jmgoyder

wings and things

An auspicious occasion

Here is a photo of my dearest old friend and me at his wedding brunch the other day.

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My dearest old friend, who I have known for over 40 years, got married last week and on Saturday morning a group of us celebrated at a beautiful apple orchard up in the Perth hills.

My dearest old friend, and his partner of 17 years, exchanged rings, and spoke of their love for each other eloquently; a priest, who has known my friend for longer than I have, gave a heart-felt blessing; and then two other friends toasted the happy couple. I had the honour of sitting on my friend’s right hand side during a delicious brunch.

My dearest old friend makes me laugh like nobody else can, cooks the best shepherd’s pie ever; performed Anthony’s and my own wedding ceremony; and was the first person (other than Anthony) to see baby Ming.

My dearest old friend is the only person in the world who can convince me to wear ‘a frock’ (well, I compromised by wearing a skirt).

I am so happy for my dearest old friend and his partner!

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Dilemma

Last week I received the following email:

Dear Julie,
I am writing with regard to your book titled We’ll be Married in Fremantle. Given increasing warehouse costs, we have had to review the amount of stock that we are holding for a number of titles where sale numbers each year are low. Unfortunately this book is among those selected to be removed from stock. We would, however, like to offer you the opportunity to purchase as many of these copies as you choose at a price which will cover our costs of shipping and handling….
CEO of … Press

Initially I felt humiliated, then I realised that it is now a rather ‘old’ book, having been published in 2001. I also comforted myself by realising that most of the 5,000 books had sold and I could rescue the 300 or so remainders from being pulped at very little cost. I am still deciding what to do.

It’s not that I have any intention of on-selling the books; I certainly don’t want to have 300 or so copies of my own book on my bookcase to remind me that it wasn’t a bestseller; and this dilemma has nothing to do with ego.

During the time of writing my PhD, then re-writing it into a book (several years altogether), I remember being absolutely driven. I wanted passionately to write something that would change attitudes to people suffering from Alzheimer’s disease. And my thesis/argument was so simple: listen, and respond to, the stories, even when they don’t make sense.

So I have a few creative ideas of what to do with those 300 or so copies IF I decide to rescue them from obsolescence.

Prince and Princess don’t have to worry about these kinds of things – oh to be a bird!

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Leaps and bounds!

Gardening: I have planted vegetables in one of the beds that Jake (my lawn and gardener friend) has created for me. I have no idea whether these lettuce, cucumber, corn, parsley and tomato seedlings will grow up but here’s hoping. I’m a bit too nervous to ring Jake and ask if I have planted these things in the right places – i.e. should they be in the grave-like mounds or in the gullies? Just in case, I did both.

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Chooks: Six quite different chickens are gradually getting used to each other with minimal violence. They have a lovely yard so hopefully peace will soon reign.

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Lunch: I seem to be going out to lunch a lot lately which is something I only ever did very occasionally before Anthony went into the nursing home. This feeling of freedom is relatively new to me. It was always there of course and Anthony was never one of those dominating, bossy husbands who insisted on the adding cream and more butter and salt to the mashed potatoes. Wait a sec. – yes he did!

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WELL, IT’S BETTER THAN NOTHING, YOU GARDENING, CHOOKING, LUNCHING PEOPLE!

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Keeping a record

Yesterday, after writing about Anthony not coming home, not asking to come home, and sometimes not remembering home and/or thinking he is home in his nursing home room, guess what?

He asked to come home. Not once, not twice, but repeatedly throughout the late morning and early afternoon. I was so taken aback because this hasn’t happened for ages – maybe months – so I was a bit unprepared. He kept trying to get up from his armchair (he needs help to do so) and, every half hour or so, repeated, “Come on Jules, let’s go.”

Me: It’s too cold and wet today, Ants. Let’s wait until the weather is better.

Anthony: I can light a fire in the fireplace.

Me: We don’t have any kindling.

Anthony: I’ll chop some in no time.

Me: It’s a bit late in the day, today. What about tomorrow morning?

