jmgoyder

wings and things

Your death day, August 23rd: Imagined conversation 67

Anthony: Hi, Jules.

Me: Hi, Ants.

Anthony: Happy anniversary.

Me: Not funny.

Anthony: So how did my first deathday go?

Me: Unexpectedly undramatic actually. I mean the sky didn’t fall in and it was a sunny day. Ming and I went to your grave and placed camellia branches just in front of the cross with your name on it that the funeral people provided. Then I used a red ribbon to tie a little wooden sign, with your name on it, onto the wrought iron bench I had provided months ago but that other bereaved people keep moving.

Anthony: And Ming?

Me: It was his idea to come with me to the cemetery with camellias. That was our plan, then we were going to come home and watch a comedy.

Anthony: I saw what you did next, Jules.

Me: Well Ming suddenly suggested going out for lunch at the Boyanup pub so we did and it was lovely! And he paid, of course, as he always does; he is such a gentleman, like you.

Anthony: But you always called me a tight-arse!

Me: Sorry, I got you mixed up with my dad. He was generous and you were stingy. Anyway, none of that matters now, Ants. Over lunch, Ming and I were reminiscing about funny incidents and we both still crack up about watching an episode of Midsummer Murders with you in which you said something like What an extraordinarily short woman!

The woman/character you were referring to was actually sitting down (which is why she seemed short to you). This was one of many first signs that we had Dementia in our midst.

Anthony: I didn’t know.

Me: I never told you. I didn’t want to embarrass you, Ants. You knew you had Parkinsons disease but you didn’t know about the dementia aspect.

Anthony: I know what I would have done.

Me: Oh great, heavenly hindsight – how kind of you!

Anthony: I would have done exactly what you did.

Me: Okay, okay, and sorry for being a tad argumentative on your deathday, but couldn’t you have given me a bit more of a warning?

Anthony: I did! Over and over again.

Me: I know! You had these TIAs and I kept thinking your death was going to happen any minute but you kept surviving, year after year, and that is why I was not at all ready for the actuality of your death; it wasn’t on my radar, Ants.

Anthony: I pushed your hand away on purpose, Jules.

Me: Why?

Anthony: I didn’t want you and Ming to see me die.IMG_0010

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I want you back: Imagined conversation 65

Me: I want to keep on talking with you during this week that I have dreaded since August began. Blogging our conversations is, I realise, a weird way of being publicly private and/or privately public and I am well aware of the paradox here but….

Anthony: You really do like to complicate things, Jules.

Me: No way! I would love to be able to simplify/compartmentalise/figure out the wild animal of this grief but I just cannot seem to get a handle on it.

Anthony: You know, when we first met and you were wearing a pink t-shirt, a long Indian skirt, sandals, and your amazing smile, something clicked but I didn’t know what it was.

Me: For me it was a textbook case of love at first sight. It didn’t matter that I thought you were the cowhand and didn’t realise for a few days that you were the actual patriarch so to speak. I was absolutely smitten and it was probably obvious – how embarrassing!

Anthony: I felt it too, Jules, but you were just a kid!

Me: You know that year before we got married where you got all lovey-dovey and admitted that you fell in love with me too way back when?

Anthony: Yes?

Me: Thanks for finally telling me that, because the unrequited thing was horrible. I guess you had already established a reputation for being the long-standing bachelor of our town and I think you rather liked this?

Anthony: Oh yeah, baby!

Me: We really do have a rather beautiful love story, don’t we.

Anthony: I haven’t even found anything comparable in Heaven.

Me: I yearn for you, Ants – it is like this long piece of string that I have to pull out of my throat every day. I know that sounds gross but that is exactly what it feels like to have lost you.

Anthony: Oh, Jules.

Me: I want you back, Ants.

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Having a laugh in the midst of grief: Imagined conversation 62

Anthony: I really liked what you wrote yesterday.

Me: Why, thank you, kind sir!

Anthony: The Boney M clip was wonderful.

Me: I knew you would appreciate that. I wish now that I had thought to play it to you in the nursing home. Oh well – the benefit of hindsight and all that.

Anthony: Yes, I did get a little tired of The Office, especially the American version.

Me: I know. Sorry about that but I loved it and it was a brilliant way of passing the hours in the nursing home. I would give anything now to be sitting next to you, holding your hand while you dozed, or stared, mystified, at a millionth episode of The Office, eating olives and sipping wine on a sunny Sunday like today. Or else, chatting with my mother as she did her hairpin lace, both of us on either side of you, our chatter inevitably putting you to sleep.

Anthony: She really did love me, that mother of yours, even though I broke your heart when you were still just a kid of 18. And then broke it again.

