There’s been a bit of a long break and I thought I should probably pop in here, if only to reassure you that I’m still alive. There is a reason for my absence. First up, I was away on holiday for two weeks, during which I incredibly cleverly managed to get COVID 19. We all had it, the boys for a couple of days each. Me? Like all colds it went on for chuffing ever. First a week of really bad allergies during which I consulted a pharmacist in the resort and as it only appeared at night she reckoned I was right in thinking it was allergies.
Then, on our last day at the ski resort, I woke up with a temperature and a full blown cold (I get a temperature for the first couple of days with most colds, I’m rubbish at them). The cold turned into a two week sinus infection. After that there was a period where I felt very post viral. Once I’d been clear five days I went to church (I sing in the choir) and at the end of the first hymn I was surprised at how weak and sweaty I felt. I think it’s pretty much gone now but I’m still really tired and I feel terrible about all the people I met and spoke to over the second week on holiday, when I was huffing COVID cooties over everything. I sincerely hope I didn’t give it to any of them.
On the up side, although I didn’t know it was COVID I knew I had a cold and I felt it was only polite, in the current pandemic, to wear my mask for every and any interaction with other people. I also sanitised my hands to the point where they were so sticky I could probably have used them to climb up the sheer sides of glass buildings. Probably.
Hopefully all that protected everyone from me. I think masks probably stop more coming out than they stop going in. I hope so. The fact it was Easter and everything was shut also helped as it meant I didn’t sit in restaurants infecting people the way I might have done if any of them had been open.
While I was feeling drippy and post viral, I ditched anything that I absolutely didn’t have to do. So that meant everything except a bit of writing here and there, my monthly newsletter and Mum stuff, of which there is a craptonne right now. I also included ditching the blog. Although, I’m beginning to think that ditching blogging might not have been such a good idea. Not in the long run.
I didn’t mean to talk about this today, but I’m going to because, fuck it, this is my blog after all.
The thing is. The Mum stuff has been really hard. There was so much of it that at first I was afraid (I was petrified!)
Kept thinking I could never live without you by my side. At first I did just go into fluffy-bunny-in-the-headlights mode but after a few weeks of going, ‘shiiiiiiiiiiiiiit!’ I managed to belt up and did what I always do in situations like this. Ignored it and pretended it would go away. No! I stopped looking at how much there was to do and divided it up into little tasks; began at the edges if you like, chipping away at it one small job at a time. Phone this, post that, check these etc. Trying to do one small thing each day.
Net result; I’ve finally broken the back of it. I should be smug and yet, I still feel a bit overwhelmed with it all at the moment. I know why, too. I’m coming up to the anniversary of Dad’s death and I miss him, real him. When Dad was sliding into insanity, I could always ask Mum stuff. But now Dad has gone and Mum is sliding into insanity and there is no-one to talk to. Well no, there is but I’m making these decisions without the ultimate authoritative input of the demented person’s spouse, whereas when we made them about Dad it was simply a case of discussing it with Mum.
This is the hardest and loneliest thing I’ve done. It’s worse because I know my brother doesn’t really agree with what I’m doing. I love my brother dearly and I don’t want to fall out with him but the stress of continually going against what he wants, and what is actually the most sensible course of action, is a bit grim. The trouble is, the sensible thing isn’t what’s best for Mum, and if I want to be able to look at myself in the mirror every morning for the rest of my life, then I have to do what Mum wants. Even if she is as mad as a box of frogs. Even if, were I to ask her aged 50, she’d be horrified. It’s a bit of a shit position to be in.
Also, with the mountain of stuff I had to do, and the fact I was recovering from COVID and couldn’t do much else, I did have to have a bit of a sprint at it eventually. Drop everything and sort it. This approach is OK for a short time but with the COVID it went on longer and … I suppose I’ve looked too hard into the face of Mum’s dementia for too long and that always leads to trouble.
The trick with dragging the millstone up the hill is to know what’s happening but at the same time, not acknowledge it. Like some warped Magic Eye picture, I can see the image but I mustn’t uncross my eyes and let reality creep in or I will be undone, and god knows I can’t be undone.
If I allow myself to think about what is happening in the wrong way—or at all really—there are tears. But not useful, get-it-all-out tears. They’re the pointless crappy ones that achieve nothing and just fill your nose with snot.
Also. I’m so fucking angry. I’m absolutely incandescent that my parents were promised free health care and then, at a point when it was too late for them to do anything about it or plan for alternatives, it was taken away. Oh I could rail against the Government, and NHS’s institutionalised discrimination against certain mental illnesses while it happily treats others but what’s the fucking point? I could write letters, I could write to my MP and get the usual boilerplate reply referring me to the statements she has made about the issues that most concern her on her website. She doesn’t even pretend to give a shit.
