jmgoyder

wings and things

Rage

It has been several weeks since a nasty skin cancer developed on Anthony’s forehead, right next to his left eye. He has had these before, many times – squamous cell carcinomas. Mostly our doctor burns them off with that nitrogen thingy, but a few years ago Anthony was referred to a specialist and put in hospital to have some of them surgically removed. The surgery went well but his meds. somehow got lost so he was off his face hallucinating. A second operation was scheduled but this time I kept his meds in my handbag just in case.

For several weeks now I have been trying to get some clarity from his doctor, the surgeon etc. because this skin cancer is painful and looks like a little red hole drilling into his head and if I hug Ants he winces with pain. The surgeon’s wife tells me on the phone that he is on the waiting list and I will be given an hour’s notice. Ming became angry enough to ring them back and beg for the surgeon to go see Ants in the nursing home before hospital but the answer was no.

I can’t lift Ants by myself anymore so I can’t drive him to the appointment especially if I only get an hour’s notice since we live a half hour away from the nursing lodge. I think I will get him ambulanced into hospital tomorrow and take it from there.

Rage

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Love story 100 – Do males always love themselves this much?

Prince (our only white peacock): I just love the smell of my feathers – glorious!

King: I know what you mean, Prince – I love the angles of my shadow on the lawn.

Okay, years ago – well before Ants and I got married and had Ming and well before Ants got so sick – I asked him to explain his arrogant, strutting self-posturing.

He said (and I will never forget it), “Jules, men have to love themselves just in case nobody else does.”

Oh!

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Love story 99 – Pip

After the kidney infection episode and I was out of hospital, Anthony rang to say he would come and get me and bring me down to the farm to convalesce. I was surprised at this gesture as (a) in those days Ants would not leave the farm; (b) he wasn’t that great with generous gestures; and (c) he never bothered to see me when I was actually in hospital.

“Do you have to come to Perth anyway?” I asked on the phone.

“Well,  yes, to pick up Pip.”

“What do you mean?” (Pip was my own little mini-dachshund who Ants was looking after while I worked and undertook my postgraduate studies in Perth.)

“I’ve just had her mated, Jules – it’s no big deal.”

“Okay, but she is my dog, Ants – you could have asked me!”

The next day he came up to my flat to pick me up and, expecting to see Pip in his arms, I became a bit alarmed. Ants sat down at my little table and sipped the coffee I gave him and then told me she was dead – that she had tried to get out of the pen she was in and strangled herself. He wiped at his eyes as I sobbed, then took my hand in his and said, repeatedly, ‘I’m so sorry, Jules.”

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A stitch in time

Years ago, when I was working as a nurse in Perth, I was walking home one day and I suddenly felt a peculiar pain underneath my left lower rib. It was like a stitch or a slight cramp. It persisted off and on over the next few days until one morning it woke me up. As I got dressed I realized I was shivering even though it was summer and the pain was definitely more than a stitch. I didn’t have a car in those days so I decided to walk to the closest doctor’s surgery which was about two kilometres away. By the time I got there I was actually holding my side in agony, sweating profusely and feeling faint. The doctor immediately sent me to hospital in a taxi and after many hours of waiting and tests I was diagnosed with a severe kidney infection and ended up on a drip and very sick for over a week. After I was better I decided never to forget that kind of strange stitch-like pain, subtle to begin with, but soon agonizing.

Two days ago, during my little blog-breather, I was cleaning out my office when I felt the same stitch-like pain and that night I tossed and turned with the shivers – a fever. This time I didn’t wait and saw the doctor immediately who took samples and, long story short, yes I have a kidney infection again. Thankfully it isn’t as progressed as last time so I am on a course of antibiotics and that should be that.

I might be very good at looking after people who are sick but I am very bad at actually being sick. When I twisted my ankle the other week anyone would have thought I’d had my foot amputated; when the rooster clawed me and gave me a skin infection I limped around for so many days that Ming told me to stop my nonsense; when I then got asthma for a week I allowed google to scare the hell out of me; and now this.

The three things that scare me most about being sick are these: firstly, I am easily scared; secondly, I am needed; and thirdly, my family and friends will say, “you aren’t looking after yourself – you’re run down” which will make me feel guilty for being sick.

How come, when I am no longer working and no longer having to physically look after Anthony, I am run down?  Of course there are logical reasons like not eating healthily enough, not exercising, not getting enough sleep etc. etc. – we all know the drill – but now that I am beginning to admit-to-admit I am a little tired, I think it is simply that I am so sad. No, I don’t mean depressed, although of course that is a factor, I just mean plain old sad – sad about Anthony and his Parkinson’s disease and not being home with us anymore; sad that he is sad; sad that Ming is angry.

