jmgoyder

wings and things

“Thoughts on hearing loss”

Awhile ago my mother had an epiphany about being deaf. She was at a social occasion and, as usual, finding it very difficult to keep up with the conversations around her. Meg never complains about this despite the fact that, at times, she must get extremely frustrated and even depressed about not being able to hear. Her hearing loss wasn’t gradual; it happened all of a sudden in 2003, just like that! Since then, it has become worse, even with the use of various hearing aides.

I love the following poem that she wrote because it shows the kind of resilience she has, and is a great example of acceptance. With three children, eleven grandchildren, with spouses and partners, four great grandchildren, and one on the way, family occasions are often loud, boisterous and Meg often misses out on any or all of the conversations around her dinner table, even if only a few of us are there. But the poem shows her ability to derive joy anyway:

The Owl
I perch nearby
Look down and see
A nest filled up with hatchlings.
Their beaks are open wide
A thousand feathers flying.
The patient mother drops a worm.
They squawk and flap.
Cacophony of joy.
She drops the next
And bedlam fills the air.
I watch.
I smile.
I share.
I am alone
But
I am there.

 

 

 

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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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Making mistakes

This afternoon, my first niece, Ashtyn, came to visit us in the nursing home. I was holding Anthony’s hand and chatting about the Sydney conference to Ash, unaware that sleepy-looking Anthony was listening intently, especially when I lowered my voice.

You see, I obviously don’t want Ants to know Ming and I are going to be away for a few days because I don’t want him to feel abandoned, so I wasn’t going to tell him. And I didn’t anticipate that he would pick up on my conversation with Ashtyn in any accurate way because just before she arrived he’d asked me to clear away the mess of non-existent champagne glasses on the window ledge.

But, as soon as Ashtyn left, Anthony said, “So why didn’t you tell me you were going to Sydney?”

Sprung! I fumbled around with reasons and excuses and reassurances that it wouldn’t be for ages, all the little lies tucked inside my throat like baby mosquitoes, and it took ages to convince him that I wasn’t leaving him.

Oh well, I have three days before we go, so I will spend as much time as possible with Ants at the nursing home. It was a mistake to talk so openly in front of him about my own plans and I accidentally made him feel excluded – argh.

Another lesson learned.

The thing that saved the situation was when I remarked on how beautiful Ashtyn looked (pregnant with second child) and he said, “She knows how to do it.”

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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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My mother is a poem

My mother, Meg, is 82 and the age itself conjures images of white hair, stooped posture, decrepitude, and yet she defies all of this with her beautiful, generous presence in so many of our lives. She battles deafness, combats macular degeneration of the eyes, and has overcome breast cancer, multiple broken bones, grief and trauma, with the most incredible resilience I have ever seen in another human being.

Not only that, Meg is always willing to listen – even to criticism. She does listening better than anyone I know and her support of her three children, eleven grandchildren, and the so-far four great-grandchildren, is solid and unwavering.

Sometimes she and I get a bit impatient with each other because, even though we are so mutually attuned, we are very different. Meg is impetuous, fast and good at multi-tasking whereas I am cautious, ponderous and sometimes timid. Nevertheless, we share the same heart; we miss the same person (my dad who died so young); and we want the very best for the whole ever-extending family.

Below is my mother’s poem about death:

MARY

Her hand,

a strong but ageing hand,

slipped momentarily through

a curtain made of gossamer,

took hold

of both of mine,

and pulled me through.

Her smile a twinkle

and her voice like

ripples in a stream.

“Come, meet my son.

He’s waiting over there.”

And, arm in arm,

we moved

to His embrace.

My mother, Meg, is 82 and the age itself can often lead to intermittent thoughts and wonderings about death. This poem dispels the fear of death and, for me, breaks through the discomfort of talking about death.

My mother is a poem. We all are.

 

 

 

 

 

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Rollercoaster 2

I will soon be facilitating a carer support group so I guess the last couple of weeks will help. The trauma of seeing Anthony unconscious, then the joy of seeing him okay again, over and over again, especially lately, has absolutely done my head in.

