jmgoyder

wings and things

Swings and roundabouts 2

The two photos I put up in yesterday’s post had absolutely nothing to do with what I wrote and I only added them because, having been on the phone for nearly two hours, trying to get the internet back from its little holiday, I could! So here is my attempt to interpret what those two photos (and a few others) actually mean.

CAST OF CHARACTERS:

Prince – white peacock
Martha and Mary – the two white chooks
Whoopie – the new chook with the fancy hairdo

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Prince: What the hell?
Mary to Martha: Quick! Hide! There’s a huge creature on the other side of the fence!

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Martha to Mary: I think it’s okay. He just did this little purry thing in his throat. Anyway, we’re safe in this yard.
Mary: A purry thing! Martha, do you not realise that he is probably flirting with us?
Martha: Yeah, but you have to admit he is kind of cute.
Mary: Cut your beak off, Martha!

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Prince: I’m not sure whether these strange, short, ugly things are my cup of tea after all.
Mary: See, Martha, not only does he talk to himself, he’s insulting. Ignore him!

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Prince: Okay, so I’m not that good at introductions, but to be rejected so soon by these two whatever-they-ares is very disturbing.

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Prince: Indifference hurts.

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Whoopie: Is the coast clear yet?

Note 1: Whoopie was given to me by a friend who breeds beautiful poultry – thanks so much, Jane!

Note 2: When I first began writing this blog, Anthony was still at home, but ailing. We started to accumulate guinnea fowl and chooks because Ants remembered having these as a young boy/teenager and I wanted to cheer us all up. But then I got a teensy bit carried away with the whole bird thing (as past blog posts reveal ha!) It’s good, now, to begin again with just a few chooks…. even though this bewilders the peacocks!

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Swings and roundabouts

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Yesterday I said, rather blithely, “I refuse to be sad” (about Anthony’s Parkinson’s disease etc.). This morning I realised why it’s possible for me to say this.

Anthony isn’t sad!

It’s as simple as that. Okay, so saddish moments come and go, and the first year of him being in the nursing home was a hell of mutual sorrow. But, in retrospect, it was me shedding most of the tears, not Anthony. In fact often, when I left to come home, he would comfort me.

But it’s now that matters and in-the-now neither of us is sad, which is a bit of a miracle really. The weird irony is that I would not be able to cope with Anthony’s illnesses if it weren’t for his own emotional resilience. I’m not very good at emotional resilience, but Ants is.

People often think that the person in the nursing home is the vulnerable one and that he or she is the one in need of comfort. But sometimes it’s the other way around; it’s the visiting spouse or daughter, or grandson, or friend, who is in need of comfort.

Anthony comforts me!

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The ‘climate change’ of Parkinson’s disease

I sometimes joke with various staff that Anthony’s ‘thermostat’ is faulty. I’m not sure why I do this jokey thing because it’s not funny and it’s one of the things that I worry about most.

Mostly, Anthony is freezing cold during the day – regardless of what the temperature is outside – and boiling hot during the night (again, regardless of the temperature).

So, as we enter Spring, it might be humid outside, and cool inside the nursing home. But, regardless of whatever temperature it is in reality, Anthony’s body temperature is almost always uncooperative/opposite/unpredictable.

When Ants was still at home, we lit the fireplace fire, the Aga, turned multiple heaters on, and even got air conditioning in the living room. But I could never get him warm enough!

During the days, all of this heating would be on and I would cover Ants’ knees with a blanket, light the fire etc., but he would still be cold.

Conversely, during the nights, Ants would be so hot and sweaty that I would have to take his blankets off and put the fan on.

A couple of the staff have told me about how hot and clammy he is when they put him to bed, so I bought a bunch of singlets in the hope they they will ‘magic away’ these temperature fluctuations.

It really bothers me though. Apart from me worrying about whether Anthony is too hot or too cold, I also worry that he has now reached the stage of not being able to tell anybody that he is too hot or too cold.

Anthony never complains about his illness, about being in a nursing home, about staff, about anything; he is the most resilient person I know.

I wish I could show the world what Anthony used to be like – LOUD, gregarious, kind, generous … and a zillion other adjectives!

PD doesn’t have to be sad. Okay I am struggling with Anthony’s PD and trying to figure a lot of things out, like this thermostat conundrum, but I refuse to be sad ….

…. because I have met some friends now who help me to cope and their kindness is extraordinary – the staff at the nursing home!

