Managing to stay alive and not do Something Stupid.
The finishing line.
I think I made it. The finishing line. It’s right in front of me.
Funeral is done, with an incredibly lovely cremation service. Friends of his from far and wide, including people from the taxi rank he used to be a part of, so many years ago. People I haven’t seen in donkey’s years. I was one of the coffin bearers…I’m honoured that the rest of the family were happy to let me do that under the circumstances. My brother has taken the ashes, and will look after them until we are all together again to scatter or bury.
My brother has been amazing. He has had to learn an incredible amount about me and my past in an almost painfully short space of time. And he’s handled it brilliantly. I have a big brother again. I told him today that I was sorry for his loss. I felt so sad for him. But even at the lowest, he’s been brilliant. We have similar histories, similar growing-up stories. We weren’t under the protective wing of our parents, so we made our own way through life. In different and similar ways, we learned the same lessons. Can tell the same stories, can relate to the same things.
Shouldn’t be that way, shouldn’t have to live that life…but we’re much richer for it.
The fact that he took the time to begin to understand the non-existent relationship with my dad, is the biggest breakthrough of my entire family. No one else did that.
He’s learned more about me in the last 3 months than anyone else has in the last 20 years. He’s learned stuff only The Mr knows.
He’s piecing together a lot of pieces. Anyone else would run scared, not listen. Many have done. More will do. He didn’t run. He pushed me away once or twice, but he was in his own pain. But he didn’t run. That’s amazing. I love my brother.
Never did I ever think I could say that and mean it.
All paper work is done. Today was dealing with the building society to close the account, and pay the rest of the funeral expenses. We will be having stern words with unprofessional behaviour of Co-op Funeral Services. A “courtesy call” to check that everything went ok yesterday, shouldn’t immediately be followed by (in the very same breath) “yeah so you still owe £1200, are you going to pay that now, or..?”
I broke down. Maintained the pleasantries, told her “thank you, please speak to my husband and it will be sorted, because I’m pretty certain there’s a mistake…” hung up the phone…and the sobbing started before I even knew what was happening.
That’s happened an awful lot over the last few weeks.
More times than I can remember.
My brother was there. I think, just having another human being there, made those vomit inducing moments slightly easier to bear. A sympathetic, yet very practical voice of reason. I can relate to that kind of voice. I don’t know what would have happened if he wasn’t there. He was brilliant.
I love my brother.
I have a big brother again. That feels good.
The Smalls broke up for half term today. Right now they’re eating their favourite Chinese food. Me? I have my bottle of prosecco, and the possibility of a straight night of sleep. First time in very nearly 3 months. I’ve averaged 3.5 hours a night. If I wasn’t so exhausted, I’d be proud.
But for 1.5 weeks, I don’t have to do anything. I’m shutting down. I don’t have a choice; my body will shut down anyway.
This whole episode, this chapter, this…this whole thing has been one of the sharpest, steepest learning curves I have ever endured. The emotional investment, the mental capacity for expenses and figures, the stability to manage the paperwork…I’ve never known anything like it.
I think I made it. And I think I did ok.
Four Ailments and A Funeral
I pretty much ploughed into what needed to be done, and have barely resurfaced into a normal life. Every time I stick my head above water, I choke.
Which didn’t make sense to me.
Surely I needed air? To breathe? To survive?
Quite literally, keeping my head down, and doing all the admin, and the funeral arrangements, and making sure everyone got what they wanted for the funeral (within financial and respectful reason) meant keeping my head down and getting on with it.
I noticed the illnesses whenever I tried to relax. First and foremost, it’s the lack of sleep. I fall asleep, at a reasonable hour, and then wake up, at a normal time, and wonder why I feel like I haven’t slept in approx. 14 years. I put my FitBit back on to monitor my sleep – turns out I was getting 3 hours a night. 7 hours in bed, up to 4 hours restless and/or awake. People suggested various forms of get-you-to-sleep methods.
Falling asleep is rarely the problem.
Staying asleep seems beyond me.
