jmgoyder

wings and things

Hello!

I am interrupting my blog break with a post because of an incident that has shaken me.

Two days ago, Anthony’s brother, J, a couple of lovely nephews, and Ants’ oldest friend, all convened at the nursing home. I didn’t realise at first that this had been arranged by J.- a fantastic gesture except that he forgot to invite Ming and me.

Nevertheless, I was delighted, despite the fact that J’s instructions were to have Anthony outside. The carers couldn’t lift Ants out of his armchair and they were about to get the hoist when the two nephews managed to get him into the wheelchair. I decided then that I would have to go with the flow so I wheeled Ants outside.

He was cold, uncomfortable, un-talked to (but talked about rather wonderfully by the nephews and friend); I sat right next to him and shared some champagne with him until it became obvious that he needed to get back to his room.

I came home, still delighted. It hadn’t been a perfect afternoon but it was better than nothing and I was very grateful for the presence of P. the nephew who visits Ants every weekend. He is so loyal and kind; he is a gift to Ants, Ming and me because of his sincerity and his love for Anthony.

The next day, another nephew (one who regularly visits Ants despite living 200 kms away), rang me to ask what was going on. I didn’t understand the question so he said that J. had rung various family members to come for drinks at the nursing home to say goodbye. I told him that J. and a couple of people had turned up but I hadn’t known why.

Apparently J. had decided to tell all of the family (except Ming and me) that Anthony was at death’s door. When I rang and confronted him, he explained that he just wanted to say goodbye.

“Try saying hello,” I said.

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Last Christmas

Last Christmas was the first Christmas that Ming and I didn’t bring Anthony home and, instead, exchanged gifts and food in the nursing home, where my mother joined us after church. She reminded me the other day that I had promised crayfish cocktail last year but failed to deliver; I think I was probably disheartened and just brought cheese and crackers. I don’t remember a lot about last Christmas except that Anthony was nonplussed by gifts given to him by Ming and me, and generally confused about how to open them; I do remember Ming being hurt and annoyed, and my own hot tears much later at home. It was horrible.

I am determined not to let this kind of scenario play out again this Christmas; if we can’t bring Ants home for Christmas, we will bring it to him, and this time I will do it properly. I will buy six crayfish a couple of days before Christmas and clean/de-shell them on Christmas Eve. Then I will make Anthony’s mother’s cocktail sauce (a secret-ish recipe!).

The real buzz for me is that Ming has agreed to allow me to do the pillow-case/sack thing for the last time. This means I can fill his special Christmas pillow-case with gifts just like Ants and I used to do when he was a bit younger (like a couple of years ago ha!) So Ming and I will wake up on Christmas morning and he will get some surprises and, hopefully, so will I. Then we will meet my mother at the nursing home for crayfish lunch after which Meg and Ming will probably go their separate ways and I will stay with Ants.

Anthony’s prostate cancer + Parkinson’s disease prognoses (both of which were determined several years ago), indicated that he would be probably be dead by now. So my wonderful husband – who never complains, who is never depressed, who never forgets me, who mentions Ming every hour I am with him – has exceeded his ‘use-by’ date.

Maybe this will be our last Christmas with Anthony; maybe not. In the meantime I’ve decided to take a bit of a break from blogging until after Christmas. I am messaging blog friends individually but this will take some time. If anything profound occurs to me I will put it on FB ha.

One of the most exciting things about Christmas is the Christmas Eve dinner at Meg’s (my mother’s) and this year we amount to around 20! My mother does the whole turkey roast thing and I usually bring the ham. Ashtyn Paterson (my niece) does the organisation of Secret Santa stuff. She is a legend!

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From L to R: me, Meg, and my nieces, Ash and Sage.

Sometimes I feel like I shouldn’t be happy whilst Anthony is in this predicament; then I come to my senses and yesterday I even lingered at my brother’s place instead of rushing back to the nursing home. And the other week, I lingered in Perth to see my youngest brother, his wife and Special K and, despite the dramatic circumstances, I looked at this family and wanted them to adopt me.

In February next year, Anthony will turn 80. He is not in good health but he is in quietly good spirits. Will this be our last Christmas together?

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Peacock poop

I thought it was time for a light-hearted post so here goes.

