jmgoyder

wings and things

Imagined conversation 51

Anthony: Didn’t you already write our 51st imagined conversation?

Me: Wow, that’s impressive, Ants; your memory is improving!
Anthony: So why are you rewriting it?
Me: Because I can. Also, my mother reminded me that we’d already had a conversation about the headstone.
Anthony: Yes, you do have a tendency to repeat yourself. Your mother is correct.
Me: That is pretty rich from someone who thrived on repetition for all of those years of dementia, or pretend dementia (I was never sure).
Anthony: But why the photo of you as a child?
Me: To represent lost innocence – the child who didn’t have any idea what was in store for her.
Anthony: You make it sound ominous.
Me: Yeah, sorry, it was a ridiculously vague juxtaposition, since deleted.
Anthony: Good thing you’re not on Twitter.
Me: Don’t tell me you are!
Anthony: No, but I do read about it after Gabriel delivers The Heavenly Times every morning.
Me: Since when do you like reading, Ants? I don’t remember you ever reading anything during our whole married life! You never even read my book.
Anthony: Ah, but I am reading your blog.
Me: Why?
Anthony: Because so much of it is about me.
Me: Your vanity never ceases to astonish me.
Anthony: You should see my musculature now, Jules. A couple of women, who are newcomers here, have nearly fainted.
Me: Oh please stop, Ants. I can’t stop laughing. Do you have wings too?
Anthony: Not an option – my shoulders are too massive.
Me: Ming has inherited those shoulders and a very healthy self-image, so thanks for that.
Anthony: Men have to love themselves just in case nobody else does.
Me: Yes, I remember catching you flexing your muscles in the bathroom mirror once and getting the giggles and you said something like that. You would have been about 45. I was a bit shocked.
Anthony: You were wonderfully, easily, shocked back then, Jules – naïve creature that you were.
Me: Not naïve anymore!
Anthony: Why is this headstone decision bothering you so much, Jules?
Me: At the risk of repeating myself, it is the finality of it – choosing the stone, choosing the words, choosing the price, choosing the company who will do it, and choosing whether to make these decisions by myself, or have Ming with me, or my mother, or other various friends and family.
Anthony: Do this by yourself, Jules.
Me: But what about Ming?
Anthony: He is living, Jules! He is living. He doesn’t want to be reminded of death – my death, or anybody’s death. I saw you cry Ming into your equation of grief the other night and I saw his empathy pummeled and it has to stop.
Me: Okay.
Anthony: Jules?
Me: Yes, Anthony?
Anthony: I don’t tend to hover over the graveyard, although I did notice the camellia you placed there the other day – very sweet.
Me: I hate that word, ‘sweet’!
Anthony: That’s why I said it.
Me: So what do I say to the rumours about me not doing your headstone yet?
Anthony: Nothing. Say nothing. Do nothing. Silence is golden.
Me: I guess you know now.
Anthony: Know what?
Me: How much I love your ferocious wonderfulness.

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Imagined conversation 45

Me: If you’d been a friend of yours, would you have visited yourself in the nursing home?

Anthony: No. I wouldn’t have bothered. I would have thought, poor old bloke doesn’t know what day it is.

Me: Okay so what if it had been me in the nursing home and our situations were somehow reversed?

Anthony: Ah, now that’s a tricky one. I probably would have visited once or twice then mostly avoided it. I know you hate this cliché, Jules, but I would have wanted to remember the way you were.

Me: Yeah that was sort of Ming’s attitude to you and certainly that of many others I guess. I think once someone is in a nursing home the generalised perception is that they are the living dead.

Anthony: Not just the nursing home, Jules – don’t forget the Dementia.

Me: I thought you thought Dementia was a taboo word in our conversations!

Anthony: Not anymore – I actually find it quite fascinating to watch all of the replays of how it affected me. You have the patience of a saint.

Me: I couldn’t have put it better myself, Ants; anyone would think I was putting the words into your mouth.

Anthony: I can think for myself, Jules. Give me a bit of credit.

Me: You seem to be twirling the subject.

Anthony: Are you talking about the subject (topic) or the subject (self)?

Me: OMG, have you actually read my PhD thesis?

Anthony: Plenty of time in Heaven, so yes.

Me: You never bothered to read it on Earth!

Anthony: Hindsight.

Me: Duh. So what! I’ve had hindsight since before I was born!

Anthony: Actually, Jules, I don’t think that’s possible but I’ll check with my new mates who, by the way, think you are wonderful. In fact, we are using some of your material for our Hindsight workbook for the more elderly dead people.

Me: Oh, okay. You guys might need to use a different phrase to ‘dead people’ – just a suggestion.

Anthony: Noted.

Me: Ants? Sorry, but you sound like a secretary – you don’t sound like you anymore.

