jmgoyder

wings and things

Confusion

Yesterday, a nurse and her husband visited the nursing home with their beautiful newborn in his pram. I bumped into them in the hallway outside Anthony’s room and was absolutely thrilled to see this beautiful baby and asked them if they could wheel the pram into Anthony’s room so he could see the baby. Of course they were delighted to do so.

But then everything went wonky. For the entire afternoon, Anthony was distressed about the baby.

Anthony: We already have one; we don’t need another baby.

Me: He isn’t our baby, Ants! They just wanted to show him off to you!

Anthony: Where’s the baby?

Me: He’s gone home with his parents; he isn’t our baby, Ants!

Anthony: I’m worried about our baby.

Me: Please, Anthony, he is not our baby; they were just visiting!

I was with Ants for the whole afternoon and, every time he woke up from dozing, he became anxious about the baby. I have never seen him this confused before so I guess we are entering a new phase.

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Just being there

One of the things I’ve learned over the last year or so is that I don’t need to do anything, go somewhere, think of an activity, plan an event, force Anthony to converse, figure out how to get loved ones to visit him more, stress myself wretched with ideas of how to make his life better … I just have to be there.

So that is what I do now – an undoing really – a breath-saving realisation of how simple it is. I sit next to this beautiful husband of mine, with my hand on his shoulder, or stroking his head, watching television, talking about the past, sharing secrets, rejoicing in our son, Ming, smiling at each other, joking about silly things ….

We are so conditioned to do, do, do! It is such a great relief to simply be there, to embrace the long stretches of silence when Anthony is dozing, to quietly rejoice in the fact that our love has not been diminished by his disease, to just be.

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Making friends with dementia

It is inevitable: one of these days, I will rush into Anthony’s room, plonk a kiss on his lips, sit down next to him with a grin, put my arm around his shoulder, and he will not know who I am.

In my PhD research and subsequent book about dementia – eons ago – I talked about how, no matter how nonsensical or confusing the person with dementia’s stories were, it was still beneficial to have those conversations, to participate in what I called ‘storying’.

Fast forward to now and working in the dementia cottage has been an absolute gift. I have a job, albeit part-time, in which my role is that of “Lifestyle Assistant”.

Over the last several months, as both a volunteer and employee at the nursing home where Anthony resides, I have become more and more enriched by the relationships I’ve formed with the residents in the dementia cottage. Partly this is due to putting into practice much of what I learned and believed all those years ago when I simultaneously worked as a nurse in a nursing home and embarked on my thesis.

This job has taught me so much, not just about dementia itself and how it affects people differently, but about how vital friendship is to those who have dementia. Common sense really but it is often assumed that if the person with dementia doesn’t recognise you, you may as well not bother visiting, conversing, relating to them. But why? That person with dementia still needs your friendship even if she or he doesn’t know who you are anymore.

On entering the dementia cottage, I am mostly unrecognised as someone any of these ten women have met before (every yesterday has usually been forgotten), but I am still made to feel welcome, and warmly greeted by those who can still speak. The first thing I have begun to do, during my 3-7pm shift, is to greet each of the ten women individually, either with words, or a hug, or a joke, or the offer of a wheelchair walk.

I realised the other day that the reason I love the job so much is simply due to the fact that these women have become my friends, so much so that I have begun to miss seeing them on my days off. Since I only work six four-hour shifts per fortnight, that’s a lot of missing! I love these women (despite the fact that Anthony has often told me that I throw the word “love” around a bit too freely!)

The point is this: my ten friends with dementia may not know who I am, but I know who they are. I’ve read their histories, learned their personalities, and have now figured out which activities individual people most enjoy.

Dementia can be a cruel, debilitating disease which renders the victim helpless in so many ways. People with dementia need friendship but those of us without dementia should consider the possibility that we also need their friendship.

It is inevitable: one of these days, I will rush into Anthony’s room, plonk a kiss on his lips, sit down next to him with a grin, put my arm around his shoulder, and he will not know who I am.

