jmgoyder

wings and things

Catching up

After weeks of fighting a tenacious flu that kept coming back after each course of antibiotics, I finally got a chest x-ray which was clear (phew!) but my dr seems to think it was probably a case of pneumonia treated with the wrong antibiotics (I saw another dr to begin with because mine wasn’t on duty). So now I am on a fifth course of two different antibiotics and already feeling a lot better instead of a little bit better. It is such a relief because, despite being well enough for my mama’s 80th b’day and well enough to visit Ants most days and to do some volunteer work, it is only now that I am beginning to feel normal well ha!

As my role as ‘care-giver’ has become most of my identity now, I have a bit of a terror problem when I get sick because I am so needed by Anthony so to have been given the gift of a clear chest x-ray is like gold!

I’ve been trying to catch up and re-connect with blogger friends but have now decided to simply read blogs in a from-now-on mode rather than go back to see what I might’ve missed. It’s been a bit of a relief, too, to let go of the self-imposed feeling of obligation to blog every day if I just don’t have the time or inclination. Perhaps someone should write a book about blog psychology because I get the impression that other bloggers often suffer the same kind of ridiculous guilt. Interesting.

My volunteering at the nursing home, though interrupted by this flu, because you are not supposed to go in there if you are sick (paradoxically, this is probably where I first got infected), continues to delight me and I have now sent an ‘expression of interest’ email in response to last week’s advertisement for a “lifestyle assistant” in the dementia wing. This is a permanent part-time position from 3-6pm for someone to provide activities while the nursing staff conduct the evening showers. As I have already been volunteering in this wing from 3-4pm on the weekends, I am familiar with each of the ten residents and have developed a bit of a rapport. Tomorrow I will fill out the application form and hope for the best. I think this kind of arrangement would be a perfect match and hopefully there will be no perceived conflict of interest as Anthony is not in the dementia wing. I am quite excited about this job possibility and the money would be a relief!

Ming has a job he loves at a restaurant called ‘Corners on King’ so he is gradually becoming independent financially and in other ways. He hates for me to make him any food so my tactic has been to make him a smoothie every morning into which I pack a punch of secret ingredients (if you want to know the secret ingredients you will have to email me!) For those who don’t know, Ming has, from birth, had a rather extraordinary unhungryness – long story which I can’t be bothered telling now but my best illustration of this is the 40C degree day, when he was about one, in which Ants and I had to use a syringe to push a bit of milk into his ungreedy little mouth.

The last few years have been enormously challenging with me having to resign from my job as university lecturer; Anthony’s permanent admission to the nursing home; my mother’s horrifying injuries after falling from her bicycle; the car accident and court case and cousins’ heroic recoveries; Ming’s two scoliosis operations; some friendships rekindled and others on hold; peace, joy, guilt and wretchedness in equal amounts; Ming’s short-lived, but loved, dairy worker job abandoned due to his spine; finding out that you really love eggs on toast; and that if you don’t like what you look like, you need to stop looking at yourself and look away…..

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…. and finding out that the width of hope is immeasurable!

Catchya later….

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What a peculiar blog!

I have just looked back to discover that tomorrow will mark the third anniversary of this blog. The reason I was looking back was because I want to find, in amongst all of the bird stuff, everything I have written about Anthony and Parkinson’s disease and how he, Ming and I have coped. I thought it might be useful to compile these entries into one document and see if it works as a whole, maybe as a book. Apart from the wonder of all the friendships wrought via blogging, it has also been wonderful to find that I have a record of these past three years because I don’t think I would have remembered otherwise, except as a kind of blurry fog of joys and sorrows – mostly joys.

The birds, and the wings idea, have punctuated the last three years in real and metaphorical ways. Many have now been lost to fox attacks, I have given the emus away, and all three of the original caged birds have been set free. We now have a dozen peafowl, nine guinneafowl, five geese and one duck. The casualties have been heartbreaking and I have decided not to acquire any more due to their vulnerability to fox attacks. Gutsy9 is still thriving and one of the two peachicks hatched last year has survived and I think there will be more chicks soon. I have stopped interfering in the way natural selection works. All of the birds still take bread out of my hand and give me enormous joy (except Godfrey, the gander who likes to bite me!)