Today, we had a multitude of visitors and it was wonderful – especially when my great-nephew sat on Anthony’s knee! And yet yesterday, Ants was in bed, sleepy-headed and not particularly responsive to visitors.

It is hard to admit these things, but I would like to be honest about how I feel, in the hope that others will be able to relate and not feel guilty. It would not be possible for me to admit these feelings if I didn’t love Anthony so the following observations and questions are addressed to him despite the fact that I can’t speak to him about these things:

  1. Ants, we have never talked about your death or made funeral arrangements, so Ming and I have no idea what you want. We are seeing funeral directors next week with our various questions.
  2. You were like a dead person yesterday, but today you were back! I know you don’t know you are dying and I know you don’t even know you have dementia, but I also know that you know me/us.
  3. Every time, especially lately, that I think you are nearly dead, I get panicky and grief-stricken; then you come good again.
  4. Anthony, the other day, when I had my finger on your pulse, I did actually want you to die. I’m sorry, but you were unconscious anyway and I thought it would be easier.
  5. You are 80, Ants. I know you keep telling me you are 16, and asking where you mum is, and seeing baby Ming in every corner of your room, but then, all of a sudden, you are back in the here-and-now.

There must be a better way of caring for carers and I am very interested in helping in any way I can.

I want Anthony to live.

I want Anthony to die.

 

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To my son, on Mothers’ Day

Tomorrow I will pretend to hold your miniature, wrinkled toes inside my swollen, postnatal fingers in the whiplash of a memory of pain and joy in equal amounts: your birth.

You, like many other babies, wanted to stay safely within the parameters of life and death/inside and outside, but you eventually emerged. After too many hours, you were inducted out of your cubbyhole and splashed into the too-bright-light of a bassinet.

I have never loved anyone as much as you, my wonderful, winged son. Yes, we argue and disagree; yes, we agree and philosophise; yes we occasionally look for walls to punch, shoulders to cry into: yes.

Nothing can ever change the gift of you to us – to Anthony, to me, to the extended family. Thanks for being this gift, for being exactly who you are. We are so proud that you are our son, Ming!

Tomorrow I will pretend to hold your miniature, wrinkled toes inside my swollen, postnatal fingers in the whiplash of a memory of pain and joy in equal amounts: your life.

 

 

 

 

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Back to the birds!

I was going to write something poignant, but I am too fascinated by why these two pigeoney-dovey-looking birds keep rejecting my offerings. For ages they have been visiting two fence posts just outside my front window. So I left crumbs (which a clever crow immediately took), then I put nuts out on the top of those two particular fence posts.

During the night it rained so I guess the nuts are now a bit soggy. The two pigeon-dovey-looking birds seem almost to be afraid of my strange offering. I will have to be more subtle and I am not gifted with subtlety ha!

It is such a great relief to let go of the poignancy, to charge my camera’s battery again, to watch the birds from my front window – the most beautiful view – or just to sit on the front veranda watching the sky’s birds at near-dusk.

 

 

 

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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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The beautiful babies

My mother invited me for lunch today at her house because my first niece, her husband and ten-month-old baby would be there. Here is a photo of him with me; he is my first great-nephew.

IMG_0817Two days ago my second great-nephew was born to my second nephew and wife. He, the baby, joins his two-year-old sister (my first great-niece); and my first nephew’s partner is expecting their child soon!

I’m sorry if this sounds complicated but my two brothers have five children each and, despite wanting to shout out the joy, I am very aware of their privacy. My oldest brother is now grandfather to three and my youngest brother is on the brink of being a grandfather for the first time.

Anyway, today my lunch offering consisted a couple of Dvds that Ming had recently arranged to be converted from old videos. In one of them, there was Ming at the exact same age as the schnookums you see above, bearing a remarkable resemblance.

In Anthony’s family, there were many more siblings, hence many more nieces, nephews, great-nieces and great-nephews, and an assortment of cousins, second-cousins, third-cousins … so it is sometimes very difficult for me to remember who is whom. On the other hand, I keep in touch with at least one person in each of his sibling’s families, sharing a reciprocal fondness for those who either visit Ants and/or support me (and Ming of course).

And to the little prince born the other day … Welcome!

 

 

 

 

 

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