And of course it’s always accompanied by the most awesome and unpleasant dreams. Last nights dream included my left arm suddenly being covered in welts, which suddenly started to swell and split open and then my whole arm was bleeding over someone’s t-shirt, but it’s ok because I was on a plane going to New York.
I do love New York.
Closely followed by lack of sleep, quite understandably, is the nausea. Never actually being sick, just that constant desire to throw up everything I ever ate, everywhere. Food is a bit hit and miss. Crisps and tea makes a surprisingly sustainable diet, however.
Inevitably, migraines came back full force, too. I haven’t had regular migraines for a long time, so when they do come, I’m kinda laid back about them. They hurt like a motherfucker, but I can deal because I know it’ll be gone eventually and I won’t see another one for a long while.
HAHAHAHAH not this time.
Wave after wave of migraine after migraine.
Too many times I’ve had to ask The Mr to come home early, whilst wondering if I was even safe to pick up The Smalls from school, or stand in front of the oven and make something that looked like dinner. Migraines are asshole. Proper fucking assholes.
As if the pain itself isn’t bad enough, the fact that it takes days to recover is a frigging ball ache. I don’t have time to be feeling like I’m recovering from the flu (dealing with the fucking nausea).
Last week’s ailment was a new one. Extreme stomach cramps followed by trips to the bathroom. Ohhhhh deeeeeeeeep joooyyyyy.
I hate that the pain only comes on when I get super tense, usually talking about one of the things I pretty much don’t ever want to talk about again. It’s weird to think that a subject can take its toll so bad, that not only do you repel it mentally, but physically, too.
I feel incredibly and desperately broken.
The thought of turning to my “family” for help and support fills me with dread. The few times I’ve tried, has secured the belief that the backlash is never ever worth it.
So, tomorrow morning, we go to the crematorium. And do the funeral. And on Wednesday, I have to collect his ashes. And then, because no one has agreed to what they want doing with the ashes, I have to do that thing where life carries on as normal.
Everything goes back to the way it was, minus one person. Which shouldn’t make any difference, since I had no connection with that person. But I feel like I should anticipate a backlash, somewhere, somehow. And I don’t want it.
I’ve done everything I can to make this as easy as possible for the rest of the family, and for his friends…and I’m going to say this out loud for the first time, but…I don’t feel like I’ve gotten any respect for it. My brother, granted, and having spent time with me, has begun to come to understand what I’m trying to do to help. Since I’m pretty much the outsider (and no…no it’s not entirely through my choice, and no…no I did not push everyone else away), I figured the only thing I could do in a situation where I could do something, was make it easier for everyone else. Admin is a shitty job, but someone had to do it. I was in a position to do it. So I did.
It was the least I could do, I thought, at the time. Turns out, it was way more than I could ever have done, because I’m pretty much broken from doing it.
And after all is said and done, I’m writing this and thinking to myself, “where is my support? Where are the people who understand me? Where are those who are thankful, grateful, appreciative of all I’ve done?”
I hate when people do that thing where they’re all, “yeah, but look at what I did for you! I did so much, I wasn’t even asked!” It seems so pathetic, so overly dramatic, so needy, and yet here I am, doing it myself. We all have needs.
I’m tired of being tired. I have lost track of how many times I’ve said that over the last few months.
I keep thinking this horrible nightmare, which replays itself over and over and over, in my head, a million times a day…I keep wondering when will it end. I hope it ends soon. I don’t think it really will.
Yeah but he’s still your dad, right?
I don’t know how many times I’ve heard those words, or variations of, in the last 20 years.
Lately, it’s progressed to “Ohhhh well at least you’re getting to spend quality time with your dad, right?”
Every single time I hear these words, I feel like I have no choice but to nod, dumbly, and pretend that everything’s ok. I have to pretend that, yeah, sure! He’s so precious to me right now.
He’s not precious to me.
He never has been.
Sadly, now, he never will be.
Do I feel guilty?
No. Because I came to terms with this about 18 years ago.
