Registering a death … the difficult way

The flowers Mum did for Dad’s coffin.

It’s a month, almost exactly, since Dad died. The dust is beginning to settle, except that I seem to have a thousand letters to write. Jeepers but my Mum writes a lot of letters, or at least, she doesn’t any more, I write them for her. But she thanks everyone for everything and to be honest, I haven’t yet. There are lots of folks who couldn’t come who need to be sent a service sheet, and a godmother who only communicates by letter who hasn’t been told (my bad).

There is a partial reason, I’m slow at things I stress about, and for some reason I really stress about making calls, writing letters etc. Don’t get me wrong, I actually love writing a letter when I have the time and space to do so, but time and space … that’s not really something I know about anymore.

On the upside, I have kicked some royal bottom with the forms. Dad’s affairs were pretty simple. We’d spent every last penny of his assets on his care so all he had left was half of what was in the bank account, because although it officially came from Mum’s savings the account was a joint account. He also had a pension which I needed to sort out and his state pension. I think I managed to get onto the ‘tell us once’ register which means the information filters through to everyone, although as I understand it, it was the lady I rang at the pensions enquiry line who put the information on. HMRC rang anyway, and they’ll look into whether there’s any tax on Dad’s teacher’s pension that they would need to refund. Yes, despite being retired Dad paid tax on his pension. How does that work? It’s money he’s saved up while he’s working so it’s already taxed surely?

One of the things you have to do when someone dies is register the death. The undertakers, who were chuffing marvellous, helped us with all this, booking an appointment. They told us that when the death certificate came through they would call us. My dear brother had booked this registration for nine o’clock on the morning of the Friday after Dad died. However, as he made to leave the day before he realised that someone or something had smashed the back lights of his van. So he had to get it fixed. On the up side, the appointment with the registrar had been changed to four pm on the Friday. On the downside, he might not be down in time to register the death, he warned me, because he couldn’t come down until the parts were fitted and they weren’t arriving until Friday morning. If I was doing the trip, afternoon was a lot easier for me, a very much non morning person.

You have to register the death within five working days. In order to do so, you need a death certificate which you get from a Doctor. Clearly there are sometimes exceptions, if there’s a post-mortem etc. In our case the death certificate was sent to the lovely undertakers who were unbelievably fab. To register the death, you collect the death certificate from the undertakers and you go to a special office run by the Registration of Births Marriages and Deaths for your area. Usually it’ll be in your nearest big local administrative town. You need to make an appointment and they can get quite booked up so it’s wise to ensure that either you, or the undertakers, ring up to do that pretty sharpish after the death. You have ten minutes’ leeway to be late for your appointment. After that, you have to make another one.

In my case this was in Worthing, the Chichester end rather than the Brighton one. I had been foolish in that I’d been copied in on some of the email correspondence between my brother and the undertakers about this but didn’t really read the emails properly because I wasn’t expecting to be that closely involved. I just knew I had to pick the death certificate up from them sometime on Thursday, which I did. It was clear I might have to attend the meeting if my brother couldn’t make it in time, but until the van prang, I’d doubted that would happen.

Once collected, the certificate came in an envelope upon which someone had thoughtfully stamped the address of the registration office along with their phone numbers. I googled it and one of Dad and Mum’s carers, whose own father died suddenly a year and a half ago, explained that there was no parking at the offices, you had to park down a side road. That in mind, I decided to make sure I left myself plenty of time and set off early.

I arrived at 3.30 and drove in, confirmed there was, indeed, no parking, and drove out. I noticed the registration of births marriages and deaths sign straight away but my mental warning klaxons started to sound as I realised it was denuded of any actual lettering, and that this building was proclaiming itself the home of the Registration of Birth Marriages and Deaths merely by dint of dirt sticking to the glue where the letters had been.

‘Hmm,’ I said to myself.

I parked as close as I could and walked as briskly as someone who isn’t physically able to run anymore can to the reception. Naturally there was a queue.

‘I’m here to register a death,’ I said cheerfully when, after a few anxious minutes, it was finally my turn. It was one of those booths where the bullet proof glass is so thick you can’t hear the person behind it so you speak to them through an intercom.

The lady stared at me with a blank expression.

‘One moment,’ she said, her lips moving but the sound of her voice surprising me tinnily from a speaker a few feet to my right. Behind the bullet proof glass she turned to her colleague as if to have a private complication but naturally the mike amplified it all.

‘Registration of births marriages and deaths? That’s not here is it?’
‘No … I’m not sure where they are.’
‘Please help me, I can’t miss this appointment my dad died last Saturday and I have to register his death within five working days.’
The lady pursed her lips and weighed up this further information.
‘Ask Dave,’ said her colleague.
She turned back to me, as if I’d neither heard nor participated in the previous conversation and said.
‘I’m going to ask a colleague. Please wait here.’

She strolled to the back of the office and picked up a two-way radio.

‘Dave?’ she said.
Click, hiss, crackle.
‘Yeh?’
Click, crackle.
‘Lady here’s looking for the Resister of Births Marriages and Deaths. I heard her tinny amplified voice say.’
Crackle, crackle pop.
‘It’s moved.’
Hiss, click, crackle.
‘Yes.’
‘D’you know where it’s gone?’ I asked through the glass.
‘D’you know where it’s gone?’ the lady asked Dave.
Crackle, hiss, click, pop, crackle …
‘It’s near the law courts,’ he replied. ‘Next to the station.’
‘Thanks Dave,’ said the lady and I, in unison.

She returned to the window.

‘It’s near the law courts,’ she said.
‘Thanks,’ I told her, again but I was already stepping back googling the fastest route on my phone as I went.

A quick glance at my watch showed it was quarter to four. I had to get back across town but I might make it. I’d give it my best shot anyway. First I must ring the number on the envelope and tell them I was going to be late. Except the number on the envelope was as out of date as the address.

Balls! The wrong bastard number!

Now what?

Ah yes, ring the undertakers they’ll have the number because they made the appointment. I found their number on my list of made calls, phoned them and breathlessly explained my predicament as I speed-limped back to the car. They told me not to worry, that they’d ring and say I was going to be late. They were pretty sure I’d have ten minutes’ leeway. By the time I got back to my car it was ten to four, I might make it … possibly … but I needed the name of the building I was heading to. If it came down to minutes, ‘next door to the law courts’ wasn’t going to cut the mustard. I had to know exactly where I was going.

After a mile or so, I pulled in and googled, ‘Registration of Births Marriages and Deaths, West Sussex.’ It came up with the main office number in Chichester. I dialled and then as the plastic google lady shouted instructions to get to the law courts next door to their Worthing office – which was better than nothing – I drove at a very tense 30mph towards my destination, speaking to a kindly young man as I went. He eventually managed to give me the the name of the building. It turned out it was also next to the Library, which was far more helpful as I knew exactly where that was. Yes, they would give me ten minutes’ leeway but if I was later than that, I’d have to rebook.

Stuck at an interminably long red light, I put the name of the building into google and started a new set of directions.

Worthing is absolutely infested with traffic lights, and I was the one on the end of the queue who either stops and heads up the next one, or goes through every single set on the orange. Two of them had red light cameras that I hadn’t seen until I’d gone through on amber, only ramping my anxiety levels up still further. Luckily neither of them flashed. A small mercy. At last I got to a set of pedestrian lights which were going red every thirty seconds or so as the good burgers of Worthing crossed the main road going about their business. It was mostly parents with kids from my old school heading for the library on their way home.

Roundly cursing the lights, which added another precious minute to my journey time, I finally got through and turned left, where google directed, down a tiny side alley, only to be confronted with a locked bollard blocking my way and an empty car park beyond.

Bollocks!

Now thanking the good lord for the traffic lights I’d cursed, I reversed back up the narrow alley at speed and out onto the main road, with a slight squeak of tyres, as the traffic sat backed up behind the lights.

‘Your destination is on your left,’ said the plastic google lady as I passed the side road to nowhere.

Woot.

There was a parking space too. Small but … there. I reversed in, badly and after a couple of backs and forths to at least get the wheels off the pavement. I leapt out and after checking with a passer by, parking free for an hour, double woot! I ran in.

There was a reception desk, no bullet proof glass this time. I explained why I was there, they pointed me to a doorway, I pelted through and met the registrar walking down the hall. I explained what I was there for and she explained who she was and showed me into her office, with two minutes to spare …

As I sat there, a sweaty slobbering heap, she explained she’d need to ask me some questions. Listen, if you ever have to register a death in England, there are things you need to know.

