Anthony can’t find or utter the words any more and this is terribly frustrating for him, and for Ming and me. He was much more awake today than he has been for the last week, so I felt a bit silly to have thought/written that he might be on the brink of death. Last year I was terribly angry with a relative who suggested this and now it’s me thinking the same thing, almost a year later.
I am shocked at how, within the space of a week, Anthony has developed dysphagia to the extent that he has difficulty in swallowing even vitamised food, and can hardly speak any more. It is the latter that is most upsetting for me because of how much I have always enjoyed our conversations, no matter how bizarre.
If Anthony stops speaking altogether, I will have to become more creative in what I say to him. The blog will help, photos of the farm will help, Ming references will help, memories will help.
I know that Anthony’s incoherence will soon become a silence that I may not know how to read and this worries me.
Me: I love you, Ants.
Anthony: ….
Me: You’re supposed to say it back!
Anthony: I love you, Jules.
A few weeks ago, Anthony told me he had been running all morning.
Me: How far did you run?
Anthony: Eighteen miles.
Me: Well, it’s no wonder you’re so exhausted! You must have overdone it. You’re not a spring chicken any more, you know, Ants!
Anthony: Shut up (smiling)
Me: Well bravo anyway. Have a nap if you want. You deserve it. I could never run that far!
Anthony: No, you couldn’t.
I love these flights of fancy, these ‘fabulations’ and, even though I know they are a product of Anthony’s Parkinson’s disease dementia, they don’t differ so much from what we all experience sometimes. Often I will wake up in the morning with what I call ‘adventure dreams’ still hanging around in my psyche, waiting for the next chapter, or a conclusion.
For someone who can barely walk now, it’s beautiful to know that Anthony thinks he can still run.
Over the last few weeks I have been making a determined effort to get healthier (you know, the usual things: fitbit, green juice, no wheat, organic wine, aromatherapy) and …
… exercise. Not happening, despite the fitbit!
So yesterday I went to one of the many gyms in Bunbury and tomorrow I will begin one of those 3-day free trials. I met one of the managers (D) and she was lovely. The gym isn’t big and flashy and has an easy-going atmosphere. D asked what I most wanted out of the gym and I said, “No tummy and stronger arms; I don’t want to walk or cycle in here because I would rather do that outside.”
Anyway, I’m quite excited about tomorrow. I’ve had gym memberships before but not for years so I will have to re-learn how to use the equipment.
When I told Ants he said, “Well, you’ll be battling to compete with my fitness” patting his flat tummy. He then proceeded to tell me that he did 25 push-ups per day and that I should try it.
Me: I can’t even do one push-up!
Anthony: That’s why you have your problem.
Me: What problem?
Anthony: The tummy (pointing to mine before I put one of his pillows onto it).
Me: Are you calling me fat? How DARE you!
Anthony: Jules, you know I’m kidding; you are perfect.
This verbal exchange was enhanced throughout by Anthony’s fantastic smile. I’m just glad he won’t see me struggling with the weights etc. tomorrow. I will paint a much better picture when I see him, so that he will be as proud of me as I am of him.
Me: Ants, I admire you so much, so much – the way you keep on being well and fit despite the Parkinson’s! And you never get down like I do. You are amazing.
Anthony: I know.
Me: Oh. Well, anyway, I’ll start the gym thing tomorrow morning and come and see you straight after.
Anthony: I know [yawning]
Me: Sorry if I’m boring you!
Anthony: Off you go, then.
Me: What? Where?
Anthony: To that wildlife park…
I guess the health kick challenge is on!
When we first entered the nursing home world, Anthony had a pair of lovely R@M Williams boots, which he loved wearing, and some ugg boots for the winter. The former boots were almost impossible to get on and the ugg boots were impractical in the summer. So I was asked to get him some velcro slippers – the kind that can be undone at the front and back for easy fitting. So far he has now gone through three pairs of these and last week I found the final pair in a bag labelled “Unsafe”.
After talking to a couple of the occupational therapy staff, it was suggested that I get him running shoes that have more support in the heel area. This is because Anthony’s feet, especially his heels, were slipping inside the slippers and this was making it difficult for staff to get him up to transfer to the shower or to walk etc. His feet won’t do what he wants them to do and one of them in particular just keeps kind of folding in on itself.