Anthony: You’re unreasonable (removing my hand from his).

Me: What? Are you angry with me now?

Anthony: I haven’t been home for months. You keep stopping me!

After a couple of repeats of the same conversation, more or less, I decided to end it by promising to pick him up at 10.30am today and bring him home. Once that was established, he reached for my hand again and we continued to watch the television and eat olives.IMG_4740

When I got home last night I wondered if this sudden relapse into homesickness (which was a two-year nightmare for both of us which I blogged about on and off) might have been triggered by my conversation with Anthony’s nephew the other day about the possibility of bringing Ants home for the day. In retrospect, I should have steered this conversation away from the topic of ‘home’ (especially within Anthony’s earshot), but I had no way of anticipating that the idea would somehow stick and re-emerge days later.

Okay, so today was when I was supposed to fulfil my promise to Anthony that I would pick him up at 10.30am and bring him home. This may sound callous but I had no intention of doing this, simply because I can’t physically manage him by myself; he is too heavy.

So I made myself wait until after lunch to go in and see Anthony. And I have to say that it was with a mixture of dread and curiosity that I entered his room (with my bunch of camellias).

To my great relief, it was immediately apparent that Anthony had forgotten yesterday’s ‘home’ conversation. Instead:

Anthony: I didn’t expect to see you! You are good at geography.

Me: Look at these camellias!

Anthony: You’re so early! (It was 1pm)

Me: How do you like my boots? (I was wearing colourful boots)

Anthony: A bit way out.

Me: How Dare you!

Anthony: Sit down and shut up.

Me: Don’t you tell me to shut up!

Anthony: Can you put that that that trolley up in my room? (pointing to his walker) – also that woollen coil (pointing to the blanket on his knees).

Me (putting walker into his bathroom and closing door, readjusting his knee blanket): Okay – are you warm enough?

Anthony: Yes.

Me: Right, so can you stop fussing about the stupid blanket? It’s just a blanket!

Anthony: Yes, but look at the little fella (there is always either a child or a pet on Anthony’s lap from around 4pm).

Me: Yes, it’s a beautiful sight, beautiful.

Anthony (after a bit of a slumber): Jules?

Me: Yes? I’m here, Ants.

Anthony: Can you roll me up?

Me: Do you mean put your feet down? (I had his feet up in the armchair) How’s that?

Anthony: Bloody beautiful.

I always have pen and paper handy to scribble down my conversations with Anthony. Today and yesterday have been interesting in terms of his alertness (some days he sleeps and/or drowses during my visits).

It sometimes seems a bit odd to me that I am so fascinated by what is actually a tragic situation but Anthony has always inspired me in one way or another. At nearly 80, he has the most extraordinary resilience; he is positive without meaning to be; and he never complains except to say he is “a bit tired”.

Keeping a record of these conversations seems important somehow. For me, these transcribed tidbits of conversation make me feel as if I have a handle on our situation; that I can somehow control it into a manageable story that Anthony will appreciate.

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Spring chicken

One of the best things about getting chooks again is telling Anthony the stories that go with the chooks. He gets a real kick out of my ineptitude.

A couple of days ago I picked up another couple of chooks from some serious breeders who go by the name of Chookloop. As soon as I got home, I put them in the chookpen with the other four but they’re a bit smaller so the big ones started pecking them and one of them was smart enough to figure out how to get out of the chookpen – argh (it took me ages to catch her).

So I brought them inside and put them in a box on the back veranda with some food and water. But, as soon as I turned my back, the smart one flew out and followed me into the kitchen where she hid behind the fridge until I was able to ease her out with a fly-swat (another hour).

I ended up putting them outside the back door in an upside down laundry basket which is where they spent their first night. The next morning, I went out to replace their water and, as I was doing so, the smart one got out, so I let the not-so-smart one out as well. They had a wonderful time frolicking under the fig tree. It was only when I attempted to catch them and put them back under the laundry basket that I realised I might need yet another set of ages/hours.

