jmgoyder

wings and things

What a strange Christmas!

On Christmas Eve, I sliced the ham and put it into a sealed container in the refrigerator, ready for Ming to bring to my mother’s place in the evening, then I went to the nursing home. Ming was working at the restaurant and planned to come home, shower and change and head to my mother’s while I spent the afternoon with Anthony.

Just after I got to my mother’s at around 6pm, Ming rang and said he was sick and had been vomiting and didn’t think he could come.

“But what about the ham?” I shrilled unsympathetically.
“Mum, I am really sick!” Ming exclaimed weakly.
“Can you just bring it and then you can go to bed at Grandma’s,” I said.
He agreed begrudgingly.

Meanwhile, family members began arriving at my mother’s, champagne was poured and the presents under her Christmas tree were ogled. I kept an anxious eye out for Ming and finally he arrived. As he walked up the driveway, I wondered why he had left his car in the road and why he was wearing such a strange spotty outfit. Then I realised, oh no! that he was covered in vomit.

“I just threw up in my car!” he said weakly, but ferociously. So we got his car into the driveway, he went inside via the back door so he didn’t have to see anyone, and my mother gave him some clothes to change into and put him to bed. I took the container of ham inside then got a bucket of water and tried to clean the inside of Ming’s car but it was everywhere (I will spare you the details!)

Anyway, with Ming in a bedroom adjacent to the loo, the rest of us continued our festivities while I checked on Ming periodically, who was continuing to vomit every hour or so. I felt terrible to have made him come and had to suffer his weak remonstrances of “You care more about the ham than me.”

By the time I was ready to go home, at around 9.30pm, it had been decided that Ming would sleep the night at Grandma’s.

The next morning (Christmas day) at 6am, there was a knock on the front door that woke me up and, assuming it was a recovered Ming who had lost his key, I opened it blearily only to find it was my brother! He said, “I thought you might like some company – let’s have a drink.” So BJ and I drank champagne on the front veranda, waxing lyrical about this and that and watching the birds dive in and out of the trees, including the new wild parrots I’ve never seen before. It was a fantastic hour and it actually made my day! Then BJ had to head home for his family’s 8am Christmas present ritual.

After he left, my mother contacted me to say she would bring Ming home because he was too weak to drive and had continued vomiting until 4am. So they arrived and we opened a few presents but Ming was still feeling ghastly so I put him to bed and my mother headed in to town to my brother’s place after which she was to meet me at the nursing home.

Well, the crayfish, mango, and my mother’s pavlova, were all a great success with Anthony and so were all the presents I helped him unwrap, then we watched a bit of tenor music on TV, then my mother left, then I went to do my 3-6pm shift in the dementia wing.

After I knocked off, I went back to Ants’ room and we ate the leftover crayfish (which I’d put in the staff frig.) and I went home to my no-longer-sick-but-very-weak son who struggled through the opening of his remaining Christmas presents ha!

But yesterday my mother contacted me to say she had the same thing – the gastro. and it was absolutely horrific and I was helpless to help because of contagion. I rang the nursing home to tell them the situation but that I, myself, was not affected (there is a strict rule that you don’t come in if there is any likelihood of infection of any sort). So, despite the fact that I’m not sick, I’ve been banned from coming into the nursing home until next Thursday! This means I can’t do my allotted shifts and can’t see Ants.

Thankfully, my mother is over the worst but is obviously very weak. Today Ming and I are going to hers to pick up his vomit-ridden car but, now that he has recovered, he wants to take me out for lunch first.

What a strange Christmas!

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On making the angry doctor nearly smile

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!”

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Opposites

Today I spoke to a fairly new resident in Anthony’s nursing home, Meri. She is in a motorized wheelchair with stroke-like symptoms, but is totally lucid. On her first day, I could see a mixture of grief and determination in her expression when I just said hello. Today she told me that she is adapting but her husband keeps ringing her and telling her that he feels lonely and abandoned.

I couldn’t quite compute this until I realized that it must have been Meri’s decision to go into the nursing home in order to save her husband from the burden of care. I told her that for the first year of our own nursing home experience, Anthony and I had a continuous dialogue, sometimes painful, sometimes gentle, until we both accepted the situation.

