Tag Archives: being a carer

This week, I am mostly ranting about … everything

STOP! There is swearing.

Aroogah! Aroogah!

Let’s kick off with a profanity warning: there will be some.

There.

So if you don’t like the F word, do not read this. Especially do NOT read this all the way though and then complain it’s full of swearing or I will flipping well lamp you. And if you’re a bit iffy about swearing, but can cope, you’re probably alright for most of this post but you will want to avoid the song at the end.

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OK, if we’re all sitting comfortably, I’ll begin.

Right now, I feel a bit like this. Not crap exactly, just a bit … blergh … or possibly meh.

The fact is, while I think I might be quite loving, I doubt I’m a very nurturing person. I seem to be bad at caring for people. I need too much space and time alone to get my head together and that is not conducive to surrendering any sizeable amounts of your life to the needs of others, however many times the head says go, the heart sometimes says … well, not no exactly because it’s willing … more like, can’t.

But obviously, I have to. Can’t isn’t one of the options. I have a commitment and it’s nothing close to what most people have to put up with, but the mental and emotional energy it takes to do the negligible amount I do for my parents seems to be disproportionately huge when I add it to the other commitment of being a mum.

This week there was a small blip. Mum and Dad have some living aids in their house that they pay for on lease. It started last week, when they had a call asking if they still wanted all of it, and thinking it was cold callers Mum told the company to take everything way.

Yesterday, I get a panicked call saying, ‘They’re taking the red alarm button, and the alarm that goes off when your Dad gets out of his seat, stop them!’

Except I was at kid’s church, with McMini, so my brother got the call, and mistaking the carer’s phone number for a friend’s, and being in the middle of ‘Comedy Club’ – he’s a teacher and yes, it’s an extra curricular activity at his school – he proceeded to show the boys and girls a thing or two about the art of mimicry. In this case, by answering the call in his impression of David Bellamy (it’s absolutely tip top, I have to hand it to him; imagine a version of Lenny Henry in white, that’s my brother). He then suddenly had to transform to serious, which probably taught the kids far more about comic timing than anything he could have actually planned. I’m still getting giggleback about it though. Mwah hahahargh! I swear I couldn’t make this shit up! And if I did, I’d be panned for making it unrealistic.

So, as McMini and I left the service and I turned my phone on I got a call from my brother. Cue frantic ringing round and I got a company name and a number to ring. After a night stewing, I spent the next day ringing round to get to the bottom of it. Turns out that what we’re paying only covers a fraction of what is in the house. None of us know how we’ve had all this stuff for a year for free but they seem OK with that so long as we pay the full whack from now on or just keep the things we’re actually paying for. Mum remembers their call but didn’t understand what they were talking about.

As the cost of leasing the other stuff is a fair bit, 6 month’s rental is about the same cost of new equipment, I bought replacements for the bits that we hadn’t been paying for which arrived the following day, during my visit, so I was able to install those. The engineer came out to put the other stuff back the following day, too, so all is now peachy. In addition, I explained to them that Mum has dementia too and they will now ring me with any enquiries. I found out some useful stuff, too, like where the heck we got the seat and bed alarm from and whether we are leasing it or own it outright! I had no clue and if Mum ever had, she doesn’t now. So that was a bit of a bonus, even if the method of delivery was less than fun.

Anyway, on the Tuesday, after I’d organised this, I turned to the clock and, joy unbounded, I had a hour left before school run time in which to write. I’d had to send a form declaring my parents have dementia to get the VAT back on the stuff I’d ordered so I’d  photographed it and emailed it off. Needless to say, the moment I sat down at my computer, the company contacted me to say I’d done it wrong so I had to quickly do another one. Then at last, with 20 minutes in hand, which is 400-800 words if I concentrate, I sat down to write.

And I couldn’t.

I was just mentally dead. My mojo had flown and, indeed, it’s been AWOL all week. I like to think it’s pissed off on a drunken bender and will crawl back to me in the equivalent of the wee hours (next week sometime, probably) slurring,

‘I’m sho sorry. I really am. Are you angry with me? Schay you’re not angry with me. I love you Mary, I really really love you, hurrgh bleargh [splat]. etc.’

My mojo is the one on the right. Don’t look at the stain on the carpet or you’ll know I’m a slattern – as well as foul mouthed.

However, I also fear it may be sobbing in a corner somewhere so I have made the odd effort to find it. I managed about 400 words where I knew what was going to happen and just needed to describe it, in my time after sorting the crisis, no creativity required. You know, when you have to get a character from one part of the house to another kind of thing and they walk through a hall which you need to describe, briefly, for later. That kind of thing but there was still no sign of the mojo. Whatever it’s doing, I hope it comes back refreshed.

