jmgoyder

wings and things

The dream

I have various versions of the same dream about once a week. It’s always some sort of party, or wedding, or get-together but the venues change from dream to dream. The ‘characters’ in these dreams usually include old friends, close relatives and always Ming, but he is often either a baby or child.

In each of these weekly dreams, Anthony is extremely incapacitated and in a wheelchair; the destination is hours away from the safety of the nursing home; and it’s only when we get there that I realise I have forgotten his medications for Parkinson’s Disease (the timing of which is vital).

So, in each of the dreams, I am either searching my handbag for a stray pill, or trying to decide whether to drive all the way back to the nursing home. I am totally panicked and trying to figure out who can help me get Anthony from his wheelchair out to the car, but people are milling around him, happy to see him but concerned about him being in a wheelchair etc.

Because this is a dream I am, of course, leaping tall buildings and smashing windows and unlocking safes in my frantic search for Anthony’s pills – all to no avail. So I get back to the party, or whatever it is, and am relieved to see that Ants isn’t slumped too badly in his wheelchair. I rush to him and kneel, apologising for forgetting his medications and all of a sudden he gets up and is fine – robust, loud, laughing and hugging me as if the whole thing was some sort of bizarre practical joke. The relief that washes over me in the dream is so wonderful that it wakes me up.

So, when I wake up, it takes me about a minute to get my bearings and realise it was a dream but it never makes me sad. Instead, this recurring dream gives me enormous joy because it reminds me in so many ways how fantastic our life together has been.

I hope I get that dream again tonight.

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New kid on the block (and the reason I haven’t been blogging lately)

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Well, here she is – Pip – a miniature schnauzer who is just eight weeks old. Once she has had her next vaccinations, I will be able to take her with me to see Anthony and other people.

The story behind her name: years before Anthony and I were married, I lived in a little cottage a few kilometres from his farm. I was undertaking my first year of university studies and feeling, I guess, a bit isolated. I was also suffering a severe case of ongoing unrequited love for this beautiful but idiotic older man who, instead of proposing, bought me a miniature dachshund puppy that we called Pip.

That Pip was the most beautiful gift, and the best friend I had ever had until she died many years later.

I was recently reminded (via a photo) of the special bond I had with that first Pip and how her company helped me through doing all of those assignments in that small cottage all alone. I was only in my 20s then and terribly naïve; I couldn’t understand why Anthony didn’t love me back. It is only in retrospect that I realise how taboo it would have been for him, a middle-aged farmer, to contemplate a romance with me.

So, instead, he gave me Pip.

And now we have a new Pip and I am, once again, not alone.

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Dress rehearsal

It’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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Galah!

Today 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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Contentment

I think that contentment is underrated. Anthony has always had it, and Ming has it too, whereas I have always struggled.

Lately, Anthony makes me feel the most wonderful calm; he is so accepting of what is (a huge lesson to me). Ming drops in between restaurant shifts and we all have a bit of a laugh at whatever show is on TV.

Today, after Ming left, this was my conversation with Anthony:

Me: We are all so lucky in our relationship with each other, Ants!

Anthony: Yes, we don’t seem to be losing any hours.

When I think about his words, I feel content.

 

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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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Asthma 2

Okay so  six days ago I found the prednisolone  tablets I had last taken in 2013. Back then, I wrote some notes about how to combat an asthma attack with what is sometimes called a “steroid burst.” My instructions to myself were to take 100 mgs per day for five days then stop so that my body’s immunity could kick in. It is now day 6 and I know that in a couple of days I will be okay again; in fact I already feel okay – phew!

My instructions to myself also included things about not panicking, not re-living my childhood asthma, not worrying my friends and family unduly, not giving into fear and, importantly, getting fit and healthy again.

When Ming said to me the other day, “when will we not be sad, Mum?” I didn’t have an answer. I scrambled in my mind for an answer but couldn’t find one. I suddenly realised how my sorrow and grief about Anthony’s slow demise was affecting Ming. And I stopped breathing normally; hence the asthma?

This 22-year-old son of ours is the reason I am once again breathing normally; the asthma is gone; we have talked things through. I no longer need the prednisolone ….

I just need Ming.

 

 

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Once upon a time 7

He took me out for dinner. This had never happened to me before – this ‘out for dinner’ thing. It was at a place called Eagle Towers (which was, a decade-or-so later, the venue we chose for our small wedding reception).