Meri and I are going to be good friends, I hope. We have a lot in common in opposite ways.

[PS. all names are always altered for privacy]

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“Is that you?”

Today, when I arrived at the nursing home just before lunch, it was a bit like the five seconds of yesterday but this time Anthony said, “Is that you?” as if he couldn’t quite believe his eyes. I think we have now fallen into a new phase of Parkinson’s but then again Ants might just be having a bad week.

I am still surprised at how gleefully I go in every day and I’ve been trying to disentangle the complexities of why this is because it’s only a relatively recent phenomenon and I’m not quite sure what flicked the switch from the dutiful dread of a few months ago to the anticipation of now. The sense of purpose, routine, satisfaction and joy I feel now is wonderful but also a bit disconcerting!

The volunteering situation has been absolute magic. Today, Nat, Edna, Beatrice, Ants and I sat around the dining room tables after lunch was over and played Nat’s version of ‘Memory’. Edna is just in for respite – her first time – and she told us yesterday (during a similar game) that she had been extremely nervous but since meeting Nat, relaxed a bit and now they are like old friends!

So we played and here are some smatters of conversation during that hour and a half of laughter.

Nat: Tonyyyyyyy (speaking to Ants) Come on, darling, turn your cards over.
Edna: Don’t let her boss you around, Tony.
LAUGHTER
Me: Ants, turn two cards over and hope for a match.
Ants: Jules?
Me: Pick up two cards – here I’ll help you.
Nat: My turn.
Me: No it’s not, it’s my turn!
LAUGHTER
Nat: Cheeky bugger.
Me: I heard that, Nat!
LAUGHTER
Edna: Is she cheating again?
Me: Well, even though she is a really beautiful person, I did see her put a card on her lap.
Nat: I never did!
Me: (sneaking around the table to snatch the card) AHA!
HYSTERICAL LAUGHTER FROM NAT AND EDNA AND ME – ANTHONY BEMUSED
Nat: Tonyyyyyy, help me!

I can’t count how many times I’ve played Nat’s version of ‘Memory’ now, but it has become quite popular with other residents too. The best thing about it is Nat’s contagious laugh and her mischief; the best/worst part is Nat wanting Ants to join in, and the worst part is Ants unable to engage very well. Plus, Nat and Edna are nearly blind so this makes for a very sloooooow game and Nat alternates from saying “This is the most fun I’ve ever had in meee life!” to “This is the longest game I’ve ever played!”

Today, we were all exhausted, especially Anthony who often chooses not to join in or else is so peacefully asleep in his armchair that I don’t rouse him. I just leave my stuff (scarf, handbag, book) next to him so that when he wakes up he’ll know I’m still around and not gone.

I help Ants with his tea now because this is a busy time for the staff and why not? He is pretty exhausted and PDish by then so I say my ‘seeyalater’ and am usually home by 6pm.

Tonight, as I left, I kissed Anthony on the forehead and he tried to speak but even the single syllable he uttered was impossible to interpret. He could no more say “I love you” than “Is that you?”

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Early to bed, early to rise!

Obviously it is much easier to get up early in the spring than it is in the winter so today I was able to get a lot more jobs done (just the usual domestic duties of washing and folding and tidying and cleaning that overwhelmed me a bit a couple of months ago) before going into the nursing home.

Today I arrived at 11am and found Anthony sitting outside in the sun. I managed to get him into a wheelchair and we went for a walk down to the beach. I tried this the other day but it was too windy and he feels the cold terribly, so we turned back prematurely. Today we went a bit further so, halfway back (which is uphill), I had to stop and take a rest.

Ants: Do you want me to take over?
Me: And how, exactly, will that work?
Ants: I can help you push me.

Yeah, right – grrr!

Sometimes Anthony sort of disembodies himself and will kiss his own hand, thinking it’s mine, or else turn to the left to speak to me, when I am sitting on the right. His room has a view of a lovely lawn and garden and he will often point out, proudly, that Ming is doing a great job with the calves.

