jmgoyder

wings and things

Always check the weather forecast before waxing lyrical about the sunrise!

This morning I was awoken at 5 by my alarm and the sound of pouring rain and ferocious wind. I peeked out the window into the misty grey but couldn’t see any sign of the sunrise. So I went back to bed!

Today is Father’s Day so Ming and I went into the nursing home before lunch with our presents. Mine was a dozen oysters (which I picked up from the markets on the way in) and the DVD cooking series, Two Fat Ladies, which Anthony, Ming and I used to love watching. Ming’s gift was the English series, Doc Martin, and a bottle of champagne.

The oysters were a great hit:

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Anthony finished the whole lot in about two minutes!

My mother came in after church and helped us snack on crackers and some special cheeses I’d bought, with olives, cherry tomatoes and baby cucumber, then Ming arrived and gave Anthony the presents which were also a hit. A bit later, we played some of the DVDs and cracked the champagne but Ants only had a couple of sips before falling asleep in his chair. My mother had gone home by then and eventually Ming left.

After that, I tidied and washed up the various plates and cutlery I keep in one of Anthony’s cupboards, then sat down to watch another episode of Two Fat Ladies with him, but he continued to sleep and, all of a sudden, I felt terribly flat and just wanted to come home to Ming, so I did. But Ming has now retired to his shed for the night and I am coming to terms with the fact that I am somewhat redundant in his life – perfectly normal of course but still hard.

When Anthony wakes up will he wonder where I am after the frivolity of this morning? I told his favourite nurse, Denise, that this is the first time I have left without saying goodbye but I didn’t want to wake him as he looked so peaceful, so she said she would tell him.

All of a sudden, even though he has been on my mind all day, I am consumed by the remembered agony of losing my father suddenly to a heart attack when I was nineteen and my younger brothers were seventeen and fifteen. Those brothers have become the most amazing dads to their children (five each!) I bet they think, with my mother, of our Dad today. He was a generous, beautiful gentleman.

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Anyway, back to the sunrise fiasco – I am just going to check the weather forecast for tomorrow ….

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Reunion

I have decided that it is way too long since I have met up with someone who I used to be closer to, but have lost touch with. This is entirely my fault, as she is always there, no matter what.

Tomorrow, my plan is to surprise her; my alarm is set for 5am so that I can catch a few moments with her before she goes on her daily journey. I hope she will remember me and the good times we used to have. I hope she will say yes to me when I ask if we can be friends again.

Her name is sunrise.

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I went to a funeral today

Martin was 90 and his room was two rooms away from Anthony’s. He died a few days ago and I went, with my mother and one of the carers, to the funeral service at the Catholic cathedral today. After the service I was able to give Ruth, Martin’s wife, and three of his daughters, a series of quick hugs before withdrawing from their private grief. Ruth and I have formed a friendship borne of mutual care and grief over the endless months of our husbands’ deterioration so, even though it sounds selfish, I am not sure how to go on without Ruth’s visits to Anthony’s room. Already, there is someone else in Martin’s room and, even though I had just been to his funeral, I caught myself just about to wave goodbye to him – as I have done every afternoon/evening on my way out. Martin’s ‘gone-ness’ has been so swift.

This morning, as I psyched myself up not to cry at the funeral, I checked my emails and discovered that my blog friend, Bill, had died from COPD. The shock of it was terrible. His friendship, humor and rapport had blessed me for over a year. Here is his last, heroic post: http://dealingwithcopd.wordpress.com/2014/08/29/how-i-feel-for-the-week-ending-08-29-14/

Then, hesitantly, I opened another email about another blog friend, Rhonda, and my heart did a somersault of dread as I read that she, too, had died. Jennifer’s post here honors Rhonda beautifully in a way that respects the horror of this tragedy. http://jenniferkellandperry.wordpress.com/ Jennifer’s post provides links to Rhonda’s blog.

My heart goes out to all of those who have been left grief-stricken by the death of their loved ones.

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“Just around the corner….”

Lately, Anthony has been asking me more and more frequently where his mother is, and sometimes he asks me to ring her. Mostly I evade the question or just say that she is busy cooking, but the other day I ventured, “She’s gone, remember?” This truth made him sad and quiet for some time and then he was a bit embarrassed for having forgotten.

One of the best things about this nursing home is its meals. Lunch is often a roast served up in much the same way as many of the elderly residents remember their mother’s offerings. The photo below shows Anthony’s meal the other day before he demolished it – roast beef, potatoes and pumpkin, with cauliflower gratin, peas and gravy.

