Tag Archives: dementia aftermath

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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