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Christmas Eve’s eve

by jmgoyder

Well, it’s the day before Christmas Eve and I am finally ready to be festive. My rather blah mood was transformed into enthusiasm after having breakfast with my mother the other day because we went shopping together and I found some things that I hope Ming will love even though he ruled that it should be a strict 3-gifts-per-person Christmas. Unfortunately I take great pleasure in breaking Ming’s rules so there are now 20 presents under the new little Christmas tree he bought. I thought that was a good number since he is still (until January) 20 years old.

Oh how I miss the pillowcase years (a habit inherited from my parents in which an empty pillowcase was placed at the end of each of our beds and on Christmas morning would be filled, rather miraculously, with presents). Up until just a few years ago, I would send Ants and Ming to bed and would spend the late hours of Christmas Eve wrapping presents and putting them into an identical pillowcase (just in case Ming woke up). Then I would go to bed but wake up at around 4am to swap the empty pillowcase with the full-of-presents pillowcase. Alas, those exciting, magical days are long gone. Last year we didn’t even ‘do’ Christmas because we were too sad about this and that and, until a few days ago, I felt the echo of that sadness and an inability to be bothered.

Then, all of a sudden, a wave of hyperactive nostalgia hit me and I was filled with the energy of what Christmas really means – the birth of something/someone miraculously new – a Jesus moment, the memory of when Ming was born, a newfound excitement about seeing Anthony every today, so ….

…. I decorated Anthony’s nursing home room and sticky-taped old and new Christmas cards on his mirrors and pictures, draped the clock with tinsel, decorated the rose tree I bought him the other week, that looks real, with baubles and wrapped Ming’s presents in his room. You see, we are having Christmas in the nursing home this year; it will be the first year that he hasn’t been home for Christmas and it wasn’t until yesterday that Anthony realised this.

Ants: I’m a bit taken aback.
Me: Why? What’s wrong?
Ants: I thought it would be at Bythorne (the name of our farm).
Me: Are you kidding? It’s too hot and the flies are terrible out there! Anyway I like it here better! Don’t argue!
Ants (smiling at my sternness): Okay, you win.

Today I will wrap Anthony’s presents in his room while I face him towards the window so he won’t see; then I’ll sticky tape more cards around his room, then we’ll have a small glass of champagne together with a bit of mango (a great combination I discovered the other day).

Tomorrow night, various members of the family who can make it, will meet at my mother’s place for the traditional Christmas dinner of turkey, ham, Harvard beets (my mother’s specialty) etc. but I won’t tell Ants about this because it would be impossible for him to join us now that he is so incapacitated physically.

Then, on Christmas morning, Ming and I will open our presents to each other, saving a few to take into the nursing home at around 10am where my mother will join us at noon for my crayfish cocktail and some champagne. At 3pm I will head off to the dementia wing for my afternoon shift, Ming and my mother will go home, and at 6pm I will go back to Ants’ room to say goodnight.

A ‘Jesus moment’ – over and over and over again.
Amen.

Family Friendship Happiness Humour joy LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia Teenagers Western Australia

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“Can I get you anything from the shop, Ants?”

by jmgoyder

This has pretty much become my exit strategy lately when leaving Ants and coming home from the nursing home. I say I am just going up to the shop to get some eggs (just as if we are home), then I ask if he wants anything, like chocolate or cake or cheese or bananas and sometimes he says yes to one or more of these items. “Don’t be too long,” he sometimes says and I promise that I will be as quick as I can. If I have been at the nursing home since 11am or earlier, I leave at around 3.30-4pmish; if I have only arrived to help him with his lunch, I will often stay until 5.30pm so I can help him with his dinner (his ability to feed himself fluxuates a lot) Occasionally, like yesterday, I take the day off and Ming visits for me, or my indispensable mother does.

My exit strategy is a ruse of course, a way of leaving Anthony that deceives him into thinking that I am coming back soon but, after weeks of using this, at first tentatively, but now confidently, I am convinced that this is much better than saying, “I’m going home now, Ants – I’ll see you tomorrow.” If I say that, I have to explain at length that he is in a nursing home and this is the kind of conversation that happens, when he is able to talk:

ANTHONY: Why can’t I come too?
ME: Because of your Parkinson’s disease, remember?
ANTHONY: But I’m getting better!
ME: I know, but you are still too heavy for me to bring home.
ANTHONY: Well can you tell those kids [the staff] to keep an eye out for me?
ME: Of course!

Sometimes this kind of conversation goes on and on and on and might be prolonged by Anthony’s hallucinations that there are dogs, cattle or even snakes in his room, all of which I have to dispel before I can leave; sometimes he is unable to speak at all and will simply grab my hand and snuggle it up to his face; sometimes he will be asleep when I leave so I tell the staff.

