We’ve had a tough week. I’m highlighting this story because we are just one of the thousands of families coping with a terrible end-of-life situation without any help or support—from anybody.
Because this is a general blog with many topics, including writing journeys, I thought it would be worth serialising Alec’s story in three parts.
Hubby picked granddad off the floor on Sunday. Then, I checked on him on Monday and found him on the deck again, stiff as a board. He wasn’t dead but didn’t seem too far away from it. We prepared for his death—again.
Last week, less than an hour after the community nurses came for the first time, he messed himself. It took me an hour and a half to get him cleaned up—That baby just kept on coming, wave after wave of stinking crap, and you wouldn’t believe that one frail body could hold so much filth. He sat on my sofa, and there was a horrendous noise, followed by an even worse smell. It soaked through two layers of clothing and dripped out of the bottom of his trousers all the way up the stairs. I sat him on the toilet for an hour until his bottom resembled an angry red, and brown, and yellow, and green hobgoblin. Liquid death-poo coated him and me and the toilet, and the bathroom in general.
When there had been no leakage for ten minutes, I had to physically carry him, like a baby into the bath—we have no hoist or aids of any kind to get him in and out. The tub is plastic and couldn’t hold a showering stool, and when he planks, he couldn’t sit on one if it did. Hubby is strong enough to lift him safely in and out, but Hubby’s sixty-three and doing his back a grave injustice.
I can do it, but it’s far from a smooth transition and is about as safe as an ice-road trucker halfway across a melting lake with a full load. I got him in the bath and had to lower him all the way down in my arms because his legs weren’t working to support him. I took one arm from under him and used it to hold him up so that his head didn’t go under. My back was screaming for mercy.
He was in the bath. I could clean him up and make inroads on the death-smell that had travelled three times around every crevice of our house and had attached itself to soft furnishings and hard ones alike. But I hadn’t figured on the second wave. I watched it rise from between his legs like one of those party whistles with the roll out paper spring. It jettisoned like a torpedo from a submarine—was that a smirk on his face, or just the throes of thrutching?—and it floated, in a greasy, multi-coloured film on the top of the water.
He couldn’t get his legs under him to help me get him out, so I emptied the bath. Bless him, the cold air assaulted the muscle-wasted bag of bones that hadn’t eaten for five days. We are fortunate in that our shower is not self-contained. I showered the shit off him, off the bath, off me—the thick of it anyway. He lay with his jutting spine forced without the buoyancy of water against the hard plastic, and he shivered like a naked rat.
Lifting him out was more difficult than lifting him in. He came to us at about ten and a half stone—if he makes six now, I’d be surprised. That’s still forty-two kilos of dead weight to lift from a low position with arms and legs, and a backside that could well shit all over you. I’m not a soft woman, but I felt like crying. My heart was breaking for him—but it was more a wave of self-pity. Where were the do-gooding, judgemental nurses now?
Give him Fybrogel, and he has the squits the like of which the world has never seen. He’s like a silo machine spraying over a crop field. Don’t give him Fybrogel, and he doesn’t go at all until he’s impacted. He doesn’t have the strength left—or maybe his brain has forgotten how—to squeeze one out, so it sits there, like a rock. And we have to manipulate it out of his body cavity by hand.
I used to love my bath. I have developed several phobias that I didn’t have before Granddad came to live with us nineteen months ago. One of them is a debilitating phobia of my bath. The last time I had foaming bubbles and a lovely soak in the tub was over a year ago. That day, it had been rinsed after use, but Hubby hadn’t cleaned it properly. I leaned back to relax, and the bath was coated in an invisible ring of Granddad’s awful dead skin cells. They attached to my back and clung to me like parasites needing a host, and I felt contaminated. No matter how clean the bath is, it feels dirty. I don’t even like stepping into it with my bare feet and wear crocs to shower. Never-ever step into my beautiful bathroom in bare feet, Granddad’s invariably peed on the floor or crapped in the bath or gozzed in the sink, leaving a green pool of jellyphglem. That’s on a good day. On a bad one, he just spits it on the floor.
I had a lovely, clean, smell-free house—now I live in Armageddon. This isn’t my home, and sometimes I feel that I don’t belong here. Deadlines for the business haunt me, and sometimes the stress of keeping them is overwhelming. I’m trying to build Best Book Editors—it isn’t easy, but we keep smiling so that the clients never know what’s going on in the background. To date, every deadline has been met—but that could change any day.
