grief | jmgoyder

Lost and found 1

by jmgoyder

One of the most wonderful things about the last few weeks of decluttering the house has been finding things I thought were lost.

Dina, Ming and I have found a multitude of keys but the one pictured is rather important as it is the front door key. This is going to make getting into the house so much easier than climbing through the front window, which I actually had to do yesterday because Ming had taken the found key. As for the back door key, I am sure it is somewhere in the bowl of keys.

I have been telling Anthony a heavily edited version of this extraordinary decluttering experience by describing Dina as ‘the lovely woman helping me to spring clean the house for you.’ This works well because (a) despite being a bit of a wardrobe-hoarder, Anthony was, once-upon-a-time, an extremely organised person. He did all of the paperwork, milked the cows, looked after his mother, fondly known as ‘Gar’, and had various cleaning women in to help with polishing the silver and brass, wash the windows and, basically keep this beautiful old house in order.

Fast forward to now: As Dina and I opened the blanket chest in the spare room this week and I saw the amount of papers in there, I felt totally overwhelmed, caught between curiosity and cull mentalities. Without Dina’s help and presence, I would not have been able to cope but with her help, I was able to choose what to keep and what to throw away and, halfway through this process, I realised that these were Gar’s hoardings, not Anthony’s.

When I found a note, in Gar’s handwriting, to pay Juli (me) $60 from way back when I first came to work for her in the ’70s, I felt a bit of an emotional tug to either cry or laugh, so I laughed. Dina – always sensitive to how I might be feeling – gave me the pauses I needed to read out words written from one person to another on paper so fragmented that it sometimes fell apart in my hands.

Needless to say, much of this historical and sentimental paperwork has been put in a posterity box, including the love letter from Gar’s husband, Barr, which I thought I’d lost. More to say about these things at a later date. I still haven’t found a mass of gold (haha) but you never know!

Apart from all of this, it has been an extremely busy week in many ways so I have not kept up with other people’s blogs – sorry!

Oh yes and, now that the elusive parrots have returned, but absolutely refuse my offer of a photo shoot, I can tell you honestly that they are red-capped parrots. They are very shy of humans so I have decided to put a photo of the baby avocados instead (which the redcaps will probably eat anyway.)

It was a joy this week to catch up with a beautiful friend who I have know since school days, but with whom I had lost touch in a meaningful/nitty-gritty way. To find that we are still the friends we were, to share stories, wine and pizza, to exchange tears and laughter, to have reconnected like this – is a gift.

Lost and found; I salute you, N.xxxxx

Animal Australia Birds blogging Embarrassing moments Family Friendship Grief Happiness Humour joy LOVE STORY Marriage Parkinson's disease Wings

22 Comments »

Writing

by jmgoyder

It has been a very long time since I have had anything published, which is probably due to the fact that it’s been a very long time since I have submitted anything for publication, which is probably due to the fact that it’s been a very long time since I have written anything new. Sigh.

Of course I realise that blogging IS writing and I am very grateful for the fact that I have kept some sort of written record of the last few years’ events via this blog. And I am also grateful for other bloggers’ support. However, I am frustrated with my writing self in that I STILL haven’t put together a manuscript about Ants and Parkinson’s disease. I have begun the process of copy/pasting blog entries into an manuscript but it is quite tedious work as I have to do this post by post by post, get rid of the photos and ensure the dates are correct. I’m doing this but am still in 2012!

And now that I am spending many hours of most days in the nursing home, where this kind of job is impossible due to internet connectivity and my own iPad ignorance, I find myself slackly watching series with Ants, and always quite tired! Not that this time with Ants is wasted; it is brilliant to be together but when I began to do a crossword today (for me this is what old people do – no offence to older readers) I realised that I had to make better use of this time than pass it in such a passive way.

So, I am going to retrieve the notebooks from the top shelf of Anthony’s cupboard and begin to type our conversations out (the ones I began to jot down before he became so quiet). I can do this on either the iPad or the laptop as neither will require the internet.

I can easily put aside all of the things I don’t do very well: photography, acrobatics, raft-building, gardening, cartooning, etc. etc. because I know I can do one thing really well and that is writing. I want so much to write something meaningful and moving and encouraging for those who are afflicted with Parkinson’s disease, and those who care about them/for them. I want to write unsentimentally about the pragmatics of hope and care and comfort, beginning with Anthony’s story.

Writing.