Every morning I am woken up by a bang-crash sound from the back of the house. King Ken has never done this before but he is now attacking his reflection in the back veranda windows on a regular basis. He does this so ferociously that I’m a bit nervous he will actually break a window.

Here he is pretending innocence.

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Now, apart from the alarming regularity of this banging and crashing, King Ken’s obsession with his own reflection also means that there is more than the usual amount of peacock poop waiting for me every morning outside the back door. Obviously I have to wait for this to dry before I can sweep it away because my new straw broom (which I can’t find anyway) doesn’t take kindly to wet peacock poop.

I like to tell Anthony about these mini-adventures and show him photos, but his verbal responses are now becoming few and far between. Our friend, N, another resident in the high care section, is also becoming less vocal although she still possesses a wonderful ability to laugh loudly. N’s daughter and I have become friends via our mutual concern for each other and our two loved ones.

Yesterday Ants couldn’t get any words out at all, no matter how much he tried, so I began to “interpret” what he was trying to say by suggesting possible topics from recent conversations. I didn’t always get it right but, when I did, he would sigh with relief (or maybe resignation) and give me a small smile. He was very sleepy and silent but not sad; he is never sad and this amazes me! I have never known anyone to be this resilient and content and this is a gift to me now because he has always had a rather calmingly buoyant effect on me.

I love metaphors and I was thinking that King Ken’s bang/crash might represent what used to be Anthony’s very healthy ego (still intact). But maybe King’s antics represent me versus the brick wall of acceptance.

As for the peacock poop, or any poop for that matter, it is its own metaphor and I just need to find my straw broom!

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Disorientation

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When I entered Anthony’s room the other day, his lunch had just been delivered but he was staring past the meal into space. So I pulled my chair close to his and began to feed him, spoonful by spoonful. Despite the way Parkinson’s disease has affected his facial musculature, he is still able to eat – to chew and swallow – but at times he seems to forget how to actually feed himself. He will often pick up a knife and poke at the food but not know what to do with it. Staff are aware that: (a) he still has a good appetite; and (b) he sometimes needs to be fed. So that is reassuring.

I compare Anthony’s increasing confusion about sustenance to my own hopeless sense of direction. When I was in Perth last week, I got lost several times on my way to various destinations. As soon as I knew I was lost, I became anxious, then went blank. Of course these situations were short-lived; nevertheless, they were a bit frightening because I didn’t quite know where I was.

Anthony often doesn’t quite know where he is. His list of possibilities include the following:

1. His childhood home in a country town down south.
2. The boarding school he went to as a child.
3. The boarding school he went to as a teenager.
4. A country mansion not far from here.
5. An historic hotel owned by a neighbour.

A couple of hours after I fed Ants his meal the other day, afternoon tea was delivered at about the same time my mother arrived to visit. Anthony has a sipper cup now but often cannot figure out how to use it. I took the lid off and tried to get him to sip but it was as if he didn’t remember how to do that either and some of the liquid spilled onto the feeder/bib. “Can’t you even drink now?” I exclaimed in frustration as the lukewarm tea continued to dribble out of his mouth. My mother remonstrated and I pulled myself together immediately.

I don’t like this impatient side of myself but, luckily, it doesn’t happen very often and of course is easily fixed with an apologetic hug. But I am now noticing within myself a strange, new disorientation; I fluctuate daily between a sense of desperation to see Anthony and a horrible reluctance. This means that lately I haven’t been visiting as often, or for as many hours, as usual.

Most probably, this is just a new phase. After all, Anthony is often asleep for hours now, unaware that I am sitting next to him with my hand on his shoulder. I think our phase of watching television series together has exhausted itself and I need to get back to more productive ideas of how to be in his room for long stretches of time. Scanning photos from the many photo albums I have stored in Anthony’s room will be my first task.

This afternoon I wanted to show Ants the more recent photos of the flourishing vegetable garden. But Anthony was too drowsy and incoherent which made me feel very tired and sad and, yes, disoriented too. I wanted (briefly) to just give up, whatever that means.

But then my mother sent me a photo of me with my first great nephew!

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I have found my footing again.

Reorientation.