It drives me nuts because there seems to be this thing where suddenly,completely out of the blue, I’m supposed to forge this amazing loving, father-daughter relationship out of nowhere. With a complete stranger. And I do mean, complete stranger. Considering he’s my father, he knows pretty much nothing about me. There’s so much of my childhood (read: all of it) in which he had no connection with me, or with anything I did. We were strangers to each other. There was nothing.
NO. THING. AT. ALL.
He’s a stranger to me. We have beliefs from other ends of the solar system. In a bajillion ways, he is the polar opposite to me. And after many years of being forced (forced…) to see things his way, he never saw the life I lived.
Which is weird for that to happen, when two people live in the same house.
It’s also a shame, because you know, he’s still my dad, right?
I’m not angry about how we turned out. I have no hard feelings, and I don’t hate him or whatever for the way he treated me as a kid. However I do hate what I’m being put through now.
Being made to feel like I failed at “keeping the family together”, being made to feel guilty (intentionally or otherwise) for staying in touch with him (forgive me for asking, but…conversation is a two-way thing, right?). I hate all of that, and I hate all the assumptions that go along with the current situation.
But the toughest part? It has got to be the assumption that I want to “spend quality time and share final precious memories” with him.
Nope. I don’t want to do that at all, actually. In fact, what I want right now is for this horrible nightmare to be over. I want to stop being made to scratch at wounds and scars which healed and faded a million years ago. I want to stop feeling like I failed somehow, even though I’ve done nothing but bust my backside non-stop for the last however many weeks/months.
I don’t hate him. I’m wary of him, for so many current reasons. But I don’t hate him. Because I don’t know who the fuck he is. He doesn’t know who the fuck I am. Currently I feel sad because in the times I have been to visit him, particularly during the last 6-ish weeks, he still hasn’t made any effort to know me. And what’s even more sad is it’s partly because he doesn’t know how. I always thought, as a kid, I was the “weird” one of the family. My friends were different, I stressed slightly unusually (black goths weren’t exactly popular back in the 80s/90s…) and I did things which…weren’t exactly typical of a teenage black girl (cello playing, bell ringing, bmx biking, cider drinking goth, with blue and purple hair? Yeah…huh…)
Looking back, it was always going to be one of those “relationships” which was a complete non-starter. It took me a while to get over that, or at least get used to that, but I got there. Eventually. To be fair, he made it easier in many, many unfortunate ways.
On one of our many looong and busy round trips from home to hospital to flat, my older brother asked me why I’m doing what I’m doing. Why am I giving up so much of my time? Why am I making such an effort? He lives in Sheffield, and is immensely frustrated that he can’t be here to help more. The answer, to me was very clear from my point of view. They’re not all great answers, but they’re what I think and feel.
I might not see him as my dad (and I actually prefer to call him Mr L—–y), but he’s still another human being, whom I’m related to whether I like it or not. If I cared for him like someone who had been my dad, then sure, maybe I’d do the hand holding, and head stroking, and hugs when he cries and stuff.
But I don’t. Because I can’t.
Sometimes I wonder if what I’m feeling and how I’m dealing is the same way nurses do it. Show the necessary outward emotions because they’re dealing with human beings, but don’t get too close because it’s still just another patient.
I also do as much as I do because no one else can, right now. All the paperwork has been signed over to me, because I’m the closest sibling mature enough to deal with it all.
Last week, after picking up his paperwork, I was AMAZED at how I actually managed to figure it all out. And writing appropriate legal-ish letters, to be signed by Mr L, was pretty straightforward. I hereby elect J Mountford to be executor of my estate.
It was weird writing those letters; I thought I should feel more emotion, but I pretty much felt nothing. How could I possibly feel more? Everything has become so matter-of-fact for me, now. I know that makes my brother uncomfortable, though he’s being amazing in understanding where I’m coming from. My younger sister, however, probably despises my very core.
I hope one day she might actually be ready to listen to what she needs to hear.
I think, sometimes, perhaps I was the one who was meant to deal with the formal side of all of this. The rest of my family members struggle, understandably for many emotional reasons. It seems only fair that, since I can sort of deal with what’s happening with a reasonable level head, that I should do the paperwork.