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Notsosmarty was relatively easy to grab, but Smarty eluded me for well over an hour. I finally had to give up being gentle and simply threw myself into the shrubbery under the fig tree in a kind of football tackle which left us both muddy and disgruntled. I gave her a little cuddle, she pooped on me, and a friendship was born.

Since then, they have both spent a couple of nights in the ground cage we raised the guinnea fowl and peafowl in eons ago. I’ve placed this inside the chookyard so that the other chooks can get used to them without being able to peck them. They are also protected from crows, but they do look a bit miserable this morning because it is so cold and wet.

It is great to be able to answer the dreaded question, “So, what have you been up to lately?” with, “I have some new chooks!” instead of my usual, faltering, “Oh, this and that.”

It’s quite refreshing, too, to be able to give Anthony some new news and, as he has always loved chooks, it is a mutually enjoyable topic of conversation. What I like most about this is that the new chooks, despite reminding us both of previous chooks (and even chooks Anthony may have cared for as a child), are a fresh addition to the conversations we have in the cozy world of his nursing home room.

Okay, a bit of dialogue:

Anthony (referring to ‘my hero’ of yesterday’s post after she popped in with his clean laundry): That’s the girl, right?

Me: Yes – she is wonderful.

Anthony: And she’s on our side isn’t she.

Me: Of course!

Anthony: Your hair needs combing (oh why is this such a preoccupation with him?)

Me: Why the hell are you so obsessed with my hair? It’s windy outside, and raining. I’ve battled a storm to come and see you and all you can do is criticise my hair! I’ll have you know this is the best cut and colour I’ve ever had and I adore my hair-dresser.

Anthony: Give me a comb.

Me: What? Why?

Anthony: I can fix you. You’re still a spring chicken.

Hence the title of this post which, remarkably, ties in with the chook thing – ha!

PS. After Anthony combed my hair, I ruffled it up a bit and he smiled the benevolent smile of a chook-owner.

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Restful

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Sometimes I feel a bit guilty for being so totally relaxed and lazy in Anthony’s nursing home room. Okay so I did a bunch of paperwork there today but, for most of the afternoon, I just put my feet up on his knees and watched West Wing while he slumbered on and off.

I think this restfulness is good for both of us; he wakes up from a nap and almost always says, “Jules?” For me, it is good to be there because there must be many, many other times that he asks for me but I’ve gone home.

Most of the staff now know the white lie I want perpetuated – that ‘Julie will be back soon’ – and this seems to comfort Anthony (and me of course!)

This afternoon, as Anthony slumbered, I quietly packed up my things and put a pillow on the chair next to his, where I usually sit. He suddenly woke up and said:

Anthony: Where are you going, Jules?
Me: Just to get some groceries, Ants. I won’t be long.
Anthony: I am crazy.
Me: No, you are NOT crazy!
Anthony: I’m crazy about you.
Me: Oh … well, so you should be!

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I no longer think being restful is a lazy thing; it beats the hell out of anxiety, and it beats the hell into acceptance.

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Changing

Progress is impossible without change, and those who cannot change their minds cannot change anything.

George Bernard Shaw

I have changed my mind so many times over the last few years, months, weeks, days, minutes, moments, about how to best care for a husband, 79, in a nursing home, and our son, 21, embarking on adulthood. It’s doubtful whether Ming will want chooks in his future life!

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Not very long ago, whenever people talked about the weather, or gardening – whether it be small-talk or serious-talk – I would tune out. I have never been the least bit interested in anything relating to the actual job/hobby of gardening despite numerous attempts to get interested.

Okay, I got interested many times; but I didn’t remain interested, mostly because I was busy working at the university and bringing up the beautiful brat, Ming (who, by the way, isn’t interested in gardening either.)

Gardening was Anthony’s ‘thing’. His family (mother and younger brother) came here in the late 1950s to run a dairy farm and Anthony began planting things – camellias, palms, silver birches, flame trees, roses, citrus, hedges … and a whole lot of other stuff.