Firstly, you have to have the death certificate, of course. It’s also useful to know the name of the doctor who has signed it, they couldn’t read his writing so it took a while to work out which surgery it was, look up the names of the doctors and decide which one fitted!

You will also need the person’s date of birth, National Insurance Number, date and location of death and very importantly, you need to know where they were born. If you cock any of this stuff up, then, as I write, it’s £90 to change it.  So you do want to get it right. The only one I fell down on was where Dad was born. I was pretty sure but not 100% certain so I rang Mum to check.

‘Roehampton.’
‘No that’s where you were born.’ I glanced over at the registrar. She was smiling kindly.

I remembered the name of the house Dad was born in though, and I knew that, in a complete fluke, Mum had lived there too. She might not know where Dad was born but she still knew where her old house was. Phew.

Death registered, I thanked the Registrar for staying back late on a Friday, she gave me a green form to deliver to the undertakers, without which they couldn’t bury Dad, and I headed home.

There’s nothing wipes a person out more than trying to register a death in the wrong fucking place. But it also made Dad’s death very real. It’s a strange thing, I wouldn’t have wanted him to suffer any more, indeed, I almost wanted him to die because I wanted his suffering to end and, more selfishly, I wanted my suffering to end, watching it. But on an even more selfish note, he was my Dad and so, a part of me wanted him to stay. It’s complicated and difficult to explain.

The black dot is a lark.

Driving home, I headed out of the back of Worthing and took a tiny road off the A27 that goes over the downs and into Steyning. I love that road. It’s like being on the roof of the world up there. That’s the thing about the downs, they’re quite narrow, so if you stand on top of them you can see the sea stretching away into the distance one side and the Weald the other. It was bright sun and I walked through a gate and into a field and lay in the grass for half an hour or so, looking at the blue sky, listening to the larks, letting the dust settle.

So yeh, as well as knowing your loved one’s date of birth, place of birth, date of death, place of death, national insurance number, address they died at and full name, double check by phone with the Registration of Births and Deaths for your area you’re going to the right chuffing place before you set off, alright?

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The end

on top of a Down for a while

So here we are … it’s official. I’m a demi-orphan. Dad died, peacefully, just before eleven am on Saturday 25th May. My brother and I were on separate sides of the M25. My mother was holding his hand. In those last two weeks I had two visits to Dad where there was so much love.  He seemed way more lucid too, as if being too weak to speak very much had given him back some brain power to compute the world around him. And after he’d had the last rights he was totally content, peaceful and unafraid.

Dad stopped eating. People with Alzheimer’s do this but when it happened, in April, I was away. I returned form holiday in late April to dire stories from Mum of how thin and ill he looked. Before I visited him, I asked the lady who ran the home about it. She explained that his refusal of food was, indeed, a standard Alzheimer’s symptom. I asked her if this was the end game. She told me that it depended. Dad was frightened to try and stand, he feared he’d fall, so his rehabilitation wasn’t going so well and that meant, ‘some young whippersnapper’ (her words) did everything for him, dressed him carried him … everything. The only thing he had any control over, she explained was whether he said yes or no to food and drink.

So it was about control.

‘How long does this stage go on for?’
‘How long is a piece of string?’ she replied.

She went on to explain that, while it was hard to ascertain the exact motives, at this stage of Alzheimer’s there were three reasons people stopped eating; they’d forgotten how, it was the only thing they could control, yes or no to food, or they’d had enough.

‘It’s very difficult to say but I think your Dad falls into the third group.’

She explained that both she and the doctor who had come out to see him believed it was about leaving. That Dad had simply had enough of this life and wanted to go on to the next one. I asked what I could do and she said bring things he likes for him to eat, so I bought jelly babies, wine gums and Turkish delight for the next visit – three great favourites.

He was pretty dogged, continuing to starve himself for the next few weeks with the odd break where the temptation to eat ice cream clearly became too much for him. During that time I want to see him every week; a bad visit, a pretty good visit when we did silly waves goodbye and I left him laughing and then a completely wonderful one, where I sat next to him in the lounge and recalled stuff my brother and I had done. It was like talking to someone who was half asleep, he was very weak and couldn’t raise his head, so I angled mine down so our eyes could meet. I told him what his grandchildren were up to, my lad and the others, and he smiled and chuckled, and projected this amazing aura of love. There were points where he fell asleep and I sat back and gazed out of the window, at the downs and Cissbury ring but the love thing remained. Then he’d wake up and I’d start recalling stuff again.

I’m a bit mithered about what I’ve told you but I think I mentioned that one visit was very bad, the first after my holiday. Dad told me to go away, so I held his hand and explained that he had a daughter and it was me. He changed then and was happy to let me hold his hand but there was still no response from him. It was difficult to get the measure of this new unresponsive Dad so in the end, I got out my phone, and Gutenberg, and looked up a book he used to read my brother and I at bed time, The Fierce Bad Rabbit by Beatrix Potter. I read it to him.

Dad made no sign of enjoyment but Maurice, next to him, clearly loved it. And next to Maurice was a gentleman sitting very straight with his hands on his knees staring into space. I wasn’t sure if he’d heard or not, until that good visit, near the end, with the gaps where Dad nodded off. In one of the gaps I sat back and looked over at the fellow who was sitting straight up. He was staring straight at me and then, very slowly he raised his hand and gave me a thumbs up. I don’t know what his condition was, so I’ve no idea if he was a simple Alzheimer’s sufferer saying hi or someone who fully understood how hard that previous visit had been and was giving me encouragement. Whatever it was, it brought a bit of a lump to my throat for some reason. I gave him a big smile and a thumbs up back, then Dad woke up again and we carried on.

Five days after that visit, on the Monday, is when I got the first call for the deathbed scramble I described in my previous post. Dad got the last rites, which we knew was important to him, and I felt that I was incredibly lucky that I got to say goodbye with ADBA even if it was three days beyond that before Dad actually left us. Strangely, that feeling of connection I described with Dad didn’t actually go, it stayed there, quietly in the background.

On the Friday, I got a call from Mum saying they didn’t think Dad would last long. I confess I cried on the phone and told her that I couldn’t make it that night. I prayed, sort of, only to Dad, trying to send him love and good thoughts and explain that I’d see him the following morning. McMini hadn’t seen me for four days, then, when I’d finally returned home on the Thursday, McOther was out. He begged me to stay Friday so we could have a family evening together and go to Sussex on the Saturday morning. I’d already said goodbye to Dad so any thoughts of going to Sussex that night evaporated and I agreed.

That Friday night I got a message on the carers’ chat group. Mum had rung one of the carers, worried that Dad would die when she wasn’t there. The home were brilliant and had promised us that when he became really bad there would be someone with him round the clock. They’d also told me we could go any time. The carer said she’d reassured Mum but a little while later, at half eleven, she rang me, in tears. She and her Mum were the original carers. The team has grown over the years but to start with, back in 2012? 2013? It was just the mother and then, shortly afterwards, the two of them. She loved Dad like he was her own father, people tended to do that when they were around him for long, and she explained that she felt as if she hadn’t said her goodbyes to Dad. I told her how the home had said we were welcome to go see Dad any time and said that if there was anything she needed to say to him, to go then. I told her I’d ring the home and let them know she was coming.

A few minutes later she pinged me a text to say she and her mum were going over.

I slept fitfully that night and the next morning, received a message on the carers’ WhatsApp group at about half six. The mother and daughter team who’d gone to visit Dad the night before had stayed with him, chatting and sleeping fitfully all night. They knew it was what Mum would have done if she’d had the strength and it was an act of such complete and utter love on their part which still humbles me.

They were texting to say they were leaving. They said he was able to do a half smile when they shared funny stories, so they knew he realised they were there. By half eight while McOther was out at the shops, I got another call from the home to say Dad only had a few hours left and that someone should come. I rang Mum and told her I’d put out a call on WhatsApp and it’d be the first person who answered.

The younger of the two ladies who’d been with him all night popped up and took her in.

My brother was on his way, I left as soon as McOther came home from the shops.

When Dad died I was on the four lane bit of the M25. No stopping and the traffic though slow, was moving. Thanks to our lovely carers, Mum was sitting next to him, holding his hand. The local vicar missed him, there was some huge Christian festival which blocked all the roads for miles around and she couldn’t get there in time but she said some prayers after he’d died.

Something happened, I’m not sure if it was just after or just before I got the call about him dying, I honestly don’t recall, but the feeling of connection, of love that I’d felt the at the last visit and the Wednesday before … that was still there and I was kind of praying to him I suppose. This is difficult to explain but basically I was thinking about him really hard in the hope that I could somehow send enough love out through the ether for it to reach him and for him to know where it came from.

