jmgoyder

wings and things

A conversation with dementia

I realize that the title of this post sounds odd but sometimes, in my conversations with Anthony, it is as if I am talking to two people: 1. Anthony-familiar (Ants); and 2. Anthony-with-dementia (AD). Here is a rendition of today’s conversation in the nursing home.

Ants: When did you get here?
Me: Right this minute.
Ants: Where did you come from?
Me: Home.

AD: Ming and I got all of those calves rounded up and into the paddock in front of the house. They are all in good condition.
Me: Oh! When did you do this?
AD: Yesterday, after you left. We also fixed the fence.
Me: That’s fantastic – thank you.
AD: You don’t need to thank me – it’s my job.
Me: Yes, but it’s a relief to know all of the calves are okay and the fence is finally fixed. I was a bit worried.
AD: Ming is a good worker.
Me: Well you and Ming are a great team. It’s wonderful that you are teaching him how to do these things because I wouldn’t have a clue.
AD: We just need to fix up the other boundary fence now [trying to get up out of his chair]
Me: Well Ming isn’t here now so can we wait until tomorrow when you come home?
AD: Okay.

Ants: Bloody rotten about Ming’s back.
Me: Well your back isn’t the best but look how well you coped.
Ants: I think his is worse. He could have done anything if he didn’t have that back.
Me: We just have to accept it now, Ants – Ming has.

AD: I’m still going to need his help though, on the farm.
Me: Of course!
Ants: Tomorrow?
Me: Yes.

Tomorrow is Sunday so I will be picking Ants up around 10.30am to come home for the day, and Ming will take him back to the nursing home in the afternoon. Ants has requested smoked salmon and avocado sandwiches so that is easily done.

I would be lying if I said I am looking forward to tomorrow because, no matter how much I want Ants home, and no matter how much he will love being home, it is going to be an extremely difficult day for Ming and me. There will be a lot of lifting, toiletting, confusion, frustration, barely restrained angst (Ming), and barely restrained sorrow (me). By 3pm Anthony will begin to falter and by 4pm he will be unable to walk at all so I will have to get Ming to take him back to the nursing home at 3pm and Anthony will get upset.

On the other hand, perhaps I should just alter my thinking a bit. We will have four hours together, the sandwiches will be delicious and we will give Anthony a million hugs. In fact, I reckon the whole hug thing is underrated because, during today’s conversation, I decided to give Ants a hug every time it got a bit too confusing for me and his big/small arms around me were much more powerful than any words.

I will just have to tell Ming to go easy on his habit of hugging Anthony rather ferociously because it scares the hell out of Ants!

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Dementia and bewilderment

Yesterday afternoon Ming and I visited Anthony at the nursing home in the late afternoon. I had blue cheese, crackers, olives, pate, pistachio nuts and ripe plums. We had a bit of a feast together and everything seemed okayish except that Ants was quite confused (which is normal after 4pm).

Then, when we went to leave, I kissed and hugged Ants and told him I loved him but his face was stony. Ming lingered a little longer with Ants and told me later that Anthony had said, “I don’t know why I love her any more.”

Of course I was very hurt to be told this but I explained to Ming that Anthony has these extremely lucid moments in the late afternoon (in amongst the confusion of not quite knowing where he is, temporally and geographically) where he feels/KNOWS he has been abandoned.

“Who will help me get to bed?” Anthony had asked me earlier.

“Where am I?”

“Will you tell the somebodies that I am here?”

“But where are you living?”

I am much more patient with Anthony’s confusion than Ming is – of course – and Ming finds it difficult to match this very sick, old man with the guy I fell in love with all of those years ago. Telling him stories about the way his dad used to be helps a little, but not much, not any more. Stories about Anthony’s robust energy, laughter and farming prowess fall short for Ming because he has no memory of the Anthony-before-illness. None.

Sometimes I wish I could give Ming my own memories of Anthony but I can’t.

And yet, when I see Ming talking to anyone and everyone, and being the life of the party, and taking over various responsibilities on this farm, I see Anthony all over again – the way he was – and his Ming clone buoys me up!

