Thanks to Jane for this link. It is so sweet and interesting!
A letter of thanks
I have decided to write a letter of thanks to the wonderful staff at Wattle Hill Lodge so that they know how much they are appreciated. This is a first draft!
A letter of thanks to all staff looking after Anthony
Thank you for being so kind and considerate, way beyond the call of duty.
Thank you for being so gentle with Anthony, for liking him, for talking to him and listening to him.
Thank you for tolerating my uncertainty and ignorance of various rules, like signing in and out, coming in when there was a gastric outbreak, forgetting to fill out the satisfaction survey.
Thank you for your friendly smiles and greetings when you are rushed off your feet.
Thank you for putting up with my phonecalls to you when I can’t get through on Anthony’s phone.
Thank you for not minding our son Ming’s loud cheekiness.
Thank you for telling me that some of Anthony’s clothes were a bit shabby, to bring him socks that had treads on them, to bring him long pants (which he has always hated, but is now okay with).
Thank you for not minding when I accidentally interrupted your lunch breaks, or handover, or couldn’t remember the code to get out of the door.
Thank you for accepting that I can’t sew so all of Anthony’s clothes are labelled with a texta.
Thank you for not telling me to get lost when I wanted to help you help him with the toilet.
Thank you for so quickly realising I was not his daughter.
Thank you for telling me how disappointed Anthony was when I altered arrangements to bring him home.
Thank you for adjusting his phone, ringing me on his phone, recharging his phone when it was flat.
Thank you for making him feel safe, secure and fine at night now.
Thank you for tolerating the various doctors’ alterations of medications.
Thank you for the fact that Anthony thinks/knows you are all wonderful.
Thank you for being so kind to me too.
Thank you for not noticing that underneath my smile, my heart is ripped apart and the floor of my life is covered in the blood of loss.
Thank you for telling me I shouldn’t be lifting Anthony on my own.
Thank you for telling me that you had also noticed he was becoming more confused.
Thank you for talking to me, chatting to me, making me feel normal – making us feel normal – in a comfortable, cup-of -tea way.
There are so many more thankyous to you guys. I used to be an enrolled nurse and I mostly worked in nursing homes or with multi-handicapped people, so I know what you are all having to do to help Ants as he deteriorates, and I salute you.
So, thank you from my heart – all of you. I haven’t mentioned names here because I don’t know everybody’s names yet but I will work on that.
‘The Happy Wife’
Today I met some friends for lunch at a place called The Happy Wife.
I have been there before and the name of this little restaurant is an interesting thing to discuss. It could be assumed, I suppose, that it means that a happy wife is one who is out to lunch rather than making lunch? I don’t know. Anyway, the place has taken off like a rocket ship and is very popular.
After lunch, I went to see Anthony and spent a couple of hours with him. He didn’t bring up the subject of coming home for the weekend, so I didn’t either, even though I was ready to say it is now impossible. He was more physically mobile but also a bit more confused (the hardest part of this confusion is he doesn’t think he’s seen me, or spoken to me for ages, so a whole lot of yesterdays have been vaccuumed into oblivion and I have to convince him otherwise).
He wants me to get our bentwood chairs fixed and even gave me someone’s name so I am going to do that and all of that made sense, but in the next breath he asked what had happened to all of our furniture, so our conversation was a mix of real and surreal. I asked if I could bring a couple of pictures in and a clock (the cuckoo clock I bought him for Christmas) and he said yes. A few weeks ago he wouldn’t agree to anything from home being brought in so I didn’t because I didn’t want to hurry the sensation of permanency for him and with good reason because today he said it again: “I didn’t think this was going to be permanent.”
I decided not to respond to that and instead said, “How come you are so good at grimacing these days but you can’t grin?” so we bantered a bit. Of course I didn’t tell him I had been out to lunch at The Happy Wife because it only hurts him to think I might be doing something unnecessary when I could be with him.
I was such a happy wife.
Note: Yes, yes, I need to get a scanner! On the other hand, a photo of a photo can make a handful of years look like aeons and that’s what it feels like sometimes. Look how happy we were.
Blogantics!
The notification of other people’s blog posts is still not working (I only know this because I am subscribed to my own so I usually get a notification when I write a post and this isn’t happening). Having unsubscribed from all blogs has given me a bit of much-needed perspective in terms of time management, so that’s good. I thought, for the time being, I would simply suss out latest posts from those people with whom there is a mutual support thing going on. This will keep me out of mischief!
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!
Two more culprits!
The following bloggers nominated me for awards without realizing that my way of accepting awards is to give them an award – yes, indeed, there are now two more lucky recipients of the Hot Potato Award for which there are no rules except that you either accept it and copy/paste it to your blog or not.
Riba, at No Holds Barred, has a way of writing that strokes the soul:
http://noholdsbarredribataylor.wordpress.com/
Magically Mad, at Not Quite Lost, has a way of writing that challenges the soul:
http://ocelotbound.wordpress.com/
Of course, they both do both of these things in their enlightening blogs.
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.
Female pheasants don’t grow on trees!
When I wrote my cynical post about platitudes and cliches the other day, I wasn’t actually thinking so much of my own situation with a terminally ill husband, but of other people whose lives seem to have been swallowed whole by such chronic illness that each day becomes an enormous challenge. Some of those people I have met via the blogosphere, but I also know other people personally who are in various stages of illness or grief, so I understand and empathize with how difficult it must be to tolerate the platitudes.
The comments I received on that post confirmed that many people find the platitudes and cliches intolerable, but it was also pointed out to me that cliches can be very useful when you don’t know what else to say, so perhaps the post was a little over-cynical. One off-the-record comment implied that for me to call a well-meaning platitude ‘crap’ was an ugly way of expressing things and that my cynicism didn’t fit with the flavour of the rest of my blog.
So I went back and edited the post to make it gentler, but I kept the original words in there too. At the end I should have added “and you will pick yourself up” but, for some reason, I didn’t because, after all, that is not always possible. But, having upset one person, it is possible I may have upset others for which I apologize.
I have also had to apologize to Phoenix 1 because I still haven’t been able to find him a wife!
Me: Female pheasants don’t grow on trees, Phoenix!
Phoenix 1: I think you have used a remnant of a cliche, Julie.
Me: Oh, crap!
jmgoyder 