The irony of my one and only published book (about Alzheimer’s disease) is that I had no idea, at the time, that my own husband would one day look at his windowsill and ask me to get the dog out of the room.

http://www.fremantlepress.com.au/books/1039

blogging Family Friendship Grief Happiness Humour joy LOVE STORY Marriage My published writing Parkinson's disease Parkinson's disease dementia Wings

45 Comments »

Gutsy

by jmgoyder

Gutsy, or Gutsy9, our pied peachick/hen, turned two last November. Anyway, she has now assimilated into our flock of peafowl but the others are still in awe of her audacity. If I leave the back door open even for a few seconds G9 will not hesitate to come into the house. This morning, for example:

She is often outside one of the four doors to the house, wanting to come in.

Or posing outside; yes, she is quite the poser and always has been.

Sometimes she still tries to fly up onto my shoulder but she’s a bit big for that now so I usually sit at one of the outside tables and she jumps up and lets me tickle her under the chin or stroke her head feathers. I wish I could take her into the nursing home to see Ants but it would probably freak her out now (not to mention the staff!)

Oh well, I can always show Ants the photos – the old and the new.

In the following photo she is resting on Anthony’s arm in the nursing home (2012).

And in this one, she is looking up at him during one of his last visits home (early 2014).

G9 has been, and continues to be, a very important addition to our lives. As many of you know, she was a bit of a foundling, rejected by her mother (whose identity I still don’t know) possibly because she is half white and half blue (‘pied’) and she has a very crooked toe on her left foot. Raising her was a learning curve for me because I had to take her everywhere with me during those first few weeks of her life, either in my pocket or underneath the collar of my shirt – a shock of course to anyone who spotted her. The funniest of these occasions was when I met friends for lunch at a restaurant and she poked her little head out of my shirt.

In many ways, G9 represents the years of our transition (Anthony’s, Ming’s and mine) from Anthony being home/coming home to Anthony being in the nursing home permanently. It is now the beginning of his fourth year there which somewhat flabbergasts me as he has outlived his advanced prostate cancer now by years. It is the Parkinson’s disease that so incapacitates him. He is now (and has been for some time) a ‘two person assist’ meaning that it requires two carers to get him out of bed/chair to toilet/dining room etc.

It’s a peculiar comparison perhaps but G9’s adorability, tenacity and head-held-highness resembles the way Anthony is coping with his situation. He is never depressed, rarely complains and is able to glean joy from the smallest of things; my presence in his room; freshly picked flowers; the domestic staff’s attention to detail; food (the lunchtime roast, my gifts of blue cheese and cherries); the occasional brandy; a soft blanket pulled up around his arms (yes, even in the heat of summer!); quips and humour from carers; slapstick comedy via Ming and me; and the pot of fake silk roses I gave him some time ago that everyone admires.

G9 is gutsy, yes, but Ants is gutsier; Anthony IS Gutsy.

Animal Australia Birds Family Friendship Grief Happiness Humour joy LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia Western Australia Wings

27 Comments »

Dusk

by jmgoyder

I went outside specifically to take photos of the cheeky willy wagtails but of course they disappeared as soon as my clumsy presence was felt, so I just took photos of anything and everything. And they are not very good photos because, even though I have a camera or two, I am not a photographer.

So this is Blaze, son of Doc 3 (deceased):

And this is Jack, the Irish terrier, who was gentle until Blaze taught him to hunt which is why we no longer have any poultry:

Blue wren:

Flame trees from dog yard with one of our many Christmas trees somehow flourishing in the heat:

Blaze again:

Feeding time – that’s Gutsy9 in foreground:

The last figs:

And, just a moment ago, Ming’s best friends about to take him out on the town:

This afternoon I sat with Ants watching two episodes of our latest series, ‘Luther’ then came home around 5.30pm having told him, as usual, that I would be back later. I hate this lie but it works! When I leave Anthony in the late afternoon, or evening, and promise I will be back soon, I re-enter the reality of dusk on the farm, and a sense of peace. Of course I wonder if he will be okay as the carers put him to bed but, now that I am a staff member as well, I hear wonderful stories about his sometimes witty okayness with the way things are.

In the summer, dusk can be dusty here, but it is also rather beautiful in a dry way!

