Living with Dad, and His Dementia

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I was raised by women who were subserviant to their husbands, even if their husbands didn’t deserve this gift of devotion. It was all about the era and the culture, down here in New Zealand. And I admit it, the men were as much victims of this way of thinking and being, as the women.

And here I am, back in that world - Dad’s world, attempting to be gentle with the old man he has become, while fighting his unconscious demand I be a particular kind of New Zealand woman.

Martyrdom is big here. I can’t do it anymore.

And so I am learning to be gentle while respecting my boundaries. It’s interesting.

At first, I wondered if I was somehow channelling Mum, and Nana, and all of those women who seemed to love their men more than they loved themselves. Those men who didn’t know how to be grateful because they were taken care of by women … women who could have been so much more than simply being their wives.

And I thought I was channelling their revenge, or some thing, because it was such a perfect storm that brought me home when I came. There were so many factors and the timing was perfect. But mum was never unkind. She loved this man. He made her crazy sometimes but she loved him.

I am strong now, and quietly confident that this is an okay state of being for a woman. Years lived in Europe have extracted the poison that my upbringing had filled me with … the martyrdom, the subservience, the knowledge that it was risky to be too visible, too clever, too curious.

But I’m learning it’s not about revenge or anything unkind - because being strong doesn’t mean a person is unkind. I think, perhaps, I am here, carrying those women who went before me in my memory, while learning to be the kind of woman who is free of their shackles of tradition and culture in their era.

I’m not, by nature, an angry person. I prefer gentleness and kindness where possible but some days, I have had to fight the old ways, the expectations, with all of the strength and courage I found while living in Europe.

Sometimes, it has made me fierce.

I wouldn’t be doing Dad, nor myself, any favours, if I martyred myself on the cross of his old age but finding that place where we’re both comfortable has been a huge learning curve. For both of us.

I’ve always flown, he has always stayed home.

He is an anxious controlling man, and I’m no longer anxious, and gave up control years ago. I have lived an alice-in-wonderland kind of life. If I were controlling, most of the things I’ve experienced simply couldn’t have happened.

So Dad and I have had our battles, as we learned to share this house with one another. When he swore at me or had his moments of the old rage, I swore back and showed him, I too could be angry but preferred not to be. I cannot bow but I will take the most gentlest care of him. And I will stay for as long as I can because when I moved in, I knew I was changing his world to such an extent that he would never be able to live alone again.

Over the months I have been here, I’ve watched his Dementia take bigger bites of him and learned to celebrate (or breathe a sigh of relief) when he returns. Although, each time he’s gone, the return is such a relief that it’s only when I stand back, I see that he has lost a little more.

His new ‘normal’ is quite fluid. I think that’s how I stand the gradual decline. Celebrating his return from the ‘cloudy’ place he sometimes gets lost in … laughing, when we can, over what he did when he didn’t know he was in his own home, or he buggered up the tv so badly with remote controls he had forgotten how to use.

Life has become about telling him what day it is, and writing lists on how his day will unfold for him. When he has his afternoon beer, his dinner, and when the care-givers come to help him dress and undress … this is all written down.

Where I am going, when I’ll be home, my phone number … these things also go into the big daily diary I gave him for Christmas.

I try to censor his mail before he gets to the letterbox, as bills make him worry. He’s forgotten that Sandra, my sister, takes care of those with his bank details. Most nights he tells me where to put his empty pill container, up there on the windowsill. And I laugh, telling him ‘yes Dad’. Or snap a little, Dad, I don’t forget things..

Everytime I think I’ve beaten the old habits, forgiven the battles he and I used to have, I realise I’m not perfect … and I’m probably never going to be.

Dad is this formerly controlling man who now fights more with himself than with anyone else. And I think that might be the hardest thing. The control he is losing over his life. Controlling the lives of others wasn’t actually his goal, he only needed to control things so he was less anxious. Less fearful.

I’m learning, so much … and, so far, it’s okay. It’s not time for him to enter the locked wing that is the Dementia wing in any elderly home. It’s not time for him to live with other people who share his illness and are in various states of being. It’s not time. I hope I will know when it is. I’m trying to keep us both in a good place … in the best place we can be in these Dementia days.

And he is grateful. He wasn’t at first. He thought he was helping me, with somewhere to live. But these days, it’s as hard for me to leave him alone as it is for him to be alone.

It’s an interesting journey. And not the worst I’ve ever taken. I recommend it but just be sure you realise, who your parents were are not who they become when Dementia arrives. You have to be prepared to know them all over again. The disease exposes things you might never have understood.

I never knew that Dad’s anger was more about his sense of inadequacy, perhaps, than anything else. I hear it now, when he swears at himself, in frustration in the bathroom, because dressing is so difficult. He is so angry at himself.

And he gets anxious. I never saw that before. His control was all about making his world as safe as he could. Now he warns me if it’s going to rain, or storm. I love rain. He thinks I’m insane, and it upsets him a little.

But slowly he’s gifting me his trust. I’ve been asking for it, again and again. I have promised him that I’m not going to lie to him, that I don’t want to cause him harm or worry. The trust also means a commitment to making his life better. And then, in making his life better, I need to also keep an eye on how small my world is becoming.

In other news … I’m grateful my laptop is still working. I dropped it last Sunday and it split open, and some of the inside was exposed. I’m leaving it out here on the kitchen table, hoping Dad won’t get frustrated with the time I spend on this magic machine that serves as my work place and provides entertainment, and ‘tidy up’. So far so good.

I’ve been playing with the pyramid called Maslow’s Hierarchy of Needs, renaming it Di’s, seeing what I consider important after moving countries, yet again, and leaving so much behind.

Dad just shuffled past the kitchen door, pushing his walking frame, stopping to tell me my hair is a mess. Ohdeargod. I said it’s how it always is. He said, you’re a wild woman. I said, yes, you had best be careful.

He thinks I should get it cut. I tell him, I think he needs to think about keeping these thoughts in his head … He finds it all hilarious.

In lovely news … I found a secondhand reading chair the other day. For just $20nz. I carried it home from the shop, not too far, and have placed it in the corner of my bedroom. I don’t sit in in enough but the intention is there, and winter is coming.

But anyway, it’s Sunday morning here. The Catholics will be here soon, bringing Dad Communion. I should dress and get on with my day. He needs me to go out and hunt down some shaving cream and tomatoes. I need to do housework.

Ciao, from down here at the bottom of the world x

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