After that I threw in the towel and heated up some filter coffee, wrote a shopping list of the things I needed to get for supper on the way home with McMini and set off to pick him up from school. We walked home, past the supermarket.

Did I remember to go in and get the shopping?

Did I bollocks?

Did I remember before we’d walked all the way home? Of course not.

The distance I am away from the thing I’ve forgotten is directly proportional to the amount of knee pain I am experiencing at the time. Needless to say, I remembered as we walked into the house, so we had to turn around and go back up the hill. The only positive I can take away from this is that despite my temptation to turn the air blue with invective, the worst word that escaped me was, ‘sperm.’

Snortle.

Yes I said, ‘Oh … sperm!’

Mwahahahaharaargh!

But hey, at least I didn’t say, ‘shit! or fu-beep! or cu-aroooogah.’

Back we trudged, got the stuff, came home. I had to make biscuits with McMini, because I’d promised, even though we didn’t really have time and I was shattered and just wanted to sit down. Then I prepared the veg and the bits of supper I was cooking. According to my fitbit I did two miles back and forth around the house. I just finished in time to squeeze in a quick shower before we ate.

The following day, I did the Sussex run. It wasn’t quite such a good visit, they were both tired, indeed Mum fell asleep over her dinner prompting Dad to shout for me because he was afraid she’d died (bless), and they were less on form, but I did, at least, cheer them up and the carer was around when Dad filled his Tena boots this week, not me. Result!

And this is why I find the care thing difficult. Not because I don’t want to do it. It’s not like it would cross my mind to do anything else. Lord knows they’ve looked after me and now it’s my turn to look after them. I love going to see them because they are hilarious and they are still great fun. Even with the short term memories of a pair of goldfish they are like pied pipers of people – and it’s not as if the memory loss is very noticeable because neither of them has ever been able to find their keys, well … OK the lack of memory is showing with Dad now but he’s got away with it for 12 years.

They are wonderfully, gloriously eccentric and everyone who crosses their path is drawn in, grows to love them, grows to care for them. It is really extraordinary to watch, and kind of cool. Everyone always has, but then, they have always been dynamos in the community, caring for people, visiting them, looking after the elderly the sick and the lonely – even people who are alone for a jolly good reason – and generally just being epic. They’ve had a tramp to stay for the night and Mum has saved two people’s lives that I know of, while Dad, as a teacher, has shaped countless others. They are still working their magic and I want to make the most of it. Likewise, McMini is a gem so I’m not giving up on any of my mum time either.

In short, I wouldn’t do this any differently, I just get frustrated, sometimes, that I seem unable to do anything else as well.

FFS …

The events of those 36 hours sorting the alarms etc pretty much lobotomised the rest of my brain until I sorted it out, and then left it shagged well beyond functionality for some days afterwards. Perhaps that what pre menopausal dementedness comes to when added to the dementedness of the pre menopausal dementia sufferer’s actually, properly, demented parents, and everyone has a little bit of a go, and nobody remembers what in the name of Pete they did.

See how smart he looks? Yeh, that’s a lot smarter than I feel.

Who knows. But I have more and more admiration for people who have no cash to pay for care, who have to look after sick family members 24 hours a day, with no breaks, no let ups. How do they cope? How do they catch a bus or pay a bill or organise a fart in bed with that going on full time? Blimey, I have trouble stringing two sentences together and I don’t have it like them. They must be fucking saints. I have been trying to channel my inner saint. However, he is clearly not like theirs. It is quite clear to me that my saint is like those early hermits; you know, the kind of guy who sat on top of a pillar for 40 years in the desert without speaking – except to shout angry obscenities at anyone who came near so they’d fuck off again – probably while throwing handfuls of his own faeces at them.

And I also have a huge admiration for people who earn a living as carers. They don’t earn that much, and they take a serious amount of flack. My dad gets properly shouty sometimes, usually when he’s feeling undignified. He was heaping invective on the carer on Wednesday, as she changed his tena pants and she was just calm and kind and sweet with him. We all knew he was only shouting because he felt humiliated and wanted it to be over, but there’s a difference between knowing that and not letting it get to you. In her place, I’d have told him to get knotted.

