wings and things

Keeping a record

Yesterday, after writing about Anthony not coming home, not asking to come home, and sometimes not remembering home and/or thinking he is home in his nursing home room, guess what?

He asked to come home. Not once, not twice, but repeatedly throughout the late morning and early afternoon. I was so taken aback because this hasn’t happened for ages – maybe months – so I was a bit unprepared. He kept trying to get up from his armchair (he needs help to do so) and, every half hour or so, repeated, “Come on Jules, let’s go.”

Me: It’s too cold and wet today, Ants. Let’s wait until the weather is better.

Anthony: I can light a fire in the fireplace.

Me: We don’t have any kindling.

Anthony: I’ll chop some in no time.

Me: It’s a bit late in the day, today. What about tomorrow morning?

Anthony: You’re unreasonable (removing my hand from his).

Me: What? Are you angry with me now?

Anthony: I haven’t been home for months. You keep stopping me!

After a couple of repeats of the same conversation, more or less, I decided to end it by promising to pick him up at 10.30am today and bring him home. Once that was established, he reached for my hand again and we continued to watch the television and eat olives.IMG_4740

When I got home last night I wondered if this sudden relapse into homesickness (which was a two-year nightmare for both of us which I blogged about on and off) might have been triggered by my conversation with Anthony’s nephew the other day about the possibility of bringing Ants home for the day. In retrospect, I should have steered this conversation away from the topic of ‘home’ (especially within Anthony’s earshot), but I had no way of anticipating that the idea would somehow stick and re-emerge days later.

Okay, so today was when I was supposed to fulfil my promise to Anthony that I would pick him up at 10.30am and bring him home. This may sound callous but I had no intention of doing this, simply because I can’t physically manage him by myself; he is too heavy.

So I made myself wait until after lunch to go in and see Anthony. And I have to say that it was with a mixture of dread and curiosity that I entered his room (with my bunch of camellias).

To my great relief, it was immediately apparent that Anthony had forgotten yesterday’s ‘home’ conversation. Instead:

Anthony: I didn’t expect to see you! You are good at geography.

Me: Look at these camellias!

Anthony: You’re so early! (It was 1pm)

Me: How do you like my boots? (I was wearing colourful boots)

Anthony: A bit way out.

Me: How Dare you!

Anthony: Sit down and shut up.

Me: Don’t you tell me to shut up!

Anthony: Can you put that that that trolley up in my room? (pointing to his walker) – also that woollen coil (pointing to the blanket on his knees).

Me (putting walker into his bathroom and closing door, readjusting his knee blanket): Okay – are you warm enough?

Anthony: Yes.

Me: Right, so can you stop fussing about the stupid blanket? It’s just a blanket!

Anthony: Yes, but look at the little fella (there is always either a child or a pet on Anthony’s lap from around 4pm).

Me: Yes, it’s a beautiful sight, beautiful.

Anthony (after a bit of a slumber): Jules?

Me: Yes? I’m here, Ants.

Anthony: Can you roll me up?

Me: Do you mean put your feet down? (I had his feet up in the armchair) How’s that?

Anthony: Bloody beautiful.

I always have pen and paper handy to scribble down my conversations with Anthony. Today and yesterday have been interesting in terms of his alertness (some days he sleeps and/or drowses during my visits).

It sometimes seems a bit odd to me that I am so fascinated by what is actually a tragic situation but Anthony has always inspired me in one way or another. At nearly 80, he has the most extraordinary resilience; he is positive without meaning to be; and he never complains except to say he is “a bit tired”.

Keeping a record of these conversations seems important somehow. For me, these transcribed tidbits of conversation make me feel as if I have a handle on our situation; that I can somehow control it into a manageable story that Anthony will appreciate.



I thought it was time I owned up to the fact that I am definitely not the wonderful, caring wife all of the time. The reason I am admitting this is because hopefully other care-givers will forgive themselves for the things I have to forgive myself for.

Anthony’s visits home are becoming more difficult and, consequently, less frequent. For example much of today was spent in the world of ablutions. With Parkinson’s disease, everything slows down and continence is a problem. Luckily, Ants (who looked after his own mother when this happened) doesn’t get the least bit embarrassed any more by the ‘accidents’ and I try my best not to be impatient and/or revolted.

On our second slow trip to the bathroom, I growled at him, “This better be the last bloody time, Ants!” And, to my shame, I also said, very impatiently, “Just walk, Ants – it’s only two more steps to the loo – WALK!” But, as soon as I raised my voice, he whispered, “Sorry, Jules” and my heart broke and I became gentle again.

