Tag Archives: death

A snapshot of blue …

It isn’t always like this, but I’m feeling a bit blue today. Then again, it’s probably only to be expected because I have, as we might euphemistically say, the painters in. But I’m going to take a few moments out to bang on about grief again because I suspect the way I’m feeling is pretty universal, so it might help someone to read it and see they aren’t alone.

As a human, I’ve always approached my life, and my future, with an attitude of mild interest, a kind of, ‘I wonder how this is going to turn out.’ That doesn’t mean I don’t try and mould my destiny at all, but I am aware how many other riders there are affecting the outcome of anything I plan. I hope my actions make a difference. Fervently. But I also think I’d be a fool to think I can realign the stars and guarantee anything about my destiny through my own efforts … well … you know … beyond how I react to what happens.

So my dad died. It happens to lots of people. And I’m OK with that and, more to the point, he was. It was his time, he led a full and wonderful life, he was loved … it was, dare I say it, beautiful.

The thing I am having trouble with is what happened first.

Losing someone to Alzheimer’s is really hard. There’s a strange mixture of emotion at the end where you’re glad their suffering is over but really want them back. There’s always hope, until they draw their last breath, that a miracle will happen and they’ll come back to you, that the gradual extinguishing of the light can somehow be reversed, the damage undone, your loved one returned. That you’ll find them again.

It can’t, although you might find enough of them. Dad definitely came back to us a bit at the end, I am in no doubt whatsoever about that.

They say that you don’t get over some things but that you do get used to living with them. That makes perfect sense to me. I try to give myself gaps to grieve, and in between, I tell myself it’s hormones, and yes, I am looking forward to reaching the stage when I no longer have a cycle, when Psycho Week, Misery Week (which is probably where I am now) Extra Special IBS Week and of course, not forgetting Brain Fog and Constipation Week all come to an end and every week becomes Mary Week. I do have a Mary Week once in every five and it is literally like being someone else, someone I really like.

Anyway, I try to convince myself that I’m busy or tired or hormonal but the truth of it is, I’m just sad. And I guess I’m learning that I have the strength to carry that sadness, which is nice, but at the same time, unfortunately, I’m not quite as strong as I hoped I was. Which is a bit of a shitter.

One of the things you can notice about people, if you look hard enough, is that those who are suffering or damaged are marked. They have an intensity, a brittleness about the edges, a burning brightness to their eyes that acts like a huge neon beacon over their heads saying, ‘Damaged Goods.’

Sometimes, I have to tell people that my dad died recently. It’s cringingly embarrassing because usually it’s part of an explanation as to why I’ve forgotten to pay a bill that arrived around that time, or pay in a cheque etc. I find it difficult to keep my voice flat. The emotion always creeps in and evinces an outpouring of kindness from strangers that is only reserved for folks they are very, very sorry for. Which is lovely but quite mortifying. I also find it really, and I mean really hard, to keep it together in the face of sympathy. No matter how hard I try to be dispassionate, they hear the emotion. I am always hugely grateful for their concern. But at the same time, it’s also difficult and embarrassing because there’s only a finite amount of time about which I can talk about it before I cry. I wouldn’t want people to stop showing sympathy though, or stop being kind. Because for all the awkwardness I feel, it’s also a wonderful and uplifting thing.

There’s very little time for sadness in modern life and even less in mine. Mum has dementia, someone has to run her financial affairs, pay the care team, make sure she’s OK. In some respects my weekly visits are a lifeline for both of us. It is wonderful to be able to talk to her about Dad. We discuss how we feel, how there was nowhere else for him to go, how illogical our sadness is when it was such a good death and when it was clearly a death he embraced. I think it helps both of us. Mum is definitely better than she was but she’s had a bit of a blip recently, which, I suppose, is  another reason why I feel the responsibility a bit more keenly than I usually do, and feel sadder.

Typically, now he’s gone, it seems that my life is full of events and problems that I would have discussed with Dad. Things he would have been able to advise me about so I could have made sense of it all and it would have been OK. Interpersonal stuff. It’s a loss I would have felt badly any time in the last one and a half, possibly two, years but it seems a great deal worse now. I think it would be melodramatic and downright wrong to say I’m sinking but it’s definitely a struggle. And I’m so raw. Oh blimey I’m ridiculously raw and so easily hurt about other things. Everything makes me cry, I reckon if I was walking round with a thistle stuck up my arse I’d cry less.

Politics hasn’t helped. It’s like the loss of Dad’s goodness and humanity, the compassion and empathy in him has taken it out of the entire fucking world. This week Britain has stepped up it’s efforts to make a monumental tit of itself on the international stage. The jury who found Boris Johnson’s proroguing of Parliament illegal have been warned to wear stab vests for fear of nutters who are also pro Brexit.