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Special K’s operation

I wrote about this topic rather clumsily a few days ago, before my nephew Special K’s operation to remove the large plate in his thigh. Many thanks to those who commented but I deleted the post, and its Facebook counterpart, because I thought it might be better to wait until after the operation was over.

At 13, Special K is now over 6’2″ so the plate had to be removed because of how much he has grown since the car accident. Like all of our extended family, I was feeling a mixture of anxiety and confidence that it would all go well.

Well, Special K came through the gruelling operation (apparently an actual hammer was required) with flying colours, and was discharged the very next day – yesterday! As I was in Perth anyway, I was able to visit my brother, sister-in-law and SK in their hotel room. SK was lying on his bed, nonchalantly doing something on his iPad, while his mother was zooming around the city looking for KFC. I had a chat with my brother, then the chicken arrived much to SK’s relief.

As I watched him gobble his 5 pieces (or was it 6?) and noticed his parents’ tired but relieved faces, I squeezed Special K’s toe, then left them all to rest. SK was having to, once again, use crutches and take painkillers, and they were all planning an early start this morning as they live around 6 hours south of Perth.

I only live 2 hours south of Perth so I got home not long ago, and immediately checked my emails. My mother had sent me one and I was amazed to see that Special K and co. had dropped in to have breakfast with her on their way home – a significant detour!

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I love this family.

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Surprise

Yesterday, I arrived at the nursing home much later than usual (around 5pm) because I was going to a 21st. Anthony was eating his evening meal and much more alert than I expected him to be. Sometimes he is unable to even form a word, let alone a sentence, especially late in the day. But he is good at surprising me!

Anthony: Where have you been?
Me: Oh you know, busy.
Anthony: Well, you’re here now.
Me: Not for long. I’m going to a 21st!
Anthony: Whose?
Me: G’s, you remember G?
Anthony: Am I invited?
Me: Of course but I don’t think you’re well enough.
Anthony: Rubbish!

I helped him with his meal while we watched the news.

Anthony: Well you better go then.
Me: What? I don’t have to go yet. Don’t get huffy with me, boy! I spend a lot of time with you, almost every single day, and when I’m not with you I miss you. I’m doing my best, Ants!

And then Anthony came out with such an eloquently profound statement it almost took my breath away… but I am developing quicker reflexes.

Anthony: Well, compared to the time I’d like you to be with me, you’re not with me at all.
Me: Oh shut up, you silly old fool!

Then I hugged and kissed him and, as soon as he smiled, I left for the party.

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When I look at these wedding photos, recently dug up, I feel amazed that we still have that same joy, regardless of the circumstances. And I feel a constant sense of surprise!

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To resuscitate or not to resuscitate?

This afternoon Anthony and I had a case conference with one of the registered nurses (RN) at the nursing home. This kind of interview is done from time to time (I think it’s annually) so that residents and/or relatives can provide feedback about everything from the quality of meals to the aesthetics of the room to the drug regime etc.

Obviously the quality of care is paramount so I just pointed out that if the television is on, Ants can’t focus on the job of walking to the shower despite two helpers, because the noise of the TV confuses his senses. I also wanted it noted that he hallucinates; that he asks me for panadol regularly but, due to his verbal difficulties now, and dementia, and that farmer stoicism, would never ask for pain relief from anybody except me.

Anthony didn’t really understand what was going on but the RN and I continued to try to include him. I was sitting on the left arm of his armchair and the RN was facing us. She wrote everything down and conversed with us as a couple as much as she could but when it came to hospitalisation I said no.

The last question on the case conference form was palliative. I think this is now a standard question and I think I have been asked this same question on numerous occasions over the nearly four years that Anthony has been in the nursing home. I still haven’t provided an answer.

But today, when that question was asked, I cried a little bit, quite openly, and the beautiful RN, cried a little bit too when Anthony said:

“You’re crying because you’re under more undue stress than usual.”

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Elsewhere

The horrific carnage in Beirut and Paris is an indication of a very serious hatred, fuelled by a proliferation of small pockets of extremists. Regardless of religion, history shows that fundamentalism, in all its flavours, hurts us, hurts the whole wide world.

As I sit with Anthony in his nursing home room, tell him about recent events, and watch him sleep, I realise how insignificant our problems are in comparison to what is happening/has happened elsewhere.

