Dementia too, because obviously dementia once wasn’t shit enough

Yeh, I selected that heading from Whiny Titles R-Us but it does sum up the way I felt at the start of this week and the feeling I’m trying to describe.

The slough of despond; rain and yellow lines …

Bits of this week have been tough. I’ve had a couple of down days, mainly because I suspect I have had a mild UTI but also it’s the time of the month when I can’t remember my own name without cue cards. Worse, I’d forgotten to put the morning HRT gel on for two days running and that does make a difference. The traffic is back to normal so there has been the usual 40 minute delay along the bottom of the M25 on the way to Mum’s. This last two weeks, the journey time is back to three hours down and two and a half back, so long as I am on the road at half two sharp.

Worse, I’ve been finding it really hard engage with Real Life. To care about the little things that other people need me to care about. Silly stuff. McMini’s bedroom curtains need hemming but it’s difficult to do that while he’s in there with them attending his virtual lessons. It’s the last day today, so that’s fine, I can do it tomorrow, but it’s been a long time and both he and McOther have been eyeing them impatiently. Meanwhile, McOther has a favourite beanbag. The material is completely rotten and sewing it up is a thankless task that I have to repeat every three weeks or so, unless he does it. It’s bust again and so the choice of thankless tasks was twofold: try to get him to understand that the material is rotten, which, itself is a hiding to nothing. Or I fix it again when I know it will break in a few weeks. But fixing it is a duty of love, so perhaps it’s a bit less pointless than it seems. Quietly, without saying so, I know McOther feels unloved if I say I’ll fix it and then take ages to deliver. It’s not good to feel so meh I can’t do anything. More on that story later.

This Wednesday, then, I was not in the right place to drive 288 miles, not even in a Lotus. I felt unbelievably meh. I was teary about the state of Mum, teary about the state of myself and feeling miserable. Then the radio proceeded to play some of my favourite songs. Things which are in my record collection but which I haven’t heard for ages because most of my music equipment assumes that anything I’ve ripped from my own CDs or vinyl is a pirate copy and refuses to play it.

Hearing all these songs again, it seemed that something out there in the ether was trying to tell me to cheer up. Finally one of my very favourite songs as a teenager; Big In Japan, by Alphaville came on. Despite being in very slow moving traffic jam, the gauntlet was thrown down. I was going to sing. I rolled up the windows so, in theory, nobody would hear me, jacked up the volume and joined in. This involved full on pop star style gurning and a selection of ridiculous hand actions, I kept going, even when everything started moving. There’s nothing like giving zero fucks to cheer yourself up, and it did, at least for long enough to realise what was wrong.

You see, lockdown was quite easy, it was like a little six week holiday from the administriviative  shit. I worried about Mum but I rang her every day and I didn’t have to go anywhere or organise anything except my books! I just hung out with the McOthers and sat around in the sun writing. Woot.

Pseudo lockdown is insanely difficult. All the admin has returned with a vengeance, except because of Covid19 it’s about six times harder to do all the things you should be able to do by making a phone call. It’s the hard bits out of Real Life plus extra duties of lockdown, like the calls. All the hassle but none of the convenience. I did manage to get the scan I was due at the hospital but now I need to try and get the cat some shots. As usual, every piece of admin which should involve nothing more than a phone call involves several, and a protracted, drawn out effort, posting things, sending things. Case in point, I’ve just stuffed up my chances of opening a Barnes and Noble vendor account by transposing two numbers in my bank account number. It’s gone into ‘pending’. Probably forever. I can’t change it and I know their help desk is offline until after covid. I think they’re the only site where I have to have a W8EN still too. Everyone else you can just add your tax number and it works. I don’t know much about it but I suspect I have to get another W8EN as mine’s probably expired. Sadly, I do know that this is a great deal more complicated than it was because Americans don’t really understand what a sole trader is.

