jmgoyder

wings and things

Imagined conversation 37

Me: Well, you’ll be glad to know that this third bout of anxiety is nearly over. I’m going to tell you about it here because I don’t want to forget what it’s like.

Anthony: Why would you want to remember it?

Me: So I recognise it when it begins to happen rather than being all-consumed by the time I see a doctor.

Anthony: Is it my fault?

Me: Yes and no. It’s because I miss you so much but it doesn’t feel like that at all. It feels like a sense of urgency – constant and about everything – an urgency to clean the house, to socialise, to write the script, to get the motorbike licence, to train Pip as a therapy dog, to do my volunteer visits. Everything becomes such a matter of urgency that I become incapable of doing anything,

Anthony: I thought that was depression.

Me: This is on top of that – this is extreme anxiety, the kind that makes your heart beat super fast and your hands shake and fills you with a kind of flitter-flutter of frenetic energy that beats around inside you but renders you immobile. It’s the kind of fear where adrenaline doesn’t kick in so it’s implosive.

Anthony: So did you get some pills?

Me: Yes.

Anthony: And….?

Me: And now I can function again, I can appear to be okay and I can breathe properly. The good thing is I know I won’t need the pills for long, judging from the last two experiences.

Anthony: Well, take the pills as long as you like, Jules. Just take a break from all of those things you think you should be doing and just be.

Me: Yes I think that’s the key – just being. Without the mindrush. Remember how I used to confide in you about these issues?

Anthony: Yes, I married a complicated woman.

Me: Ha! And you are so uncomplicated. Even when you were so ill and incapacitated, you were like an anchor, a safe place, a solid certainty. Now that you’re dead, I sometimes flounder.

Anthony: You’ll find your feet again, Jules. You always do.

Me: I understand other people’s grief so much better now, Ants, especially the fear thing.

Anthony: Maybe there’s something you don’t realise, Jules.

Me: And what’s that, oh wise one?

Anthony: I miss you too.

 

 

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Imagined conversation 24

Me: Tomorrow it’ll be exactly eight months since you died.

Anthony: I notice you haven’t been talking to me as much lately.

Me: I know. Sorry, I’ve been busy – really busy.

Anthony: That’s good, Jules and no need to apologise.

Me: I’m not over you or anything like that but the grief seems to have eased up a bit.

Anthony: Don’t forget me though.

Me: That would be absolutely impossible. I live in your house.

Anthony: Our house.

Me: Okay, our house but actually, technically, it’s still just your house because we never got around to the whole joint ownership thing. Your estate is still being sorted and then it’ll actually be my house – so weird.

Anthony: Yes.

Me: Everything here reminds me of you.

Anthony: That’s as it should be.

Me: Ha! That ghastly pink enamel teapot that doesn’t match the red Aga … little things like that remind me of you.

Anthony: You’re not going to sell up are you?

Me: No, of course not. It would break your heart wouldn’t it?

Anthony: I have a slightly different perspective on that now.

Me: I guess I do too. This place stopped meaning as much to me when you went into the nursing home.

Anthony: And now?

Me: Well, nothing really means as much to me now. I put on those boots you gave me today – you know the long ones with black rubber feet and brown leather up to the knees? I wanted to come straight into the nursing home to show them off to you with my new jeans and jacket and then I felt a bit sick when I remembered. That hasn’t happened for awhile.

Anthony: So what did you do?

Me: I got dressed up anyway.

Anthony: That’s my Julie.

Me: I don’t think I should sell up. Ming loves it here.

Anthony: You don’t have to decide yet do you?

Me: No.

Anthony: You sound low.

Me: Not really – just getting used to this gentle grief. I kind of miss the searing grief; it’s more solid.

Anthony: Can’t help you there, Jules.

Me: Do you miss me?

Anthony: Yes, it’s kind of boring here without you.

Me: Same here.

Anthony: I think you are absolutely marvellous, Jules.

Me: Where did that come from?

Anthony: Straight from the heart.

Me: It’s so strange to love someone so much when the person is dead.

Anthony: Who’s that then?

Me: You, you idiot!

Anthony: But I’m still here.

Me: I know that but I just wish I knew where here was.

Anthony: Here is here.

Me: Okay – so you are here, and here is here. Thanks, Ants.

Anthony: You’re welcome. Oh, and Jules?

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Me: Yes, Ants?

Anthony: You won’t get rid of that teapot will you?

Me: No way!

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Making friends with grief

I have learned so much about grief through my imagined conversations with “Anthony deceased” (as he is described in some legal documents I had to sign the other day) that I thought I’d share them here.