All it will get me is a sore throat or numb fingers. I could keep on asking the powers that be why, if two people have the exact same symptoms, one can be treated on the NHS for free and the other is forced to pay—not just their money but their house, possessions and everything they own, simply because their illness has a specific name. I could ask why people with dementia are taxed to the tune of all they own, unless they’re fortunate enough to die first. I could ask them if that’s just. Or right. Or building back better.
I suppose it might make me feel I’d made myself heard but I doubt it. Trying to do anything about it is like pissing in a wetsuit. Doubtless it will give me a nice warm feeling for a moment or two but it’ll make fuck all difference in the long run.
And I suppose it doesn’t help that we seem to have one of the most morally destitute bunch of stone-hearted cocksuckers ever to darken the doors of Parliament running this country right now. A bunch of feckless, misogynistic lounge lizards who also, unfortunately, appear to be completely teflon.
We have someone at the head of the nation who is an international joke and, possibly, one of the most unsympathetic and bone-headed premiers since Cromwell. Except, stone-hearted, empathy-free bastard that he might have been, at least Cromwell appears to have had some kind of moral compass and seems to have genuinely believed he was acting to help his people rather than just blatantly helping himself.
The present shower appear to pride themselves on having the kind of moral standards that make the Emperor Nero look like an exceedingly uptight nun.
Sorry, where was I?
Mum stuff and it being hard. I guess what makes it hard is that everything takes ages. Twenty minutes on hold, minimum, for a three minute telephone conversation. Then there’s the whole fact that we are mortgaging Mum’s house so we are basically gambling on how long she has to live. And we can only mortgage half so if she lives more than four and a half years, we’ll have to sell the house and move her into a home anyway.
I guess what I’m saying is that it is possible I need to do some serious self care.
If you are looking after someone with dementia, this is probably the point where you’re hoping I’m going to share some amazing coping mechanism with you, right? God in heaven! I wish I could. But to be honest there just isn’t one. I guess the almighty (who I’m also pissed off with about this) has just decided that the camel WILL through the eye of the needle and 50% of people over 70 will get gold plated entry into the Kingdom of God by din’t of a whistle stop visit to hell before they die. Going nuts and spending everything they own on care.
Seriously though, one of the things not writing my blog for a few weeks has taught me is that actually, it’s pretty vital I that write my blog. By venting all the anger and weirdness and tension on here I get to be effortlessly normal in the Real World.
Well. No. That’s not exactly true. Normality is always an effort but you get the picture I’m sure.
For example, having a Basil Fawlty style rant on here and will make people laugh. It might make them think and it might make them sympathetic but by making it funny and airing it here I can cut the sense of overwhelm I feel down to a manageable size. Laugh at it and it loses it’s power and all that.
Conversely, having a Basil Fawlty style rant in real life leads to awkward silences. I’m clearly not funny enough to carry it off face on. Or maybe I’m just too desperate and too angry. Like a young woman I saw on Live at the Apollo a few years ago who did a fabulous stand up routine about nursing her mother through cancer. It was so powerful, but it was also painfully raw and the audience looked like they wanted to hug her, not laugh.
Even worse, by not ranting it all out here, it spills out when I talk to Real People. Yes, I have fallen into a terrible habit. When people ask how I am, I’m fucking well going and telling them.
This is not good. This is so, so not good.
I do not want to turn into the kind of person people hide under parked cars to avoid. I don’t want to be the dear woman my mother used to hide in the coat cupboard from (she was lovely but she was enduring very tough times and she talked soooo much).
Am I there yet? I don’t fucking know! But I fear I’m perilously close. I’m going to meet up with some of my old school friends this week and I am actually quite nervous. I have lost so many friends by meeting them during a crisis after a long time apart and then being too intense, too weird and too chatty to the point where they quietly delete my details from their address books and move house.
A big part of the stress is that I’m appalling at this stuff. Seriously. In my 20s, I had an IQ of 149. One point off genius level. But the side of my brain for maths is … it’s so stupid. Brain 1 is sitting there looking on in complete incredulity as Brain 2 tries to understand compound interest. One side of the house is mercury quick, the other is like wading through semi congealed tar. It’s weird and frustrating and thank God McOther has agreed to attend the mortgage meetings with me so there is someone there to ask pertinent questions and understand it all straight off.
Then there’s a fair bit of guilt. One of the things that cropped up, doing all of this, was how badly I’ve taken my eye off the ball. I confess that while Mum was reasonably well and not deteriorating as much, I kind of let things slide. I wrote stuff and did things with my spare time that normal people might do. IE nothing particularly looking-after-Mum related. She was very frail after Dad died, and although I knew that the Almighty is far too hell bent on crapping on us all from the stratosphere to do us the mercy of having Mum’s money outlast her, there were three years of it and logic said it should.
I really should have known. Again, it might be easier for us to pass a camel through the eye of a needle than to enter the kingdom of God but I’m sure that, with the help of a blender I could— yeh alright. Moving on.