I don’t quite remember which ‘goodbye’ this was but I think it must have been the first because I was so shy and ecstatic that this gorgeous man was taking me on a ‘date’! I was about to go somewhere; I think it was Sydney, but it might have been up north, or Europe.

We had a beautiful meal and he ordered a half bottle of champagne. I was shy, overjoyed, transparently in love; he was funny, loving, respectful of my youth, encouraging of my adolescent ambitions.

I wanted him to ask me to stay. I wanted him to say “please don’t go, Jules” and maybe he would have said this if it hadn’t been for the fact that he didn’t have enough money to pay for our dinner.

It was $42 and he only had $41 (I remember this so vividly!)

He drove me back to my parents’ house, walked me to the back door, hugged me fiercely and said, “Why do you have to go, Jules?”

 

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“Ming the Merciless”

During Ming’s last year at high school, all of the kids were allowed to imprint on their grammar school jackets an emblem or phrase that represented who they were. Ming chose “Ming the Merciless”.

And that he is! This week, he mercilessly told me some home truths about how my sadness about Anthony affects him. This has been followed by many lengthy philosophical conversations about a whole lot of topics including life, death, love, loss, grief, acceptance. Occasionally he and I have cried together about our different heartbreaks, comforted each other by just listening, and made plans to get out of our individual ruts.

Ming is not merciless at all. He is the kindest person I have ever known and the way he cares so much about me, and Ants too, is extraordinary in its depth. I think back to all of those nights when Ming slept in the bed next to Anthony’s in order to give me a break from what we called ‘the night shifts’ and I am so grateful for his help, patience, love and comfort.

Now, at 22, this child/man of ours is, understandably, a bit tired of both Anthony and me, but he cares so much that he doesn’t ever want to leave the farm. He gets a lot of peer pressure to ‘get out there’ but he wants to stay put for the time being, work as a waiter, earn some money, and be here for both Ants and me.

And, no matter how many times I tell him that we don’t want him trapped into feeling he has to be here for us, he just reiterates that he loves this home, that he doesn’t want to go anywhere at the moment, that he is content.

Ming is so much like Anthony in this way; Ants knew how to go with the flow, work hard and he had no delusions; he was content with, and proud of, life as a dedicated dairy farmer despite the changes that wreaked havoc with the industry many year ago. I have always admired Anthony’s lackadaisical attitude to life and work and his acceptance of every single ‘whatever’. Ming has this capacity too but he is merciless against himself!

I am so proud of this amazing son of ours – Ming the Merciless!

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Communicating with Anthony

It is sometimes difficult for me to explain to family, friends and staff about how best to communicate with Anthony now that he has become so silent. So it was refreshing yesterday to have one of the carers tell me that she had learned how important it was to explain to Ants that they were taking him to the toilet or shower etc. and sometimes using the hoist.

“If we explain to him first, everything goes smoothly,” she said; “but if we don’t, he resists.” I told her how grateful I was for this understanding, remembering the times, a couple of years ago, when the use of the hoist terrified him – late night phone-calls from the nursing home in which I had to calm him down and reassure him that he wasn’t being captured by pirates and put into a torture chamber.

Thankfully, these kind of hallucinatory panic attacks were fairly short-lived and now that Ants is less ambulant, the hoist is used often to transfer him from one place to another. As far as I know, this no longer causes fear for him.

Verbally, Anthony is very slow to respond (both cognitively and vocally) so you need to sit close enough to touch him, or give him a ‘nosy’ (nose kiss), or yell nonsense, all of which Ming and I did this afternoon. And Anthony smiled many times, especially at Ming’s antics and asking, at one point, who the ‘bloke’ was.

Me: I am NOT  a bloke, Ants!

Anthony: Oh.

Me: It’s me – your wife!

Anthony: Yes, it is.

Okay so we are now into the fifth year of Anthony’s life in the nursing home and I am continually gobsmacked at how he continues to survive advanced prostate cancer, liver disease and PDD (Parkinson’s disease dementia). He is definitely way past his ‘used-by’ date but, as he isn’t in physical pain, I don’t worry as much; not only that – he is always positive, always accepting, always answering the ‘how-are-you?’ question with a whispered ‘fighting fit.’

 

 

 

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