Life After Living With Dad ...

You have adapted and thrived in different countries, communities, and circumstances. You have the ability to forge relationships and understanding. You’re determined, creative, resilient and resourceful. You don’t need to tell your whole story in a letter. Tell enough to intrigue them, you hemisphere-jumping, continent-crossing traveler.

Veronica McCabe Deschambault, writer, artist, editor, wrote about me.

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We are now entering the days ‘after’ the months of caring for Dad.

The days where I begin again. I’m searching for work, for a home …

I have been moving out into the rest of the house, for the weeks that I can continue to live here … previously I had restricted myself to my bedroom but then Dad was admitted to a local rest-home, quite unexpectedly.

You see, he was scratched by Mark, his tabby cat, and the wound became infected. We were working on it, with the doctor and antibiotics, with the District Nurse coming in twice per week, with the care-workers who helped with his pressure stockings watching for heat or spreading redness.

One night, I heard Dad moving around and, by then, his mind was slipping more often. Nights were restless for him. I went out to see why he was in the lounge. It was almost midnight. He was freezing, he said, as he turned on the heater.

For some reason, I missed the big clue and filled him a hot-water bottle, made him a hot cup of tea, and got him back to his bed.

His breath became laboured. And, very quickly, I thought I was losing him … one frosty misty night in the middle of winter.

I called the ambulance and they came, eventually. I called them back, just to check because Dad was struggling to breathe, and time has a tendency to slow down when you’re waiting for someone to come save your Dad.

They diagnosed his high temperature, almost immediately (how did I miss that), and listened to his chest. It was fluid-filled. He was in congestive heart failure.

They were great, filled him with all kinds of drugs, put him on oxygen, and rolled him out to the ambulance. I went with him.

13 hours later, a bed was found in the hospital, and Dad was in for a few days and I went home. It was a little like having jetlag, after 30+ hours awake. But it was good, it felt like he was safe and secure, and I was off-duty.

The fever passed, they stopped the antibiotics in ER but he stayed in hospital more than a week, as they pumped him full of a drug that drained the fluid from all over his body.

He came home but he was never the same … for all kinds of reasons.

He had loved the 24./7 presence of people, there in the hospital. Dad has always been a very social man, and it very quickly reached the point where he would call me, if I left the house for more than an hour. My world was already small. It had became simpler not to go out in the evenings, simpler not to go out for too long but this was more of a strait-jacket existence. I was exhausted.

He was more confused, as the Dementia - probably made worse by anxiety, when alone and those phone calls were about where I could find him when I came back ‘to pick him up’.. But he was always at home, he was simply forgetting. He would forget where his bedroom was. His dinner routine. Everything, just sometimes.

He wanted to go home … but he meant a return to childhood. It became more and more stressful but we were coping. Adjusting.

We were fortunate. The powers that be came in to assess his needs, after his time in hospital. He was worse than we realised. The assessor made a phone call and 5 days later, Dad had a place in a local rest home - 2 weeks of respite care.

To my relief, he accepted that we both needed a break but then the rest home situation became like a runaway horse. I hadn’t imagined admitting him, and he was still adamant he wouldn’t go … then he was in.

These days, 3 or 4 weeks since admission … it is taking longer than I had expected, for me, to accept it. I struggled with guilt, had I tricked him? How would he cope? Could I have done more, held on a bit longer?

Meanwhile, there is Dad, generally thriving.

He has a gang of armchair friends. The staff are telling me he’s lovely to deal with, ‘a great sense of humour’. And this man, who had built his life around routines and regimes that couldn’t be messed with, is slipping into his new life with ease.

And I am still visiting him, on or two times per day. It’s a lovely place. Small, just 33 residents. Routines that delight Dad … especially when they involve food. He feels safe, and warm, and secure. He’s not lonely any more. He is taken care of by others and his anxiety is quickly dealt with.

Slowly I’m learning how to let go, that our time of sharing his house is over and I’m just his daughter again.. His Dementia continues to advance however he still knows me. I introduce myself, whenever possible, as his granddaughter. He’s in there, immediately, saying ‘No, you’re my bloody daughter!’ Seemingly outraged that I would even try that :-)

The words I began this post with … Veronica reminding me of life before Dad. Reminding me I can start over again … how many times have I done it already.

And so here I am, waiting for the next wave, as I organise his ‘stuff’ for a downsize, and the sale of his home to pay for the rest home.

I’m learning. Always learning.

Writing a new Resume, deciding on Cover Letters, dancing the dance of starting over again.

Here’s to the next part of the adventure.

Breakfast Rituals ...

Rituals have been, and still are, all about finding ways to survive, and thrive, in the different lives I have lived.

I was making my breakfast this morning, thinking about the fact that putting together a perfect breakfast has always been my first task, after moving countries.

Finding the bread I liked best, the coffee, the butter, the jam … or whatever it was that I loved in the early mornings of those other lives.

In Istanbul, it was Trabzon bread. A big soft loaf of loveliness, that surely wasn’t good for my body but had the power to save my soul on the bad days.

In Belgium, the UK, Berlin, London, then Surrey, I’m not sure I remember the details of type but Trabzon bread stuck because it was so good, and so very difficult to name, back at the beginning of my time spent living in that ancient Turkish city.

I looked on a map just now, having never really officially named the smaller shopping mall I used when I lived in Ataköy. Searching, I found the Plus Mall, and I’m almost sure it was there, in the bakery section.

I remembered how naive I was, shocked to realise that sugar, flour and butter, had other names in other languages. Names so different to those I knew, that it was like starting over. Words like tereyağı for butter, and şeker for sugar.

I lived very lightly there because I was divorced and alone, just trying to find the money to go home and buy a house and stability for my daughter and I. My ability to create more than a breakfast ritual was limited by my lack of courage, and by the fact I was completely alone in that new life.

