Tag Archives: dementia

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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Grief

Today, I’m a bit strapped for time. I was hoping I’d find something I’d started in my drafts folder that I could just finish off. Unfortunately I didn’t. It reminds me of a story the priest at our church when I was a nipper once told, about a German colleague called Hans. Hans had endured an extremely busy time so a week came when he was able to kick back and relax, which he did. All he had to do the entire week was write a sermon for a service he was taking on the Sunday.

However, when our mate Hans sat down to write, he found himself completely devoid of inspiration. He looked up the readings for the Sunday but remained uninspired. He tried the whole week’s readings, but they, too, left him cold. He eventually procrastinated, until late on the Saturday night, when he thought about it and still found nothing. Then he remembered the point in the New Testament when someone, is it Paul? talking about the Holy Spirit says something along the lines of, ‘don’t worry what you have to say because the Holy Spirit will speak through you.’

Brilliant! Of course! Hans thought, that’s it, the Holy Spirit will speak through me. Thank God for that! He knew he’d be fine. He put down his pen, closed the notebook and went to bed.

The next morning, still no inspiration. Never mind, the Holy Spirit would speak through him, he thought. As he climbed the steps up to the pulpit finally, something popped into his head. Was this the spirit speaking to him? Yes, surely it was, but unfortunately, what it said was,

‘Hans, you have been very lazy this week.’

Like Hans, I have been very lazy. Or at least, I have not left the time required to write about the things that are inspiring me, so I thought I’d have a quick word about grief because I think it’s a topic to which I can do the most justice in the shortest possible time!

Grieving is a weird thing.

When Dad died, he was totally calm and at peace; absolutely unafraid. I felt almost happy for him because I knew it was the right thing, the only way forward; on to the next adventure.

Yes, he believed there is something in us that goes on, and I do too. This is mainly because the corpses I’ve seen have been so strikingly inanimate, so very much things. Like a car without driver, or a bicycle without anybody to pedal it, a body without … whatever it is that animates us … ain’t going nowhere. And when you see one, it’s very, very clear that there is something else important, something that’s missing.

So he’s gone. And although I wouldn’t have him back the way he was for anything, because he had lost his quality of life and he was losing himself at that point but that doesn’t stop me missing Dad.

A while back, McMini went to two nursery settings. One he was fine, the other thought he had problems and contacted me to explain that he was not able to sit still or pay proper attention to instructions, etc. At the time, I was fully prepared to discover my son was dyspraxic or dyslexic in some form or other, so I wasn’t as fazed as they were. At that point, Dad was forgetful but very much with us in all other respects so I asked his advice.

If your son can’t sit still and listen to instructions it means they’re not engaging him properly. I’d say the problem is with them not McMini. What does the other setting say? Oh, I hadn’t asked. I did. They told me that if they had a three year old boy in their charge who was actually able to sit still for ten minutes THAT is when they’d consider he had a problem. They told me McMini was very advanced in many ways, bright, cheerful, very articulate and able to do things like walk on a balance beam with an ability that was well ahead of his age.

This side of Dad, this being able to ask him advice and chat things over with him and get the same reply he’d have given pre Alzheimer’s; that didn’t disappear until, literally, the last year and a half of his life. It’s one of the things I really missed in the latter stages and despite thinking I’d probably done that bit of grieving somewhere along the line. It turns out, now he’s gone, that I haven’t. I miss that just as keenly now he’s dead. Perhaps, that particular loss is compounded by the fact that Mum has just reached the stage where, while still able to chat things over and give advice, she is no longer able to do it every time I see her.

Oh dear … this is what we’re up against.

McMini, meanwhile has been affected. He’s very scared of death, he’s just reaching that stage in life where you realise things aren’t cut and dried, black and white, and simple the way they are when you’re a kid. The point when your history lessons shift from, X did this, to we haven’t a clue WHY X did this, which is much more interesting, but also much harder, because unless someone can actually talk to X and ask them, we’ll never, ever know the true why.

McMini deals with his fears through the medium of dark humour. Some of it, though dark, is still funny. Some of it has gone beyond dark, to the point where I’ve been questioning whether or not he is actually quite disturbed. Anyone remember dead baby jokes when we were kids? (How do you make a dead baby float? Two scoops of ice cream and one scoop of dead baby.) Start there. Example, he has decided he is an Inca lord in his Minecraft game and every time it’s evening in the game, he sacrifices some villagers to the sun god. I get it, what people do to one another is scary and this trivialises it and makes it less scary, especially in a time where politics is so angry and the right wing has a seemingly relentless grip on power and is about where the Fascists sat back in the 1980s.