After the toilet adventures, we were all back in the kitchen while I prepared lunch – another ordeal because Anthony isn’t good with cutlery now and makes a terrible mess which distresses him. Also, he can’t swallow properly so drools a lot (we always have a ‘dribble rag’ nearby) – I escaped to my little office at the back of the house. I should have been in the kitchen with Ming and Ants but, even after just a couple of hours, I wanted to escape.

Ming wanted to escape too and it was almost as if he and I were doing shifts with Ants. While I dealt with the ablutions, Ming escaped to his shed and, while he and Ants ate lunch, I escaped.

I am not sure what I am escaping from but the diminished presence of Anthony seems to suck the energy out of me. We sit together and there is NO conversation most of the time. He is silent, blank-faced and so bent over that his face nearly touches the table.

One of his favourite shows was on TV (Doc Martin), but he can no longer focus or understand what is going on, so, at one point, I turned the volume down so we could talk but by 2.30pm he was beginning to visibly wilt. At that point, Ming came back from his shed again and I whispered, “Can you take him back now? I can’t stand another minute of this nothingness.”

So Ming has just taken a reluctant Ants back to the nursing home and I am wishing that I had hugged him more than three times. His Parkinson’s is beginning to win over the medications now so he is increasingly immobile – it will be a wheelchair soon. Then he will be bedridden. Then he will have to be tube-fed.

Yes, life is a good thing and today had its good moments as well, of course, but to die sooooo slowly from this ghastly disease is a form of torture – not just physical, but emotional.

I love Anthony so much but I couldn’t wait for him to be gone again and I will have to forgive myself for that. Again and again. Guilt.


Tick tock

Anthony has a lot of antique clocks – a magnificent grandfather clock, three carriage clocks, two mantle clocks and one cuckoo clock. All of them chime on the hour and some on the half hour.

Well they used to.

Ever since Anthony went into the nursing home, all of the clocks have stopped. Mostly this is because Ants always did the clock winding and he never really taught Ming and me. Also, once Anthony wasn’t at home any longer, there didn’t seem any point any more, and letting all of the clocks stop seemed a natural reaction to his absence. My love of their chiming diminished in equal proportion to my increasing grief (if that makes sense, which it probably doesn’t!)

I finally got my act together a few months ago and invited a clock man over to have a look. He serviced all of the clocks, got them going again and showed us how to wind them without overwinding them and pronounced one of the carriage clocks as too far gone. Well, Ming and I lasted a week, so all of the clocks have once again stopped.

Oh the guilt. And the silence! If you are used to the constant chime of clocks, the silence is like a thrum of nothingness. I miss the noise of the clocks, the complaints of people staying with us who said, ‘how can you stand it?’ I miss all of those hundreds of Sundays when Anthony wound each clock with such joy until he forgot how to.

The other day, when I brought him home for the day, he tried again with his favourite clock.


It didn’t work.

Tock tick (no, that is not a typo).


Carer confessions

If you care for a loved one who has an illness, your good thoughts might sometimes be criss-crossed with bad thoughts like the following:

– I’m so sick of you and this situation!
– You aren’t who you were and I loathe the way you are now.
– Thanks for ruining my life!
– Please stop needing me!
– Thanks for giving me the guilts!
– Why can’t you just die instead of suffering like this?
– I hate loving you.

I told Anthony that sometimes I felt like this and he hugged me close and let me cry.


Anthony’s acceptance

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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!


Happiness guilt

I have always had a bit of a problem with “happiness guilt”. As a child, I had a keen awareness that while I had a loving family, enough food, and a house to live in, other children in other places didn’t. So I developed a kind of resistance to happiness because it made me feel so guilty when I knew other people – particularly children – might be unhappy.

When I posted about Ming’s new ute, I didn’t mention the episode of happiness guilt he experienced for nearly an hour after Anthony and I shocked him with his birthday present.

I took Ants back into the lodge for lunch and wondered why Ming was taking so long to come in and join us. Finally I went outside to find Ming in a severe state of happiness guilt.

Ming: But I don’t deserve it – I can’t believe this!
Me: It was Dad’s idea and I made it happen.
Ming: But how? We don’t have any money! I’m so worried!
Me: Dad had some savings – Ming, please stop worrying, it’s okay. This is giving Ants so much joy – it’s sort of vicarious.
Ming: But it’s 4WD!
Me: Dad’s idea.
Ming: And turbo! And diesel! With a steel tray! And it’s automatic!
Me: Dad wanted to get you the best.
Ming: No, I don’t deserve it!
Me: You do! Now get over it and come in and say all this to Ants!

In the end I had to get a couple of nurses to go out and convince Ming to be happy and not guilty! He finally came in, hugged and thanked Ants and things lightened up but it was only when Ming (still on L-plates) was driving us home that the happiness finally got the better of the guilt.