As I thought about Dad, and tried to send him love from afar, I had this weird kind of out-of-body. I was looking at the roof of the home he was in, like the satellite picture only it was in much higher definition, receding fast, as if I was flying upwards at speed. There was a sense of freedom and unbelievable  joy. In no time, the viewpoint was high above the downs, flying along side of them towards Truleigh Hill. I could see the blue of the sky, the yellow and white of the flowers in the meadows below, I could hear the larks, drink in the sunlit green of the hills and blue of the sea. All the while, my heart was bursting with love and joy at the beauty and wonder of it all, at the sheer delight of existence, of a life well lived, of gratitude at the loveliness of the people surrounding me and the love and happiness I enjoyed, and I was filled with it, too. It was a bit like that feeling you get when you come off the best fairground ride ever and you’re thinking,

‘Blimey! That was a blast. I must do it again.’

Except it was a million times better. It was pretty fucking extraordinary. Because I was sort of feeling it as if it was me, but also feeling it with someone else; their feelings, being shown. And I may be nuts to say this, and I’m definitely laying myself open saying it in a public place but it felt as if, somehow, my efforts to connect to Dad had succeeded, as if those were his last conscious thoughts.

After it was gone, the traffic slowed more and I had to contend with the bell ends in the van behind me who were so close I couldn’t see their headlights. Clearly my decision to leave a 20 yard stopping distance, crying my eyes out as I was, my vision blurry with tears, offended them. But I was unable to stop and blurb properly because you can’t on that bit and I didn’t fancy sitting up the arse of the car in front while visually impaired! I gave them a brakes test and they backed off.

Back in Sussex, the people at the home washed and dressed my dad, and laid him out with a palm cross in his hands. Another act of humanity and love.

See you later Dad.

Back on the M25 I tried to reimagine the experience I’d just had, the connection, the joy, but I couldn’t make it feel the same. It wasn’t just because you can never quite recreate the impact of something like that a second time, but also because it didn’t feel as if it had come from me. It felt as if it had come into my mind from outside. Maybe those were my father’s last conscious thoughts.

Later, when I returned to register Dad’s death, I went to see his body. All I could think of was that bit in whichever gospel it is when the women go to look in the tomb to embalm Jesus and there’s some bloke is in there who basically says,

‘Why are you looking for him in here among the dead? Fuck off back to where he is; with the living.’

A good death then.

The connection? Still there. Quietly, in the background, giving me strength.

Death Is Nothing At All

By Henry Scott-Holland

Death is nothing at all.
It does not count.
I have only slipped away into the next room.
Nothing has happened.

Everything remains exactly as it was.
I am I, and you are you,
and the old life that we lived so fondly together is untouched, unchanged.
Whatever we were to each other, that we are still.

Call me by the old familiar name.
Speak of me in the easy way which you always used.
Put no difference into your tone.
Wear no forced air of solemnity or sorrow.

Laugh as we always laughed at the little jokes that we enjoyed together.
Play, smile, think of me, pray for me.
Let my name be ever the household word that it always was.
Let it be spoken without an effort, without the ghost of a shadow upon it.

Life means all that it ever meant.
It is the same as it ever was.
There is absolute and unbroken continuity.
What is this death but a negligible accident?

Why should I be out of mind because I am out of sight?
I am but waiting for you, for an interval,
somewhere very near,
just round the corner.

All is well.
Nothing is hurt; nothing is lost.
One brief moment and all will be as it was before.
How we shall laugh at the trouble of parting when we meet again

Source: https://www.familyfriendpoems.com/poem/death-is-nothing-at-all-by-henry-scott-holland

This poem was read at Dad’s funeral and shortly afterwards, one of the lovely people on my mailing list sent it to me, which rather heartened me as I must be collecting a group of the right kind of people!

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The end … probably.

This week, I don’t know where to begin. It was one of the most intense and strange experiences of my life. Let’s start with Monday.

Monday morning I went to the gym and came home with a list of bits and bobs I needed to do for my writing. As I sat down, to write, I realised I’d missed a call from Dad’s home. I rang and was put through to the nurse who was looking after him that day.

‘Your father did not eat or drink anything yesterday and he is refusing all food and drink today,’ he said. ‘I think we are close to the end.’

‘Oh bless him, poor Dad. Do you need me to come now?’ I asked. 

‘You don’t need to come, but if you want to see him, you should come.’

‘I’m coming down to see him on Wednesday.’

‘He may be here on Wednesday. He is going down slowly, but today or tomorrow is better.’

‘D’you mean, Wednesday will be too late?’

‘If he carries on this way, I think so, although it is difficult to say.’

‘Has a priest seen him?’

‘Not yet, there is a number we can call, would you like us to get one?’

‘Yes please, he’s Church of England, an Anglican I’ll try and get the parish priest from his own church to come too.’

‘He won’t be alone, when they reach this stage, we always make sure is someone with them at all times.’

Go softly into the night …

I said thank you and rang off.

So here it was, the moment all of us had been dreading, yet kind of hoping for too. It looked like Dad was on his deathbed, time to scramble the troops. But this is Alzhiemer’s so there was nothing to say Dad wouldn’t start eating and drinking and be fine, indeed, in my own mind, I had this last bit pegged as the lying-in-a-bed-year.

This is where WhatsApp is a godsend. I managed to tell everyone, barring a couple of folks, with one message to our WhatsApp group. The biggie was telling Mum, though, because she was alone until midday and I wanted to be sure there was someone with her when I passed on the news.

That evening, McMini wanted to bring a friend home after school. He pushed, I said no, he told me the friend had to come because his mother had already said it was OK and left the school gates, I told him no, he kept pushing and I explained Pops was ill. Still he wanted the friend to come and I’m afraid I snapped, angry with him for not appearing to give a shit, I told him his grandfather was on his death bed, that his father was on the way home so I could go say goodbye and that I was not in a very fit state to play the part of kindly friend’s Mum, but I let him bring the friend home for a short visit.

I felt terrible for breaking it to him like that. The little lads took a long time to arrive and I discovered that McMini had hung up and then cried his eyes out, at which point he and friend had stopped and sat on a bench so friend could comfort him and friend had cried too. I felt bad but also reassured that he cared more than he’d made out.

I got hold of Mum and Dad’s parish priest and she promised to be at Dad’s bedside that evening. True to her word, she arrived shortly after Mum and gave Dad the last rites, or Extreme Unction which sounds like some kind of dangerous sport. Dad was quiet and not very responsive but incredibly peaceful when it was done.

My brother and I drove down to Sussex on the Monday evening, but it turned out that Dad had taken a little water and eaten some sweets, perhaps he was on the mend? We didn’t know.

We discussed it. What do you do in a death bed situation? Life is not the same as it was, you can’t stop the world and step out of it for a couple of weeks to sit, in vigil, by a slowly fading loved one. It’s a luxury modern life no longer affords us. There’s stuff to do and the bastards who want you to do it consider such a situation no excuse. Commerce can’t afford space for acts of compassion like that.

At five thirty a.m. on Tuesday I woke with a start to find my mother standing over me, complete with walker.

‘We have to ring the home.’

‘What? Now?’

‘Yes.’

‘It’s five am.’

‘They said we could ring any time.’

‘On you go then.’

‘You’re the main point of contact, you have to do it.’

Sometimes I forget that my Mum has dementia too. So I rang the home. He was comfortable and had eaten a couple of sweets and had some water.

We went to see him on Tuesday. The four of us, together as a family, painfully aware that it was probably for the last time. He wasn’t hugely responsive, although I felt maybe that was the way we were dealing with it. Maybe we weren’t engaging him right, because throughout his illness, Dad has made the running, asked the questions which we answer. Always the host, asking us how we are, who our relations are, and asking after them. A polite interrogation, sometimes after those he loves, sometimes, engaging us in conversation as if he’s meeting us for the first time.

Lancing Beach near our lunch venue.

He lay there, looking at his hands, even frailer and thinner than last week, ravaged partly by his illness and partly through force of his own will. His head like a skull with thin skin stretched over it, the lesions … I thought of him as I’d known him, remembered our holidays when I was a nipper, squelching across the mud on Stiffkey salt marsh. Dad was a man who loved the sun on his skin and the squelch of the mud between his toes! I wished for a lot of things that I can’t have.

