A couple of weeks ago, someone shared one of my posts of Dementia-related whinging on Facebook – this post if anyone’s interested – and it got an interesting comment.

There is ample opportunity for me to have misconstrued here but, as I interpreted the comment, I think it basically said something along the lines of that we don’t really know why some folks get to die suddenly or well and others get something a bit more operatic; by which I mean they get the real world equivalent of twenty minutes of singing and an encore after a wound that should have killed them instantly. The gist was that ours is not to reason why.

The poster went on to say, if I’ve understood correctly, that if it was God’s will that they linger who are we to argue, and to just have faith that it’s all happening for a reason, that it is not our place to judge or begrudge them their time in the twilight zone, and we can give them that time. That this process of slowly withdrawing from one world and preparing to step into the other is clearly of spiritual importance in some way and we should accept our part in it with grace. Thinking about it, I should probably post what was said. This is the comment in question.

It’s a kindly, wise comment and clearly meant to give comfort but instead, reading it, I feel as if I am being chided for my lack of faith, and for my selfishness in feeling that fourteen years of this is a tad fucking long. I found myself wondering how much of the poster’s own care/worry marathon they had completed, two years? five years? seven? ten? I’ve reached the stage, now, where I worry that the pressure of worrying about my folks may do me in; that I may not out live my parents. I mean, I can’t die! It would kill them. Then there’s the whole cancer thing. Have you noticed how many people who have been through a tough patch like this one end up going down with cancer just as they get right again? I dearly hope I avoid joining them.

Clearly the commenter has a great deal more grace and faith than I, but I confess, the thing about the comment that really threw me was that I had no idea that anyone could so completely and utterly miss the point of why I post all this stuff.

Bearing that in mind, I thought I’d better explain to clear things up! Because I accept my father’s fate is clearly not a swift and merciful death, trust me, there is no mercy in dementia. Indeed, if this is the greatest mercy they can wish for I shudder to think on the horror of any alternatives my parents have missed. Likewise, if they have to suffer this now I hope they have manifold blessings in store. My Father has been losing his memory the whole of my son’s life. Even when my lad was born in 2008, Dad couldn’t really be left alone. It began before that, in 2004. Fourteen years is a fuck of a long time in anybody’s book. It’s probably my fault and I’m the one being punished. I expect I snogged too many boys or wanked too much as a teenager or something, but I digress.

It’s no good my railing against fate, it merely wastes energy. I just have to bite the bullet and get on with it. I will endeavour to give my parents as much quality of life and freedom of choice as possible, and I am trying to make this twilight time for them a time of gentleness, peace and compassion. That my brother and I aim to do that, however painful it may be for all of us, is moot.

But you know what? Just because my brother and I are doing what we hope is the right thing, it doesn’t make it any more fun. And I doubt the feelings I have experienced as I’ve watched my father lose his mind over fourteen long years are any different to those of other people in my position. And that’s why I write about this.

When I write about Dad’s sickness on my blog, it isn’t about my brother and I doing the right thing by our parents, it’s not even about our efforts at trying to. That’s a given.

No.

This is about what tenderness and mercy to one member of a family costs the others.

Similarly, I doubt the dismay I felt as I realised, three years ago, that my mother also had dementia, is unique. If there is anything merciful in this perhaps it’s Mum’s dementia. Because I do not know how she finds the strength to endure some of the stuff Dad says to her and at least if she forgets, she won’t know what she’s lost.

The posts I write about my father’s Alzheimer’s and my mother’s dementia are not here to give you answers, they’re here to show you my reactions. Because I think I’m very average and I suspect most of us feel the way I do but may not admit it, not even to ourselves. Well if that’s you, I’m writing this so you can see that your reactions are normal. The things you think about the situation that are so dodgy and shameful that they almost hurt? You aren’t alone.

That’s the only gift I can give to people suffering through this. Thousands of people have come before us, doubtless many thousands will come after. You’re not alone, I’m not alone, we are united in this trouble.

When the dementia patent in your life does something that completely shocks and repulses you, it’s OK to recoil, to feel sad, hurt, horrified and angry. It’s OK to feel those things because it’s natural, and yes, it’s OK to feel trapped by their neediness. The key is not how you feel but how you act when you are with the person affected, the key is not whether you are disgusted but whether you show it. They no longer understand or even realise that their actions are unacceptable. Much of what they are doing is caused by them feeling frightened and alone, you can reduce the number of melt downs, if you can get alongside them and have them working with you not at you, but if you fail, well that’s OK, because there’s always next time, when you can try something else.

Also, attitudes to dementia are changing and I write about things that happen to us which reflect that change because I want people to see it and know about it. I want people to realise that if they want to take a dementia sufferer out somewhere they should go right ahead. It’s just a disability. You don’t have to hide them like a shameful thing but at the same time, you need to have an idea of what you are all facing. I describe our journey to help you understand what is coming as you embark on yours.

When I was a kid, if someone got Dementia it usually went something like this. Person gets dementia. No-one is allowed to know it’s all kept secret because it’s a Bad Thing. Person does something a bit strange in public which a handful of folks hear about but which is not ever passed on but is just mentioned as, ‘that time at …’ or something similar. Person disappears from all social life. Five years later, you attend their funeral. I used to wonder what happened in between. Now I know. And I want other people to know and understand. That, yes, it is horrible, but it can also be uplifting. I want people to know that they needn’t feel afraid, that it is unbelievably harsh but they will cope.