As a child, back in the 1980s, I remember being completely shocked by the Second World War and struggling to get my head round the atrocities of the holocaust, of how decent normal people allowed this to happen. I remember making many, many jokes about Hitler, the Third Reich etc because the whole idea of concentration camps was so gargantuan and horrific. Such immense evil was unimaginable, and also fascinating. And furthermore, very real, because I could talk to anyone over the age of about sixty and they would have been involved in it.

Clearly, in the current political landscape, where campaigning is little more than the art of organised bullying; of uniting a group of people against another group of people, convincing one set of people that another is inhuman as Goebbels described it, I’m in the privileged position of watching it happen a second time. These days, I have a much greater understanding of how Nazism came about. But back then, in the 1980s, when racism, rather than main stream, was tantamount to proclaiming yourself a massive shit with no mates, it seemed beyond understanding.

However, while McMini’s father and I reckon that, for the most part, this is just a phase, we have been warning him, for some time, that he is walking a very narrow line and that he should step back from this and rein the really sick stuff in. He hasn’t, since he has friends who share his fears and find the same release in poking fun at murder, evil etc. Bear in mind he has seen an elderly woman being abducted in broad daylight – she was looking into the back of a van. ‘You can get inside and have a closer look if you like,’ said one of the drivers. She got in and he slammed the door then he and his friend drove off laughing. We never got to the bottom of what that was. It didn’t help that I thought it was part of a crime weekend as it was just before the Christmas Fayre and I only realised it wasn’t when said crime weekend took place the following March. We reported it to the police but it was way too late by then. God knows what happened to that old woman or who the blokes in the van were.

It all came to a head at school this week, with an extremely inappropriate text sent by McMini, by mistake, to the wrong person – who was upset and whose parents were extremely upset. Nobody was horrible about it, everyone basically said, ‘your lad is lovely and we know he’s lovely and this was clearly a mistake, but he’s over-stepped the mark.’

The head master rang me, said that McMini was a little tearful about the things that frightened him and explained that he was trivialising them because it helped him feel less scared. He suggested McMini should talk to his father and I about his fears. As I have suggested to McMini many times, myself, to no avail.

It felt like a big parenting fail. Because the first person I’d have talked to about this, as a child, would have been my Mum or Dad. But I was different, and as such I was often bullied, whereas McMini, though he is also different in exactly the same ways I was, is not bullied. Indeed his unique take on the world is celebrated and loved by his friends and teachers alike, which just goes to show how splendid they all are, but also means he follows the normal path; of unity with his friends and rebellion against his parents. A path with which I am completely unfamiliar.

As a result, I can’t help but feel that I have failed him, because I hoped our relationship would be as close as mine with my parents. And while it is in some respects, he was too frightened to talk to me. Which cuts a bit. And of course, throughout his period of obsession with death, killing, murderers etc over this last couple of years, I’ve so needed to talk to someone, myself, someone who can tell me whether or not my son is deeply disturbed or just going through a phase. And that’s where grief gets you, because the person who would have done this, is Dad. And he’s gone. Forever. And the other person is Mum, but that part of her has gone, too. Double jeopardy.

In the end, it seems to have turned out OK. McMini’s humour will always be a little dark and possibly a little edgy and outrageous. That’s fine, I mean, mine is. We both of us love to shock he talks about death and murder, I talk about periods, the menopause and other ‘ladies things’. And I guess I have had that reassurance that he’s not nuts, that it’s just a phase and a way of exorcising his fears. But it came from his headmaster which was a bit chastening.

And the grief … well, the escalation in dark stuff is his and the complete over reaction to it, hell, my complete over reaction to everything that’s mine. My anger at the way people are just giving in to propaganda and allowing themselves to be manipulated into hating others. My frustration that they’re so fucking stupid, they’re letting the kind of rich, power obsessed, bastards who want to keep their faces ground into the mud deflect the blame for all the shit we’re in onto frightened, desperate, vulnerable people (either British people already living here or migrants from overseas) who have nothing left and are asking for help (just look at the fringes on the Brexit debate; both sides and the way the behaviour and views of those fringes has somehow become the main issue) that’s mine.