Anthony’s bewilderment is mine too and it is very hard to realize now that he thinks I have abandoned him. “I don’t know why I love her any more.”

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The Land of Blah

For several days now I have been in and out of the Land of Blah – you know, that place where, even when you stub your toe badly, you can’t be bothered saying ‘ouch’. It’s a funny sort of place, this Land of Blah, but not in a way that makes anyone smile; smiling is kind of frowned on here because it depletes energy and you need energy to get out of the Land of Blah.

I never choose to visit the Land of Blah but sometimes I accidentally wake up there (nightmares can do this), or else I am sitting with Anthony in his room in the nursing home and I am transported into the surreality of his confusion so much so that his blank expression becomes mine.

Sometimes I meet people I know in the Land of Blah and it shocks me. ‘What are you doing here?’ I feel like asking them but of course I don’t because it is a place of such silent mystery and private misery – a paradoxical place of in-between.

I don’t like it in the Land of Blah so I usually manage to clamber out and up into my normal life. And this is what I see: a beautiful peacock family.

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Robyn's photo

And the Land of Blah once again recedes into its own grey nothingness.

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House of cards

We live in a very old house – part of it is over 100 years old and, ironically, it is that side of the house that is the most structurally sound. Other parts of the house have become problematic over the years – bricks crumbling on one side, the ceiling in the big bedroom breaking one day when a builder put his foot through it and nearly fell into the house when repairing some of the roof. Obviously these things have now been repaired (well, bandaged!)

On the weekend a few more things fell apart; the back veranda door fell right out if its grooves, onto an outside table (it has been threatening to do this for some time). Luckily, the table saved it from smashing into a million pieces of glass. Then its accompanying fly-screen door fell out of its grooves into the house (these two door have a very close relationship).

Then, as if all of the doors in the house were following some sort of evil ritual, the shower door in the bathroom also fell out of its hinges – well, sort of. You see, it was a sliding door that had stopped sliding, so, in order to get into the shower, you had to hold your breath and squeeze through a small gap. Yesterday, Ming became so annoyed with this that he took half of the door off and propped it against the remaining bit of the door. He didn’t prop it very well, however so, when I had to go to the loo in the middle of the night, I bumped into it and it fell into the shower recess. Thankfully, it didn’t smash and is now outside with the rest of the rebellious doors.

Today, the kitchen door is nearly off its hinges, the front fly-wire door doesn’t close unless you force it to, and the key to the glass front door won’t work properly (which means we often have to climb into the house through a window, although that won’t be necessary anymore since we now have an almost door-less house).

Ming has been trying to fix all of these things this morning and has done a great job and I am very proud of him for trying to do this kind of thing by himself when he has never been taught. I like the way he is figuring out how to fix things without anybody’s help and with very little nagging from me. He is doing jobs I used to watch Anthony do, and he is doing them willingly and cleverly.

I had a pretty grim weekend with all of the doors in my own house-of-cards breaking, or falling, but I guess that’s what has to happen before the ‘fix you’ thing can happen. Anthony always waited until things were totally broken before he would address the situation: doors, pumps, hoses, fences, vacuum cleaners, me.

My pompholyx was finally healed enough for me to visit Ants yesterday and, when he saw my scarred hands, he reached out and stroked my wrists with his cool fingers, and watched me carefully as I smiled through unshed tears of utter misery at being separated from him.

Me: I can’t even do the bloody dishes because I am not supposed to go anywhere near rubber gloves or detergent.
Ants: Well bring me home and I can do all of that for you!
Me: But Ants, it’s nearly 3pm – it’s too late to bring you home now and, I hate to say this, but you are too sick with the PD to help me – you will only make it all harder.
Ants: (Silence)
Me: Oh great, so have I hurt your feelings now?
Ants: No.
Me: As soon as my hands are better I will pick you up to go out – is that okay?
Ants: Has to be, doesn’t it.

Then, surprisingly mobile for that time of day, Ants walked me out to the parking lot and waved goodbye. I stopped at the end of the driveway to the nursing home to check in the rear vision mirror that he was going back inside the nursing home. I watched as he slowly turned the walker around and limped back to the nursing home doors which opened automatically. And, when he disappeared through those doors, I tried not to think about anything except how well those doors worked!

