jmgoyder

wings and things

My second home

Anthony

In my last post, I wrote a bit about how, instead of taking Anthony out for drives or bringing him home for the day, I have begun to make myself home in his room in the nursing home. For those who don’t know, Ants has advanced Parkinson’s disease with encroaching dementia, advanced prostate cancer and several other conditions. He is 78 and has been in the nursing home for nearly two and a half years. I have already blogged about the heartbreak of that mutual decision, and written about the ongoing ups and downs since then.

Several weeks ago, I realized that I had to stop getting Anthony up and out, and back home, and visiting friends and relatives, and going to restaurants etc. because I could no longer lift him in and out of the car, wheelchair etc. Well I could actually, but the physical strain and emotional stress of all of this maneuvering was taxing for both of us, and Ming too of course.

You see, all of the above jobs were infused with a panicky anxiety. Will the pills work today? What if I can’t get Ants to the toilet in time? Will he try to walk around the farm/restaurant and fall again? What if I have to get the ambulance out to the farm? Will he be too cold and insist that every heater is on? Will Ming cope? Will I cope? Will Anthony cope with going back to the nursing home after being out and about? Will there be more tears than we have already cried?

So, almost as an experiment I guess, I began to spend more time in the nursing home, something I couldn’t have done even a year ago – too boring, too sad, too scary, too confined, too uncertain – I hated it. But gradually, over many weeks now, this has become the norm and the fact that I am spending several hours a day with Ants in the nursing home means that he is no longer so desperate to come home and often, by late afternoon, he thinks he is home.

I keep long-lasting stuff, wine and snacks in one of Anthony’s cupboards, bring a favourite food every day (blue cheese, chocolate, olives etc.) and sometimes it’s a little bit like a party. If the heater isn’t on, I turn it on, put a blanket on Anthony’s legs and do up his jacket up (he is always cold). Then I turn the television on to whatever our program is for the day (Master Chef, Midsomer Murders, Neighours). During the commercial breaks, I mute the TV so we can talk but lately Ants is having a bit of trouble with speech so I have to help a bit. Yesterday he couldn’t get the sentence he wanted to say out so I told him I could read his mind and not to worry. And I can read his mind.

But then his words came out:

ANTS: You make me nervous, Jules.
ME: Why?
ANTS: I’ve fallen in love with you again.
ME: Hell, Ants, we’ve already done that!

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‘At home’

It is several weeks now since I began the routine of making myself at home in Anthony’s room at the nursing home. Sometimes I am there from noon to 5pm, but mostly from 2-5pm. The fact that I am always there at sundown has been a plus, and sometimes Ants thinks he is at home. My mother visits him at least once a week and told me that I had made a little ‘Bythorne’ there (that’s the name of our farm). I now write everything Anthony says to me in a notebook because I am fascinated at how someone with encroaching dementia can to-and-fro from past to present, from memory to imagination, from anxiety to exhilaration. But his grief when I leave to go home can be very upsetting because I have to explain that I am going back to Bythorne and he has to stay in the nursing home. Anthony doesn’t always understand this and thinks I am abandoning him so it is always a difficult ‘goodbye’ but I think I have figured out how to make it easier with a bit of banter – not sure yet.

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Smiling

This afternoon Anthony was, as is usual now, in his armchair in his room at the nursing home and a bit confused. I put the heater on, zipped up his jacket, put a rug from home on him and changed the TV station to “Neighbours”. Anthony’s hands were cold, so I took the heat bag my friend Jen made and microwaved it for 4 minutes in the kitchen (staff let me come and go from kitchen area now), took it back and put it on his lap, placed his hands on it and put the rug on top.

Anthony was really drowsy – has been all week – but at one point I was able to rouse him (by punching him gently in the shoulder). His eyes were blank until they met mine and I said, “Ants, I love you more than anyone in the world.” Suddenly my eyes filled up with tears.

There wasn’t much response so I tried again, more shoutingly, “Anthony, I just told you that I love you more than anyone in the world, and my eyes filled with tears, and you ignored me!”

