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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6. The most beautiful word: Yes

“Could you just put that skeleton onto the hose?”

“You are always doubling and tripling and doubling.”

“There he is – that little bastard – see? In the corner. With the horse nose.”

“I don’t want to be in this school anymore.”

“This is the most wonderful pub!”

“The dogs need to be let out. Do it gently with the first ones. We have too many.”

“Does the congregation know that you found the bodies?”

“It was a pirate ship and those kids kidnapped me again.”

“See this thing? [often his knee rug]. “Can you loop it around these things?” [his hands.] “Yes, good, that will stop the rain from getting into the crevices.”

The above are just a few sample statements made by Anthony over the last several years. There is a context to some of these statements which I will elaborate on later in this book, but most are uttered spontaneously and sometimes with what seems a subdued desperation.

If you are caring for/or about someone with Dementia who is close to you – a spouse, parent, friend – it can be extremely difficult to know how to respond. For example, it can be very tempting to counter what seems like nonsense with logic, like:

There are no bodies, or a pirate ship. It’s not even raining! We only have two dogs, the hose is fine, we’re not in a pub or a school – we are in a nursing home! Who are these kids you keep talking about? What the hell are you talking about? You are paranoid, you are delusional and I can’t cope with this nonsense anymore. Please, Ants; this is so unfair on me. Pull yourself together!

I’ve highlighted the above to emphasise my frustrations over the years with Anthony’s gradual transition into the confusion of Dementia. Of course, I am not proud of my impatience with him but, early on – especially during the last year Anthony lived at home and the first year of the nursing home – my moodiness was acrobatic and just as unpredictable as his confusion.

The only thing that remained a certainty for us during these tumultuous times was our inviolable love for each other. Anthony’s reluctance to marry me all those years ago stemmed from his anxiety about the age difference (23 years). He didn’t want to burden me with his old age. I said I didn’t care but for some reason, despite my nursing background and my PhD research about Alzheimer’s Disease, I never once considered that one day Anthony would not only be old, but also very sick.

We were married in 1993 and at that time Anthony was fit, robust and full of energy – a passionate dairy farmer. Neither of us could have anticipated that in the first year of Ming’s life, Anthony would succumb to kidney cancer. I can remember taking baby Ming into the hospital to see Ants in between two surgeries, the first to remove a tumour from his left kidney, and the second to remove the whole kidney. Our tears then were not just about the trauma experienced and the idea of cancer, they were also about Anthony being advised not to ride a motorbike anymore.

Anthony was only 58 back then (the same age I am now) and he loved riding motorbikes. Dairy farmers don’t have much time for hobbies, but this was his and, in retrospect, I now see that this would have come as a terrible blow for Anthony. The cancerous kidney was gone, yes, but this experience altered things in a forever way.

Ming had his first ever asthma attack in that hospital room. My mother took him into her arms while I rushed to find a nebuliser and Ventolin for Ming.

Later that week we brought Anthony home – wan, pale, diminished, and so weak. But he soon got better and went back to milking the cows, enjoying being a father, and loving me with a fervour that devastated me because I could already see the writing on the wall. I’m not a scientist or a psychologist but I do believe that our kidney cancer year somehow made Anthony vulnerable to the many illnesses he has contracted since then.

Now, nearly two decades later, Anthony often reassures me that he is getting better.

Me: YES.

 

 

 

 

 

 

 

 

 

 

 

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1. Sixteen Kilometres

I have been wanting to write a book about our experience of Dementia for some time so this is a chapter draft. I am numbering them so I can keep track. Any feedback appreciated.

