jmgoyder

wings and things

14. Death and dying

About a year ago, Anthony had a series of TIAs (mini-strokes) and was unconscious on and off for a few days. I panicked and began funeral arrangements but he ‘did a Lazarus’ and has been as okay as is possible since then. Recently – the last few days – I have noticed a marked deterioration and this afternoon I couldn’t wake him up and he looked deathly.

I am once again afraid even though I know that tomorrow he will probably be bright-eyed again like he was a week ago. On the other hand, I think I better go back to the funeral people and finish the arrangements just in case.

A friend of mine, whose husband has been in care for around the same time as Anthony (he had a massive stroke), has invited me to a seminar this week on death and dying so I’m going to go. I think it will help me to be more prepared mentally and emotionally. If Anthony were suffering constant pain or distress I would be wanting him to die, but he is so comfortable and uncomplaining that I can’t even imagine it.

It is so many years now that I have been trying to prepare myself for Anthony’s death – ever since the prostate cancer diagnosis when the urologist said he probably had 1-3 years to live (around eight years ago!) But then the Parkinson’s disease took precedence and has been by far the more debilitating of the two diseases.

The fact that Anthony is still such a huge part of my life on a daily basis (even when I don’t go in to the nursing home), the fact that I don’t find visiting him and being with him at all onerous, and the fact that we derive so much enjoyment from each other’s company, leaves me ill-prepared. It will not be a relief when he dies; it will be the most grief I have ever felt, and I’m not ready.

I don’t think Ming is ready either, although he just assured me that he is, well, sort of. He also assured me that he will come with me next time I make an appointment with the funeral directors. I think it’s about time we got back to the business side of Anthony’s death.

One of the things I should probably do is to figure out what to do with my ‘Anthony time’ once he is gone. Of course there is the book I’m writing and that will help, but the gap he will leave in our lives is going to be massive.

This feels like the peak of the anticipatory grief I have felt for so long that it’s like a second skin; this is the knife edge of the most terrible mixture of fear and love. But perhaps this isn’t the end after all and tomorrow Anthony will look at me, smile his slow smile and repeat what he said the other day: “You’re still beautiful, Jules.”

 

 

 

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13. Bittersweet

In recent weeks, Anthony is either in bed or in a broda-chair (armchair on wheels). It is a long time since he has been able to walk or sit in a regular wheelchair and, although he is able to weight bear to an extent sometimes, he is more or less bedridden now. I am becoming used to what is still a bit of a shock.

Yesterday, I visited in the late afternoon (something that I had intended to do more regularly – famous last words). He was in bed, looking very comfortable and content. I fed him his vitamised dinner which he gobbled, and some chocolate that I had brought with me. At one point he raised his hands underneath the blanket and they kept getting in the way of the spoon.

Me: Why are you doing that with your hands, Ants?

Anthony: Because I lost them five days ago.

Me: Oh! When did you find them again?

Anthony: Last night.

Me: Where were they?

Anthony: At the nun’s place.

Me: You mean Sister R?

Anthony: Yes.

Me: She’s amazing isn’t she.

Anthony: Wonderful.

We aren’t Catholic but we do have a very good friend who is a nun and she has blessed Anthony on several occasions over the years, so I put two and two together. The way Anthony’s memory works now fascinates me; it is fragmented and peculiar but sometimes wonderfully symbolic.

At around 6pm, he began to drift into sleep and, as I stroked his head, I felt a lurch of bittersweet emotion. I whispered goodbye and kissed him, thinking he was asleep.

Me: You are the most beautiful man in the world, Ants.

Anthony (murmuring): I know.

 

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“Thoughts on hearing loss”

Awhile ago my mother had an epiphany about being deaf. She was at a social occasion and, as usual, finding it very difficult to keep up with the conversations around her. Meg never complains about this despite the fact that, at times, she must get extremely frustrated and even depressed about not being able to hear. Her hearing loss wasn’t gradual; it happened all of a sudden in 2003, just like that! Since then, it has become worse, even with the use of various hearing aides.