Up until the year before the nursing home, Anthony was still interested in planting, watering, and wandering about, in the garden. But he would get stuck! We only had the walking stick then so he would go out the back to check on a hose and then become paralysed and sometimes it took a whole hour to get him back to the house. Then, one day, when he was in his armchair in front of the fireplace, I told him not to move while I went up to the shop to get some supplies, only to find him face-down in the front yard; he’d fallen again!

Parkinson’s disease (and all of its off-shoots, including dementia) is an ever-changing condition that can make life tricky for those who care for family and friends inflicted. For example, sometimes I can show Anthony photos of home – the new chooks, the better-kept garden, the mowed lawns etc. and he will think he has been home.

But, at other times, Anthony will ask to come home and I will have to distract him. This is not because I don’t want him to come home; it’s because he is mostly immobile now so I actually can’t physically manage him. The guilt is ghastly of course but it is easily blitzed by my almost-daily company, in the nursing home, during the afternoons. And photos of the new chooks!

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This morning this wonderful group of gardening people came over (it’s a group I’ve recently sort of joined) and each person had a good piece of advice for me. Plus everyone brings some produce to exchange – fascinating!

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I am changing into a gardening person!

Progress is impossible without change, and those who cannot change their minds cannot change anything.

George Bernard Shaw

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Going with the flow of dementia

Here is one of my conversations with Anthony yesterday –

ME: I think we should get chooks again, Ants.

ANTHONY: Yes – good idea.

ME: But this time we should keep them in the chook-yard and not let them out at all – safer from the dogs and foxes. What do you think?

ANTHONY: So when do you start work?

ME: What do you mean?

ANTHONY: F said you’d be working for R.

ME: The vet?

ANTHONY: The veterinarian.

ME: Okay, the veterinarian if you want to be precise! Well, I’m not sure. Do you think I’d be any good at it?

ANTHONY: Yes, I do because of the chooks.

ME: Well I do love animals ….

ANTHONY: You’ll be fine.

There is a fair amount of debate around whether to ‘go with the flow’ – or not – when it comes to interacting with people who have dementia. With Anthony, I tend to fluctuate between ‘going with the flow’ and telling the truth so yesterday I suddenly became a vet.

But other times, when, for example, he is worried that his mother is home alone, I will gently remind him that she died many years ago. He usually accepts this quite well and is sometimes a bit embarrassed that he has forgotten this fact.

‘Going with the flow’ isn’t so simple though. If someone with dementia thinks there is a monster under their bed, it’s obviously not a great idea to agree. But if someone with dementia thinks there is a family pet under the bed, it’s obviously a great idea to agree.

Carers who work in nursing homes walk a tightrope of tact when responding to residents who have dementia. Alleviating dementia-induced distress can be a minute-by-minute challenge.

As Anthony is my husband, I don’t have to be quite so tactful with him and will sometimes go as far as to say, “You’re talking rubbish again!” OR “You’re hallucinating again!” We can turn the confusion into a joke and/or a hug that way.

Anyway, here they are – the two new hens. I was feeling a bit biblical so I have named them Martha and Mary. Mary is the one with the black feather marking. As you can see they have a huge yard!

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I can’t wait to show these pictures to Anthony this afternoon!

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‘Jake’s Mowing and More’

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The above photo shows how out-of-control the wormwood hedge had become during the last few years of Anthony living in the nursing home. He used to take such pride in trimming that unruly hedge, in pruning the roses, in picking the camellias, in mowing the lawns etc. As for me? I was not the least bit interested, and never have been, in gardening.

But then, a couple of months ago, I discovered Jake. I had previously employed a lawn service – a lovely couple – just to do the lawns (5 acres) and Ming was sometimes unhappy about this because he felt he should be doing it himself. Anyway, the lovely couple moved into a different profession, Ming got full-time work and, as the grass soon leapt up to knee level, I decided I needed help.

So Jake came to the rescue and not only has he controlled the wormwood, he has also made this place look like it once was when Anthony was in control of things.

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Yes – the above photo is of the same lengthy wormwood, now ‘Jaked’!