But everything changes and now that most of my daytime hours are spent in the nursing home, the birds and I don’t commune as much. Hence, when they hear my voice, they come running AT me with a mixture of love and greed (for wheat) that it is hilarious to watch. And even the birds who are gone continue to live on via Anthony’s hallucinations. Almost every day he points them out through his nursing home window. The outdoor tables and chairs become turkeys; the lawn is speckled with chooks and guinneafowl; and the flowerbeds are parrots. I can see them too.

It seems a rather peculiar blog in its higgledy-piggledyness and some of my entries make me cringe, but hopefully I will be able to draw out enough of the love story to compile a coherent record that might be helpful to others who live with Parkinson’s disease.

Here is a picture of the nearly grown up peachick, still very much attached to his mother (in foreground)!
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34 Comments »

Un-blogged….

There are several reasons that I have become somewhat disconnected from the blogosphere lately:

1. I have made Anthony’s nursing home room a simulation of our home;
2. I’ve become addicted to the Danish series, The Killing;
3. I’m preoccupied with crafting a present for my mother’s soon-to-be 80th birthday;
4. I have given up on trying to tempt Ming with my ox-tail stew;
5. My volunteering in the dementia ward on the weekends is a gift to me because, years ago, when I worked as a nurse in various nursing homes, there was never any time to actually chat with patients; now it is actually something that is scheduled!

So, I have decided to go for a job at the nursing home in the hope that my so-far volunteering reputation will help.

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Gutsy 9 – my fantastic bird-in-hand

For those who don’t know, G9 is a peachick who, for some reason (maybe because she was half blue/half white) was abandoned by whoever hatched her. I caught her as she was scuttling, terrified, into the old dairy and pretty much raised her with the hands of Ants and Ming.

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Today, I decided that I would come home earlier than usual from the nursing home. I told Ants I had to go and feed the birds and dogs, and then said I would see him later.

Ants: You won’t come back.
Me: What do you mean? I always come back!
Ants: Not, yes, what car?
Me: Our car, silly!
Ants: How many calves? I need those people for the fireplace
Me: Only ten left to feed. Ming will do it. I know who you mean for the fireplace.
Ants: Are you sure?
Me: Yes, should we ring tomorrow?
Ants: You do it – something is wrong with me.

When I got home, I went straight out to find Gutsy and, as usual, she was waiting for me:

I’d like a word, Julie

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You’re always out and about and I feel ….

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Oh I think I’m going to cry – how embarrassing!

G9!

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There is no such thing as wireless!

Such fun! The new modem suddenly stopped working today, and the old modem suddenly started working, except for when it needs little smokos, which is every few minutes. Hence, this a very quick post to say that my midnight visitor turned out to be a genuine neighbour’s son, looking for a genuinely lost dog but I’m still not sure why this had to be after midnight.

I received a reply from the Australian Journal of Dementia Care to say that they would be delighted for me to submit articles – yay! Coincidentally, they had featured something about my long-ago-published book about Alzheimer’s disease in their last issue – serendipity is so weird.

Anthony home all day today with sun shining. He actually chopped a bit of wood and walked around the farm without his walker, until he nearly collapsed from exhaustion. I was worried he might fall but then thought what the hell, he needs some autonomy back, so I just continued doing the washing/folding, feeding animals etc. but I found this difficult because I remember the falls before the nursing home (he doesn’t).

When it came time to take him back to the nursing lodge, there were a few mutual tears. I am feeling terribly sad writing this and internet is probably gonna die in a minute. If so, just know I’m doing my best to keep up with posts etc. but sometimes it all gets too hard.

Now I just have to go and plug in the wireless phone, new modem, Ipad etc. and all will be well – yeah right!

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Another blog?