It was still pretty tough getting Mr L into the nursing home, and then filling in 8 sheets of paperwork, asking about his daily routines. That was…frustratingly odd. It was a firm reminder that I was filling this stuff in for a stranger. but at least I was getting shit done.
My head hurts.
I’m having regular dizzy spells now, and I’m stupidly (blindly? Hah!) ignoring them. I have to keep going, because everything keeps going.
But some days…some days I want to go around with a sign that says “yeah, but he’s not my dad, you know?”
I wish all of this bullshit was easier somehow.
Standing in his flat right now, to collect all of his paperwork and his suit which he wants when he goes.
The flat now smells old…dusty…stale smoke. It’s eerily quiet even though the electrics are humming.
I forgot to ale a list of all the things I need to do, so now I’m just walking from room to room…”learning”. Finding out more about him, I guess.
There’s a clock ticking, and it’s really fucking loud. Too loud. For such a tiny clock.
In his wardrobe are a bunch of suits. I can see his suit jacket which he wore on his wedding day, maybe 40 years ago.
They divorced when I was 18 I think. Or 19. I don’t know. That time is a blur. I was ill.
The smell bothers me.
It’s not a bad smell. I just don’t like it. I suspect I’ll remember this smell.
I’ve taken some of the suits out, trying to figure out which one he wanted. I can’t ask him now, because he’ll accuse me of trying to kill him, and that I’ve taken the nurses side. And then he’ll start crying again, and I don’t want to cause that.
Not any more than I already have. Maybe I’ll just take a couple of the suits. Maybe the ones which seem to be most appropriate.
I put back the black one. And the beige one. It’s hideous. Actually I’ve just taken a closer look; I’m not even sure beige is the right word.
It’s 1972, is what it is.
There’s the grey pin-stripe suit. I think it’s that one. I’m certain. It has a waistcoat and everything. It’s really smart. He wore it to my granddad’s funeral last year. I wonder if he knew he might be buried in it some 18 months later.
He has 3 months left. Apparently. At best. I saw him yesterday, and the oncology team, and the consultants. He’s not eating much now, he’s too scared to, because he says it’s just easier to die, and then the nurses can’t kill him.
Night terrors are a bastard. Nightmares are a whole different thing. Night terrors…he has no idea if he’s awake or asleep. So now, whilst cancer eats at his body, his own mind eats away at his soul.
The morphine hallucinations don’t help either.
I wish the clock wasn’t so loud, how the hell did he sleep here?
I’ve put the other suits back. Shit. I need to find a shirt. Rummaging through the shirts I catch myself thinking “no…not that one…he’ll never be comfy in that one…will this one decompose easily? No, this one has no cufflinks…”
I don’t understand my thoughts these days, so I have to just let whatever wants to flow, flow. It’s easier that way.
I hate some of the thoughts. Some are vile. Some betray me. But I can’t stop the thoughts.
I’m giving up on the shirts for now.
Looking through the cupboards in the kitchen, and laughing to myself as I see plates, cups, bowls, pots, pans and more, all from my childhood. A mountain of plastic food tubs are balanced in a corner.
I meant to bring my camera.
I’m glad I didn’t bring my camera.
Condensed milk and evaporated milk fill a corner of one of the cupboards. He and my brother LIVE on that stuff. I couldn’t stomach it as a kid. Never tried it since. The smell of Tetley’s tea bags fills my nose.
On top of the microwave are tubs and bags filled with seeds. No doubt ready to plant for the winter, ready for next year. I can hear him lecturing me again on how to grow stuff. He never knew I already grew all kinds of stuff for many years.
Fridge has cans of ginger beer and nourishment, tubs of green peppers and scotch bonnet peppers, and a couple of bottles of fizzy pop. There’s a mug of what looks like oil, at the bottom.
The fridge is so loud. And so is that clock.
Walked into a tiny room above the stairs and I’ve just stopped in my tracks as I peek round the corner.
There’s a small stack of books. I recognise them all immediately.
Theres a green one, which I can just see, and on its spine I can see the words Dean & Son Ltd. I know this book without taking another step.