This afternoon, this was our conversation:

ME: I’m just going down to the shop, Ants. Do you want anything?
ANTHONY: Love – a lot of it.
ME: I’ll give you a bit now [hug] but I’ll get 100 kilos of it and bring it back soon, okay?
ANTHONY: Okay.

And he smiled his beautiful new slow smile and let me go….

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Catching up

by jmgoyder

After weeks of fighting a tenacious flu that kept coming back after each course of antibiotics, I finally got a chest x-ray which was clear (phew!) but my dr seems to think it was probably a case of pneumonia treated with the wrong antibiotics (I saw another dr to begin with because mine wasn’t on duty). So now I am on a fifth course of two different antibiotics and already feeling a lot better instead of a little bit better. It is such a relief because, despite being well enough for my mama’s 80th b’day and well enough to visit Ants most days and to do some volunteer work, it is only now that I am beginning to feel normal well ha!

As my role as ‘care-giver’ has become most of my identity now, I have a bit of a terror problem when I get sick because I am so needed by Anthony so to have been given the gift of a clear chest x-ray is like gold!

I’ve been trying to catch up and re-connect with blogger friends but have now decided to simply read blogs in a from-now-on mode rather than go back to see what I might’ve missed. It’s been a bit of a relief, too, to let go of the self-imposed feeling of obligation to blog every day if I just don’t have the time or inclination. Perhaps someone should write a book about blog psychology because I get the impression that other bloggers often suffer the same kind of ridiculous guilt. Interesting.

My volunteering at the nursing home, though interrupted by this flu, because you are not supposed to go in there if you are sick (paradoxically, this is probably where I first got infected), continues to delight me and I have now sent an ‘expression of interest’ email in response to last week’s advertisement for a “lifestyle assistant” in the dementia wing. This is a permanent part-time position from 3-6pm for someone to provide activities while the nursing staff conduct the evening showers. As I have already been volunteering in this wing from 3-4pm on the weekends, I am familiar with each of the ten residents and have developed a bit of a rapport. Tomorrow I will fill out the application form and hope for the best. I think this kind of arrangement would be a perfect match and hopefully there will be no perceived conflict of interest as Anthony is not in the dementia wing. I am quite excited about this job possibility and the money would be a relief!

Ming has a job he loves at a restaurant called ‘Corners on King’ so he is gradually becoming independent financially and in other ways. He hates for me to make him any food so my tactic has been to make him a smoothie every morning into which I pack a punch of secret ingredients (if you want to know the secret ingredients you will have to email me!) For those who don’t know, Ming has, from birth, had a rather extraordinary unhungryness – long story which I can’t be bothered telling now but my best illustration of this is the 40C degree day, when he was about one, in which Ants and I had to use a syringe to push a bit of milk into his ungreedy little mouth.

The last few years have been enormously challenging with me having to resign from my job as university lecturer; Anthony’s permanent admission to the nursing home; my mother’s horrifying injuries after falling from her bicycle; the car accident and court case and cousins’ heroic recoveries; Ming’s two scoliosis operations; some friendships rekindled and others on hold; peace, joy, guilt and wretchedness in equal amounts; Ming’s short-lived, but loved, dairy worker job abandoned due to his spine; finding out that you really love eggs on toast; and that if you don’t like what you look like, you need to stop looking at yourself and look away…..

…. and finding out that the width of hope is immeasurable!

Catchya later….

Animal Australia Birds blogging Embarrassing moments Family Friendship Grief Happiness Humour joy LOVE STORY Marriage My published writing Parkinson's disease Parkinson's disease dementia Teenagers Western Australia Wings

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Simplicity

by jmgoyder

One of the things that I most appreciate about life, now that I am spending most of my daytime hours in the nursing home, is simplicity. Today – in volunteer mode – I helped out with a luncheon for about 60 residents and I loved every single minute of the three hours of ‘waitressing’. Anthony wasn’t mobile enough to join the throng which actually made it easier for me to focus on who wanted tea and who wanted coffee, serving the abundance of food, filling water jugs, asking if such-and-such could have another wine or beer, cleaning up when it was over etc. If Anthony had been there I would have been distracted, so it worked out well. Hilariously, two of the residents asked, “Where’s your father?” I don’t correct this any more because it just embarrasses people; I just said, “He is being a sleepyhead today” which always elicits laughter. Plus I was able to dash up the hallway to his room to check on him from time to time and he was fine and kept telling me I should brush my hair!

