Me: Daaaarling!
Anthony: Jules!
Me: Why do you look so surprised?
Anthony: Well, I was going up the passageway and I saw her. It was extraordinary.
Me: Who did you see?
Anthony: You.
Rollercoaster 2
I will soon be facilitating a carer support group so I guess the last couple of weeks will help. The trauma of seeing Anthony unconscious, then the joy of seeing him okay again, over and over again, especially lately, has absolutely done my head in.
Today, we had a multitude of visitors and it was wonderful – especially when my great-nephew sat on Anthony’s knee! And yet yesterday, Ants was in bed, sleepy-headed and not particularly responsive to visitors.
It is hard to admit these things, but I would like to be honest about how I feel, in the hope that others will be able to relate and not feel guilty. It would not be possible for me to admit these feelings if I didn’t love Anthony so the following observations and questions are addressed to him despite the fact that I can’t speak to him about these things:
- Ants, we have never talked about your death or made funeral arrangements, so Ming and I have no idea what you want. We are seeing funeral directors next week with our various questions.
- You were like a dead person yesterday, but today you were back! I know you don’t know you are dying and I know you don’t even know you have dementia, but I also know that you know me/us.
- Every time, especially lately, that I think you are nearly dead, I get panicky and grief-stricken; then you come good again.
- Anthony, the other day, when I had my finger on your pulse, I did actually want you to die. I’m sorry, but you were unconscious anyway and I thought it would be easier.
- You are 80, Ants. I know you keep telling me you are 16, and asking where you mum is, and seeing baby Ming in every corner of your room, but then, all of a sudden, you are back in the here-and-now.
There must be a better way of caring for carers and I am very interested in helping in any way I can.
I want Anthony to live.
I want Anthony to die.
Day by day
Today, Anthony ate his vitamised food well, was able to speak a bit, and smiled at my mother, who has recently returned from a wedding in Melbourne. It was while she was away that he had the TIA (mini-stroke) that really freaked me out and catapulted me into making funeral arrangements – mainly because he’d had another of these two days prior.
Even before the nursing home, Ants had had these mini-strokes and twice I called the ambulance and he was hospitalised. Both of these experiences were dreadful because he became so disorientated and anxious but at the time I didn’t know what a TIA was.
Today I spoke to one of the many lovely nurses at the nursing home to check with her if I’d signed the ‘not for resuscitation’ form. That was a yes. But I also wanted to check that I had signed off on the end-of-life form, so we are going to discuss/check this tomorrow because I don’t want Anthony hospitalised, or given a feeding tube, or any interventions that might prolong suffering.
Anthony doesn’t appear to be suffering but his feeling intensely cold during the day, and hot during the night (and I remember this from when he was still home), may actually be physical pain? I don’t know because he rarely complains. And even if he wanted to say he is thirsty – and he is suddenly thirsty constantly – his ability to speak is too diminished to express anything coherent to the carers.
He was always a larger-than-life person – loud, boisterous, the life of the party, and Ming (Menzies Goyder) is such a clone of Anthony. I love this!
And now, this evening, as I reflect on today, I realise that Anthony is also a larger-than-death person. Yes, he will probably die in the next few months or weeks but he will live on in so many hearts because he is so loved, by so many – not just Ming and me.
Love and laughter
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.
Back to the birds!
I was going to write something poignant, but I am too fascinated by why these two pigeoney-dovey-looking birds keep rejecting my offerings. For ages they have been visiting two fence posts just outside my front window. So I left crumbs (which a clever crow immediately took), then I put nuts out on the top of those two particular fence posts.
During the night it rained so I guess the nuts are now a bit soggy. The two pigeon-dovey-looking birds seem almost to be afraid of my strange offering. I will have to be more subtle and I am not gifted with subtlety ha!
It is such a great relief to let go of the poignancy, to charge my camera’s battery again, to watch the birds from my front window – the most beautiful view – or just to sit on the front veranda watching the sky’s birds at near-dusk.
jmgoyder 