jmgoyder

wings and things

Imagined conversation 60

Anthony: I thought we weren’t going to have these talks any more.

Me: You sound hurt.

Anthony: Not hurt exactly, more nonplussed.

Me: It is all the details of death that prevent any finality and, yeah, that dreadful word, closure.

Anthony: Like what?

Me: Like the stupid Probate thing – registering – via our lawyer, your Will to the Supreme Court – to prove that I am your beneficiary, executor, wife etc.

Anthony: So how are your inherited paddocks?

Me: Oh, swimmingly, Ants – the rain has been relentless! Anyway, I need some photo ID of you for this probate process and all I can find is a very scary portrait of you on an out-dated passport.

Anthony: Why is it scary?

Me: You look like a thug!

Anthony: So what happens next?

Me: Apparently, once we get past this probate thing, I will become officially entitled to everything – the house, land, your shares, your holiday house in Bermuda – everything!

Anthony: I thought you thought sarcasm was the lowest form of wit, Jules.

Me: And I thought death was simple, Ants. How could I have possibly anticipated the amount of red tape that would surround your death, or the length of time if would take for this probate thing?

Anthony: I am so sorry, Jules!

Me: Why? Not your fault but I tell you what, Ants, I am getting things clearly written and legal-easy for Ming in case I die sooner rather than later. You never know.

Anthony: You never know what is around the corner.

Me: You used to say that to me all the time in a funny way!

Anthony: Jules?

Me: Yes, oh wise one?

Anthony: Tell Ming that it is all going to be splendid.

Me: Okay. I will. And if it is all right with you, I would like to continue these conversations every now and then, for awhile.

Anthony: Good idea and I am relieved..

Me: Me too, Ants. I love you so much!

Anthony: And the whole of Heaven heaves for you too, Jules.

Me: Bleah!

IMGP0114

Photo taken before Ants got really sick – maybe 2007?

3 Comments »

Imagined conversation 30

Anthony: It’s understandable, Jules.

Me: I’ve been putting it off for two reasons: one is I didn’t want to do this last final thing because I wanted something to look forward to. I know that sounds bizarre but there is something quite lovely about picking out a headstone and figuring out the inscription. I didn’t want that to be over with.

Anthony: What’s the other reason?

Me: Just talking with the monument people via email was okay to begin with, then I started feeling a bit sick, you know, bargaining about the price.

Anthony: You’re right to bargain!

Me: Do you like the colour Ming and I chose?

Anthony: It’s quite striking – yes.

Me: Okay so ruby red granite it is. I’m going to the monument place on Monday. I’m a bit worried that I might get really emotional or else that I might just feel numb.

Anthony: You’ll take it all in your stride, Jules. Hold your head up and smile and pretend I’m with you.

Me: That’s a good idea.

Anthony: Once it’s done, you can bring the cross with my name on it home.

Me: Yeah, I thought the same. It’s still stuck in the mound on your grave. I had no idea it took so long for the dirt to settle.

Anthony: I didn’t know that either.

Me: I thought I’d be visiting your grave all the time but I haven’t. I mean I don’t get any sensation of you being there anyway – not really.

Anthony: I’m not there, Jules – it’s just my old bones now.

Me: I hate thinking about that!

Anthony: Well it’s true.

Me: I’ve had a few bad days of missing you, Ants. I wish I could have a hug.

Anthony: Maybe you could use that imagination of yours to be hugged by me whenever anyone else hugs you.

Me: Okay, I’ll try that. Ming’s a pretty good hugger.

Anthony: That’s my boy.

Me: I want part of the inscription to read “The most beautiful man in the world”. What do you think?

Anthony: I think you are prone to exaggeration.

Me: Ming loves the idea.

Anthony: Does he?

Me: He feels the same way.

Anthony: Now you’ve made my day!

Me: That settles that, then. I think I can face Monday now.

Anthony: You’ll be fine, Jules.

Me: Okay, I’ll take your word for it.IMG_4201

 

3 Comments »

Imagined conversation 25

Anthony: That was very funny.

Me: What was very funny?

Anthony: Your kayaking lesson today, with Ming.

Me: OMG were you watching? How embarrassing.

Anthony: Quite.

Me: The capsize?

Anthony: Is that what you call it?

Me: Yes, well another fear faced and conquered.

Anthony: You made it look so easy, Jules.

Me: Sarcasm just slides off your tongue doesn’t it, Ants.

Anthony: I’ve been busy perfecting the art.

Me: Did you see Ming do it too?

Anthony: His movements were much more fluid.

Me: But did you see when he accidentally fell in for the second time?

Anthony: Yes but I was mainly concentrating on your laughter.

Me: Oh?

Anthony: That was a beautiful thing to see – spectacular.

Me: Well, thanks, I think.

Anthony: It’s a long time since I’ve heard that guffaw of yours –  so raucous.

Me: Is that a good or a bad thing?

Anthony: It’s a great thing. You should do it more often.

Me: I can’t just conjure it up.

Ants: Yes you can. Remember the time you tried to get me to do aerobics with you to that Jane Fonda video?

Me (smiling): Oh yeah, you were so awkward.

