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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I love my travel self ...

I love my travel self, I love the kindness of strangers on the road and I love the challenge of trying to capture something so ephemeral on the page. If I do it right —if I research like an historian, investigate like a journalist, question like an essayist, understand like a sociologist, paint character and place like a novelist, tell story like a griot, craft metaphor like a poet, making meaning like a memoirist— it has the potential to change someone’s understanding of the world. And I’m changed too.

Faith Adiele , travel writer.

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Adjusting to this life ...

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Things I love about this much smaller, quieter, life.

Picking flowers from Dad’s garden and filling vases with them, for here in the house.

Washing my bed linen and drying it outside, although it’s Autumn, more or less.

Breakfast.

… perhaps, I finally have my New Zealand breakfast organised.

I love driving up over Three Mile Hill and into the city.

In every place I have ever lived, there has been a preferred mode of transport, a preferred route … always the prettiest way, where possible.

In Antwerp I rode the trams, avoiding some routes in preference of others. Miss 14 and I, as often as was possible, always chose the prettiest route. In Genova, I eventually worked out I preferred walking. In Istanbul, the metro, never the bus. In Berlin, the same. And in the UK, the Underground, and then the Chatterbus, while living in Surrey.

I think, more and more, I understand that I am simply someone who wants to enjoy every moment possible, even the ordinary moments … as opposed to saving up, believing that holidays are the only time where we savour life and seek joy in the little things like the route.

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I have lost, and am in the process of, finding my New Zealand-self. my daughter-self, in these months of moving in with my Dad.

His Dementia/Alzheimer’s gets a little worse every week … I think, sometimes. Other times, he seems to be holding nicely. People who had been watching Dad decline, while he was living alone, say he improved dramatically when I moved in. And I’m sure he did. I think loneliness and boredom, anxiety too, are huge factors in the general well-being of our elderly parents.

He has surprised me with some new ‘thing’ weekly. Most recently, while I was out and about, he phoned to tell me where he was, and to ask me how he would get home. The first time he did it, I was horrified. I thought he’d walked along the street some, and given the condition of his knees, wandering hinted at a whole new level of me needing to be home and watching out for him.

But no, he was looking out through his huge lounge window, telling me the buildings he could see from there. He just didn’t realise he was at home. As he described it, I heard him talk himself back in the Now, and he laughed, saying, ‘This Is my house, isn’t it?!’

So he loses his memory, periodically. Forgets the day, who I am, and where things are. We had a spectacular moment the other day … his pills hadn’t been delivered, he told me on the Sunday. Monday he needed to begin the new series. I was there at the pharmacy, first thing in the morning, only to discover his pills Had been delivered …

So I raced home and began the search, finding them in the linen cupboard, eventually. The same place he, so carefully, put his laundry one day. Forgetting, he accused me of stealing his underpants …

I pick up his medication now. It’s better that way.

But that said, he only has these ‘moment’s, and generally he’s good. And so happy he can still live at home. He shuffles out each morning, groaning over his destroyed knees that can’t be replaced because of his two heart conditions, to get his newspaper and check the world is still there.

And I have to leave him to it, or risk stealing his independence … his reasons for being.

He showers himself, and dresses, with help from the caregivers who come in to put on his pressure stockings.

The care-givers are generally lovely. They give me a little bit of freedom, as I can mostly rely on them. It’s the times when they let me down, usually at the weekend … last minute. I think there are so many out there, needing them.

A little bit of freedom, so strange for this girl who has always tried to wander off and away.

But maybe it’s time I stood still again. I have this book still to write, and it is persistant. I carry it with me where ever I go and so …

So … here I am, like a cat, turning and turning until I can settle down and find that sweet-spot to write. Creating some kind of routine, if that’s even possible, here in this life of mine :-) It’s a much quieter life. I wander alone most of the time but I always have really.

I am learning how to be here.

And sometimes … sometimes I find a little whisper of Genova, and her beautiful ancient caruggi, here in Dunedin, New Zealand.

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Holy Moments ...

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My 'holy moment' breakfast was almost holy this morning ... 

I have my ground coffee, and my little espresso machine is making me so happy.

I had a bagel, as introduced to me by Kim back when I lived with her and Andy in Farnham, and apricot jam (I can't find peach in NZ), and good butter ... 

I have this little $29nz speaker that improves the sound quality of Jack Savoretti, Coldplay, Paolo Nutini and the rest of my playlist on my laptop.

The kitchen door is open because it's Saturday, and the blokes removing abestos at the school next door are at their homes. 

The sun is intense already, the sky is blue, and I have nothing and nowhere I have to do or be. 

This is where I've been reading in the evenings. Trying not to drink red wine but, you know ... sometimes :-)

Days like these ...

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7.30am, and I roared up to the supermarket. Dad had run out of tomatoes, and he absolutely requires them, on toast, as part of his morning routine.

Mmmm, the supermarket doesn't open until 8am.

I wandered along to the main street cafe I used, pre-coffee machine and sat there a while, reading.

I was the 3rd one in those supermarket doors this morning ... 

I’m listening to Jack's latest song, and really liking it..

The foto: I was talking to Dad, in the lounge, after a rainsoaked Sunday and noticed the sun glistening outside on the flowers. I had to, at least, attempt capturing something of the beauty …