jmgoyder

wings and things

Nov 18

Love story 118 – Sunbaking

by jmgoyder

Anthony’s skin cancer operation has suddenly been fast-tracked to tomorrow (Monday) – yikes, I only got the phonecall Friday. Okay, for those who don’t know this, Anthony has a very nasty skin cancer right next to his left eye and it is painful, so it has to be cut out. This has to be done in hospital so he needs to be there by 9am and I still haven’t decided whether to get the wheelchair taxi and meet him there or take him myself. His mobility at this time of the morning isn’t good.

Over the years, Anthony has had multiple skin cancers either burned off (with that nitrogen spray stuff) or surgically removed. Many of them have been squamous cell carcinomas, not melanomas, which is good. He was born into an era where hats were worn haphazardly and sunscreen probably hadn’t been invented and, when I met him, he was in the habit of sunbaking after lunch to get a tan. Inna (his mother) would often ask me where he was and I would tell her he was lying out near the fig trees and she would tut-tut and say that was fine as long as I wasn’t sunbaking with him – ha! At the time, that would have been a dream come true for me but I am glad I didn’t as he has now had over 50 skin cancers burned off and several requiring surgical removal.

So tomorrow will be an adventure of sorts because of how his PD, and now PDD, is likely to affect the ordeal. The surgeon is not going to do the procedure with a general anaesthetic (too risky) so Ants will be given a local anaesthetic and sedation. The operation will take about an hour or so. I have to admit that I am absolutely dreading this because of what happened last time.

Last time, the skin cancer was on top of his skull so the pain he suffered afterwards was excruciating and his medications for PD were temporarily lost and he missed a dose or two: result, he went totally loopy and had to be on 24/7 watch. It was a nightmare just after the operation so I raced home to get his spare meds., raced back and sneaked him some and he was okayish for awhile but (this was a few years ago when he was more mobile) he kept trying to wander out of the hospital – argh!

Tomorrow I will have to arm myself with secret drugs – ha – and a double dose of patience with both Ants and the system. It is only going to be a day procedure this time and I’m not sure if this is a good idea or a bad idea – maybe he should stay one night in the hospital? I wish I knew. I have decided to take my box of paperwork in as I will be there for hours.

This is probably my overactive imagination but sometimes I can feel Inna’s smile of approval, almost as if she is kind of watching over her son, and me, and Ming. This is a good feeling.

Family Friendship LOVE STORY

40 Comments »
Nov 11

Sundown syndrome

by jmgoyder

The other day a friend mentioned this so I googled it and am stunned because it explains what has begun to happen to Anthony every evening! Other terms used are ‘sundowning’, ‘sundowner’s syndrome’ and ‘sundowners syndrome’. Here is a link to one ‘take’ on this very real problem.

http://www.caring.com/articles/sundown-syndrome

Sundown syndrome is an offshoot of dementia and usually happens as the sun goes down and light turns to dark, but it can also happen at sunrise. Some theories suggest that it has something to do with the 24 hour ‘brain clock’ that responds to changes in light. Other than this it seems to be a bit of a mystery. A person with dementia may be calm during the day but become agitated in the evening, sometimes quite dramatically.

Symptoms can include things like agitation, restlessness, aggressiveness, increased confusion, hallucinations, paranoia and a whole gamut of ‘out-of-character’ behaviours. This is the best explanation I have found yet to explain the last few weeks of Anthony’s increasing bewilderment and misery in the evenings.

Sunset, for Anthony and many others, is not beautiful.

Family Friendship LOVE STORY

24 Comments »
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 »
Nov 9

Love story 115 – Sedation

by jmgoyder

Before I became a lecturer in literature and writing, I worked as a nurse in nursing homes and I used to be disturbed by the amount of sedation given to people with dementia. Now I understand much more clearly why.

This evening the nursing lodge staff rang me so that I could speak to Anthony and he was, once again, agitated, confused and mumbling conspiracy theories about what ‘they’ were doing to him. Again, he didn’t know where he was so I tried to reassure him, spoke to the evening nurse (I now call her ’24/7′) who was by his side, then to him again, then got off the phone stunned at the rapidity of his descent into dementia.

Earlier in the day I had rung the morning nurse to discuss the evening confusion problem and she said they were going to get a urine sample because Anthony might have a urinary tract infection. I had wondered this myself as I already knew that these kinds of infections can send someone who already has a brain disease into crazyland.

But tonight, after the jumbled conversation with Ants, I waited until I had calmed down a bit, then  I rang ’24/7′ back to have a private chat and she told me the urine test came back clear.

This means that Anthony does not have a urinary tract infection.

This means that we are now facing what I already knew was coming (but Anthony didn’t), the dementia of Stage 5 Parkinson’s Disease. It has been lurking there for some time but now its jaws are wide, its fangs are sharp and it is out to get him.

’24/7′ told me he had refused his dinner, had become belligerent and was difficult to calm down.

We need sedation.

Family Friendship LOVE STORY

23 Comments »
Nov 9

What next!

by jmgoyder

Two phonecalls tonight with Anthony.

I rang him at 7.30pm to say goodnight then he got a nurse to ring me at 8.30pm. During both conversations, Ants was convinced that I was having an affair and that everyone was telling him that. I thought he was joking to begin with, then realized he was serious. He said, “Jules, I have the shakes.” I kept saying not to be so ridiculous and, luckily, the nurse was there in the background of the second phonecall to reassure him.

This evening confusion thing is escalating and now we have a brand new ingredient: jealousy.

Anthony: It’s that man they told me about.

Me: What man? Who told you? What are you talking about?

Anthony: He kissed you.

Me: Nobody kissed me, Ants, please Ants, are you kidding around?

Anthony: Okay, Jules, sorry, I was just pulling your leg.

Me: Well, it’s not funny – don’t joke with me Ants like that – please!

Anthony: So where are you now? Is he there?

Me: Who? Ming?

Anthony: No, that guy we were just … that guy, that man … Jules I love you.

And it went on like this for awhile until the nurse intervened, reassured me on the phone and gave it back to me to say goodnight to Ants.

It is going to be okay. I know all about dementia so I am prepared but this jealousy is so new it flabbergasts me.

Family LOVE STORY

34 Comments »
Oct 26

Disorientation dilemmas

by jmgoyder

Over the last couple of weeks I have become more and more reluctant to take Anthony out of the nursing lodge to either bring him home or elsewhere, even with the use of the wheelchair taxi, because of how often these ‘outings’ sort of backfire.

One of the nurses said to me the other day that when he gets back to the nursing lodge he is often moodily unhappy and it has been suggested to me by friends, family and staff, that taking Ants out of an environment he is still adjusting to might be detrimental rather than delightful. Now, in principle, I already knew this because I spent many years working as a nurse, then undertaking a PhD about dementia and finally having a book published. Wiithin that book, I devoted a chapter to this very issue, so I do know.

Back then I was writing about a patient who always wanted desperately to go home so one day, I took him out for a walk up the street and, instead of being delighted to get away from the nursing home, he became even more disorientated and I had to bring him back much sooner than I expected. It was a humbling experience because I had thought, at the time, that I would cheer him up but that little venture out exacerbated his confusion and he was more agitated than usual for a couple of days. Yes, I felt bad but I also learned something.

That was years ago – well before Anthony and I were married. I told him the story of this man and Ants was proud of me for undertaking the thesis and he said I was too kind and I should have just left the situation alone. He said, “Jules, he needs to settle.” Ants felt so sorry for that man.

Now he is that man.

Family My published writing

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