jmgoyder

wings and things

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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Anthony picking olives a few years ago

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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Another person dies

A few moments ago I found out that a neighbor had died and I got the most terrible shock. His office was next to mine at the university a decade or so ago, but then he retired to run a farmstay. Not so long ago, I gave him my emus because he had bigger yards. He was known fondly as ‘Farmer John’. I have sent a private message to his wife, and will go to the funeral, of course, but am still reeling that he is actually gone.

He left the university to follow his dream of having a farmstay and, with incredible hard work, and his wife’s support and culinary expertise, he made a success of it. I salute him.

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Flowers, food and fun

Flowers:
It is so interesting that the avocado tree has unreachable fruit at its top, but is blossoming down below. The very last edible avocado is in the refrigerator, ready to take to Ants tomorrow (he loves them!)

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I’d been bringing various camellias, roses and even bottle brush into the nursing home but the other day I thought I may as well tear off a whole branch of avocado blossoms and arrange them in Ants’ room. This whole flower thing is kind of weird because I really don’t have a clue about this garden Anthony established all those decades ago and have only begun to take a bit of an interest now because, well, why not! Also, every time I bring Ants flowers he gets a thrill out of it. I found two stray roses yesterday and their scent was fantastic.

Food:
Ages ago, I began taking an interest in cooking more interestingly, partly in order to be able to provide Ants with cakey stuff (he has a sweet tooth), partly in order to provide Ming with sustenance (he has a fussy tooth) and, more recently, because I have become fascinated by, and dedicated to, preparing food from scratch. It’s really time-consuming to chop or grind the herbs, roots, chilis etc. but what a great feeling/taste, and how nostalgic it makes me for my early days on this farm when Gar (Anthony’s mother) would point me in the right direction of the flour tin with her walking stick; teach me how to make white sauce; show me (with Anthony’s help – probably our first vaguely romantic moment!) how to pluck a duck and prepare for roasting.

Okay so my latest food discovery is stone-age bread. I just typed this into google out of curiosity and was a bit surprised to find there were already so many recipes. I tried the first one and bingo – beautiful! I would have taken a photo of my own successful loaf of bread but I’ve already eaten it! I will refine the recipe and post soon (yeah, I can hear the non-sighs of anticipation ha!)

Fun:
Before Anthony became so ill with Parkinson’s disease etc., we had a relationship that was full of banter, teasing, laughter, fun. Some of the fun stuff was simply giving cheek so, today, when Ants tried to say something to me in his newishly quiet, croaky, soft voice, I took him by the shoulders (gently!) and said “SPEAK UP, ANTS, CLEAR YOUR THROAT, STOP BEING SO FEEBLE!” Then I punched him lightly in the shoulder and, yeeha! I was the recipient of one of his gradual, wonderful smiles – kind of like sunrise in the mist, bit by bit by bit.

[Note to other bloggers: I hope you know I am reading your posts but just no time atm to comment etc. x]

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Gutsy 9 – my fantastic bird-in-hand

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.

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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

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

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

G9!

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One-liners

Today, the nurse-in-charge told me that they were concerned early this morning because Anthony couldn’t formulate words and I said that I had noticed this too over the last week or so. Of course this loss of grip on language has been happening for some time and sometimes Anthony tries, fails and sighs in frustration and resignation. His incoherence now, however, is so impossible for me to interpret, that I have become very good at pretending to understand.

But then all of a sudden, he will come out with the most perfectly sarcastic one-liner that it cracks me up. This happened last week when the nursing home had the accreditation people in. Ants and I were interviewed by a lady who directed her questions at Anthony but, because he was a bit confused, I had to kind of interpret his answers, then double-check for his nod.

After the interview was over and Ants and I were alone again, he grimaced arrogantly, and said, clearly and coherently, “I think I was a little too enthusiastic, Jules”. Well, of course I cracked up laughing straight away but Ants just gave me an ironic look and punched his right fist into his left hand and began to smile his slow smile.

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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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Five seconds

Today, I experienced, for the first time, five seconds of what I always knew was inevitable. For five seconds (and I know it was exactly five seconds because I kissed Anthony five times – three on the nose and two on the forehead – all in quick succession, to remind him….)

