Me: Daaaarling!
Anthony: Jules!
Me: Why do you look so surprised?
Anthony: Well, I was going up the passageway and I saw her. It was extraordinary.
Me: Who did you see?
Anthony: You.
Dementia dialogues 23
by jmgoyderAlzheimer's Disease; Dementia Anthony Australia blogging death and dying depression Family Friendship Grief Happiness Humour joy laughter LOVE STORY Marriage nursing homes Parkinson's disease Parkinson's disease dementia
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Laughter
by jmgoyderOne of the best things about my relationship with Anthony is that we are usually on the same page when it comes to humour, AND we are both able to laugh at ourselves. Today, I was feeding him his lunch and this was our conversation.
Me: You like this chocolate mousse stuff don’t you?
Anthony: I didn’t always.
Me: Well you obviously do now – you’re like some sort of lizard with your tongue sticking out for every mouthful.
Anthony: Delicious.
Me: Okay well I have to go to work now (volunteer job) so is there anything you want?
Anthony: Your hair ….
Me: OMG yes, yes, yes, my hair is due for a trim – anything else?
Anthony: It’s a matter of urgency.
Me: Urgency! Are you kidding? My hair? How dare you!
Anthony: But your face is beautiful.
Me: Too late for that kind of rubbish, Ants – you’ve done your dash!
Laughter … the most wonderful, magical thing in the world.
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Dress rehearsal
by jmgoyderIt’s now been a bit over a month since I thought Anthony was on the brink of death. In the space of a couple of days, he had suddenly become unable to chew and swallow food in the ordinary way, and, on two occasions, had been unconscious for several hours.
The fact that these two ‘end-stage’ things happened in a matter of days convinced me that Ants was definitely on the way out – soon. I was catapulted into action, messaging family members, making appointments with funeral directors, our lawyer, meeting with my best friend, the Anglican priest who blessed Anthony with the last rites, picking songs for the funeral, and asking nearly 20 people to be pallbearers ….
And then, as my new friend Moira described it, Anthony “did a Lazarus”. Okay, so that is all very well and I am glad, but the panicked anxiety and anticipatory grief I felt during that week has left a bitter taste in my brain. I feel as if I have been tricked, deceived; here I am all ready for Anthony’s death but the joke is on me because he is still beautifully alive, holding my hand and watching a movie with my mother and me… today.
Ming, our son, our one child, always gives good, sensible, pragmatic advice to me. He is an absolute rock of a person and has had to cope with Anthony not recognising him several times recently. Ming is philosophical about this because he already knows how dementia works.
No dress rehearsal prepares anybody for the death of a loved one.
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Caring for the carer
by jmgoyderI am on the brink of facilitating a couple of carer support meetings, so I thought this would be a good place to air some of my thoughts beforehand.
Carers/care-givers – who care for and/or about loved ones who suffer from diseases like Dementia – are, according to the latest research findings, amongst the loneliest people in western society. The loneliest people are, of course, those with Dementia, especially those in care, like my husband, Anthony.
I have always loved being alone and am comfortable with solitariness. I am not naturally gregarious but I do enjoy the company of friends. Until recently, I have never actually felt lonely, but now I do – acutely. I miss Anthony being home with me, with Ming, milking the cows, chopping firewood, lighting the Aga, cooking steak on the barbecue, washing the car, watching ‘The Bill’, snuggling up in the big bed with toddler Ming in the middle.
But these memories are now nearly two decades old. More recent memories are stark with the years of frustration, avoidance, anger, sorrow, exhaustion – mine mostly. Having to quit my job in order to take my husband to the toilet, to stop him from falling over, to hide the car keys so he wouldn’t try to drive, to turn taps off that he’d left running, to open the vegemite jar when he couldn’t….
For awhile Ants and I hid what was going on from little Ming but it wasn’t long before Ming had to help out. I became so exhausted that I ended up in hospital and after that Ming and I shared the night shifts with Anthony.
And then – years later – the nursing home decision, the subsequent paradox of guilt and relief and now – more years later – the ongoing grief and loneliness. I miss him so much!
I am very glad to have the opportunity to facilitate these carer support groups because I have developed a few ways of coping better than I used to. Until I became involved, as a volunteer, with these groups, I had no idea that there might be some support for carers out there somewhere. If I can be a part of this, I will be so glad!
