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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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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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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Doing it

I bumped into some relatives today at our local, rural, shop and they said they had intended to go and see Anthony today, but it was too late in the day. It was raining relentlessly so I admitted that I, too, hadn’t gone into town to see Anthony but that Ming was doing it.

Doing it?

Why did I describe my visits to Anthony as a job that needed to be done? Why didn’t I say, “Ming is visiting Ants today”? instead of “Ming is doing it today.”

I am so embarrassed that I expressed myself this way because for all of these years I have felt and believed that the romantic love I share with Anthony would somehow sustain us. In fact, as Ming often points out, Anthony is now mostly lost in his world of Parkinson’s Disease Dementia. Yesterday, for example, Anthony was mostly asleep during my 2-hour visit and this is often the case.

Perhaps love is not simply a feeling but also a decision. For me, this realisation has made all the difference recently because in deciding to love someone, that ‘do it’ decision, is an absolute in the face of multiple contingencies.

Do it.

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“A person with dementia is not a person who is dead and gone.”

This was the sentence that I began, and ended, our TEDx talk with last week. Like the other speakers, Ming and I only had 15 minutes to deliver this talk which was a challenge as I had written this massive missive of around 20 pages! Thankfully Ming convinced me to turn this into a cue card presentation and we practised it in a hallway before the event began.

It is extremely difficult to talk about Dementia because everyone has a different story of what it’s like (for both the person with the disease and the carers). Ming and I now have a disclaimer that admits our luck in that Anthony’s personality hasn’t changed and that this is one of the many reasons we still find joy in our interactions. We acknowledge that other people, coping with the multi-faceted aspects of Dementia, may be in hellish situations.

I am so glad that Ming and I had the opportunity to talk about our own situation. Anthony is immobile now, his previously loud voice a whisper, and mostly he doesn’t know who Ming is. But he is still alive, free of pain, accepting and full of love for me; it’s a beautiful thing.

If I can influence just a single person to visit their spouse, parent, friend, I will feel I’ve made a slight difference. There are so many thousands of people with Dementia in nursing homes who never have contact with loved ones; these people are, quite possibly, the loneliest people in the world.

A person with dementia is not a person who is dead. And nobody is ever, ever, gone.

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10. Dementia Context

Yesterday afternoon, when I visited Anthony in the nursing home, he was in bed. He’d been showered and had been up in the broda-chair (armchair-on-wheels) all morning and was tired.

I positioned my chair so that my face was close to his and this was our conversation:

Anthony: I was so depressed yesterday, Jules.

Me: Why? What happened?

Anthony: Well, I went down to Bridgetown to help out but all the farms are in disarray.

Me: So did you manage to fix some of the problems?

Anthony: Only some.

Me: I can ring Fred if you like, or Simon? Just to make sure?

Anthony: Good idea.

Me: So are you still depressed?

Anthony: A bit.

Me: So what can I do? I’ve rung the guys and they are fixing everything right now! It will all be okay, Ants – I promise.

Anthony: Beautiful.

Me: What is beautiful?

Anthony: You.

Dementia doesn’t equal death. People like Anthony can survive for many years with Dementia, either at home, or in care.

I feel so passionate about raising awareness that people with Dementia, even if they don’t know who you are anymore, cognitively, still appreciate a conversation, a hug, and, most importantly, your presence in their lives.

To begin with, nearly six years ago, I could hardly bear my visits to Ants because of how heartbreaking they were. He wanted to come home and I wanted him to come home and, yes, we tried this over and over again but his Parkinson’s Disease won. Once he couldn’t walk that was it and I had to get the wheelchair taxi to come and get him and take him back to the nursing home. I felt as if I had abandoned my soul one Christmas when this scenario played out in my mother’s driveway in the midst of our family get-together.

Context: Anthony was/IS a dairy farmer.

He has never lived in Bridgetown.

 

 

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