Animal Australia Birds Family Friendship Grief Happiness Humour joy LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia Teenagers Wings

34 Comments »

Whispers

by jmgoyder

“If you listen quietly enough life will whisper its secrets to you”
― Rasheed Ogunlaru

Anthony’s dysarthria is getting worse. Dysarthria is difficulty in speaking and, in Parkinson’s disease, is caused by the vocal muscles not working properly. Except for occasional unwhispered flashes of eloquence (usually in response to visitors or staff talking directly to him and waiting for an answer), his voice now is mostly a whisper.

This means that over a period of hours, Ants and I may only speak a few sentences and that it is mostly me doing the talking. Sometimes I have to put my ear right next to his mouth to hear what he is whispering and often I still won’t understand and he will shake his head in resigned frustration.

At other times, Ants may form meaningful words into sentences that to me are indecipherable. As a result my mind-reading abilities are improving and usually I will be able to figure out what he is saying. Sometimes, of course, the sentences do make sense syntactically, but not semantically, for example when he asks me to move the calves outside his window.

It may be a long way off, or it may be soon, but eventually Ants may not be able to speak at all so I am preparing myself for that possibility by writing down the things he does say as well as the things that I say that trigger his half-smile. I am a bit scared though because his facial expression is mostly pretty frozen (another PD thing) so it may be hard to ‘read’ him.

The contrast between this whispering Anthony and the loud, bellowing, laughing person he used to be is acute but I refuse to allow this to be heartbreaking, and I refuse to revert to the fug of despair I felt so long ago that I hardly remember its blah. There is nothing heroic about this newfound attitude; it’s a matter of pragmatism and survival I guess.

There was a period of time way back when Anthony’s inability to smile spontaneously, coupled with my down-in-the-dumpness, made my visits to him sad and difficult and I would come home in tears. But now it is so wonderful because I look forward to seeing Ants, almost like the teenager-in-love I used to be, and evoking this new half-smile from him easily now, and often, is fantastic fun!

That half-smile highlights our days and Anthony’s whispered “I love you, Jules” makes me feel like the luckiest woman in the world. I so admire his resilience, acceptance and unsadness in the face of this horrible disease. His fortitude and courage continues to amaze me. He is not just my hero; he is a hero of Parkinson’s disease and I salute him.

And every whisper is a weapon against the impending silence.

Australia Family Friendship Grief Happiness Humour joy LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia

54 Comments »

Feb 23

The loop of loss and longing
by jmgoyder

Tonight I came home from my shift at the nursing home (which is now from 3-7pm) feeling terribly sad for one of the residents, B. She had been taken out by her daughter for fish and chips with some of her family but when she and her daughter returned, they were finishing a conversation which must have begun on the drive back and B, referring to her deceased husband, was saying things like, “So R is gone is he? I see … And I can stay here can I?” The grief and confusion in her beautiful face was a stark, mottled blush and her eyes seemed to be looking inward, grappling with the enormity of her bereavement. We – the staff – sat her down and reassured her and her daughter left.

I was already sitting at a table with two other residents, looking at magazines and a bird book, so B made a fourth. She was uncharacteristically quiet and still. I gave her a magazine, a hug and a cup of tea and she eventually said, “It’s hard when you lose someone and you’re all alone.” I squeezed her hand and said, “I know how it feels a bit, B, because my husband is in a nursing home.” With that she looked at me with eyes full of empathy and she enclosed my hand in both of hers. “I’m so sorry darling, that must be terrible for you.” Her sympathy amazed me since she had just heard about her husband’s death for the first time (of course it is not the first time in reality) and she seemed to be in a bit of shock.

But, less than 15 minutes later, as B finished her cup of tea, she asked the same questions she asks over and over and over again, “Do you know where is R? I need to be getting home. Can you give me a ride? He’ll be getting worried won’t he?”

Most staff go with the flow and reassure B that R will be here soon, or that he said it’s okay for her to stay here for the night. It is sometimes very hard to know what to do to comfort B because she is constantly on the move, ready to go home. She is mobile, articulate and always immaculate, but so terribly confused and anxious. A couple of the staff will gently remind B that her husband isn’t here anymore and she will be shocked and grief-stricken but within minutes will have forgotten this and will begin again to ask where R is.

I wish I could figure out how better to comfort this woman who constantly asks for her deceased husband; it’s as if she is stuck in a never-ending memory loop of loss and of longing.