But I will know who he is and, if he asks, I will simply say, “I’m your best friend.”

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A way with words

Despite the fact that Ming always loathed anything to do with literacy when he was at school, he has a wonderful way with words and, like Anthony, often comes up with the funniest phrasing.

The other morning I was about to go in to see Anthony and, wanting to add a bit of colour to the day, now that the weather is wintery, I’d dressed in an orange shirt and a multi-coloured jacket that had a bit of orange in it. As I was about to leave the house, I had this brief conversation with Ming:

Me: Do you think this shirt clashes with the jacket, Ming?

There was a long pause as he looked at me, his brow furrowing in exactly the same way Anthony’s is furrowed.

Ming: I have a bit of a problem with the jacket, Mum.

Me: What? But it’s my favourite jacket!

Ming: Well it makes you look a bit like a hippy.

Me: I’ll have you know it was a very expensive jacket and everyone else loves it!

Ming: They must have very poor taste then.

Me: Well thanks a lot, Ming, for the vote of confidence! I had wanted to be like a kind of rainbow today for Anthony’s sake.

Ming: Oh! Sorry, Mum. In that case your outfit makes perfect sense but it is TOXIC to the fashion industry, just so you know.

I couldn’t stop laughing on my way into the nursing home and wondered if Ants would have the same reaction. So, on entering his room, I asked him how I looked.

Anthony: Messy.

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The party

Last Saturday I invited a wonderful friend, Mike, who has done the painting in this house over many decades, for drinks at the nursing home at 3pm and my lovely friend, Mel, and her daughter, Emily, also joined us.

Of course it wasn’t the sort of party we might have had years ago when Anthony’s mother was alive, where the drinks were over flowing and the nibbles plentiful: champagne, pink gins, cinzano, cocktail sausages, oysters, assorted cheeses, pate, and other savouries. Neither was it the sort of party we had in Anthony’s pre-marriage-to-me bachelor days: lots of beer, roast chicken, steak on the barbecue, and, seasonally, crayfish.

It was a much simpler affair with just the five of us and the unexpected addition of a nephew from Perth, but this small number of people easily fills Anthony’s nursing home room and seems like a crowd. Also, despite the fact that none of us could drink much (or anything at all) due to having to drive home, and my bowl of almonds wasn’t popular, the open bottle of red wine, the wine glasses that I had ready, and a few bottles of warm beer, simulated a real party-of-old. We were all quite lively and attentive to Anthony and, thinking about it now, it wouldn’t have worked with any more people because it would have been too overwhelming for him.

After everyone left and Ants and I were talking about how lovely the occasion had been, I felt I’d hit on a great idea for the future. I could invite a handful of his many friends for the same kind of party every now and then; I might even be able to get a few of his friends and relatives that are a bit nervous of the nursing home to come along. Yes! I need to take the initiative here and do a bit of old-fashioned planning and inviting.

The next day, Mike emailed me this message:

Hey Julie, just a thank you for yesterday at the nursing home with Anthony.
I was happy to see Ants in a great frame of mind he is looking so well as to when I last saw him. I was laughing to myself all the way home with his comments to me when i told him that he waited until he was 55 then got married at 57, and he replied ” you’re an arsehole” he definitely hasn’t lost his sense of humour. I thought he was extremely bright also yesterday.

I’m thinking that the nursing home has done him the world of difference in knowing that he is being looked after so well in his stage of life with old age and all that goes with it.

Sadly yes he would still like to be home with his Julie and Ming on the farm but that is not possible now. We all realize that he is in the best possible care .

Family and friends can still get to visit him there for however long they have time to spend with him so long as it doesn’t tire him out, I noticed yesterday that he does tire out.

I will come see him again soon to stir him up or he to me.

It was good to see you again you are looking bright again since I last saw you on the farm the afternoon you brought Anthony out for afternoon visit.