Anyway, yesterday this whole place was blitzed by Jake and I came home from the nursing home in the late afternoon and felt as if I were entering a park. The nostalgia was acute as I was reminded of that very first day when my parents dropped me off at this farm to be interviewed by Anthony’s rather formidable mother for the job of house-keeper/companion. I was a teenager so I didn’t really notice the garden but do remember vividly the impression that this was a place of beauty and magic.

Three decades later, this wonderful marriage tangled up by Anthony’s diseases and entry into the nursing home, this place, this farm, became a place of despair – mine. So I guess I just kind of gave up any interest in either the house or the garden; I was just too sad.

Fast forward to now and Jake’s lawn service has been a godsend in that this wonderful man, and his son and off-sider, have taken an interest in the place. I know now that I can call on Jake for garden jobs beyond lawn-mowing.

Anyone who can turn something shabby into a work of art is a person worth knowing.

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[Jake: 0487343141]

I have a couple of my new gardening friends coming over tomorrow morning to hopefully give me their advice on vegetable gardening and chooks, so I think I will just pretend that I mowed the lawn myself. They are sure to believe me – hahahaha!

Thank you, Jake.

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Happy hours

Anthony’s increasing ability to smile again continues to flabbergast me. This afternoon, I arrived at the nursing home and, on entering his room, saw that two of our best friends (a husband, F, and wife, J) were already there. J whispered to me that Anthony’s face always lights up when I come into the room. They are frequent visitors to Anthony, so they often see this but the fact that J said this to me really made my day.

J has a sense of humour that is slicingly clever and she has this ability to get straight to the point with a unique mixture of irony and kindness. When she invited Anthony to the movie she and F were going to see – about euthanasia – Anthony politely declined and I guffawed.

F (an old school friend of Anthony’s) constantly teases him about past girlfriends but this afternoon Anthony managed to eke out a couple of eloquent retorts and the mutual banter was a delight. I poured a couple of small glasses of wine (it’s Sunday!) then F and J left to go and see the euthanasia movie.

It was such a happy hour and I am so grateful for these friends who help to normalise the situation. J told me that when they arrived and asked Anthony where I was he told them I was hanging out the washing! I think this means that perhaps my presence in his room every afternoon (well, mostly) explains my absence in the mornings and nights. It is possible that he thinks I am doing chores, cooking dinner, possibly even gardening!

Now that I am over the whole tragedy-of-husband-going-into-nursing home, and now that Anthony, too, accepts the status quo and often thinks we are at home anyway, our afternoons are happy.

I usually sit on the side of Anthony’s armchair and we watch another episode of whatever television series I’ve acquired; he often sleeps the afternoon away; I sometimes socialise with the staff and other residents; cups of tea + cake are delivered; his pills are dispersed by his favourite nurse, D, who Ants calls his girlfriend.

When I was unwell last week my wonderful mother substituted for me and sat next to Anthony in his room, knitting, until he suddenly said “Are you going yet?” Hilarious.

And Dina, my decluttering friend, visited Ants on a day when she and I were supposed to be having brunch (but I was still bilious). What an incredibly kind person to do this for me!

The funniest of these many happy hours, though, are Ming’s visits to Anthony. Big, loud and assertive, he goes into Anthony’s room and, if Ants is asleep in his chair, Ming doesn’t wake him. But if Anthony is awake, Ming will lie on the bed and they will have a chat. It’s probably quite alarming for staff to come into Anthony’s room and see this great big hairy-legged boy-man-creature lying on Anthony’s bed with no care whatsoever about protocol or the cleanliness of linen.

Sometimes, when Ming’s and my visits to Anthony coincide, there is friction between Ming and me. I’m not quite sure why this is but he seems to relate better to Ants when I’m not there. And vice versa. Nevertheless, Anthony’s pride in Ming is overwhelmingly evident and he often ‘sees’ Ming in the corner of the room (hallucinations).

I’ve begun to appreciate every single hour, especially the happy ones. These hours more than make up for the desolate ones.

[Note to blogger friends: I am a bit preoccupied with above so haven’t been reading – sorry]

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