“Hello Mr Twiddle”
I read this book over a thousand times as a kid.
I’ve picked it up.
It’s the very same one, the one I thought I had lost when my parents split up. Haven’t seen it since then.
I feel really sick. Have done for days now.
There’s a Cannon & Ball annual (1983) and badly repaired Dandy book (1984). They belong to my brother. I’ll take them for him.
He may not remember them. I do.
I put the other books back.
My mind wanders fleetingly to the shirts on the bed.
I spy a massive silver wooden box. It’s full of vinyl records. This is the treasure. I know that there are records in there dating back to (I think) the late 60s.
I’m looking at the size of it right now, and know that I can’t move this on my own. It’s a two person job. I know there are more records here, in wooden boxes. I know where they all are; he told me. Before he started going crazy.
I need to pick up speed now; I’m conscious that I need to do the school run. It will take me 35mins to get home, and another 20 mins to get to school early enough.
I should call one of the moms.
I can’t call anyone.
I’m weirdly silenced right now. Perhaps I’m just tired. I’ve had to talk a lot the last few days.
Should have written that list.
I can hear people, family members, reminding me of the things I need to do. Bank…building society…life insurance…policies…will.
dancing through my head.
So many records.
So much paperwork.
I’m glad I have my backpack with me.
Paperwork into carrier bags. That’ll do. Picked up speed now.
There’s a guitar on top of the wardrobe. Acoustic. He used to be in a band before I was born. I don’t know if he ever played this guitar. It’s badly out of tune.
Rummaging through drawers. I feel sick. The smell is clinging to me and I keep bumping into his Zimmer frame. He used it maybe 5 times. It was all so quick.
I should move it.
I find his life policy stuff and pull it out. A photo, printed onto paper and placed into a plastic wallet, comes out with it. It’s a photo of The Mr and I, with Big Small, aged maybe 3 months. I remember the photo shot very well.
And now I’m laughing at myself as I remember my constant nagging of people to print their bloody photos already.
No one cares about photos.
I care about photos. There are photos of us, the “kids”, dotted around the flat. Hahah actual laughter now; on top of the wardrobe is the battered suitcase I took when I went to Jamaica back in 1987…’86? I was caught in hurricane Gilbert. My parents and siblings were at home; I was staying with my Granddad. I flew home by myself. I think is was maybe 7 or 8.
Given up on the shirt. I’ve shoved them all away. I’ll buy him one if I get enough money in time.
Big old briefcase.
I already know what’s in it.
I’ve opened it, pulled out a framed drawing, put it back and then closed it.
I put it by the stairs.
So many records.
Back to the bedroom to pick up the suit. Put it by the stairs. I notice my hands are dry and feel strange, the way they feel after I’ve handled a lot of old dusty things.
It’s only been a month. He’s not dead yet.
I look at the plant and wonder if I should water it.
I see more and water them all.
Spied more records. Another box.
Head hurts. Migraine.
11:30 now. I’ve been here an hour. Feels like days.
Forgot to water the kitchen plants.
Holy shit! I’ve just found a clock from the house where I grew up! It’s gold and reminds me of the sun. Though now, 30 years later, it’s more like a star.
I’ve taken a photo of it.
Don’t know why.
need to go. Head hurts. Feel sick. Head HURTS.
I loved that clock.
Another cupboard. More records.
I change my mind about dealing with the records now. Just paperwork today.
Last look in the lounge.
Photos of The Smalls, and my nephew and niece.
His biggest regret is that he won’t see them grow up. He told me a few weeks ago, before bursting into tears.
Put the guitar back on top of the wardrobe, put the chair back.
Turn off the lights.
Turn off the power.
Time to go now.
And this is just the beginning…
On top of that, he’s pretty much unable to move his right leg, and regularly has the shakes in his right arm. Either the lump on his brain and/or the lesions on his spine are deteriorating his mobility on his right hand side. Watching him eat his jacket potato yesterday, he dropped his spoon way too many times.
The nurses told me on the phone last night that I needed to speak to him, urgently. I phoned him, and he was crying.