With granddad’s diarrhoea, the smell is inhuman. It doesn’t smell like faeces at all. It has the god-awful foul taint of something rotten and dead. I think there may be some bowel cancer (undiagnosed), but it’s too late to do anything about that now. He isn’t in physical pain—enough frustration and mental anguish to fill an ocean with tears—but there’s nothing tangible hurting him that can be treated.
The doctor has a magic pad. He writes the following phrase on it, absolving him of all responsibility. He writes End-of-Life care, and he doesn’t have to do a damned thing. He doesn’t have to visit, treat him, or have his decaying state messing up his office. He just signs a new prescription once a month—job done—salary earned. I bet he wishes all his patients were as easy.
Granddad was put on End-of-Life care (what care?) on 7 March 2020. I think the doctor has realised that he’s pushed that diagnosis to the hilt and beyond. It’s granddad’s fault, of course, for refusing to check the boxes and check out. The bugger flatly refuses to flatline.
Last week Hubby rang the doctor to ask for advice. With having no support from any source, be it professional or personal, we have to cover ourselves. Granddad isn’t eating—again. He goes through phases. Some days he’s up all day and all night. At other times, he sleeps for twenty hours a day and hits the point where he refuses to get out of bed—or sometimes, he can’t get out. That brings about a new set of problems.
The doctor said that he was catatonic due to his medication. The only thing he’s on is Risperidone. He’s 89 years old and takes one medication—that’s a heart that knows how to keep beating. Risperidone is an anti-psychotic supposed to be a short course treatment to slow the brain and reduce agitation and aggression. It’s intended for short term use. Granddad has been on it for eighteen months. Give it to him, and it’s accumulative. He turns into a biddable, shitting, dribbling husk without the benefit of language or ability—don’t give it to him, and he’s an agitated, aggressive, violent arsehole who wanders around for twenty hours a day, taking things apart and destroying the house. There is not a happy medium in-between dosage. You get one, or you get the other.
‘Maybe it’s time we sent a community nurse out to assess him.’
‘We would greatly appreciate that. Thank you, doctor.’
So, last Tuesday, we had two super-nurses come out. In nineteen months, it’s the first time anybody has checked on him. They had all the answers as they passed their judgment and wrote on their notepads.
I told them I’d bring him down after we’d spoken. He has no comprehension or capacity to use the correct buzzword, but I wasn’t going to talk over his head.
‘Is he still in bed? It’s two in the afternoon.’
‘I’m running a business.’ (5 books to edit in less than a month, and wasting an hour and a half being judged to these two bloody idiots) ‘He was up from eight this morning until twelve-thirty when he wanted to go back to bed. I don’t wake him if he’s sleeping. It’s the time I get some of my work done—and he was up most of the night, too. He went down at five in the morning after roaming and fighting all night until eight when he got up.’
‘Oh, he should have a set routine.’
‘He doesn’t.’ Yep, thank you for making me feel like a piece of Granddad’s crap on the bottom of your shoe.
‘He could do with a shave.’
‘Yes, he could. I didn’t shave him this morning.’
‘Why is that?’
‘I couldn’t be bothered.’
I thought his pen was going to catch fire. It wrote that little gem down so fast. Yeah, I know, I do myself no favours, but they got my back up.
‘Sometimes, I can’t be bothered bathing him. Sometimes I can’t face shaving him. He gets bathed and shaved at least three times a week. Hubby usually does him when he gets home after working all day with an hour-each-way commute. Sometimes he can’t be bothered either, but most of the time, he can—and he does. ’
Write it down, that’s right, Three-times-a-week… careful now. Make sure you can spell A correctly.
I said I’d go and get him.
They didn’t wait for him to come downstairs as I’d asked them to, and they congregated in our narrow downstairs hall with their uniforms and plastic aprons and masks.
Granddad got to the top of the stairs and stopped.
‘It’s okay lovely, it’s just some visitors. They’ve come to talk to you, that’s nice now, isn’t it? Come on, let’s go down, and I’ll get you a nice cup of tea.’ The great cure-all for all damned situations. ‘You’re frightening him. Would you mind going back into the lounge where I asked you to wait, please?’