There is something beautiful about the attitudes expressed by many elderly and infirm. Every single tea, coffee, sausage roll, prawn, mini-quiche and, eventually, banana splits, was accepted with the kind of gratitude and graciousness that seems to accompany the dignity of age. My left hand was patted a lot and I found myself putting my right hand on people’s shoulders, asking people’s names if I didn’t already know, and smiling back at all of the smiles I was getting.

The simplicity of this event, its easy goodwill, and the incredible courage of so many people battling the various demons of age and disease but still able to smile, and to eat, drink and be merry, made me realize how, as a younger-than-old person, I could re-see every single day as a gift instead of worrying about all of the yesterdays.

So today I choose to say goodbye to everything that has turned a rotten yesterday into a rotten tomorrow. It is an enormous relief to discover the simplicity of today! And to look forward to the long legs of tomorrow!

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“Swallow it!”

by jmgoyder

The swallowing reflex is something that many people with Parkinson’s disease eventually lose and recently it has become more and more difficult for Anthony to swallow food, drink and especially the many pills he has to take. This morning, after a lovely visit from members of the family who had to travel home today, he said his feet hurt, so I asked for panadol and the nurse brought the pills in just before lunch was delivered.

He was given the panadol inside a spoonful of custard and I told the nurse that I would make sure he swallowed them but 15 minutes later, while his lunch got cold, he kept trying to spit them out and, no matter how hard I tried, with little sips of water and gentle persuasion, he just wouldn’t/couldn’t swallow the pills.

I got so angry with him! Furious, and in tears of frustration, I kept saying, “Just swallow, Ants, SWALLOW!” But he just kept sort of munching on the pills and trying to get them out of his mouth. I kept pushing them back into his mouth and giving him sips of water and he kept resisting me and kind of trying to push me away. Afraid that he might choke, I fought back and yelled at him “Swallow it, for God’s sake!” and finally he did after which I fed him his lunch which he swallowed easily – ironic.

It is a long long time since I have expressed anger towards Anthony so I felt disgusted with myself for having done so when I know he can’t help this sort of thing.

Later, once I’d calmed down and he’d said “Sorry Jules,” I asked him why he wouldn’t swallow the pills and he just said, “I thought they might be poison.”

“Why the hell would I poison you? Don’t you trust me?” Yes, my voice was a little shrill.

So I guess we are now entering yet another phase: inability to swallow, paranoia, extreme confusion. I reported the incident to staff so they are aware, and the doctor is going to review Anthony’s meds in order to find something easier to swallow.

For the remainder of the day, after Anthony and I got over our tiff, he slept in his armchair and I held his hand. Every now and then he would drowsily reach out to hold my other hand and whisper, “Sorry, Jules” again.

This previously robust, macho, laughing man of mine – my hero – now reduced, diminished by this rotten disease, and yet still more concerned about me than himself.

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On making the angry doctor nearly smile

by jmgoyder

Doctors do not like to be called into nursing homes on weekends so it was with some trepidation that the nurse-in-charge called the doctor-on-call last Sunday. It was the second day that Anthony had been in bed having suffered two falls. His blood pressure was very low, he was moaning with pain from constipation (a constant problem with Parkinson’s disease) and was extremely incoherent. I was very sad because it gave me a glimpse of what he would look like on his deathbed and I couldn’t seem to get rid of that thought.

After ringing the doctor, the nurse came in and told me he was coming but not happily and had hung up on her, so I was prepared for a bit of unpleasantness and was not disappointed! He strode in with the nurse, on his face a grimace of impatience, and shot questions at us none of which we could answer with any accuracy, which made him even angrier.

“Can he talk?” he snapped at me.
“Yes, well, usually, but not for the last couple of days,” I said. “You could try I guess ….”
“Mr Goyder?” he barked at Anthony.
“Ants, the doctor is asking you a question,” I coaxed.
Anthony looked at the doctor.
“How do you feel?” asked the doctor.
Without the slightest hesitation, Anthony said, “Most of the time, I feel very good, thank you.”
The nurse and I shared a jawdrop, then I cracked up laughing so hard that the doctor’s expression softened.
“You will feel you are here under false pretenses!” I gasped.

A few minutes later, after ordering blood tests and sending a report to our usual doctor (who is never angry!) the angry doctor spoke kindly to me, apologized to the nurse and left, after which she and I shared another laugh.

Anthony then lapsed back into incoherence except to say, “What a lovely man!”

Embarrassing moments Family Friendship Happiness Humour LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia

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Colouring in!

by jmgoyder

It was my blog friend, Trisha, who introduced me to the idea of Zentangle drawing. I am hopelessly trying to find her exact post but in the meantime here is the link to her blog:

http://trishapearson.wordpress.com/

Anyway, I got a bit into it because (a) I’m not a bit keen on artsy/crafty stuff so I thought it might be good for me; and (b) I needed something to do with Ants in the nursing home, other than watching television.