SIXTEEN KILOMETRES

When Anthony says he has run sixteen kilometres, fixed all of the fences around the farm, and found the rogue mouse, do I correct him? Of course not!
Yes, Anthony used to love running around the paddocks (for the sheer joy of running). He also used to love the fiddly aspects of fixing fences, and I vividly remember his hilarious determination to eliminate a mouse, using a fly swat, in the hallway of our house.
So, when Anthony talks about these things as if they have just happened, I go with the flow by acknowledging these accomplishments, hallucinations and memories. I only ever contradict Anthony, if what he is seeing, or sensing, is distressing to him (more about this later).
Anthony: There he is in the corner, Jules.
Me: Who?
Anthony: The baby.
Me: You mean Ming?
Anthony: That furry one there [pointing to the corner of the room where is nothing]
Me: So is it a dog or a child?
Anthony: A bit of both.
Anthony sometimes forgets that Ming (our 23-year-old son) is all grown up, so he often ‘sees’ Ming as a baby or toddler. This hallucinatory thing mostly happens when I am visiting by myself. When Ming visits by himself, Anthony often misrecognises Ming as a cousin, uncle, even a deceased relative. I had already prepared Ming for the inevitability of Anthony not recognising us so, when it happens to Ming, it’s okay.
To some people, the idea of not being recognised by a spouse or parent or friend is the last straw. It’s quite common for relatives and friends to stop visiting a loved one, because they aren’t recognised. So what! As long as you recognise him or her, then surely that’s what counts. People with Dementia don’t intentionally hurt the people they used to know so well; they don’t intentionally misrecognise.
Anthony: Where’s Julie?
Me: I am Julie.
Anthony: Oh, that’s right.
Maybe it’s the constancy of my visits, maybe it’s because, despite Anthony’s Dementia, he and I still adore each other, maybe it’s just luck, but Anthony almost always knows who I am. I am so glad that I’ve been transcribing our dialogues for so long because, even though these conversations are mostly short and sweet, they are like gold to me.
Not long ago, I entered his nursing home room after days of not being able to visit because I was sick. It was the best welcome I have ever received (from anyone):
Anthony: Wonderful, wonderful, wonderful. Beautiful, beautiful, beautiful. I was just trying to conjure you.
Me: Oh, Ants – I’ve been so sick!
Anthony: Yes, I know. The kids told me.
Me: Are you okay?
Anthony: I’ve been running.
Me: Again? No wonder you look so tired! How far did you run this time?
Anthony: Sixteen kilometres.

 

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Values

Ming and have both sought psychological help over the last few years and one of the most difficult questions to answer is “what are your values?” I think this is a very tricky question, but an important one. It is also a question that I have found extremely challenging to answer.

Stereotypical answers might be: health, family, financially okay, great relationships, good job, political stability, beautiful kids, long life etc. but these are too vague and I don’t like my own vagueness.

Perhaps the question should be rephrased to “what do I value?” This turns the noun ‘value’ into the verb ‘value’ and, in my opinion, makes the question easier to answer. For example, I know what I value most, whereas I can’t quite pinpoint what my values are.

What do I value most?

  • Kindness (the giving and receiving of);
  • My son’s growing wisdom;
  • Anthony’s smile;
  • Authentic relationships with family and friends;
  • Humour;
  • My ability to write about dementia;
  • The new puppy, Pip;
  • Honesty; and
  • Salad.

I haven’t been very good lately at looking after my physical, psychological and emotional health but, like many, I baulk at self-helpy stuff. But there is nothing wrong with self-help! After all, the best way of helping others, which is something I feel passionate about, is to get yourself on track first, surely.

Ming comes home tomorrow from a 6-day intensive beginning to a diploma in psychology which he will complete in around 15 months. He seems to have found his niche and I can’t wait to hear about all of it; we have already had some fascinating phone conversations.

Even pre-dementia, Anthony would never have understood Ming’s passion for helping people; nevertheless he would be so proud if he understood. Often Ants still thinks Ming is a toddler so when this great big man steps into the nursing home room it can be a bit confusing.

Ah yes – other things I value:

  • Laughter;
  • Still being in love; and
  • Ming.
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Agog

There is something particularly endearing about Anthony on the days that he appears to be agog – his eyes wide and staring into space, or just past my left ear (because I usually sit on his right). It’s a look of such bewildered blankness that it makes my chest tighten with sympathy for whatever he is feeling behind those huge, unreadable eyes.

Today was one of those staring days in which Anthony also found it difficult to speak and mostly just uttered fractured sounds. Even when a dear friend came to visit, Anthony couldn’t quite rise to the occasion of coherent speech and did a lot of ‘d-d-d-d’-ing, finally giving up and sighing resignedly.

