jmgoyder

wings and things

Afterthoughts

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Every time I think I want a blog break, I suddenly want to blog again. Go figure. Yesterday’s post was so negative it left me feeling uncomfortable and I woke up this morning thinking “Pull yourself together, Julie! Stop moaning! Get on with life! Smell the roses! Enough of your whimpering! You are boring the hell out of people! You know what to do to feel better, so do it!”

The above photo is of my mother at a place called Canal Rocks which is about an hour’s drive south of here. We were away for a couple of days, celebrating her 83rd birthday and every moment was a delight. We ate out, we ate in, we walked through the magnificent gardens of the place where we were staying,  and I went for a couple of long solo walks through the bush and down to the beach. I took my blender and made us raspberry and mint ‘cocktails’. We watched movies, read our books, and I began a new writing project. It was wonderful fun and so refreshing.

But coming back home was not so wonderful despite how great it was to see Ming and the dogs. I wasn’t expecting to feel so flat so my sudden change of mood surprised me and I wanted to go straight back down south. The dull ache followed me into today and I know for sure that writing that pessimistic post yesterday has done nothing to help. I want to delete it (as I often do) but I’m leaving it there as a contrast to what I’m about to write here.

I have discovered so many strategies to help with my grief: cooking inventive recipes, watching comedies, writing in a different genre, reading about topics I’ve never read about before, making cocktails, socialising and catching up with old friends, talking things through with Ming, going for long walks, meditating, looking for an interesting new job, picking flowers from the garden, communing with the dogs, relaxing guiltlessly, and so on. The constant impulses to go and see Anthony in the nursing home, before remembering with a jolt, that he isn’t there anymore, are lessening and so are the nightmares.

I don’t want to write about my grief anymore but I probably will. Instead, I want to write about all of the good things – the wonder of my many friendships; my beautiful ever-extending family (my niece has just had her second baby); the brilliance of my marriage; my funny, wise son; the recipe book I might write; the jigsaw I might buy; the volunteer work I will soon resume; the hilarious moments of life; the dialogues with Anthony that I haven’t written about yet; the beautiful farm where I live; going out for breakfast or lunch; and even the possibility of travelling further afield than I have been able to for years because I was always afraid Anthony might die in my absence. Recently I was able to visit my brother and his family who live four hours south of here and stayed three nights.

The gratitude I have for all of these many things is huge and is actually a lot bigger than my grief and, yes, I am curious about this new life I am embarking on without Anthony’s physical presence. I carry his photo in the back pocket of my jeans everywhere I go and this is a source of strange comfort, and most of my memories are full of joy. And despite what I wrote yesterday about my regrets, I do realise that I did my best.

C.S. Lewis said that grief is a lot like fear and this is so true, and fear is a monster of a thing but somewhere in the Bible it is said that perfect love casts out fear, and this is also true. Someone else said that grief is love with nowhere to go and, even though I understand this, I’m not sure if I agree entirely because I still love Anthony and this is how I am tackling the fear monster.

Ah – I feel better already!

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The un-final scene

Several hours before Anthony died, we were all there – relatives, hospital staff, friends, nursing home staff, my mother, Ming, his partner….

…. and all of the people, including me, even including the doctor-on-call, and our own doctor, who didn’t know know Ants was dead until death.

When our doctor arrived, I threw myself into his arms in a hug of despair and grief. He accomodated this hug and proceeded into the room where he confirmed that Anthony was really dead.

I did go back into Anthony’s room several times and touched his face. I didn’t scream but I did sob because the shock was so terrible because Anthony’s death was so quick. For a year or so, I had been trying to prepare myself for this inevitability; after all, Ants had had numerous TIAs (mini-strokes) and had become bed-ridden.

The un-final scene of this kind of experience is a kind of bedlam of regret: why wasn’t I kinder, more creative, more caring, more understanding, more able to listen?

I really want to make a difference somehow but atm can’t even be bothered reading or writing blogposts – too sad. I really appreciate comments and feedback but please understand that I need a bit of time to get my heart back.