Oh and the ducklings keep getting through the faulty door of their chookpen – argh. In one more week they will be too big to get out until I open the gate (which hopefully won’t break before then!)

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The best thing about a house of cards is that it is so interesting!

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The advantages of having pompholyx

Sorry but I am a bit obsessed with my condition. This time I have decided to give it a positive spin.

The advantages of having pompholyx:

1. You cannot go anywhere near detergents of any type, so you are not allowed to wash dishes, clean the bathroom or do the laundry, which means someone else has to do all of these things for you. (Thank you, Ming, oh and don’t forget to vacuum the house).

2. If you have freckly hands, and you don’t like your freckly hands, you will love how, once the skin peels off, so will the freckles.

3. Exercise is not a good idea if you have pompholyx on your feet so, even if you weren’t madly exercising every day, now you don’t have to feel guilty about that.

4. It is a conversation starter. People tend to find it quite entertaining to hear about your pompholyx, and fascinated by your suppurating sores. It is, however, best to keep these show-and-tell conversations to less than 10 minutes I’ve discovered.

5. It’s good assertiveness training. For example, when people tell you to stop scratching at your hands, you can say (loudly, if you wish), “I will scratch at my hands if I want to scratch at my hands!” I have had to say this to Anthony, Ming and friends on several occasions.

6. You have learned a new word – pompholyx (which derives from the Greek for ‘bubble’ I think).

7. If someone you only vaguely know sees you at the post office and wants to give you one of those spontaneous hugs that you are not in the mood for, you can throw your hands up and say “Don’t touch me – I’m diseased – see!”

8. It’s also a good way of frightening small children who are behaving brattishly, although I haven’t tried this yet.

9. Doctors are extremely impressed with your extensive knowledge of a condition they have never heard of and they look at your hands and feet with the glee of a new discovery. This gives you the brief glow of what it must be like to be on the red carpet.

10. You discover that you have a tonne more of empathy for all who are suffering any kind of pain. This is the best advantage by far.

Ming did the washing, vacuumed the house, did the grocery shopping and saw Anthony this morning. This afternoon he has gone back to see Ants, go to a movie and then he is bringing pizza home. Wonderboy!

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Daybreak, heartbreak and other breaks

Yesterday, Ming went to see Anthony at the nursing home at around noon because, even though I didn’t see Ants on the weekend (because I was having a bit of a break with my friends at a nearby chalet), on Monday my stupid hands had become a bit infected and very sore and I felt unable to make the journey into town. But by 4pm I couldn’t stand not seeing Ants so I drove into the nursing home and arrived in Anthony’s room at 5pm.

Ming had already told him, earlier in the day, that I wouldn’t be in, so he was surprised and absolutely overjoyed. “My beautiful, beautiful girl,” he kept repeating. His dinner arrived and we shared a beer and I helped him with food, phone and television and then I had to go home again. I was probably in there a bit over an hour and, by the time I left, Ants was a bit confused as he always is in the evenings now. But he was happy! And he didn’t mind that I was going home at all. For me, the relief that he could say goodbye to me happily was so wonderful that I drove home on a bit of a high.

But every day is different of course. So today, when Ming and I visited for a couple of hours in the early afternoon, Anthony became so sad when we had to go (including begging us to take him with us) that it broke my heart all over again because he even articulated it: “When you both leave, I get so upset.”

Ming is better at handling this than I am. “Dad – pull yourself together! We’ll see you tomorrow!” For me it is much more difficult to extricate myself from Anthony’s heartbreak so I tend to prolong goodbyes with so many kisses and hugs that Ming nearly vomits!

I guess, because I don’t have a routine of what time I visit Ants (except that it is nearly every day), and the fact that I am not bringing him home so much, because he is too heavy now and quite often unable to move or walk without help, every single day has become an unpredictable journey of fear. The other wives of the other men Anthony’s age all have a routine; they visit their husbands at the same time every day, but these wives are in their 70s or 80s and live nearby.