He was very peaceful. It was like sitting in a doctor’s waiting room, Dad was calm and clearly perfectly content, waiting …

We went out to lunch afterwards. It felt like this was a good and gentle death, even if it’s a slow one, and I didn’t fully hoist in how upset Mum was until she couldn’t eat anything.

Later, we tried to work out a plan of action. What to do? Was this was the first of many deathbed scrambles, or was there was only going to be the one. Eventually, we decided that he probably wasn’t going to die in the next few days. My brother decided to go home and come back at the weekend. I decided to stay until Wednesday morning because I’d agreed to meet a lovely family friend and see Dad with him.

Wednesday came, Dad was still around, said friend turned up. I shan’t name him because I haven’t asked him if I can so I’ll just call him Adba. Anyone who should know will realise exactly who that is and no-one else will be any the wiser. Anyway, Adba turned up and off we went. His mother spent the last year or so of her life in bed, in a similar state to the one Dad was in now, so when we walked in, he knew exactly what to do. He took Dad’s hand, called him by his name, said he was looking well, acted as if Dad was perfectly responsive and of course, the miracle happened. Dad was.

He couldn’t speak, but his face broke into the most delighted smile and he raised his hand and waved a jokey wiggly fingers wave. Adba waved back. I waved. We laughed, Dad smiled.

We reminisced about the Hogworts set I grew up on, Dad’s time there and the other members of staff. Dad smiled and nodded and sometimes shook his head and waved several times. Adba and I recalled funny stories to Dad about his exploits as a housemaster, and shared them with one another.

Forty minutes flew by and it was time to go. I took Dad’s hand and told him I loved him, that he was the best father anyone could ever have had, that McOther, McMini, his other grandchildren, my brother, my mum, (and pretty much Uncle Tom Cobbley and all by the time I’d finished listing everyone who wasn’t there and who’d want me to tell him while he was with it) loved him. He smiled, a wonderful huge smile, and squeezed my hand again and again as I spoke. Both of us were just filled with joy. It was one of those rare moments of connection and love without words, when even if he couldn’t speak, he didn’t need to be able to. At the end I said goodbye. Dad and I both know what kind of goodbye it was – Adba probably knew and all – but I told Dad I’d see him next week anyway, and Adba said he’d be back to see the old boy the week after, we said we’d see Dad together that time, same as this visit.

It was a near perfect farewell for me and I am eternally grateful to Adba, whose presence, and whose wisdom in engaging with Dad made it possible. Those smiles and those squeezes of the hand were wonderful. I just feel bad that we didn’t take Mum with us to share them too.

Adba and I came out of the home, only to immediately get a phone call from Mum’s carer. My uncle on Mum’s side who was coming to lunch that day, had arrived with a gargantuan nosebleed. The carer at home reckoned it would be best if she rang the pub we ate in and got them to do a takeaway, could we pick it up? Of course we could. A few seconds later we were directed to a different pub.

We duly picked up the fish and chips, they took a little while so Adba and I had half a pint of Harveys each in the garden. When we picked up the lunch we left in haste, without paying. Arriving home, it turned out that Uncle’s nose was still bleeding. He was sitting on a stool in the downstairs loo, and it looked as if someone had been murdered in there, but only after a good twenty minutes of stiff resistance.

Oh dear.

Taking in the bloodied surroundings, I began to wonder about blood loss at this point and suggested an ambulance. In the end, carer – who shared my concerns – and gardener – who was ‘mowing the lawn’ but really just checking Mum was OK – leapt into carer’s car and drove Uncle and Aunt to hospital, gardener escorting them in while carer parked. I did manage to get Aunt to eat half her fish so at least she wasn’t going to be sitting there feeling hungry as well as worried.

Off they went, leaving Adba, Mum and I finishing off the fish and chips the others hadn’t eaten. At this point I remembered we hadn’t paid for them, rang the pub and paid by credit card. I announced that I was going to be very British about the murder scene in the downstairs loo and pretend it didn’t exist while we had a chat. Adba left at half three and I went and cleared up. It took until half four. Then I deep cleaned our spare room so Uncle and Aunt could sleep there because I didn’t think either of them was in a fit state to go home. Once I’d done that, I realised I was going to have to stay Wednesday night as well because Mum already has dementia but the state of Dad has really knocked her for six and so she’s even more challenged in the memory department than usual, bless her. I didn’t want her waking up and being surprised to find her brother there and the state she was in, she might have done.

Uncle and Aunt finally got back late, I had a light supper ready. We did breakfast the next morning and then they had a follow up appointment at the hospital at 1.30. They wanted to take a taxi to the hospital rather than drive so I sorted that out for them. Finally at about 12.00 I set off for home. I arrived with half an hour to spare before I needed to be meeting McMini at small church, which he does on a Thursday. I used that half an hour buying some summer clothes that fitted my ever expanding, ever more zeppelin-like body.

It’s Friday as I write this and I’ve just received a call from my Mum to say that Dad has been given a prognosis of hours if it’s bad, a day or two if it’s good. So it’s back to Sussex again, although I need two good night’s sleep in a decent bed before I go back down there, and also, half term plus Bank Holiday Friday traffic tonight? No thanks. Not even with the Jo Whiley show, which was a wonderful tonic as I snivelled my way round the M25 on Monday.

No. The sensible course is to go tomorrow morning. By the time you read this, I will be creeping slowly round Britain’s most congested motorway. Dad may well be gone, and if he isn’t he’ll be very close. So, if you’re on the M25 tomorrow and there’s this fifty year old bag in a knackered Lotus, with the headlights on because the daylight running bulbs are bust, ear plugs in and the music on really loud, looking as if she’s got really bad hay fever, feel free to give me a wave!

In death’s dark vale I fear no ill
With thee, dear Lord, beside me;
They rod and staff my comfort still,
Thy cross before to guide me.

Goodbye Dad. And thank you. It’s been wonderful.

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Can I do this in ten minutes? No? Stuff it then.

Yes, that’s been my motto this week. The Chaos fairies are back and I am clinging on to the hamster wheel of life with my finger tips. Everything that could happen to cause me extra inconvenience and time has happened but on the up side, I’ve been editing, primping and generally adding bits to the books in the new series for ten minutes every morning. And ten minutes is better than sodding nothing. Just.

It’s been one of those weeks when the intervention of unscheduled events has been so bad I’ve been railing and swearing at anything that crosses my path. For example, emptying the bin; while waiting for the plastic liner to slowly eek its way out of the bin in the kitchen so I can take the rubbish out and put a new one in I’ve been shouting.

‘Hurry the fuck up! I’ve got better things to do with my time!’

At a plastic bag.

Yelling at inanimate objects then. Probably not the greatest testament to a stable mind or much in the way of sanity but hey it’s the way I roll.

McCat has caught a bird three mornings running at exactly the same time of day, this morning I was not on the school run and so was monumentally pissed off that I forgot to lock him in for the three quarters of an hour of bird death between eight fifteen and nine am. Although on the upside, at least the last two mornings, while there were feathers to hoover up and blood stains to clean there wasn’t a body. If he has to catch people, I’d rather he ate them. Also, it wasn’t either of our lovely dunnocks (hedge sparrows). Once incredibly common, the dunnock population has declined by 93% since 1970 and they are now on the red endangered list.

McMini has been doing exams, SATS, which seem completely pointless and arbitrary and rather harder work than the o’levels I took aged fifteen/sixteen (the joy of  a June birthday is that it falls right in the middle of your exams). The SATS involve McMini having to be in school for a pre exam breakfast at eight am, which, on the back of two weeks having to be up and dressed and ready for the arrival of the painters at seven thirty in the morning has been hard for me but has clearly been a great help to him so, go school on that one even if it was a bit … bleargh for me.

In addition, I’ve been suffering more knee and heel pain which does knacker me out. I’m sure McOther thinks I’m lazy because I tend to batch getting up to do things. I tried to explain that if he knew he was going to get an electric shock every time he stood up from the chair and went to get something, he would probably wait, until he had several things to go and get before weathering the electric shock. I think he got more of an idea after that. I probably ought to go back to physio because while we think the pain is not necessarily arthritic, I’d like to try and find out what is causing it. Who knows, if we did that, maybe I could make it stop.

SATS involve McMini having even less of an idea of passing time, where he is, what he’s supposed to be doing etc and added to my already disastrously shite levels on this front, we have been well and truly home to Mr Cock up. Lurching from one crisis of our own making to another!

The school, in quite a decent gesture, have done a kind of parable of the talents on the kids. They have been put into groups and given a fiver. They have to use the fiver to buy things so they can make something or sell something and turn it into more. Each group of four is expected to try and aim for £25 minimum. McMini’s group split into two couples, both raised £70 last weekend and the other couple are doing a car boot to raise more this weekend. However, ours went like this.