Returning to my derelict duties I discovered that Mum’s payments from Dad’s work pension had stopped and that she is on the lower rate for one of her benefits when she should have been on the higher one since she started to need carers at night (April 2019).
On top of that, I realised that if the council tax definition of severely mentally impaired goes on levels of dementia alone, she should be eligible for a council tax disregard, which means her council tax payments are waived. As these are over three grand a year it seemed quite a good idea to get the forms for those and ask her Doctor if he was prepared to sign them. If he doesn’t, I am now at the point where I can safely say I’m spending over 35 hours a week on Mum and I will claim carer’s allowance with a clear conscience, instead, and bung some of that her way. (You can’t do both).
None of this is quick. Oh my goodness no. But I stayed on hold for the prerequisite 20 minute plus to each of the august bodies I was required to contact and got the forms sent out. In the case of the pension, although Mum had signed a chitty to say they could talk to me, it was too long ago. They gave me an email address to send my power of attorney to and then told me I’d have to wait 10 – 12 working days before it would be ‘on the system’ and I could ring to ask my question again, at which point, they assured me that they’d answer it. I put a note in my diary to ring on the magic day and relaxed knowing the forms would arrive at Mum’s while I was away and I could pick them up a couple of days after getting home.
But then I arrived home and discovered I had bastard COVID and I couldn’t get to Mum’s to pick the forms up before they expired.
Can you guess what happened next kids?
Urgh. Yes. That’s right. I had to phone them all again. I swear the Man has decided that the new way to keep us down will be to give us pointless shit to do, like sitting on hold for a fucking eternity to ask a question that is answered in about ten seconds.
So over the past couple of days I’ve been writing covering letters and filling in forms. In black ink and in capitals. Needless to say, I ballsed up the forms extensively but hey, Tippex is my friend. I sent one form to Mum’s for her to sign with instructions to the carers as to what they needed to add (her list of meds) and bless them, she signed the forms yesterday and they put them in the post. So that’s one job done that I’ve been meaning to get round to for several months.
Meanwhile at the beginning of the week, I sat down with the next round of paperwork the mortgage broker had sent, filled that in, decided how much we needed to borrow and sent it off.
Yesterday, I filled in the council tax form and sent it to Mum’s doctor, with an SAE to send it back if he signs it. Once that comes back to me I can send that on, or apply for carer’s allowance if he can’t sign without a pukka diagnosis. Mum is doing fine thinking her memory is crap. She can maintain the illusion that it isn’t dementia, even though she kind of knows it is. But if she formally hears she has it she’ll be undone. So I can’t get a diagnosis if she has to be told about it too, it’s too unkind.
Good news is, the fucking mountain of administriviatative shite is nearly all in the bag, except for signing up to the actual mortgage, which will require the services of a solicitor. Oh yes and getting rid of the last of Mum’s shares, which are in an old family firm but needs must. They have to go.
This is not the end, or even the beginning of the end but it is the end of the beginning for this particular period of intense Mum-based activity. Once we’ve got this bit done she’s set for another three or four years and it’s like I can see the end of the tunnel on this batch now, after which there will be a calm period.
Sure it will be horrible when the mortgage is spent and we have to sell the house and put her into a home, but there’s no point agonising over that until it happens. I guess what I’m saying is that, I should be able to write some more soon.
Talking about writing …
There is an outside chance I will finish the current W.I.P. this year. There are 102k words of it so far and I have a horrible feeling it’s going to be three books. I might be able to break it up into 50k instalments though. We are only half way through but it’ll need tightened up and when I’ve done that I suspect I’ll have three 50k instalments, two 85k novels or one absolute monster. As the other books are short but the first book featuring Goojan Spiced Sausage is also 85k I’m thinking two at that length would work really well. Otherwise one 50k and one 85k (if I can keep the prose spare enough) would also work with the some books short, some books long nature of the rest of the series.
Lastly, I’m thinking of entering Too Good To Be True for a sci-fi book award. The books have to be over 50k, a stand alone or a first in series. I’d be entering it as a stand alone. Unless it isn’t. Decisions decisions. The competition is adjudicated by sci-fi bloggers. They’ll probably hate it. They usually do. But what do I know?
Right. Until next week, that’s me … although it might be after next week, but it might not because I have to tell you about my pathetic efforts to do a calorie controlled diet and my new electric bike! Woot. I’m also thinking of doing a kickstarter to raise funds for the next book in the Hamgeean Misfit series, Starting at $10 but it gets all the other books too, or something like that. Let me know in the comments if you think that’s a good idea.
If you’re bored …
Why not try the audio box set of the K’Barthan Series from my shop with 30% off. If you’d like to give that a go, click on the link and type ARNOLD at checkout.
Alternatively, if you enjoyed the books and have the inclination, why not write a review of one of them. A list of them, with links to them on the main stores can be found here