Because …. I don’t know anymore; it was an un-final scene, a mysterious legacy, the most beautiful man in the world of kindness, forgiveness, generosity. I wanted to smash the people and illnesses that attacked him but he wouldn’t let me; he just wanted peace.

Perhaps that is what bewilders me most; there was no warning that this would be our final scene, Ants, and that’s why I will continue to explore the idea of our un-final scene.

 

 

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Hope

I wrote about hope yesterday in such a hopeless way that I deleted the post and now can’t remember what I wrote anyway. After a couple of days, including this morning, of feeling a sense of absolute hopelessness, I read a few blogs and articles and have regained a sense of hope and purpose.

Ming has an extraordinary capacity to reassure and comfort me in my grief and, whenever I am crying, he says, “Keep crying, Mum, and I will keep hugging you; stop trying to stop crying!”

Nevertheless, I am sick and tired of my own grief. Anthony is dead and I have to move willingly into a new world without him. The “look after yourself, Julie” advice given to me over many years, from many friends, finally seems sensible to me now – pragmatic and even useful. Who knows?

I don’t think that hope just happens automatically, and I don’t believe that hope is genetic; I think hope is something that we, ourselves, create if we are willing to do so.

So many people, in so many circumstances – much worse than my own simple grief of losing my elderly husband – have created their own hope and I really want to be part of that somehow.

Hope

 

 

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Ten weeks

It’s ten weeks since Anthony died and, in a few hours, it will be exactly ten weeks, including hours and minutes. I know it was evening but my memory of that moment of death, when I was out of his room, is blurry. I was outside with Ming and Amber and, when the nurse came out to say he was gone I thought she meant the doctor had gone.

Many people assume that once someone goes into a nursing home, it is the beginning of the end of a relationship but not for us. Most situations like this are between child and parent and, yes, in terms of age, Anthony could have been my parent but he was my spouse. Of course I understand the heart-break of losing a parent, but losing a spouse is, I think, a special category of loss.

I am so lucky to have had such an amazing marriage. I didn’t realise this until many of my friends’ marriages collapsed and became complicated and unsaveable. The enormity of our love (Anthony’s and mine) only strikes me now, in retrospect and I wish I had appreciated it more when he was still alive.

When the doctor said it might be days, not weeks, I steeled myself for Anthony’s impending death, never, ever thinking it might just be minutes. So the shock is still fresh and raw and uncomfortable and my dreams are full of better-and-worse scenarios.

Time is the best, and most obvious, healer and I am learning how to just wait for time to pass. I really want to function normally again, to get a job, to cook good food, to stop crying because I don’t want this 10-week thing to hit me again and again and again.

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Dementia’s grief

Despite the fact that I am plodding rather clumsily through my grief about Anthony’s death, I still retain a fascination with Dementia and its impact on those who have it. So, yeah, it isn’t just about me and my own grief; of course not!

It has only just struck me now that Anthony’s increasing confusion over the last several years was exacerbated by his grief about this confusion. He never seemed to know he was confused because the dementia was so gradual and, again, I think this was a blessing. However, there were times when he did understand that something was wrong.  I always reassured him of course but every now and then he would give me ‘the look’ as if to say, “do you think I am stupid, Jules?”

The love, longing and anxiety I have felt for so many years now was probably exactly the same for Ants but he had forgotten how to express it. He was as lonely for me as I was for him; after all, we had known and loved each other for 40 years.

My point here is that people with dementia are not just ‘people with dementia’. In other words, there is a whole swirling, twirling world of emotions and experiences that preceded the dreaded diagnosis.

Anthony’s grief on entry to the nursing home was palpable and it nearly destroyed us emotionally, but we did get through this heart-breaking decision all those years ago. Ming barely remembers as it was the same week he had his first surgery for scoliosis.

But Anthony put Ming’s health first and I will always be grateful for how he knowingly sacrificed his own emotional well-being for the sake of Ming. Despite being in the early stages of Dementia, Ants did know that respite in the nursing home might evolve into permanent care, which is exactly what happened.