‘Mum, my friend and I are going to sell lemonade.’

‘When?’

‘Now.’

I look out of the window, it’s five to five on a Friday and it’s pissing down.

‘Don’t you think tomorrow would be better?’

Long and the short, I ring friend’s mum who also agrees tomorrow would be better. I then spend an unscheduled two and a half hours making cakes on the Saturday morning and another unscheduled two and a half hours standing behind a table up the street with McMini’s friend’s mum plus McMini and friend, flogging said cakes to unsuspecting members of the general public. It went well and was fun but after two week’s sleep deprivation – that half an hour between six thirty and seven is important to me it seems – I wasn’t hugely endowed with energy for that kind of thing. And all that standing. I did sit on a wall but a sweet man came out and asked me, in the most tactful, kindly way anyone has ever asked me not to do something, if I would mind not sitting on his mother’s garden wall. My leg hurt for about five days afterwards too.

Spool forward to yesterday when I get a text from the school at four thirty reminding me to send McMini in the next day with £2 to spend at the year six cake sale.

‘Cakey what?’ I cry in horror. ‘Am I supposed to be baking something for this?’

Of course I fucking am. Luckily there’s enough ingredients and cake cases from last week’s impromptu cake sale to cobble something together but it’s all a bit shit.

Where the school falls down is a message in the middle. They’re great at warning you something’s coming up an a month or two, but even two weeks is miles away and you’re head down fighting the crises and fires that are blazing right now. They are also brilliant at reminding you about things that are on tomorrow but, unfortunately, they are singularly piss-poor at reminding you on say … Monday … that there’s a cake sale on Friday. McMini was supposed to do that but a) he’s McMini and b) SATS.

At the end of it all, if the kids have made enough cash, their efforts will fund a trip for all of them somewhere. Sounds good. In case there was any chance of a relaxing weekend, McMini has a football tournament today. Of course he does, poor little blighter, because it’s completely bastard freezing again. And it starts at nine so it’s up at the crack of fucking dawn again. I will have to be very careful to ensure I bring one of our fold up chairs or I’ll be walking like an arthritic John Wayne for the rest of next week. Still it’ll hardly make a difference. I look terrible at the moment.

Heaven knows what’s going on, maybe the stress hormones are high, but I’m getting fatter and fatter. It’s as if someone’s shoved a bicycle pump up my arse and they’re filling me with air, except it’s flab. Jeez, I mean, dressing has been like draping camouflage netting over a zeppelin for some time but today’s trousers, which were perfectly comfortable two weeks ago, are positively groaning at the seams. If the button goes, it’ll fly off with such force that it’ll probably kill someone. I’ll be sent to prison for murdering innocent bystanders with a flab powered projectile. Maybe I’ll squeak by with manslaughter and serve a shorter sentence. Here’s hoping.

At the end of next week it’s half term during which we are flying round the country like blue arsed flies, still, at least we’ll get to have a lie in and after that, it’ll be back to school for a chuffing rest.

Phew!

On the upside, on Friday morning, for the first time in three weeks, I got to set the alarm for seven instead of some varietal of Far Too Fucking Close To Six. I woke up at six thirty, had a wee and retired smugly back to bed for another glorious twenty minutes kip.

Chuffing marvellous.

Do you know, I read somewhere that night owls are more likely to be unhappy or suffer from mental illness than larks. The implication of the article was that if you’re the kind of person who, when left to function naturally, wakes at nine and goes to bed at one am, there’s something fundamentally wrong with you. You’re obviously more likely to end up being mentally ill the article posited because if you struggle to get up early you’ve clearly No Moral Fibre and you don’t fit in with Decent People. At this point, while reading, I was giving the magazine the bird and shouting, ‘Fuck off!’ because it’s bollocks.

If you ask me, it’s blindingly obvious night owls are more likely to struggle. They struggle because the entire fabric of society, of the working day and of completely everything is set up for and favours the kind of smug masochistic bastards who get up at six am, of their own volition, go to bed at eight pm – a few minutes before their children – because they get up too stupidly early to be able to hang out with the Normal Humans for an evening. Not that I mind getting up for the dawn occasionally, it can be very beautiful, but half the joy of it, when I do, is the fact that I don’t have to do it every day.

So yeh, been playing catch up this week even more than usual.

On the up side, the new book came back from the first edit today and in an amazing turn of events, despite bastard Real Life thwarting me at every turn, I managed to go through the edits and make the changes straight away. Those two pictures are the artwork from the covers, the orange and blue one is the cover of the new series, the orange bit will be a different colour on each book. The other one is the cover of a free short I’m going to give away to folks on my mailing list. It’s going to be completely exclusive so no-one else gets a copy, it’s not on sale anywhere else either. Now all I have to do is finish the sequence of hello emails people get on joining.

On the preparing the book front, I’m trying a different editor. She’s more expensive than the ones I’ve used thus far, but she’s local, in fact she goes to my gym and she’s a bit of a word/grammar spud. On the one hand, she charges more, on the other, she charges by the hour so I can ask her to do as much work as I can afford and then stop until I can afford more. Also, she doesn’t have the same kind of waiting list – not for a short story, anyway. Things are looking good so far so I’m quite excited about the work in progress, although I’m sort of frustrated in equal measure because there’s so much homework to do from Real Bastard Life at the same time.

On the Dad front, I had a really good visit this last Wednesday. He was sleepy and didn’t raise his head up but he knew I was there and was pleased to see me because he kept smiling. He smiled and chuckled as I chatted to him. These days, when I see him, I recall things to him that we did as a family when my brother and I were little. He may not remember, I don’t know, but it’s clear that they amuse him. This week it was about being on holiday and finding a field of carrots and how my parents tried to stop my brother and I from pulling up a couple and eating them.

‘It’s stealing!’ Mum told us.

But my brother and I persisted and my parents tried to pretend they were cross but I suspect they were just delighted that we were eating carrots. That memory made him smile. He was alright, and happy within himself, so I wasn’t as worried as I have been. And to be honest, just blogging about it last week helped.

Oh, it’s been half an hour and now it’s time to collect McMini from Boy’s brigade. Apparently he’s going to be painting a pot, I look forward to seeing what colours he’s used by looking at his shirt.

Onwards and upwards! A bientot!

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There may be trouble ahead … #dementia

This week I was going to give you the results of the title poll and show you the new covers and blurbs for my series. But now I have to make chocolate cakes for McMini to sell to unsuspecting victims passers by to try and raise cash for a class outing after their SATS exams are over, so this has to be a brain dump rather than the kind of post I think about.

It’s a bit of a living parable of the talents this. McMini and three friends have been given five pounds to buy stuff to sell, but there are only two in action today and the one with the five pounds isn’t coming so it appears that I must buy the plastic cups and local friend’s mum must stump up for the drinks. There is no publicity material, none of the little darlings has thought to do posters or even price tags … or even about what they are selling. Never mind. We shall see what we can do. The weather is perking up a bit so it may work out quite well. Especially if I end up taking a tray of cakes to the market and haranguing passers buy until they buy one, like some ancient disabled Apprentice contestant. Here’s hoping.

Anyway, when it comes to brain barf the topic at the forefront of my mind is, as usual, Dad.

Dad’s been a bit low the last couple of weeks and it’s been tough. I may have hinted at that.

The thing is, when I went on holiday, I left Dad cheerfully demented, living in the home and convinced, successfully, that his station there was temporary. Unfortunately, he’s become very scared of falling – this may be due to the fact that he kind of collapsed, back in February. That was how he ended up in hospital. So he may have some kind of memory of that. As a result he can’t walk at all and we can’t lift him, which means it’s difficult to take him out, although I guess if they put him into the car, we could take him for a drive. I’ll have to have a think about that. But even if they do, if something happens, it’s very hard for us to get him out so it still makes going for a drive tricky.

It’s strange how people with dementia do remember some things, or hold on to echoes. Case in point my mum. Mum only has a light dose but where it gets her is she will have a bad – or good – experience doing something she regularly does and from then on, conflate doing that thing with it being bad (or good). More on that story … later. Back to Dad.

When I left to go on holiday, early April, Dad was chirpy. He called my name as I walked into the home and as I was having a meeting with the home manager, social worker and some others, I had to go into the office but I popped over and told him that I just had to go to the loo and would be back. He accepted that happily. Meeting completed, he had been waiting for me to come back and still remembered that I was going to come back from the loo even though we’d been an hour. We had a very good visit with Dad. I had decided to visit Dad every other week, so the next week I went to visit just Mum and went on holiday  heartened that they both seemed to be doing well.