Anthony looked into my wet eyes, and his drooping mouth (caused by Parkinson’s disease) curved upwards into a smile. I realize that doesn’t sound like much but to get a smile from this previously jovial person who is now so disabled, is a small miracle. The only thing that annoys me about this smiling scenario is that I have to work very hard to get a smile out of Anthony whereas Ming just has to walk into his room and shake his hand and – BINGO – Anthony smiles – grr!

I’m so grateful for the decades of smiling we did before smiling became an effort for Anthony – not because of sadness but because of how PD affects the muscles of the face. So nowadays I come into his room with a huge smile every single day.

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Not buying into Christmas

Such a relief! Today, Ming and I had planned to go into town, get presents for each other and Anthony, get a Christmas tree, a ham, wrapping paper, sticky tape (which I can never find), send a few last-minute cards, decorate the house, find the Christmas tree lights and ornaments (oh where did I put them?) and generally have a frantic, stressful, expensive, horrible day.

But on waking up this morning to a day that was already promising relentless heat, I changed my mind and a bit later I discussed my idea with Ming:

Me: I think we should postpone Christmas.
Ming: What?
Me: Well, you will be in hospital until Christmas Eve … actually maybe we should just skip Christmas this year.
Ming: What? No presents?
Me: No presents.
Ming: No tree?
Me: No tree.
Ming: No turkey?
Me: No turkey.
Ming: No Christmas crackers?
Me: No Christmas crackers.
Ming: Mum, this is such a relief!
Me: So you agree?
Ming: I think it’s a brilliant idea!
Me: Without all the usual fuss we can celebrate Christmas for what it is.
Ming: Do you mean go to church?
Me: Yes.
Ming: Okay, let’s shake on this.

So we shook hands and grinned at each other.

The sense of relief is huge! I don’t have to fight through the throngs at the shops, spend a small fortune on ‘stuff’, don’t have to worry about how the hell I am going to cook a turkey with no oven, don’t have to search the whole of Australia for cranberry sauce, don’t have to spend hours wrapping presents, don’t have to queue up at the post office – ahhhhh!

A bit later:

Ming: But what will we eat for lunch on Christmas day?
Me: Ham sandwiches? I mean Anthony hardly has any appetite anymore anyway, it’ll be too hot for me to eat and you’re a fussy brat.
Ming: I like ham sandwiches.
Me: Good, then that’s decided.
Ming: But Grandma’s still coming on Christmas day isn’t she?
Me: No.
Ming: WHAT?!
Me: I’m joking, you idiot!

Ahhhhhhhhhhhhhhh – now all I have to do today is frolic with the peacocks – yeeha!

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A peaceful place

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Mother goose

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After weeks of feeding Ola special grain and replenishing her water, and looking forward to her two goslings hatching, I went out this afternoon to find that she had abandoned the nest and there was only one egg there. So I brought the warm egg into the house and put it in my shirt pocket and googled goose hatching whilst stroking the egg and saying little mothery things to the gosling inside it. I found enough information to warrant going outside again and slightly cracking the egg so it could get out.

Well, guess what? There was no gosling; it was just an unfertilized and beautiful egg with a massive yoke – not a chick. And to think I was stroking this stupid egg for two hours when I could have used it to bake a cake! Argh!

Ola is frolicking without those eggs and I am feeling like a goose!

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My great niece

Several weeks ago a baby girl was born into our family – my nephew’s first child (with the help of his beautiful wife), my brother’s first grandchild, my mother’s first great grandchild, and my other brother’s and my own first great niece.

Seeing her today was wonderful! She has changed so much already – as babies do. Surrounded by the love of her parents, grandparents from both sides of the family, and great aunts like me, cousins and second cousins galore, this child already has the delighted expression in her navy blue eyes of being Number One!

My mother had a long conversation with her while I sat on the floor, ignored and jealous, until suddenly this fantastic baby turned her head to me, squeezed my finger in her tiny fist and told me a few home truths (I was unable to interpret but hopefully her parents will translate what she said to me later). She fixed her piercing eyes on me and uttered several baby sentences which I tried to answer to the best of my ability but eventually she threw my finger away with a look of ‘omg this auntie is thick!’

