LIFE UPDATE STUFF - LONG and HEAVY

So. An update on a few things that I know some of you are invested in…!

Firstly… the diet, so far, has been going fine. I’ve not struggled at all with it this week, and it feels like I’ve managed to flick the right switch in my head. Hopefully I’ll stick to it. I’ve noticed a big difference already, and it hasn’t even been a week. Probably all water retention, but hey – I’ll take it.

Other matters...

Alas, I barely got anything done this week in terms of Digi Level 2. I’ve had a long, long day job script I needed to get written, which took more time than I'd anticipated, but outside of that we’ve mostly been trying to deal with mum’s situation.

My sisters and I had a big meeting at the hospital at the start of the week, with the discharge team, Social Services, and my mum. It’s strange to think of my mum having her own Social Worker, because growing up we always had Social Workers in the house. Not because I was neglected! My mum fostered, and so we had a revolving door of kids coming in and out. Some were brief, others stayed forever.

Anyway. Given the complex nature of the care my mum needs, it was suggested to us that she have a 24hr live-in carer. That was the best they could offer, as the funds aren’t there to pay for her move to a nursing home. Neither my sisters nor I felt comfortable with that. The issue for my mum isn’t just her physical needs, it’s her emotional ones. We’ve done as much as we can since my dad died, but even that hasn’t been enough.

Putting it bluntly, my mum – much as I love her – has always been a bit of a bottomless pit, very needy, and an expert-level guilt-tripper.

Over the past couple of years, my sisters got it worse than I did – I know full well I’m Golden Boy, and can rarely put a foot wrong in her eyes – but she openly resented it when any of us would dare to do something that indicated we had a life of our own. Everything had to involve her, and if it didn’t… all hell broke loose. Remember our Lake District video? Yeah, she hated us going up there, and made sure Sanja and I paid for it for about a week after, even though we book-ended that trip by looking after her.

Consequently, even with us going in there at least three times a day, and taking her out at the weekends, she has still felt lonely and neglected. We all felt that a nursing home – where she not only has her physical care met – with its activities, and all meals done for her, is what she really needs. 

And what we need, frankly.

BUT... MONEY!

My mum has a small pot of savings left by my dad, and a decent pension. Basically, if you have more than £23,000 a nursing home will take that to pay for the care, along with any pension income.

But… we HAVE found a lovely nursing home very close to us that is prepared to take her in, and they will immediately apply for funding, so that once my mum’s savings hit the threshold – which won’t be long, admittedly – that will hopefully kick in.

I don’t doubt we’ll have a battle on our hands at that point, but the home promises they won’t just boot her out.  Plus, they can’t take her house at least, because it’s owned jointly between my mum, myself, and my sisters.

I don’t know why that funding model is a better option than having her care funded from the start, but we’ll work with what we have. 

GUILT-TRIP

I think we’re all feeling guilty though. We know my mum would prefer to go home, but she’s no longer safe there. When I went in there six weeks ago, to find her delirious, weak and confused, I knew it couldn’t go on.

She ended up falling over three times while I was there that night. It was bloody awful, but that was me hitting my limit. She has steadfastly refused to move, but something broke in me, and I could no longer let her live there in good conscience.   

Between us we’ve spent over 18 months trying to give her what she says she needs, but it has felt like a losing battle. As it turns out, whatever happened to her then, she hasn’t been right since anyway. Though she’s physically stronger than when she first went into hospital, she remains confused, she’s still seeing things, and imagining things. It’s hard to witness, but weirdly it has made it easier when it comes to the next steps.

During the meeting the other day, I realised how exhausted I am. Just so physically and emotionally drained. So, so empty. The last 18 months have been tough, but for several years even before we lost him we were having to deal with my dad’s myriad issues. 

He found the final few years of his life incredibly difficult. He was suffering emotionally – breaking down and crying a lot, and he and mum were fighting furiously, all the time, with the rest of us caught in the middle of it all.

At 86 he decided he wanted to leave her. It was just brutal. He was on steroids for his prostate cancer and they seemed to affect his mood. Plus, he’d had a catheter fitted, which he hated – not least because it was constantly getting blocked. He felt it made him a prisoner.

At least once a week, I’d get a call in the middle of the night, or the early hours of the morning, to take him to A&E, because he was in excruciating pain. I ended up with constant anxiety, because I was always braced for the next call. Either to deal with another emotional breakdown, or because I was expected to spend hours up the hospital once again.

The catheter changes terrified him, and he always wanted me there. He said it was because he was hard of hearing, but really I think he just needed the emotional support, because he was so deeply scared.

He was a bad patient, to say the least. He always had been, but those catheter changes were on another level. Screaming. I mean, literal screaming, and hitting himself in the head, and afterwards he’d always say “It’s never as bad as I expect it to be”, and I’d think “Thanks very much”.

It was properly mental, and I found it so traumatic seeing him behave like that (and I’ve not even mentioned the time I got covered in his piss). I would always come back from the hospital shaking. And this was weekly, pretty much. I’m pretty sure I’m not over it yet, and I have lasting damage from those trips.

BURSTING

So, it’s kind of little wonder that in the meeting at the hospital the other day I had to stop myself bursting into tears. It was the first time I’ve properly admitted – in front of my mum – how exhausted I am, and the first time I’ve admitted to myself how I’ve neglected my own self-care now for years, to try and make her happy and comfortable. It felt cathartic.

My own life has come to feel like these snatched moments – like quickly wolfing down snacks, because I don’t know where the next meal is coming from – in-between the next parental drama. There’s been no time to focus on the rest of our family, or our own problems, because theirs have been all-consuming. It's part of why we've struggled with money in recent years, because I never have enough time to work. I've basically been working three-day weeks for 18 months, if not longer, while working part-time as a carer.

I don’t know if all parents get like this, but it has been extraordinary how tough it has been on me, my sisters, Sanja… all of us.

The guilt is what drives you on. The fear of them hurting themselves, of being lonely, or scared, or angry. It’s constant background noise, a hum of anxiety and worry that never goes away. But amid all that, I think we’ve all sort of lost sight of ourselves, and what we need.

I’ve lost so many work days to it all, I’ve not seen most of my kids since Christmas… I hate how long Digi Level 2 has taken, but it’s a miracle we got any content out at all. It has been too much, for too long. A fucking nightmare few years.

But… tomorrow she’s moving into her new nursing home. I don’t know if she knows she isn’t ever going home, but we’re heading up there this evening to make her room more cosy, taking some things from her house so that she feels more at home. Then tomorrow I’ll get from hospital and take her there.

I don’t doubt we’re still going to have battles ahead – with her, and when it comes to the funding of her ongoing care – but we’re all hoping that at least there’s a glimmer that we might, finally, start clawing back some of our life, and make sense of it all. A hope she will settle there, and come to like it.

This does mean, of course, the promised Writer’s Club Zoom won’t happen tonight. Sorry. I’d move it to Sunday, but we’re babysitting again this weekend. Hopefully next week – and subsequent weeks – will be different, and that when we commit to something in future we’ll at last be able to stick to it. Sorry again. I’ll update you after the weekend.

Paul