Anthony: Which ‘me’ do you mean? The sickly, deathly, demented but extremely witty, me, or the hunk you married?

Me: I’m not sure.

Anthony: I’ve evolved.

Me: I beg your pardon?

Anthony: If our situations were reversed and you had been in a nursing home for many years, I would visit you often.

Me: How often?

Anthony: Every few days..

Me: Why?

Anthony: Because I would want you to know how much I loved you.

Me: Sometimes I feel a physical tug of yearning to visit your nursing home, even though you aren’t there anymore. During a couple of my motorbike lessons, the instructor and I went past the nursing home and I almost lost my breath.

Anthony: Julie.

Me: What do you mean, ‘Julie’? You never call me that.

Anthony: I am trying to get your attention, Jules!

Me: That’s more like it.

Anthony: There is something that I want to say to you that you really need to hear.

Me: That sounds a bit ominous.

Anthony: THERE IS NO HURRY.

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Imagined conversation 23

Me: I woke up this morning from the most terrible nightmare about you, Ants.

Anthony: Not very flattering, Jules, but good morning to you too.

Me: No, I don’t mean you were a monster or anything; on the other hand….

Anthony: Go on, I’m interested.

Me: Well, there are a few scenarios where I am asking you if you are seeing an ex-girlfriend – not a real one, that you really went out with – a new one who I’ve never heard of before. Anyway you say no the first time I ask you. Then, the second time I ask, you say yes, but just for dinner and you assure me that nothing untoward is going on. But, the third time, you admit that you’ve fallen in love with her.

Anthony: Ah the plot thickens….

Me: It’s not funny, Ants; I’m still trying to shake the nightmare off!

Anthony: Okay, sorry. So what happens next?

Me: During the rest of the nightmare, we are at a party. All of our friends and family are there and so is SHE. You are avoiding me and I’m upset but trying not to show it. I’m worried that you are overdoing it and amazed at how well you look considering how ill you are.

Anthony: So it’s another one of those dreams where I suddenly jump out of my wheelchair and start dancing?

Me: No. I like that dream; in this one there is no wheelchair in the first place. I keep wanting to ask you if the nursing home staff know you’re out and about and do you have your pills but it’s impossible to even get close to you.

Anthony: Am I the life of the party?

Me: Stop fishing! Yes.

Anthony: Good….

Me: Then a rumour starts circulating that you are going to announce your engagement to this other woman. Apart from the shock of hearing this, I am bewildered because you and I are already engaged. Anyway, as you are too gutless to tell me yourself, you send a friend over to tell me that you were never in love with me and that you are sorry.  I am devastated but try to act cool because people are starting to look at me sympathetically already.

Anthony: Well it’s not true, Jules.

Me: So I say to this friend that I’ve been with you for over twenty years but still waiting for you to choose a wedding date. Feeling desperate, I do a bit of a whispered rant to the friend about all of the years I’ve cared for you with your kidney cancer, prostate cancer and Parkinson’s disease, and the friend quietly commiserates,

Anthony: Who’s the friend?

Me: B.

Anthony: Oh, B. Great bloke.

Me: So then the most horrible scenario unfolds. You and this other woman announce your engagement to a shocked but delighted crowd.

Anthony: What do you do?

Me: I leave with as much dignity as I can muster. I find my car and drive away, sobbing.

Anthony: Maybe that other woman is your alter-ego?

Me: No, she has long, thick curly hair and a horsey face, and she’s ten years older than me!

Anthony: Oh.

Me: Is that all you can say – ‘Oh’?

Anthony: I’m sorry, Jules.

Me: What for? The nightmare, or what happened in the nightmare?

Anthony: Both.

Me: Well I guess it’s no more real than these conversations.

Anthony: Ouch.

Me: I felt so absolutely abandoned and alone and angry but I didn’t want everyone at the party to know how I felt.

Anthony: Maybe that’s what the nightmare was all about.

Me: When did you get your degree in rocket science?

Anthony: Superlative sarcasm, Jules – bravo!

Me: Anyway, I just wanted to tell you about it. It’s so good talking to you.

Anthony: Remember how we used to debate the difference between loving someone and being in love with someone?

Me: And how you used to say you loved me but you weren’t in love with me? Yes, difficult to forget that.

Anthony: But remember the day it all changed?

Me: Oh yes! I’d forgotten about that!

Anthony: Let’s save that for our next conversation, Jules. I’m exhausted!

Me: But I’m the one who had the nightmare! I hope I don’t have it again. Are there any nightmare tweakers where you are?

Anthony: I’ll see what I can do. And Jules?

Me: Yes?

Anthony: I’ve only ever been in love with one person.

Me: Who?

Anthony: Now you’re fishing.