Apart from a small blip during the holiday when I thought I’d have to fly home – Mum had a fall and was taken into hospital with a suspected stroke but she was just stiff and cold from lying on the floor against a radiator for two hours. She has an amazing bruise and is in pain but basically a lot better. My dear brother whisked her off to his house for Easter where everyone had a lovely time.

Long and the short of it was, I didn’t see Dad for a month. Sometime in that month, Dad has just kind of … stopped. You see, up until now, visiting Dad has always been like seeing a healthy person, if demented. He’s been full of beans. Yes he dozes but he chats and although he’s completely demented he still makes the running. Dad always knows I’m Mary and understands that he loves me, even if he’s not quite sure where I fit in. Usually, I just let him work it out because it only takes him a few seconds and if he forgets for any longer than that it’s because he’s panicking about it. The only time he has forgotten was a few months ago, when he was still living at home and from the point of view of switched on-ness (is that even a word) was rather worse than now, he asked me who the hell I was and why I was calling him ‘Dad’.

I was a bit stumped, but I reckoned that suddenly discovering he had a daughter might come as a shock at his age so I thought it best to just let him remember in his own time. I didn’t answer the who are you question but just said,

‘Would you rather I called you John?’

‘Yes please,’ he said.

So I did. Within about thirty seconds he had worked out exactly who I was, I made some joke or other and he laughed and said, ‘that’s no way to speak to your father’ and I was able to go back to calling him Dad again. That’s the only time he’s forgotten.

Three weeks ago, just after I’d got back from holiday, when I talked to Mum about going to see him, she told me it wouldn’t be much fun. She explained that he was refusing all food and that it would be lucky if he opened his eyes. I thought it would be Mum confusing one bad visit with all visits. I rang the home to check. It wasn’t.

Yes, they confirmed, Dad is refusing food a lot of the time. They had proscribed a brief course of steroids to try and make him a bit hungrier but his fluid and food intake was very low and he’d lost 15kg in a very short time. I felt very sad and asked what we could do. The manager said that both she and the doctor felt that Dad has probably had enough but to bring things he liked to eat to see if we could tempt him.

When I arrived, I found him sitting in a chair, asleep with his head on his chest. His refusal to eat has caused such a rapid weight loss that he looks like a concentration camp victim. I took his hand and he said, very quietly, go away. I positioned myself so he could look at my face and told him,

‘You know you’ve got a daughter, Mary.’

‘Yes,’ he whispered.

‘Well that’s me, I’ve come to see you.’

‘Oh,’ he said, brightening slightly, and then he closed his eyes and went back to sleep but didn’t take his hand away when I held it.

I offered him Turkish delight, which he loves, and some jelly babies, also a firm favourite. He refused both with a grunt of dismissal. There wasn’t much to do after that so I sat for ten minutes holding his hand. Then I remarked that our hands were getting a bit sweaty and that I was going to let go. He didn’t react.

If I’d thought, I’d have brought some writing and just sat with him for half an hour because I’m sure he’d have appreciated someone just hanging out with him, even if he didn’t have the energy to interact. But I hadn’t.

Unsure as to what to do next, I got out my phone, looked up Gutenberg and read him a Beatrix Potter book that he and Mum had always read to my brother and I as children; the Fierce Bad Rabbit. He made no acknowledgement but Maurice, sitting next to him clearly enjoyed it immensely so at least it wasn’t wasted.

There was music playing, toe-curlingly awful, over produced love songs. Neither songs nor artists were recognisable, it was more of a kind of, ‘your favourite Kareoke artistes sing songs that sound a bit like hits but never were because they’re really shit…’ all with horrible 1980s style electric piano. Pop composed and produced by numbers. Dad hates pop music so I felt very sorry for him but on the flip side not everyone likes every kind of music and there are lots of folks in there, some of whom may loathe the kind of classical music he loves. Even so, it was so awful that half an hour with Dad was going to be a tall order for me. I thought how grim it must have been for him. No wonder he didn’t want to open his eyes.

Truly, truly, I say to you, when you were young, you used to dress yourself and walk wherever you wanted, but when you are old, you will stretch out your hands, and another will dress you and carry you where you do not want to go.

Poor Dad.

On the upside, everyone was up and dressed and sitting in the light airy sun lounge. The staff are kind and attentive, they always chat to the residents and treat them with dignity. They interact with the residents, and one another with good humour and kindness. The staff to resident ratio is good because they are all together. Some stare into space, some sleep like Dad, some are a little agitated, some chat to one another. The atmosphere is happy and if Dad has to listen to a bit of music he doesn’t like sometimes, then, in the grand scheme of things, I’d say it’s probably worth it for the other benefits of living there.

After twenty minutes I gave him a kiss, said goodbye and left. He made no acknowledgement. I cried a lot of the way home.

The next week visibility was at 100 yards max the whole drive down. It was a horrific and slow drive, the A23 was three into one, the A272 was blocked by an accident just as I turned onto it and when I finally got to the tiny lane that leads to the home Dad is in the fucking gas board were digging it up and it, too was closed. Bollocks, I thought, I’ll go have a look and if it’s near the top I’ll park and walk the rest of the way. I was, I’m afraid, a bit sweary with the workmen who leapt out and stopped me as I turned in.

‘How closed is it?’ I asked them. ‘I’m going to the windmill. Can’t I just park half way up and walk the rest of the way?’

They explained that I couldn’t.

‘Then please tell me how the fuck I get up there?’ I ranted.

‘Listen, there’s no need to use that kind of language,’ said one.

I apologised and told them I’d been on the road for three and a half hours instead of two and a quarter, that every chuffing road I’d come to had been closed and that I had to visit my father who was rather grimly unwell. They were actually very sweet after that, probably because it was becoming abundantly clear that I was on the brink of crying copious tears of frustration and that the sweary anger was merely an avoidance tactic. They explained there were diversion signs. There weren’t, or at least, only in the opposite direction, but luckily my phone had a decent signal and Mrs Google knew the way.

On the upside, the visit was better. Dad hailed me when I arrived, we had a lovely chat, I persuaded him to drink some water. He’s still very quiet though and this time they were playing some teeth-gratingly cheerful rock n roll music (again, not by the original artists). He was just being transferred to a chair and I asked if they could put him in another room away from the music. I explained that playing him pop music was a special kind of torture for him. They put some classical on bless ’em. He has been eating ice cream and drinking a bit more apparently. He asked me questions, the way he usually does, and dozed fitfully in between. He was delighted to hear that his grandchildren, on both sides, are involved in plays – Dad was a great actor, really good. He could have done it professionally had he not wanted to be a teacher, instead, pretty much from the point he was old enough to know what a career was.

Anyway, he was delighted as my brother and I are funny but our minis are like Dad and can act properly, which is rather splendid especially for him. He was very aware who they were, delighted they were acting in things and his face lit up when I mentioned them all. So that was grand.

I didn’t tell him that McMini had a nightmare about the Dolmio couple smashing down the door with axes and telling him he was the special ingredient of their bolognaise sauce. Or about McMini’s solution in the dream, which was to beat the Dolmios to death, with our cat’s help. I also demurred from explaining how ‘Dolmio Couple’ has now become a playground game at McMini’s school! I’m telling you though, because I think it’s hilarious and it these McMini-isms and McOther’s wry humour, have probably kept my sanity in tact over these past few years of dementia grimness. But back to Dad.

One of the questions he asked was why he was there, I told him there’d been a leak at home and a flood and that he couldn’t return until it was fixed so he had to stay in this hotel.

‘Fucking stupid!’ he said but he accepted it.

‘Indeed,’ I agreed.

Lunch arrived, which he refused but I told him ice cream was on its way, gave him a hug and left.

I walked out backwards (rather carefully as I didn’t want to trip over any of the other residents) while waving at him. He waved back at me, both hands, big cheery grin. Suddenly he was Dad again, he waved, I waved and we laughed at one another. We carried on until I was too far away for him to see clearly and assuming I’d gone, he put his head on his chest and closed his eyes but this time, he gave off an aura of quiet contentment.