I can hardly bear to think about how grief-stricken Anthony must have been at the time, despite his dementia-induced confusion.

And I think it is worth re-emphasising here that people with dementia also suffer grief.

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Resurrecting the place that was Anthony’s

Using the past tense about anything to do with Anthony, and this home, is still very strange for me, even though it had become impossible to bring him home for a few years.

During the week that Anthony died, the electricity went AWOL and we had to have the whole place rewired by electricians who were amazed that Ming and I hadn’t already been electrocuted by 100-year-old wiring to the house and shed. The wiring in the roof and walls was so ancient that it was, apparently, incredible that the whole place didn’t catch on fire.

Black humour alert: Ming and I might have died in a fire, or by electrocution, during the same week that Anthony died.

Okay, so obviously that didn’t happen as Ming and I are still here, thankfully. But the electrical situation did make me wonder. Did our previous (now retired) electrician warn Anthony and did Anthony (with encroaching dementia), just forget about this danger? Or did Anthony, being frugal, decide to ignore the possible warnings in order to save money?

I will never know the answers to these questions but I do know that Anthony would never, knowingly, have put Ming and me in any sort of danger.

In the days before and after Anthony died, Ming and I had to arrange for the house and sheds to be re-wired, mainly because we had no electricity. Simultaneously, our ancient electric stove finally died, and then our washing machine, both of which we did without until I had a bit of a meltdown and now we have a new stove and washing machine.

If Anthony were still alive I would have had a heated argument with him about him being such a tight-arse about money, and saving, and spending. Ten years ago, I would have berated him, he would apologise, and then we would make up with little Ming catapulting himself onto Anthony’s lap and then mine, like some sort of bouncy Pokémon.

Do I have a bit of residual resentment even though my beautiful husband is now dead? Yes, I do. He could have done all of it better; he wasn’t perfect; he had this strange loyalty to people, including family, some of whom treated him badly; he was nervous; he was a 57-year-old newlywed married to a woman 23-years younger – me.

Anthony was never the perfect husband, just as I was never the perfect wife, but we both determined to get through all of the many hurdles and survive. We were absolutely dedicated to each other and to our son, Ming, and that is why, in the wake of Anthony’s death, this place will be resurrected.

 

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Dreaming about death

Ever since Anthony died, 8.5 weeks ago, I have had dreadful dreams, nightmares really. I’m sure this is normal when someone who has been dying very slowly, over many years, from many diseases, actually does die.

It was so fast! Even in retrospect, the suddenness of Anthony’s death still shocks me. How did I not see this coming after years, months, weeks, days, hours, then minutes? I was prepared to stay at the nursing home, sleeping in the armchair next to his bed; I even had my pyjamas with me. I thought it would be a few days but I wasn’t sure.

The first dream was terrible – a nightmare really – Ants was in the hospital and they were cutting him open to find a reason. Thankfully, this nightmare hasn’t recurred.

But there is a persistent dream that repeats itself over and over in which I go to the nursing home to visit Anthony and am told that he died. So I visit the person who is in Anthony’s room but that person is never there and the room is always empty. So I sit, waiting, in that room, until the staff force me to leave. They are gentle but firm with me and I am told not to come back.

I wish I could stop/prevent having both of these dreams but it just happens! Visiting the various people (residents and staff) at the nursing home has become impossible for the time being because I am just not strong enough.

This grief has the solidity of mud and fairy-floss – gentle, violent, an impossible paradox. With all my heart, I just wish I could have had a few more days with this beautiful man.

 

 

 

 

 

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Hard work

It is hard to work through the grief of losing a loved one. In and of itself, this is difficult and it becomes quite confronting sometimes, to say the words, “He died.”