And the two sides bang on at one another, the left getting all drama llama about Jo Cox so they can tell the right that they are heartless twats who don’t give a shit in a way that makes the whole thing reek of faux. The right are totally unmoved, of course, since the majority of them are heartless twats who don’t give a shit and I really don’t understand why the left felt that point had to be made, since we are all already aware.

In the middle of all this, I’m still waiting to hear someone mention the good of the people. Not ‘the will of the people,’ as decided by a ridiculous sham of a vote to decide which side’s lies were less plausible (but sadly, a vote, nonetheless) not who should be in power, not how much better we would be if x or y was in power. Likewise, I don’t want to hear politicians spouting off in the media for the benefit of sending a message to other politicians via the press, rather than because they have anything meaningful to say to us.

Wouldn’t it be great to see someone in Parliament who genuinely seems to be there to try and make life better for the British people rather than to feather their own nest? Someone who isn’t a plutocrat foisting left wing sentiments they can afford to hold onto people who can’t, or conversely, someone who isn’t a hedge fund manager, wholeheartedly buying into the vileness of the party opposing them; a party which continues to demonise the vulnerable, the disabled, the chronically sick as scroungers and weaklings, quietly passing laws to punish people for their disabilities, or chronic illness, or having dementia like my parents, as if these people are to blame for their own suffering. A party pedalling the view that anyone who is vulnerable is weak and that those who are sick somehow deserve to suffer and are not worthy of our compassion. A party that puts the view that, contrary to the tenets of the Welfare State, those less fortunate, or who have fallen on hard times are somehow stealing for us when they are given help. A party which is punishing the elderly for having savings and being careful, stamping on the fingers of everyone working or lower middle class who has dared to put a foot on the ladder. A party which is quietly dismantling the welfare state and the NHS while everyone is too distracted to notice by the circus of shite that is Brexit and all that goes therewith.

We need normal people in politics. Now. Because at the moment, for the most part, it’s just a bunch of rich, entitled pricks doing what they like. On all sides. Their wages alone put them into the top 6%, the expenses some of them charge probably put them into Fortune 500*. Only 8% of Labour MPs are working class. We need a proper mix and we need to hold them accountable, the trouble is, voting doesn’t seem to work so I really don’t know how we do that.

* That was a joke even if it does ring true.

All I know is that watching the different parties competing to out do each other over the lowest depths to which they can sink I feel like something inside me is dying. It’s like grief has taken my reality filter out and I can see every crack and fissure and smell the foetid pus below.

But then something will happen that snaps me back.

For example, today I had to explain to the lady in the building society that I’d failed in some duty of admin because the summons arrived while my dad was sick and dying, or possibly while I was on holiday just before, or maybe in the six weeks previously while I was sick as a dog with a massive temperature and road testing different varieties of antibiotics to get rid of a persistent chest infection. The minute I fess up to her, I know she’s seen the rawness. My orange neon ‘damaged goods’ sign is flashing. She nips out back and comes back with a leaflet.

What to do in a bereavement, it’s called.

‘There are numbers in the back,’ she says. ‘And your doctor can help you too.’

My doctor? Shit.

Is it that bad?

Is it that obvious?

Am I more damaged than I think?

OK so watching my father go mad was pretty horrible, but I genuinely believed that once it was over I’d bounce back. It’s happening but it’s not a bounce and I’m aware enough now that in many ways I will never be the same. I thought it would be a lot faster than this and I thought I would get over it all. I’m not and it’s going to be slow. I guess the hard thing is having to keep going, having to carry on paying the carers and doing the pathetic amount I do to keep things running – the care and gardening team do literally ALL of it but I still find my few duties tough. I probably need to look what happened to Dad squarely in the eye but if I do that right now I’m undone and I can’t be undone, because … Mum.

Or maybe I’m just humiliated that another person has seen the extent of the damage, noticed my brittle cheerfulness and angular edges. I am worried and grateful in equal measure. As I try not to well up at her compassion and kindness I remember what Dad always said,

‘And this too shall pass.’

Maybe that’s the thing that’s so hard. Grief is amorphous. It oozes about inside you like a liquid and leeches out where and when you least expect. There’s no stopping it and no answer. You just have to ride the storm and wait until you are used to it, or it goes. It’s not as if I’m the first person who’s lost a parent, or the last … It’s just … hard.

On Wenlock Edge the wood’s in trouble;
His forest fleece the Wrekin heaves;
The gale, it plies the saplings double,
And thick on Severn snow the leaves.

‘Twould blow like this through holt and hanger
When Uricon the city stood:
‘Tis the old wind in the old anger,
But then it threshed another wood.

Then, ’twas before my time, the Roman
At yonder heaving hill would stare:
The blood that warms an English yeoman,
The thoughts that hurt him, they were there.

There, like the wind through woods in riot,
Through him the gale of life blew high;
The tree of man was never quiet:
Then ’twas the Roman, now ’tis I.