Me: Again?

Anthony: By dying.

Me: Oh, I see what you mean. Yes, she really did love you. To begin with, no. I am quite sure both of my parents were appalled that their innocent, teenage daughter had fallen for a middle-aged man who was at the opposite end of the spectrum of their belief system, Christianity. If I recall correctly, you were a self-declared atheist and, as a rather evangelical adolescent, I convinced you that an agnostic stance might be safer. We did have some rather heated theological discussions.

Anthony: Yes, I slipped into Heaven via the back door.

Me: What?

Anthony: Just kidding, Jules!

Me: One of things that most fascinates me about grief is the fact that it is, actually, really fascinating. I can watch that Boney M clip and cry and laugh in the same moment; I can remember the first moment I saw you and the last moment I saw you as if 40 years of knowing each other is a single, resonating clash of unexpected harmony. Now that you have been dead for nearly a year, I love you just as much as I did when you were still alive.

Anthony: I have never quite understood how your mind works, Jules, but if it is of any comfort, I miss you too.

Me: In just a few days it will be the first anniversary of your death which is so weird because it feels like it was just the other day. I am not quite sure what I am supposed to do on this day. Do I go somewhere – away? Ming has asked me the same question – should we go out for breakfast? What do you do on a deathday? August itself has paralysed me somewhat, Ants, which I did NOT anticipate. I feel like I am at some sort of event where you have to choose between various PTSD showbags!

Anthony: I will be having a similar day, Jules. I think it would be a good idea to simply have a nap.

Me: Okay. I just want to get to September and out of August.

Anthony: Perfectly understandable, Jules; after all, I was your knight in shining armour.

Me: You were also a horribly cruel, heart-breaking bastard! Remember our first argument, underneath the clothesline just after my dad died, and I called you a selfish pig?

Anthony: Shhhh! I am in Heaven now and I do not want to jeopardise that.

Me: I am so glad that we figured out it was a family farm, financial situation and not personal. 57-year-old bachelors do not usually get married. I think the expectation was for you to leave your inheritance to either your siblings or nieces and nephews.

Anthony: Why are you bringing this up now?

Me: Because I am not afraid any more of the backlash after we announced our engagement. I was so naïve then! You were so wonderfully brave (although I did wonder why we were taking a case of champagne to accompany our engagement announcement). This is hilarious in retrospect!

Anthony: Bravo, Jules!

Me: When I look back at that scene, champagne flowing, beaming expressions on every single face, I am amazed at what happened next.

Anthony: And…?

Me: Well, the funny/paradoxical thing is I actually do not care anymore about the person who hurt you most and I wish I had developed this ability to be indifferent earlier in my life.

Anthony: Make peace, not war.

Me: I thought the saying was more like, make love, not war, via John Lennon? Your roomie?

Anthony: There is no need to stoke old coals, Jules.

Me: Why do you not want me to tell the truth, Ants?

Anthony: Because I am already dead anyway. It does not matter!

Me: Okay….

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Anthony: Have a laugh, Jules!

Me: Good idea!

 

 

 

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Imagined conversation 50

Anthony: How’s Ming?

Me: Yes, Ming, it’s always Ming. What about me? When you were still alive the first thing you would always say to me is “How’s Ming?” instead of what you should have said….

Anthony: Hello, your royal highness; is that better?

Me: Sarcasm is the lowest form of wit.

Anthony: So is repetitiveness.

Me: Ming is fine and now recovering well from a dreadful bout of lovesickness, the details of which I will not divulge here but you know anyway.

Anthony: I only ever understood that when I thought I might lose you, Jules.

Me: Understood what?

Anthony: Lovesickness.

Me: Oh yes, that phase. I remember you crying down the phone and I thought you must have been pretending because it was so unlike your usual macho-ness. And the flowers you sent! Cheap, poignant and astonishing, almost as astonishing as your utterance of the words ‘love’ and ‘marry’ and I was just about to get on a plane to the other side of Australia to see a man who adored me.

Anthony: Those flowers weren’t cheap, Jules.

Me: It was too late, Ants.

Anthony: I was going to lose you, Jules.

Me: I lied to you and said I was just visiting a friend up north.

Anthony: I suspected and rang the travel agent and he broke protocol by telling me you were going to Sydney.

Me: Yeah, to meet a man who adored me instantly. I had finally given up on you. It wasn’t a game, or a dare, or an ultimatum; I really had decided that this confirmed bachelor, best friend, workaholic dairy farmer wasn’t suitable.

Anthony: I’m so sorry, Jules.