Meanwhile Mum is still shielding so she can have a few people round but not everyone. The lady who cuts her toenails has started coming again. Yes, when you’re old and arthritic you can’t do that anymore and you have to have someone come and do it for you. The lovely lady who cuts her hair came and gave her an appropriately socially distanced ‘do’ this Wednesday as well.

However, a lot of her friends are shielding, too, or can’t come to see her because she is, so she’s still bored stupid. Hopefully, as the small things that structure her life return, like the hairdresser visiting and the foot lady, she’ll gradually be more grounded again. Just as Dad did, she thrives on social interaction. My fingers and toes are, therefore, crossed. Although I have to accept that there is no guarantee of this. Because I think the main source of my malaise this week was realising that Mum is going to take the same path as Dad. Her own version, but the same horrific journey into oblivion. And I’m going to have to walk beside her; because I love her, and because, if I want to be a decent human being, that’s what I must do.

Please do not feed the animals

As we take these first steps, I guess what struck me down, temporarily, was the renewal of that familiar pain. It still hurts. Even though I’ve done it before and I am aware of the cost. I should know by now. I should be strong. But I’m not. I really wonder if I have the courage to do this a second time. I don’t want her to die, I don’t want to lose her but I pray that she will enjoy a kindly easy passing before it gets too bad. Yet, at the same time, I know she won’t because that might actually be kind to all of us and God forbid that my family should be shown a scrap of mercy over this. Instead, it seems life brings whatever will cause the maximum amount of misery and pain to all of us. Sorry Mum.

I have wondered about consulting my doctor and seeing if some medication might be in order. The trouble is, I’m pretty certain that any kind of medication for depression will merely make me even more forgetful than I already am. And since three quarters of my insane frustration is with my inability to remember a single fucking thing for more than about two and a half seconds, I suspect it would be a bad idea. And anyway. I’m not depressed. I’m sad. There’s a huge difference. When Dad died, there was grief but the sadness went away. It was a liberation.

Now that Mum is showing more acute signs of dementia, it’s back. If you wanted to present me with the perfect storm of things I am shit at dealing with, there are parts of my life over the last eight years that would be an excellent fit. I can do level-headed, clear thought in a crisis. Yeh, I can do that. But long, slow, sustained suffering. No. Not very good at it to be honest.

As I sat there, singing in the car, I realised that I’d started to withdraw completely into inner space. I lost myself in K’Barth, where my characters were suffering but where, I knew, eventually, they would be OK. I made them suffer in the faint hope their pain would somehow alleviate my own. I gave them a happy ever after in the hope that maybe if I did that, I could have one. This is an approach which works really well for me, but, unfortunately, not for those around me. That was another cause of the misery, the misery I was inflicting on my very much loved McOthers. Withdrawing helps me but it hurts everyone else. Small doses then.

As I drove, something happened. I don’t know how, but something in me fixed it. The blinkers came up again and I saw what I needed to see. I saw what was there in Mum rather than what wasn’t there. I stopped seeing drudgery and saw small acts of love. And I remembered that I have done this before. And suddenly, I slipped into the coping strategy. Short bursts of activity. An hour at the computer and then half an hour doing something else around the house. Tiny steps. 10 minutes a day. Pigeon steps, inching forward one tiny step at a time. Lists. Lots of lists. Each project broken down into manageable tiny items which are ticked off as they are done.

Don’t be a … or maybe do be one … or work smarter not harder … or something.

Lockdown was a luxury. Lockdown afforded me big chunks of time in which to write. My work came on in leaps and bounds. But lockdown is over. I need to see the me time as brief moments of something else among the admin. I need to see life as peppered with acts of love, which is what the housework side of stuff really is. Except it’s a horrible phrase … very ‘putting out love and keeping it there’ but until I can think of something better it’ll have to do. And anyway, because it sounds like fake Oprah, it’s sort of funny and that helps. As for the worry about Mum and the trying to sort things out for her. I need to call all that something different too. Same thing? Ah why not?

Duty is a crushing, heavy suffocating word, calling it an act of love makes it feel a lot lighter.

