I have to break it to Ants that I can’t bring him home for the day any more because I can’t physically lift him. He is now requiring two nurses to assist him in every way. I will tell him tomorrrow; it is a hard thing to say and I am nearly beside myself with grief because he is my hero in so many ways – hence my resorting to sentimental music like the following….
‘Shit happens’
Okay, firstly, I didn’t say that; it’s a popular quote and is a perfect descriptor of how life can pan out, regardless of hopes, prayers and …. well, we all know. In fact, it is a fact of life and it doesn’t necessarily come with any warning on the packet.
‘Shit happens’ http://en.wikipedia.org/wiki/Shit_happens
I’m not a huge wikipedia fan but sometimes it is handy, as in the above definition/history of the quote.
‘Shit happens’ is an existential type of concept in the sense that, despite trying to be a good person and trying to make your own life work out in the hope that you can control its meanderings and tame the hardships into something manageable, you can’t always do that. I don’t think you can manage fate when it comes to bite you at the end of a life (Anthony).
It is possible, however, that you can manage fate at the beginning of a life (Ming). I don’t know.
Ming playing at the gig the other night.
Shit doesn’t always happen?
Note: Apologies for offensive language, if you were offended!
A wonderful realization
Well, it took a wordpress glitch to shake some sense into me. The notifications of blogs I’d subscribed to (even though I did that whole unsubscribe thing awhile back) weren’t coming through to my email account, so I got a bit worried and, yes, felt a little lonely not to get those emails.
Various comments suggested that other bloggers were experiencing glitches like this and several said they simply use the Reader to check up on their blogfriends. To cut a long story short, I went in and unsubscribed from every single blog in order to resubscribe when my particular glitch was solved.
But halfway through the unsubscribing process, I realized that blogging has become my way of avoiding things, avoiding some of my responsibilities, avoiding Anthony and the pain of what he is going through in this final phase of Parkinson’s disease.
So, from now on, and I’m sure none of you will be hurt by this because I have totally unsubscribed from everyone – I am simply going to write a daily blog, respond to comments and that’s it. I have to do this for awhile so that I can focus on Anthony and Ming, so for those bloggers who I am close to, with whom I have exchanged support, humour etc., please forgive me. I will catch up with your blogs as soon as I can and I am available by email anyway.
I have decided to stop using blogging as an avoidance strategy.
Hopefully this makes sense!
Funny incidents
FUNNY INCIDENT 1
Anthony and I just had a nostalgic talk on the phone about the Captain Stirling hotel (where he thought he was last night). He remembers vividly his delusional episode which I find rather remarkable. I remind him of our stay there when I was heavily pregnant.
Me: You took me to the cheapest hotel in Perth, with a room that didn’t even have a bathroom so I had get up and go to a communal bathroom a million times during the night because of being pregnant and needing to use the loo. Your were such a tightarse!
Anthony: I thought it was quite romantic.
Me: You really ARE deluded!
Anthony: Remember bumping into Ed in the bar? [distant relation around Anthony’s age]
Me: How could I forget that! Remember how we didn’t understand why the bar was so crowded with middle-aged women?
Anthony: And Ed told us is was ‘Grab a granny night’!
Me: It was appalling! So why did you think you were there last night?
Anthony: Because it looked exactly like the Captain Stirling.
Me: So you’re okay today?
Anthony: Yes, I’m not there today.
Me: Where – at the Captain Stirling?
Anthony: Yes, I’m back here.
Me: Okay, I’ll be in later – I love you.
Anthony: [mumbles incoherently – this is happening a lot now]
Me: I can’t hear you – what did you say?
Anthony: I love you.
Me: Well it’s about time you said that!
Anthony: I couldn’t remember the words.
You gotta laugh!
FUNNY INCIDENT 2:
Ming and I have the usual mother and son conflicts and after a particularly horrible argument, which Ming later insisted on analysing every nuance of until we were reconciled (rather exhausting), we had this conversation-
Ming: Mum, I don’t want to see any of my friends for awhile.
Me: Why? What’s wrong?
Ming: Nothing. It’s just that I want to work on repairing our relationship.
Me: You really are unique, kid!
Ming: I try.
We both laugh!