So, a few weeks ago, I started to do this drawing thing and LOVED IT! Anthony was a bit patronizing though – “Yes, I used to do this when I was 5” (he is so good at sarcasm!), but I ignored his characteristic bumpetyness and drew another circle.

The colouring in is a bit of a buzz, especially now that I have gone to a proper art shop and bought good quality colored pens. I have now done two pictures for Ants which, if you put them on the far wall, and squint your eyes a bit, look a tiny bit like art.

Obviously this colouring in tendency has leaked into my mother’s 80th birthday book so I hope she won’t be too appalled!

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Un-blogged….

by jmgoyder

There are several reasons that I have become somewhat disconnected from the blogosphere lately:

1. I have made Anthony’s nursing home room a simulation of our home;
2. I’ve become addicted to the Danish series, The Killing;
3. I’m preoccupied with crafting a present for my mother’s soon-to-be 80th birthday;
4. I have given up on trying to tempt Ming with my ox-tail stew;
5. My volunteering in the dementia ward on the weekends is a gift to me because, years ago, when I worked as a nurse in various nursing homes, there was never any time to actually chat with patients; now it is actually something that is scheduled!

So, I have decided to go for a job at the nursing home in the hope that my so-far volunteering reputation will help.

blogging Embarrassing moments Family Friendship Grief Happiness Humour My published writing Parkinson's disease Parkinson's disease dementia

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Anthony picking olives a few years ago

by jmgoyder

I have had a much more social week than usual with the arrival of my niece’s in-laws from Scotland: activities have included a beach barbecue, a day-long winery tour, a visit to our farm, my great-niece’s first birthday, and then a 21st last night. All delightful! Obviously, this altered the routine with Ants and the volunteering, but not hugely and I didn’t visit him at all on the winery day, hoping he wouldn’t notice.

This week is similarly social, with my best friend, Tony (the priest who married us), coming down for the night and a professor I worked with a couple of years ago, dropping in with his wife on his way back to Perth the next morning. This will slightly alter the routine with Ants once again but since it all worked out okay last week, I figure it should be okay this week too.

I think I blogged about the new routine awhile ago; it’s pretty simple really and was probably staring me in the face for several exhausting months, but I have always had rather slow reflexes – ha! The epiphany arrived at the doorstep of my heart one foggy morning and said two words: “Switch homes”.

It took me ages to understand what Epiph meant but then, bingo, the penny dropped. Instead of bringing Anthony home, either by wheelchair taxi, me, or Ming (visits that became increasingly gruelling, physically, mentally and emotionally, for all three of us), it was gently suggested that I simply make myself at home in the nursing home. Epiph is good like that; she recognizes my lack of pragmatism.

Since then, our marriage, Anthony’s illness, Ming growing up, and all the other bits and pieces of emotion and stuff….

have uncurled raised/dropped fists
have unfurled the residue of grief into a great wide flag of hope

The social stuff is good too because it provides me with conversation material for Ants. He loves it! I feel like I am learning something really important about dementia, or maybe love, not sure yet. A year ago I was struggling with how to cope with the impending boredom of the nursing home. Now, this is my attitude:

“Boredom is the feeling that everything is a waste of time; serenity, that nothing is.”
Thomas Szasz

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Gutsy 9 – my fantastic bird-in-hand

by jmgoyder

For those who don’t know, G9 is a peachick who, for some reason (maybe because she was half blue/half white) was abandoned by whoever hatched her. I caught her as she was scuttling, terrified, into the old dairy and pretty much raised her with the hands of Ants and Ming.

Today, I decided that I would come home earlier than usual from the nursing home. I told Ants I had to go and feed the birds and dogs, and then said I would see him later.

Ants: You won’t come back.
Me: What do you mean? I always come back!
Ants: Not, yes, what car?
Me: Our car, silly!
Ants: How many calves? I need those people for the fireplace
Me: Only ten left to feed. Ming will do it. I know who you mean for the fireplace.
Ants: Are you sure?
Me: Yes, should we ring tomorrow?
Ants: You do it – something is wrong with me.

When I got home, I went straight out to find Gutsy and, as usual, she was waiting for me:

I’d like a word, Julie

You’re always out and about and I feel ….

Oh I think I’m going to cry – how embarrassing!

G9!

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jmgoyder

wings and things

Christmas Eve’s eve

“Can I get you anything from the shop, Ants?”

Catching up

Simplicity

“Swallow it!”

On making the angry doctor nearly smile

Colouring in!

Un-blogged….

Anthony picking olives a few years ago

Gutsy 9 – my fantastic bird-in-hand

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