I find it fascinating, and admirable of course, that Anthony keeps wanting to climb out of his illness, and incapacity, in order to help. Once we’d returned to his room from our walk today – him shivering with cold and me drenched in perspiration – one of the nurses came in to give Anthony a pill and had a bit of a rant about the staff she was working with.

Nurse: They’re so useless!
Anthony: We can help you (trying to get up).

Now that I am a volunteer, I have a bit more insight into ‘how it is’ for both residents and staff. Anthony is in the ‘high care’ section for people with mobility problems. In the ‘dementia’ section, where I help out with various activities on the weekends, most of the ten female residents are extremely mobile (we go for walks around the grounds!) but terribly confused. I have taken a liking to all of the women but especially Beatrice who is, at nearly 90, physically fit, beautifully groomed and who carries her handbag with her always. Before I volunteered, I would exchange greetings with these women and the carers and Beatrice seemed the happiest. But now that I know her better, I realize that her bright smile is due to the fact that soon her husband will be picking her up and she is always ready and, unfortunately, always extremely anxious. Her husband must have died years ago.

I am, of course, drawn, emotionally, to this nursing home where Anthony is, but I have also become involved in other residents’ lives, so much so that we have become friends. Even with dementia, where you have to introduce yourself over and over again, the friendship-feeling is solid and ongoing.

I’m extremely grateful to be able to do this volunteering at Anthony’s nursing home because it allows me to come and go from his room as if I were just going to hang out the washing, or cook tea, or make coffee – again, a simulation of sorts.

It is now six weeks since I began volunteering and a further six weeks (I think – will have to check) since bring Ants home. If, indeed, it has been this long since I brought Anthony home, then hopefully he will no longer pine for home and beg to come home – a situation that forces me to become stern and admit to him that I can no longer lift/manage him at home. His response is usually dignified but occasionally he accuses me of being unfair.

For the last couple of days I have been feeling a bit exhausted (not because of Anthony!) and I hate this feeling so maybe getting up earlier is the answer to that – yes! I have to tomorrow anyway so I can meet Dr Nathalie Collins (see previous post) for breakfast!

All of those years that Anthony got up before 5am to milk the cows, like so many dairy farmers still do – my hat is off to them – heroes in so many ways!

As for me, 6am is okay – zzzzzzzzzzzzzzz!

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Our white-haired boy’s new role

As many of you know, Ming had his second spinal surgery just before Christmas last year at which time he was advised by the surgeon not to resume his job as a dairy hand for our neighbours, or to do any manual job, ever. That was a hard pill to swallow but he swallowed it and, since recovering from the surgery, he has spent the last few months throwing himself into acting auditions (most of which have required him to travel the 200 kms to Perth by train or bus, and vice versa).

He scored many bit-parts: a music video, a ‘student’ in a university advertisement, a couple of paid roles; he has also created a portfolio and is now listed on a website for aspiring actors. In fact, Ming has done so much acting-related stuff in the last few months that I have had trouble keeping up. With no vehicle, and no driving licence, he learned how to use public transport, stay in youth hostels, but he also relied on friends and family for accommodation and transport. It has all been enormous fun and a huge learning curve in so many ways and Ming has become a better net-worker than I have ever been and Anthony’s gregariousness shines out of him.

None of this, however, has proved to be lucrative yet, so Ming started to apply for jobs at restaurants and yesterday he was told that the restaurant, where he has only done a few casual shifts, want him full-time now. I am so elated for him and proud! But he and I are also grateful for the fact that a relative of a friend of one of the owners of this restaurant put in a good word for him. (I haven’t included names here, in order protect the innocent, just in case Ming drops a tray or something haha!)

Today, Ming was working there, so a friend and I went for lunch and it was so weird to watch him in action. The place was very busy and apparently, once he goes full-time, he will be jack-of-all-trades. It was great to watch the way he interacted with customers – he is a natural!

Tonight, he’s gone up to Perth (for the last time for awhile, due to getting full-time work) to play the part of a character in his friend’s university film assignment. He auditioned and got the part last week and here is the irony: he was picked as the character of a son who struggles with his father’s dementia, despite nobody in the film crew knowing his background. I am still a bit gobsmacked.

