wings and things

Imagined conversation 27

Me: You know these conversations that we’re having?

Anthony: Yes, I do.

Me: They’re rather wonderful aren’t they.

Anthony: They certainly help to pass the time of day.

Me: Master of the understatement aren’t you.

Anthony: I try.

Me: What I like best is that you don’t have dementia anymore.

Anthony: What are you talking about? I never had dementia.

Me: Well, okay, you must have forgotten.

Anthony: You talk a lot of rubbish sometimes.

Me: That’s what I used to say to you – kindly.

Anthony: What’s your point?

Me: It almost feels like we are time travelling backwards and a bit forwards but mostly backwards. In a good way. I’m remembering all sorts of things – conversations and your wit.

Anthony: I like to have my wits turned on.

Me: You never really lost that did you.

Anthony: I never really lost anything actually.

Me: Sometimes, when you said really crazy things, I used to think maybe you were pulling my leg.

Anthony: I was.

Me: No you weren’t.

Anthony: Have it your way.

Me: No need to get huffy.

Anthony: I’m not but I don’t like you saying I had dementia. Horrible word.

Me: But you did have it. I just never told you.

Anthony: Well maybe a little bit.

Me: No, a lot.

Anthony: Bull.

Me: I thought heavenly creatures like you basked in the truth.

Anthony: I’d rather do a dare.

Me: Okay, I dare you to acknowledge that you had dementia.

Anthony: Entrapped. Okay, okay, you got me.

Me: I thought it was fantastic that you didn’t know.

Anthony: A blessing in disguise?

Me: Exactly.

Anthony: It must have been hard on you.

Me: I guess so, to begin with, but I got used to it. I got used to you with dementia. It didn’t scare me at all but it probably would have scared you if you knew.

Anthony: It was bloody beautiful of you not to tell me.

Me: Remember how you would get confused and I would reassure you that it was just the Parkinson’s disease?

Anthony: Yes.

Me: Well that was instead of telling you it was dementia.

Anthony: I heard you tell someone the other day that we made friends with dementia. Clever.

Me: That’s what it felt like. It was sort of whimsical and we even had fun with it.

Anthony: With what?

Me: With the dementia. In retrospect.

Anthony: If you say so.

Me: Come on. Admit it.

Anthony: Okay. Yes, you’re right. I’m so sorry, Jules. It must have been ghastly.

Me: No, it wasn’t. It was still you.

Anthony: It’s good what we have isn’t it.

Me: It’s the best thing on earth.

Anthony: And in heaven.

Me: Bloody hell! Okay, Amen.


Anthony: Amen.






Sometimes I feel a bit guilty for being so totally relaxed and lazy in Anthony’s nursing home room. Okay so I did a bunch of paperwork there today but, for most of the afternoon, I just put my feet up on his knees and watched West Wing while he slumbered on and off.

I think this restfulness is good for both of us; he wakes up from a nap and almost always says, “Jules?” For me, it is good to be there because there must be many, many other times that he asks for me but I’ve gone home.

Most of the staff now know the white lie I want perpetuated – that ‘Julie will be back soon’ – and this seems to comfort Anthony (and me of course!)

This afternoon, as Anthony slumbered, I quietly packed up my things and put a pillow on the chair next to his, where I usually sit. He suddenly woke up and said:

Anthony: Where are you going, Jules?
Me: Just to get some groceries, Ants. I won’t be long.
Anthony: I am crazy.
Me: No, you are NOT crazy!
Anthony: I’m crazy about you.
Me: Oh … well, so you should be!


I no longer think being restful is a lazy thing; it beats the hell out of anxiety, and it beats the hell into acceptance.


Wheelchair walking

Apparently, despite the fact that we are in Winter here down under in the southwest of Western Australia, the weekend will be sunny.

So I have decided to do something new and different and take Ants for a wheelchair walk tomorrow. Not only is this a way of getting him into the sun, it’s a way of me getting some exercise!

Also, I am contemplating using my blog to write more regularly again about how a marriage survives the dementia that comes with advanced Parkinson’s disease. Instead of blathering on about this and that, I will focus my blog-writing into a bit of a PDD theme. 

Since volunteering at the nursing home, I have learned so much and I seem to be in a perpetual state of quiet joy, playing dominoes and cards with various residents, doing the daily walk with dementia residents, rushing in and out of Anthony’s room for quick hugs.