Or to put it succinctly, grief comes out in all kinds of weird ways, and it often catches you blind side. You won’t always expect it, and it will often knock you off your feet for a moment. I have no answers, no coping strategies. Real Life leaves no space for grief, but somehow, I think those of us who are grieving have to make some. You just have to let it out sometimes, and let it run its course. And I know at the moment, I’m too fucking busy, which is why it’s doing my head in. But I guess, we’re all like that, and if those of us who are grieving accept that it’s there, at least we can be prepared … sort of. Clearly I need to be a bit more like my cat and just chill.

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Angry

Real Life. Don’t you wish it would just fuck off and leave you alone sometimes?

I wondered about posting this but I am so bloody angry. Really. I am tired of the petty shitty meanness of my fellow countrymen and women. Their inability to use any imagination and appreciate another person’s point of view, their willingness to swallow propaganda without thinking. I’m fed up with fucking Brexit, with the EU behaving like an arse and the idiots in charge of us ignoring the potential of the commonwealth and instead pandering to the US who, I’m afraid, royally shafted the UK after WW2 and the current administration is, quite clearly, rubbing its hands with glee in anticipation of doing it aagain. But our government and influencers don’t seem to have noticed, or maybe they don’t care, more likely they’ve the kind of investments that mean there’s some personal cash in it for them somewhere down the line.

You see, if you want people to pay tax, they have to actually get something for it, all of them, not just the rich, or just the poor, everyone. And while we do get some things, a lot of other stuff has disappeared. What the government’s austerity plans teach us is this: Get up to your neck in debt, live for today, save nothing for tomorrow and have anything you want whenever you want it on HP. It’s best not to have any real money because at the end of your life, when you’re ill, they’ll take it anyway. Get into debt and your healthcare will be free at the point of delivery. Sure it will be on the terms of the NHS or your local authority but you won’t have to pay a bean for it.

Today, I was reading about the Brexit party arriving at the European Parliament. They turned their backs to show their disrespect for Europe when Ode to Joy played. It seemed utterly ungracious and it really pissed me off. These people hate Europe and hate the European Parliament but they’re happy to take a very large wage and a lot of expenses to go there and be rude. I remarked on facebook that it was so Kevin and Perry it was embarrassing and I really wondered how much more petty they could get.

A level-headed friend countered the argument with this.

Which makes sense.

However, while the sentiment on the T shirt is put fairly robustly, it says, ‘I don’t like this.’ The turned backs say, ‘I don’t like you.’

That’s my issue.

The turned backs make it personal.

That’s been my issue with the way the Brexit campaign was conducted all along. Them and us. Hence the polarisation. I think both sides of this debate are as bad as each other now but originally that kind of behaviour was only noticeable to me, as a punter watching it, from the Brexit side. Now that may be my perception but it’s how it looked to me.

And that’s not because the people who voted Brexit are nasty, either.

It’s just unfortunate that the leading, noisiest, pro Brexit leadership are conspicuously unpleasant even for politicians and yet also seem entirely typical for the party currently governing us.

We’ve got that bloke who’s trapped in the eighteenth century and looks as if he lives in a coffin, jeez I don’t even remember his fucking name. He probably thinks all these underprivileged families should be putting their kids down coal mines or up chimneys to earn cash. Obviously those of us who don’t earn or inherit astronomical wealth like his are too stupid to succeed so if they’re living in miserable penury it’s their fault. He doesn’t care if there’s no NHS, he’s fucking loaded and he probably pays for all his medical care anyway so he doesn’t have to go to hospital with the proles. He probably thinks that people who can’t earn enough money to pay for their medical care are failing to do so because they’re too stupid. I expect he thinks that’s their problem and if Brexit and Britain all goes tits up, well, he can just move to another country.

Then there’s Boris who doesn’t give a s*** about anything but Boris, and is such a massive cockwomble that he actually managed to go to Iran to negotiate for leniency for that poor woman who’s been accused of spying and instead blurted out that she was spying by mistake so they’ve put her in prison and thrown away the key. Well done. Great going. And has Boris shown any regret, any humility, or compassion or the tiniest, remotest hint of remorse? No, of course not! He doesn’t care because he’s an entitled fucking cunt.

You can just imagine him behind the scenes saying, ‘she’s only a woman, who gives a shit.’

And lastly, we have Nigel Farage who is a thinly disguised Nazi who has said he will leave if the UK goes tits up after Brexit … and like Hitler with his Jewish grandmother, he has German immigrant antecedents – for all his anti immigration stance – and has ensured that his children have German passports allegedly.