And then I heard it. The woman leaned into the man and whispered. ‘He is thin.’
She packed a thousand-word report of judgement into those three words.
It was time for me to spit.
‘I’m sorry, did you say something?’
‘No, no, nothing.’
‘Ah, see now unfortunately for you, I heard what you said, and the tone you used to say it. Are you allowed to be so judgemental? However, your diagnosis is wrong. He’s not thin— he’s skeletal, and that’s because he’s suffering from clinical malnutrition. He’s not hungry—he’s starving, and that’s because he goes days without eating. His main diet these days comprises Fortisip liquid diet. You want to see thin?—Try looking at him without any clothes on. If you’re going to judge and make a diagnosis, I suggest you get it right.’
We offer him food almost every day. If he’s up, we offer three meals a day. Some days, he doesn’t get up, so we take him Fortisips in bed. He’s provided everything from his regular phases of eating milk puddings to his other run of eating picky bits that he can eat from his hand—boiled ham, cheese, crackers, fruit, biscuits and cake. Sometimes he eats them—more often, he spits them out.
‘Perhaps you feel that we should pin him down and force-feed him? It’s effortless to sit in judgement from a sideline.’
Phobia number two, I can’t eat my dinner when Granddad’s eating because of the mess he makes and the fact that he spits everything back into his bowl. The spitting is disgusting. It makes me gip.
Their final judgement was. ‘Are you sure this is the best place for him?’
‘Yes, I am. It is his—and my partner’s wish—for him to die peacefully and painlessly at home with us. And to the best of our ability, we’re going to see that it happens.’
We are to have a weekly visit. Hallelujah, our problems have been answered. Once a week, they’ll come in their crisp uniforms and sit for thirty minutes telling me how to best look after Granddad. For the other 167.5 hours, we will do what we’ve been doing without them for the last nineteen months.
We were ordered to buy hip protectors and an epilepsy helmet. I say, ordered because they put us in a position where we had to buy them. After being advised to get them by a health professional, if he goes on to break his hip or shatter his skull, we would be negligible for going against medical advice.
Granddad doesn’t usually fall when we are with him—because we are with him.
He falls when he’s alone in his room. Yes, an alarm mat would be a good idea—I agree, we’ll get one.
We’ve already bought the helmet for £28.00, but he can’t wear it in bed. He takes it off two seconds after putting it on, and that’s when we can get it on without getting bitten. It’s when he gets out of his bed to go to the bathroom that he falls—helmet, nothing short of useless.
‘Yes, of course, we pad him so that he doesn’t have to get up to go to the bathroom. However, that’s only been for the last few weeks. We tried to protect his dignity until we couldn’t any longer. You try telling a man that doesn’t understand to wee and poo in his pants and not to bother trying to go to the toilet as he’s done all his life. Even if that toilet is now the windowsill, the chest of drawers, or the boiler cupboard. We pad him, and he rives it off and makes a snow scene all over the carpet. So yeah, feel free to try keeping him in bed. Good luck with that.’
We’ve bought the hip protectors for £68.00. One pair of underpants with pockets that the foam wedges fit into—but he can’t wear them in bed because he won’t be able to turn himself, and they will give him pressure sores—hip protector underpants, nothing short of useless.
All in all, I’m grateful that somebody is coming, at last, to check in with us. We’ll listen to their advice—even take some of it, if it makes sense or in any way benefits granddad—or us.
They want to put him in a nursing home—they made that clear. Hubby is equally clear that it isn’t going to happen. So, I can do without the judgement—thank you.
I lost a full day’s work yesterday with the fall, the flood (I’ll get to it next time), the nurses and the crap.
This morning there was an almighty thud, and he’s fallen in the bathroom—planked, and I had to lift him—again. I’m too old for this. We rang the doctor yesterday to ask for an emergency call. He didn’t ring us back. Hubby’s home, so we rang to speak to the doctor this morning. There is nothing on the system to say that we asked for a call yesterday. The lady looked in the diary—we can have the next available phone call—in two weeks. I kid you not. Hubby demanded to speak to the doctor today—he isn’t in today. We called the community nurses, as we’ve been told to do when he has a fall. The team lead, who is the person who can talk to us, is off today. It seems that everybody takes a day off on a whim in the middle of the week—Hubby included. Enjoy your day off, people. It’s every day of the week for me, and twenty-four hours a day—judge that. And Hubby’s taking the rest of the week off. He’s tired—bless. He thinks he has COVID. If he has, I’ll eat Granddad’s epilepsy hat. With having him home for the rest of the bloody week, I might as well say goodbye to getting any damned work done at all.