Neve – I love you, my first great niece, and your parents are pretty okay too (but you already know that!)

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My muse is a peachick

Gutsy 9 is one year old today (yes I got the date wrong in a previous post – I thought I found her on November 9!) For those who don’t know, G9 is the peachick I found scurrying around outside on 9 December 2012. I knew she wasn’t a duck or a goose but I thought she might be a chook, or a turkey, or even a guinnea fowl, and it took me awhile to realize she was a peachick. Since none of the peahens seemed to want her, I brought her into the house and raised her until she was big enough to go outside. As she grew, I discovered that she was pied (half white and half blue) and recently that she was a she after all (we had thought she was a he). She is a daily delight – she runs to me whenever she hears my voice and still does funny little twirlies, then follows me like a dog. Here are some photos of her a year ago – on my shoulder, Anthony’s lap and in Ming’s hands – and her birthday photo today. She has brought all of us a great deal of joy.

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Meg and Ming

Ming (my son) and Meg (my mother) are very good at charades, or whatever they were playing when this photo was taken. I have no recollection of this occasion, but my mother just sent me the photo which I have never seen before! In the good old days, when Anthony still lived here at home, my ma would often come to visit on Sundays. She and Ming would play games nonstop while Anthony and I watched, bemused, amused and sometimes hysterical with laughter. Meg and Ming + Ming and Meg = Inviolable.

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Meg is Ming’s only grandparent so they have a special relationship, as well as very bad taste in eye-glasses. Thanks for the guffaw, Ma!

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Not a one-way road

25 years ago, before Anthony and I were married, I would often travel the two hours from Perth to the farm to spend the weekend with him (he rarely took a day off). I would turn into Paradise Road – the short, narrow road leading to the farm – stop my car and quickly refresh my lipstick, powder my nose, spray the perfume he gave me onto my neck, fluff up my hair, then zoom the remaining half mile with my heart beating madly in anticipation.

I would arrive to a shout of “JULES!” the scent of a chicken roasting in the Aga, and a hug that would nearly crush me. There would be beer, maybe a visitor or two, willy wagtails flitting here and there, and the beautiful, comforting smell of cow dung in the outside air. There would be Anthony’s bellowing laughter, my latest anecdotes about university and the nursing home where I worked, a lesson in gravy making, a beautiful meal, a favourite comedy on television and lots more hugs.

We were in love.

Now, I head in the other direction up Paradise Road to go into town to pick Anthony up from the nursing home and bring him to the farm for the afternoon. Even though I retain a tiny shred of that anticipation of 25 years ago, it is tainted with a kind of exhausted dread because I know the afternoon will be difficult. There will be no bellowing laughter, very little conversation and there will be a lot of dangerous occurrences when Anthony tries to do things he can’t do anymore – like chopping wood, washing the car, mowing the lawns, fixing the gate. I will secretly (through the kitchen window) watch him try and give up, then I will watch him stand outside, swaying slightly whilst leaning on his walker, then I will ask him to come back inside. If I hover over him it makes him feel inadequate, so I don’t but as he has had so many falls, I get anxious. I watch him struggle for half an hour with things I could do in minutes (like opening a gate, washing the dishes), and I try to breathe slowly and patiently. If he begins to do something ludicrous (like wind a clock with a knife, drink from the sugar bowl, talk to people who aren’t there) I sometimes intervene and not always gently! And he has no idea how absolutely exhausting these days at home are, no idea of the guilty relief I feel when I can take him back to the nursing home, no idea of how much my heart breaks when he says, “But why can’t I just stay here with you?”

During the drive back it will be the same halting conversation:
Me: I can’t manage you at night now – you know that, Ants – you’re too heavy.
Anthony: But I’ve lost so much weight.
Me: I know but you are still too heavy and Ming isn’t supposed to lift either.
Anthony: I’m better than I was Jules.
Me: Yes, but you still have Parkinson’s disease.
Anthony: I miss you so much – please never leave me.
Me: Idiot! Of course I won’t leave you! Ever!
Anthony: That’s good then.

We are in love.

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