Me: Well, who?

Anthony: YOU.

 

 

 

 

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8. Carrot juice

Several years ago Anthony and I embarked on a carrot juice diet and we went through two juicers (warranteed and replaced) in our quest for better health. We did this for around two months until our skin took on a rather strange, yellowish hue and Anthony developed arthritic pain. At the time, I did a bit of research and discovered that an overabundance of carrots can actually be harmful so we gladly quit the carrot juice and laughed ourselves silly about what idiots we’d been.

Looking back to that time, I now think that perhaps Anthony was showing signs of the Parkinson’s Disease Dementia that has now pretty much paralysed him, physically and cognitively. I guess I was trying desperately to find a solution?

I am a great fan of cold-pressed juice but I also know that it takes a hell of a lot of carrots to make a single glass of this elixir and nobody in their right mind would ever eat that many carrots in a single day. Nowadays I make juice with the outer lettuce leaves most people throw away, a single carrot, an apple, and orange, and a bit of ginger. This quest for health has consumed me lately due to my recent battle with mycoplasma pneumonia; I need to be well again and it has taken so long to get better. The hospital doctor did actually include (in his written report) my suggestion that my illness might have something to do with grief but, in the end, that was dismissed, the evidence of the mycoplasma bacteria was found, and I was given mycoplasma-specific antibiotics.

Anyway, back to carrot juice; once I was out of hospital I decided to go on a health kick. I’d lost five kilos so fast that my arms were (and still are) wasted and (hilariously for Ming) still stick-like. The other day, I reminded Anthony of our carrot juice adventure and he smiled. He remembered!

Anthony: But it’s good now isn’t it?

Me: Yes.

Anthony: I prefer chocolate.

 

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The dream

I have various versions of the same dream about once a week. It’s always some sort of party, or wedding, or get-together but the venues change from dream to dream. The ‘characters’ in these dreams usually include old friends, close relatives and always Ming, but he is often either a baby or child.

In each of these weekly dreams, Anthony is extremely incapacitated and in a wheelchair; the destination is hours away from the safety of the nursing home; and it’s only when we get there that I realise I have forgotten his medications for Parkinson’s Disease (the timing of which is vital).

So, in each of the dreams, I am either searching my handbag for a stray pill, or trying to decide whether to drive all the way back to the nursing home. I am totally panicked and trying to figure out who can help me get Anthony from his wheelchair out to the car, but people are milling around him, happy to see him but concerned about him being in a wheelchair etc.

Because this is a dream I am, of course, leaping tall buildings and smashing windows and unlocking safes in my frantic search for Anthony’s pills – all to no avail. So I get back to the party, or whatever it is, and am relieved to see that Ants isn’t slumped too badly in his wheelchair. I rush to him and kneel, apologising for forgetting his medications and all of a sudden he gets up and is fine – robust, loud, laughing and hugging me as if the whole thing was some sort of bizarre practical joke. The relief that washes over me in the dream is so wonderful that it wakes me up.

So, when I wake up, it takes me about a minute to get my bearings and realise it was a dream but it never makes me sad. Instead, this recurring dream gives me enormous joy because it reminds me in so many ways how fantastic our life together has been.

I hope I get that dream again tonight.

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Pip, the therapy dog

Recently, I have been at a bit of a loss for words, not for any particular reason, just feeling quiet. Also I have been quite preoccupied with Pip, our four-and-a-half-months-old miniature schnauzer.

I am training Pip to be a therapy dog and we are now a few weeks into “puppy pre-school.” So far, she is very good at sitting for food but not very good at obeying any other commands although she is house-trained simply because she is an inside/outside dog; and luckily she chooses outside to do her business.

Pip is already relatively well-behaved in the three nursing homes I take her to, including Anthony’s. For the most part, I keep her on a leash but in Anthony’s room she will now settle on her own pillow on the floor near his armchair for a good couple of hours. I keep her pillow, a container of dog biscuits and a water bowl in one of Anthony’s cupboards. In the other two nursing homes, the joy I see on some of the residents’ faces, when they see, pat or even hold Pip, is beautiful.

Anthony smiles at the way I fuss over Pip and I keep hearing myself sounding like an old woman with a little dog (ha!) But, despite his initial reaction to her puppyhood “It’s just a dog, Jules”, he and she have now bonded.

Me: Do you love her, Ants?

Anthony: Well who wouldn’t, Jules.

At home, Pip is now a hurricane of energy; she races in and out of the house and terrorises Jack, our Irish terrier who is still so in awe of her that he stands back when I feed them both and only eats Pip’s leftovers!

Every morning, I am greeted first thing with a deep growl from Pip, which is her rude way of asking me for breakfast. The closer I get to the refrigerator, the deeper the growl. Ming and I are getting a lot of laughs out of this hilarious new addition to the family.