Chronic illness sufferers are so much more heroic than ‘come-and-go’ illness wimps like me. I salute them for their courage, determination and wit – and have met many via blogging. They don’t make a fuss about a stitch; they don’t let the sad stuff get the better of them; they soldier on, unfalteringly beautiful, and Anthony is one of these people.

Oh – google has just become my friend again – it says, “It is usually young women who develop kidney infections.” Ah, it’s good when a stitch makes you young again!

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Little luxuries

1. A hot bubble bath.

2. A food processor that will make meals all by itself and not cut anybody’s fingers off.

3. A clothes dryer that dries everything in an emergency.

4. A vaccum cleaner that works properly.

5. A lawnmower that works properly.

6. A Spring that stops raining.

7. A bonfire that keeps burning instead of fizzling out.

8. A son who doesn’t answer back.

9. A husband who smiles.

10. A different me.

I don’t have any of these things but I live in hope!

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Counselling

There used to be a real stigma attached to the idea of counselling – i.e. that you needed someone to help you sort your emotions out etc. This is no longer the case with most schools employing professional counsellors (psychologists or social workers) and many people seeing counsellors on a regular basis. Ming and I have sought this kind of help a few times, especially during the months when Anthony was still home but deteriorating fast, Ming was getting angrier by the day and I was getting beyond sad.

As I’m sure is obvious from various posts in this blog, I have not adjusted nearly so well as Ming has to Anthony’s moving into a nursing lodge. I guess I had always envisioned that one day Ants and I would both be old people (him 90 and me nearly 70), sitting in rocking chairs on our front veranda, and Ming would be gone, exploring the world in one way or another. I had no way of knowing that instead it would be Anthony gone away and Ming and me here together.

We are not coping well with what Ming continuously refers to as ‘our relationship problems’. The fact that he even cares about our relationship astounds me; after all, he is 18! He gets very angry with me, then gets the guilts and that whole vicious cycle repeats itself. So we have decided to seek the help of a counsellor again. Ming wants a man this time (our previous psychologist was a woman and she was great but it seems Ming is now at the age when he needs a man-to-man talk with someone). The trouble is the guy who has agreed to help us is on holidays for a couple of weeks. In the meantime, I emailed Ming’s primary school headmaster because he has always understood and liked Ming and he agreed to come over tomorrow afternoon to talk to Ming about his angst.

As I was driving Ming into music school this morning (well, he was driving to practise before his driving test in a couple of weeks), we were having our usual bitsy verbal wrangles. So I told him that Henry (name disguised to protect the innocent) was coming over to counsel him tomorrow, and Ming thought is was a great idea – phew!

This was our conversation:

Me: I told him you had angst issues.

Ming: What’s angst?

Me: Aggro.

Ming: Yeah, but that’s only because of you.

Me: What – the fact that my presence irritates you all the time?

Ming: No, not ALL the time, Mum.

You gotta laugh!

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Scary stuff

When I went in to see Anthony this afternoon at the nursing lodge, he was lucid, affectionate and understanding when I had to go pick up Ming from music school to get him home in time for milking.

When I rang Anthony half an hour ago, he thought there was a riot happening and that everyone had left and he was alone. These evening hallucininatory imaginings are now pretty regular, so I then rang the staff to alert them, then rang Anthony back and there was already a nurse in the room. I tried to reassure him, but he kept saying strange mumbling things and asking me to help. I said I would be in tomorrow morning and he latched onto that.

He was scared.

I am scared.

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Love story 98 – I don’t remember

Lately, I’ve been telling Ming stories about how Anthony used to be. The trouble is, even though to some extent I remember and am so glad I have written the various love story posts into this blog, I can’t remember Anthony in a way that reconjures him. It’s hard to explain but it’s like a shadow crosses my memories so that I see fleeting images of him: running around the paddocks rounding up cattle; milking the cows; having drinks with his mother on the veranda; wolfing his breakfast; winking at me …. I have hundreds of these image-memories but they are all very still – like the photographs never taken.

Every single time I see Ants, either in the nursing lodge, or when I get him home, I get a shock – every time. So not only is my memory faulty, my perception of now is too; I can’t seem to adjust to the reality of how incapacitated Anthony is.

Ming said the other day that he wished he had known Anthony when he was young. Me too.