One of the things I’ve discovered is that if I wake up to what I know is going to be a day of acute grief, there is no point trying to evade it (one of the things I was trying to do). Now what I do is sort of greet it kindly, not exactly in a “Hi Grief” kind of way, more in an accepting way, almost as if it is a friend. After all, my grief about Anthony’s death, personified, has more empathy for me than anybody else possibly can.

In a way, the imagined conversations are a way of addressing Grief directly if that makes sense (if you are not sure what I mean then rest assured that I’m not really sure either!) Every time I write one of these conversations, even the ones that were a bit contrived and didn’t really flow) it helped somehow. I fought against doing it for awhile because I didn’t want people to think I was going nuts. I also didn’t want to become dependent on these conversations on a daily basis, to the preclusion of other more ‘normal’ daily activities. But I don’t care about either of those things now. Writing these conversations has often been fun and is sometimes quite enlightening.

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During a grief workshop I attended recently, Pat Kelly, a grief counsellor https://www.facebook.com/pat.kelly.18488169, pointed out that there is no one way of grieving. I found that very comforting in light of the imagined conversations I was/am writing because these have helped me more with my grief than any amount of kayaking, motor-scootering, cycling, swimming, socialising and volunteering (yes, I have been busy) have. All of these activities have helped enormously of course, but writing down conversations I imagine having with a now-well Anthony has been magical.

In re-conjuring Anthony’s voice as a younger, fitter man I have remembered all sorts of wonderful things that I’d forgotten – our holidays down south when Ming was young, our debates about whether animals went to heaven, our private jokes, our delight in the moonflowers blooming, his passion for motorbikes and classic cars, the parties, and so on. I’ve remembered poignant moments and sad times as well but mostly ‘talking’ with him has been a joy. I used to tell him everything even when he became less able to converse so, during the nursing home years, I sort of forgot about the way we used to talk and talk and talk. Remembering these conversations has been like a gift.

Making friends with Grief in this manner reminds me of how I ended up making friends with Dementia. In doing so, a lot of the associated fear diminished and a feeling of wellbeing returned.

I suppose since it’s my grief, after all, I am kind of making friends with myself again too. I’ve been working on that anyway with my wonderful psychologist, Daniella Princi https://www.facebook.com/yourintrinsiclife/ whose program has provided me with all sorts of interesting tools for living my life the way I want to live it.

One thing I know for sure is that Anthony would be proud of the way I am coping with his death and he would be chuffed to think I am pretending to converse him still. He was always very accepting of my idiosyncrasies, as I was of his.

Me: I’ve sort of made friends with the grief now, Ants.

Anthony: Good on you, Jules.

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Imagined conversation 14

Me: You won’t believe it, Ants!

Anthony: Try me.

Me: I went kayaking today!

Anthony: You what?

Me: I went kayaking! I had a lesson with this lovely guy and I only fell out once, when I was first getting into the thing.

Anthony: What lovely guy?

Me: The kayaking instructor.

Anthony [pause]: Okay….

Me: I think I might even buy a kayak, Ants! What do you think?

Anthony: You’re a bit impulsive, Jules.

Me: No, I’m not, Ants. I kayaked for three hours and I loved it!

Anthony: You’re a burster, Jules.

Me: Well, that’s a good thing isn’t it?

Anthony: Be careful.

Me: Why? I’m not scared of anything anymore. You’ve already died.

[Note to readers: It is now over six months since my husband, Anthony, died from pneumonia, after years of being in a nursing home with advanced Parkinson’s disease dementia. Since then, I have battled a couple of severe bouts of major depression (a condition I already had), with the addition of grief rendering me almost as bedridden as Anthony was in the end. But, with the help of my psychologist, and my own determination, I’ve begun to embrace new adventures, and kayaking is one of these. The imagined conversations are just that – imagined. I miss talking to Ants, so I do it here.]

 

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Imagined conversation 13

Me: I did something a bit spontaneous today, Ants.

Anthony: That’s unusual, Jules.

Me: I bought myself a silver bangle – from you to me. It’s kind of a combination of a Christmas and birthday present. It’s nothing to do with Valentine’s day, I promise.

Anthony: Thanks for letting me know.

Me: Oh thank you so, so, so, much for it, Ants. I love it!

Anthony: My pleasure, Jules, you deserve it.

Me: Well, yes, I think I do too because you know the last few years when you always asked me to go and get myself a silver bangle for my birthday….

Anthony: I’m glad I could be of service.

Me: No, you don’t get it Ants, I only pretended to buy myself those bangles because I didn’t want to spend the money.

Anthony: What a good disciple you are.

Me: Yeah, so I would wear an old bangle that you’d bought me years ago, and you bought me heaps, remember? You even chose them.

Anthony: I have impeccable taste. You tend to like chunky, showy jewellery.

