Two And A Half Years On

Obligatory recap:
When my mum first came here - at the end of June 2018 - after a nine and a half week stay in hospital I very much thought she was coming here to die. In all honesty we hadn't been at all convinced she would even get out of hospital.

Before her stroke my mum, then 73, was getting visibly frailer. She was greyer, more wrinkled, shrinking. The day before I had actually sobbed on my daughter's shoulder that I didn't think we'd have her for much longer. 

That said, she was still living independently, driving considerable distances although she spent more of her time at her partner's house than her own flat for sheer convenience.

Her stroke was described as 'severe'. There's no classification system like stages of cancer that allow you to understand where your loved one is on a broad spectrum that ranges from quick recovery at one end to things such as permanent paralysis, coma and death at the other.

My mum went from moderately healthy and active (type 2 diabetes and advancing age) to completely dependent. And it was a massive shock to us.

Her father had suffered a large stroke when I was a kid. We all agreed his quality of life had been crap yet somehow he lived another 16 or so years. Mum's situation was so much worse it was no wonder we expected her to go imminently.

Anyway, that first year she was home I felt like I was on tenterhooks. Every time she nodded off in front of the TV I'd check she was still breathing. If I woke up before her I'd be terrified she'd died in the night. NOT, I might add, because I am *scared* of her dying so much as it's a new experience I know will be very unpleasant.

I know I've blogged about all this before so I've tried to be concise.

We've recently passed the 2.5 years mark since her stroke and we're also just past the 2 years 4 months since she came to live out her days in the care of her only child - muggins here. And the pressing thing is... how wrong I was back then.

Not only did was she clearly NOT on her last legs, as evidenced by her continued survival, but - and this is the bit I'm especially struggling with - SHE WASN'T ACTUALLY THAT BAD.

Badness is a thing you can only appreciate by contrast. Mid 2018 was BAD. I did not make a bad call in declaring it bad. It was absolutely the most horrific experience... until you experience WORSE.

Worse is decidedly where we are now and I have an uncomfortable awareness that further degrees of badness are both possible and probable.

When my mum first came here she was so catastrophically not the person she had been that it was difficult to see the blessings. With hindsight, and loss, they're clearer. That's where I'm at now - realising how much more of her we've lost, especially since what was probably another big stroke right at the start of lockdown.

Memory - she remembered lots of past things although she had an unfortunate mental block on her partner's name.
Her memory is far worse now. She blanks lots of things, and far more names. She rarely reminisces.

Personality - back then she was still pretty much herself.
Now her principal remaining characteristic is a stubborn streak a mile wide.

Intelligence - my mum's never had an IQ test and her parents made her leave school at 16 but she's a seriously smart lady. There's something kind of hilarious about a stroke survivor who can't remember the name of her partner but can spell obscure words, correct grammar and yell abuse at someone misusing French on TV.
Some of it's still in there but we see less and less of it. She still uses some rather impressive words at times.

Speech - we adjusted to the new sound of her voice quite slowly.
She just passed her 76th birthday (whodathunkit?!) and she had three phone calls - each person said how good her speech was... yeah, it's not like that real world. Her speech is very difficult to understand now, even though I'm with her full-time I struggle. I've started her on drink thickener too which is indicative of deterioration. Gotta try to persuade our not-so-with-it GP to put it on her prescription next.

Mobility - it didn't bother me seeing my mum using a walking frame. I was all in favour for the stability, as was she. The hospital physios had wanted her to try for sticks but my mum has ALWAYS been pro-frame. She first used one in her 50s when she suffered a broken ankle & DVT. Safety was always a higher priority to her than appearances. She would walk to the loo on her own... from the living room. She would get up to the loo on her own in the night.
She can't get up from a chair without assistance now, let alone out of bed. It must be a good year and a half since she went to the loo on her own and forget walking the length of the house! These days she never moves anywhere without at least one person HANDS ON.

She used to come and sit in the living room to watch TV although it drove me nuts that I was expected to watch endless Midsummer Murders repeats when I don't even enjoy watching TV; now she hardly leaves her room... which at least means I can get stuff done from time to time. She sleeps a LOT more.

Old age is not beautiful. It is grim.

So Slow

Not to blow my own trumpet but I have a few smarts. My IQ has been certified at a respectable 137 and I'm a graduate. But I'll be the first to admit I've never been quick on the uptake.

Tonight my mum was watching 'The Adventure of the Egyptian Tomb' on TV. I own it on DVD and heaven knows how many times I've seen it since it was made back in 1993...but it was only last year that I finally got what Hastings was on about when he was telling Poirot about Miss Lemon's late cat "the one she called Catherine-the-great because it liked to sleep in the fireplace". Yes, I am very ashamed of myself and embarrassed to admit it. In my defence I'm not exactly super familiar with fireplace grates.

Anyway, this blog is another thing that happened tonight.

I'd gone out for a bit of air, walking down to the closest Pokestop and Pokegym and I was listening to Ashestoangels (hereafter A2A) on my phone.

My cousin Allister died of Primary Brain Lymphoma in April 2016 and there are THREE A2A songs that get me in the feels about that - Ugly Club which made me do the ugly cry at a gig just days after I heard the diagnosis, then two tracks that I got stuck in a loop of playing in the week or so before he died: Bound And Broken, and Ghost In The Machine.

