jmgoyder

wings and things

Paranoia

King: Julie hasn’t been as attentive to us as usual. Have you noticed?
Prince: Yes I have noticed!

Frosta: Yes, I’ve noticed it too, guys, and I’m a bit hurt too, but from a female perspective, I understand that she is simply going through a blue wren phase.
Prince: What’s a blue wren?
King: Those stupid little birds that flit around our heads all day.

Parkinson’s disease, in its final stages, can lead to confusion, depression, hallucinations, delusions, moodiness, dementia, and paranoia. Ironically, some Parkinson’s medications can also have these kinds of side effects which is why it is such a difficult disease to treat. Until recently, it was Anthony’s physical debilitation that was the primary concern. Yes, hallucinations were a big problem but that was eventually improved by some changes in medication.

So the nursing lodge decision was made on the basis of his physical disabilities – immobility and incontinence (and other factors). But lately, there have been some signs of psychological problems. His confusion in the evenings has become a constant and his depression too, and  last week I blogged about his uncharacteristic anger with me. Today, when Ming and I visited, he was different again. He had a strange, suspicious expression in eyes (eyes which are so difficult to read now) and he began a mumbled diatribe about the nurse who had showered him this morning, saying that she had kicked his foot and hurt him. He even used a few insulting expletives so I left Ming with him out in the sunshine and went in to talk to the head nurse.

This is only the second time I have raised an issue. The first was last week when I told her that his anger with me was a new thing, and today, without going into exactly what he had said, I mentioned that he seemed to have something against the nurse who showered him this morning. I admitted that I didn’t know if he was delusional or if she had actually been a bit ungentle with him and emphasized that his complaining was, like this new anger, uncharacteristic. She said she would look into things tactfully and we both agreed that it may be a new symptom of his PDD. I said I would see his doctor asap to see if his meds. could be altered (for the millionth time) to address this new out-of-character behaviour.

She said that he was occasionally a bit rude and nasty to staff, especially if their ethnicity didn’t match his and I was a bit shocked and reassured her that this, too, was completely out of character. She patted me on the back and Ming and I came home a little stunned by this rather rapid change in Anthony’s personality. The other thing that has been happening lately is that he has begun accusing me of having a boyfriend (which, of course, I don’t!) and previously he was never the jealous type.

I hope we can do something about this because it is very worrying. I mean if he is nasty to the staff they are hardly going to love him are they. So this is a real dilemma in terms of his care.

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Love story 109 – Cold

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.

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Our blue wrens!

As you can see from the following pictures, I have discovered the secret to good photography. You will have to read below to find out how I accomplished this.

The secret to good photography is to get someone else to do it. These are courtesy of Elen Wood. Thank you Elen!

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Love story 108 – Ming’s tail

From the ages of about two to four, Ming wore a tail. At first it was a skipping rope with one handle missing. I’d get him dressed and tuck one end into the back of his shorts and off he’d go. The rest of the rope would drag on the ground as he walked, ran and played. The tail became so much a part of Ming’s identity that if we couldn’t find it there would be a frantic search.

Anthony I got used to shouting desperately, from opposite ends of the house, “Have you seen Ming’s tail?” This became our morning routine!

During this period, even though he didn’t always wear it at home, there was absolutely no way Ming would leave the house without his tail attached. “Where’s my tail?” he would wail. Once, when we couldn’t find it, and then I remembered it was soaking in the laundry sink, I had to ring the pre-school teacher to say he’d be late because his tail wasn’t dry yet. This happened a few times so that even she began to see this as a perfectly normal excuse for being late. She told me once that she’d had to speak to the whole class about not touching Ming’s tail after it had been pulled out once too often and he’d dissolved into furious tears.

Inevitably, the skipping rope split and we had to find another tail, before the trauma of not having one left long-term psychological damage. Not to Ming – to me! I just couldn’t imagine him without his tail.

Ming was surprisingly mature about the disintegration of his old tail after I said that, of course, we’d get him a new one. “I’m sad but I’m okay, Mummy,” he said stoically. “I’m gwowing up, so I jus’ need a black furry one now,” he reassured me.

This happened on a Saturday, so I left Ming home with Anthony (well Ming wouldn’t come to town tail-less anyway). I searched the toyshops all morning in vain. Each time I asked, “Do you stock tails?” I’d get a bewildered response. I could have bought another skipping rope or any sort of rope, but Ming had graduated to black and furry and I respected that.

I rang Anthony who told me that Ming had been weird all day – not himself at all, quite moody, in fact. “He says he doesn’t feel good without his tail,” Ants said, laughing quietly.

