jmgoyder

wings and things

Nov 9

Are you asleep yet?

by jmgoyder

Are you asleep yet, my beautiful husband?

Midnight approaches me with dark, unfamiliar claws, so I go outside to find some moonlight but it is pitch black out there and, when I can’t find the moon, I race back inside frightened.

The dogs are barking at a moonless sky but they will soon settle.

Are you asleep yet, my beautiful husband?

You said the other day that you just wanted to sleep wth me but you have forgotten that we have not slept in the same bed since the evening when you could no longer reach the height of the bed and I wasn’t strong enough to lift you into it, and we had to put you into the smaller, lower bed in what we always called the spare room.

I know.

I know you have forgotten those years of tortured, sleepless nights for both of us -, me in the big bedroom, you in the spare room but calling me, calling me, knocking on the wall with your walking stick until, finally I began to sleep in the other small, low bed in the spare room, so that I could help you during those moonful and moonless nights – to pee, to turn over, to be warmer, to be cooler, to get your knees inside the covers, to sleep….

Your dreams were terrifying and you would yell out in your sleepless sleep and I would lie in my bed next to yours hoping it would stop.

Is that what is happening now? Are you still hallucinating about the girl with the bleeding eye, the mob who are chainsawing all of your palm trees to death, the calves on top of the television, the phantoms in the dairy?

The peacocks are crying, crying, crying and their sound is a haunting lullaby.

Are you asleep yet, my beautiful husband?

Please say yes. All you have to do is whisper it and I will hear you, I will hear you.

Animal Family

36 Comments »
Oct 24

Love story 109 – Cold

by jmgoyder

I find it almost impossible not to worry about Anthony, especially in the evenings. I ring and speak to him every evening and he is often confused. Tonight he said he was still in town, that he was really cold, then asked me when was I coming to pick him up. I jollied him out of it by saying that the nurses would put him to bed soon and I reminded him to ask for an extra blanket. I managed to reassure him.

I could hear the grin in his voice when I said, “Okay, schnookums, see you tomorrow”, and he said, “Goodnight baby, I love you.” He was unhappy when I rang but happier when we finished the call. Phew!

A few minutes later I began to worry about him being cold, about whether the nurses putting him to bed would be gentle, about his nightmares and even about how tomorrow would pan out before I got in to town to see him. Usually I don’t let myself worry like this. Usually I make myself believe that he is okay because, as far as his physical care is concerned, he is in very good hands and the nursing lodge is superb. But I worry about him being miserable and I feel so impotent at this time of the evening.

The cold thing is yet another symptom of how the Parkinson’s disease has affected his ability to interpret things like temperature.  He feels the cold terribly and has done for a few years now, even if it is hot. For example, he used to say his feet were freezing and I would feel them and they would be warm as toast. Conversely, he would sometimes say his feet were burning hot and I would feel them and they would be cool. It never seemed to match with the actual temperature and it became a constant night-time job when he was still home. It was always either a toilet or a temperature issue that caused him to call ‘Jules, Jules, Jules!’ until I got up and helped him out.

So that’s why I worry now. Does he call out for me in the middle of the night at the nursing lodge? Does anyone hear him? He isn’t good with finding or ringing his bell, or using the television remote or even dialling a phone number. One of the nurses says that he sometimes yells out, “You, hey you!” because he can’t remember anybody’s name.

I don’t usually let myself get worried in the night because it is too unbearable to wonder if he is okay. He should be asleep by now so there is a certain amount of comfort in that and he apparently sleeps very well now, so that is good. I don’t usually let myself miss him as much as I do tonight but sometimes I have to let the reality of what is strangely akin to a separation or a divorce to seep into my psyche and I almost stop breathing from grief.

He will never read this because his cognitive abilities are faltering, so all I can do is to say here what I say to him over and over every day: “I love you, Anthony.”

And please, God, don’t let him be cold.

