jmgoyder

wings and things

Tomorrow is always waiting for you.

Today was pretty awful and was made worse by a mother/son argument that escalated into recriminations, guilt, and ‘walk away’ tactics. To some extent, this worked but Ming and I were still so miserable – he in his shed and me in the house. So we began texting each other and have now established that I am the boss and he is the slave and he has even called me ‘Commander’; this is a good move.

Oh the joy of tomorrow! Of course tomorrow brings a fair few uncertainties but it mostly brings the excitement of anticipation, adventure and something new and fresh … and a new Ming, a new me and, maybe, a new Anthony!

Tomorrow is a gift.

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Guilt

I thought it was time I owned up to the fact that I am definitely not the wonderful, caring wife all of the time. The reason I am admitting this is because hopefully other care-givers will forgive themselves for the things I have to forgive myself for.

Anthony’s visits home are becoming more difficult and, consequently, less frequent. For example much of today was spent in the world of ablutions. With Parkinson’s disease, everything slows down and continence is a problem. Luckily, Ants (who looked after his own mother when this happened) doesn’t get the least bit embarrassed any more by the ‘accidents’ and I try my best not to be impatient and/or revolted.

On our second slow trip to the bathroom, I growled at him, “This better be the last bloody time, Ants!” And, to my shame, I also said, very impatiently, “Just walk, Ants – it’s only two more steps to the loo – WALK!” But, as soon as I raised my voice, he whispered, “Sorry, Jules” and my heart broke and I became gentle again.

After the toilet adventures, we were all back in the kitchen while I prepared lunch – another ordeal because Anthony isn’t good with cutlery now and makes a terrible mess which distresses him. Also, he can’t swallow properly so drools a lot (we always have a ‘dribble rag’ nearby) – I escaped to my little office at the back of the house. I should have been in the kitchen with Ming and Ants but, even after just a couple of hours, I wanted to escape.

Ming wanted to escape too and it was almost as if he and I were doing shifts with Ants. While I dealt with the ablutions, Ming escaped to his shed and, while he and Ants ate lunch, I escaped.

I am not sure what I am escaping from but the diminished presence of Anthony seems to suck the energy out of me. We sit together and there is NO conversation most of the time. He is silent, blank-faced and so bent over that his face nearly touches the table.

One of his favourite shows was on TV (Doc Martin), but he can no longer focus or understand what is going on, so, at one point, I turned the volume down so we could talk but by 2.30pm he was beginning to visibly wilt. At that point, Ming came back from his shed again and I whispered, “Can you take him back now? I can’t stand another minute of this nothingness.”

So Ming has just taken a reluctant Ants back to the nursing home and I am wishing that I had hugged him more than three times. His Parkinson’s is beginning to win over the medications now so he is increasingly immobile – it will be a wheelchair soon. Then he will be bedridden. Then he will have to be tube-fed.

Yes, life is a good thing and today had its good moments as well, of course, but to die sooooo slowly from this ghastly disease is a form of torture – not just physical, but emotional.

I love Anthony so much but I couldn’t wait for him to be gone again and I will have to forgive myself for that. Again and again. Guilt.

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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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When the carer gets sick

It is now a few weeks since I was first afflicted with pompholyx on my hands and I have now seen three doctors (well, four, if I count Dr Google) and I now have all the antibiotics, steroids and ointments I should need to get rid of it. The blisters on my hands have now been replaced with peeling, bleeding skin and I am finding it painful to do everyday, normal things like turning a tap on and off, prepare a meal and even holding the steering wheel of the car hurts. I’ve read heaps of articles about pompholyx and seen some gruesome pictures that look just like my own hands, so I feel quite knowledgeable about the condition now.

A few days ago I noticed a few blisters on my left foot too but, like an idiot, I just kept hoping they’d miraculously go away, but this morning I woke up to two very swollen feet, with all of the toes on one foot covered in sores and one on the other foot too. (I think my feet must have been scratching each other in my sleep!) The left foot was so painful that when I jumped out of bed to take a closer look, I got a shock when I could hardly walk.

My first thought was how could I take Anthony out for afternoon today? That was my plan and I had told him yesterday when I had two normal feet. As usual my incredible mother came to the rescue and visited him and I spoke to him twice on the phone, the first time quite tearfully but the second time (my mother rang me from his room at the nursing home) more cheerfully.

There are a lot of mixed opinions about pompholyx but one thing I have found in almost everything I have read about it so far is that it can be caused by excessive perspiration. This makes a lot of sense to me because, despite the fact that I have always had a problem with this during our Australian summers, it has never been as bad as this year. In fact, a few weeks ago, I joked with a friend that I might have to get botox to stop it (I had read about this treatment and this was just before the pompholyx hit me). It turns out that this may well be a necessity for me if the pompholyx doesn’t go away with all the other stuff I’m taking for it. I could get my frown lines done too – haha!

On the scale of diseases, this is certainly minor and I know many people and friends who are battling much more severe health challenges, diseases, chronic pain and, yes, grief. So I feel a bit embarrassed to be so upset about what has suddenly happened to my hands and feet, but the main reason I am so upset is because it is obviously going to stop me from seeing Ants for awhile.

Ming, who did a whole bunch of errands and other jobs for me today, said (during one of the Home and Away commercial breaks), “I’ll do anything you want me to, Mum – just give me a list!” Then we had a conversation about stress:

Ming: You must be really stressed – look at your foot!
Me: I am now twice as stressed as I was before you said I must be really stressed so shut up!
Ming: Why can’t you just have fun, Mum?
Me: I can’t really have fun with this thing with my hands and feet.
Ming: I could take you out for lunch, to the movies even – popcorn? Pizza? I’ll do anything!
Me: Could you do a load of washing, vacuum the house, wash the dishes, do the groceries, visit Dad and bring me some panadol tomorrow?
Ming: Oh – okay. That’s a lot of jobs and you haven’t given me much warning.
Me: It’s called initiative, Ming.
Ming: No, no, no – you know I hate that word!
Me: Well guess what – I hate the word stress!

The hardest thing about getting any sort of sick when you are caring for a loved one with a proper disease (Anthony) and another one who has just had a second lot of spinal surgery (Ming) and all the other people who you care for, is the feeling of utter helplessness that you can’t help because you are sick too. For me it is, hopefully, just a temporary sick but it may go on and on (pompholyx tends to do that).

Apart from the spasmodic asthma attacks that began four years ago, when I was still working at the university, Ming was still at school, and Anthony’s health was beginning to deteriorate, this is the worst diseasy thing that has happened to me. I’m a bit scared I guess because I’m the carer – I can’t get sick! I am needed!

To those bloggers and friends and relatives who know this feeling, I salute you for your courage and honesty in talking so openly about these things. My empathy has grown a thousand-fold because of this pompholyx thing.

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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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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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