As someone who feels, personally, utterly betrayed by the conservative party and everything it stands for, Farage, Boris and the vampire bloke seem to be the epitome of everything I despise about the right wing in politics. Their sense of entitlement, their bombproof self love, their we’ve-got-money-and-we-can-cope so f*** you attitude really pisses me off.

Likewise the rest of the Conservatives, I am not impressed with their shafting people who have lived good lives and worked hard, or about the destruction of the national health service, which is only going to accelerate once Brexit goes through, about the fact that looking after people who are ill comes down to the name of the disease they have and if a disease has the wrong name, the person suffering from it will be left to fend for themselves or give everything that they have, including the house they live in, to pay for care which, again and again, has been proved in the high court should be delivered free.

To me Brexit is less about leaving Europe and more about handing our country to people like Boris, coffin man and Farage. And that worries me far more than any mere implications of leaving the EU. I suppose what I’m trying to say is it’s not Brexit itself that does my head in, it’s what it has unleashed.

They’re career politicians and politics is all they’ve known. If the rest of us were just too stupid to follow their lead and go into politics too it’s our own fault. That’s the attitude that comes over.

Fuckers.

Brexit, or at least, the shit that goes therewith, is one of the biggest arguments in favour of time travel I’ve seen.

How else have we ended up in a situation where a vacuous, self-serving, charmless, philandering yobbo like Boris Johnson is likely to be Prime Minister? And worse, where people are actually convinced he’s a decent bloke! If you made this shit up nobody would believe you. ‘Nobody’d be so dumb they’d follow that guy, he’s a twat!’ My readers would say. Yet here in Real Life nobody thinks it’s strange … is this a hex?

And what’s the alternative?

A man who admires the American model of healthcare, where the hypocratic oath comes second to payment. Where people willingly put payment for treatment in the hands of the insurance industry, an industry which, essentially, is there to scare you into giving them money and then, if something happens, find reasons not to give it back. I have American relations, I actually know someone who watched a man lying on a gurney left to suffer. He’d drunk bleach by mistake. He had no health insurance because he was poor so the hospital refused him treatment. No-one would touch him. He just lay there, writhing and groaning in agony. That’s zero fucking ethics any way you look at it. My relative did have insurance, so luckily he was wheeled in for treatment before he had to watch the man on the gurney actually die.

How fucked up does a nation have to be before it allows that? And how fucked up does another nation have to be to think it’s a good idea, and dismantle one of the best healthcare systems in the world to change to the insurance model.

Do we, in Britain, really want that? Are we that fucking cold?

Well, yes according to the Tory party – because compassion and empathy are for wimps aren’t they? They’ve been educating us for a while now haven’t they? The NHS is failing because evil people are coming to Britain from abroad and draining its resources. No, but a lot of people coming in from abroad fucking work there. It would fall on its arse without them. Then there’s the retirement age being pushed further and further back so it’s harder and harder for young people to get a job is because old people can’t let go of them. They’re fucking skint, no pension yet and they’ve got care fees to pay for their other half …

Here’s another one they’re peddling; everyone on benefits is milking the system, the disabled are freeloading bastards, they should work like everyone else. Yeh. Good idea, because you know my dad who worked all his life, paid taxes, and saved up so he and Mum would be OK in their old age. He became disabled, so he was a freeloading bastard in the end. Scrounging benefits from the state after a life time paying tax. Disgraceful!

Fancy my Dad expecting the state to honour its promise to care for him when he was ill. Sorry chum, your illness has the wrong name. You should have seen this coming and taken out an insurance plan against care fees. If he’d had a benign frontal lobe brain tumour, which would have produced exactly the same symptoms, my Dad’s treatment would have all been free.

Oh dear, John. You didn’t think you’d get to keep a penny did you? You’re not rich enough to be allowed to keep any. You have to be pushed down and kept there, your children too.

And while we’re at it, my Dad paid tax on his work pension, hang on though, it was taken from his wages, which he paid tax on, so it’s taxed twice. What?

And what happens to all the people who have grown up being promised free healthcare and aren’t insured, or people who’ve been disabled from a young age, so aren’t insured? Damaged your knee as a nipper? Won’t get any insurance on that. What happens to them? Oh hard luck, I’m afraid you’ll have to live with crippling pain because we’ve changed the rules. Yes, I realise you’re going to spend half your fifties in a wheelchair but you can only have two new knees each side so you can’t have one until you are sixty.* What will you do if you’re a fit and healthy seventy year old and you can’t walk?