It’s amazing how, always, always, always, holding onto your sanity is about how you look at what’s happening, how you frame it to yourself. That simple switch and I’m cheerful again, and reasonably happy. I feel the weight, for sure, but it’s lessened. Cognitive Behavioural Therapy, is a chuffing marvel. If you are struggling with anything heavy and millstone-like in your life, I urge you to look it up. I never cease to be amazed how I can actually do a PR/Propaganda job on myself. I know what I’m doing, I know I’m just putting a different slant on it, yet it works.

You may consign the coping strategies to the past when you don’t need them, but it’s slightly miraculous how quickly they came back when you do. I feel better, a lot better. To be honest, I still don’t really don’t know if I can do this a second time. But there’s no point in wondering. I swam through the dark waters with Dad and came out the other side. I’ll just have to take each stage as it comes, strike out into the void and give it my best shot.

_______________________

If you are feeling a bit meh, yourself, you could always pick up a good book! Indeed, if you’re feeling really lazy you don’t even have to read it. Choose one of the audiobooks and Gareth will do that for you. Indeed anyone who signs up for my audio mailing list gets two books free; Unlucky Dip and Night Swimming. That’s two hours of glorious K’Barthan lunacy for zero pence. Yep! Night Swimming comes later on, although I may switch it so it’s the story people get first. It’s just that suddenly I have very little time so for now it’s Unlucky Dip first, then a week or two and Night Swimming.

Anyway, Gareth played a blinder on both but the really lovely thing about it is that Unlucky was the first one he did and Night Swimming is his most recent. You get to see what he’s learned in the interim. So there you are, if do want a listen, just go here, sign up and they should both arrive in your inbox over the course of about three weeks: https://www.hamgee.co.uk/audio1fb.html

Unlucky Dip Audio Book


If you do join in, and it’s not obligatory or anything, but if you do, or if you have and there’s any stuff you want me to ask Gareth about how he did the recordings, let me know and I’ll ask him.

10 Comments

Filed under General Wittering

10 responses to “Dementia too, because obviously dementia once wasn’t shit enough

  1. Pat Allen

    You can get through it a second time and still be reasonably sane if I’m anything to go by. 2 sisters and a brother with dementia, a Niece with ovarian cancer, another Niece (the first one’s sister) with a brain tumour and a husband with a heart attack/throat cancer, all died in the last 2 years – my brother ?? due to covid – so a very demoralising send off for him, as well as no visits allowed for weeks prior to him dying. I’m still here – still functioning – so there is light at the end of the tunnel…… just hang on in there and send the miseries to us lot. Much love coming your way xxxx

  2. It’s really helpful that humans can only hold one thought in mind at a time, and that we remember we have a CHOICE as to what thought that might be.

    When it’s critical, of course we deal with the necessary.

    But when it’s our choice, there is nothing wrong, and much good, in choosing the best possible thought to hold onto. Yes, it’s objectively true that things aren’t as bad as they seem, but the proactive step of choosing something that makes us feel better is the antidote to depression – and no less realistic than choosing what would make us feel worse.

    Glad you found the sweet spot.

    You are literally doing the best that you can.

  3. Diana

    I agree with you that this transitional time of sort-of-open, but not really, is challenging. And I Iove the way you included us in the deep sadness as well as your thought processes and the way you stepped out of the depths — at least for now. May you continue in peace and both small and large joys, at home and elsewhere.
    And may your mum go gently when it is time.
    Be well!
    And thank you for sharing that lovely eye-bombed animal-in-cage.

    • Thanks, and thanks. And yeh, I’ve been meaning to do that eyebomb for ages but it was in someone’s garden so I had to sneak in, do it and scarper quick smart! 🤣🤣🤣

      Cheers

      MTM

  4. Love the eye-bomb! 🙂 … Your mum’s going to go through this Journey and you’re going to go with her, one way or t’other … so rolling the windows up and singing at the top of your voice was the bestest thing you could’ve done. 🙂

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.