Family LOVE STORY

41 Comments »
Oct 22

Being a mother

by jmgoyder

Until five years ago, when Anthony’s health began to deteriorate dramatically, I think I was a pretty good mother to Ming. I kicked the football with him, played games with him, listened to his young teenage philosophies, rescued him from a school he hated and attempted home-schooling, took him to a psychologist when he became depressed, watched Black Books and The IT Crowd with Ming and Ants so we could all laugh together. But at the same time, things got much worse in terms of Anthony’s health and Ming and I began to share the ‘night shift’ of helping Ants to the loo, sometimes 3-4 times per night. I only asked Ming to do this once a week but it still took its toll on him emotionally. For me it took its toll physically and I ended up in hospital for a week with a severe asthma flu caused, the drs said, from exhaustion and sleep deprivation. It was at this point that my job at the university began to curl away from my grasp because, as soon as I was well again, I had to become a fulltime carer for Ants and the rest is history.

Tonight, Ming and I had another horrible row and we talked around in circles until I finally hit the nail on the head by asking him if his anger and frustration might be because I had stopped being a mother. He hesitated before saying to me that it had all been Dad, Dad, Dad, for years.

Oh the heartache of realizing that this beautiful son of mine/ours stopped being a child at around 14 because I unwittingly stopped being his mother and, instead, kept asking for his help with Anthony. Of course he was never neglected or unfed or abandoned. Of course he was adored, appreciated and cared for, but my preoccupation with Anthony’s deteriorating health was all-consuming and, yes, Ming is right – it was all Dad, Dad, Dad, until tonight. From now on it is going to be Ming, Ming, Ming.

Family Friendship

63 Comments »
Oct 9

Love story 104 – My beautiful husband

by jmgoyder

I finally got hold of Anthony on the phone this afternoon, and again this evening, and he was fine that Ming and I didn’t visit today. I told him about the counselling session and how Ming’s rage was against his illness, not him and he understood.

It is 32 years since I fell in love with him and nearly 20 since we got married and produced the beautiful brat. It has definitely been an interesting relationship which all three of us recognize, and the heartbreaking stuff is relatively recent. No – that isn’t quite accurate but at the moment I can’t talk about that stuff.

Anthony was always the absolute life of the party, the loudest laugher, a friend to everyone who came to visit. As a teenager, I was half appalled and half in awe of his amazing, charismatic presence. His ability to embrace friends and relatives in his big muscly arms. I miss those days so much and Ming loves to hear about an Anthony he never knew.

My beautiful, patient, resilient, suffering husband. Missing him is like being smashed in the face with my own clenched sobs over and over and over again.

Family LOVE STORY

39 Comments »
Aug 28

Love story 89 – I miss him

by jmgoyder

The trouble is I miss him the way he was, not the way he is now. It’s okay, I tell him this to his face and he understands because he misses himself too. My Anthony – just a couple of years ago.

LOVE STORY

45 Comments »
Mar 23

Anchorage

by jmgoyder

Husband and I have been married nearly 20 years – our 19th anniversary is coming up soon but we both always forget about it and my mum inevitably reminds us with a phonecall! Anyway, for most of those years of marriage, he has been an anchor for my flightiness, so I find it a little strange now to be his anchor, when I don’t feel anchored myself.

He is home now. It was supposed to be for one night but yesterday afternoon, despite my intentions to keep this ‘visit’ upbeat, he and I both became emotional and I rang the nursing lodge to say he would be staying home an extra night. His sigh of relief made the difficulty of this extra night worth it, but, because, like the first night, it was a difficult night of getting up and down, we have both realized that the nursing lodge was a good decision.

As usual, we were very honest with each other and Son’s occasional interjections were bitingly honest: “Dad, Mum and I can’t look after you as well as they do in the nursing lodge – can’t you see that?” He added a few adolescent expletives to emphasize his opinion which we forgave him because, after all, he is still trapped in his back splint and can’t help me tend to Husband.

The guilt associated with having to ‘place’ the love of your life into care, despite that person’s agreement to do so, is something difficult to describe. So many friends have expressed to me how terrible this felt for them in terms of their parents, and their empathy and commiserations are much appreciated. However, what many people forget is that Husband is not my parent – he is my husband. It even took awhile for the nursing staff at the lodge to realize this because he is 23 years older than I am, so it was assumed that I was his doting daughter! This kind of mistaken identity thing has happened many times over the years and is a source of much hilarity – well, it used to be!

Five weeks ago, while Son was in intensive care, I took this photo from my hotel balcony in Perth. I was actually trying to get a picture of the elusive swans!

Family Friendship

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