Apparently I can register Pip as a therapy dog once she has undertaken further training so I am looking into this.

So, even though I’ve gone a bit quiet lately, it’s an accepting kind of quietness. I found out the other day that Anthony is now a ‘full hoist’ which means he is unable to walk at all. I had assumed that he was still maybe able to walk, using the walker, in the mornings, but I guess I was a bit nervous to ask the question because I didn’t want to know(?)

Oh how much I wish I had made more of the last time I saw Anthony walk using his walker – that shuffle-sprint-stall that I have known for nearly a decade. It seems impossible that he would now be more or less bed-ridden but I am an idiot to not have seen this coming.

And, as I contemplate whether to cry or not, I see from the front window of what used to be Anthony’s mother’s bedroom – now my study – a black fur-ball of absolute joy racing towards the front door.

Yipping with delight, Pip enters the quiet.

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Absence makes the heart grow fonder

I have been fluey for over a week now so haven’t seen Ants except for a quick visit on a day I thought I wasn’t fluey. But it seems to be a bit of a boomerang flu that keeps coming back so I have been staying away from the nursing home just in case it’s contagious and also because I am tired.

It is so, so, so hard not to visit him because I wonder how he is, mentally and emotionally. I already know that he misses me when I don’t come in for several days (like lately) and he seems to feel my absence in a visceral way. Sometimes he will say things to me like:

  • you abandoned me
  • who is your boyfriend?

And I am always too flabbergasted to give a coherent answer, which makes me look and feel guilty even though I am innocent!

Some staff members have told me that Anthony is particularly difficult to put to bed if he hasn’t seen me for awhile. This is so unbearable for me to imagine. I can’t ring him because he forgot how to answer a phone years ago.

I just rang the nursing home to give Ants a message that I will be in tomorrow and spoke to a beautiful nurse who said she would relay the message. But the burden of guilt is still terrible for me – terrible – and I think many carers of loved ones with whom they have been separated, due to the nursing home decision, feel the same.

See you tomorrow, Ants!

 

 

 

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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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Resting

I decided today to take another extended blog break. Instead, I want to concentrate on getting previous posts about Anthony’s Parkinson’s disease dementia into the form of a publishable book, or, at least, a series of publishable articles.

Most bloggers can relate to the need for a rest and I have been slackening off for ages, hardly reading anybody’s posts, not responding adequately to comments etc. despite how grateful I am for feedback.

To take a break from blogging will give me a rest from a self-imposed need to share. I think the Dementia Dialogues are important and I will continue to record and write those, but not publicly until next year.

Today, after Ming voiced his typically loud philosophising in Anthony’s nursing home room, Ants whispered “I know exactly what he means” but we were unable to get him to elaborate further.

I briefly jostled with Anthony, pretending to turn our hand-holding into an arm wrestle….

Anthony: Don’t! You might hurt me.

Me: Stop being so ridiculous, Ants – you’re not that delicate!

Anthony: Yes I am.

Me: What happened to the macho machine I married?

And then, without a beat, Anthony said, “He retired”.

So, with Anthony retired, and me taking a rest from blogging, it’s now Ming’s job to keep our story going.

In the meantime, Happy Christmas!

 

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“I love you” variations

I say this so often to Anthony that he has developed some rather cynical responses:

Me: I love you!
Anthony: Yes, I know.
Me: I LOVE youuuuuu!
Anthony: So you keep saying.
Me: Oh but I absolutely adoringly love you to the moon!
Anthony: Jules, shut up!
Me: But Ants, I love your big nose, your wide eyes, your weird ears!
Anthony: Your hair looks better.
Me: What?
Anthony: Stop fumbling.

I love him – I love our conversations, often full of mirth, irony, nonsense, joy, mystery and a strange sort of hope. Of course it wasn’t always like this; over the years it has been a very difficult transition from home to nursing home. Sometimes Anthony thinks he has just arrived so we have to go through the same initial conversation again.

What most amazes me is Anthony’s acceptance of what is. He has always been able to do this and is much better at going-with-the-flow than I am, and, incredibly, has never suffered depression. That illness seems to be mine alone and has been for some time and Ants sustains me with his incredible sense of humour.

Anthony: So why are you so down?

Me: What? Why do you think? You’re in a nursing home, Ming is down in the dumps, and I still haven’t produced that blockbuster novel.

Anthony: Don’t worry so much. I cleared the shed out and re-painted it and it looks wonderful.

Me: When did you do that?

Anthony: Yesterday.

Me: Well no wonder you’re exhausted!

Anthony: Jules?

Me: What now?

Anthony: I love you too.

 

 

 

 

 

 

 

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