I didn’t sign up for any of this. I’m living in hell.
And back to business. Let’s highlight somebody. Eeny, meeny, minee, mo. Who needs a plug to go?
Let’s do Sean Armstrong. He is a new client who came to us this month.
Sean is a remarkable young man and doesn’t mind me saying that he suffers from cerebral palsy. He took out a range of our services, including first and second pass editing on his book. We did his typesetting and created his book cover. The Green Girl and the Serum is his first book in a series of six in the superhero genre, and it’s fabulous. You can buy it here.
We edited his book for two complete passes (6 runs), did his typesetting, and created his cover. At the last point of sign off, he said he’d found errors in it. For our peace of mind, we gave him a further edit for free— I reported back that we hadn’t found any mistakes to be told he’d been looking at his original pre-edit document. Bless him. Oh, how we laughed, haha, haha. From start to finish, his book was done and in the Amazon store within a month.
I point this out for two reasons, To show that we are fast and efficient. And to highlight that if one of our guys has a problem, we will work to sort it out. We pride ourselves on a 100% rating. We know that sooner or later, one sad day, at the end of the day and using every other daily cliché you can think of, somebody is going to be unhappy. And we won’t be able to make that claim. You can’t please all of the people all of the time. But for now, we hold our title of never having had a customer problem that we couldn’t solve and can say in all honesty that our 100% customer rating is intact.
In other news, we have a new commission from our client Jay Bailey. He is creating a range of characters and scenarios for a series of comic strips and videos. In the initial commission, he ordered a set of 40 images. They are well underway and being worked by our lead illustrator, jay.
We have a new client Tiffany Ann who has had her first pass edit done by the team. My third editor Rebecka did the first run on it to clear some of the deadwood, and then I did the second edit and the third skim check edit. We wish Tiffany Ann every success and look forward to giving her a free Marketing for Life package on release.
Next up, we had Andrea Gault back for editing on her second book with us. I took that one on solo 130K and only came up for air a couple of times. That has been returned this week. Good luck, Andrea.
We have another new client for 1st pass editing. Christina Sorrentino’s first book Silent Scream is with our Rebecka to work her magic before I get my paws on it.
This week I have slots available for book trailers, illustrations, typesetting, cover design and author logos if anybody would like to book in.
I am also throwing out a unique opportunity. I am looking for an apprentice of sorts. We are in a position where something always has to give. When I’m up to my eyes in editing, I don’t have enough time to market the business after making sure that the client marketing and promotion are done. The same is true in reverse. If anybody is interested in office management or professional editing, I would be willing to train that person in return for some help with marketing and general office tasks. I’m looking for a good all-rounder.
My third editor, Rebecka, came to us after beta reading one of my own books, and I was so impressed with her that I hired her. This position would be on a voluntary basis initially in return for learning some skills. However, we are fair and are always looking for talented people. If the person works out well, takes some of the burdens, and starts to bring in business, it would transfer into a paid position.
The correct person is essential.
Katherine Black / Susan (Sooz) Simpson
Founder of Best Book Editors
Katherine has held almost every single job imaginable, from painting gnomes to zookeeper. She spent most of her life in the caring profession and has managed both a nursing home and a care agency. But her passion for the written language always brings her home to novel writing.
Born in Tyne-and-Wear, North-East England, she has settled in the beautiful Lake District, Cumbria, with her partner, two dogs, a cat, an iguana and a python (just don’t ask her which of those six things is her favourite!).
She specialises in content creation and social media outreach, and has been a developmental editor for hundreds of clients. She owns and operates bestbookeditors.com where she helps foundling authors polish their skills. However, after being diagnosed with a dramatic brain condition in 2022, she has had to let 23 staff go, and scale back the business. BBE is still very much open, we are just fewer and can’t take as much work on.
Katherine Black is the author of psychological thriller/detective/fantasy adventure novels.