Anthony: You thought it might stop the Parkinson’s in its tracks.

Me: Stupid idea and it didn’t work. Hey, but remember that time I fell in the duck pond? That’s what it felt like today.

Anthony: How could I forget?

Me: You were so unsympathetic.

Anthony: The look of shock on your face … priceless.

Me: The good old days.

Anthony: The good-to-remember old days.

Me: I’m going for my motor-bike licence next week.

Anthony: I know and I am trembling at the thought.

Me: You’re trembling! What do you think I’m doing?

Anthony: Quaking?

Me: Not sure why I took on these two new challenges simultaneously. I must be mad!

Anthony: My thoughts exactly, and Ming’s too I’ve noticed. And both of your instructors’.

Me: Common sense isn’t my forte.

Anthony: Neither is coordination. I heard what Ming said while you were driving to the river, by the way.

Me: He didn’t mean it, Ants. And, by the way, my coordination is improving!

Anthony: Yes he did and he’s right. I wasn’t exactly father of the century. I should have talked to him more, or listened.

Me: He just wishes he knew you when you were well. Some of the stories I tell about you, from before his time, he finds almost unbelievable.

Anthony: I liked what he said about me still being around through him.

Me: Yeah, it’s pretty disconcerting – his voice, mannerisms, gait, laugh; he’s like a clone of you!

Anthony: Is that a good or a bad thing?

Me: It’s a great thing! I just wish he remembered how you were before you got so ill.

Anthony: There are worse things. Anyway you’re doing a great job of giving him amazing memories for when you die.

Me: What? Don’t be so morbid!

Anthony: Like the vision of you capsizing in your kayak today. Unforgettable.

Me: Shut up.

Anthony: Just a thought.

Me: Argh!

thumb_IMAG0035_1024 2

 

 

 

9 Comments »

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?

12233253_1036413786397336_1573540691_n 2

Me: Yes, Ants?

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

Me: No way!

14 Comments »

Dementia and Depression

The title of this post is a bit misleading (intentionally) because it implies that Depression is an off-shoot of Dementia and, yes, sometimes this is the case.

Anthony, who recently turned 81, has Parkinson’s Disease Dementia but, even after having been in the high-care section of a nursing home for five years, he is rarely depressed.

Julie (that’s me), who recently turned 58, has Depression in the clinical sense – i.e. she has a disease in much the same way that Anthony has a disease. But, like Anthony, she is rarely depressed. There is a rather wonderful irony here.

I am not quite sure why I wrote the above paragraph in the third person except for the fact that I have been so deeply embarrassed by my diagnosis for so many years now that I find it difficult to admit. Admitting it now is my way of combatting the stigma that still exists, and rejoicing in the fact that there are treatments; that I have been helped by these treatments (medicinal and psychological); and that I have become sensitive to others who suffer like I used to.

In recent weeks I have had the most ghastly outbreak of Depression and yet, paradoxically, I have been able to function normally whilst visiting Anthony, looking after the new puppy, and interacting with friends and family. Ming is, of course, my priority, my favourite person, my rock but also, perhaps, my downfall in the sense that I feel I have failed him in so many ways.

There is a huge difference between Depression and being depressed; the former is a condition and the latter is a temporary mood. Obviously this is up for debate and I would appreciate feedback.

Dementia, on the other hand is, at least for Anthony, irreversible and ongoing/worsening. And yet he has the most amazing ability to comfort me, and to be so accepting when I leave him to ‘go to work’ (my latest ruse).

Me: I have to go to work. Will you be okay?

Anthony: Well, I’ll have to be, won’t I.

Me: So what would you rather have – me here with you or me making money?

Anthony: The money.

This has been a bit difficult to write so thanks for listening x

18 Comments »

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.

 

 

 

 

 

 

13 Comments »

Come on, baby, let’s go!

The other day, Anthony was so wide awake that his eyes were huge. He has big eyes anyway but the unblinking thing that happens with Parkinson’s disease sometimes makes them look enormous.

As I tried to widen my own eyes to match his, my face nose-to-nose with his, I quipped, “What big eyes you have!” But he has long forgotten the fairy-tale response to this and, instead, he fumbled one of his hands out from beneath his knee blanket, took one of my hands, brought it up to his lips, and kissed it.

Anthony: Come on, baby, let’s go.

Me: Okay. Where are we going?

Anthony: Let’s go home.

If only……

8 Comments »

Dementia dialogues 7

Me: Why were you so horrible to me yesterday?

Anthony: Because you wouldn’t take me home to see Mum!

Me: I’m sorry, Ants – it’s just that ….

Anthony: And, by the way, Jules – Mum is not dead!

14 Comments »

Commenting carefully

The other day I was terribly upset to read a post by a blogger friend that indicated she’d been hurt by someone’s comment. Since I had made a comment on her previous post, in which I’d suggested something, I was sure that I was the culprit.

So I commented again to apologize only to be reasssured that it wasn’t me. The relief was enormous but the experience taught me an important lesson and this is it:

NEVER GIVE ADVICE UNLESS SOMEONE ASKS YOU TO!

61 Comments »