Me: That’s a horrible thing to say and not true at all!

Anthony: I prefer the subtle nuances of the bracelet myself.

Me: Anyway so I was having a coffee in town at a new place (I’m trying to get out and about more because that’s what people keep telling me to do) and I just happened to look up and there was the shop – Baroque Design Jewellery Studio – and, whammo, I felt this sudden, nostalgic urge that you wanted me to go there.

Anthony: I had nothing to do with it, Jules. You have an overactive imagination.

Me: Are you sure? I mean the urge was so strong and I walked in and reminded Tim that I was the girl (yeah I know I should have said ‘woman’ not ‘girl’, how embarrassing) who used to come once a year to buy a silver bangle, or bracelet, as a gift to myself from my adoring husband who wasn’t well enough to accompany me.

Anthony: A likely story.

Me: Are you even listening to me!

Anthony: Sorry – wondering when you’re going to get to the point. Is it afternoon tea time yet? I’d love a coffee.

Me: As soon as I saw the silver cuff I knew it was the one.

Anthony: The one what?

Me: The bangle that you would have wanted to give me….

Anthony: I’m sure it was, Jules….

Me: So I explained to Tim that the reason I hadn’t been into his shop for a few years was because you weren’t well and you were in a nursing home.

Anthony: I remember him – great bloke.

Me: I didn’t tell him I’d been wearing bangles you’d bought me years ago, pretending they were brand new.

Anthony: You didn’t tell me either.

Me: Well, I’m telling you now! So that’s why I figure I am kind of owed around four years worth of bangles maybe.

Anthony: Interesting logic.

Me: And then I told Tim you’d died and could he give me a discount for being a bereaved widow. I didn’t really mean to say that, it just popped out so I explained that you’d taught me the art of bargaining, or is it bartering, and he said you’d be proud of me and he knocked off a third of the price!

Anthony: Amazing.

Me: It’s not amazing; it’s amazing! Are there any exclamation mark classes where you are because you really need to lift your game.

Anthony: Show me the bangle and I’ll give you my opinion.

Me: See? Here it is, Ants. It’s a cuff; I’ve never had one before. Thank you!

Anthony: Why are you so excited?

Me: Because you gave me a gift and it marks the first year of me surviving without you.

Anthony: I actually haven’t been dead for a year yet but, what the hell, you’re right, Jules, it’s a lovely piece of work. Get it engraved.

Me: Really? Are you sure? So, something like ‘To my darling Julie, with all my love, from her eternally-besotted husband, Anthony’?

Anthony (laughing): No.

Me (laughing): What then?

Anthony: Just our initials will do.

[Note: Tim Cunningham is the jeweller at Baroque. He was so kind to me today. Perhaps he sensed that just underneath my excitement at buying the silver cuff was the devastation of having lost the physical presence of Anthony. Anyway, I asked Tim if it would be okay to share his website here and he said yes so here it is: baroquedesign.com.au]

 

 

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Still Anthony

One of the things I’ve been most grateful for over the last few years of Anthony’s dementia is that his personality hasn’t changed. He is still easy-going, gregarious, humorous, accepting and gentle. Like Alice in Lisa Genova’s book, Still Alice, Anthony is still Anthony.

Or he was.

The other day, about an hour before Ming and I were due to give a talk to a group of Dementia Practice students, he rang me from the nursing home to say that Anthony had broken a staff member’s hand.

What?

Apparently Anthony has been exhibiting out-of-character behaviours recently, partly due to a urinary tract infection. He is antagonistic and physically resists being put to bed etc. It is painful for me to imagine such scenes as Anthony doesn’t behave like this when I am there so this has come as a shock to Ming and to me. I also feel terrible that someone was injured.

But, picture this:

You have no idea where you are. It’s 4pm but you don’t know that. Two women in uniform approach you with a big piece of machinery [hoist].They are trying to explain something to you but you don’t understand – something about a bed. As they begin to undress you, you try to say no, that you are cold, but you can’t remember the words so you lash out. You are so terrified that the adrenaline kicks in and you fight. If you could flee, you would, but your legs won’t work. You wonder where Julie is and why she’s not there. Who are these women, with their gentle voices and strong arms and why are they putting you into the machine?

Anthony is scared.

In one of the support groups I attend, a woman recently described how her husband’s gentle personality switched overnight; he became angry, jealous and threatening. She said, “I didn’t recognise him. He was a different person.” At the time I thought how lucky we were that this hadn’t happened to Anthony.

Ming and I admitted to the Dementia Practice students that the possibility of Anthony’s personality changing was a brand new challenge. Perhaps I should visit later in the day than earlier so that I can calm Anthony down. I know I thought of this idea ages ago, for different reasons. I’ll ask the staff what they think when I go in today.