Family Friendship Grief LOVE STORY Marriage

65 Comments »

Feb 16

Dreams
by jmgoyder

I have various versions of the same dream once or twice a week. In the dream Ants and I are on a holiday somewhere, a long way from home, and a long way from the nursing home. We are either at some sort of luxurious resort or at a wedding, and familiar family faces come and go from each dream version. Everyone is always aware that Anthony is very ill and often he is in a wheelchair. The strange thing about this dream is that its evening is suddenly punctuated by the horrifying fact that I have forgotten to bring his many pills and it’s too late, and too far, to go back and get them. But then an even stranger thing happens. He gets up from the wheelchair and walks around talking and laughing and socialising and I realise he doesn’t need the pills! Another recurring dream I have is that we are on the brink of getting married but he gets cold feet and the wedding is called off and I am broken-hearted. Whenever I wake up from this dream I am filled with relief that it was just a dream but then I look over to his side of the bed and am hit with the jolt of his absence. On these days I usually go into the nursing home earlier than usual. This morning Dina (my decluttering friend) and I cleared our fourth room – a little room at the back of the house that I once used as an office. It was filled with books, papers, some of Ming’s ‘stuff’ (which seems to be in EVERY room!) and I didn’t think we’d even get to the filing cabinet which was also full of bits and pieces. But we did! All legal documents are now in one place; jewellery in another; photos in another; and Ming’s bits and pieces in another, ready for him to sort out with the help of Dina. Now a little myth I need to dispel: Dina does not chuck stuff out; she simply hands it to me and I make the decision as to whether it’s worth keeping or chucking. And I am getting very good at chucking! Periodically she asks (she is so considerate!) if I am okay which is a fair enough question as some of the bits and pieces we find plunge me into a kind of nostalgia, but it’s mostly a happy nostalgia. If it isn’t, it goes in the rubbish bag – wonderful! As we declutter, categorize and cull, my mind unfurls its tightly-wrapped knots of confusion and clarity seeps back in.

Interestingly, I now have another recurring dream. In this dream, the house returns to the way it was before Anthony became so ill: spotlessly clean, tidy, organised and beautiful. But, for the first time ever, it will be my house too – less cluttered with ornaments and free of hoardings. I could never do this kind of thing when Anthony was home because he was sentimental about everything, even his father’s old dressing gown! And he wouldn’t like what is happening now but he doesn’t know so it doesn’t hurt him. I would never hurt him. And, thanks to Dina, this dream is coming true.

Family Friendship Grief Happiness joy LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia

36 Comments »

Feb 1

Missing Missy!
by jmgoyder

Well I miss Fergie too but Missy was definitely the most mischievous of the two. No matter what yard we put her in she Houdini-ed her way out of it almost immediately. As a result, we got into the habit of letting all of the dogs (our two and the two we were dog-sitting) out for much of the day.

So, the other day, when Missy was conducting an aerobics lesson with Fergie, Blaze and Jack, I drove up to the local shop to get some groceries and returned 15 minutes later
to
find
that
they
were
GONE!

Not Jack and Blaze; they were resting on the front veranda and initially I didn’t fret about Fergie and Missy having been assured by their owners (my nephew and family) that they would not run away. But, after about half an hour, I began to wonder where on earth they were so I did a preliminary search of the acreage around the house, including the pond,
with
a
growing
sense
of
absolute
DREAD!

Two hours later I was in a state of panic and texted Ming who was at work but he didn’t answer so then, with a lump in my throat, and tears in my eyes, I messaged my nephew’s wife and admitted that I had somehow lost their dogs. Then I went back outside to continue the search. “Where are they, Jack? Where are they, Blaze?” I kept asking our rather subdued dogs but of course dogs can’t talk so they just looked up at me sadly.

When I got back inside, having given up, and having resigned myself to the fact that my nephew, his wife, and their two small children would NEVER forgive me, I checked my messages and was
overcome
with
a tsunami-like
sense
of
RELIEF!

“It’s okay – they’re just across the road with J and P” (my nephew’s parents).

OH! THANK GOD!

An hour or so later J and P returned the little rascals and Missy recommenced the aerobics lesson from her preferred position on the table on the front veranda. I have never seen a dog with such kangaroo-like abilities. With gravity-defying agility she simply springs upwards and lands on whatever happens to be higher than the ground. Extraordinary!

But she was a bit tired after her adventure across the front paddock and over the road, so she concluded the aerobics lesson in relaxed mode.