Today, it was very easy to conjure Anthony’s newfound smile by reminding him of the party. This was our conversation:

Me: Wasn’t it great to see Mike again!
Ants: The food wasn’t good.
Me: Okay, so what do you want next time?
Ants: Hors d’oeuvres, you know, the ones ….
Me: That your mum used to make – yes I get that!
Ants: Is she all right?
Me: Who, Mel?
Ants: No, Mum.
Me: She’s fine, Ants.

Thanks so much, Mike, Mel, Em, and nephew Michael for being part of last Saturdays party!

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Attraction

Attraction is a weird thing because, even though this ‘pull’ is usually to do with the romantic urges of the young, it still has a very powerful influence on the confused emotions of the aged.

Many of the ten women in the dementia house ‘see’ staff and/or other residents as men, possibly because most of us have short hair. So there are often small cries or salutations to ‘Joe’ or ‘Fred’ or ‘Henry’ and we (staff) have to loom close to cover the invisibility of those absent presences. There is no strict rule about how to answer the question of ‘where is Richard?’ but most of us go with the flow and say that he will be back soon.

The doll thing used to give me the horrors because it seemed so totally odd, even patronizing, but I have changed my mind now due to the need many of these beautiful women have – just to hold a baby again.

Attraction: a weird and wonderful experience of opposites, failings, clumsy sentences, beautiful, unusual, extraordinary human beings but mostly a desire to know that interesting person better.

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Thank you, Jill

In all of the decluttering and re-organising of this household/farm I have made some wonderful friends like Dina (Chaos to Clear), Mike (antique valuer from Australind Timeless Wares and Collectibles), and now Jill and Ray (from Dardanup Heritage Park and Museum). I’ve already provided links to Dina’s service and will do so for the other businesses once I obtain their permission.

I have sold some things to Mike and, this morning, a ute-load of ‘goodies’ from the sheds to Jill and Ray. Jill, whose late husband, Gary, began the heritage enterprise some years ago, now runs the museum with employees like Ray, and a team of volunteers. She is a delightful woman whose enthusiasm for some of the objects was contagious today. Jill likes items that can tell a story and this, to me, is invaluable and I feel privileged to be able to contribute to the stories her museum tells.

Ray, a big, strong, no-nonsense sort of man, single-handedly lifted everything from milk cans to a marble-topped vanity, to an old ice chest, into the back of his ute. Ming and I helped of course but we were distracted by the fascinating information Jill and Ray shared about each of the smaller bits and pieces. And I was able to provide some history of this farm to them too because I knew a bit about Anthony’s family’s predecessor from what Anthony has told me over the years; I also knew various dates.

Anyway, after the ute was full, we had a coffee break and I showed Jill some of the inside-the-house stuff – the hat box full of hats; the roll-top desk; an antique mirror; an old singer sewing machine, the old print we found in one of the sheds etc etc. and bits and pieces of very nice, but chipped, china. Just as we’d done with the shed contents, we agreed on prices for some things and I donated others.

Here are some pics of what will now be at the museum. I am going to be allowed to write something about Anthony’s history which will be displayed in the dairy section of the museum with the milk cans. I raced into town this afternoon to tell Anthony that, if he sold some milk cans to the Dardanup Heritage Park, he would go down in history because I would write something about him.

Anthony: How much money?
Me: Heaps!
Anthony: We need to check with xyz.
Me: Rubbish, Ants – they are your milk cans!
Anthony: Okay….

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Okay so I am making some money from this massive cull, but I am also making friends with some really knowledgable people who know the difference between silver-plate and sterling silver (surprisingly difficult to tell sometimes); antique and just plain old; rare and common. I don’t even think Anthony would have known what was in the sheds; after all, he came here at 23 and proceeded to milk cows nonstop for decades.

The most hilarious thing that has happened so far is to do with the old copper washing machine that the heritage people were interested in. I got some advice from someone who said it could be worth $1,000 so I emailed Jill a couple of weeks ago with that quote and she didn’t reply so I got all paranoid-worried and apologised if the price seemed inflated. I subsequently got advice from Mike that it would only be worth $200 max. How embarrassing! But today, we all realised that the stupid copper was cemented to the floor of the wash house so would be impossible to retrieve anyway. Lots of laughs!