I remember one day, months ago, when Anthony’s speech had begun to slip and slide into slurring, he gave a little gasp of frustration with himself but still managed to get a single sentence out” “I can’t talk.” I hugged him and reassured him that it was okay because I could read his mind. This seemed to reassure him so, on days like today, I remind him of my mind-reading abilities!

It still seems like a remarkable coincidence that I would concentrate all of my energies, as a university student, so many years ago, on dementia (before it became Dementia), and well before I married the man who would one day succumb to the strangeness of this disease. The fact that there is now so much more attention paid to Dementia, and that I can be a part of raising awareness, is a wonderful thing and I am especially glad to be involved as a volunteer.

I’ve begun to write an article on Dementia care that I will be submitting to a journal that has published my work before. It’s an article that attempts to put a positive spin on Dementia and on the nursing home placement decision. I hope to interview various staff, residents, relatives and professionals from a variety of contexts and organisations – anonymously of course – in order to put together a series of personal stories that reflect the reality of this situation’s many facets.

It is now a few hours since I left the nursing home and I am, as usual, sun-downing too! Is Anthony okay? Warm enough? Too warm? Happy? Upset? Confused?

Agog?

Will he know how much I miss him?

 

 

 

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Poetry and sentences

When a little parrot you have never seen before

trips clumsily over the fragment of a mung bean sprout

you have placed on the balcony ledge

of the resort you have brought your mother to, to celebrate her 82nd birthday,

you hold the rest of the mung bean sprout in the palm of your outstretched hand

and smile when that little parrot takes it and flies away,

its wings flapping once

like a wink.

 

That sentence was too long and I don’t know if I have punctuated it properly for poetry. But I do remember advising my creative writing students to use commas when they felt the need.

 

Ming, Meg and I spent some time together at this wonderful resort and, thanks to Wifi, my mother was able to receive the multiple birthday messages from family and friends. We all thought the little parrot would come back as it seemed so tame. Having taken multiple photos of a similarly tame-seeming kookaburra, it seemed inevitable that the little parrot would return for a photo shoot – ha.

 

I had seen Ants and fed him his lunch on the day I drove us down south to the beautiful resort. My mother and I were supposed to check in at 2pm but I was delayed because Anthony was in ‘agony’ (his unusually dramatic words, whispered to me) due to constipation. Once that the situation was remedied and he was back in his armchair and comfortable, I told him I was taking my mother out for lunch for her birthday.

Anthony: I think I might stay here.

Me: That’s fine, Ants. I’ll see you after the birthday lunch.

48 hours later, my mother and I arrived at the nursing home in time for me to feed Ants his lunch again. He didn’t appear to realise that I had been gone for longer than a day which was a blessing to me.

 

During our time at the resort, my mother and I basked in the luxury of the beautiful view, the wonderful wineries, the gift-shops where I found unusual wine glasses (my latest hobby). My mother found a fantastic onyx ring which absolutely made my day. And we walked through the rather magical gardens – just us the first time, then with Ming who came down laden with three varieties of Bailey’s Irish Cream – his birthday present for Grandma.

 

I saw the kookaburra once more, from a distance.

My mother recollected how much I cried and cried after placing Anthony in the nursing home and I admitted that I didn’t remember this phase. I know I can look back on my blog and re-see that pain but I don’t want to because it is all fine now; Anthony, Ming and I have accepted that it is what it is….

Happy birthday, my beautiful mother – thank you for your support and love for all of us, not just me. I have learned the most important life lessons from you – to be ready for anything and to always, always, get back up from a fall.

And I know that parrot’s address

like a wink….

 

 

 

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An ‘aha’ realisation

Today I did some volunteering at another nursing home before going to see Anthony. I told him I had just come from work (I call the volunteering ‘work’ because Anthony’s lifelong concerns about money are still a big part of his psyche).

Anthony: So how much money is in the bank?

Me: Thousands!

Anthony: How many?

Me: (pulling a fictitious figure out of the air) $35,000!

Anthony: That’s not bad.

Me: What do you mean ‘not bad’? My job is making us rich! You should be proud of me!

