jmgoyder

wings and things

I am pregnant!

I bet that shocked you! Of course I am not pregnant; after all I am 53 and Anthony is in a nursing lodge. But I keep having dreams about being pregnant and they are so real that I wake up in the morning and am surprised that I am not pregnant.

Last night, everything in the dream was initially as it is in real life: Ants was in the nursing lodge and Ming was 18. Then it got really bizarre because in the dream I had only just given birth to a beautiful little girl, to find myself pregnant again. I was bewildered at how this could be possible and my friends were looking at me askance as if I were some sort of alien, or else had dabbled in an affair. I woke up whilst still pregnant and trying to figure out how and why this had happened.

I don’t find these dreams disturbing at all; I find them rather interesting adventures. Also it is easy to see why I might be having these dreams: (a) the birds are madly mating, and loudly, because it is Spring; (b) Anthony has begun to think I have found another man; (c) Ming is giving me the whoops; and (d) Tapper, the duck, is still sitting on her eggs hoping they will hatch. As for deeper, psychological interpretations, well that is probably a minefield that I would rather avoid at the moment.

Perhaps these dreams are a signal that something really great is about to be born. That would be good!

[Or perhaps it’s just that we are inundated with eggs, the peafowl keep pooping on the chookhouse, or I need to go to the gym? Who knows!]

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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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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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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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Weekend off

I’ve decided to take a blog break for the weekend, so I won’t be reading, writing or commenting etc. If I don’t reply to a comment for a couple of days it doesn’t mean I don’t appreciate it – many thanks..

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Awry

I don’t think I have ever used the word ‘awry’ before so it looks a bit odd when I write it. When things go awry = when things go skewy, veer crookedly off the planned plan, transform pleasant into unpleasant. Awry is my new word for what is happening, unhappening and happening again.

This morning one of Anthony’s nieces and her husband travelled an hour and a half to come and see him. Initially, the plan was that I would order us all lunch at the nursing lodge and eat there, then I realized that there was a restaurant on the beach around a block away so I organized for Ants to be ready in a wheelchair and we would all walk down. So J and D arrived at the farm, we caught up with each other and had a coffee, then drove in to the nursing lodge.

On arrival at the nursing lodge, Ants was in a wheelchair ready but looking angry. Even though I had told him yesterday that D and J were coming and he said he’d like to go to the restaurant, he’d forgotten and was quite cross with me for not telling him. Nevertheless we set off with D pushing the wheelchair. The restaurant was pretty ordinary, nothing flash, and Ants immediately said to me in his new mumbly voice that it was pretty rough but we all ended up having a nice meal and yet Ants remained angry and kept having little conversations with me that I could hardly decipher except that his anger was potent.

I got a bit of a shock because Ants is never angry or rude or ungracious or cantankerous but today he was all of those things. On the walk back up a rather long hill to the nursing lodge he refused to be wheeled in the wheelchair and insisted on walking – very slowly – holding my hand. He somehow got to the top of the road panting a little and D, J and I finally convinced him to get back into the wheelchair. It has been months since I have seen him walk this far and it was obvious that he was trying to prove he could do it in front of J and D. Of course I realized this at the time and I would have had all the patience in the world if he hadn’t been so aggro.

We got him back to his room and transferred him from the wheelchair to his armchair, had a bit of a chat but it just wasn’t working; he was still angry and when I sort of told him off in a flippant way he said it wasn’t J and D, it was me he was annoyed with. Oh great, I thought. So I explained we had to go but then he insisted on walking us all out. I tried to stop him because he was exhausted, but, as usual, I relented, fetched the walker and we all slowly made our way out. We all tried to stop him coming out of the front door but he wouldn’t stop. J and D said their goodbyes and walked up to the parking lot to wait for me. Once they had walked away, I burst into tears and said to Anthony, “Why? Why are you so angry with me? I organized this lunch for you with D and J who we haven’t seen for ages and you were just horrible, especially to me. Why?”

This anger thing is new. Oh great – what fun. Yesterday was total confusion and today anger. What next?

Yes, yes, I know it’s the Parkinson’s Disease Dementia crawling around in his brain – I know that and I am not complaining because I understand and empathize and his homesickness is like a constant haunting taunt for him and me, and I love him so much but he really hurt me today and maybe taking Anthony out, or home, is a bad idea – unsettling, disorientating, confusing. Maybe I will have to give up.