Anyway, of course I am rejoicing at all of this good news for the white-haired boy (despite no longer being a natural blonde); he will no longer go slightly insane in the nursing home and resort to playing on Anthony’s walker!
photo (3)
photo (1)

So happy and proud of Ming!

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“Just around the corner….”

Lately, Anthony has been asking me more and more frequently where his mother is, and sometimes he asks me to ring her. Mostly I evade the question or just say that she is busy cooking, but the other day I ventured, “She’s gone, remember?” This truth made him sad and quiet for some time and then he was a bit embarrassed for having forgotten.

One of the best things about this nursing home is its meals. Lunch is often a roast served up in much the same way as many of the elderly residents remember their mother’s offerings. The photo below shows Anthony’s meal the other day before he demolished it – roast beef, potatoes and pumpkin, with cauliflower gratin, peas and gravy.

photo (4)

Last week, my mother, brother, niece, Ming and I attended the funeral of one of our oldest and most special friends, V, a woman who first taught me to drink from a straw when I was little, and for whom Anthony had a lovely affinity. My funniest memory is of V staying here on the farm one night and 4-year-old Ming (who used to sleepwalk) clambering into bed with her in the early hours and cuddling her nose into the wall. I remember getting up and not being able to find him until I discovered him fast asleep with his little body curved around V who looked a little alarmed! To V’s sons, siblings and family, your mother was a legend.

Yesterday, I attended the annual memorial service at Anthony’s nursing home. I dumped my bag in Anthony’s room, gave him a quick kiss and explained that I was going into the next section to pay my respects and volunteer as helper in the serving of tea and coffee, cleaning up etc. He wanted to come with me until I told him it would be like a church service! Once I was seated and reading through the list of people who had died, I was shocked to find that there were 18 because I only knew of two, J and A. J was in the room next door to Anthony’s for over a year, and A was a beautiful, tiny woman who used to get great pleasure from holding the dolls that look like real babies. The fact that 16 other people had died in different sections of the nursing home during the past year jolted me and, looking around the room, I spotted J’s wife and her tear-filled eyes blinked at mine, anticipating the hug that we would share later.

After the service (in volunteer mode), I helped Ev (my volunteer ‘boss’), to rearrange the room into a cafe whilst, out on the lawn, the people who had lost someone released balloons filled with wattle seeds and helium. On the small crowd’s return, on walkers, in wheelchairs, on foot, I served tea and coffee, made friends with a few residents and volunteers I’d never met before, gave hugs where it seemed acceptable, and pinpointed T, J’s widow, to give her my sympathy. After all, she and I had been visiting our husbands at around the same time every day for a year. But her red-rimmed eyes eventually dismissed me and I moved away to help Ev with the clearing up of cups and saucers, tables and chairs. Once all of that was done, Ev thanked me and said I could go back to Anthony, so I did.

But, just seconds later, I was told by the nurse-in-charge that M, a 91-year-old man two rooms down from Anthony’s, had died in the night. Two days previous, I had hugged R, M’s wife, when she told me that M had pneumonia and I had just begun to, shyly, befriend the many members of this family and learn all of their names. Now that M is gone, I may never see R and the family again and yesterday afternoon, when they all came to clear out M’s room, I was very careful to keep a distance, to just speak to one of M’s daughters before withdrawing into Anthony’s room, closing the door and crying in his bathroom.

A bit later, Anthony hugged my grief away enough for me to be normal, even jovial, but the experience of losing this many people I cared about in such a relatively short space of time is difficult.

I remember so well the day that Anthony’s mother, ‘Gar’, died because I was with her, in the hospital, 33 years ago. She and my father died within less than a year of each other and, at the time, my teenage heart didn’t cope very well with losing two such enormously important mentors and the grief was unbearable.

But now, with the benefit of an additional 30ish years of hindsight, insight and love, I think that next time Anthony asks where his mother is I will say, “Just around the corner, Ants.”