I had intended to take a break from this blog for the weekend so that I could work on the dementia articles and stay overnight at the nursing lodge. The latter was impossible due to the person-in-charge needing this idea to be taken up the ladder but also because Anthony wanted me to come home to take care of the farm (Ming has gone to Perth for the weekend). I was surprised by Anthony’s reaction, and I await the hierarchy’s verdict on future stayovers, but at least I have redrawn attention to the possibility, perhaps more seriously than I did previously. I stayed with Ants much later than usual, until he said, “Jules, you better go home before it gets too dark”.

So now I am home, Ming’s away, I’ve put the birds away, fed the dogs, boiled my corn cob (latest addiction) and am playing around with a latent blog (with the ridiculous title of philosophication) that I registered with WP ages ago. I’ve done the ‘About’ page and one post but I am not quite sure how to get it ‘out there’ except to put the link here.

The reason I am doing this is because, as this is my general blog, I want to have another place to draft/write articles about dementia because this has been a long-held research (and now personal) interest. After all, my PhD thesis was about Alzheimer’s disease and a revised version of this was published as a book in 2001 (We’ll be married in Fremantle), but I don’t want to inflict dementia-ridden articles on readers of this wings@things blog; hence another blog. I did try to do the separate page thing on this blog but I couldn’t figure it out.

So here is the link for anyone who is interested. I am very excited to be writing material that may be publishable beyond the blog, but I am not even sure if I’ve set it up properly so here is the link for anyone who is interested:

About

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Dementia and Invisibility

Thanks so much for the wonderful feedback on yesterday’s draft article. I think it would be really interesting to incorporate those comments into the final draft of the article. I’d also like to add some positive aspects to the notion of dementia replay but I want to do a bit of research first. The journal I want to submit to is called Alzheimer’s Care Today.

Here is another (very rough) draft article for those who are interested. Again, any feedback appreciated.

Dementia and Invisibility

Almost every day I visit my husband, Anthony, who is in a nursing home because he has advanced Parkinson’s disease, prostate cancer and now the beginnings of dementia. Over the 18 months since he was admitted, the PD has affected his ability to speak due to his throat muscles not working properly any more, a diminished ability to concentrate and, with the associated dementia (PDD), various degrees of confusion. He has been transformed from a larger-than-life, loud, laughing, boisterous person to a mostly silent person with a very soft voice and a blank, expressionless, seemingly sullen face. And, over the last few years, he has shrunk in size by nearly 10 kilos. Once upon a time he had the most wonderful presence.

Now, he is becoming invisible.

Not to me, but to others. Let me explain. When I visit I am greeted with great friendliness by all the staff, banter is exchanged and the quietness of Anthony’s situation is enlivened. Sometimes there is a rush of conversation which is difficult for Anthony to follow because with PD comes an inability to concentrate on more than one thing at a time. For example, if he is watching the news, he is too distracted to concentrate on my scintillating anecdotes (ha!) so I turn the volume down. If I visit at the same time as someone else, the conversation often bounces around him because he can’t keep up. If he begins to say something and has difficulty with the words (this is happening a lot more often now), there is a tendency to talk over him or else finish his sentences for him instead of waiting for him to finish what he has to say. I do this myself and have to make myself shut up sometimes.

Lately I have noticed that staff will often come into his room and start talking to me, but not to him, or rush past us on their way on or off duty and yell out ‘seeya Jules!’ or ‘hiya Jules!’ but not say this to Anthony. It’s as if my visibility makes him even more invisible. Even if he is included in these salutations, by the time he responds with his own ‘hi’ or ‘bye’ the person has long gone. And he is almost never able to answer ‘how are you, Anthony?’ quickly enough, so he seems to have stopped bothering.

Don’t get me wrong; the staff are wonderful and mostly rushed off their feet. This means that conversation with Anthony (whether I am there or not) is often limited to ‘lunch time, Anthony, up we get’, ‘do you need to go to the toilet?’ ‘bedtime, here’s the bell if you need us’, ‘here’s your 4 o’clock pill – have you swallowed it?’ and so on. When I am there I try to enable conversations between Anthony and the staff in all sorts of ways and this has been a lot of fun and very effective. I guess my intention here is to remind them that he is not just a person with a disease, but a person with a past, that he is a person.