The wheelchair walking will be a test of my physical strength (I am very unfit, physically) and, as the nursing home is close to the beach, and hilly, it will also be a test of preventing Anthony from toppling out of the wheelchair when we are going downhill!


“I have accepted my Parkinson’s.”

Today I met one of the Anglican priests from my mother’s church (well, it’s my church too but I hardly ever go), because I had asked her to pray for me and my pompholyx and for Ants too. She is a beautiful person about my age who came out to the farm a few days after Ming’s car accident and prayed for us and for the whole family, and her name is Sarah.

We met in the parking lot of the nursing home at 1.30pm which was, coincidentally, the same time my mother was planning to meet me to visit Ants. I would have gone into the nursing home with Sarah but unfortunately, after showing her my hands, I burst into tears so had to ring my ma and say Sarah and I would do the praying thing outside and come into the nursing home presently.

So Sarah and I found a seat outside and she prayed and anointed my hands and blessed me while my nose dribbled as I stopped crying. Neither of us had a tissue so I had to wipe my nose on my shirt before we joined my ma and Ants.

They were sitting outside in a little garden area and, after the introductions and greetings, not knowing how much time Sarah had, I got straight to the point.

Me: “Ants, remember how Sister R. used to come over and anoint you with her holy oil?” (Sister R. is a Catholic nun who has been our friend for decades and, despite Anthony not being the least bit religiously inclined, he used to love this).

Ants: “Yes.”

Me: “Well Sarah can do that now.”

Sarah: “Do you want me to, Anthony?”

Anthony: “Mmmm.”

Me: “Yes.”

So Sarah prayed for Ants and anointed him and then we all sat back and had a conversation.

We talked a lot about life, the accident, our kids (Sarah has a daughter nearly the same age as Ming), my mother’s unfortunate collision with a glass door the other day, and my hands. Then Sarah asked Anthony various questions – about his childhood, his siblings, Ming and so on – that elicited answers. I admired her skill at drawing him out because his conversational skills are now very hesitant. Sarah was also very good at waiting silently for his response – fantastic!

Then, in answer to a question about something entirely different, Ants suddenly said this: “I have accepted my Parkinson’s and I still have the power to swear at people I don’t like.”

Oh how much I love this man!

Thank you, Anthony.
Thank you, Mother.
Thank you, Sarah.
Thank you, God (but only if you heal my hands and foot).

On the other hand, maybe I will have to accept my Pompholyx, just as Anthony has accepted his Parkinson’s disease.


Anthony’s acceptance

pea 181pea 188

One of the most difficult things about Anthony moving into the nursing lodge has been accepting this dramatic change.

Ming (now 19) was the first to accept this change willingly, whereas it took me nearly a year and mine was an unwilling acceptance laced with grief and guilt.

Anthony’s own acceptance has taken longer but yesterday it just happened and I am so relieved. This is how:

I booked the wheelchair taxi to pick Ants up from the nursing lodge at 2pm, then I rang his nephew who lives around the corner, and left a message that Ants would be home for a few hours.

Then, at 2.30pm, the nephew rang to say Ants was at their place! Apparently Anthony had convinced the taxi driver that our address was wrong and directed him to go to the nephew’s!

By the time the rather flustered taxi driver arrived here (around 2.45pm) I was in such fits of laughter that I could hardly speak as he got Ants out of the taxi. I hugged Ants, still spluttering with hilarity, so much so that Ming took over wheeling Ants to the front veranda while I paid the taxi driver who was now laughing too.

Okay, frivolity aside, the bemused taxi driver left, Ming went to milk the cows and Ants and I shared a beer and some snacks I had painstakingly prepared (chips). Here is our conversation:

Ants: It’s good to be home.
Me: So why did you go to the nephew’s?
Ants: I got mixed up.
Me: Yeah, you have a bit of dementia now.
Ants: I thought so. Am I staying the night?
Me: No!
Ants: Why?
Me: Because, Ants, you are too sick, I can’t lift you, and you need nursing care. How many times do we have to have this discussion? You have to accept it Ants – please!
Ants: You’re right.
Me: What?
Ants: You’re right.
Me: Okay, so the wheelchair taxi is coming to take you back in a few hours. Are you okay with that?
Ants: Yes, Jules (winking).

We then shared another beer, laughed again about the taxi mishap (well, I laughed and Ants looked at me as if I were crazy), then he began to droop badly and agreed to get the taxi earlier.


PS. I’m off on my bike to tackle the road now!