We made the quick decision to give him a black woollen tie of Anthony’s that he had only worn once before anyway. “You’ll have to run out to the car when I get home so he thinks I found one in town,” I said. And that’s what we did. When I got home, Anthony and Ming raced to the car but Anthony won and secretly tucked the tie into my bag while we both told Ming to close his eyes and open his hands.

I put the tie into Ming’s hot little hands and he opened his eyes. He stared at it for what seemed like ages before he looked up at me, tucked the narrow end into the back of his pants solemnly and said, with serious joy, “It’s sooo wicked; look, Andony. Isn’t Mummy awfulsome!”

What a relief, and I took all the credit even though it should have gone to Anthony.

I wish Ming remembered these days.

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Dancing

Guinnea trying out a new move

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Queenie

Queenie is our oldest peahen because I purchased her and King as adults. All of the other peafowl came as littlies. Queenie and I have a rather special relationship although we do disagree on some issues. She is a rather radical feminist whereas I tend to waver. She has successfully negotiated a relationship with her husband, King, whereby he only visits when she says yes. King understands because he can see how hard Queenie is working on training the younger peahens. King’s method of training the young peacocks is to play tag around the house.

I think the reason that Queenie and I get on so well is that we are both contemplative. I love her!

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Simplicity

I watched two of Ming’s favourite television shows with him tonight, we ate pizza, and we laughed together.

What a wonderfully simple way to reconcile our differences and rebond. I haven’t watched television for months and now I am addicted to two shows  – take a guess which ones!

Due to our circumstances, I think the three of us – Ants, Ming and me – have made our love for each other too complicated, too intense, too anxious.

We need to lighten up and get back to the simplicity of watching television together.

Okay, I will tell you what the first show is: Home and Away. I am not giving away what the second show is/was.

Television is quite relaxing isn’t it!

Simplicity rocks!

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Who let the dogs out?

Remember this song?  http://www.youtube.com/watch?v=He82NBjJqf8&noredirect=1

For some time now we have had a dogs versus birds dilemma and this has been a source of contention between Ming and me. I have tended to lock the dogs in their yard and let the birds free range and Ming has wanted this arrangement reversed, so we have now come to a compromise. The dogs get to run free all morning, then get put back into their yard, then the poultry get to free range all afternoon until we put them away, then the dogs get another run. So far this is working very well.

The reason we can’t let them all frolic together is because the dogs want to kill everything. Blaze is a miniature dachschund and Jack is an Irish terrier so, despite our attempts to train them not to kill (using electric collar things briefly which I didn’t like, and a dog trainer) both breeds have been bred to hunt and kill.

Luckily the guinnea fowl and peafowl can fly up and away from dog danger, but none of the poultry can – not even Godfrey – so now we have a new system and everyone seems very happy – the gang, the dogs and Ming and me.

They look so innocent don’t they!

Don’t be fooled by their sweet demeanours; Ming let them out a bit early the other afternoon, before the roosters were roosting, and they killed Noname and Tina Turner almost instantaneously. Poor Ming tried to stop it but had to come and tell me. I cried my eyes out even though Tina and I had such a love/hate relationship. Noname was always a bit vulnerable and an easy target so I guess, for me, this was another lesson learned.

I’m not sure if getting accustomed to loss is a good or a bad thing.

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Being a mother

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.

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The first word

This word is often the first you utter as a toddler, but it is also the first word you become fearful of. It can be said to you, but you cannot say it back. You can’t say it back when you are a little child because you are a little child. You can’t say it back when you begin school because you are a schoolchild. You can’t say it back to your parents, your teachers, your coaches, your relatives, your friends … because you are not allowed to, no matter how many times it is said to you.  So you grow up and you get your first job and the situation repeats itself until you think that maybe you will never, ever be able to say your first word again. And then, 20, 30, 40 or 50 years into your life, you suddenly realize that it would be rather a handy word to use in some circumstances. So you try it out, very gently, and it works- it works! Then you try it out, less gently, and that works too and this surprises you because you have always been too fearful of using this first word. It is a beautiful word.

No.

Last week I said ‘no’ to Ming and today I said ‘no’ to Ants and, instead of being catapulted off the earth into nowhere, the three of us are still here and my two men have survived my ‘no’ with incredible ease. Of course there is more to this, as my previous blogposts imply, however it is the end result that really matters. I have learned to say no, Ming has learned that I am the boss and Anthony has begun to accept that he is in a nursing lodge permanently.

To celebrate my newfound love of the first word, I went out this afternoon and took some pictures (something I haven’t done for ages) of our beautiful white peacock who seems to think he is the first word bird!

I asked him if I could take just one more photo. He looked at me, turned around, flew high up into the wattle tree and cawed his answer down to me.

No.

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