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Galah!
by jmgoyderToday Anthony was perky, lucid, vocal and even sarcastic!
I had picked a double camellia bloom from our favourite tree but forgot to take a photo (sorry, flower-lovers!)
Well, he loved it but its stem was too short so one of the carers brought a bowl in so we could somehow keep it alive until tomorrow. There were many admiring exclamations from staff and I felt quite the gardener – ha! On this first day of Spring, there will be many more blooms and I will take them in every day because it gives Anthony such delight.
My mother, Meg, visited this afternoon and she, too, admired the double bloom.
Meg: This is a potentially prize-winning flower, Anthony!
Anthony: Yes.
Me: Ants, it’s my tree – remember? I paid a small fortune for that tree!
Anthony: Yes, but I nurtured and loved it.
Meg: I think God created it but did you have a hand in it too?
Anthony (smiling): Yes.
Me: I’m the one with the foresight to buy a rare tree!
Anthony is silent.
Me: Have I upset you, Ants?
Anthony: No, but you are irritating me.
A lot of banter followed this, then my mother went home. I put the food channel on for Ants and, as usual, pretended to go shopping for chocolate or blue cheese, saying I would be back later.
So, after a very panicky few weeks where I thought Anthony was on the brink of death, he has now come back to life it would seem. Surreal! How does this happen? It is beautifully scary but so disconcerting.
The last thing he said to me as I left this afternoon was “You are such a galah, Jules!”
Yep, I agree!
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Forewarned is forearmed
by jmgoyderYesterday was a day of terror for me and last night I couldn’t sleep, thinking that any minute I would receive “the phone-call” from the nursing home, to say that Anthony had died.
In the early hours of today, I eventually slept but woke up and, once again, in the grip of that horrible terror, I reached for my phone. No messages. Phew.
This morning, I headed in to the nursing home, thinking I would be met by sombre faces and bad news and, instead, I found Anthony, alive and in a wheelchair, watching the news in one of the communal areas. I wheeled him back to his room and managed to get him into his armchair, then rang a couple of worried relatives so that they could speak to him on the phone. He managed a few words but kept handing the phone back to me.
At noon, I fed him his vitamised lunch which he ate most of and he said, about the dessert (a frothy vanilla mousse), “My favourite”. I must find out what it is so I can bring him some, because he loves it and it’s easy to swallow.
After lunch, he fell asleep, just like yesterday, but he didn’t lose consciousness. I know this because, every time I shook him, he woke up. Yesterday, he didn’t.
Yesterday forewarned me by forcing me to face the prospect of Anthony’s death, something I have been reluctant to do until now. And, in facing this inevitability, I am now forearmed with the knowledge of how to plan his funeral, right down to the kind of casket/coffin to purchase (the cheapest is still around $1,500 – I had no idea – Ants would be appalled!) I have decided who to ask to do readings, be pallbearers, deliver eulogies and am now trying to decide what music would be appropriate.
The terror has gone – whoosh – gone! There is no way of knowing how soon Anthony will die – even the doctor can’t predict that – but, as the latest deterioration has been so fast, and so shocking to me, I feel much more prepared than I was.
And that’s a good thing.
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Flights of fancy
by jmgoyderA few weeks ago, Anthony told me he had been running all morning.
Me: How far did you run?
Anthony: Eighteen miles.
Me: Well, it’s no wonder you’re so exhausted! You must have overdone it. You’re not a spring chicken any more, you know, Ants!
Anthony: Shut up (smiling)
Me: Well bravo anyway. Have a nap if you want. You deserve it. I could never run that far!
Anthony: No, you couldn’t.
I love these flights of fancy, these ‘fabulations’ and, even though I know they are a product of Anthony’s Parkinson’s disease dementia, they don’t differ so much from what we all experience sometimes. Often I will wake up in the morning with what I call ‘adventure dreams’ still hanging around in my psyche, waiting for the next chapter, or a conclusion.
For someone who can barely walk now, it’s beautiful to know that Anthony thinks he can still run.
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Common sense!
by jmgoyderA few weeks ago Ming and I were having one of our on-the-front-veranda- philosophical discussions. I think it was nearly dusk but the sunset was around the corner of the house so I could only see it at an angle. This kind of experience reminds me of when my mother used to take us outside at dusk to look at the stars when my brothers and I were little.