FUNNY INCIDENT 3
Adolescent peacock 1 [we have too many for me to name them!]: Is Julie watching?
Adolescent peacock 2: She’s trying to take pictures you idiot! Turn around.
White adolescent peacock: I think I’ll leave you guys to it.
Angelina: Those two peacocks are getting very cocky aren’t they, Malay.
Malay: Hey, watch your language!
Tina Turner: Don’t worry, New Kid, around here this is considered normal behaviour.
New Kid: How do they do that feather thing?
Tina Turner: I don’t know and I don’t care!
Phoenix 1: Their need to flaunt themselves deeply saddens me. It’s a sign of the times. I prefer to let my beauty speak for itself.
Adolescent peacock 2: I told you to turn around. Do you think Julie wants a picture of your bum?
Adolescent peacock 1: I can’t turn around because you’re in the way. I’ll try again tomorrow – I’m exhausted.
New Kid: I’m having a bit of trouble adjusting to this place, Malay.
Malay: Don’t worry, New Kid, I was born here and I’ll look after you.
Sometimes I get a bit freaked out
Tonight on the phone Anthony asked me when I would be coming to join him at the Captain Stirling for a beer.
The last time we were at this pub I was pregnant with Ming – 19 years ago.
Tomorrow, when I bring Ants home for the afternoon, I will ask him about this because who else can I ask? He is my confidante and likes me to talk to him about him – weird but good too, I think!
Antidepressants?
I have now spoken to two of Anthony’s doctors about the possibility of him going on antidepressants or some sort of medication to lift his spirits. The trouble is, of course, that when asked, “Are you depressed?” he immediately says no, without the slightest hesitation. Despite his inability to smile or laugh in the ‘normal’ way anymore, he still has the most amazing ability to remain relatively stable emotionally (it is me who zigzags constantly from one mood to another!) However, it is becoming more and more obvious that not being home is making him constantly sad, and longing for us – Ming and me – is making him even sadder. His head is always bowed right down now (an effect of Parkinson’s and his spinal condition) so that when he stands he is almost bent double and I have to kneel down to look him in the eyes.
When I thought about telling Anthony about my weird dream (see previous post), I anticipated he would laugh his head off because I keep forgetting he can’t laugh at all. Every time I see him I get a shock all over again at how deteriorated he is – and how quiet, sometimes sullen. So this week I am going to organize an appointment to get some happy pills – after all, what harm can it do now? I realize this post may elicit mixed opinions and that’s probably a good thing. I don’t know what else to do.
I’ve been wondering why I continue to love Godfrey the gander, despite the way he bites me all the time (even when I am giving him bread!) and I think it’s because his confidence, his boisterousness and his strut all remind me of Anthony when he could stand up straight.
Dreaming hallucinations
Until last night it has been difficult for me to imagine experiencing the kind of hallucinations which are part of Anthony’s Parkinson’s disease. He will often see people in empty chairs and even talk to them. Sometimes those people are us – Ming and me – but sometimes they are strangers, often children. Sometimes he sees animals in the house or in his room at the nursing lodge – dogs and calves mostly.
Over the last few years some of the hallucinations repeated themselves and were frightening – men chopping down his favourite tree, the girl with the bleeding eye, trespassers taking over the dairy – but most have been tolerable and sometimes even comforting. Now, for instance, Anthony often thinks Ming is in the room with us even if he isn’t.
If, on the phone, Anthony says something that indicates he is hallucinating – in the evenings, for instance, he now almost always thinks he is at some sort of party in a mansion somewhere – I either go along with it or suggest he might be hallucinating. I only do the latter if he seems distressed.
Last night I had a vivid dream that has given me an insight into what hallucinations feel like and it was very frightening. In the dream, Anthony, Ming and I were all home and we had a lot of visitors. Anthony wasn’t ill and he was out chopping wood for a fire. I was the one who was ill and all the visitors kept saying I should go back to bed, but I wanted to be up and about. I was standing in the kitchen just as Anthony came in the front door with a big bundle of wood in his arms, then I turned towards the back door and there was another Anthony, in different clothes, with a bucket of wood. I turned around, confused, to see that the first Anthony was still in the hallway, then turned around to see that the second Anthony was now entering the back door. I kept telling the visitors that there were two Anthonys and they thought I was joking around. Finally, one of the visitors believed me and was alarmed and kept reassuring me that there was only one Anthony, but I could still see two – one to my left and one to my right. Neither of the Anthonys spoke, so I didn’t know which one was real.
