there. My problem is that with the way things are now, I can’t do all those things at the same time. Not to the levels I have set myself. I have to lower my sights. And I have to accept some home truths.

  1. If I am unhappy and unfulfilled I am crap company.
  2. To be happy and fulfilled I have to like myself.
  3. In order to like myself, there are certain commitments and duties to others that I am required to perform.
  4. It is essential that I am a sane, level-headed and likeable human being.
  5. There is a certain amount of me time, and sense of having my own life that is required for me to be a sane and likeable human being. There has to be space for things that aren’t my duty: interests hobbies and yes, my job.
  6. My duty is taking too much space for the career plan I have followed up to now and that is making me frustrated and irritable.
  7. The duty can’t be shirked although it can be streamlined a bit if I can get myself to relax and reduce tension levels enough to increase my efficiency … or just achieve anything approaching efficiency, full stop.
  8. The career plan therefore has to give, or at least be altered to one that’s achievable.

In short, I have to re-establish the illusion that I am in control of anything beyond my reaction to events (even if it’s not true).

The fact is, sitting in hospital with my mum on Sunday was one of the most harrowing things I’ve done. She clearly felt terrible, she was unable to speak – or at least unable to say the words she was thinking after the first few minutes awake. And I didn’t want her to suffer, but I didn’t want her to leave me. I knew she would, most likely, be fine in a few days but even so, bringing in the DNR notice for them to see was difficult.

She’s a lot better, and though she’s still in hospital it is mainly because the Social Worker can’t see her to evaluate her until Monday and I haven’t the stamina to get her home and then try and organise that on my own right now. And I think she needs evaluated.

So all this stuff, all the administrivia that surrounds looking after Mum and Dad; dealing with the NHS, the social, their finance people, their carers, their bank, their utility companies, the folks who deliver their milk … all of it takes time. On top of that, watching my parents suffer takes emotional stamina and energy. My concentration span is drastically reduced, and my frustration at the way every tiny task seems to mushroom into a Herculean labour, normally through my own stupidity or forgetfulness, means my default state is one of intense frustration. My anger-o-meter is always at the red end of the dial, even though I am, essentially, happy.

Other days I feel more like this.

Other days I feel more like this.

On top of that, I’m a mum. For those of you who haven’t had kids, having a child is like having your brain stirred, constantly, with a huge wooden spoon – especially if your kid is as adept at mental par cour as McMini. It’s wonderful but it coddles your thoughts. And while I can express the frustration I feel about my life to him, through the medium of humour usually, I must be careful I don’t unwittingly take it out on him in other ways. And sometimes I know the anger is in my voice, anger that has nothing to do with him, and I have to reassure him that if I sound angry, it’s just frustration with other things, and not his fault.

The net result for me, is that I feel as if I am clinging onto my own identity by my fingertips. That I am little more than a kite buffeted back and forth in the air currents of other people’s neediness. This is not a good place for anyone long term. I have to look after my parents. I can’t not. I have to look after my son. I can’t not. But I also have to find some way, among that, of looking after me. Because if I go down, they all do. And that won’t help anyone.

So, apart from running away from my life and never coming back (not an option) how do I sort this out?

Well, the writer bit of my brain that is bored stupid with Real Life and wandering off is still well and truly with me, but as careers go, my authorly efforts are not going that well.

Basically, I thought that with each book I wrote I’d make roughly the same amount of cash. However, I seem to have plateaued at the K’Barthan Series. After I’d finished the four K’Barthan novels I really needed something straightforward so I wrote a stand alone, Escape From B-Movie Hell. It bombed. I naively thought that everyone who read and enjoyed my four other novels would automatically think, ‘Yeh, I’ll buy this one.’ They didn’t. To be honest, I think I’ve sold less copies of Escape this year than I sold of K’Barthan 3 or 4 in my worst month. Therefore, since 2015 I’ve been kind of stuck in a rut going nowhere, a four book wonder, because in real terms, for all it’s done, I might as well have sat on my arse from July 2014 through to December 2015 and not have written the fifth book. It’s a pity as I had a gas writing Escape and I love the results. I just re-read it, it’s far and away my best book yet but the market begs to differ.