Sometimes, I get how Dad might feel though, why he might be shouty! Jeez I feel like that a lot of the time. There is so much administriviatative shite to do and there are days I want to tell life to just piss off and leave me alone! It wasn’t helped by the fact I had multiple trouser failure this weekend and with one pair left – in the wash – I had to go buy more. All my trousers are through at the arse because I’ve been waiting until the effing shops came up with a choice that was wider than black, black, denim, denim or denim, dark blue or white. Although I do usually like to have one pair of dark blue canvas jeans, but I don’t wear them as much as the others. Indeed they’re not through at the arse, but the zip’s bust. Even so, finding anything else … it’s like the Monty Python Spam sketch.

‘Don’t complain darling, I love black, I’m buying black, black, black, black and black.’

‘Well bully for you but you can sod off! I’m not. I don’t wear black if I can avoid it and certainly not every day.’

I did find a pair of red trousers in H&M but they were three quarter length with faux rips in. I’m too old for faux rips and I’ll knacker them myself soon enough. Then I found some lovely pink ones but only in three quarter length. That said, I have hopes that the pink three quarter lengths may turn up in longs before the year is out. The gentleman in the shop thought they would. Even so, let’s chalk that up as another thing that can piss off! Fashion. I put ‘coloured jeans’ into google and I got a whole load of black, dark blue, denim and white trousers.

‘WHITE AND BLACK ARE NOT FUCKING COLOURS YOU BLIND BASTARDS!’ I shouted, making the cat jump.

Do you mind keeping it down? I’m trying to relax here.

On the upside, despite spending a whole morning looking for trousers, I did manage to replace the three pairs of threadbare-arsed winter trousers I own which haven’t quite gone through. Rock on Mistral’s basement outlet section. And there was me thinking it was a trendy shop for young thin people with no tits! Mwah hahahargh! But I was wrong. I got three pairs of moleskin trousers in light green, wedgewood blue and maroon for £7 a pop. A saving of £105 I think it was. They’re a bit flarey so I’ll have to take them in a little but never mind. Every cloud has a silver lining. I shall return there. Oh yes I will.

Swings and roundabouts, but the mental theme of the entire week in MTM land has definitely been, Fuck Off World!

And when I get like that, I often turn the work of Ian Dury because he was really very good at FOW but in the kind of amusing way that makes it faceable again.

For this particular malaise, a dose of one particular song, ‘Fucking Ada’, does wonders. I suspect it’s not really about a never ending quest for time to think, or the ensuing burn out, or at least not, per se. I should imagine it’s either about the failure of a relationship, or the humiliation of being unable to perform at a one night stand after a culmination of too many one night stands, too many drugs, too much alcohol and altogether too much rock and roll. It could be about depression, too. It could be about all of those things.

Bollocks to that though, because there are sections that perfectly sum up that FOW feeling. And when I’m sad, and angry with myself for not being able to bounce back, and I want the world to just bugger off and leave me alone – not indefinitely, but just for just ten sodding minutes so I can complete a thought – this song is a peach.

There are few things as cathartic as shouting along with Ian for a few minutes. Just make sure the kids are out and you don’t have the windows open. Here it is for your delectation. Words first, vid second.

Fucking Ada, by Ian Dury and the Blockheads

Moments of sadness, moments of guilt
Stains on the memory, stains on the quilt
Chapter of incident, chapter and verse
Sub-heading chronic, paragraph worse

Lost in the limelight, backed in the blaze
Did it for nine pence, those were the days
Give me my acre and give me my plough
Tell me tomorrow, don’t bother me now

Fucking Ada, fucking Ada
Fucking Ada, fucking Ada

Time’s at a distance, time’s without touch
Greed forms the habit of asking to much
Followed at bedtime by builders and bells
Wait til the doldrums which nothing dispels

Idly, mentally, doubtful and dread
Who runs with the beans shall not stale with the bread
Let me lie fallow in dormant dismay
Tell me tomorrow, don’t bother today

Fucking ada, fucking ada
Fucking ada, fucking ada

Tried like a good un, did it all wrong
Thought that the hard way was taking to long
Too late for regret or chemical change
Yesterday’s targets have gone out of range

Failure enfolds me with clammy green arms
Damn the excursions and blast the alarms
For the rest of what’s natural Ill lay on the ground
Tell me tomorrow if I’m still around

Fucking Ada, fucking Ada (ad nauseam)

S0ngwriters: Ian Robins Dury, John George Turnbull

Well, back to running with the beans … It’s Friday and it’s about blummin’ time I wrote something. Well, something other than this gargantuan rant, I mean book something, and hey, I’ve twenty minutes left this week.

In the meantime, here’s the video.

Don’t forget to sing along now.

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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.

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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.

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