The dream went on to another scene where I was at the doctor’s and he was about to tell me what was wrong with me – then I woke up. I can still feel the fear I felt in the dream – that I was losing my mind. I hope Anthony doesn’t feel as frightened as I did in the dream. I’m going to tell him and see what he thinks. Knowing him, he will probably laugh his head off!
Good things 1
A pianist in our paddock (yes, I know I posted this photo previously but for some reason the comments went off automatically).
Last beautiful picture of Anthony with Doc (who died several weeks ago). Jack in the forefront, who I have re-named ‘Jumping Jack’ because he jumps like a kangaroo, will outlive all of us I think!
How to make a Harley Davidson motorbike cake ….
My good friend, the madcakelady herself, on the left, and me.
A son, sitting on the best surprise Christmas present ever! (Anthony is in the background).
Anthony’s pride and joy, the Aga – the hub of this house.
A scoliosis surgery success story.
Love.
Remorseless disease
This was yesterday….
Ming and I are in the nursing lodge visiting Anthony who is wearing his shark eyes – unblinking – and the lack of expression on his face (which is a Parkinson’s disease symptom) makes him look angry. He can’t swallow properly anymore, so he has a constant drooling problem (another Parkinson’s symptom). Then he wants to go to the loo and I try to get him up off the chair and don’t have the strength without Ming’s help. Then, once standing, Anthony freezes and can’t walk (another Parkinson’s symptom).
I try my old method of saying, “1,2,3” and stepping my own feet just ahead of his, but he doesn’t move. Ming and I half carry, half push him to the loo and then Ming says we should get a nurse, but Anthony says no, so Ming withdraws from the situation and I try to get Anthony into the bathroom but I can’t without kind of shoving him and pulling him and getting teary and angry. “Please, Anthony, it’s just a few steps – please walk!” I shout/whisper. In the background Ming yells, “Get a bloody nurse, Mum!”
I leave Anthony clinging to the toilet rail attempting to wee and go back into the room where Ming sits on Anthony’s bed, his face furious. “You are so weak – get a nurse!”
“He doesn’t want a nurse; he wants me,” I hiss, furiously. “And I am not weak, I am strong! Just go away.” My anger is undirected; I can’t decide who, or what, I am angry with most.
I go back to the bathroom, attend to Anthony and try, with great difficulty to bring him back into his room. It takes 10 minutes to get back to his chair and, when he is seated, he asks for his hanky for the dribble and I pick it up and give it to him. I flinch a little and Anthony says, “It’s just saliva; it won’t kill you.” By now his shark eyes have gone from angry to sad and I feel terrible for having snapped at him.
“When am I coming home to the farm?” he asks me and I say on the weekend.
“Am I staying the night?” he asks, and I begin to answer but Ming interjects with, “Dad, you can’t come home for the night – get it into your skull!”
We all sit for awhile in the room with Anthony sad, me guilty and Ming angry, and then we leave and I cry all the way home once again because of how much I may have hurt Anthony with my impatience. And I cry about my dread of the weekend, bringing him home.
Please answer the phone!
Every day, whether I visit Anthony in the nursing lodge or not (this is now every second day, and I bring him home twice a week for the day), I ring him. If I am not coming into town, I ring him an average of four times – morning, afternoon, early evening and bedtime.
The trouble is he has difficulty answering the phone and often can’t work out what button to press, and sometimes he accidentally locks it. So my method now is to dial his number and let it ring 4 times, hang up, and repeat this several times until he finally answers. This saves the phonebill from skyrocketting, it gives Anthony time to answer the phone, and it drives me insane.
Ming and I spent the morning with Ants today, recharged his phone and put it within reach. Ants said to ring as soon as I got home and I have now been trying to for nearly 3 hours. I know he is in his room, warm and comfortable and watching television, with the phone right next to him on a side-table. I also know he is sad because he will think I haven’t rung him when, in fact, I have tried a zillion times!
Argh!
jmgoyder 