I had friends, and I knew people but I was ashamed of how little I knew. And, back then, I was mostly too embarrassed to ask for help.

Although, I suspect it was there that I became addicted to feeling slightly drunk, or high, as I learned to navigate a world so unlike mine, that life was mostly surreal.

I was Alice, and the rabbit holes became part of my everyday life. The gunman loose in the school. The wheel that fell off my taxi. The woman who fell past my 5th storey balcony. The salesmen I used to sit chatting with in the Grand Bazaar. My walks through the city, when I moved over to Mecidiyeköy, from the Taksim Square Metro, through Galata, over the bridge and into Sultanahmet.

Then I met a Belgian, stopped in Antwerp … on my way back to New Zealand, married him, and stayed for 10 years. My breakfast ritual was simpler there. I tried and discarded more than a few coffee machines. I had fallen in love with Genova by then and so I loved good espresso, more than anything

I tried so many different breads during those years. My ultimate breakfast was an espresso, with a croissant, butter and peach jam. It was there, as the end of my marriage loomed, that I had to add blood pressure pills to my morning ritual.

In the UK, Kim introduced me to bagels. Another first. Another love. Espresso and bagel, with butter and jam, for that year I spent living in Portsmouth and Farnham, London and Oxshott. I picked up a Nespresso machine somewhere along the way because when decent coffee was too far away, Nespresso did the job on those mornings.

And then came the summer I was offered the chance to take care of a friend’s cats, over in Italy, in that city I had fallen for way back in 2008.

Terrified, I said yes. Gave my up income and moved to Genova, a city that closed over summer.

It was sometimes a dark time, out in the suburbs, a little bit terrified about what I had done.

How would I get home to NZ if I had made the mistake it seemed like I might have made?

But the city saved me. As it always has, just in the nick of time.

My breakfast of choice became walking through those medieval streets to one of 3 favourite bars, for a brioche alla crema e caffè.

Genova gifted me the holiest of holy breakfasts. My breakfast on the terrace, back when I had a room in the palazzo on Via Cairoli, was probably the best of my home breakfasts. Equal, perhaps, with my breakfast sitting out on the steps, with the water of Otago Harbour just across the narrow road, back when I lived at Broad Bay, in Dunedin.

This morning, I was making my breakfast and realising, my ritual is failing me here in Mosgiel. I don’t feel any joy in it. It feels empty. I’m not sure how to fix that. I can’t for now.

The espresso I drink here, comes without Roberto’s smile at the bar on Via Garibaldi; without the conversation with the people at Douce, and the greeting at Pasticceria Caffetteria Arleo, before going up to spend days with Marc.

Genova gifted me the best of so many things. Breakfasts too.

It is my place, if I could choose.

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A Crazy Couple of Weeks ...

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I made the first insurance claim after someone drove into Dad’s car, in The Warehouse/Countdown carpark, in South Dunedin.

I was so annoyed. The offender left no details, neither massive shop had cameras in the carpark, and it was going to cost us $400nz to have the dent and scratch repaired.

But then, I was driving home on 30 April, using a turning lane when the vehicle that was meant to give way to me … didn’t.

She slammed into me in the dark and, fully present, I can still remember the lights and this massive cacophony of sound, as she hit the driver’s side on poor little Percy Fish, Dad’s Mazda Demio.

Mr 7 said to me later, on hearing that Percy Fish would probably be written-off … Percy made the ultimate sacrifice for you.

He was right. If I had been hit either side of the actual point of impact, that wouldn’t have been me, climbing out over the passenger’s seat to escape.

I escaped injury, mostly. My head ached for a few days, and I was definitely off-balance but life is leveling out again, and I’m working on all kinds of ‘things I must do’ projects.

We need to find a new car. I think I might have done that today but we need all the details to come together as soon as is possible. So that’s a work in progress.

My little brother, Kim, saw me trying to save for a new laptop. My Dell had done a massive amount of work, over a number of years and I was using an external keyboard and mouse. I had dropped it recently, having hurt my back, and the laptop’s innards were spilling out.

I was turning it on using a pen … applying a gentle amount of steady pressure, and praying a little, each time.

Kim, happy to know that I’m here with Dad, mentioned he had a spare laptop no one at his place was using and voila, that turned up at the weekend.

Now I can spend what I saved on setting the new one up. The ‘new one’ that is exactly like the one I have here on life-support. So that’s something.

I liken using this new one to how people must have felt when electricity first arrived :-) It’s so much simpler than all the pieces, and processes, previously required.

Autumn is here. The morning’s are becoming colder, although we haven’t had a full-on frost yet.

And Dad. Well, he comes and he goes. We had quite a challenging period recently, one that had me thinking he might need to move to 24/7 care but no, he returned, and is as good as ever … kind of.

He started physio on his destroyed knees and, oddly enough, it seems to be helping.

He still loves the RSA. I still love it too. The people there are good people and sitting there, at the blokes table, listening to them chat and mock, or asking their advice on electricians (the bathroom light exploded, into a million pieces, over my head the day after the big night-time accident), and where to find a replacement car … on a budget but reliable.

I’m living on mushroom soup, freshly-made, ignoring the fattening properties of coconut milk. It tastes healthy, and makes me happy. Dad has frozen dinners delivered. Nutritious and what he is used to … roasts, cottage pies and etc. It’s just me doing the soup thing.

It’s okay, I’m getting there. I have accepted that it takes a long time to return ‘home’, after 15 years out in other worlds. I am both resisting, and accepting. I think it’s the only way. I flee Mosgiel whenever I can but accept I must live here while Dad needs me.

I hope to get back into my photographic life, as I carve out the space here in this new life. Perhaps I needed some down-time, while I work out what’s next.

Let’s see it.

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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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