Me: Yeah, that’s what you kept saying on the phone to me the night before my flight; you used every lovesick cliché I’d ever heard. I took notes because I couldn’t believe what I was hearing and I wrote them on a big pad during my plane flight because I knew, if I didn’t write your words down, I would never believe you had said them.

Anthony: I suddenly realised I might lose you.

Me: Better late than never I suppose but you have no idea how ghastly it was to be chased around a penthouse for days on end by a man who had paid for my trip and expected some sort of recompense. Even when I read him bits from my notes of what you had said to me in that phone-call, through the locked bathroom door, he persisted.

Anthony: Why did you go?

Me: It was all booked and paid for and I felt obligated. How was I supposed to know you would have this almost-too-late epiphany about me?

Anthony: I feel like such an idiot now.

Me: Good.

Anthony: I thought forgiveness was important to you.

Me: It is, but a little bit of guilt doesn’t do anyone any harm.

Anthony: Jules?

Me: What?

Anthony: How’s Ming?

Me: Much better.

Anthony: That’s all I wanted to know.

Me: What about me?

Anthony: You are ferociously fine, Jules.

Me: And the best thing about this post?

Anthony: You are laughing?

Me: Yes!

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Dementia and hallucinations

Yes, I am still working through past blog entries in order to formulate a book, but I keep getting distracted by the present.

I don’t think even the scientists know whether the hallucinations people with Dementia experience, especially those with Parkinson’s Disease Dementia, are part of the actual condition, or a side-effect of the medications.

Tractors pulling Anthony’s trees down; long-lost friends and family (some deceased) visiting; a multitude of strange children making mischief; a room full of calves and dogs; a pirate ship; the strange ‘teacher’; the terrifying kidnappers; the wondering where I am ….

….even when I am right there.

After the terrible fright of a few months ago, when I thought Anthony was going to die, he has resurrected and, in his own words, is “better now.”

This month marks five years that Anthony has been in the high care section of the nursing home. He has outlived all of his prognoses (advanced prostate cancer, advanced PD) by years; he has somehow survived liver disease and kidney cancer. The Dementia component has been there all along but has only become noticeable over the last couple of years.

Dementia is, of course, very confusing for the person who has it but it is also confusing for the person caring for the person with Dementia. Moments – even hours – of lucidity can sometimes be punctuated with such bizarre stories that the carers are at a loss as to how to respond.

Even me, who loves him so much. Even me.

Recently, I have become so tired: of pretending I have to go to work (as way of leaving); of missing him; of this never-ending grief; of wondering whether he is okay when I’m not there. I have had to let go of the latter for my own sanity but I still worry about whether he is too hot or too cold (these thermostatic problems were the bane of my life when Ants was still at home.)

And what about Ming – our now 23-year-old son? Anthony sometimes mistakes him for a nephew and doesn’t recognise him as his only child. I don’t know how this feels as Anthony always recognises me, even if he is confused.

Ming is often ‘seen’ by Anthony in the corner of his nursing home room – as a toddler – and this particular hallucination gives Anthony immense delight. So I go along with it; what else can I do?

Perhaps the trick with Dementia-induced hallucinations is to go with the flow unless the particular hallucination is troubling.

Me: Nobody is cutting your trees down, Ants!

Anthony: Yes, he is – just look!

Me: I think it might just be your imagination and the Parkinson’s Disease?

Anthony: You always say that.

Me: Do you want me to get Ming to check it out?

Anthony: He’s too little, Jules.

Me: No, he’s a man now, Ants, and he can fix everything!

It is perhaps the ongoing, repetitive loop of the same conversation that can sometimes exhaust the carer. On the other hand, it’s familiar territory and I love to insert a bit of humour into the same old conversation and can sometimes make Anthony smile by saying “Are you totally insane?”

Yeah, bleak humour can sometimes be useful when it comes to Dementia-induced hallucinations.

And I am, and will always be, grateful to Anthony for teaching me so much about this often misunderstood and complicated condition.

 

 

 

 

 

 

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Dementia dialogues 0

Me: I love you so much, Ants.

Anthony: I wonder sometimes.

Me: What do you mean?

Anthony: The way you treat me.

Me: What?

Anthony: Like a bag of old rags sometimes. Look at yourself in the mirror!

Me: I don’t understand, Ants!

Anthony: It’s all right – I forgive you.

Me: Forgive me for what? I am doing my best! Why are you being so horrible to me?

Anthony: I just want to go home and see Mum!

Me: But she’s fine, Ants!

Anthony: This has been boiling up for ages.

Me: I don’t understand.

Anthony: Yes you do, and you only barely put up with me!