So Ghost In The Machine comes on which particularly makes me think of Allister's partner Michaela. I had huge empathy for her anyway but after the funeral I was lurking to offer the usual stock phrases of sympathy as is only right and proper when my daughter and I overheard her tell another mourner that her father had died of the exact same thing at just one year difference in age.

This reminded me that earlier today I saw Michaela post on Facebook - November 7th was Allister's birthday (at the time of typing it's past midnight).

I also get to thinking about how my mum phoned me to tell me the news.

When I first moved to Taunton in 1997 I got my first ever phone. I started at the neon UFO shaped thing plugged into the wall and realised that some day soon I would take the first of some damn difficult phone calls. As it happened the first was in October 2000, in a different house on a different number and on a different handset. That was when my grandad died. I didn't get a call about my grandma because I had phoned home at an inopportune moment. There must've been calls about more distant relatives, my auntie Kitty for whom my youngest is named, but they were older and expected. it makes a bit of a difference.

The first really difficult phone call wasn't until Oct 2014. My mum didn't sound herself on the phone, I barely recognised her voice. I was just thinking "this reminds me of when my grandad died" when she started crying and I realised...
Me: "OMG, who?"
Mum: "It's Sean"
Me: *LITERALLY DUMBFOUNDED*
Mum: "Your cousin?"
Yeah mum, I know who you meant but...he was 49. He died doing what he loved which was riding his motorbike. My only memory of his wedding back in 1987 was him and his bride sitting on his bike for photos outside the church.

In comparison we knew Allister was going, it was just a matter of waiting for the news. Around the beginning of April we (meaning my mum, my dad and I) stopped phoning each other. We didn't discuss it. We just didn't. Incidentally I tweeted a prediction on April 1st of the 21st. I've blogged about this before and I know it's super vague - the follow on about the odds changing re: the 25th is A2A related - being my next date to see them live. April 21st 2015 was when I saw A2A right after hearing Allister's diagnosis; April 25th 2016 was my next gig date to see them.

As the 21st got closer I started checking Facebook obsessively for any hint from Michaela. By the 21st I was an absolute wreck. At around 7pm I'd been sitting at my PC and had just got up to go to the loo. The phone rang, I misstepped, trod on a plastic tray and broke it. I swore comprehensively at the phone. I was fighting back tears when I picked up the receiver.

So tonight I was thinking about taking that call, the call about Sean, Kitty, my grandad...and I realised that not only am I never getting another call from my mum (as she is a stroke survivor living with me) but that I am now pretty the adult for my branch of the family who other people will call with the bad news (my dad doesn't have a whole lot of family and it's not exactly clear if anyone'd bother contacting him anyways).

For some reason this hit me pretty hard.

Worse still was the realisation that THIS SITUATION HAS ALREADY HAPPENED.

My mother's brother in law, my Uncle Dave, died on October 11th following a long illness from myelodysplastic syndrome (a rare blood cancer). Although, as it's now 2019 I actually received the message via Facebook rather than an actual call. I had to tell my mum, rather than the other way about.

Unusually for me I just went through it without clocking the reversal in roles. 

Tonight it hit me. Not only that it is me that is moving up the pecking-order of adulting around here but the shock that I'd just dealt with it when it came up without really clocking it. 

When Sean and Allister died I wanted death to hit my parents' generation next as might be considered the natural order of things. I'm the youngest of my generation but it's too close for comfort. Dave, on the other hand, was 80. And now we're in that phase, of losing that generation, I feel old. 

I am perfectly aware of my age, my 'kids' are in their 20s so I probably have a better awareness of where I stand than a lot of people in my age bracket. Indeed, another cousin has a kid who is just 5.5 years younger than me...and her kids are a preschooler and a newborn! By the time I'm a grandma, or certainly by the time my future grandkids are old enough to remember, it's unlikely there'll be any of the old-guard left standing. Time marches on and all that but it's the realisation that goes with it.

I didn't have any greatgrandparents alive when I was a kid - I doubt anyone of their generation was still around. My mum's parents had her late, she had me fairly late...I guess somewhere along the line I just assumed that by being a teen mum it'd go some way to redressing the balance. Tonight it struck me that it's really unlikely. My kids probably won't have kids for another decade...and in all honesty I think my generation, already depleted, will be the oldest by then.

Deaths of 2019

Gwendoline J, nee Beckett (94/95)

Last surviving aunt of my father - no biographical details.

Left the UK decades ago.

Serena Cheong (34)

Missed by her parents Solomon & Cecelia, sister Sharon, brother Michael, sister in law Kelly

and the Blockhead Sisterhood worldwide.

Michael Barter (82/83)*

No close kin.

* not only do I not know his date of birth but no one knows when he died. Whatever's on his certificate is a guestimate.

Dave Rowlands (80)

Missed by his widow Margaret; daughters Terrie, Dawn Paula and Shirley;

grandchildren David, Hannah. Luke, Matthew, Geraldine, Sabrina,

Hopey, Isaac, Jacob, Shirley, Elijah;

great-grandchildren Evelyn, Henry, Rafe, Max, Lazarus, Ezra, Delilah and Selena