Anthony: I am, Jules.

Me: Ants, the reason we are so wealthy is due to all of your shares and your hard work. We don’t ever have to worry about money again because you are such a good provider!

Anthony: But did you turn the pump off?

Me: Ming does all of that now.

Anthony: What about the calves?

Me: All safe, tethered and beautiful. You should be proud!

Anthony: I fixed that fence this morning.

Me: I know – thank you. Everything is fine now.

Anthony: But what about Mum?

Me: Ming is with her – she’s fine.

Anthony: Okay.

Me: I have to go back to work now – will you be alright?

This was our conversation at about 4pm today and I used ‘work’ as a way to leave him with the assurance that I would be back soon. As I’ve said before on this blog, telling Anthony that I am going home often distresses him because he wants to come home too – of course!

I have been naming the above such conversations as “Dementia dialogues” and I sometimes worry that this title may be construed as demeaning or patronising to Ants and other people with Dementia. This is certainly not my intention.

As I was leaving, we had this conversation:

Anthony: You don’t have much of a life do you.

Me: What are you talking about, Ants? I have you and Ming – what more do I need?

Anthony: But we’re all split apart.

I was so shocked by the lucid poignancy of this statement that my heart felt like it did a somersault. Anthony said this without a flicker of unhappiness and I remembered how factual he used to be – how pragmatic.

And then, just now, before I began to write this post, I realised that Dementia might affect, and sometimes kill, physical and cognitive memory, but it doesn’t necessarily affect emotional memory.

I told Ming what Anthony said today and he punched his heart softly.

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Nothing/everything has changed

I feel a sense of trepidation, re-entering the blog world after what seems a very long time to me, but is actually only a month. It has been wonderful to be free of the compulsion to both write and read but it’s also very difficult to avoid the guilt; after all, blogging is a reciprocal activity.

Some of my blog friends are also Facebook friends so, to the latter, I apologise for any future repetition but I have been trying to write 500-word column-type articles about Dementia. The reason for this is that I’ve begun volunteering for various organisations that work hard to ensure the ongoing improvement of Dementia care in Western Australia.

The fact that these organisations have welcomed my input so warmly has motivated me to write, network, and speak much more vociferously, about Dementia care, and the opportunities are opening up! This is very exciting for me as I have been a fairly silent, but passionate, advocate for many years. There is a strange, yet wonderful, serendipity in the fact that I was completing my PhD about Alzheimer’s Disease and storytelling during my newlywed years. I had no idea then, of course, that Anthony would one day succumb to PDD (Parkinson’s Disease Dementia).

One of the most delightful things that has happened over this last month is that Ming, our 22-year-old son, also wants to share our story from his perspective. And I don’t think our story would have the same oomph without his input. Ming has, many times, saved me from despair, and vice versa; Anthony and I have the most incredible son with a capacity for empathy that beats the hell out of mine!

Anyway, this post is a rather clumsy re-launch of my blog. I am not going to try to catch up with others’ blogs for the time being, but will certainly keep in touch one way or another. I really just want to focus on Dementia for the time being.

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The pink sky

I watch the sky pinking from our front veranda and, breathing easily now, again, I wonder with a deep curiosity about your strong voice to me on my mother’s phone yesterday. Your voice was louder than usual, and comforting. You remembered my few-and-far-between asthma attacks just as you remembered the drama of how we turned orange from too much carrot juice years ago. I couldn’t believe how strong your voice was; you sounded so normal and in control; your voice wasn’t whispery, you didn’t sound confused, you helped me.

I have now drawn the blinds on a pink sky gone dark and am into day two of no steroids for the asthma. Some friends/commenters have suggested that this asthma attack may well be due to emotional stuff and I am quite willing to accept that possibility. Perhaps the ongoing, relentless, anticipatory grief of losing my beautiful husband has gotten the better of my psyche. Perhaps seeing our son’s grief and bewilderment has turned everything I once saw as pink into a dull grey. I don’t know.

It is probably a terrible pressure on a single son to ask for the pink in the sky to come back, but I know, without any doubt, that he can do this. Ming.

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