It always seems to me a little strange to grieve in public. This isn't that. My dad died, and I thought I'd share this. I wrote this, a piece about dementia and mental illness, about four years ago, long before he got the rest he deserved. It was for a publication intended to help people. Sadly, the publication never saw the light of day. I think it's as good a eulogy as any, and if it helps anyone dealing with any form of mental illness, then my work is done. So, this is for my dad, Derrick Saunders. But I guess it's for me, and you, too.
As always, love you. x
A Man to Walk the Mountains With
Some things are hard to write about, even for a writer. Some things are hard to think about. You have a choice, though. You can do neither. But there’s ways to deal with things, and ways not to.
If you’re an adult, then you deal with the job in front of you - hard or easy, you deal with it.
I became a man, an adult, I guess, not when I had children, or hit twenty, or even thirty, but when my dad went away.
Last year, my dad was diagnosed - after a long struggle - with frontal lobe dementia. He’s in a home now. It’s pretty much the most hardcore home you’ll find for people with dementia. Only, it’s not just dementia. It’s also very much like psychosis, acute, every day. He never did anything by halves.
He was a good man, all his life. Married for over forty years, with two grown boys, me being one of them. I always thought of myself as a boy, even though I was thirty-seven with three children of my own, when he was finally taken away.
I knew there was something wrong with him for about ten years. For instance, I knew there was something very wrong with him when I saw him wandering around my parents’ garden, carrying an axe, looking vacant.
As a son, as anyone, you don’t want to take an axe away from someone with that look in their eyes.
That’s the thing with frontal lobe dementia. He’s unpredictable. He’s dangerous. He never used to be, but you can’t take your eyes off him now, even though he’s under twenty-four hour supervision with people to look after him.
But what’s it like to care for someone who’s that far gone? My mother knows. She lived with him and was terrified of him in the end. He was a stranger in her house, a dark stranger. She described it once, saying it was as though there was a demon riding him.
The toughest day of my life, maybe, was when I turned up at their house to find the police outside, confiscating his guns. They were only air rifles, but dangerous nonetheless. He told the policeman it didn’t matter if they took his guns, because he could always find another way to kill his wife...kill my mother.
People have tougher stories, I don’t doubt, but that’s pretty tough to take. The demon inside him made him, makes him still, a dangerous man. Some days he doesn’t know who he is, let alone who anyone else is. But there are days when he does, and on those days he’s cunning. He’s sly, and you daren’t take your eyes off him.
But before he went into the home, life was hard. And the terrifying thing is, mental illness runs in the family. It’s not something most people talk about, and some people are wary of being open in public about their own personal demons. I’m not. I’m bi-polar. My mother suffers from Chronic Depression, as did my grandmother - it runs in the family.
You know what the most terrifying thing to me is? To end up not knowing who you used to be. A hardworking man, a polite man, who was always decent to women and to children. A good grandfather and father and husband.
It was early onset, too, which made it worse. Caring for him wasn’t just about the tough stuff on us, but because he was dangerous, it was caring about all the other people, too. When he first went into a home - the wrong home - we feared for the people caring for him. They didn’t know. They didn’t understand.
And in some ways, the hardest thing is this: he has no choice. Dementia crept up on him, caught him out. He’d have killed himself, rather than suffer this. I know he would have.
He nearly died a while ago with a blocked colon. He’s got a bag on now and a stoma in his stomach feeding the bag. He has no idea how to change it so some days it bursts, or slips.
Why did they keep him alive? I don’t know. I see him, occasionally now, and I wonder. I wonder every time, because I know he wouldn’t want it.
The writer Terry Pratchett made a documentary about assisted suicide. Dad would’ve gone for that, had he known. But the choice isn’t his to make any more, after the demon got a hold of him.
But at a certain point, living with someone with dementia - caring for them, watching them go - it becomes about the carer and ceases to be about your loved one, because there is absolutely nothing you can do for them.
At the time he was getting ill, I had a young child, a teenager, and a baby on the way. The stresses on someone like me, with my own illness, were massive. The stresses on my mother, too, were almost unbearable.
It was, without a doubt, the hardest year of my life. But luck isn’t personal. It may feel like it is, but it isn't. It’s just shit luck, as my granddad used to say, and it happens to everyone. It feels like your world is ending. The depressive cycle I went through lasted for over a year. That’s a hard thing to deal with. Dealing with your own troubles while you’re trying to deal with everyone else’s. And that’s stressful, too. But you’ve got to give yourself a break. Take what time you can. Take a coffee break, or have a cigarette. Flick through a magazine, sit in the garden, or take a walk. I think taking some time for yourself is important when you’re caring for someone else, and many people don’t get to do it. Caring’s a full time job, after all - doesn’t matter if your loved ones are in a home. Caring doesn’t stop. Maybe the bathing, the changing of dressings and the cleaning up stops but the caring just goes right on, and it’s okay to feel relieved when they finally go on, to a home, or to the grave. Guilt’s natural - did I do all I could? You did. Everyone does. It’s all you can do, and if you can’t care for someone at home until the end, then that’s all you can do, too. There never is any reason to feel guilty. Guilt’s insidious and spiteful and it’s not constructive.
For me, I’ll be thankful when he goes, because then I’ll know that finally he’ll be at peace and his demon will be laid to rest with him.
People feel for those who we watch die in slow, horrible increments, but those who watch die a little, too. Some of the wonder goes out of life. You cry, sometimes. Sometimes you’re angry, and sometimes you're so sad you feel nothing at all. My mother tried to commit suicide. A half assed attempt, I think, but any attempt is serious enough. How low must she have been? How low can people get?
So, as you read this, maybe you're thinking my life’s not so bad. Maybe you're thinking your life’s worse. We all have pains to bear, loved ones to lose. I watched my granddad consumed by cancer, my nan die in the hospital, and now I'm watching my dad die a little every day. People in those situations think they can’t cope, can’t take anymore.
But you can. You always can. There’s always one more thing, one more hardship, because life is tough. It’s not easy. You never wish to be in anyone else’s shoes, because their life is tough, too, and if it’s not hard for them right now, at some point, it will be.
But don’t wish it away. Cry, if you feel the need. Rail and rage against it. Let your anger flow, or be calm. It makes no difference in the end.
As I said, I’m a writer. My first book will soon be published, and I’ll dedicate it to my dad. He’s still alive, but he’ll never read it, because he can’t read anymore, not really. He doesn’t even know who I am. In some ways, that’s easier. But I’ll honour him, dead or alive, because once he was a fine man.
Another writer was fond of saying that man’s endeavours meant little in the long run, that the mountains would forget that people ever walked the Earth. Sounds depressing, like nothing ever mattered, but there’s the other side, too.
Love matters, and wonder. I think wonder gets you through. There’s wonder in every day, even when you’re so low you want to break your legs just to feel something. But even when people are in pain, there’s beauty and splendour. And memories, too.
People die slow, and people die fast. People live on in us, though. The mountains might not remember, but we do. I hold onto those memories, and sometimes they make me laugh, sometimes cry, but they’re a rock that’s bigger than any mountain reaching for the sky.
The writer with a thing about mountains, who I met once - a man named David Gemmell - had another phrase he used often in books. "He was a man to walk the mountains with." My dad was a man to walk the mountains with, and I’ll hold onto that, while I watch him fade away. And when he finally, blessedly, passes on, it will be those memories of him, and that love, that will let him live on in me.