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Last week, my mother, brother, niece, Ming and I attended the funeral of one of our oldest and most special friends, V, a woman who first taught me to drink from a straw when I was little, and for whom Anthony had a lovely affinity. My funniest memory is of V staying here on the farm one night and 4-year-old Ming (who used to sleepwalk) clambering into bed with her in the early hours and cuddling her nose into the wall. I remember getting up and not being able to find him until I discovered him fast asleep with his little body curved around V who looked a little alarmed! To V’s sons, siblings and family, your mother was a legend.

Yesterday, I attended the annual memorial service at Anthony’s nursing home. I dumped my bag in Anthony’s room, gave him a quick kiss and explained that I was going into the next section to pay my respects and volunteer as helper in the serving of tea and coffee, cleaning up etc. He wanted to come with me until I told him it would be like a church service! Once I was seated and reading through the list of people who had died, I was shocked to find that there were 18 because I only knew of two, J and A. J was in the room next door to Anthony’s for over a year, and A was a beautiful, tiny woman who used to get great pleasure from holding the dolls that look like real babies. The fact that 16 other people had died in different sections of the nursing home during the past year jolted me and, looking around the room, I spotted J’s wife and her tear-filled eyes blinked at mine, anticipating the hug that we would share later.

After the service (in volunteer mode), I helped Ev (my volunteer ‘boss’), to rearrange the room into a cafe whilst, out on the lawn, the people who had lost someone released balloons filled with wattle seeds and helium. On the small crowd’s return, on walkers, in wheelchairs, on foot, I served tea and coffee, made friends with a few residents and volunteers I’d never met before, gave hugs where it seemed acceptable, and pinpointed T, J’s widow, to give her my sympathy. After all, she and I had been visiting our husbands at around the same time every day for a year. But her red-rimmed eyes eventually dismissed me and I moved away to help Ev with the clearing up of cups and saucers, tables and chairs. Once all of that was done, Ev thanked me and said I could go back to Anthony, so I did.

But, just seconds later, I was told by the nurse-in-charge that M, a 91-year-old man two rooms down from Anthony’s, had died in the night. Two days previous, I had hugged R, M’s wife, when she told me that M had pneumonia and I had just begun to, shyly, befriend the many members of this family and learn all of their names. Now that M is gone, I may never see R and the family again and yesterday afternoon, when they all came to clear out M’s room, I was very careful to keep a distance, to just speak to one of M’s daughters before withdrawing into Anthony’s room, closing the door and crying in his bathroom.

A bit later, Anthony hugged my grief away enough for me to be normal, even jovial, but the experience of losing this many people I cared about in such a relatively short space of time is difficult.

I remember so well the day that Anthony’s mother, ‘Gar’, died because I was with her, in the hospital, 33 years ago. She and my father died within less than a year of each other and, at the time, my teenage heart didn’t cope very well with losing two such enormously important mentors and the grief was unbearable.

But now, with the benefit of an additional 30ish years of hindsight, insight and love, I think that next time Anthony asks where his mother is I will say, “Just around the corner, Ants.”

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Dementia and deception

For several weeks now, I have been leaving the nursing home at around 5.30pm after helping Ants with his dinner. I turn the television to the ABC news, draw the curtains, make sure the air conditioner is on to the heat setting, rearrange the blankets on his legs, and give him a hug and a kiss and say,

“I just have to do some grocery shopping, but I’ll be back later, Ants, okay? Do you want me to get some chocolate? Yes? See you soon then. I love you.”

And then I go home with my heart thudding LIAR!

So why am I lying? Because, now that Anthony is in the throes of PDD (Parkinson’s disease dementia), the lie that I am coming back soon, when I am actually going home, is much kinder than wrestling verbally, and emotionally, with him about why I can no longer bring him home.

If I say, “I’ll be back soon”, I don’t have to say, “You are too heavy for me to manage at home.” And I don’t have to see his eyes go sad. Instead, he smiles and hugs me and says “Don’t be long, Jules”.

Tonight I told the evening nurse-in-charge about my new method of leaving Ants and she gave me the thumbs up and said, “Sometimes, in cases of dementia, a white lie is kinder.”

“Yes, but when I say to him that I’ll be back and I don’t actually come back, does he get distressed and ask for me?”

“No”, she said, “we just put him to bed and he is fine.”

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And on a lighter note!

Last week Ming got his driver’s licence back. He had to do a written and a practical driving test and the very next day we went up to Perth to collect the little second-hand Toyota Yaris (he has christened it “Fran”) that he had arranged to buy with his savings. Obviously our insurance claim on his ute/truck didn’t pay, but even if it had, Ming never wants another ute again so someone bought it for parts and towed it away earlier in the month. The sight of it out in the back yard, for all of these past months, is not something I will miss although it still has a kind of ghostly presence there, slowly fading.