“J….I woke up…and I was dead…I couldn’t move anything and it was all dark…and I was dead and I couldn’t open my eyes…and then the nurses….all the nurses were standing there laughing at me…I called them but no one would help me…”
I couldn’t go to him. I couldn’t drive, because I had had a drink.
I did whatever I could to console him over the phone – I don’t remember much of what I said, though The Mr tells me I said exactly the right things – and then called the nurses back to see what action could be taken, or at least find out why he’s hallucinating.
(Mental note – I’ve just consumed an entire packet of Cheese and ‘Oh-So’ Onion Ringos, large bag, with one hand, in the time it’s taken me to type the above. And I speed type.)
Of course, at this stage it’s the morphine which is causing him to hallucinate. 50mg a day, as well as boosters before he needs to move for anything. At the moment, he can sit up for approx 2 minutes, before extreme pain in his legs and back means that he has to lie down again. Whilst on 10mg, he could sit up for approx 30-45 seconds. Which was pushing it. He needs to sit up to eat…and it’s taking him so long to eat, he gets pissed off because he has to go up and down in his bed so much.
I’d be pissed too. No one needs that kinda bullshit when you just want to eat your food.
I have no idea what I’m typing right now, and nothing is in order, because my brain keeps throwing this information at me and I can’t always keep track and/or make sense.
He can’t do it either. He got cross on Thursday because the ward doctors keep asking him questions and telling him information (to varying degrees) which is an overload for him, and causing serious confusion. (Including, they’re going to operate on him, they’re going to give him radiotherapy, they’re going to get him walking and many more things, despite not having the results from the oncology team as yet. Yeah…that’s not going to help a 77 year old who is now struggling to keep track of what fucking day it is. Every day is the same when you’re in hospital.)
He’s become increasingly paranoid, and his forgetfulness kicked it up a proper notch.
I took him some curried goat on Thursday, which he inhaled at lightning speed with some rice. He ate the rest of it that evening with a jacket potato.
Friday I went in with some chicken soup, and he was telling me about the curried goat…which L (my sister’s partner) took in. Apparently, L brought it in and sat with him whilst he ate it…with some rice. And then he ate the rest with a jacket potato.
I had a horrible fleeting moment of guilt last night when I realised that, not only could I NOT go in to the hospital because I had been drinking, but that I also DIDN’T want to go in because I couldn’t face what I would find. I still have no connection with him, and it’s getting harder and harder as time goes by and he still recognises me, to pretend that there IS a connection.
(There is no connection. He knows NOTHING about me. He doesn’t even know that I spent a week in the mental health care home, right across the road from where I walk into the hospital to visit him. I got put in there 15 years ago when I repeatedly tried to take my own life.)
I’ve lived with an alcoholic. It was pretty fucking terrifying, not because he harmed me (he never did), but because I was helpless to do anything. I watched him repeatedly spiral off the rails, and as an 19 year old at the time, I wasn’t exactly equipped with a wealth of knowledge on how to deal with the situation.
So when I woke up this morning, knowing I needed to make the various family phone calls, I did my Morning Self Assessment to see what my strength levels were like. By 10:40 this morning, I found myself walking to the kitchen ready to grab a glass.
“I need a drink” I thought to myself.
“Not juice. I want alcohol.”
And immediately scared the crap out of myself, because it was so automatic and it felt so right.
I reached for a ginormous bag of crisps and a carton of fruit juice, and I’ve decided I’m not an alcoholic. Of course I’m not! That’s just stupid.
But it’s not stupid. And it IS frightening.
My mind is doing all kinds of fuckery with me, at the mo, and as my big brother said on the phone this morning, “This is just the beginning…”
This IS just the beginning. And I need to conserve my energy and keep my head on straight, because this roller coaster is the shittiest roller coaster I’ve ever been on, and is already 3 weeks too long. I’d rather go back to Drayton Manor.
This is just the beginning. And I’m hoping I’m not classed as the worst fucking asshole in the world for hoping that this fucking crap ride, one way or another, doesn’t go on for longer than I can manage.