As a volunteer for Alzheimer’s WA, I was asked to give a talk at a ‘caring for the carer’ morning tea on Monday. I took Ming and Meg with me and Ming and I presented together. Nobody knew us, so nobody knew that Anthony had died so, as I began to speak, I also began to cry as I said those words, “my husband died recently.” Ming took over as I tried to control my tears and I recovered quickly. Then we delivered our talk.

Today, as a volunteer for Red Cross, I attended a luncheon for carers and, again, Ming accompanied me. It was a lovely experience but, once again, I was asked a few times about my own situation and had to admit that my husband had died recently.

Every time I say those words I am so glad for the massive sunglasses I wear because they disguise the tears to some extent. Of course there is nothing wrong with tears but it’s still embarrassing.

Then, last week, I was interviewed on our local ABC radio station, about Anthony’s dementia and his death. Ming didn’t accompany me as he was working (he works at a restaurant), so I did it on my own and I spoke calmly and didn’t cry.

I feel very strongly about dementia care and am passionate about the importance of listening to people with dementia, and about going with the flow of their conversations, no matter how muddled. Anthony’s conversations with me, with Ming, and with Meg and others were meaningful even if they didn’t make sense in the usual way. These dementia dialogues were important, valuable, and full of love and humour – worthwhile!

The hard work now is to convince people of this, to convince people that the person with dementia isn’t dead and gone, to convince people to keep visiting that person even is she or he is in a nursing home and appears to be unresponsive.

The importance of this kind of hard work can’t be measured because it is too beautiful.

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Anthony antics

Apart from tossing my hand aside occasionally, Anthony would often come out with the most extraordinarily apt one-liners.

I found some of my scribbled renditions of these today when Meg (my mother) helped me sort through a few boxes of mixed up paperwork – everything from tax receipts to sympathy cards to my scribbles. One of the jobs I had been avoiding was to ring the ambulance people to get a refund on the ambulance ride to the hospital from the nursing home, and the ride back. The ambulance woman on the other end of the phone promised a refund after establishing that Ants had died. Her voice softened and she offered her condolences. This made me cry, of course and, if Meg hadn’t been here, I would have given up on the rest of the paperwork.

Anyway, in amongst my scribbled notes, I found a gem:

Me: Are you okay, Ants?

Anthony: I’ve been having an argument with my ego, Jules.

 

 

 

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An ‘aha’ moment

Since Anthony died, I have, of course, experienced all of the stuff I’ve already described – the emotions, confusion and shock. But, over the last week or so, I’ve also been bothered terribly by my struggle to figure the grief out. For example, I couldn’t understand why, when I was feeling more at peace, all of a sudden it felt horrible again, really horrible.

Why did the bouts of sad, wretched sobbing keep coming back when I had already accepted that Anthony was dead?

I suddenly remembered the 23rd Psalm and that line “even thought I walk through the valley of the shadow of death” got to me. To be in a valley, and also under a shadow, is like being in some sort of dark, inescapable horror movie scenario where there is no escape. But the psalm does continue to say that “I am with you” and that is comforting.

And then it hit me: I haven’t just lost my beautiful husband, I have also lost my identity as his wife, i.e. my wifedom is gone. Yes, of course I am still a mother, daughter, sister, cousin, auntie, friend, but I am no longer a wife. And, over the last several years of Anthony’s illnesses, this wifedom had become an absolute priority – a purpose even.

It has come as a bit of a relief to have figured out why the grief over the death of a loved one is so ferocious, unpredictable and relentless. Not only have you lost that loved one to death, you have also lost your identity as his/her someone. So in a way, you lose some of your own self.

A sense of identity is one of the most vital human needs so when you lose a big chunk of it (as millions of us have, of course), the job of grieving becomes terribly complicated and difficult. Recovery seems impossible at times. Outside you there is this gap that the person you loved left, and inside you there is this gap that used to be the ‘you’ who loved him/her.

Understanding this helps me to accept that this is a brand new situation, a new experience, a new way of living. I can either look at it as an adventure and become curious, or I can deliberately refuse the notion of new. I choose the former and am even getting a bit excited about it.

I think Anthony would approve.

 

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