jmgoyder

wings and things

Mar 14

Dementia and bewilderment

by jmgoyder

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.”

blogging Family Friendship Grief Happiness LOVE STORY Parkinson's disease

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Mar 13

The Land of Blah

by jmgoyder

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.

Animal Family Friendship Grief Happiness LOVE STORY Parkinson's disease Wings

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Mar 10

The peachicks have chosen a new bedtime tree

by jmgoyder

Queenie’s chicks have become incredibly assertive. They take the food out of her mouth, fly at her aggressively if she is in the wheat bowl, and now they even choose the bedtime tree. Last night they decided to move to another tree while poor Queenie waited in the original bedtime tree. These two peachicks are absolute brats!

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But Queenie doesn’t mind.

Animal Family Friendship Happiness LOVE STORY Wings

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Mar 7

My name is “MING!”

by jmgoyder

If we had had more than one child we probably would have become more accomplished at the name thing. Alas, Ming (as our only child) inherited a bunch of names that make him sound/seem like a bit of a superior-being-weirdo – poor kid!

His first name is Menzies (pronounced Mingus with a soft ‘g’ and soon shortened to ‘Ming’). This name was chosen by Anthony, whose uncle on his mother’s side, had a Scottish name in the midst of which was ‘Menzies’.

His second name is Brinsley, named after my father, and his father, and his father. Many of the children, my brother, Brin, included, and grandchildren, have ‘Brinsley’ inserted somewhere inside their names. My father, Brinsley, died suddenly, when my brothers and I were still teenagers.

Ming’s third name is Barr, named after Anthony’s father, so his whole name is Menzies Brinsley Barr Goyder. It sounds rather impressive doesn’t it (and pretentious!)

It is very hard to get the pronunciation of ‘Ming’ from ‘Menzies’ however Ming has no patience with anyone who calls him MENZIES!

We should have just called him ‘Schnooks’ or something simpler – argh!

Family Friendship Happiness LOVE STORY

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Mar 4

Go to bed!

by jmgoyder

They go to bed (in their yard) but then they come back out again, and they do it over an over again – argh! Ming was never this difficult when he was a baby – mmmm. The problem is that they hear my voice and assume I have bread or lettuce (which I don’t always have). Freckle, Misha and Michael Jackson seem to want to eat my feet off. Funny – yes, scary, yes! Okay, I am going out now to put them to bed and, if you never hear from me again, it will be due to a duck drama! Oh and now Baby Turkey is stuck on the wrong side of the fence – great!

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Animal blogging Family Friendship Happiness LOVE STORY Wings

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Mar 3

House of cards

by jmgoyder

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!

Animal Family Friendship Grief Happiness LOVE STORY Parkinson's disease Wings

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Feb 28

My favourite duckling!

by jmgoyder

Okay, so I wasn’t going to name the ducklings but I can’t help myself now because they are surviving so well AND chasing me everywhere. They somehow know that my voice means lettuce or bread and they pretty much attack me every time I step out the door.

‘Michael Jackson’ is the dancing duckling and, before today, I thought the twins were identical until I noticed that one had a a lot of freckles (‘Freckle’) and the other one had more of a mish-mash of colouring and personality and beauty, so I have called her ‘Misha’.

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I know I shouldn’t have favourites and of course I love Michael Jackson and Freckle and Misha equally but let’s just say that for this week I am quacking with Misha!

Misha is named after someone with a better name – and this is sent with a love quack to her!

Animal Family Friendship Happiness LOVE STORY Wings

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Feb 27

The advantages of having pompholyx

by jmgoyder

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!

Family Friendship Grief Happiness LOVE STORY Parkinson's disease

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Feb 26

When the carer gets sick

by jmgoyder

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.

blogging Family Friendship Parkinson's disease

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Feb 25

Daybreak, heartbreak and other breaks

by jmgoyder

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!

Animal blogging Family Friendship Grief Happiness LOVE STORY Parkinson's disease Wings

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