The above was an uncharacteristically angry and semi-lucid conversation during which I got my notebook out to record things exactly as they were said.

A marital row, I guess – no big deal. Anthony’s sudden mistrust and cynicism about me yesterday carried itself into today but was less acute. I hope this angry thing won’t last long.

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Friendships forged in nursing homes

When you place someone you love into a nursing home, the beginning is a blur. You don’t notice any of the other residents or their relatives; you don’t notice the staff. You fill out the forms and you answer the questions about incontinence and constipation and immobility with a gentle smile on your faked face. You cry secretly and often but you become very good at hiding your ongoing, endless grief behind an enormous smile….

…. until you meet someone who is experiencing the same kind of thing with her wonderful, but ailing, mother. N is the most amazingly resilient woman I have ever met. She ‘lives’ two doors down from Anthony’s room and she has the most beautiful laugh and the most poignant cry.

It only seems a moment ago that we were all playing a game of ‘Memory’ in the dining room – N, her daughter, Ants and me. Sometimes we were joined by others; sometimes we were asked to move to another room because our raucous laughter was too loud; now both N and Ants are too incapacitated to partake in such games except in a pretend kind of way.

These two wonderful people, Ants and N, survive and embrace each moment of each day with a kind of stoic acceptance.  And, within the tragedy of our ongoing grief, N’s daughter and I have become friends.

This friendship means the world to me because it is forged in the steel of our shared heartbreak. Thank you, Shaz

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Uncanny

Today I arrived at the nursing home in time to feed Ants his lunch after which he also consumed three chocolate bars – a Cherry Ripe, a Boost, and a Mars Bar (thanks, Mel!)

He chewed through all of this chocolate slowly – very slowly!

Me: Are you chewing every mouthful one hundred times?

Anthony: Yes, because I am enjoying it one hundred times.

But that’s not the point of this post. Even though Anthony’s previously loud voice has become such a whisper, this is what he said next:

Anthony: I can’t stop thinking about what X said yesterday.

Me: What? Was X here?

Anthony: Yes and he said “Where is Julie; we need Julie.”

And Ants actually repeated this a couple of times, and was adamant that X had said these positive words about me. So, whether Ants is deluded or not, I choose to believe it.

Good.

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Impasse

There is always a dilemma when you want to write a story that might hurt other people the way the story’s reality has hurt you.

Recently, I have wrestled with how to reconcile forgiveness with writing the truth of my decades-long relationship with Anthony, including all of the pitfalls.

The “love story” and “once upon a time” posts began to retell a story that has already happened. But, as soon as I ventured into writing the ugly bits of the story, I received some pretty nasty flak; some advice to be careful what I write;  and, paradoxically, some encouragement to keep writing the story; etc.

So, in order not to upset people, I’ve decided to continue writing this story on a different blog – an anonymous platform – from which I can divulge, in story-telling detail, the truth.

In the meantime, this blog will remain positive.

 

 

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Extraordinary!

Ever since I described Anthony as being in “good physical health” on my blog, which seems an hilariously ironic way of describing someone who has just turned 80, is living in a nursing home, with more diseases than I can count on one hand, Anthony has been remarkably fit!

It has been an extraordinary few days with Anthony walking (with his walker of course, and accompanied by carers), and talking with a bit more gusto, and smiling widely with the various staff who come and go from his room.

Today, my mother visited us in his room and it was such a delightful day. Even though Ants often refers to the mostly female staff as “those guys” he still gets a real buzz from the way many of these beautiful women flirt and banter with him.

Apparently Ants has been walking better and doing physiotherapy and occupational therapy better and he even demonstrated some arm exercises with the OT today in our room. It was hilarious and I am so grateful for these people who really do care about him!

Of course, he isn’t getting better. That would be, physiologically, impossible, but his extraordinary liveliness this week has been such a buzz. I know I’ve said this before, but Anthony is the most resilient person I have ever come across; he never complains even when I say no to his requests to come back to the farm (often his childhood farm, not this one). He accepts the status quo, accepts his health problems, accepts that when I leave to go grocery shopping and he says, “don’t be long, Jules”, I am not coming back until the next day. And this almost never comes back to bite me.

This afternoon, one of the OTs said Ants was, as always, invited to “Happy Hour” (a monthly event in the common room). His response was a perfect representation of how extraordinary and funny he is:

Anthony: Is that with all the old people?

Me: Yes, but it could be fun; we’ve done it before, remember?

Anthony: Do I have to?

Me: No, of course not!

Anthony: They’re all so old so no thanks.

And I am reminded again of the best gift Anthony gives me, not every day but often enough – laughter.

 

 

 

 

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