Ants!
It’s me – Jules!
Ants!

A syllable for each peck of a second.

This is the first time Anthony hasn’t recognized me and, even though it was only five seconds, it is good to have had that little taste of forewarning/arming because I still have time to develop some tactics and hopefully some wisdom.

When I told my mother about the five seconds of unrecognition (yes, ‘unrecognition’ is a word – I checked) she squeezed my hand but I quickly reassured her that I was fine with this first of what will be many unrecognitions. (It’s kind of weird being comforted by your 79-year-old mother about your 78-year-old husband!)

In what I think will be the near future, the challenge for me will be in how to reassure Anthony that I am indeed Jules, his wife, without embarrassing him. I know this because lately he asks a lot for his mother and many others of his family who are now deceased. Sometimes I say they are all well but very busy but sometimes (for example if he is distressed, as he was for his mother again the other night), I will gently remind him that she is gone.

I was thrilled today to have a conversation with a friend of mine, Ann, who now works as a clinical instructor at the nursing home (she and I both left our jobs at the university at around the same time). Ann told me that she has been showing all staff, including domestic staff, a DVD about Parkinson’s disease that explains, among other things, why someone with PD can sometimes walk, and other times be totally unable in which case encouraging words are useless. Interestingly, the DVD also explains why a person with PD may not respond to a greeting, and therefore appear to be unfriendly. Ann told me that she pointed out to the staff that people with PD need time to process the greeting and should, instead of rushing past with a “Hi Anthony!” and disappearing, wait for his response.

After all, it only takes around five seconds for Anthony to say “hi” back.

On the other hand it only took one second for Anthony to say “Rubbish! Throw it out the window” about the cupcakes I made for him last week!

The kiss Yes, I know I’ve posted this photo before but I love it!

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Resilience

I used to miss the Anthony of the past terribly – the robust, energetic, boisterous, fun-loving Anthony with the loud laugh – and I still do of course. But lately, I’ve begun to realize that I also miss (and much more-so) the Anthony of now, the Anthony who still IS. In our mutual acceptance of the way things are now – his Parkinson’s disease, the nursing home, our forced “illness separation”, and even the increasing confusion and hallucinations that accompany his dementia, I now find myself anticipating my daily visits to the nursing home with what would, months ago, have seemed an impossible excitement.

The strange thing is that the feeling of obligation to visit Anthony for his sake, has been subsumed under a desire to visit him for my sake. The contentment of these long afternoons together, punctuated here and there by volunteer work, is something I never expected to happen. Okay, so boredom, apathy and fatigue are definitely risk factors here but I’m learning how to counteract the former two by coming up with new ideas whenever something begins to become tedious (like watching episodes of Neighbours!) The latter – fatigue – has been solved by this sudden flu which means I’ve been lolling on my bed for three days reading novels and resting, not allowed to go to the nursing home in case I’m contagious. So Ming and my mother have been visiting Anthony – wonderful creatures they are!

But I miss him so much! I have become so accustomed to these afternoons, this routine – the joy of his smile at the sight of freshly picked camellias (and me), playing the card game “Memory” with him and other residents, eating olives and blue cheese with him, or giving him a piece of my latest cake, helping him with his lunch and sometimes dinner too, watching television or a dvd, combing his hair with the metal comb he always loved that I only just found (and he is thrilled!) And so on. Tiny morsels of pleasure, once overlooked, now savored, now treasured. I have never looked at a camellia the way I do now – never! I have never noticed so acutely the beauty of a white peacock feather nestled in the arms of an avocado tree’s blossoms, a tree that is still providing us with plenty of fruit!

I don’t want to sound soppy and sentimental and goopy, but I do think Anthony and I have been extraordinarily fortunate to have found such a mighty love and I sometimes wonder whether this is why we are both now coping so well with what IS. Actually no, it’s not coping, accepting, persevering, or any other stolid adjective. Instead, a wonderfully weird happiness.

Resilience: Anthony has always had this and now it is as if he has gifted it to me.

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