Animal Australia Embarrassing moments Family Friendship Grief Happiness Humour joy Western Australia

20 Comments »

Jan 29

Small mercies
by jmgoyder

I have just found out that my lifestyle assistant/occupation therapy role in the dementia house of the nursing home where I work part-time will now allow me to feed those residents who can’t feed themselves. I will also be allowed to serve food and drinks (previously a no-no due to the risks of choking/dysphagia) but now that I have seen the training dvd twice, and filled out the dysphagia quiz/questionairre, I am allowed to help, rather than hover, during mealtimes.

Not only that, the three of us who alternate in this role have had our 3-6pm shifts extended by an hour – to 7pm – which is a wonderful idea because it will allow for a more relaxing atmosphere before and after meals.

I am still finding my feet in this job and today I felt a bit at a loss when the wheelchair walking was limited to inside (due to the heat – 36ish) and, after taking F, Y and B through the inside of the complex, from house to house, I came back to find that M’s daughter had begun a very successful table ball game (rolling a plastic ball to and fro).

M’s daughter is really competent with this game thing, whereas I am still a newbie and not very good at playing games, so I am learning a lot from her. She visits her mother every single day at the same time and when I see her I feel relieved to have her bingo expertise!

It is hard sometimes to find ways to provide entertainment because I am pretty hopeless at card games and jigsaws and arts and craft; I much prefer a conversation and today B and I had a hilarious one.

E, the OT boss, says that to be unhurried is good and to go with the flow is even better but it is harder than I thought it would be to just relax into this role. The unpredictability of how each of the ten women feel each day from 3pm is, of course, the governing cue and if someone is anxious she is the first person I comfort either with a hug or a walk or a conversation. Today, S. was, as usual, crying so I said, “C’mon, S, it’s not that bad!” And she looked up at me, bared her teeth and said, “Okay, Mum!” We all laughed – residents and staff.

B said “Told you so” in her droll way, Y said “Leave me aloooooone!” and J, who hardly ever shows any feelings, smiled at me just before I was finally allowed to give her dessert.

Small, wonderful mercies!

Embarrassing moments Family Friendship Happiness Humour joy Parkinson's disease Wings

40 Comments »

Jan 13

Silence
by jmgoyder

Lately I haven’t felt like reading or writing anything much. Despite this temporary aversion to words, I have plodded in and out of other people’s blogs and/or Facebook posts and have begun copy/pasting bits of my own blog into a possible book about Anthony and Parkinson’s disease but the initial buzz of this latest project has abated to a low hum. I know that this is worthwhile so will continue but re-reading the bits and pieces of posts I have written over the last three years of our unwilling venture into the landscape of Parkinson’s disease and dementia seems to have rendered me wordless. I draw enormous encouragement and inspiration from other people’s words but have become sick and tired of my own wilting voice.

The strangest thing about my own silence has been in acknowledging other people’s silence, especially those with dementia with whom I interact at the nursing home in my new part-time job as ‘lifestyle assistant’. Initially (a few weeks ago) I accompanied the wheelchair walks with my loud voice – admiring flowers, pictures on walls, the automatic door, the delicious smells coming from the kitchen etc. But, over the last couple of days, I wheeled various women around the gardens of the nursing home property in silence – just listening to whatever they had to say or, if the person were unable to speak, I shut up too. The unbusy silence of these short journeys seemed somehow wrong at first but I now see how my silence allows whoever is in the wheelchair to smell the roses, see the pictures, hear the greetings of staff, touch the hands or shoulders of other residents, and converse with everyone we come across.

I have never loved a job as much as I love this job, but some of the lessons learned, via the different kinds of emotional suffering people with dementia endure, leave me speechless. Touch has become much more important than words and, even though I am a huggy person, hand massages aren’t really my forte but these really work in calming some people down.

Now that Anthony has entered this dementia phase of Parkinson’s, I am learning once again how to listen better, how to shut up, and how to be comfortable with silence. I really believe in this silence thing now but am not sure. I know that with Ants my silent presence in his room, or wheelchair walking around the grounds, frees him from the responsibility of conversation now that he has kind of lost track of language.

Anyway, perhaps, sometimes, silence IS golden.

Embarrassing moments Family Friendship Grief Happiness Humour joy LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia Wings

64 Comments »

«Older Entries

Newer Entries »

jmgoyder

wings and things

Lost and found 1

Writing

Gutsy

Dusk

Whispers

The loop of loss and longing

Dreams

Missing Missy!

Small mercies

Silence

Blog Stats

Recent Posts

Follow Blog via Email

Archives

Dementia articles