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Love story 97 – Dealing with death

Anthony has had miniature dachshunds as pets for as long as I can remember. When Ming was born, we’d just lost Doc, a male, to old age, but we still had Inky, a female puppy.

Inky was, at first, alarmed by baby Ming – this strange,new creature in the family. But her alarm soon became intrigue, especially once Ming started crawling, then toddling, then babbling and I’ll never forget the shock on Inky’s face when Ming uttered his first word – “INKY!”

They were inseparable, making their infant-to-child transitions simultaneously. When I took Ming to ‘occasional care’, we would take Inky with us in the car, then Ming would carry her into the centre, much to all the other little toddlers’ delight. It was around this time that Ming – if asked if he had any brother and sisters – would state, proudly, “I jus have Inky – she’s my liddle sista.”

Inky was four and Ming still three, when she began to lose her rather manic liveliness. She started to get really drowsy, and her tail didn’t wag frantically anymore. Ming became upset when she wouldn’t race him, or fetch the tennis ball, or make the shrill, ecstatic noise she’d always made when he cuddled her.

Then, one evening, Inky wouldn’t even get up for her food, and we knew something was badly wrong. We rushed her to the vet and as Ming, Anthony and I watched, he said, “She has a heart condition and is dehydrated. There is nothing I can do; I’ll have to put her to sleep.”

With tears in my eyes, I crouched down and explained to Ming that Inky was in pain and that the best thing to do would be to put her to sleep. He nodded, solemnly as the vet injected Inky.

As we took her little corpse – in a box the vet had given us – out to the car, Ming patted my hand. He’d noticed my emotion and said, “Doan worry, Mummy. Inky’s jus sleeping. Gimmee her to hold.”

That was when I realized that he didn’t understand that Inky was dead. So I got into the back seat with Ming and, as we pulled away, I tried to explain, in my clumsy adult way, that the little dog Ming was holding was not going to wake up.

The car seemed to get very cold. Then Ming’s silence broke and he started to sob and so did I, holding tightly to his little hand. Anthony said gentle words to us while he drove us home.

As we reached the farm gate, Ming had stopped crying and said, in a quiet, solemn little voice, “Hands up all the people what are sad.”

We all raised our hands.

Then, when we all got out of the car, Anthony wrapped us all in one of his gigantic hugs.

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Avoidance

I have been avoiding talking about, thinking about and even visiting Anthony for the last couple of days because I am so sick of the sadness of his Parkinson’s Disease, sick of my own guilt at placing him in the nursing lodge and, yes, sick of the increasingly blank expression in his eyes.

Today, I organized the wheelchair taxi to get Anthony from the nursing lodge to a nearby restaurant because my mother and her old friend wanted to have lunch with us. My mother’s friend has recently moved into a nursing lodge in Perth (200 kms from here) so it was wonderful to see him and he kindly paid for our lunch. It all worked out fine with the only drawback being Anthony’s blankness, because he is now beginning to find it difficult to form thoughts into words, so the conversation tends to happen around him rather than with him. Contriving topics of conversation that will trigger memories and get Anthony talking is not my idea of fun.

Ah, you think, how selfish of me. Yes, I agree but while I am being so honest here I may as well also admit that I was absolutely dreading today’s lunch. What if the taxi didn’t arrive on time? What if Anthony didn’t feel well enough for the lunch? What if he’d somehow missed his medications? What if I couldn’t find the wheelchair entrance after the taxi arrived? What if he had to go to the loo and couldn’t walk? What if the taxi didn’t come to get him on time? What if he couldn’t manage his food? What if he got unhappy with me? What if he got nasty about going back to the nursing lodge?

Okay, luckily most of those things didn’t happen, but some did and, towards the end of our lunch, I caught myself looking at my watch, just wanting it to be over so I could come home and be free again. Yes, I wanted to be free of Anthony – there I’ve said it.

The weird thing is that after following the taxi back to the nursing lodge and wheeling Ants into his room, he suddenly became unblanked and, using his walker thing (you know those ones with wheels), he almost ran me back to the entrance with a nurse accompanying us. At the doorway, as I said goodbye to my beautiful husband who barely resembles who he used to be, he suddenly said to the nurse, “She’s avoiding me, you know.”

The nurse said, “C’mon, Tony, what do  you think it’s like for her? Stop making it so hard for her to leave.” (I wanted to hug that nurse!) But Anthony just kissed me reluctantly and turned his back on me as I exited, then said to this huggable nurse, “She wants her freedom.”

Yes.

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