That was better, and after really not having the energy after her fall, Mum finally made it to see him the next day and had a decent visit, herself. He told her he wanted to go home too. But ‘home’ to Dad is actually a house in Eastbourne that he lived in for a couple of years while he was 8 and 9. He can never go there. It doesn’t belong to us. He understands that Mum lives at ‘home’ but doesn’t always recognise the name of the house when we say it. In short he is stuck in some kind of horrific limbo. Mum said she’d happily bring Dad back to live with her again if she thought it would work but we know it wouldn’t. He would be miserable and confused, the way he was before. That’s the epic cruelty of it, because even if the loved ones were familiar to him, the house would be strange and he wouldn’t understand. He’d go completely psychotic again.

Most dementia patients seem to reach this stage. Partly the not eating is about control, yes or no to food and drink are the only decisions Dad has any power over. But also, there seems to come a time when many dementia patients give up and decide enough is enough.

It looks like Dad has reached the ‘enough’ stage. Both the lovely lady who runs the home and his doctor think he has. In some ways, that’s a positive if he is reconciled to his decision. From what I understand, this stage usually lasts anything from a few months to a couple of years. Even so, while I thought it would be a relief to reach it, now we’re here, it isn’t. Instead it’s heart rendingly sad. And I think that is probably because, for the first time, visiting Dad is like visiting someone who’s ill. Not a healthy demented man but a man who is sick, and hasn’t the energy to engage the way he wants. Except maybe Dad doesn’t want to engage much.

A friend of mine whose mother has Alzheimer’s told me how her mum said that sometimes she was exhausted trying to make sense of it all. And I suspect that’s what happens. It just gets too exhausting and they can’t be arsed anymore. To be honest, I hope that’s where Dad is. That he’s all square with the world, ready to leave it and calmly making his own quiet exit.

The trouble is, it doesn’t always feel as if he’s given up. Sometimes it feels as if he’s still fighting but has lost the battle. It feels different. It feels as if he’s broken. Acquiescence is one thing, but defeat is altogether different. All I can hope is that it’s a case, not so much of defeat, as having reached skirmishing stage. Dad rises to the fight of … being … some days, and wins, but maybe, in order to have the energy to do so, he has to let the disease hold the territory on others. Perhaps he’s pacing himself? Or perhaps it’s just that when he can’t be arsed he seems discontent because he’s pissed off with the whole business, which is fair enough, and logical, and not quite the same as discontent. I hope so.

There’s no answer now and few positives to be made of it. I can only pray for gentleness from the world for Dad, or do I mean a state of grace? If he is experiencing any inner turmoil I pray that it will swiftly cease and that he will live the rest of his days, be they months or years, in a state of peaceful, contented calm.

We’re arranging for his parish priest to come and see him. He’ll probably tell her to fuck off, but even if that’s all he does, I am certain it will help.

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Red alert at Ice Station Zebra … And the Pile Howitzer

This one comes with a profanity warning. It’s not that profane but I do mention piles quite a lot. There. Don’t say I didn’t warn you.

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The thing about giving birth is that your dignity tends to be birthed along with your child. Not that I even had to give birth to my lad, having a c-section and all. Except while, after it’s all over, they give the child a rub down and hand it over for a cuddle, it seems that my dignity is still in Addenbrooks hospital somewhere. I’d like to think it’s wandering the corridors looking for me but I suspect it’s more likely to be in a drunken stupor. Then comes the menopause/perimenopause/postmenopause. Ladies, if you haven’t yet you do. Not. Know. What. You are in for. If you have … you’ll be laughing along with this.

Basically, when a lady hits mid-life then, if she has any dignity remaining, trust me, the whole change of life shenanigans will knock it unconscious, drag it away, murder it and bury it in a shallow grave.

Motherhood, menopause and adulting. They’ll be the fucking death of me.

Yeh. I don’t really know where to begin this week. It’s manic. The painters are in. For once this is not a euphemism there really are genuine painters painting the woodwork outside of our house. Yes, I’m sorry folks, it’s all our fault the weather had turned to shite. They’re in for three weeks I’m afraid, an’ all so crack out your waterproofs and thermals. The painters start at half seven, which means I have to set my alarm for half six so that I have some thought collection time between waking up and getting out of bed.

When you have to get up that early, who needs thought collection time, right? Wrong. Why do I need it so badly though? You ask? Well, you may not but for the sake of the point I’m attempting to make here, let’s pretend you did. Er … yeh, why do I need that? Because otherwise a terrible thing beyond our imagination may occur. A rush. Also … brain fog. A rush plus brain fog equals a day comprising one gargantuan balls-up after another, followed by an evening of wailing, gnashing-of-teeth and too much alcohol.

Also it has not helped that since it was constipation and brain fog week last week, it is, naturally, piles, headache and brain fog week this. I confess, the piles bit is, usually, only a mild annoyance but every now and again the little bastards decide it’s time for war.

Naturally, what with it being absolutely the worst week ever for it, this week they decided to declare war. So bad I’ve had to open, ‘that box in the fridge’ and crack out the heavy armour. These things are the mother of all cures, the big hitters and I confess, this is only the second time I’ve had to resort to using them. Privately, in my own warped head, I call them ‘The Pile Howitzers’. Normally their presence, in the box, in the fridge, in the paper bag, is enough to keep the little bastards under control.

Obviously with the painters in, it was inevitable that as well as a hectic week for McMini things would go a bit wrong with Dad, which they’ve done – to the extent that I can’t really look it in the eye enough to talk about it now.

But presumably that’s why this week, of all the bastard weeks I would be forced to do so, I’ve had to deploy the Pile Howitzers. It’s a mis-nomer, too, because it’s more like pile shells. Each one looks like a bullet, made of some candle wax like stuff – I assume there’s more than candle wax in it though. Anyway, these things bear a very passing resemblance to the missiles off one of McMini’s StarWars toys – it’s a Clone trooper transport ship, if you must know – and each one has to be shoved where the sun don’t shine – the medication I mean, not the missiles of scion’s Clone trooper transport ship clearly – after … er … daily motion.

As you can imagine this is not hugely dignified experience at the best of times. But when there’s a strong chance you’ll have to give a painter outside the window, sanding down the woodwork, a cheery wave first, it’s a whole new dimension of ‘interesting’! So as well as needing ‘thought collection’ time, in the morning, I have to have been up long enough for motility to occur before the painters arrive as well, in order that the Pile Howitzers can be deployed safely.

Nice.

As a result of this, we have managed, just about, to make it to the end of the week even if, yesterday, both McMini and I forgot his PE kit. I had to rush back to the school with it. Then, he came home wearing said PE kit having left his clothes at school in the bag. As he’s low on trousers, or at least, as he only has the one pair with knees in, I had to rush back to school with him and get his clothes. When he brought the bag out, I was smart enough to check the contents for once and sent him straight back in to get his shoes. This week has been like that.

Then there’s this morning. Although I’d call this a partially successful session.

Today is Saturday and, like many other small boys up and down the country, McMini has football practise. It starts at half nine so I need to wake up at 8 am or so in order to nag McMini to get ready, constantly, from about then on. If I do that, there’s an outside chance he’ll get himself sorted and ready by about 9.15. Today I was woken at about twenty past eight by a cheery cat who lay on my chest making burrping noises and generally demonstrating how pleased he was to see me. After a brief cuddle he headed off to do Important Cat Things and I went and cleaned my teeth, washed my face, brushed my hair and got back into bed for a moment to warm up. But I was fucking knackered after a week of six hours sleep a night instead of seven. Can you guess what happened next?

Yes. At about ten to nine I woke up. This was not good. Leaping out of bed in my pyjamas I ran down and put the coffee on, whacked a crumpet into the toaster for breakfast – first of two x four minutes – made McMini a cup of tea and grabbed his football kit from the airer, where it has been ‘drying’ since its last wash over a week ago – because I’m not a skanky ho or anything. Mwahahahaahrgh!

Ran up to McMini’s room as fast as the action of arthritically running up stairs while carrying a cup of tea and a football kit would allow and discovered that he was awake. It was he who had released the Kraken cat. Unfortunately, he was on the loo looking at videos on his phone. Fortunately, he was most accommodating about wiping his bum and getting his finger out with the dressing when I told him what the time was (I can only assume he’s all up to date with Dan TDM or that the battery in his phone had died).

In something that must be closely approaching a miracle, McMini got his football kit on in about fifteen minutes; evil, impossible-to-pull-on socks and all. I should imagine the tea helped because I’ve tried the ‘Oh shit we’re late’ approach to getting him up in the morning on many occasions and it’s never worked before. At the same time, I hurled on some clothes, put my face on, dragged a brush through my hair again and ran downstairs. I even remembered to push the toaster down to give the crumpet its second four minutes. McMini requested a tortilla wrap, just the wrap on its own, which I had right to hand. Despite the fact that the morning, so far, was like red-alert at Ice Station Zebra we were rocking this! What was going on?