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Jigsawing

Blogs can be like those really difficult jigsaws that it might take you years to complete but, at the end, you can’t quite complete because of all the missing pieces. You know exactly what those missing pieces look like, and how they are shaped, but you have to accept that they have probably been gobbled up by the vacuum cleaner, then used to make a bird’s nest; they’re gone but not gone.

Some time ago, I paid a small amount to have my blog converted to book-like format so that I could print it out. The reason I did this was not so that I could admire my clumsy, incoherent handiwork, but so that I could re-shape it into some sort of coherent story about Parkinson’s disease.

Okay, so the PDF conversion meant that it would print from 2011 to now rather than backwards-in-time. Because each year consisted of hundreds of pages, I ended up with seven PDF files and happily printed out one and a half of these files until my printer
spat
the
dummy!

Well, after weeks of wrestling with/ coaxing/ swearing at /wanting to OBLITERATE/ and finally giving up on, my uncooperative printer, I came to my senses and put all of the files onto a usb and took it into a print shop. Half an hour later
hey
presto!

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Now, hopefully, within nearly 3,000 pages of blog words and images – a jigsaw of thoughts and emotions spanning nearly four years – I will find something that is worth editing into a useful and publishable book.

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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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Parallel universe

I think one of the things that is most bewildering, if you are caring for someone with dementia, is the fine line between present-tense lucidity and remembered lucidity.

For example, when I visited Anthony the other day, he was eager to tell me the latest news:

Anthony: Have you seen the news, Jules? We have a new prime minister.

Me: Yes, I saw that too.

Okay, so the above shows how absolutely ‘on the ball’ Anthony can be especially when it comes to current events. I always leave the news channel on his television before I come home because he has always loved watching the news.

But the very next thing Anthony said amazed me ….

Anthony: Mum will be shocked!

This is the kind of conversation that always gives me pause as I try to process the fact that Anthony has, within less than a minute, conflated the reality of now with the reality of over three decades ago. It sometimes seems extraordinary to me that Anthony can so expertly move between eras in the space of a couple of sentences.

Perhaps this is why what used to seem tragic to me has now become fascinating, and sometimes even comforting. After all, I loved Anthony’s mother, who we younger ones called ‘Gar’ so I was catapulted into nostalgia-land briefly, remembering her canny opinions on politics.

Me: Do you think she approves of the leadership change?

Anthony: Yes, but is she all right?

Me: She’s fine, Ants.

One of the last things Gar said to me as she lay in the hospital bed, dying, and I held her hand, was, “You will look after Anthony won’t you”, and I promised her I would. When I made that promise, Ants and I were still eons away from having a romantic relationship, let alone a marriage! So, in retrospect, it was a bit of a far-fetched promise, but I meant it.

Of course, as a teenager, I had no idea how things would all unfold. It is uncanny now to be reassuring Anthony (who is approaching the age Gar was when she died) that she is all right.

‘Parallel universe’ seems to be the phrase that best describes the strange but wonderful space in which Anthony and I connect, cognitively and emotionally.

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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.

34 Comments »

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

35 Comments »

The best gift!

It is over three months since I was employed part-time in the dementia cottage of the nursing home and I really miss seeing those residents oftener than I can now.

Even though I visit from time to time during the week, it still feels a teensy bit awkward due to my status of employee having changed to that of visitor. I know many of the relatives and most of the staff so I have been trying to figure out what gifts to bring that will make my occasional visits quiet and seamless – unobtrusive.

There are strict rules now in most nursing homes about gifts. I.e. do not offer chocolates, chilli olives, or brandy, to residents (yes, that was me – sorry!) Also, do not give staff any gifts whatsoever or it may seem like a kind of bribery (this rule is only hearsay but it made sneaking in 6 pizzas one night, two years ago, very exciting!)

Anyway, one of the things that delights Anthony most (apart from chocolate cake with lashings of cream) is the singular bloom of one of his many camellia trees.

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The above is one of the many I bring in daily to Anthony’s room and that’s what gave me the idea of taking lots of camellias into the dementia cottage. After all, when there is someone at the door with flowers, the door is usually opened!

My heartfelt thanks to the staff who look after those with dementia, and those in high-care like Anthony. You are legends so perhaps I should bring a camellia tree in!

I have never picked so many flowers in my life!

31 Comments »

‘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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