So, after several days of looking for suitable shoes and bringing two pairs in (neither of which were suitable) I have decided that I will have to fork out the $189 for the homipeds. In the meantime he is in his ugg boots.
One of the carers and I tried to get my recent shoe purchase onto Anthony’s feet today and it was absolutely impossible, so tomorrow I will go and get those homipeds and hope for the best.
Me: Ants, I have some different shoes and they’re two sizes too big so I should be able to get them on.
ONE MINUTE LATER
Me: Just push your foot in!
TWO MINUTES LATER
ME: You’re not even trying, Ants!
Anthony: Yes I am.
Me: Argh – this is ridiculous. Here’s the shoe and here’s your foot and it’s a perfect match. OMG I am sweating! Okay, let’s try the other foot.
THREE MINUTES LATER
Anthony: You should have a bit of a rest, Jules.
Me: These shoes are definitely NOT going to work because if the nurses have to spend this long getting the stupid things on your stupid feet we’ll be blacklisted for shoe negligence.
Anthony: But my hands are okay, so don’t worry.
It is things like this that sometimes get me down.
I think if I had to choose between love and laughter in a relationship, I would choose laughter. Obviously, having both is ideal but love can be so heavy sometimes, whereas laughter is light.
Today, Anthony was in great form and when I arrived he was participating in a game of coits during “gentle gym”. I joined the game by his side and Kaye (pseudonym), one of the OTs, was running things and she is such a fun-loving compassionate person, she made Anthony feel good about himself despite his bad score! Many of the residents were, like Ants, wheelchair-bound, and couldn’t really throw the coits but it was still fun and there were a lot of laughs. I think I will make a point of going to these sessions regularly because it was obvious that Ants was thrilled I was there.
Later, in his room, once he was settled back into his armchair, we had the following conversation (he has been extremely vocal lately – just when I was getting used to his silence).
Ants: I haven’t seen you for awhile.
Me: What a lot of rubbish! I saw you the day before yesterday!
Ants: No, it was the day before the day before yesterday [accurate!]
Me: So are we heading for an argument?
Ants: No, but sometimes I think you have run off with another man.
Me: How ridiculous! Why would I do that when I adore you so much?
Ants: I’m not sure you do anymore.
Me: Okay now listen to me, you idiot. It’s not all about you. Sometimes I need a break and sometimes I need to do other stuff.
Ants: Like what?
Me: Laundry, housework, cooking, Ming.
Ants: So where will you be tonight?
Me: At home of course.
Ants: Where is that?
Me: Bythorne [the name of our farm]
Ants: Bythorne? [looking very surprised]
Me: Yes, silly!
The conversation meandered over the few hours I was there, but here is another excerpt in response to a cooking show on television:
Me: Look at that roast duck!
Ants: Beautiful.
Me: That guy has cooked it slowly for over three hours.
Ants: Too long.
Me: Yeah, but it looks perfect, Ants!
Ants: You have a point. When are you going to cook it?
Me: Actually, that’s a great idea but I need to get the Aga going first.
Ants: I lit it the other day but we need more kerosene.
Me: I am ordering some next week.
Ants: Isn’t the grass green [looking at the wall]
Me: Yes, it’s wonderful.
Ants: Do you want me to light the fireplace? [trying to get up – impossible]
Me: No, Ming’s already done it.
Ants: He’s a good son isn’t he.
Me: He’s a great son.
And, as I was leaving:
Me: I have to go now to get some groceries.
Ants: But every time I let you go, you don’t come back until the next day.
Me: But I do come back! I love you so much, Ants.
Ants: I don’t love you as much now.
Me: What? Why? How dare you! [tickling him]
Ants: Because you keep leaving me and I don’t know where Mum is.
Me: Argh! Ants, we are in a nursing home and you are in good hands. You have Parkinson’s disease and I have to go and get some groceries! Get with it! I’ll see you tomorrow.
Okay, so all of the above was love-driven but it was the hilarious laughter and smiles we both shared that made these poignant and bittersweet conversations absolutely wonderful. It was one of the best days Ants and I have had for ages.
The love hurts, but the laughter heals.
jmgoyder 