Here are two of the things I have tried:

1. Pictures: I have decorated his room with pictures and photos, which I change from time to time. At the moment there is the enlarged photo of a young, robust, smiling Anthony, a photo of this farm from the late 1950s, an oil painting of cattle I commissioned for him as a Christmas present years ago, a series of photos of Ming as a baby (in the one frame), a personalized calendar my mother made with a different photo of us for each month, a photo of Anthony and me in the early days of our marriage, and a big, window-pane mirror that my brother made for him. My hope is that these visuals will not only trigger great memories for Anthony, but invite the curiosity of staff. The photo of him as a younger man has been a great success in both ways. ‘Wow, what a gorgeous hunk you are here, Anthony!’ ‘Is this your farm?’ ‘Who’s the funny-looking baby?’

2. Food: I take in home-made sticky date (now that I have become good at it), pistachios, exotic chocolates, fancy cheese and other treats and, even though these are primarily for Anthony, I share with the staff. I never realized before what a great conversation-starter food can be! ‘I’m just coming back for another chocolate! Is that okay, Anthony?’ Additionally, the chef at the nursing home makes the most divine pavlova so the other day she snuck me an extra piece for Anthony and voila, he is now recognized as the pavlova-loving patient, not just the patient.

Now, he is becoming visible again.

Of course there are many, many more ways of de-cloaking your invisible loved one if he or she is in a nursing home and these are just a couple of ideas. It is an exciting journey of discovery and beats the hell out of despair!

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32 Comments »

Ageism

Before I entered university life, I worked for around ten years in nursing homes. I felt an enormous affection for elderly people and began to understand the communication value of stories told by people who were in various stages of dementia.

I wrote a PhD, then a book, then articles – all published – and Anthony was so proud of me. We used to talk about the elderly people I’d met, their stories, my theories, and the various drawbacks of life in a nursing home. This was around the same time we got married – 20 years ago.

Little did I know then what would happen to us now, that Anthony would be in a nursing home, that Anthony would get Parkinon’s disease dementia (PDD), that Ming, our son, would become ageist.

Like many young people, Ming has an aversion to old age, but he never used to! He used to be compassionate and kind; now he is either horrified or indifferent.

We had a discussion about this last night and Ming actually admitted to ageism.
“It’s Dad’s fault,” he said.

I went outside and wept.

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Making friends with Despair

I’m not scared of Despair anymore because today she told me that she only wanted a tiny hug before she went to visit somebody else. She said she had tried to visit us before but the doors were always locked.

So I gave Despair an enormous hug, apologized for us locking the doors and, as she hugged me back, she wept into the crevice of my left elbow, then she gave me a short bit of advice.

I kept hugging her until I realized Despair had gone and I was hugging my silly self!

Translation: Despair’s visit catapulted me into seeking help. Tomorrow! Yeah, she was okay enough, but I don’t want her to come back.

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The gift of listening

Years ago I wrote my PhD about the importance of listening to people with dementia who were still able to speak. In the process of turning the thesis into a book for publication, I began to realize the importance of listening in general. At the time, Ming was a little kid and Anthony wasn’t so ill, so I would listen to Ming’s babble and Anthony’s hearty stories with equal attention.

Listening is not always easy because sometimes what you are hearing may not make sense, might be boring or inane or moany, could be longwinded and require patience.

To listen, you have to be able to shut up for awhile, give your own voice a break, and focus on the person you are listening to.

Yesterday, after my altercation with Ming, he broke down and begged me to listen to him and I remembered, with a thud of remorse, that he had been asking me this for some time.

So we sat down together, cried our eyes out in separate chairs and then he began the story of his 3 days away at the Southbound concert festival.

As I listened, I saw how his face glowed in the telling of each episode. After two hours, we were laughing again and I asked for an intermission. “That’s okay, Mum, we can do Episode 3 tomorrow.”

I am beginning to think that the best gift you can give anyone is to listen to them.

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