Me: Do you want me to get the Dardanup Heritage Park people to come and have a chat with you about the past?
Ants: With Ming too?
Me: Yes.
Ants: Good idea, Jules.

I am not sure how the same heart can splinter but still sing at the same time. This describes my paradoxical experience of the last several weeks since my decision in January to tackle the enormous job of decluttering, selling, finding, giving, keeping, organising over a century’s worth of stuff.

It isn’t over yet; there are still the old photos and documents to get through but it is a beautiful thing to have clear spaces that hold their history inside the dust of imagination.

Thank you for today, Jill – thank you for the hug.

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My dad’s birthday

Today would have been my dad’s 94th birthday if he had lived. He died when my brothers and I were teenagers so he never saw any of our children who nevertheless know him as Granddad. My mother was only 43. Dad was only 57 and died in Intensive Care at the local hospital. He had been admitted having suffered two heart attacks and was recovering when he suffered a third fatal one. The shock and grief of that day is something I will never forget especially as I was on the other side of Australia at the time, in Sydney.

The following portrait was done of a photo taken of Dad a couple of years before he died. We all have the photo and the portrait and my youngest brother even has it tattooed on one of his arms.

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Herbert Henry Brinsley Lane, who went by the name of Brinsley but was most often called Brin, was a tall, well-built man who had a presence. He was known for his eloquence and his strong silence, was not particularly gregarious, but very compassionate and generous. His love for my mother is the lens through which I remember my childhood.

He had a Charlie Chaplin way of standing which, as a child, I tried to imitate, and a habit of talking to himself when trying to figure anything out. A strict father, he taught us all manner of manners, especially table manners! But he was a gentle giant.

A radio announcer and high school teacher at Sydney Grammar School, Dad made the extraordinary decision in his early 40s to embark on chiropractic studies and thus began our travels – first to Canada (I was 8) where he completed his chiropractic degree, then to Papua New Guinnea (I was 12) to work as a chiropractor on a mission in the highlands, then to Western Australia (I was 15) where he set up a practice. He was a wonderful chiropractor and if patients couldn’t pay, he would accept milk or apples as payment.

Not long before he died, I was on the phone to him about how much I hated the college I was at in Sydney and, despite being a godly man he told me to come home and to tell the college people to “go to buggery!” Those were his last words to me, unforgettable in the way they still make me laugh, and cry, in that I didn’t make it home in time to see him alive for the last time. At the time of the phone-call, there was no indication that he was ill.

In my writing room, I often look up to my right at the portrait of my father and, underneath, a more recent one done of my mother.

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Significantly, Dad approved of Anthony when nobody else did, including Anthony! After all, I was eighteen and Ants was 41. After Dad died, I went back to work for Anthony’s mother, Gar, and the rest, as they say, is history.

I often feel the presence of my dad: when I am having lunch with my mother; at family get-togethers; in the nursing home with Anthony; during moments of hysterical laughter with Ming; during those unexpected moments of intense grief; and when I accidentally speak with my mouth full. Sometimes I imagine that Dad is there/here with me/with us, smiling proudly.

Happy birthday, Dad.

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So much for the autumn hiatus!

Well my autumn hiatus didn’t last long did it! Neither did my ambitiousness haha! I had another look at the full-time behaviour consultant job description and realised that although it seemed a perfect fit for me, there is no way I could do it and keep my job at the nursing home. More importantly, there is no way I could do it and spend enough time with Ants. I did email the association asking if it might be possible to job-share the position but I haven’t heard back yet. There was a public speaking/teaching component to the job but there were also a lot of administrative duties (of people and paperwork and policies) and the latter does not appeal to me in the least! I’m much better at being bossed than being a boss.