Ming felt there was one last thing he had to do (to move on, I guess) and that was to go back to the site of the accident and remove his P-plate from the tree he’d crashed into. After the accident it had been stuck up high on the tree and we were never sure if the police or insurance people did this to mark the spot for further investigation, or if it was just someone being nasty. In any case, yesterday, Ming took our old ute and a ladder up there and removed the P-plate. He also found bits of debris from the crash so he removed those too and brought them home to be taken to the dump.

Having regained his independence, the angry Ming of the last few months seems to have disappeared and the angelic Ming has returned – haha! In a way I guess we have now come full circle in the sense that he was a newly licenced driver when the accident occurred and now he is again a newly licenced driver but with an older head on his shoulders. So that is that. Or is it?

Naively, I had thought that once Ming got a car and his independence back, there would somehow be a feeling of closure (for me, I mean), but I relapsed last week into some of the feelings described in the last two posts. The closest I can get to describing this is to liken it to waking up just before a nightmare has come to its conclusion, so you never get to “The End”, and you don’t get that phew of relief that it was only a nightmare. Perhaps the notion of closure is a myth we have invented in order to make things neat and tidy again after a traumatic experience. Perhaps it is living with and beyond the absence of closure that makes people stronger, wiser, even kinder. I don’t know.

What I do know, however, is that I have never seen anything as funny as big, tall Ming folding himself into little, tiny “Fran”!

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Beware of the dog: a cautionary tale

I wrote about the accident yesterday, naively thinking that if I regurgitated the stones in my throat, it might be possible to reach a place of calm, cathartic peace. How stupid was that!

The dog was here, again, its initial growl sounding like a lullaby until, once I had written my words down, it began to bark madly as if I had done/said something wrong. So I edited what I had written until the dog swallowed my extra words, until it attacked my thumping heart and painted it red with slices of stillness, until it put its big paw against my throat and whined until I woke up.

Jet black, this dog blends into the evening sky invisibly, sleeps in the pocket of the dark blankets around my feet at night, wakes me up every morning with the audacity of its sudden absence – not my best friend, not my worst enemy, but my closest companion.

Of course I hate the presence of this black dog, and its black eyes, and its black waving tail, and the black fur of its snuggly black snout but recently I have noticed the growing yawn of its absence. Hurray!

That dog was blocking out the sun with its big, dark presence, its ridiculous attempt to be a metaphor, its wolfish editorial antics. Beware of the dog.

I wrote about the accident yesterday, naively thinking that if I regurgitated the stones in my throat, it might be possible to reach a place of calm, cathartic peace. How wonderful was that!

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PTSD

It seems a bit obvious to say that once a disease, or a disorder, has been named, even acronymmed, it exists as a real, recognized condition. For me, this has become an inviolable truth.

PTSD stands for post-traumatic stress disorder and it affects, in horrible ways, those who have been victims of wars, violent crimes, child abuse, terminal illness, and accidents (to name just a few).

When people come out of an experience where they could have died, but didn’t; where they could have been permanently injured, but recovered, there is an unspoken expectation that rejoicing is the correct response.

But is doesn’t happen like that. I wish it did, but it doesn’t.

When my son’s car accident injured four of his cousins and a friend last October, it altered the microcosm of our family world in ways that have been profoundly good, profoundly bad and sometimes a strange mix.

Naively, I thought/hoped that once the children had recovered from their injuries, once the court case was over, once we all forgave each other for allowing that joyride, everything would go back to normal.

But it wasn’t that simple. One mother was in another country that night and had to hear the news on the phone; I was busy in the kitchen and didn’t know my son had taken the kids for a ride; everyone else was outside on the front veranda, drinking, eating, talking and having fun. At some stage, the joyride was casually approved, ignored, disapproved, cajoled, forbidden, unnoticed ….

….until the phone-call: “Mum, I’ve had an accident – everyone is alive.”

I thought he was kidding; I thought he was in his shed with the kids; I even laughed at what I thought was a joke – until I realized. And that was when the rest of us got into our cars and raced off before we even knew where the accident had happened. On the phone, my son had told me the road (just around the corner), but my mind went to mush and I ended up on a nearby gravel road and rang a friend, sobbing, terrified, and she went straight to the accident scene to join my brothers and I went home to tell my mother and sister-in-law.

I found the two women frantic so we then went straight into town to the hospital, all of us crying. When we got there and found all of the children injured but alive, the relief was something I will never forget. I then had to go to the police station and wait (with my beautiful friends) for hours until my son was released from questioning. He was as white as a sheet and shaking and his remorse (he had lost control on gravel) was overwhelming. I then took him to the hospital to see the children after reassuring him that they would all eventually be okay.

And now? Yes, all of the children have recovered after having to be in various spinal braces, leg splints etc. One niece had to be in a brace for months! All of them are fine now, physically, and don’t mind talking about that night but….