Awry.

69 Comments »

Love story 107 – Canny confusion

This afternoon, when I visited Anthony in the nursing lodge, he was confused in some ways and canny in other ways.

“You said you were coming earlier.” CANNY because I was a bit late.

“There was a wedding here this morning – awful people.” CONFUSED

“So who owns Bythorne now?” CONFUSED AND CANNY

“Is he trying to take it again?”CANNY because he remembers some of the horrible family stuff that happened when we got married.

“So where am I now?” CONFUSED

I haven’t seen Anthony this confused before. He even thought his beautiful older brothers, now deceased, were helping Ming and me out on the farm. But the thing that struck me most was his anxiety about another relative who had been such a bully that we had to banish him. That was the best thing we ever did, but the fact that Anthony is still worried about this and worried about me, and that his memories are so lucid about a situation that is long gone, disturbs me and breaks my heart.

As Anthony’s PDD (Parkinson’s Disease Dementia) progresses, will his memories of the bully dominate or will his memories of our blissful little family dominate? I don’t want him to be afraid and confused like this. I don’t want him to remember horrible stuff.

In my new Godzilla mode, I want to smash those horrible memories to pieces; they are now beginning to splinter into Anthony’s mind in such a disturbing way. Why else would he have asked the same questions again and again?

“So who owns Bythorne now?”

“Is he trying to take it again?”

My answers:

“You own Bythorne.”

“Not a chance in hell!”

Yes, I am a little angry.

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Control

I latched onto a couple of quotes from two articles that I found on Monday and, when I read them to Ming yesterday, he was blown away. The first comes from this source: http://www.psychologytoday.com/blog/healthy-connections/201007/help-my-controlling-behavior-is-ruining-relationships

“How does a person become controlling? It is basically a method of coping with the anxiety they feel beginning very early in life.  Some had parents who couldn’t quite fulfill their role as strong caregivers and seemed to be weak or incapable.

A child in this situation, as early as age 3, may begin to prop up their parents and become a little adult very early on.  If the stress continues, fear increases and the use of attempts to control what they can, becomes compulsive and unconscious. It is more likely to happen with children who are helpers, and/or leaders by nature, often first born boys or girls feel proud of themselves for helping and it is encouraged or reinforced by parents and other influential adults. They may also have a tendency toward anxiety, worry and perfectionism which will only make it worse.”

The second quote comes from this source: http://www.psychologytoday.com/blog/emotional-freedom/201010/how-deal-control-freak

“Controllers are often perfectionists. They may feel, ‘If you want something done right, you have to do it yourself.’ …. Controllers are also controlling with themselves. They may fanatically count carbs, become clean freaks or workaholics. Conventional psychiatry classifies extreme cases as Obsessive Compulsive Disorder–people are rigidly preoccupied with details, rules, lists, and dominating others at the expense of flexibility and openness.

QUIZ: AM I IN A RELATIONSHIP WITH A CONTROLLER? (from Emotional Freedom)

  • Does this person keep claiming to know what’s best for you?
  • Do you typically have to do things his way?
  • Is he or she so domineering you feel suffocated?
  • Do you feel like you’re held prisoner to this person’s rigid sense of order?
  • Is this relationship no fun because it lacks spontaneity?

If you answer “yes” to 1-2 questions, it’s likely you’re dealing with a controller. Responding “yes” to 3 or more questions suggests that a controller is violating our emotional freedom.”

I wasn’t sure what to expect when I read these quoted excerpts to Ming so it was rather lovely when he listened without angst and it was very interesting to see his jaw drop in recognition of himself and me. I guess you could call it an epiphany.

It was during our first session with the counsellor last week that she suggested  we might have control issues, so it was the word ‘control’ that stuck in my head and is why, after things went haywire on Sunday, I googled ‘control issues’ and found the above two articles. What would we do without google – ha!

“So I’m a control freak,” Ming said with a certain amount of relief and a tinge of pride.

“Yes.”

“And it’s because I couldn’t control Dad’s sickness and your misery, and my back and all the shit?”

“Possibly.”

“So what do we do now?” Ming asked.

“Well, we’ve already taken the first step, kid.”

“What do you mean?”

“I am the one in control now so you can just freak off!”

His pealing laughter filled the house and my heart had a lovely little nap.

Sometimes I just want to go back in time!

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