I don’t look up enough into the sky’s various renditions; instead, I watch the loop of my internet feed, the news, blogs, my own constantly-halting story about Anthony’s Parkinson’s disease. Sometimes I feel inept, indolent; sometimes I feel an almost volcanic eruption joy after just sitting with Anthony for hours, holding his hand, stroking his head – just being with him.
Anyway, during the philosophical discussion mentioned above, I cry-laughed the story of how hurt I was by various situations and people over the last few months. “But do any of these things/people matter to you anymore, Mum?” Ming asked.
And all of a sudden, I realised that I was unnecessarily worrying about stuff/people/situations that, despite being an intractable part of the past, simply didn’t matter to me anymore. It was a revelation!
As Ming’s wisdom permeated my rather dusty psyche, I felt an enormous sense of relief and gratitude for the things/people and situations that DO matter to me.
Okay this is my last sentimental post about Ming for the time being, but he really is the most amazing person. Today this was our conversation:
Me: You are the best person I have ever met, Ming.
Ming: You didn’t meet me, Mum, you created me!
It’s nearing dusk and I am going outside to look at the sky.
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Moments
by jmgoyderToday, as I fed Anthony his lunch, he took my hot hand into his cold hand, and kissed it over and over again until I laughed hysterically.
Anthony: Shhhhh! You are so loud!
Me: I was always softly spoken until I met you!
Anthony: Shhhhh!
Me: Are you ready for your next mouthful? OMG you are like a starving dog!
Anthony: I’m hungry.
Anyway, after I fed him his lunch (he seems to have forgotten how to use cutlery – normal in cases of PDD) I got my mother’s amazing Christmas cake out of the cupboard and he pretty much vacuumed it all up!
Lately I have become a bit haphazard with visiting Ants. For example, when he is in sleep-mode, I don’t stay very long; but if he is in wide-awake mode, I stay. It’s a kind of loose arrangement whereby I try to spend at least a few hours per day with him. I should probably turn this into a more regular, regulated routine, but, since I stopped working at the university (and that is a few years ago now), I have lost any sense of daily routine. I suppose I have just been kind of going with the unpredictable flow of Anthony’s PDD.
When I take a day off from seeing Ants, I simply summon Ming or Meg to do so.
Almost every time I enter Anthony’s room, he looks at me and says: “How did you find me?”
Almost every time I leave Anthony’s room, he asks: “You won’t forget where I am?”
This afternoon, he whispered something a bit more poignant: “Jules, don’t forget about me” and I reassured him, of course!
His verbal antics aren’t so acrobatic anymore; his sarcasm is subdued, but the way Anthony stares at photos of Ming and me and him – especially the ones in which Ants is still healthy, I am young, and Ming is a little child – are particularly moving.
Now that Ming has converted a couple of videos into dvds (of wedding and baby Ming), I can see clearly how this nearly 40-year-old relationship has impacted on all of us in various ways.
And this is probably the moment in which I begin to cry (unless I find a good movie).
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Auto/biographical risks
by jmgoyderI was very fortunate to have once been a student of Elizabeth Jolley. She wrote fiction that was heavily laced with fact; she changed names to protect the guilty; she took risks.
The primary reason that I have hesitated over the years (decades actually!) to write what I think is a rather spectacular love story, is due to the yucky bits of the story – the betrayals, conflicts, mysteries and agonies in and amongst its success.
By writing increments of this “Once upon a time” story, I face the challenge of writing about how Anthony and I dealt with the disapproval of our relationship from both sides – from both families – and from well-meaning friends.
Over the last few weeks I have blogged outside the “Once upon a time” story, with tidbits of information about a recent event that traumatised me, and reminded me of some of the yucky stuff from the past. These posts, some now deleted, or edited, are, privately, an avenue into the complicated past of my relationship with Anthony.
When I say rather dramatic things like ‘spectacular love story’ I only mean that it was against all odds – a 41-year-old and an 18-year-old (the beginning), and now (the ending?), a nearly 57-year-old girl/woman sitting in a nursing home with her hands hugged by his nearly 80-year-old fingers.
My recent truthful tidbits have earned me the angst of one family member and, conversely, the support of many others.
I remember, years ago, Elizabeth Jolly speaking to me about one of my short stories:
EJ: This is far too painful, dear. Rewrite it.
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