I love the following poem that she wrote because it shows the kind of resilience she has, and is a great example of acceptance. With three children, eleven grandchildren, with spouses and partners, four great grandchildren, and one on the way, family occasions are often loud, boisterous and Meg often misses out on any or all of the conversations around her dinner table, even if only a few of us are there. But the poem shows her ability to derive joy anyway:

The Owl
I perch nearby
Look down and see
A nest filled up with hatchlings.
Their beaks are open wide
A thousand feathers flying.
The patient mother drops a worm.
They squawk and flap.
Cacophony of joy.
She drops the next
And bedlam fills the air.
I watch.
I smile.
I share.
I am alone
But
I am there.

 

 

 

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Our TEDx talk

Here is the link to the talk Ming and I gave the other day at Bunbury’s TEDx event.

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12. The proposal

Anthony was in good spirits and wide awake this afternoon. I had Pip (our miniature schnauzer) with me, so I plonked her onto the bed next to Ants and we all watched a cooking show on the television.

When it came time to leave, Anthony was quite happy for me to go as he thought I was going to work. This was such a relief because yesterday he got cross with Ming for not bringing him home, so I was a little apprehensive about today.

I am so used to seeing Anthony’s blank or sleepy facial expressions (due to the Parkinson’s Disease effect on his facial muscles), that when he does smile it is like some sort of miracle. He was so alert and responsive as I was leaving that I wanted to steal our goodbye kiss/hug and bring it home.

Anthony: Let’s get married, Jules!

Me: We are married, Ants!

Anthony: Yes, but not officially. We should get married as soon as possible.

Me: But we are married! Remember how Tony [my priest friend] came down and married us?

Anthony: That’s right – just the other day. You mean last week?

Me: Yes.

Anthony: So what do you say?

Me: What?

Anthony: Let’s get married, Jules.

Me: Oh! Okay – yes!

I am not quite sure why the excitement in Anthony’s 81-year-old voice, sounding so much younger in that simple proposal, has affected me so much this evening. It’s as if we are in one of those time loop situations.

 

 

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11. Lightning visits

During my bout with mycoplasma pneumonia, I wasn’t able to visit Anthony for about a month, if I include the week before and after hospitalisation.

Ming and my mother, Meg, visited him almost daily and that way I could speak to him on the phone, tell him (in my usual dramatic way) that I was terribly sick and in hospital and that’s why I wasn’t there with him. All these weeks later, now that I am well again, Ants still remembers my absence and continues to ask me if I am okay. A couple of the carers at the nursing home said that he behaved differently during this time, that he was uneasy I guess. I think that maybe the way he was missing me was quite visceral, rather than cognitive but I don’t know.

Now that I am pacing myself better, and looking after my health with lots of green juice, homemade dahl, and sourdough, I’ve allowed myself to do what I call ‘the lightning visit’ –  a visit lasting a few minutes rather than a few hours.

The lightning visit idea allows you to visit your loved one fleetingly, but memorably. I might spend most of an afternoon, holding Anthony’s hand, watching his favourite comedy, whispering sweet nothings into his ear, and the next day he will say, “Where have you been for so long?”

On the other hand, whenever I am on the fly and in a rush, Ants remembers my visit – the rush of it, the urgency of me having to be somewhere else. Sometimes that ‘somewhere else’ is a volunteer commitment, a get-together with friends, a dentist’s appointment, but sometimes this is my excuse to go home.

The other day, when I was leaving Anthony after a lightning visit, I apologised to him and he said, “Don’t be sorry, Jules. You are so sweet.”

Okay so I am not particularly fond of the word ‘sweet’ because it’s just too sweet, but it reminded me of when Anthony was wrestling with the idea of us getting married. He was so worried about our 23-year age difference and kept saying that I was too sweet.

I remember that moment vividly.

Lightning

 

 

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