McOther arrived home just as I was shoving McCat into the box to take him to the vet for his yearly shots. Cat in box, now it was time to find the immunisation card. Could I find it? Of course I fucking couldn’t. Never mind, it was now nine twenty and McCat had an urgent appointment on the vet’s table at half past. McOther was taking McMini to football so I hurriedly kissed the boys good bye and rushed off to the vet’s. Amazingly, I even remembered to take the cat with me.

In the short five minute journey I managed to see sun, rain and hail. Plus there seems to be a permanently gale force wind direct from Siberia or somewhere mind-(not to mention, extremity)-numbingly cold.

Despite a nervous few minutes sitting at the traffic lights which went red just as I got to them, naturally, we made it to the vet’s at nine twenty nine, went straight in, wormed, new card, shots done for another year and that was just the cat (badoom tish). Quick chat, paid … a LOT of money … and went home. I broke the cable for the solar charger I have for my car battery which was a bit of a pisser, but on the upside, I think I can fix it.

Even when McOther rang me at 10.45 to say they were holding the traffic on the main road after an accident, that he thought he might not be able to get from Sainsbury’s to football to collect McMini, and that I might have to, the traffic started to move while he was on the phone. Despite waking up, almost too late, everything had gone according to plan, and rush or not, we had achieved our aim. We were blessed! Yeh.

Mmm … just call me Van Halen.

So here I am now, sitting typing this, breathing a sigh of relief that everything is all done. Then I catch sight of my reflection in the kitchen cupboards.

Now, I may have whinged about my hair before but basically, it’s very affected by what the weather is doing. So when the weather doesn’t know what it’s doing, neither does my hair. So the downside of this? Let me show you.

Yes I’ve been going about all morning looking like the mad bag lady of Ning Dang Po. There’s just no way on God’s green earth that any normal person would look at that and think it wasn’t a wig. Blimey-oh-Reilly. Or perhaps it’s more of a 1980s stadium rockstar. Or is it a cross between Milton whatsisface and Ken Dodd? Ah, if only I was as funny as them! Or am I trying to ameliorate the effects of alopecia with a Brillo pad and some wool? I dunno, I’ll let you decide.

Ho hum, I suppose it could be worse.

Now, if you’ll excuse me, I have to go and put a thing that looks like a StarWars missile up my arse.

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What the fuck do I call my new series and other quandaries …

Easter! What an adventure that was. We had a lovely holiday trundling round France. There was a tense few hours, on our first day at the ski resort when Mum ended up in hospital after a fall with a suspected stroke and I thought I was going to have to fly home. Luckily she was fine, just very stiff and cold because she’d been lying on the floor for two hours. I’m also feeling a little guilty because I just didn’t have the stamina to visit Dad and Mum this week, but on the up side, Mum was in great form. I have just had the new cover designs through for my short story series and for the one I’m going to give away so I showed her those, because she is actually really interested in all things K’Barthan, genuinely too rather than just because she’s my Mum. So I told he all about the batch of short stories I’ve written, and we had a giggle about the plots. Then she and the carer and I discussed titles. And having done that with Mum and Katie (waves at them) now it’s your turn.

Yes, this week, I am going to be talking about my books. That’ll put half of you straight to sleep while the others makes their excuses and leave!

The thing is, despite the picture you may get from my release schedule, and my blog – which is normally about pretty much anything other than my books – I am actually an author – you’ll notice about 99.9% of my posts are labelled, ‘off topic’ if you’re new here, now you know why. I write stuff. And amazingly, after three years in the wilderness, I finally have some work ready for publication. Woot. I’m trying to release it properly this time. I mean, I’m supposed to build a buzz, although, while I’m stoked, I doubt anyone else is particularly excited but I do, at least, have a big enough email list and enough webtastic contacts now to be able to involve my audience in the process. This, again, is hugely exciting for me – probably rather more exciting for me than for them. So at the moment, I’m bouncing around like a rubber ball in a jam jar. We are nearly there. I have the mailing list freebie ready to go, the covers are shaping up beautifully, one story is edited and two more are ready to be sent to the editor. In the meantime, there are conundrums facing me. Three to be precise.

1. The covers.

This is the least conundrumy of the three. When I speced them, it seemed smart to stick with the incredibly cunning plan that I would use the same image and then have different colours – pretty similar to the K’Barthan Series, then, which did that, except book two was set in London so the city was London. Mind you, the city on the other books is London too, although a different bit, but I digress. Also, since drawing is expansive, I want to get the titles, series name and art work finalised first. This stuff costs less if you batch it. I sent the designer various photos and sketches and an outline of what I wanted. This is what he came up with.

New M T McGuire cover; paperback version

New Series, Ebook cover

Naturally, I am completely stoked with these.

OK, so ignore the words on the front, they’re just to give a feel for text type and where it’ll go.

Having read that book covers and adverts with people in them are way, way more effective – if you look at indy book covers you will notice I am not the only person who has read that research – I wanted a figure in the cover, but at the same time, not too much drawing. Since the stories I’ve written are about The Pan of Hamgee’s adventures after he arrives in Ning Dang Po but before the events of the main series begin, it seemed smart to put him on there, complete with trademark hat and cloak, seen from behind because … less drawing and also more scope for ritzy view and a glimpse of the SE2 because … flying cars! The colours will vary so the final item may well be brighter than this. More like the prequel shown below, for example – although this one is still in progress so I’ll probably ask the designer to remove the white outline round the figure.

There’ll be four short stories in this batch, three at around 20k, one at 10k but I’m working on making that one longer so it ties in. There is also a starter at about 12k which I will give away exclusively to people who join my mailing list, or as a free paperback at any events I do. That is one that works equally well as a prequel to both series; the main, K’Barthan Series of of full length books or this one.

So far, feedback on the covers is good but a couple of folks think that although it ties in with the overall M T McGuire brand, these are bordering on a different genre to comedy. There are two ways to fix that. One, change the font or brighten the colours or two make sure the titles are properly comedic. More about this in a minute.

Second thing about the series … I suspect there will be more stories, both about The Pan of Hamgee and possibly about other characters. So this is where the second conundrum comes in.

2. Series Name

To make sure nobody muddles stuff up and that everyone reads everything in the right order, I’ve called the short stories, ‘K’Barthan Shorts’. Clearly, though, since these ones are all about The Pan of Hamgee and others may be about different characters or settings, with different covers, I need to qualify it a bit. I do have ideas for a series of short stories about events at The Parrot and Screwdriver and I’d quite like to write one about that assassination mission Deirdre Arbuthnot goes on when she ends up getting ambushed but manages to escape by blowing up the Grongolian first minister with a lorry full of custard.

So, I was thinking that K’Barthan Shorts would be the umbrella name and then I’d qualify it with a secondary name so it would look like this: K’Barthan Shorts, Misfit Hamgeean: Part 1.

3. Book Names

Bearing in mind the comments on the covers so far, I thought funny titles were probably expedient. Normally, when I name my books I take my cues from Sir Terry since he’s probably the nearest thing to my demographic. He tends to do three things:

  1. Snappy phrases that are already in use – or sound as if they are – such as, The Light Fantastic, Lords and Ladies, or Feet of Clay.
  2. Two words, for example, Wyrd Sisters, some of which are also short snappy phrases, for example, Interesting Times or Soul Music.
  3. One word titles, such as Thud, Nation or Snuff.

With the original K’Barthan Series I went for titles which fell into the first group. Since the stories in this series are shorts I thought I’d also try pithier one or two word titles. They tie in both with the main series and with the free short, Unlucky Dip. In fact they pretty much come between the two. But after some of the comments about the cover, I wonder if I should go the phrases route again, to make the genre clearer. So what we have are the following:

In the one word corner: Jump, Drop, Pastries, Switch/Punched and Flight/Spiced (but spice is a drug here in the UK so I’m a bit ambivalent about using it).

In the two word corner: Night Swimmers, Small Beginnings, Special Delivery, Close Enough, Spice of Life/Blind Flight.

In the three/four word corner: Night Swimming, A Poor Start, Nothing to See Here, A Spot of Bother and Too Good to be True.

What do you think? Your thoughts are hugely appreciated since you are my readers, after all, and what is comfortable, to you, will be fitting to other new, untamed readers who are encountering my books out there in the wild for the first time. To make it easier for anyone who wants to give feedback, I’ve made a quick survey. Which should be embedded, below. If it isn’t, follow this link:

https://poll.fm/10305095

Enjoy!

 

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