I have been preparing myself for the possibility that one day Anthony might not recognise who I am.

It never occurred to me until now that one day I might not recognise who he is.

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My mother is a poem

My mother, Meg, is 82 and the age itself conjures images of white hair, stooped posture, decrepitude, and yet she defies all of this with her beautiful, generous presence in so many of our lives. She battles deafness, combats macular degeneration of the eyes, and has overcome breast cancer, multiple broken bones, grief and trauma, with the most incredible resilience I have ever seen in another human being.

Not only that, Meg is always willing to listen – even to criticism. She does listening better than anyone I know and her support of her three children, eleven grandchildren, and the so-far four great-grandchildren, is solid and unwavering.

Sometimes she and I get a bit impatient with each other because, even though we are so mutually attuned, we are very different. Meg is impetuous, fast and good at multi-tasking whereas I am cautious, ponderous and sometimes timid. Nevertheless, we share the same heart; we miss the same person (my dad who died so young); and we want the very best for the whole ever-extending family.

Below is my mother’s poem about death:

MARY

Her hand,

a strong but ageing hand,

slipped momentarily through

a curtain made of gossamer,

took hold

of both of mine,

and pulled me through.

Her smile a twinkle

and her voice like

ripples in a stream.

“Come, meet my son.

He’s waiting over there.”

And, arm in arm,

we moved

to His embrace.

My mother, Meg, is 82 and the age itself can often lead to intermittent thoughts and wonderings about death. This poem dispels the fear of death and, for me, breaks through the discomfort of talking about death.

My mother is a poem. We all are.

 

 

 

 

 

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Dementia dialogues 26

Anthony: I saw her in the corridor … earlier….

Me: Who?

Anthony: Julie – it was Julie.

Me: I AM Julie, Ants.

Anthony: Yes … it’s extraordinary.

 

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Dementia dialogues 9/10

Me: How come there’s water all over the floor? Did you tip your drink out again?

Anthony: Yes, because everybody is dead.

Me: What?

Anthony: This is a funeral home.

Me: No way! This is a nursing home – remember?

Anthony: All of the kids ….

Me: Are they still bothering you?

Anthony: I had to fight one last night.

Me: Did you win?

Anthony: Half and a quarter….

Me: Good on you, Ants! They won’t be bothering you again, I’m sure.

…………..

Anthony: Well come on, Jules – let’s go.

Me: Where?

Anthony: Around the block.

Me: Which block? The farm or the nursing home?

Anthony: The rose garden.

Me: What rose garden?

Anthony: Along the driveway!

Me: It’s too rainy and cold, Ants – sorry. Maybe tomorrow?

……………

The last several weeks have been a bit of a challenge for me because my anxious/depressive tendencies roared into my brain – WHAMMO! – when I mistakenly thought Ants was on the brink of death. I don’t want the knife edge of that grief again and am hoping that I am now better prepared.

Me: I saw an advertisement on TV the other day about cremation versus burial. What do you reckon? You know what I mean? For both of us of course.

Anthony: It’s far too early to think about that.

Me: Okay, Ants.

Anthony: There’s something ….

Me: Is it to do with my exquisite face?

Anthony: I wouldn’t go that far.

Me: What?

Anthony: But it’s quite nice, I suppose.

Me: Harrumph!

 

 

 

 

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“I just don’t understand you!”

Ming and I had a couple of altercations today that were impossible to resolve. This is so frustrating and painful and yet it points to the fact that we all think and feel differently and trying to match someone else’s way of doing both is impossible.

So what on earth do you do with irreconcilable differences? How does a 20-year-old son understand a 55-year-old mother who is trying to understand a 78-year-old husband? The only way, I think, is to accept the different points of view about everything, to accept each other (despite these differences), and to develop a capacity for sympathy. Empathy would be better, of course, but if the other person just cannot fit their great big size 13 feet (Ming) into your shoes, then agreeing to disagree is your best option.

I have always loved the concept of difference but I have never had it thrust in my face as much as the last few years, with Anthony’s declining health and Ming’s growing up. Neither of them understand that, at the center of this dynamic (in terms of age alone), I struggle sometimes to give them both what they need or want. And neither of them even think, unless I remind them (rather vociferously sometimes), that I might actually want to be considered too.

Perhaps love doesn’t require understanding? I am not complaining here (well maybe a bit!), or posing a feminist argument (hell, no – most of the misunderstandings I’ve experienced have been with women); I am just observing that sometimes you just have to accept the fact that you will never agree with the other person.

But you can still hug them and keep your “you are wrong!” thoughts to yourself. Ask Godfrey the gander!

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