Thus, I have learned that new stuff is not working, and that I can’t afford to take 18 months writing a book which doesn’t work. And THAT means … well, it means I have to make a plan. Also because my periods of writing time are shorter and less frequent, I take a greater proportion of the hours available getting back into the plot of a big complicated book, slowing it all up even more. So, here’s what I’m thinking …

Though my brain is desperate for the regular escapes from Real Life that only writing can deliver, it is in a state of permanent mental exhaustion.  That makes the risk of burnout omnipresent. Full length novels are tricky and another series like the K’Barthan Series will be extremely difficult.  Scratch 6 years for a four book series, in MTM’s new reality we’re looking at a minimum of 15. That’s a long time to wait before I have another two or three books that my readers – or possibly a new group of readers who like that series – want.

However, I need to achieve stuff outside the care zone. My brain needs to write, for sure, and it needs to see projects start and evolve and finish so I can earn enough to pay for my mailing list and the production of new books. For that to happen, with the hampered state of my mental capacities right now, I need to write is something simpler or shorter. So that’s what I will do; write shorter, less complicated books, which I will sell for a cheaper price. And they’ll be about K’Barth. The stories will tie in with the big books and when there are enough, I will have one of the 20k books permanently free, give one or two of the others to folks who’ve signed up to my mailing list and charge real money for the 100k plus behemoths.

Two cyber buddies in writing in my genre started producing short stories as well as novels last year and I have been watching their results with interest. One’s publisher had a minimum ebook price for a novel that was quite high, so he decided to write some shorter things that he could price lower, one just wanted uncomplicated as well as complicated. Both have found that folks are reading their low priced short stories and then moving on to the longer more expensive stuff. They are also getting less complaints about the more expensive stuff being … well … expensive.

So that’s Plan A sorted. MTM’s planned releases for next year: three short books about K’Barth – if I do well – or two if hospital time is at a maximum. They’ll retail at 99p/99c and Gladys, Ada and the punters at the Parrot and Screwdriver will definitely feature in one or two of them. If you have any favourite characters you’d like to know more about, let me know in the comments and I’ll do something about them. So far I have a lot of votes for Gladys and Ada, several for Big Merv and one for General Moteurs. I’ll try to keep the shorts coming reasonably regularly, although if either parent dies I probably won’t write anything for ages afterwards, but I digress.

As my brain can’t do complicated right now – even if it does want to do writing – this looks like a neat solution. Even starting the first short, last week, took the pressure off. Suddenly the full length novel I’m writing, which I’d got a bit stuck on, has started moving again. It’s not about K’Barth so even when it’s done, only a handful of people will read it, but I’ll like it and that’s what matters, so that’s plan B, write a big novel at the same time as the small ones.

Which brings me back to the comment. Someone pointed out that my blog is quite informative and is kind of a book on its own … and that got me thinking. The thing about the blog is, it’s all planned out, well, it isn’t but I know what I am going to say before I start. So it did occur to me that I could write a generalist series of pamphlets about publishing books yourself. It would be a series called, ‘I fucked this up so you don’t have to’. OK no that’s the only-in-my-dreams working title. It would have to be called something a bit more anodyne and sensible like ‘Mistakes I made so you don’t have to’.

The point is, I wouldn’t have to think much to do those, it would just be a case of crafting them. The knowledge, and the trains of thought, are already in my head. I wouldn’t have to imagine or research much. I’d just explain what I have learned. It might be fun. So that’s plan C.

And there, finally, you have it. MTM cares too much. MTM is an authorholic. MTM will switch the pressure from completing long books to completing some short ones that are fictional and non fictional and then the long books can go quietly on in the background at the same time.

The strangest thing is that’s not a huge change in plan. I’ve just shifted the emphasis to shorts in the foreground and behemoth novel in the background. However, somehow, put that way, it feels like it might be achievable.

29 Comments

Filed under General Wittering