So that’s that for the time being – maybe down the track I will do something like that but in the meantime it’s back to writing, including blogging, for me. And I discovered a wonderful program yesterday that will convert your blog into a PDF document and it’s called blog2print. In just an hour or so and for less than $100 I was able to convert 2000 pages of blogging, from 2011 to now, into seven PDF documents inclusive of photos. For more money the program will also convert your blog into a hard cover book, or books, but I didn’t want that because I want to be able to edit and revise and rewrite all those blog entries into a book about our personal experience with Parkinson’s disease and dementia. I had already begun the tedious job of copy/pasting bits into a word document but it was taking forever partly because of having to read the blog backwards and getting confused with dates etc. It wasn’t until I googled “how to turn a blog into a book” that I discovered blog2print and other programs that will do what would take hours and hours manually in just a few clicks – extraordinary!

Anyway this discovery also reminded me of how much blogging has become a part of my life. Not only is the camaraderie between bloggers a fantastic source of joy, but if I hadn’t written all of those posts I never would have remembered the chain of events of the past few years. I guess what I’ll do now is to print it out in 50-page sections and do the hand-written editing in the nursing home with Ants, then come home and finish the job on the computer. That way I can add material retrospectively.

Also, in anticipation of a blog break, I suddenly felt quite bereft! It is such a great way of keeping a record of things that can easily be forgotten – especially conversations both with Anthony, the women in the dementia house, and with the Ming.

For example, he rather reluctantly came to find me at work the other day and I let him into the dementia house and introduced him to the ten women who he proceeded to charm easily, simply because he is a male, and young! Oh I am so relieved not to be going for that behaviour consultant job. I work this afternoon and I can’t wait! I have never felt like this about any other job and I am very much ‘at home’ in my OT role now. Even though none of the women remember me, I am greeted with welcome smiles and the oft-repeated “Oh you look so familiar. Have we met before?”

Anthony doesn’t remember who any of the staff are either and the other day introduced me to one of the carers by saying to her: “Have you met my wife?” She and I exchanged a grin and a ‘yes’; after all, we have known each other now for over three years.

Blogging helps me to remember and record these tidbit gems, these moments of pleasure and humour in amongst the pain of illness and age. And autumn is a good time to write and be because it is too rainy to go for a bike ride, Mr Tootlepedal!

It might also be a good time to convince Ming to get himself some new shoes. IMG_4473

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Autumn

My clouds hug the sky

cockatoos caw out their joy

and the rain giggles.

Just a little haiku to celebrate our autumn. Every evening when I leave the nursing home, I drive past a spot on the edge of town where hundreds of white cockatoos fill the trees like giant snowflakes, and create a raucous cacophony. They are so loud, it can be alarming if you don’t know what the noise is but I love it! I am not quite sure why there are so many in that particular spot as there are none on the farm; there are plenty of other parrots here but not the white ones. Interesting. Well it is finally raining and the brown paddocks will soon be green again! The faltering wormwood will come back to life, the five acres of lawn will need mowing around the house and everything that looked dead will be reborn (okay, except for most of the roses!) IMG_4307 IMG_4505 The wormwood hedge stretches from where the house is right back to where Ming’s shed is. I remember the days when Anthony trimmed it, then the days when Arthur trimmed it, then the days when Ming said he would trim it, and the days when I thought about trimming it, but, alas, all of those days are gone. Autumn seems a good time to take another blog break so that I can concentrate on some other projects including applying for a job as a behaviour consultant with a local Alzheimer’s Disease organisation. It might happen and it might not but it would be a wonderful opportunity to share some of the lessons I have learned about dementia and communication over the years, including what is happening right now with Anthony and me. It is very hard to see someone who used to be the life of the party reclined crookedly in an armchair in a nursing home. It is also very hard for me to find the words to adequately express how much I love this man, my husband, Anthony, without resorting to cliches. Hence the concluding haiku:

My sky hugs your clouds.

The birds are oblivious.

You hold my small hand.

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