We adults are more aged and less resilient and each of us deals with the pstd aftermath differently, and sometimes in ways that are incompatible with each other. The remembered shock and horror of that night will always be part of who I am, and my absolute fear for, and love of, each and every member of my family that night is fierce.

The aftermath has been, and continues to be, a challenge for many of us but, with all my heart, I hope the pstd can abate soon for those of us still having nightmares, crying in our sleep, and waking up with the thud of fear.

I sometimes recreate my mother, my brothers and their families, and my son, into a huge lego castle of compassion and forgiveness and glee in the hope that pstd will dissipate in the sharing of words, company, or alone-seeking mountains. We have all dealt with this near-tragedy in different ways because each of us is an individual and, ultimately, alone. Alone is important and necessary I guess and I love it, but, since the accident, I have discovered loneliness in all of its intensity because I have recognised it in someone else.

When someone wants to be left alone, LEAVE THEM ALONE! Love doesn’t need proximity and sometimes its distance is a gift. It is very difficult sometimes to cope with the love and attention of well-meaning friends and family when you just want to be in your own space and deal with your own stuff without the burden of other people’s compassion.

This is to you, to me, to all of us.

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Wheelchair walking

Apparently, despite the fact that we are in Winter here down under in the southwest of Western Australia, the weekend will be sunny.

So I have decided to do something new and different and take Ants for a wheelchair walk tomorrow. Not only is this a way of getting him into the sun, it’s a way of me getting some exercise!

Also, I am contemplating using my blog to write more regularly again about how a marriage survives the dementia that comes with advanced Parkinson’s disease. Instead of blathering on about this and that, I will focus my blog-writing into a bit of a PDD theme. 

Since volunteering at the nursing home, I have learned so much and I seem to be in a perpetual state of quiet joy, playing dominoes and cards with various residents, doing the daily walk with dementia residents, rushing in and out of Anthony’s room for quick hugs.

The wheelchair walking will be a test of my physical strength (I am very unfit, physically) and, as the nursing home is close to the beach, and hilly, it will also be a test of preventing Anthony from toppling out of the wheelchair when we are going downhill!

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From listless to listful

Over the last few weeks I have discovered something wonderful about lists. You know, the kinds of lists that read like this:

Monday:
– pay bills
– ride bike
– groceries (don’t forget toilet paper!)
– change bedsheets and do the washing
– vacuum house
– write 1,000 words of new book
– ring plumber
– buy new hoses to replace leaky ones
– see Anthony
– cook a healthy meal
– catch up with other people’s blogs
– wash car
– plan next week with Ming
– ring Mother to arrange lunch
– start new filing system
– get prescriptions from chemist
– book lawnmowing people
– do tax
– return library books
– start taking photos again
– start praying again
– make soup
– make a cake for Anthony and Ming
– go to bed earlier and get up earlier
– do a cull of clothes
– sort out rubbish to take to the dump
– do tomorrow’s list

Okay so, despite the fact that none of the above tasks is, in itself, onerous, it was this kind of list, that rendered me listless. (Interestingly, the word ‘list’ derives from the Middle English word, ‘pleasure’). I would only ever be able to accomplish a few of my listed tasks, I would then feel like a failure….

Eventually, I realized that this kind of list-making was making me extremely unhappy, so much so that I could hardly face each and every day. I resented each and every task I didn’t get done and each and every goal that went by the wayside.

Nevertheless, every night I would make another list for the following day. Energized by a pre-midnight spark of incentive, I would make more do-able lists. But with no job to go to, with no Anthony at home to care for, and with Ming out of school, there was rarely anything on my lists that couldn’t wait, so it felt as if I were continually failing myself.

As a result, the familiar depression curled itself into a small bundle of rock-hard heartburn that only left me alone when I was asleep. So I slept away many days in June until, on the 29th, I woke up with a new idea; I would write my daily lists differently; I would write them backwards instead of forwards; I would write what I had done every day instead of what I should do.

Monday:
– paid all of the bills
– communed with dogs
– did all folding and put a load of washing on
– cleaned kitchen meticulously
– made a cake!
– saw Anthony from 1 – 4.30
– bought a bunch of coriander for the first time in my life
– made a curry from scratch
– washed hair
– communed with birds
– watched a show with Ming
– began reading a library book

To have done even some of the things I had listed as to-do for weeks (but not done), catapulted me out of my fug and into a fantastically different way of seeing each day. Now, with my listful notebook always handy, I list every single little thing I do on every single day – everything from washing my hair to planting strawberries; everything from poaching eggs to making friends with a new resident at the nursing home; everything from catching up with long-lost relatives to picking camellias for Anthony’s room.

This new listful method has also evolved into a better daily routine whereby I am in the nursing home every afternoon, seeing Anthony, doing the volunteering, seeing Anthony again and usually getting home by 6pm.

It is so wonderful to NOT be listless!

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