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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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A new phase

I think Anthony has entered a new phase of Parkinson’s Disease just in the last week or so. Taking him for drives, or home for the morning or afternoon, or out to lunch, or to visit friends/family has all-of-a-sudden, it seems, become something we don’t do any more.

This new phase is partly due to a deterioration in Anthony’s physical mobility, and his current sleepiness. The transition from Anthony and Julie gallivanting off for the day to Anthony and Julie sitting in his room at the nursing home, watching re-runs of Master Chef, has been strangely enjoyable for me.

Today I had to take Ming to town to get the bus to Perth at 8.45am so I thought I may as well go straight to the nursing home and spend the day there. After seeing Ming off, I found myself in an I-can’t-wait-to-see-Anthony-mood (a mood that is capturing me more and more).

So, for the first time ever, I spent the entire day at the nursing home (from 9am – 4pm). Partly, I did this as an experiment to see if I could cope. But my other reason was to see if Anthony would like me being with him in the nursing home rather than going out; he did! I will now plan all of my writing etc. to be done in the nursing home.

I’m not blogging as consistently as before – hope to catch up soon with blog friends.

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Anzac Day

Today is Anzac Day (fyi http://www.awm.gov.au/commemoration/anzac/anzac-tradition/) so I went into town this morning to join Anthony for the nursing home’s memorial ceremony. Many of his forbears fought in various wars and he has always become very emotional, as his mother used to, on this day of remembrance, so I wanted to make sure he was okay.

I was surprised to find that he wasn’t particularly interested. The ceremony was an abbreviation of those held elsewhere, probably due to having to fit it in between breakfast and lunch routines, and the usual under-staffing on a public holiday. I sat next to Ants with my hand on his arm during the service but now that he is so bowed over (partly due to Parkinson’s disease and partly due to his spinal condition) he no longer looks up so I had to kind of hold his head up when the flag was raised.

By 11am we were back in Anthony’s room and he was very wobbly (‘wobbly’ is the term we coined some years ago to describe what happens when PD is in full force; his eyes become glazed, he begins to dribble, and he can’t move, talk, focus without prompting). A nurse came in at 11.10am to give him his 11am pill but none of his meds seem to work like they used to so I had to feed him his lunch using a spoon. Like all of the residents in the high care wing of the nursing home, he has to wear a bib. We bantered a bit (well I did) about me having to feed him like a baby and that garnered a small smile from him.

By 1pm, I wanted to go home to my chores and said so. Anthony briefly rallied asking why he couldn’t come too and (for the zillionth time) I explained that, as it was already the afternoon, he would just get more wobbly and too heavy for me blah blah, and he gave me the usual stony look. I then reassured him that I would bring him home tomorrow morning because my youngest brother is visiting with his youngest son.

Tonight I rang Ants at about 6pm and he answered it (yay!) but I had to shout because he has forgotten that he has to hold the receiver to his ear, despite how many times I have showed him how. I could hear his voice saying ‘hello’ but as if from a great distance, so I yelled, “PUT THE PHONE NEXT TO YOUR EAR!” He finally did so and this was our conversation:

Me: It’s ME, Julie, your wife!
Anthony: I don’t know where Julie is.
Me: I’m Julie – it’s me, Ants!
Anthony: Oh, Jules ….
Me: I’m just ringing to say good night.
Anthony: Tonight?
Me: I’m ringing to say good night, Ants.
Anthony: Oh that’s very sweet of you.
Me: So I’ll see you tomorrow morning, okay?
Anthony: Where are you?
Me: I’m home.
Anthony: Is Mum with you? (He meant his own mother who died decades ago).
Me: No, but Ming is. So I’m saying good night and I love you.
Anthony: I … you … bye….

Next year will be the 100th anniversary of ANZAC day and I wonder if Anthony will still be here. If he is, I know for sure that he will not remember what the day commemorates because once dementia kicks in, it kicks hard and that is what is already happening.

The photo below was taken by Jane, one of Anthony’s nieces, at his 75th birthday party here, over three years ago. He doesn’t look like this anymore.

Anthony listening to speech

LEST WE FORGET.

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