While Dad can still enjoy the company of others – and he can most days – I want my dad to be active and social. To be able to go out and Mum with him. I want him to be able to go have lunch at the pub or whatever. Amazingly, they attend a huge number of social events but it is getting more and more difficult now. Bless them, a decent number of his friends now come to him, or if they’re no longer mobile, ring him.

As I said, attitudes are changing, although it takes a certain brazenness to be a carer. For example, back in 2011 when we were on the ferry to the Isle of Wight. Dad went to the loo and got a bit disorientated while he was in there. He came out with his zip open and his cock out. A lady sitting nearby rushed over to him, just as I noticed and ran over to him, too.
‘Oh thank you, I’m so sorry,’ I told her when I got there.
‘Is he yours?’ she said.
‘Yes,’ I said as I turned to Dad. ‘Dad, we need to pop back in there for a moment.’
‘Oh dear, do we?’
‘Yes,’ I leaned over and whispered, ‘You’ve forgotten to do your flies up.’
He guffawed and we thanked the lady and went back into the loo.
‘What am I coming to? I left my cock out,’ he said when we got inside. We giggled some more and he made some joke about Winston Churchill’s reaction when someone pointed out his flies were undone, ‘The dead bird does not leave the nest!’ my Dad said in his best Churchill voice. Giggling, we sorted it all out and we started back to our seats. We passed the helpful Lady so I thanked her again. She gave me a big smile and said,
‘Not to worry, we have one of our own at home!’
It was all done with a wink and a smile at Dad, too, to include him. Naturally he joined in. People are kind these days, when you rock up somewhere with a dementia sufferer.

Likewise, when your father clears his throat, leans over the side of the chair and gobs a massive steaming greenie onto the kitchen floor in front of company, as if that is the most normal thing in the world, a certain brazenness is required. I reckon it’s fine to use graveyard humour to make light of it, or any other form of tasteless joke that will get you through the surreal horror you’ve just witnessed. We avoid jokes at Dad’s expense in his presence and we avoid them where we can if we are not in his presence. However, if treating your father with the decency and compassion his humanity affords him to his face means laughing at his child like antics, and calling him Spoilt Bastard after the well known Viz character behind his back, I say knock yourself out. Because if you can’t do both then do what it takes behind the scenes to achieve compassion and kindness where it matters, when you’re with the person.

Recently, a couple of visits have gone badly and my father has been unremittingly vile to me, not to mention Mum. Some days, he doesn’t know who we are any more. He doesn’t remember that he loves us. Except that he is always pleased to see me initially. However, my gentle, good-humoured, loving father – with the wicked sense of humour – is now, quite often, just wicked. He refers to me as a trollop, or a fucking stupid woman, or sometimes, for variety, a stupid fucking woman. I take no offence since he refers to nearly all the females around him like this.

But I miss my dad. I miss my mum. There is much more of Mum there but we have still lost enough to miss. Dad, is still there too, but we have to dig hard for those precious shiny glimpses of treasure. And I’m raw about it at the moment because at my Uncle’s funeral last week we prayed for the sick and when we did that we prayed for Dad and Mum. And it was the sweetest, kindest thought, a truly lovely act on their part, and so touching, and I nearly lost it, and I realised how much grief there is; an enormous, bottomless black pit of the stuff at the centre of me. Too much to look at head on. Too much to acknowledge. I can see it all the time out of the corner of my eye. Look it in the face and I am undone. And as the male lead says in one of my books, ‘I can’t be undone.’ For the sake of my parents and also the rest of my family, I have to hold it together.

And the weird thing is that even with this huge bottomless grief, this mourning that will end in death, but which, without a death, cannot end, even though it’s fourteen years old and huge and dwarfs me somehow, I do hold it together. If I have any kind of faith, I suspect that’s where it counts. Because I’m no saint. I have no grace. I’ve never been one to cope well with a long drawn out process. I do not know how I keep my grief about my parents in its box, but it happens, and I doubt the strength required is all coming from me.

In the face of this, I’ve come to believe that there are really only two things that matter when dealing with dementia:

Number one. Trying to hang onto who the patient was and what it was in him we loved. We look out old photos, read letters, memories from the boys and girls he taught. We do whatever it takes to keep in touch with the real person who is living under that disability. We do it because it’s the only thing we can do to hold onto him.

Two. On the days when Dad is vile to me; like the time when he grabbed the wee bottle from my hand on Sunday and tried to throw his warm piss in my face, shouting, ‘Get that thing off me you bloody trollop! I’ve finished, you stupid fucking woman!’ Or yesterday when he did the same thing to the carer in the loo, all the while continuing to wee copiously down his trousers and onto her foot, proving conclusively that he was NOT finished, not by a long chalk, it’s important to keep a sense of humour; to laugh about it – and we did laugh because what else can you do? I mean, it could be worse, it’s not as if I had to hide behind the sofa while he searched for me with a knife (genuine dementia story, luckily, not mine). It’s also important I keep a firm enough grasp of who he is. I will always try to treat him as the man he was. Dad is in there, somewhere. I refuse to believe he is wholly the man he’s become. Because that is not my father. That is Alzheimer’s.