I’ll be in a wheelchair! But I won’t care half so much if I’m fucking seventy as I do now you stupid Tory winnit! I’ll have bastard Alzheimer’s by then anyway.

* (Subtext, each one lasts for ten years, with any luck after a decade of excruciating pain, you’ll have died of some stress induced illness before we have to fork out for the second one). That’s the basic NHS strategy, only treat them at crisis point, don’t do anything preventative because with any luck they’ll die first.

Sometimes, I am just weary with the endless, grinding awfulness of it all.

The latest one … Mum only has a certain amount of cash to pay for carers. When that runs out -and it will, soon – we only have two ways forward.

  1. Persuade Mum to move somewhere smaller with less overheads and upkeep and pay her care fees with the cash from the house sale.
  2. Get planning permission to build all over Mum and Dad’s garden to up the value of the plot and get an endowment mortgage so she can stay where she is and still pay her care fees.

If she runs out of cash before the end, the local authority will not allow her to stay in the house. They only fund care in an institution and she will be forced to sell her house to pay for the fees. As I understand it, forcing her to move from her house and sell it isn’t legal. Forcing her to pay for care isn’t legal. After all, the NHS still says it’s free at the point of delivery and as I write this there isn’t an ‘if your illness has the right name’ caveat tacked on the end Animal Farm some-are-more-equal-then-others style. Once our new Prime Minister is settled in post, doubtless there will be.

We’re welcome to go to the High Court to prove it. But we won’t because it takes years and we don’t have years, do we? The politicians and NHS managers who decided to withdraw free healthcare for dementia sufferers know this of course, and they also know that watching someone you love slowly losing their mind is one of the most strength-sapping, soul-destroying, utterly cruel experiences available in the gamut of human experience. They know you won’t have the mental energy or capacity to fight them, they know you’re weak from carrying everything. They know that it’s all you can do to keep everyone’s heads above the water. They know that if they try to kick you into submission, you’ll go down.

Seriously? In this day and age. After the fall of the Berlin Wall. When we are supposed to be enlightened. When we are supposed to have learned where Nazism takes us and instead what are we doing? We’re going backwards. We’re trying to convince idiots that the world is round, that evolution is a real thing and that the holocaust actually happened. We’re losing our empathy, our sympathy, our compassion. That’s where it starts. With people glorying in their ignorance, with extremists undermining main stream news and others actually believing the hype. With people so nuts they even believe Australia isn’t real! What can you do in the face of moronism like that!

This shit can only be someone fucking with the time-line, right?

I am also still wading through the admin plus all the sundry admin associated with my dad dying. Jeez. Getting there on that one. It’s a case of writing a list of tasks and setting myself one thing a day.

On the up side, I needed a special number from the land registry to take Dad’s name off the house ownership. I was a bit pissed off at having to pay for information but OK with doing it. However, I didn’t know which bit of information I needed to purchase to get the number so I rang them. I was amazed to find there was a report a death option on the menu so I pressed the button and spoke to a lovely lady. I explained my predicament and she gave me the number without my having to pay. So there are times when it pays to find a phone number.

Likewise the lady I spoke to at the Department for Work and Pensions when I had to cancel Dad’s attendance allowance really couldn’t have been kinder or more helpful. She explained that I may have some outstanding to pay and was genuinely apologetic when she explained that it might take as much as a year to receive a request for this money. In the end, it didn’t. But what was so refreshing was that she understood that a sudden bill for several hundred pounds is enough to put people living on the edge into debt and into serious trouble.

In my journey with Dad, the people who work in these departments, and the social workers whose job it is to implement the shitty rules the Government makes have been lovely without exception.

It occurred to me that maybe, if every MP was forced to spend a month living on benefits, or the minimum wage, or working in the call centre that runs the benefits help lines they might learn some humanity. I guess I’m just raw, because I’ve lost my Dad and I’m beginning to remember who he was and realise that he was a giant compared to most of them and had more wisdom and empathy in his little finger than all of these bastards put together. But even if these hideous people were given a dose of reality it wouldn’t help. They’d just dismiss the experience, or say it was easy. And as for adding money worries, stress and angst to the painful business of watching someone they loved going slowly insane … well … for that to cause a blip they’d have to be capable of loving someone first.

Don’t mind me, I’m just fucking, fucking angry. It’s probably a grief thing.

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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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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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