This is not me complaining or asking for advice; it’s more of an attempt to give some insight into the unpredictable nature of PDD (Parkinson’s Disease Dementia) and how one day, no matter what time of day, Ants might say, “Okay, see you tomorrow, Jules” and the next day it might be “Please don’t leave me, Jules!” I can never know what to expect in any way at all – again, no matter what time of day, although evenings are worse – lucidity, confusion, joy, fear, confusion, love, hope, conversation, confusion, helplessness, uncertainty, disorientation, confusion, misery ….

To grasp my husband’s big, old hands with my younger infected hands today was very painful because he had a grip I haven’t felt for a long time – he held on tightly until I said “You’re hurting my hands, Ants!” and he immediately released them. It was worth it though, because he lost his grip a couple of years ago (PD).

On a lighter note, I am having a break from cooking tea for Ming because, for the first time ever, he is doing it all by himself – yay!!!!!!!!!!!!!!

And the ducklings took a break from Godfrey (when he wasn’t looking!) to take bread out of my hands.

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It is quite possible, of course, that, due to recent circumstances, I have either had, or am having, a nervous breakdown. That would be a very convenient excuse for not answering the phone, not opening a month’s worth of mail, not keeping up with blogs, and blogging in a way that is almost ridiculously high and low – sorry!

Oh, Home and Away is on in 5 minutes – now that is a break from reality – haha!

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Adjournment

Ming and I were in court again today but, due to a glitch in communication between the police and our lawyer, his case has once again been adjourned – for another three weeks.

I thought today was the day Ming would finally plead guilty so I was a bit agitated as we waited in the waiting room with a fascinating assortment of other criminals. Ming was dressed in a white, collared shirt and black pants (not jeans) but, on the way into town this morning, the button on his pants popped off so, not being the type to have a sewing kit in the car, I just told him to make sure the zip was up when he faced the magistrate but not to fiddle with it too much because that might look a bit odd. This was made a bit difficult by the fact that his shirt had to be tucked in at our lawyer’s advice.

It was weird to be sitting and waiting, more worried about Ming’s pants than the outcome, and my recent hand condition (the pompholyx I wrote about awhile back, which has come back again), started to erupt in front of my eyes. It was like a scene from a science-fiction movie!

All of the little blisters on my hands started to join each other until, one after another, big blisters formed – between my fingers, on the palms of my hands and on my wrists. Okay – gross-out alert here – then, as I rubbed my itchy hands together nervously, all of the blisters started to burst and leak, then re-form, again and again. Ming was so disgusted and concerned by my leaking hands that he, too, lost focus on the court case. This was our conversation before the hearing:

Ming: Will you stop rubbing your hands, Mum!
Me: Look at this blister! OMG it just appeared, Ming!
Ming: Don’t touch it, Mum. Oh please – I am going to vomit!
Me: Your zip is down again.
Ming: What? Oh, okay, don’t worry, I will pull it up again when I stand up.
Me: There’s the lawyer Ming!
Ming: Don’t shake his hand, Mum, please!
Me: Don’t show him your zip, Ming, please!

Lawyer: Hello, you two.
Ming: Hello (stands up awkwardly to shake lawyer’s hand whilst surreptitiously pulling up his zip).
Me: Hello (sitting down with my hands in my pockets but with a big grin on my face to make up for not shaking his hand).
Lawyer: It could be another adjournment.

He was right!

[Note: I am taking off tonight to spend time with friends at a chalet nearby so will catch up with other people’s blogs on Monday – in meantime have a great weekend!]

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The smile

Not quite sure how a light-hearted bird blog transmogrified into Julie’s gutspill but I am hoping to turn that around again soon. Tomorrow is Ming’s second court hearing so I guess I am a little bit anxious because I have just found out that this is when he will plead guilty. Apparently there is no risk that he will be whisked off to jail tomorrow so that is good and I am no longer sure what the hell I am crying about any more. Sad and happy tears look exactly the same, so it’s confusing.

Queenie camouflages the chicks so well that they are almost invisible to predators. I wish I could do this for Ming but he is a little too big and obvious!

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Yesterday afternoon I took two beers into the nursing home and Anthony and I had a drink together (the way we always used to at home). I apologised for my melodrama yesterday and he just said ‘Any time, Jules – I know you.’ Mmmm!