The gale, it plies the saplings double,
It blows so hard, ’twill soon be gone:
Today the Roman and his trouble
Are ashes under Uricon.

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More thoughts about grief …

Vimy Ridge 100 years on

This week we’ve been visiting a lot of First World War sites. On balance, this was probably less than smart, so soon after my father’s death. But in another way it was cathartic. Grief is a properly odd thing and sometimes it does you good to take a few quiet moments to have a snivel and let it out. You can’t sweep it under the carpet and pretend it’s not happening. That doesn’t help.

However, that said, it does tend to pop up in weird ways when you least expect it. Case in point, Dad. When Dad died it was the culmination of nearly fourteen years worrying about his mental health. He was calm, totally ready and for those few days before he left us, it was as if he’d come back to us. After his total loss of reason, and the psychotic stage he had returned to us a fair bit, in the home. He came out of the small boy stage and was a grown man again, struggling with his affliction in different ways.

In those weeks, he was calmer and seemed happier but looking back on it, perhaps it was because he’d decided this was the end of the road and resigned himself. I worried that he was fighting and losing. Looking back on it, I think it more likely that he was coming to terms with things and I was seeing the light and shade of his various moods as he worked through it. The thing about Dad’s death though, was that it was a really, really good one. People who loved him were with him, reassuring him and he was a man of faith, and while I’m sure he appreciated that reassurance, he probably didn’t need it.

It was a relief, for him and us, because it was the end of his suffering. It may look callous saying that but I remember waking up the morning after Dad had died and feeling sad that he had gone and that there really was no going back now and at the same time, also feeling as if an enormous weight of responsibility had been lifted from me and feeling happy for Dad (although as a Christian who believes there’s some kind of after life that might be easier for me than it is for some folks).

Now, I don’t know what I expected from the grieving process but it seems most sensible to accept it’s there and roll with the punches when it pops up. But I’ve noticed two things which might help other people.

Thing one: No matter how good the death, no matter if death was the only place to go and no matter if the death was a good one, you will feel incredibly sad. Not only that but if my own experience is anything to go by, you will feel way, way, sadder than expected.

‘But it’s your dad! Of course you’re sad!’ I hear you say. Well, yes, but I’ve spent the last eight or nine years, at least losing little pieces of my dad each day, and I’ve spent the last five years grieving for those pieces of his personality, facets of his sense of humour, things that gradually faded until I could no longer resurrect them. There was a horrible point where the jokes we used to have suddenly stopped working.

‘I don’t know why you think that’s so fucking funny,’ I remember him saying about what I’d thought was his absolute favourite joke between us. ‘Stop saying it.’

Various people have told me that, after an illness, you get the person back. I think I’m too brain fogged to get much back, my short term memory is completely shot, just yesterday I was chatting to McMini and he reminded me of something we did together, when he was a child, an event of which I have absolutely no memory. That is quite frightening because such a total and utter memory loss has never happened to me before. No matter that my diagnosis was hormones, I have some pretty deep set misgivings, in my own mind, that I have dementia, myself. That said, a friend (0lder) who suffered depression when her kids were growing up says there are huge tracts of their lives she simply can’t remember. She put it down to the medication, but it must have been stressful, and I’ve been pretty stressed for at least eight of McMini’s eleven years, maybe I it’s just that. Yeh, I’ll cling to that hope. If it isn’t, I just hope I can hold it together until Mum goes, or even better until McMini hits twenty one. That would be another eight years. Mmm … fingers and toes crossed.

What I was trying to say, after that considerable tangent, is that I haven’t got the memories back really, I still can’t remember anything much before the dementia (Dad’s) but I do have a much better conception of what he was like when he was firing on all cylinders; his cheekiness, his sense of fun, the things he loved and the things that made him laugh. I can remember his humanity, his compassion, his kindness – partly because his behaviour was the antithesis of many public figures today, not to mention the current behavioural ethos which seems to be that we should each be as big a cunt as we can be because it’s our right and we ‘shouldn’t take it’ from other people.

Which brings us to Thing Two: I guess the moral of this is simply that even if you are expecting it to be weird and trying to be open, not fret and accept the nature of the beast, grief still pops up when you don’t expect it and surprises you.

But after a death when it’s really a release and the person who died was clearly at peace and happy to do so, I guess I assumed I’d mourn less perhaps, or at least differently. I wasn’t sure what to expect, but when you’ve been losing a person for so long while they’re alive and grieving their loss has already been going on for some years I suppose I thought that the grief of the actual death would be … easier?

Or to put it another way, for all my trying to be open minded and take it as it comes, it seems I’d assumed that there’s a finite amount of grief and that I’d used up a good half of it while Dad was still alive.

I was wrong.

That’s probably worth remembering. Meanwhile, for now, for me, it’s head down, give it space whenever I can and wait. I’ll get used to it eventually.

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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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