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Anthony’s sense of humour

Yesterday my first-born nephew (I have six nephews on my side of the family), and his beautiful fiancĂ©, visited us in the nursing home. Jared has always had a soft spot for Anthony and vice versa. I didn’t tell Ants they were coming because I wanted it to be a surprise. It’s awhile since they’ve seen each other because Jared lives several hundred kilometres away, and Ants hadn’t met Carly yet. I was very excited, and a little bit nervous, about the visit.

When the young couple entered the room, I was in the middle of feeding Ants his tea; I jumped up and said, “Ants, Ants, it’s Jared; Jared’s here!”

Without the slightest hesitation, Anthony looked up at Jared and mumbled, “Well, I didn’t think it was Jesus Christ.” We all cracked up laughing, as I introduced Ants to Carly.

Anthony’s sense of humour, sometimes expressed in sentences that come out of a void of silence, always flabbergasts me. It can be a bit of a struggle for me to get Ants to talk, to smile, to even look at me. And yet, with a single remark he can have me laughing my head off!

Thanks, Jared and Carly; you two will now become a topic of conversation in the future. I will remind Anthony of his funny remark about Jared not being Jesus Christ, and, in my more contemplative moments, I will, perhaps, wonder if he was.

Anyway, back to Anthony’s sense of humour: I lightly kicked his shin as we were leaving and he said, with mock ferocity, “There’s no need for that!”

[Note to blogger friends: After my modem died and was replaced, my computer then died but has now been replaced, so I am very behind with reading other blogs and Fbook posts. In other words, I have fallen in love with the word ‘delete’ because there is too much to catch up on!]

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Sustenance

Anthony used to be a big eater. I remember one Christmas lunch at his brother’s house across the road where, as a bit of a joke, Anthony’s plate was piled impossibly high with food.

We all watched in awe as he consumed the lot. Afterwards, I had to take him back home to lie down and I remember being astonished at the size of his tummy; he looked like a pregnant woman. I also remember being a bit alarmed by his groans but unable to suppress my fits of laughter as I mopped his brow.

I don’t know if other members of his brother’s family remember this because it was probably about 30 years ago, but it is one of my funniest memories. Sometimes, now, when I am helping him with his lunch, I remind him and sometimes he remembers too.

Except for that day, Ants was never fat; robust and well-built, he was rather vain about his weight. He still is! Over the many years since being diagnosed with Parkinson’s disease and prostate cancer he has lost over 20 kilos and I am rather jealous of his flat tummy. When I admit this, he proudly pats his, and then prods mine in a way that can only be construed as critical.

Anyway, he still loves his food. The main meal of the day at the nursing home is always wonderful; roasts feature regularly and Ants gobbles these up. The only trouble now is that he often needs help, which is why I try to be there by noon, or else get my mother to be there for me.

Dina (my decluttering friend) was there the other day and noticed that Anthony tended to poke at his meal, spilling some of it onto the tray. On another day, my mother told me that he didn’t touch the fish because it was white, the sauce was white, and the plate was white, so he just didn’t see it. On both occasions, he was helped of course.

As for me, I usually resort to feeding him. Yes, I get it about independence and all that but Anthony seems to have forgotten how to use cutlery and often doesn’t remember how to drink from a cup or glass, and the feeder cups seem to mystify him. Obviously, if none of us are there, staff will come to the rescue so that is very reassuring. His food is always cut up for him which is good but the fact that he seems to have forgotten how to negotiate fork-to-food-to-mouth is a bit alarming.

Our conversation the other day may, or may not, shed light on this newish problem. It was noon and a carer brought his lunch in and placed it on his tray.

Once I had unwrapped the meal from its foil and put the bib on Ants, I began to use a spoon to gather the first mouthful. As always, Ants asked me to eat some too; he wanted to share it. And then, looking at the plate of food, he began a rather bizarre conversation:

Anthony: Am I in there?
Me: Are you in where?
Anthony: In there [pointing to the meal]
Me: Do you want to be in there?
Anthony: Yes.
Me: Okay, let me check; yes, you are in there.
Anthony: Good.
Me: So are you okay to eat it now?
Anthony: Yes.
Me: So I am putting you back into you?
Anthony: Whatever you say.

It’s times like these that I remember the Anthony whose appetite for life enthralled me.

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