Then we had a rather weird but lovely interchange:

Ants: I just want you to come home.
Me: You mean here?
Ants: Yes, here – Bythorne.
Me: We’re not at Bythorne now, Ants, we’re at Wattle Hill Lodge.
Ants (trying not to look confused): That’s right.
Me (trying not to notice his confusion): Exactly – this is our second home.
Ants: So why are you leaving?
Me: Because I have to take dinner home to Ming.
Ants (hallucinating): Is that Ming there in the corner?
Me: No – he’s at Bythorne.
Ants: So where are we now?
Me: Wattle Hill.
Ants: So where is home?

At this point, I felt a bit lost, so I knelt down in front of him and threw my arms around him and said (rather profoundly I think now haha!) “Wherever you are, Ants, that is my home.”

And I finally got a bloody smile!

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Duckling update

Well the three ducklings have grown so quickly that they are almost too big to squeeze through the fence of the yard I put the gang in at night. They free range with their ‘minders’ all day.

Here’s a picture of Seli and Godfrey guarding the Twins.

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And here’s one of Ola watching over a sleeping Michael Jackson (the dancing duckling).

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I took a whole lot of better photos of all of them but had to delete these because Ming’s smashed ute (truck) was in the background. The gang + ducklings tend to hang out underneath it because it is near the pond. We have covered the smashed-in front of the ute with a blanket so that visitors, especially family, won’t be upset if they see it. The rest of the ute looks normal, with the tray intact. I wish we could get rid of it but we are stuck with it in the back yard for now until we try again to claim some insurance. Every morning and every evening, when I let the gang out, or put them into the yard, I have to walk past the ute.

There is also a clear view of the ute from the kitchen window, a constant reminder of the accident and everything since. And when I frolic in the dirt, and offer prayers to the sky, and watch the pea-chicks climb the avocado tree, or cry until my body is cramped like a dead leaf, I am always right next to the ute.

Ming brought Ants home for the afternoon yesterday and I (rather dramatically) threw myself into his chest and soaked him with some of these endless, futile, enormous tears. He held me and said nice things to me and then asked me about the ducklings.

“When are we eating them?” he asked.

I stopped crying immediately. “What the hell are you talking about? We are not eating them, Ants!”

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Dust bath

My previous post published itself before the brilliance of its second paragraph – oh well!

Of course the second paragraph wasn’t brilliant at all – it was just something about how I enjoyed sitting, even scrambling a bit, in the dirt near the chook yards the other night. I was wearing my best white trousers because I had just come back from town, so I hesitated, not wanting to get them dirty.

Then, a swirly sort of thing happened and, without any hesitation, I plonked myself onto the ground and, yes, copied the dust bath antics of some of the birds. Well, I tried! I need a bit of practice I guess, but it was a hell of a lot of fun learning.

I am very glad Ming was out because he might have gotten the impression that I had gone mad. Not at all! Now that I am no longer worried about my clothes getting dirty, I am going to join the birds in more dust baths; it’s quite refreshing to get right down on the ground like they do.

What I like best about this dust bath thing is the way (if you are a human) you just have to let go of your uprightness, your inhibitions, your idea of ‘clean’, and every shred of your self-consciousness.

And once you are thoroughly dusted, you can lie on your back on the grass and look up at the sky and hope that one day Godfrey will love you back again. But, just in case he doesn’t, you say a prayer.

Dear God, I offer you my sleeping, so that you can rescue me from my nightmares and find me a small comfortable cave where I can rest.

Dear God, I offer you my eating, so that you can help me to swallow the fairy floss that tastes like lemon peel, so that you can help me to swallow the boringness of grated carrot, so that you can help me to climb the avocado tree for that one last piece of fruit.

Dear God, I offer you my walking around, so that you can help me to stop circling myself, and build a new path with lots of daffodils and maybe a few trees for the birds.

Dear God, I offer you my heart, so that you can help me get it off the treadmill and beat normally again. I offer you all of the ugly horribleness of me, so that you can help me to be beautiful again and, if isn’t too much trouble, I would like my freckles back please.

Dear God, how did you do all of that so fast?

I’m a little dusty!

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